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TUBERCULOSIS IN SURREY: HEALTH NEEDS ASSESSMENT Dr Liz Brutus Specialty Registrar Public Health Public Health Department Aug 09 Executive summary Purpose of the document The strategic aim of this work is to improve the prevention and treatment of tuberculosis (TB) in Surrey in line with the recommendations outlined by the Chief Medical Officer in 2004 and the guidance detailed in the NICE Clinical Guidelines and using guidance provided by the DH TB Commissioning Toolkit. The long-term goal is a reduction and ultimately, the elimination of TB in Surrey. The immediate goals of Surrey’s TB programme are to: 1. Reduce the risk of people being newly infected with TB in Surrey 2. Provide high quality treatment and care for all people with TB 3. Maintain low levels of drug resistance, particularly, multi-drug resistant (MDR) TB Introduction and statement of the problem Surrey has approximately 80 – 90 cases of TB each year (which equates to an incidence of TB of 9.4/100,000). Surrey is defined as an area of low TB incidence (ie less than 40 cases a year per 100,000) however, like the national picture, this average rate hides pockets of considerably higher incidence. Rates of TB in Surrey have varied over time without any clear trend but nationally, rates still appear to be increasing although slowly. What is TB? Tuberculosis (TB) is a communicable disease and both worldwide and in the UK, it is considered a notifiable disease. The onset of TB is insidious. Primary infection is usually asymptomatic. The presentation of secondary infection is variable and often non-specific. A high index of suspicion in patients from particular risk groups is essential to make a diagnosis. Incidence TB tends to occur in working-age adults aged 20-44 who have been born overseas and tends to be associated with more urban areas. For example, Woking Borough has the highest incidence of TB and not surprisingly, Ashford & St Peter’s Hospitals see the largest proportion of Surrey residents with TB. New entrants are particularly at risk of developing active TB which usually occurs within the first 5 years of entry to the UK. A concern for Surrey is the number of undiagnosed cases of TB which is most likely related to the lack of awareness amongst health care professionals, especially in Primary Care and amongst the public. Diagnosis, when it is made, is often slow and this is both detrimental for the individual with TB and the wider public health. Surveillance Surveillance is carried out by the Health Protection Agency (and its local office within Surrey, the SSHPU) and relies on the monitoring of a variety of sources including laboratory reports and treatment outcomes but the mainstay of surveillance is enhanced TB surveillance. This is a national programme that relies on statutory notification from clinicians. Within Surrey, there are concerns that this system is not being adhered to as closely as it should which undermine the integrity of the information available to assess the impact of TB on the Surrey population. Guidance on surveillance is provided in the TB Commissioning Toolkit. Current services The mainstay of routine TB care is provided by chest physicians and TB nurses within Surrey’s acute trusts and the Community TB Nurses provided by Surrey Community Health. However, there are complex relationships that exist between Surrey PCT, Surrey HPU and other stakeholders. To date, these relationships have existed implicitly but increasingly, more explicit contractual agreements are needed to formalise the obligations and responsibilities that each organisation owes each other and their common patients. 2 Laboratory services Laboratory support for TB is provided through the acute trusts’ microbiology departments who each completed a survey of service provision. There is currently some debate regarding the advantages and disadvantages of centralising TB laboratory services within Surrey. Recommended laboratory standards are prescribed by the TB Commissioning Toolkit. Funding for the more expensive quantiferon tests remains a potential bone of contention. Current provision of TB care for people with or suspected to have TB TB services are largely centred on acute trusts where confirmation of diagnosis, treatment initiation and monitoring are largely provided. Response to treatment and associated patient welfare is mainly monitored by TB Nurses. Recent NICE guidance is available to guide the management of those with or at risk of TB. Audit of clinical standards is not occurring regularly within Surrey so it would be difficult to formally assess how closely NICE guidance is being implemented. A significant clinical governance challenge in Surrey, due to its low incidence of TB, is clinicians’ familiarity and expertise in diagnosing and managing TB – both latent and active TB. This is a particular risk for the management of children where the numbers at individual acute trusts are particularly low. Similarly, GPs remain a significant gatekeeper to the TB service but in Surrey, their awareness and familiarity with TB is falling and this presents a risk to the timely referral of patients with TB into TB services. Surrey PCT Community TB Nurses Community TB Nurses are provided by Surrey Community Health (the provider arm of Surrey PCT). The team consists of approximately 2.4 FTE however, only 0.8 FTE is Band 7, the usual grade for a TB Nurse Specialist. This team is stretched thin over a large geographical area and historically, the east and south-west of Surrey have had less TB Nurse support for tasks such as contact tracing and domiciliary visits to ensure treatment adherence over the 6 months of a patient’s typical treatment. Clinical supervision and continuing professional development have been similarly patchy and present a potential risk to clinical governance. TB Control – Screening for TB In general, screening for TB is provided on an opportunistic and ad hoc basis, usually in response to either a single case or a TB incident. Active case-seeking and education amongst higher-risk groups, such as among BME, prisoners or the homeless has suffered due to the lack of TB Nurse capacity and PCT strategy for TB management. The management of New Entrants remains a challenge for the PCT, Port Health and the HPU, largely related to the lack of clarity regarding the general coordination of screening in the county. Managing tuberculosis incidents and outbreaks TB Incidents have most commonly occurred in schools and health and social care settings. They become complex due to a combination of factors; the speed of response and the level of coordination required from multiple stakeholders, managing public anxiety and contractual issues regarding responsibility (and payment) for different incident tasks. Recent outbreaks have highlighted the need for a standard operating procedure, agreed by the key agencies, to most effectively manage these incidents. TB Prevention – BCG immunisation Since 2005, BCG immunisation is no longer routinely offered to all children but is targeted to people most at risk of TB. Within Surrey, the responsibility for BCG has fallen within the remit of either TB Community Nurses or the PCT Immunisation Teams. This is dependent on geographical location and has prevented a Surrey-wide approach. Current over-stretch of the TB Community Nurse team requires that this provision is urgently reviewed. 3 Patient views of TB services A patient survey of TB patients was completed in Jun-Jul 09. 13 people (of 40) responded, of whom the majority were non-British-born Asian or African. Generally, patients were happy with the service provided, the information received and they felt they were treated with respect. On average, it took 13 weeks from the onset of symptoms for GPs to refer patients to secondary care. Patients also reported there was a lack of information and knowledge about TB in primary care. These results are supported by survey results from other PCT areas. Effectiveness of services and funding Surrey has a TB Clinical Network which meets twice per year however, the attendance, especially from chest physicians from all the acute trusts within Surrey has been patchy. This can make it difficult to agree pathways of care for patients. Funding of acute TB services is mostly provided by the national Payment by Results ‘Tariff’ however, due to a lack of service level agreements between the PCT (both provider and commissioning arms) and acute trusts, there is a lack of clarity regarding the delineation of responsibility for community-based services such as domiciliary visits and incident management. Options and models of care Programme budgeting is a financial tool that can be used to compare patient outcomes against actual health care funding for different disease areas. It has been used to compare Surrey which has slightly worse TB outcomes than, for example, Berkshire West PCT although they spend similar amounts of money. Key options for TB services are whether to be based in acute trusts reaching out to the community or vice versa, ie based in the community but reaching in to acute trusts. In either scenario, it is vital that physicians managing TB patients and TB Nurses must work closely together to bridge the divide between hospital and community to optimise TB patients’ outcomes. The PCT is key to commissioning high quality TB services through planning, finance and information management and a care pathway focus. Key recommendations A large number of recommendations have been made in the course of compiling this needs assessment, however the five key ones for Surrey are: 1. Increase awareness of TB amongst GPs in order to speed up diagnosis. 2. Improve TB notifications from acute trust clinicians to the Surrey Health Protection Unit in order to improve surveillance (and therefore target those most at need) and ensure activation of the Community TB Nurse response to new patients with TB. 3. Develop the relationships between the Community TB Nurse team and the hospital-based chest physicians. 4. Agree Surrey-wide patient pathways (for both adults and children) including screening and management of those with or suspected to have TB. 5. Formalise the contractual relationships between the key stakeholders for both routine management and for TB incident management eg through service level agreements and standard operating procedures. 4 Contents 1 Purpose of document 2 Introduction and statement of the problem 3 What is TB? 3.1 Notifiable disease 3.2 Cause of tuberculosis 3.3 Types of infection 3.4 Symptoms 3.5 Diagnosis 4 Incidence 4.1 by borough 4.2 By hospital 4.3 By age 4.4 Trends over time 4.5 Undiagnosed TB cases 4.6 Incidence in new entrants 5 Surveillance 5.1 Routine data sources 5.2 Local data collection and databases 5.3 Special groups 5.4 Standards for surveillance 5.5 Summary of data systems and TB surveillance 6 The core TB service and inter-relationships with other stakeholders 6.1 Inter-relationships 6.2 The core Surrey TB service 7 Laboratory services 7.1 Current service provision 7.2 Recommended TB service laboratory standards 7.3 Use of laboratory services in latent TB screening 7.4 Funding of gamma-interferon tests 8 Current provision of TB care for people with or suspected to have TB 8.1 Overview 8.2 Role of GPs and primary health care professionals 8.3 Managing TB patients within two weeks 8.4 Acute adult services 8.5 Acute paediatric services 8.6 Prescribing anti-TB treatment 8.7 Management of multiply-drug resistant TB (MDRTB) 9 Community TB nurse team 9.1 Overview and responsibilities 9.2 Staffing 9.3 Distribution and capacity of the Community TB Team 9.4 Clinical supervision and continuing professional development 5 10 TB control – Screening for TB 10.1 Contact tracing 10.2 Higher risk groups 10.3 BME 10.4 Port Health and the care of new entrants 10.5 Asylum seekers, refugees and ‘illegal’ new entrants 10.6 TB in prisons 10.7 Street homeless 10.8 People living with HIV/AIDS 10.9 Occupational risk groups 11 Managing TB incidents 12 TB prevention – BCG immunisation 13 Patient views of TB services 13.1 Surrey PCT TB Patient Survey results - 2009 13.2 General results from other areas’ patient surveys 14 Effectiveness of services and funding 14.1 Surrey TB Clinical network and TB leads 14.2 Use of audit 14.3 Funding of acute and community TB services 15 Options and models of care 15.1 Using programme budgeting to compare outcomes in other areas with money spent 15.2 Comparison with services in other areas 15.3 Key elements of a comprehensive service 15.4 PCT commissioning responsibility 16 Summary of recommendations Acknowledgements Appendices Appendix 1 Appendix 2 Appendix 3 Appendix 4 Appendix 5 Appendix 6 Summary of NICE guidance for the diagnosis of TB Laboratory services in Surrey – questionnaire and result Analyses of New Entrants to Surrey during the period 01/01/07 to 20/09/08 Dr Kevin Carroll, CCDC, Surrey and Sussex Health Protection Unit Standards for surveillance Standards and criteria for effective laboratory diagnosis of (active) Mycobacterium tuberculosis infection TB Patient Survey Results - Jun 09 6 1. Purpose of document The strategic aim of this work is to improve the prevention and treatment of tuberculosis (TB) in Surrey in line with the recommendations outlined by the Chief Medical Officer in 20041 and the guidance detailed in the NICE Clinical Guidelines2. The long-term goal is a reduction and ultimately, the elimination of TB in Surrey. The immediate goals1 of Surrey’s TB programme are to: 4. Reduce the risk of people being newly infected with TB in Surrey 5. Provide high quality treatment and care for all people with TB 6. Maintain low levels of drug resistance, particularly, multi-drug resistant (MDR) TB 2. Introduction and statement of the problem Although the incidence of TB now appears to be stabilising across the UK, the rate is still too high1,3. Latest data (2006) show the national incidence was 14.0/100,000 and South East regional incidence was 8.6/100,000. The incidence of TB across Surrey was 9.4/100,0004 but like the national picture, this average rate hides pockets of considerably higher incidence. Areas with higher incidence are associated with larger proportions of people from BME groups, new entrants and with social deprivation. For example, in Surrey, there is a much higher incidence of TB in Woking and Spelthorne than in Mole Valley. However, in general, Surrey is considered to be a ‘low –incidence’ area especially in comparison to London where almost 40% of the nation’s people with TB live. (Low incidence is defined as an incidence of TB cases less than 40 per 100,0002.) It is reported by service providers in Surrey that historically, TB services locally have developed in an uncoordinated way, often with limited resources. This was largely understood to be a function of the relatively low incidence of TB however recent publications1,2,3,4 have recognised the importance of managing TB to high standards regardless of the prevailing incidence. Poor prevention and treatment of TB presents various risks to Surrey PCT. For example, it costs more (approximately £50,000 -70,000) to treat someone with drug-resistant TB (which results from inadequate initial treatment) than uncomplicated TB (approximately £5,000)5. Additionally, there may be risks to Surrey PCT’s reputation and medico-legal risks where clinical pathways fail to comply with recommended clinical guidance and the population’s health is put at risk. TB is a notifiable disease. Left untreated, a person with TB with infectious TB of the lungs infects on average 10-15 people every year. The risk of a contact acquiring infections depends on the nature and duration of their exposure. Over the last two decades, tuberculosis has re-emerged as a public health problem in the UK. Its re-emergence has been marked by a significant change in its epidemiology. Tuberculosis now largely affects population subgroups such as ethnic minorities, non-UK born individuals, the homeless and problem drug users6,7. The highest burden largely affects deprived communities8. As such, tuberculosis can be seen as a symptom of health inequalities. 1 Stopping Tuberculosis in England: An action plan from the Chief Medical Officer. Oct 2004. DH. Tuberculosis: Clinical diagnosis and management of tuberculosis, and measures for its prevention and control. 2006. NICE. Available at: http://www.nice.org.uk/nicemedia/pdf/CG033niceguideline.pdf 3 Tuberculosis in the UK: Annual report on tuberculosis surveillance in the UK 2008. 2008. HPA. 4 Surrey PCT. Joint Strategic Needs Assessment. 2008. 5 Tuberculosis prevention and treatment: a toolkit for planning, commissioning and delivering high-quality services in England. DH 2006. Available at: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_075621 6 French CE, Antoine D, Gelb D, Jones JA, Gilbert RL, Watson JM. Tuberculosis in non-UK-born persons, England and Wales, 2001-2003. Int J Tuberc Lung Dis. 2007;11(5):577-84. 7 Story A, Murad S, Verheyen M, Roberts W, Hayward AC. Tuberculosis in London - the importance of homelessness, problem drug use and prison. Thorax 2007;62:667-671. 2 7 Strategically, therefore, improved prevention and management of TB also fits with the PCT’s strategy to address health inequalities in Surrey. National policy drivers Surrey PCT is committed to good TB practices as set down in: The CMO Action Plan (Stopping Tuberculosis in England): published in Oct 04 by the Department of Health. It highlighted ten action areas including both case management and public health priorities. It had no funding and there was limited interest from Strategic Health Authorities (SHAs) to drive the plan forward. The NICE guidelines (Tuberculosis: clinical diagnosis and management of tuberculosis and measures for its prevention and control); published in 2006 by the Royal College of Physicians. It covered TB treatment in more detail (having developed the British Thoracic Society’s guidelines for best practice) and provided the evidence for a variety of interventions. It also came with no funding to implement change. The TB Commissioning Toolkit (Tuberculosis prevention and treatment: a toolkit for planning, commissioning and delivering high quality services in England): published in Jun 07 by the Department of Health. This document outlined a commissioning plan for PCTs, with reference to payment by results (PbR) and local service specifications and agreements. The Health Act 2006: The Code of Practice will help NHS bodies to plan and implement how they can prevent and control health care associated infections. Local strategic context Surrey PCT Strategic Commissioning Plan9 (awaiting ratification): Goal 1 of the Strategic Commissioning Plan is to improve the health and quality of life for (Surrey’s) population, reducing the gap in health inequalities. TB disproportionately affects the most vulnerable members of the population, exacerbating health inequalities. 8 French CE, Kruijshaar ME, Jones JA, Abubakar I. The influence of socio-economic deprivation on tuberculosis treatment delays in England, 2000-2005. Epidemiol Infect. 2008;8:1-6. 9 NHS Surrey Strategic Commissioning Plan 2008-13. (Awaiting ratification – Apr 09) 8 3. What is TB? Subcategories of disease 3.1 Notifiable disease Tuberculosis (TB) is a communicable disease and both worldwide and in the UK, it is considered a notifiable disease. Doctors have a legal duty to report cases of both TB and suspected TB under the Public Health (Control of Diseases) Act 1984 and the Public Health (Infectious Diseases) Regulations 1988 even if this breaches an individual’s confidentiality for the benefit of the public good. The risk of a contact acquiring infections depends on the nature and duration of their exposure. Table 1: TB risk from contact with an infected (pulmonary TB) person Nature of contact* Risk of infection None known 1 in 100,000 Casual social contact 1 in 100,000 School, workplace 1 in 50 to 1 in 3 Bar, social club Up to 1 in 10 Dormitory 1 in 5 Home 1 in 3 Nursing home 1 in 20 Source: New England Journal of Medicine 2003; 348:1256-66 * The duration of exposure is another major factor in interpreting these data 3.2 Cause of tuberculosis TB is caused by bacteria of the Mycobacterium tuberculosis complex (M. tuberculosis, M. bovis or M. africanum). It is most commonly spread by inhalation of infected droplets containing mycobacteria. 3.3 Types of infection Primary infection: When Mycobacterium tuberculosis is first encountered (primary infection), the immune system attempt to control infection. Some organisms may spread via the lymphatics or bloodstream to distant sites, forming small granuloma (tubercles). The tubercles may heal spontaneously or calcify and persist in an otherwise healthy individual. Only a small proportion of patients develop overt tuberculosis or further disease. Miliary TB: This occurs when primary infection is not adequately contained and invades the bloodstream resulting in severe disease. Secondary TB: This is due to subsequent reactivation of semi-dormant Mycobacterium tuberculosis and is usually precipitated by impaired immune function such as malnutrition, coexisting illnesses such as AIDS or immunosuppressive therapy. (Reactivation usually occurs in the apex of the lungs and can spread locally or to distant sites.) 3.4 Symptoms10 The onset of TB is insidious. Primary infection is usually asymptomatic. The presentation of secondary infection is variable and often non-specific. A high index of suspicion in patients from particular risk groups is essential to make a diagnosis. TB can affect all organs and body systems. Extra pulmonary TB being more common in children or the immunosuppressed: 10 Kumar P and Clark M. Respiratory Disease. In Clinical Medicine, Fourth Edition (1999), pp 745-827. London: WB Saunders. 9 General symptoms: fatigue, malaise, fever, weight loss, anorexia, failure to thrive, PUO (pyrexia of unknown origin). Pulmonary: Respiratory TB accounts for 60% of cases in the UK. Symptoms include chronic, productive cough with purulent ± bloodstained sputum. May result in lobar collapse, bronchiectasis, pleural effusion, pneumonia. Genitourinary: The commonest site outside the lungs often presents with "sterile" pyuria. There may be kidney lesions, salpingitis, abscesses and infertility in females and swelling of the epididymis in males. Musculoskeletal: arthritis, osteomyelitis and abscess formation, particularly in the spine (Pott's disease). Central Nervous System: tuberculous meningitis and tuberculomas. Gastrointestinal: mainly ileocaecal lesions but occasional peritoneal spread causes ascites. Lymph nodes: hilar, paratracheal or superficial node involvement. Palpable nodes may be initially tender, firm and discrete but later matted and suppurative with discharging sinuses. Skin: Erythema nodosum (represents an early immunological response to infection), erythema induratum. 3.4 Diagnosis 3.4.1 Use of chest xrays Chest xray (CXR) is essential even in non-pulmonary disease as there may have been pulmonary infection. Primary TB usually appears as a central apical portion with a left lower-lobe infiltrate or pleural effusion. Reactivated TB - there is no pleural effusion and lesions are apical in position. Severe disease with poor immune response can produce a picture like millet seeds over the CXR. Hence the name miliary tuberculosis. Pulmonary TB is unlikely with a normal CXR. Even patients with non-pulmonary disease may have CXR findings due to initial lung infection. In addition, other infections may mimic CXR appearance. Typical appearances of TB on CXR include: o Patchy or nodular shadows in the upper zones, loss of volume, fibrosis ± cavitation o Uniform 1-10mm shadows throughout the lung in miliary TB 3.4.2 Microbiological investigation Firm diagnosis rests on isolating the infecting organism and subsequent sensitivity testing can be used to guide antibiotic therapy. Isolation of the organism can be difficult. Possible specimens include: Sputum Early morning urine Biopsy material Samples are analysed by microbiology services using the following initial tests: Staining with Ziehl-Nielson (ZN) stain and rapid direct microscopy for acid/ alcohol fast bacilli. Culture on which can take 4-8 weeks due to slow bacterial growth. 10 Antibiotic sensitivity cultures take a further 3-4 weeks. Rapid detection of rifampicin resistance from cultured M. tuberculosis is now possible using molecular techniques. Results are fairly accurate and allow appropriate treatment to begin more promptly but results must still be confirmed with conventional techniques. Tuberculin skin tests eg Mantoux, are rarely used in the diagnosis of tuberculous disease but can detect previous exposure to the organism (or BCG vaccination) by provocation of a well established, cell-mediated immune reaction. More sophisticated methods for investigation are available, for example, genotypic methods such as DNA sequencing and polymerase chain reaction (PCR) and immunodiagnostic tests such as gamma interferon testing. However, their exact role in management continues to be debated11. Summary of the NICE guidance for diagnosis is available in Appendix 1. 11 11 Tuberculosis prevention and treatment: a toolkit for planning, commissioning and delivering high-quality services in England. DH 2006. Available at: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_075621 11 4. Incidence The total population of Surrey PCT is approximately 1.1 million. It is defined as an area of low TB incidence (ie less than 40 cases a year per 100,000). Incidence is calculated from formal TB notifications completed by clinicians. 4.1 By borough The table and chart below shows the TB incidence rate by borough across Surrey between 2004 and 2008. (The 2004-2006 data is the 3 year average.) Last year, in 2008, 86 cases were notified to the Surrey and Sussex Health Protection Unit for Enhanced TB Surveillance (ETBS). This reflects a rate of 8 per 100,000. Of these, the majority were working-age adults aged 20 to 44 years who had been born overseas. TB is not experienced uniformly across the UK. It is associated with more urban areas with greater ethnic diversity and more commonly affects those living with greater levels of deprivation and the same holds true in Surrey. For example, Woking Borough has the highest incidence of TB while the lowest rates are seen in Waverley and Tandridge boroughs. Chart 1: New notifications of TB per 100,000 population 2004 - 2008 30 25 20 15 10 5 0 2004-06 crude average 2007 Waverley Surrey Heath Guildford Tandridge Reigate and Banstead Mole Valley Epsom and Ewell Woking Spelthorne Runnymede 2008 Elmbridge Notifications per 100,000 population New notifications of TB per 100,000 population 2004 - 2008 Table 2: Notifications of TB by borough between 2004 and 2007 Surrey Local Authority Elmbridge Runnymede Spelthorne Woking Epsom and Ewell Mole Valley Reigate and Banstead Tandridge Guildford Surrey Heath Waverley TOTAL Population (Exeter 2006) 133,175 69,890 93,364 99,756 70,523 85,545 123,210 75,937 134,692 85,421 121,131 1,092,644 Averaged notifications received 2004-2006 /100,000 5 6 12 17 7 0 Total number of notifications received 2007 4 4 8 9 6 4 5 3 5 9 4 8 0 10 4 4 61 Source: Surrey and Sussex Health Protection Unit 12 Notifications received 2007/100,000 3 6 9 9 9 5 Total number of notifications received 2008 7 6 8 26 4 4 Notification s received 2008 / 100,000 5 9 9 26 6 5 6 0 7 5 3 6 10 3 7 10 1 86 8 4 5 12 1 8 Chart 2: Distribution of TB cases in Surrey by local authority Source: Surrey and Sussex Health Protection Unit 4.2 By hospital Much of TB management centres on the hospital providers which mirror the experience of TB within the neighbouring boroughs. In 2008 in Surrey, St Peter’s Hospital saw 45% (39 patients), the largest proportion of Surrey residents with TB. The 2nd largest group of Surrey residents, 21% (18 patients) were seen at various London hospitals. These patients were notified to the Surrey Health Protection Unit from the London TB Network and therefore relied on accurate notification to monitor this more disparate group of patients as there is no alternative means of cross-referencing data outside of Surrey. Chart 3: Pie chart showing the distribution of TB notifications by hospital - 2008 Pie chart showing the distribution of TB notifications by hospital - 2008 East Surrey Hospital 18 21% 6 7% Epsom General Hospital 6 7% 10 12% 7 8% Frimley Park Hospital Royal Surrey County Hospital St. Peter's Hospital (Chertsey) Non-Surrey hospitals 39 45% Data source: Surrey and Sussex Health Protection Unit Less Surrey residents were seen at the other 4 Surrey hospitals. 7% (6 patients) each were seen at East Surrey Hospital and Epsom Hospitals. Frimley Park Hospital saw 12% (10 patients) of Surrey residents while Royal Surrey County Hospital (RSCH) saw 8% (7 patients). However, due 13 to their geographical positions on the Surrey county borders, all of the hospitals except RSCH, see a large proportion of patients drawn from outside of Surrey and who may also come from areas of higher TB incidence. Due to its location near the centre of Surrey, RSCH sees predominantly Surrey residents. As a result, Surrey TB notifications for RSCH reflect approximately total numbers of TB cases seen at the hospital although it is possible there may be more cases of TB not ‘known to the system’ due to incomplete notification. The DH TB Commissioning Toolkit guidance recommends the following: “In lower incidence areas seeing few cases, the diagnostic service would normally be provided by a respiratory physician. If TB is confirmed, the patient is best managed by, or in conjunction with, a clinician (a respiratory physician or appropriately trained infectious disease physician) who sees at least 10 confirmed cases per year. In some low-incidence areas there may not be one clinician who sees this number alone, even though the total number seen in a particular hospital is 10 or more. If this is the case, then the alternatives are for all TB cases to be transferred to the care of the TB lead clinician (see below) or for management to be discussed on a multidisciplinary team basis, as with cancer cases. We further recommend that, in low-incidence areas, there is discussion of cases between hospitals on a multidisciplinary team basis, in order to pool experience and optimise management.” Based solely on Surrey notifications, RSCH clinicians see below this recommended minimum TB caseload. The acute trusts do not generally collect specific data regarding how many cases of TB individual consultants see. 4.3 By age The two main age groups affected by TB, both nationally and in Surrey, are the 20 to 44 year olds and the over 70 year olds. However, it is important to remember that TB can affect any age. The 20 to 44 year old group comprise mainly new entrants who have arrived from countries with higher rates of TB. (See later for detailed section on TB in new entrants.) The older age group who develop TB are a mixed group of UK- and overseas-born. Many are suffering a re-activation of past TB which is related to co-existing illness and immuno-compromise that have developed in later life. For example, it is for this reason that patients who may be considered for anti-TNF medication, often used to treat certain rheumatological disorders, require TB screening prior to commencing treatment. Chart 4: Age profile of TB notifications in Surrey (2008) 14 Age profile of TB Notifications in Surrey (2008) 20 18 16 Notifications 14 12 10 8 6 4 2 0 0-4 5-9 10-14 15-19 20-24 25-29 30-34 35-39 40-44 45-49 Source: Surrey and Sussex Health Protection Unit 50-54 55-59 60-64 65-69 70-74 75-79 80+ Age range Across Surrey, the total number of children with TB is small and the number fluctuates greatly over time. This has implications for clinical governance due to the low experience that any single paediatric unit in Surrey can gain and maintain. Recommendation: The DH Commissioning Toolkit recommends that where Paediatric Units have a caseload of fewer than 10 new cases of active TB per year, they are recommended not to treat a TB case without liaison with their adult TB colleagues and similarly, that adult TB clinicians are recommended not to treat childhood TB without involvement of the paediatric services. 4.4 Trends over time Based on the number of formal TB notifications, at a national level, incidence of TB is starting to level off after a steady increase between 1980’s and 2006. In Surrey, due to the small numbers, it is less easy to interpret the trends, as there is a natural fluctuation from one year to the next. Chart 5: TB notified in Surrey PCT by calendar year TB notified in Surrey PCT by calendar year 150 Number of cases 125 100 75 50 25 0 2001 2002 2003 2004 2005 Source: Surrey and Sussex Health Protection Unit Year 15 2006 2007 2008 4.5 Undiagnosed TB cases Additional caveats to interpreting the current trends of TB in Surrey relate to the lack of reliable data associated with inconsistent TB notification and the lack of active screening in various subgroups of the population, known to be at higher risk of TB. For example, Chart 6 shows the actual and predicted rates of TB for Surrey, East Sussex and West Sussex. Predicted rates have been estimated from the application of the national incidence of TB in different ethnic groups applied to the ethnicity breakdown of each borough population. With the exception of Surrey Heath, the other ten Surrey boroughs have lower actual rates of TB than would be expected according to the ethnic makeup of the borough. Table 3 quantifies the difference in rates and numbers of people suffering from TB. Overall in Surrey, in 2006, 91 cases were actually diagnosed however, 169 cases were predicted. This represents approximately 78 more cases than were actually seen. Had the predicted cases presented to the Surrey, TB services, there could have been 86% more demand than was actually experienced. Predictions vary according to various other socio-economic and demographic factors however, it is probably reasonable to say that there are several undiagnosed patients with TB in Surrey who are suffering unnecessarily from treatable TB disease and who also pose a health risk to the wider population. Chart 6: TB rates in Surrey, East and West Sussex 2006 TB Rates Surrey, East and West Sussex 2006 WEST SUSSEX SURREY EAST SUSSEX (INC BR & HOVE) Worthing District (B) Mid Sussex District Horsham District Crawley District (B) Chichester District (B) Arun District (B) Adur District Woking District (B) Waverley District (B) Tandridge District Surrey Heath District (B) Spelthorne District (B) Runnymede District (B) Reigate and Banstead District (B) Mole Valley District Guildford District (B) Epsom and Ewell District (B) Elmbridge District (B) Wealden District Rother District Lewes District Hastings District (B) Eastbourne District (B) The City of Brighton and Hove (B) Predicted rate Actual rate 0 5 10 15 20 Rate per 100000 Source: Surrey and Sussex Health Protection Unit 16 25 30 35 Table 3: Surrey boroughs and difference between expected and actual numbers of people with TB 2006 Elmbridge District (B) Runnymede District (B) Spelthorne District (B) Woking District (B) Epsom and Ewell District (B) Mole Valley District Reigate and Banstead District (B) Tandridge District Guildford District (B) Surrey Heath District (B) Waverley District (B) Totals Borough population (Exeter 2006) 133,175 Actual rate / 100,000 9.4 Actual number of cases 13 Predicted rate / 100,000 16.4 Predicted number of cases 22 Difference between predicted vs actual number of cases 9 % difference between predicted vs actual cases 74% 69,890 93,364 99,756 6.2 12.2 16.7 4 11 17 15.3 17.4 22.8 11 16 23 6 5 6 145% 42% 37% 70,523 85,545 8.7 5.0 6 4 21.4 11.2 15 10 9 5 145% 126% 123,210 75,937 134,692 4.7 1.2 6.1 6 1 8 15.6 13.5 13.4 19 10 18 13 9 10 234% 990% 121% 85,421 121,131 1,092,644 18.4 4.3 16 5 91 14.2 10.9 12 13 169 -4 8 78 -23% 155% 86% Recommendations 1. There should be active case seeking in groups known to be at higher risk of TB. 2. Using the enhanced TB surveillance (ETBS) process, improve formal notification of people with TB who are ‘known’ to TB services. 3. Consider annual audit between laboratories and HPU in order to triangulate the notifications of TB cases (and ensure de-notification as appropriate). See p18 recommendation (4). 4.6 Incidence in new entrants A detailed review of the incidence of TB in New Entrants and the rationale for a proposed change in screening is at Appendix 2. In summary, during the 18 months of a study conducted by Surrey and Sussex Health Protection Unit (2006-07), there were 4004 new entrants to Surrey from countries with an incidence of TB >40 per 100,000 (approximately 2500 new entrants to Surrey annually). 89% of these were successfully screened by CXR at Port of Entry or after they had arrived in Surrey. Of these migrants, 83% were under 36 yrs of age. Of the 4004 new entrants who were screened at the Port of Entry or referred by the HPU for screening by chest X-ray, 62 individuals were subsequently referred for further investigations of abnormal chest X-ray findings. The outcome of the referrals is unknown but as far as is known, there have been no new active cases of TB detected by the current system of CXR at Port of Entry or shortly after entry although one individual is known to have been commenced on chemoprophylaxis. The TB specialist nursing service in Surrey now informs the HPU of new entrant referrals who do not subsequently present for assessment. Instead, the vast majority of cases of TB develop in new entrants within the first 5 years after entry to the UK which is likely to be due to factors such as socio-economic deprivation associated with being an immigrant in the UK. 17 5. Surveillance Surveillance is the process of systematic collection, collation and analysis of data with prompt dissemination to those who need to know, for relevant action to be taken12 Aim of tuberculosis (TB) surveillance To provide the information required in Surrey to: identify outbreaks monitor trends inform policy inform development of services monitor the success of the Tuberculosis programme In Surrey, the Surrey and Sussex Health Protection Unit (SSHPU) are responsible for surveillance. Current data sources used for TB surveillance in Surrey 5.1 Routine data sources 5.1.1 Statutory notification of Infectious diseases (NOIDS) forms Clinicians have a statutory duty to report all suspected or clinically diagnosed tuberculosis cases to the Proper Officer, usually the Consultant in Communicable Disease Control (CCDC). This information is used to monitor the trend in the incidence of tuberculosis in England and Wales, and locally to initiate control measures. The prime purpose of this system is speedy detection of possible outbreaks and epidemics. If diagnosis of tuberculosis is later proved incorrect they should be de-notified. Bacteriological confirmation of diagnosis may take weeks. In practice, instead of NOIDS forms, clinicians tend to complete the Enhanced TB Surveillance (ETBS) forms. 5.1.2 Laboratory reports Laboratory reports are sent on a voluntary basis to SSHPU by all 5 acute trusts in both paper form and in an electronic form on the ‘CoSurv’ database. Clinical data is very limited so the reports act more as a prompt to check the patient is known to the TB Community Service. Unfortunately, the Co-Surv database cannot be interrogated which limits its broader usefulness. 5.1.3 Death certificate data The Office for National Statistics (ONS) publishes data on deaths and of residents in England and Wales annually. Causes of death, including tuberculosis, are included in death registration information required for all deaths. 5.1.4 Tuberculosis incident and outbreak surveillance (TBIOS) TBIOS is a passive system of national tuberculosis incidents and outbreaks surveillance (TBIOS) in England and Wales which is established at the HPA Centre for Infections to inform the evidencebase for the purpose of public health management of such events. Reports are obtained from a number of sources including regional health bulletins, news reports, prisons surveillance however patient identifiable information is not included in the database. In reality, TBIOS has had little impact in Surrey because there are no routine reports ‘back to the field’ 5.1.5 Enhanced TB surveillance in England, Wales and Northern Ireland (ETBS) The minimum dataset includes notification details, demographics, clinical and microbiological information on cases of tuberculosis reported by the clinicians to the local co-ordinators, then via HPA Regional Units to CfI in Colindale. ETBS provides an annual corrected analysis of reports by age, sex, and ethnic group, country of birth, site of disease and region of residence. 12 World Health Organisation. Protocol for the assessment of national communicable disease surveillance and response systems. Guidelines for Assessment Tests. WHO Geneva. 2001. www.who.int/emc 18 Completion of ETBS forms is patchy across Surrey. ASPH routinely completes these forms. ESH does not complete them at all. The other 3 hospitals, FPH, RSCH and SASH complete these forms irregularly. Successful completion of ETBS appears to correlate with the availability of a Community TB nurse as these forms are increasingly completed by them. Approximately, 21% of Surrey patients were not seen in Surrey hospitals. They were all seen at London hospitals where ETBS forms were completed for the London TB Registry. These notifications were then passed to SSHPU. It is not otherwise possible to know the numbers of patients treated outside of Surrey. It is reported by some clinicians that there is some confusion regarding the timing of notification of TB since not all suspected cases actually result in confirmed disease. For example, a proportion of suspected cases may be diagnosed with an aytpical mycobacterium. Equally, a small proportion of cases may be strongly clinically suspected as having TB but microbiological evidence is not available. To manage the ETBS data, the Health Protection Agency (HPA) has a web-based database, ETS. It acts as a store of ETBS data however it has various limitations which reduce its practical usefulness. For example, on the ETS database, clinical outcomes such as ‘death’ or ‘transfers out’ cannot be updated if they occur within 6 months of treatment starting. There is no opportunity to record the dual diagnosis of HIV. Additionally, ETS cannot be used ‘in the field’ eg in hospital outpatient clinics, by the TB Nurses for their real-time clinical case load eg managing cases and contacts. As a result, it tends to present an administrative burden as data must also be entered on ETS in addition to clinical records. In response to this, the CCDC, Kevin Carroll, has developed a separate database – see later. 5.1.6 Treatment outcome surveillance (TOS) Treatment outcome surveillance is part of the ETBS in England, Wales and Northern Ireland. It is an essential tool in determining the effectiveness of the national effort to control tuberculosis, by providing information on the proportion of patients who either completed treatment, died, were still on treatment after one year, had treatment stopped, were transferred out or who were lost to follow up prior to finishing treatment. The completion of TOS forms in Surrey, like ETBS forms, is similarly patchy. ASPH routinely completes these forms. ESH does not complete them at all. The other 3 hospitals, FPH, RSCH and SASH complete these forms irregularly. 5.1.7 United Kingdom Mycobacterial Network (MycobNet) Information of all cases of tuberculosis confirmed by culture at the reference Centres is collected at CfI. Information includes species (M tuberculosis, M bovis and M africanum), drug sensitivity results and some demographic and clinical data. Information produced through MycobNet is used to monitor trends in drug sensitivity, and is the basis of surveillance of M bovis. MycobNet provides an annually corrected analysis of mycobacterium complex isolates by drug sensitivities, age, sex, region and previous history of tuberculosis. 5.2 Local data collection and databases In SSHPU, there are two other databases – HPZone and the SSHPU local TB database. 5.2.1 HPZone HPZone is a regional HPA database, currently used by both Surrey and Sussex HPUs. It is used in the day-to-day management of both individual cases and outbreaks of all communicable diseases and other health protection problems. For TB, it tends to be used most to manage TB outbreaks or incidents and initial registration of cases (rather than their ongoing management by the acute trusts / community TB nurses). 19 5.2.2 SSHPU local TB database SSHPU local TB database has been designed to allow day-to-day case management by the Community TB Nurses with the primary aim of producing a single tool that is useful for both clinical care and surveillance while minimising the administrative burden of data inputing. It allows linking of cases, contact tracing and interrogation in order to be able to produce reports. 5.3 Special groups There is currently no separate surveillance system in place for TB monitoring of prisons or the homeless however, data on new entrants is collected. Port Health inform SSHPU of new entrants’ arrival and an initial TB risk assessment is entered on the New Entrant database. 5.4 Standards for surveillance The DH TB Commissioning Toolkit13 specifies the standards for national surveillance of TB. See appendix 5. It should also be useful to monitor performance of TB services. Standards relate to the following areas which are detailed more specifically in the Toolkit: Reporting of new cases by clinical teams / local TB services Collection and forwarding of information on reported cases by HPA local and regional services Treatment outcomes Microbiology results Molecular strain typing Feedback and reports Audit trail 5.5 Summary of data systems and TB surveillance in Surrey Overall, the surveillance of TB in Surrey is fragmented and very much dependent on the good will of a few individuals at the different hospitals. Amongst its Surrey peers, ASPH appears consistently to be more committed to the importance and practicalities of TB surveillance. There is no single-best database. The national ETS database (HPA) is already out of date and requires cross-referencing with other databases eg Co-Surv and HPZone to optimise accuracy. Recommendations 1. Acute Trusts must ensure compliance with statutory reporting of both suspected and confirmed TB cases as part of the legal requirement of clinicians. 2. SSHPU and clinicians should work together to increase understanding of the ETBS system which is the main method for clinicians to notify TB cases to the SSHPU. 3. Use the TB Commissioning Toolkit standards to audit performance of TB services. See p15 Recommendation (3). 4. Consider requesting that future versions of the ETBS form include TB ‘risk groups’. 13 Tuberculosis prevention and treatment: a toolkit for planning, commissioning and delivering high-quality services in England. DH 2006. Available at: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_075621 20 Current services 6 The core TB service and inter-relationships with other stakeholders 6.1 Inter-relationships In Surrey, TB services interact (or could interact) with various different services and agencies as detailed in chart 7 below. Chart 7: Key relationships and stakeholders to core TB Services Mental health services SABP Health of Homeless Prison health Outbreak management - HPU TB SERVICES DAAT HIV services Port Health Mother and child health Immunisations Occupational health Health of New Ne entrants w Abbreviations: SABP – Surrey and Borders Partnership Mental Health Trust DAAT – Drugs and Alcohol Team HPU – Health Protection Unit 6.2 The core Surrey TB Service The core Surrey TB service consists of various independent and semi-independent organisations that Surrey PCT works with to provide health care for the benefit of its population. The Community TB Nurse Team (provided by Surrey PCT’s provider arm, Surrey Community Health) The Acute Trusts: ASPH – Ashford and St Peter’s Hospitals NHS Trust ESH – Epsom and St Helier Hospitals NHS Trust FPH – Frimley Park Hospital NHS Foundation Trust RSCH – Royal Surrey County Hospital NHS Trust SASH – Surrey and Sussex Hospitals NHS Trust Surrey and Sussex Health Protection Unit The relationships between each element of the core service have evolved over time, particularly regarding both the clinical and financial responsibility for services users’ care. Many of the agreements in place at present are implicit but where the relationship has changed over time, there is now some tension at times. Part of the challenge of this health needs assessment will be to make more explicit the boundaries of the different relationships so that there is greater clarity over duties and responsibilities for our common patients. However, the PCT has a duty to commission appropriate services and where 21 this is not covered by the Payment by Results ‘Tariff’, there should be a service level agreement (SLA) in place to specify the detail. (See section 15.4). 7 Laboratory services 7.1 Current service provision Laboratory support for the management of TB in Surrey is provided through general microbiology departments at ASPH, SASH, the Partnership Laboratory of RSCH and FPH and the HPA-regional laboratory hosted by ESH. A questionnaire was sent to all the laboratories requesting information about the TB services provided and for their opinions of how TB laboratory services could be provided for Surrey residents in the future. Laboratories for 4 of the five Acute Trusts have responded and the response from Epsom & St Helier Acute Trust is awaited. The questionnaire and results are detailed at Appendix 4. At ASPH, SASH and the Partnership Laboratory of RSCH and FPH, microscopy is performed daily on Monday to Friday while a weekend service is available on request. Culture is provided in house at each of the 3 laboratories although PCR and gamma-interferon testing are routinely sent away, mainly to London acute trusts. A large proportion of this work is sent to the Mycobacterium Reference Laboratory at The London Hospital. Looking ahead, ASPH, SASH and the Partnership Laboratory agreed that TB services may be better served by a central Surrey laboratory that was able to perform all the culturing and dependent on volume of workload, perhaps, PCR and gamma interferon testing. The ‘basic’ task of TB microscopy could also be centralised but only if transport was sufficiently reliable both inand out-of hours to provide a timely response to clinicians. It was generally agreed that identification and sensitivity testing be left to a Mycobacterium Reference Laboratory. 7.2 Recommended TB service standards The DH TB Commissioning Toolkit14 details the recommended methodologies and criteria to ensure the rapid, accurate diagnosis of active TB. With the needs and expectations of patients and their clinicians in mind, it also addresses: Supporting the early confirmation of appropriate treatment; Instigating suitable measures to reduce transmission; and Providing timely evidence to help identify and investigate possible outbreaks. It provides specific recommendations and standards regarding the management of microbiological samples, culture, isolation and identification with particular attention to the time-scale involved in getting test results and the communication of those results to the relevant parties. These standards are detailed in Appendix 6. It has not been possible for this health needs assessment to investigate how closely Surrey’s laboratories conform to the standards specified. 14 Tuberculosis prevention and treatment: a toolkit for planning, commissioning and delivering high-quality services in England. DH 2006. Available at: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_075621 22 7.3 Use of laboratory services in latent TB and screening: Tuberculin skin test (TST) vs gamma-interferon test In asymptomatic persons exposure to, and potential infection with tuberculosis is demonstrated by a positive tuberculin skin test (TST) or more recently from a positive blood based immunological test (gamma-interferon test). Those with a strongly positive TST are considered as having been infected with tuberculosis. TSTs are cheap and relatively easy to perform but, they have to be interpreted within a certain time scale. Patients who do not return or delay returning will have either no results or an inaccurate one. False positives may be a result of BCG vaccine or people being sensitised with opportunistic environmental mycobacterial, severe infection, ie miliary tuberculosis may result in a negative skin test. The new interferon-gamma tests will only react to mycobacterium tuberculosis and to a few species of environmental mycobacteria, they do not react to BCG protein. NICE recommend an initial TST, followed, if positive, by an interferon-gamma test to confirm positivity. (Economic modelling of the 2 tests provided most support, on the grounds of cost effectiveness, for this 2 stage approach.) Gamma-interferon tests are considerably more expensive than TSTs – at approximately £40 per test. However, these costs must be offset by the benefit of less false positive TB testing. This is important when the costs of chemoprophylaxis - providing and monitoring treatment and the risk of its potential harms, are considered. 7.4 Funding of gamma-interferon tests In Surrey at present, screening occurs on an ad hoc basis, usually as a result of an incident. Those who are offered screening do not pass via their GPs and therefore associated investigations are not funded directly under GPs’ budgets. In the past, many of the gamma-interferon tests (and the associated courier costs) were ‘swept up’ under the acute trusts’ microbiology department budgets however, an increasing awareness of this ‘funding loophole’ and an increase in absolute numbers of tests ordered (as a results of growing clinical use of the test)) has resulted in tension over who should pay. According to the DH Commissioning Toolkit15, while laboratory investigations for a person referred to secondary care for suspected with TB falls within the Tariff, screening activities, such as contact tracing and incident management, are not funded by Payment by Results (PbR) and therefore, there should be a local service agreement agreed between the PCT, Community provider and acute trusts. An example of a Service Level Agreement (SLA) is available in the Toolkit. Recommendations: 1. The PCT (Commissioning), PCT (Provider) and Acute Trusts should agree a local service agreement which includes contact tracing, screening and the associated costs of investigations such as gamma interferon tests, mantoux, chest xrays etc. 2. Acute Trusts should audit TB laboratory standards (with reference to the standards detailed in Appendix 6) to establish a baseline and to be able to quantify any future progress made. (Ultimately, this will need to be part of the PCT-Acute Trust service level agreement and service specification.) 15 Tuberculosis prevention and treatment: a toolkit for planning, commissioning and delivering high-quality services in England. DH 2006. Available at: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_075621 23 8 Current provision of TB care for people with or suspected to have TB 8.1 Overview TB services are largely centred on the acute trusts. Diagnosis, treatment initiation and monitoring are provided at the acute trusts however, much of the response to treatment and associated patient welfare is mainly monitored by either a hospital-employed or community (PCT-employed) TB Nurse. Current guidance recommends that all patients with TB should have a named case worker who can help the patient through their long treatment. In reality, in most cases locally, this function is provided by either the community or hospital TB nurse. Current NICE16 guidance details the recommended treatment for individuals suspected of or diagnosed with TB and it is expected that clinicians would manage patients in line with these recommendations except in patient-specific circumstances. It has proved difficult to assess quality of clinical care received by Surrey patients with TB because of the general lack of audit of NICE guidelines in acute trusts. Similarly, there is a dearth of outcome monitoring for patients. Anecdotally, most Surrey patients appear to complete treatment within the expected timeframe and rarely default from treatment however, few data are actually collected to support this view despite the formal HPA surveillance process in place. Recommendations: Surrey PCT should work with the Acute Trusts to ensure that the following is agreed as part of the service level agreement for TB service provision. 1. Acute Trusts should conduct regular audit of the management of their patients with TB in order to ensure compliance with current NICE guidance. This should be linked through each acute trust’s Clinical Governance Committee and be part of the recommendations made to the Acute Trust Board. 2. Acute Trust physicians should complete outcome monitoring as part of their contribution to routine surveillance. (See surveillance recommendations p18.) 3. All patients should have a named case worker and know how to contact them for advice. (As this is a capacity issue, please see the section on TB Nurses p28-29.) 8.2 Role of GPs and primary care health care professionals Diagnosis of TB is almost never confirmed in general practice and diagnosis and treatment of TB are best provided by specialist services. TB is best diagnosed and managed by experienced specialists17. While primary care clinicians may suspect a diagnosis of TB, a formal diagnosis including treatment and care plans is best made by specialist service providers. Primary care does have an important role in providing support to the patient through the treatment period; Recommendations: 1. Ensure that GPs and other primary and community care staff are aware of the symptoms and signs of TB, local TB services and local arrangements for referring patients with suspected TB including the need for urgent referrals. (See Section 8.3) 2. Consider linkage with GP tutors to incorporate TB as part of core GP continuing professional development (CPD) on health protection. 16 Tuberculosis: Clinical diagnosis and management of tuberculosis, and measures for its prevention and control. 2006. NICE. Available at: http://www.nice.org.uk/nicemedia/pdf/CG033niceguideline.pdf 17 Tuberculosis prevention and treatment: a toolkit for planning, commissioning and delivering high-quality service sin England. DH. 2007. 24 8.3 Managing TB patients within two weeks The CMO’s Stop TB Action Plan recommends that all patients have access to secondary care diagnostic and treatment teams within two weeks. Where there is strong clinical suspicion on the part of the GP of active infectious TB, most services will aim to assess the patient within two days. According to the DH TB Commissioning Toolkit, TB may be excluded from the choice requirement (Choose and Book) on the grounds that it is a rapid access service. In this way, a well-organised, integrated community TB service is able to justify exemption on the same grounds as maternity or mental health services. Consequently, it is not necessary for TB services to be provided within the Choose and Book framework. However, all efforts should be made to ensure that, where practical, patients have the opportunity to negotiate a mutually convenient appointment. In Surrey, patients are generally seen swiftly in secondary care and within the recommended timescale, however, this is usually done by creating ‘extras’ on an already full outpatient list. Recommendations: 1. Ensure that those administering the allocation of appointments for patients with suspected TB are aware of the 2 week guidance. (GPs may wish to consider annotating referral letters with a notice highlighting the urgency as is done with the management of cancer where the ‘2 week rule’ is flagged routinely.) 2. Consider whether there are alternative means of streamlining the patient pathway, for example by establishing clinics that integrate multiple aspects of the TB service eg screening and ‘routine‘ outpatient care. 8.4 Acute adult services There is a named TB lead adult physician at each of Surrey’s 5 acute trusts. All the TB leads are adult respiratory physicians. ASPH is the only acute trust to run a TB clinic that is separate from the general respiratory outpatients. Hospital-based TB Nurses At ASPH, there is a TB nurse, part-funded by Surrey Community Health and part-funded by ASPH, who works alongside the hospital TB physicians and provides support to patients both at the hospital and in their homes. She also provides any contact tracing generated by the patient and deals with ward referrals. FPH have a trust-employed TB nurse who looks after Surrey patients, however the service does not include home visits or community contact tracing beyond the immediate family. SASH does not have a hospital-based TB nurse who provides care or contact tracing for Surrey residents. (However, there is a PCT-employed TB nurse who provides a full community and hospital service for West Sussex residents.) RSCH has no hospital-based TB nurse. For both SASH and RSCH, patient support and community contact tracing is provided by the Community TB Nurse but must be initiated by TB notification – see Section 9. (A similar arrangement existed for ESH Surrey patients until Jan 09 when the new trust-employed TB nurse started.) In reality, since formal TB notification is known to be patchy, it is possible that some patients may not benefit from the services of a community-based TB nurse including extended contact tracing as required. Inpatient facilities Of the acute trusts, only SASH has a specific hospital policy on the management of someone with TB however the lead TB physician is known in all the acute trusts and in-house referrals can be made to either the lead TB physician or the hospital-based TB Nurse. 25 Isolation facilities for the care of a patient with suspected pulmonary TB are available at all of the acute trusts however, specialist negative pressure rooms are only available at FPH. Recommendations: 1. Ensure that all cases of TB are notified formally to SSHPU in order to trigger the Community TB nurse service. (See Surveillance Section 5.) 2. Review the provision of TB nurses across the county in order to provide high quality TB service for all regardless of geographical location. (See TB Nurse Section 9) 8.5 Acute paediatric services There are very few children in Surrey who are found to have TB. This presents a significant clinical governance challenge in the high quality management of TB in such a low incidence area, to ensure that clinicians have adequate experience to manage cases appropriately. Children suspected of having TB are usually the ‘contact’ of an adult close to them such as a parent or teacher and their TB is often detected through contact tracing or outbreak/incident management. Children who fall into the category of ‘latent’ TB (who are then treated with chemoprophylaxis) frequently fall ‘between stools’ in Surrey as the current TB Service manages adults better. Surrey hospital practice Both Royal Surrey County Hospital and Frimley Park Hospital routinely refer children found to have TB to tertiary centres in London (for example, the Royal Brompton Chest Hospital) for their subsequent TB management. Children with TB at Ashford and St Peter’s Hospital and Surrey and Sussex Hospital are managed in-house by paediatricians who see relatively large numbers of children suspected of having TB and this is related to the demographic profile of both hospitals’ local ‘catchment’ area. Epsom Hospital tends to refer children with suspected TB to the lead paediatrician for TB at Queen Mary’s Childrens Hospital (co-located with St Helier’s Hospital, Sutton). Common themes 1. Taking over care of children with TB diagnosed overseas: A common problem at all the hospitals is that although new diagnoses may be few, the Paediatricians end up taking over the care of children whose TB treatment has been started overseas. It can be near impossible to confirm microbiological diagnosis as, is common in many cases of TB in children, no specimen was originally collected and treatment was started empirically. 2. Treating ‘well-looking’ children: It can be difficult to ensure compliance with treatment over its long duration in children who look well. Parents may feel anxious to give treatment with its risk of adverse effects or simply forget as the imperative to treat goes. This is particularly the case with latent TB which is more common in children. 3. Liaison with Community Paediatricians is becoming increasingly difficult (and is likely to remain so for the foreseeable future) as it is reported there is a relative recruitment crisis for Community Paediatrics. This contributes to the loss of experience (and confidence) of GPs and other community healthcare professionals in detecting, diagnosing and managing TB in the community. Recommendations: 1. Agree a Paediatric patient pathway (after cost-benefit analysis) to facilitate high quality care for children in Surrey with either latent or active TB. (This should take into account the 26 particularly low incidence of TB in Surrey children but allow for those affected to still receive high quality care.) 2. Ensure raised awareness of both public and health care professionals for the possibility of TB in children, especially amongst communities at greater risk of TB. (See recommendations for GP awareness on p22). 3. Ensure that parents and guardians of children – and the children themselves – understand the importance of adherence with TB treatment and have sufficient appropriate information to inform their decisions. 8.6 Prescribing anti-TB treatment The NHS (Charges for Drugs and Appliances) Regulations 2000 (the Charges Regulations)18 were amended in September 2007 to allow medication for the treatment of tuberculosis to be provided free of charge in TB clinics or via a patient group direction. Regulations 5 (supply of drugs by HAs, NHS Trusts and PCTs) and 6A (supply of drugs under patient group directions) of the The National Health Service (charge for Drugs and Appliances) and (Travel Expenses and Remission of Charges) were amended as follows: “No charge shall be made and recovered under this regulation from a patient who is accepted by the person supplying the drug as suffering from tuberculosis in respect of any drug supplied to that patient for the treatment of tuberculosis” TB services and hospital pharmacies should ensure that drugs supplied to treat TB should be free of prescription charges for patients attending TB clinics or treated under a patient group direction. FP10 forms (GP and Community prescriptions) cannot be used under this arrangement. It was recommended that if prescribing in the community was required, a patient group directive (PGD) might be easier to use. The Surrey Community TB Nurse team has confirmed that patients receive their medications free of charge from their hospital when they attend their outpatient appointment. Problems occasionally arise when patients mislay medication or run out before their next appointment. There is currently no patient group directive in Surrey which in situations like this, can complicate patients’ care. At present, in such a situation, the TB Community Nurses will ask a ‘willing’ consultant at the local hospital to provide a prescription at short notice and without seeing the patient. Recommendation: Consider the introduction of a Patient Group Directive for Community TB nurses to minimise disruption of a patient’s adherence to treatment in the event of medication issues in between outpatient appointments. 8.7 Management of multiply-drug resistant tuberculosis (MDR-TB) There are currently no cases of MDR-TB in patients being treated in Surrey however, health professionals need to be aware of the possibility of this. NICE recommend that a risk assessment for drug resistance should be made for each patient with TB, based on the risk factors listed below: history of prior TB drug treatment; prior TB treatment failure contact with a known case of drug-resistant TB Supply of TB drugs to patients – changes to regulations and advice on implementation. Available at: http://www.dh.gov.uk/en/Publichealth/Communicablediseases/Tuberculosis/DH_078136 18 27 birth in a foreign country, particularly high-incidence countries7 HIV infection residence in London age profile, with highest rates between ages 25 and 44 male gender. NICE recommend: 1. The TB service should consider the risk assessment for drug resistance and, if the risk is regarded as significant, urgent molecular tests for rifampicin resistance should be performed on smear-positive material or on positive cultures when they become available. 2. Response to treatment should be closely monitored in patients at increased risk of drug resistance. If there is no clinical improvement, or if cultures remain positive after the 4th month of treatment (‘treatment failure’), drug resistance should be suspected and treatment reviewed with a clinician experienced in the treatment of MDR TB. 3. The options for organising care for people with MDR TB should be discussed with clinicians who specialise in this. While the views of the patient should be sought and taken into account, and shared care should be considered, in Surrey, this is very likely to require a tertiary referral. 28 Table 4 showing the current distribution of Acute Trust TB services in Surrey ASPH ESH FPH RSCH SASH 6 10 7 6 7% ? Also treats London borough patients 12% ? Also treats Hampshire & Berkshire patients 8% ? Also treats Hounslow patients 7 Only Surrey patients 2 Dr Wood* Dr Nordstrom Yes Alison Byers Funded by Surrey Community Health and ASPH 2 Dr Cooke* Dr Rahman Yes Proseetha Pradesh ESH-employed (Newly appointed for Surrey patients) 3 Col Hoad* Dr Knight Dr Ho 2 Dr McAllister* Dr Alexander 7% ? Also treats West Sussex patients 2 Dr Jenkins – for Surrey (Dr Acharya* – for West Sussex ie The bulk of TB work at SASH)) Yes Pam Hoad FPH-employed No Covered by Surrey Community Health TB Community Nurse No Covered by Surrey Community Health TB Community Nurse Yes To start shortly Dr Richard Chivas St Mary’s Children’s Hospital No No No No specific TB lead Dr Godden (Respiratory Paediatrics) Dr Hussain Number of Surrey patients with TB 2008 % of total Surrey patients Total No TB patients seen at acute trust No of Chest Physicians treating TB patients * Trust TB lead TB Nurse working at hospital for Surrey patients? Domiciliary visits done by hospital-based TB nurse? Paediatric TB lead 39 45% Dr Diab Hadad 29 9 Surrey PCT Community TB Nurses 9.1 Overview In general in the UK, the management of suspected and actual TB is mainly provided in secondary care and this is no different in Surrey. Most patients with TB are treated on an outpatient basis with few requiring inpatient facilities. While the five acute trusts in Surrey manage much of the diagnosis and initial management of patients with suspected or actual TB, the ‘glue’ that holds the TB service together is the Surrey Community Health (Surrey PCT provider arm) Community TB Nurse Team. Community TB Nurses are theoretically involved in the following activities: Referrals from GPs for patients with suspected TB Liaising with the acute trusts to ensure that patients on TB treatment are monitored appropriately Domiciliary visits to ensure treatment adherence Contact tracing BCG clinics Outbreak / incident management eg screening questionnaires, risk assessment including referrals for further diagnostic tests, managing the ‘worried well’ Liaison with the Health Protection Unit to ensure formal notification Surveillance New entrant screening Health education o Raising TB awareness for HCPs o Raising TB awareness for the public 9.2 Staffing Surrey Community Health administer the TB Community Nurse Team as part of the Children’s Services. For some considerable time, the Surrey Community Health TB service was run by a single Band 7 nurse working 0.8FTE. Since Summer 2008, a 2nd TB nurse (Band 6) has joined, also providing 0.8FTE. In January 2009, a 3rd TB nurse (Band 5, working 0.8FTE) joined the team. Band 7 nurses and above can work autonomously and make independent TB assessments including referrals for diagnostic tests such as xrays and tuberculin skin testing (although this often depends on the referral protocols for each individual acute trust). A Band 7 TB nurse should also be able to refer patients to a secondary care consultant. In contrast, Band 6 and Band 5 nurses have respectively less clinical autonomy which therefore limits the breadth of work that they can provide unsupervised. The DH TB Commissioning Toolkit recommends that outside London, there should be 1 FTE TB Nurse for every 50 notifications. While the nurse banding is not specified, the assumption is for a Band 7 nurse, which would reflect the more autonomous and specialist nature of TB nursing. 9.3 Distribution and capacity of the Community TB Team Surrey Community Health is commissioned by Surrey PCT to provide community TB services throughout Surrey, including the area usually covered by Central Surrey Health, the other main community provider in Surrey. Across Surrey, the Community TB Service is expected to provide different elements of service complementary to the service provided by the Acute Trust of the area. For example, at Frimley Park Hospital, while patients with TB can attend the hospital-employed TB nurse at the hospital, there is no domiciliary service provided. Community TB work in the Frimley Park locality, for example, contact tracing, outbreak management or new entrant screening is picked up by 30 Community TB Team. In contrast, at Ashford and St Peter’s Hospital, due to the large proportion of Surrey patients with TB, the Community Team have allocated one of their nurses to the full-time care of this locality’s population. This results in both community and hospital-related TB work being completed by a single TB nurse that patients can come to know and trust. Currently, the capacity of Surrey’s TB nurse specialist team is limited to management of patients on anti-TB medication, their contact tracing and outbreak management as is immediately necessary. Fortunately, anecdotally, the vast majority of patients in Surrey are reported as largely adherent to treatment regimens without direct observation of treatment (DOTS) and there are currently no patients in Surrey with multiply-drug resistant TB (MDRTB) that would require enhanced management. The current capacity of the TB Community Nurse Team would not adequately allow enhanced patient case management in the event of more patients needing DOT. There is currently no formal administrative support for the TB Community Nurse Team and they are therefore responsible for administrative work such as sending out patient appointments, chasing patients who DNA (do not attend) and inputting patient details on their new database. 9.4 Clinical supervision and continuing professional development As local specialists in the field of TB nursing, it is more difficult for the TB Community Nurses to be adequately clinically supervised by their own line management and there are no formal arrangements for clinical supervision within the existing TB service. Possible options for clinical supervision would include one of the TB leads at an Acute Trust or a Consultant in Communicable Disease Control (CCDC) at Surrey and Sussex Health Protection Unit. As the management of TB evolves over time, it is important that Surrey’s Community TB nursing team have sufficient capacity to allow them time for both clinical supervision and continuing professional development (CPD). Recommendations: 1. Surrey PCT should commission Surrey Community Health to ensure adequate and appropriate provision of TB Nurse specialists in line with current guidance (both quantity of FTE staff and appropriate banding). However, this may involve devolving certain services to non-TB health care professionals eg BCG immunisation. (See BCG Section p40) 2. Ensure adequate administrative support in order to free TB Community Nurses to expand their clinical work. (This expansion includes tasks such as active case finding in high risk groups and raising awareness of TB in Surrey.) 3. Surrey Community Health should ensure that TB Community Nurses are suitably clinically supervised to ensure that high quality patient care is maintained as part of good clinical governance. 4. Surrey PCT should clarify the role of Central Surrey Health in TB, especially in TB incident management. 31 10 TB Control - Screening for TB In Surrey, screening for TB is provided on an opportunistic and ad hoc basis, most often in response to contact tracing for a known patient with TB and less commonly, to TB outbreaks. As discussed previously, the capacity of the TB Nurse Team has limited their ability to actively case-seek in higher risk groups of the Surrey population, such as through outreach to BME communities, in the five Surrey prisons, the homeless and people with drug and alcohol problems. On average, it has been estimated that each index case of TB results in 6.5 contacts19 that must be followed up and investigated. This work is often ‘invisible’ as the focus tends to be on the number of actual TB notifications. Recommendation: Consider developing Surrey TB service to provide active case finding for TB through outreach to higher risk groups. 10.1 Contact tracing Contact tracing in Surrey is conducted by both the community and the hospital-based TB nurses in line with current NICE guidance and with advice from the Surrey and Sussex Health Protection Unit. The NICE guidance summarises guidance to deal with contact tracing in the following circumstances: Household and close contacts Cases in schools Cases in community childcare Cases in hospital inpatients Cases on aircrafts Cattle to human transmission 10.2 Higher risk groups The population groups considered to be at higher risk of TB are: BME New entrants from countries with high TB incidence (ie over 40 per 100,000 population) Asylum seekers, refugees and illegal new entrants Prisoners Street homeless People with drug and alcohol problems Occupational risk groups eg healthcare workers It is important that TB resources are directed at these groups in order to most effectively use resources, particularly in Surrey’s low TB incidence environment. 10.3 BME There are currently no reported BME community awareness programmes for TB in Surrey. The Surrey PCT BME Development Worker has been involved with individuals with TB and has acted in an advocacy role on an individual basis but the work on TB has been opportunistic and ad hoc rather than through a systematic programme of health promotion. 19 Ansari S et al. Refine tuberculosis contact tracing in a low incidence area. Respiratory Medicine 1998; 92(9):1127-1131. 32 A health needs assessment for BME groups is planned by Surrey PCT to address general health needs but especially those conditions that disproportionately affect BME populations such as coronary heart disease, stroke, diabetes and tuberculosis. There are anecdotal reports of concern amongst BME groups about the risk of stigma and as a result, conditions such as mental illness and tuberculosis are often hidden by families. There is a targeted BCG immunisation programme since 2005 but anecdotal reports suggest that this is not as widely known to both BME communities and their health care professionals as would be hoped. Recommendations 1. Surrey PCT should consider completing a BME Health Needs Assessment. 2. Increase (and maintain) awareness of TB, including through the media and community groups, and develop initiatives to support local awareness-raising among high risk groups. 3. Increase awareness and availability of BCG clinics eg Via Health Visitors, Practice nurses and via primary schools in targeted areas. 10.4 Port Health and the care of new entrants Surrey and Sussex Health Protection Unit have completed a study of the screening of new entrants in Surrey. The results are detailed in Appendix 2. The UK has had a policy of screening entrants from high-risk countries for several years now through the ‘Port of Arrival’ scheme (Hogan et al 2005). New arrivals from high-incidence countries (40/100,000 or over) who are intending to stay for six months or more are identified by immigration staff and referred for initial clinical and radiographic assessment at port health control units. Local consultants in communicable disease are then notified of the results for people moving into their area and are expected to organise appropriate follow-up. In addition to the Port of Arrival scheme, the Home Office has more recently introduced a TB screening system for asylum seekers at fast-track induction centres20 In Surrey, a small number of new entrants, identified by Port Health (usually from either Gatwick or Heathrow Airports) are notified to the Surrey & Sussex Health Protection Unit (SSHPU) who in turn, notify the Community TB Nurses to arrange screening. However, the process is widely recognised as failing for a variety of reasons: a. High risk new entrants do not always receive a chest xray at their Port of Entry and the responsibility for this is shifted from Port Health to SSHPU. However, SSHPU are not responsible for individual patient care and have no direct means of referral into secondary care eg for chest xrays, therefore, the SSHPU relies on the new entrant registering with a GP. b. Communication between Port Health and SSHPU is reported as being inconsistent; not every new entrant identified as higher risk for TB is thought to be referred to the SSHPU. c. New entrants identified by Port Health are not yet registered with a GP and some may have difficulties doing so. GPs act as a formal gateway both to the Acute and Community elements of the TB service. Therefore, without GP registration, there is no means for the Acute Trusts to recoup costs of managing new entrants referred to them informally from the TB Community Nurse service. (Therefore, there is no separate healthcare funding for these New Entrants who are not formally registered with a GP. As a result, even if 20 NICE. Clinical Guidance 33 (Full version). Appendix D. Available from: http://www.rcplondon.ac.uk/pubs/books/TB/TBappendices.pdf 33 accepted by the TB Community Nurses for TB care, the Acute Trusts bear the costs of managing suspected and confirmed cases of TB, rather than the PCT. Recommendations 1. Surrey PCT, Surrey and Sussex Health Protection Unit and the Port Health at Heathrow and Gatwick airports should work together to improve the new entrant referral process including for example: a. GP registration b. Referral to a Health Visitor for Under 5’s 2. Surrey PCT should work with Surrey GPs to facilitate prompt GP registration for new entrants. 3. New Entrant health screening: Surrey PCT should consider a locally enhanced service (LES) agreement with GPs to provide holistic health screening targeted at specific needs of new entrants based on the recommendations of a New Entrant Health Needs Assessment. 4. New Entrant Health Care Needs Assessment (HCNA). Surrey PCT should consider completing an HCNA in order to understand the potentially diverse health needs of New Entrants. There is likely to be an increased need for health care related to immunisations and reproductive, mental, nutritional and dental health. 10.5 Asylum seekers, refugees and ‘illegal’ new entrants It is not clear how many asylum seekers, refugees or illegal new entrants may be living in Surrey at any one time however, it is known that London is a popular destination for many people in this situation and there is likely to be ‘spill over’ into Surrey. There are also Home Office Detention Centres near Gatwick Airport and Heathrow Airport which border Surrey to the east and west respectively. Many of the countries that asylum seekers arrive from have a high incidence of TB however, it is also likely that there may be a ‘healthy migrant’ effect that mitigates their initial TB risk. (The ‘healthy migrant effect’ suggests that it is often the healthier people who leave their country of origin and therefore, are not fully representative of the relatively poorer health of their country and of those that stayed.) In fact, as detailed in the section on New Entrants, it is often as a result of migration to the UK and the higher risk of living in poverty, without access to their previously supportive social networks and access to healthcare, that migrants become ill. Entitlement to NHS treatment The Department of Health recently issued guidance in Nov 08 regarding entitlement to NHS treatment. It details the extent to which asylum seekers, refugees and failed asylum seekers may access both primary and secondary care. It is considered by many to be complex and fairly difficult to interpret, particularly in the case of ‘failed’ asylum seekers. It is likely that both new entrants and health care staff (especially reception administrative staff) may not be fully aware of their entitlements which may hinder access to timely TB care. Detailed guidance is available on the DH website21. No specific reference is made regarding the care of new entrants with suspected TB who are considered to be ‘illegal’. It is important to highlight that regardless of entitlement, the guidance states: 21 http://www.dh.gov.uk/en/Healthcare/International/AsylumseekersAndrefugees/index.htm 34 “Certain services are exempt from charges for everyone. This includes treatment provided solely in an Accident and Emergency Department, treatment of certain specified communicable diseases (although prescription charges may be payable unless exempt) and compulsory mental health treatment.” Tuberculosis is one of the specified communicable diseases referred to. Prescription charges are not payable for prescriptions issued from a hospital (or through a patient group directive) as detailed in Section 6.3.6. Welfare support and advice Surrey County Council’s HIV Liaison Coordinator provides advice about services (health, social and non-governmental) and welfare support for new entrants (including asylum seekers and refugees) who are HIV positive. There are a number of patients with TB co-morbidity who fall within this provision, however, the social welfare of asylum seekers with TB but without HIV becomes the responsibility of the 11 individual borough councils. However, certain patients with TB, for example, those with only limited leave to remain in the UK, may have ‘no recourse to public funds’ and not be eligible to apply for statutory support. The numbers of patients in Surrey anticipated to be in this category are likely to be small however, they potentially raise difficult moral and potentially ethical issues for health care workers. Anecdotally, none of the patients currently receiving care under the TB service in Surrey is thought to be destitute however, given some of the factors associated with TB and the challenges experienced by many new entrants in registering for health care, it is quite possible that some patients may be suffering financial hardship in silence and might benefit from some social welfare support. This is important, not only morally, but clinically. In addition to anti-tuberculous medication, patients with TB should have adequate housing and good nutrition in order to aid physical recovery, optimise compliance with treatment and reduce the likelihood of TB transmission to others. Recommendations 1. Surrey PCT should inform all GP surgeries of the guidance relating to entitlement to NHS services for asylum seekers, refugees and other categories of new entrants to the UK. It is important that the message about the universal free access to anti-tuberculosis treatment is understood. 2. The TB Nurses should have sufficient knowledge of entitlement to NHS treatment and how to access social welfare support in order to provide signposting for patients with TB who may also be suffering social hardship. 35 10.6 TB in Prisons There are five prisons in Surrey. They cater for 1133 female prisoners and 1622 male prisoners, a total of 2755 people. HMP Bronzefield is a private prison while the other four are run by the Prison Service and their healthcare is now the responsibility of Surrey PCT. Table 4: Prisons in Surrey - operational capacity, category and prisoner ethnicity. Prison Operational Male / capacity female Category HMP Send 280 Female HMP Bronzefield Female HMP High Down 465 + 12 Mother & Baby Unit 360 + 16 Juvenile Unit 1105 Male Closed Training prison Closed (Private prison) Closed Training prison Category B HMP Coldingley 517 Male Category C All prisons 1133 1622 2755 Female Male Total HMP Downview Female Average monthly throughput 240 per month High turnover Ethnicity White British 65% White other 6% BME 29% Not known White British 28% White other 11% BME 61% White British 56% White other 8% BME 36% White British 53% White other 7% BME 40% Surrey prisons health need assessments Surrey PCT is currently undergoing a programme of health needs assessments of its prisons as it is acknowledged that in addition to the usual spectrum of health problems, there are various medical conditions that prisoners are more at risk of and which may also be caused or exacerbated by the prison environment. Prisoners’ risk of TB Prisoners are at increased risk of TB for a variety of reasons. These include pre-imprisonment socioeconomic factors such as homelessness, lower socioeconomic status and higher unemployment, co-morbidities such as HIV, poor nutrition and drug and alcohol use. In addition, environmental conditions in prisons may facilitate transmission of TB infection, such as overcrowding, poor hygiene and inadequate ventilation. Story et al (2007) estimated that there was a prevalence rate of 208 per 100,000 London prisoners compared to an England prevalence of 15.5 per 100,000 population. While several demographic factors may be different between the general population of London versus the Surrey population, within the prison system, the differences may not be as marked. This is related to the overcrowding in the prison service and Surrey’s close proximity to London which means that Surrey prisons often receive prisoners from around the South East and London. As a result, it may not be an unreasonable assumption that the rate of TB in London prisons may be much different from in Surrey prisons. Lower incidence than expected In recent years, there have only been known to be approximately 1 or 2 prisoners receiving treatment for TB per year. However, this is surprising given the risk factors mentioned previously, the increasing proportion of prisoners known to come from higher TB risk countries and the high 36 proportion of prisoners who are of BME ethnicity and who may therefore be at increased risk of TB due to either their country of birth or of their parents’ / grandparents’ countries of birth. Care must be exercised when calculating expected numbers of prisoners with TB because the Surrey prison population is small, but based on Story’s rate of 208/100,000 prison population, one would expect to see between 5 and 6 prisoners with TB at any one time in Surrey prisons. The lower than expected numbers of prisoners with TB may be due to a number of factors: Small overall numbers of prisoners which obscures the natural variation in TB incidence. Enhanced surveillance forms do not routinely record ‘Prisoner’ status (unless completed within the ‘Occupation’ section) which could theoretically be missing prisoners with TB. (However, this is unlikely because the overall number of patients with TB is small enough that TB Community Nurses are informally aware of most patients with TB in Surrey.) Inadequate detection of TB in the prison service relating to, for example, inadequate TB contact tracing, health screening on prison entry or the prisoner’s presentation to health services. Inadequate continuity of medical care for prisoners known to have TB. It is known that prisoners who may have been diagnosed with TB in one prison (and even have started treatment) may not have their management continued when they transfer to another prison. Recommendations: NICE22 has issued guidance on the prevention of TB in prisons and these are all relevant for prisons in Surrey: 1. Healthcare workers providing care for prisoners and remand centre detainees should be aware of the signs and symptoms of active TB. TB services should ensure that awareness of these signs and symptoms is also promoted among prisoners and prison staff. 2. Prisoners should be screened for TB by: a. a health questionnaire on each entry to the prison system then b. for those with signs and symptoms of active TB, a chest X-ray, and three sputum samples taken in 24 hours for TB microscopy, including a morning sputum sample. 3. All prisoners receiving treatment for active or latent TB should receive directly observed treatment (DOT). 4. Prison medical services should have liaison and handover arrangements to ensure continuity of care before any prisoner on TB treatment is transferred between prisons. 5. If a prisoner is being treated for active or latent TB, the prison medical services should draw up as early as possible a contingency plan for early discharge, which could happen directly from a court appearance. This plan should include firm arrangements for clinical follow-up and treatment monitoring in the intended district of residence, and should take into account that there may not be a fixed residence arranged for the prisoner after release. The prisoner should be given contact details for a named key worker, who will visit and monitor the prisoner after release and liaise between services involved. 6. Prison service staff and others who have regular contact with prisoners (for example, probation officers and education and social workers) should have pre- and on-employment screening at the same level as for healthcare workers with patient contact. 22 Tuberculosis: Clinical diagnosis and management of tuberculosis, and measures for its prevention and control. 2006. NICE. Available at: http://www.nice.org.uk/nicemedia/pdf/CG033niceguideline.pdf 37 10.7 Street homeless It is estimated that there are probably less than 100 people sleeping on the streets in Surrey. For example, approximately 15 – 20 rough sleepers use night hostels each in Guildford and Woking however, there are likely to be some who remain on the street. While the situation in Surrey is likely to be different, it may be useful to understand the picture seen in London. Analysis23 of the data available in London suggests that the main groups still on the streets are: a continuing flow of ‘new’ rough sleepers entrenched rough sleepers resistant to service provision migrants without recourse to public funds, including Eastern Europeans not in work (estimated to account for at least 15% of rough sleeping in London) Rough sleepers in London tend to: be predominantly male (88%) and usually white (77%), though more likely to be from ethnic minorities than 10 years ago usually aged between 25 and 45 years (only 7% under 25, 28% over 45) have a range of support needs (48% alcohol, 41% drugs, 35% mental health) often have an institutional history – 39% have been in prison (though not necessarily recently), 12% in care and 5% in the armed forces. Recommendations: The recommendations issued by NICE in the management of street homeless are useful for Surrey: 1. Active case finding should be carried out among street homeless people (including those using direct access hostels for the homeless) by chest X-ray screening on an opportunistic and/or symptomatic basis. Simple incentives for attending, such as hot drinks and snacks, should be considered. 2. Healthcare professionals working with people with TB should reinforce and update education about TB, and referral pathways, to primary care colleagues, social workers and voluntary workers who work with homeless people. 10.8 People living with HIV/AIDS HIV/AIDS is well-established as a risk factor for TB. In the UK, it is estimated that approximately 3% of people diagnosed with TB also have HIV/AIDS; from a global perspective, particularly in Africa and parts of Asia, the proportion is much higher. As such, this co-morbidity is increasingly common in new entrants. It is therefore important that patients presenting with one infection, should be offered screening for the other in line with UK national guidelines for HIV testing24. Across the country, including Surrey, HIV services are better developed than those for TB and therefore, patients with HIV are more likely to be offered additional screening for TB. The reverse is less consistent, ie patients who present with TB are not consistently offered HIV testing with its attendant need for pre-test counselling. Some clinicians, including physicians and both community and hospital-based TB nurses feel less confident to raise the issue of HIV/AIDS with their patients with TB. 23 Rough Sleeping 10 years on. From the streets to independent living and opportunity. Discussion paper. Apr 08. Department for Communities and Local Government. Available from: http://www.communities.gov.uk/documents/housing/doc/Disscussionpaper.doc 24 UK National Guidelines for HIV Testing 2008. BHIVA (British HIV Association.) Available at: http://www.bhiva.org/files/file1031097.pdf 38 Despite this, there are good links between HIV and TB services in Surrey and clinicians feel able to refer patients between services as appropriate. It is also important to remember that standard TB screening, eg with use of the Mantoux tuberculin skin test, is much less accurate in people with HIV/AIDS. In this situation, alternative testing using an interferon test eg T-spot, is preferable. Recommendations 1. Health care professionals providing TB or HIV/AIDS services should routinely coordinate screening tests for the other infection (ie HIV or TB respectively) for their patients, especially if other risk factors are present. This may involve referral to the other service or with sufficient appropriate training, the screening may be provided within the original service. For example, a patient with TB should routinely be offered HIV testing. HIV testing may occur after referral to the HIV/AIDS service or from a TB physician or nurse who has undergone sufficient and appropriate training to deliver the pre- and post-test counselling required. 2. Interferon tests should be used to screen for TB in someone known or suspected as having HIV/AIDS (rather than relying on Mantoux tests). 10.9 Occupational risk groups Occupational health assessment is the responsibility of the employer and as such, does not fall within the immediate remit of Surrey’s core TB service. However employees, who are found, at occupational screening to be at higher risk of TB, should be referred into the TB Service as for any individual requiring further investigation for suspected TB. The Department of Health’s ‘Green Book’ (Immunisation against Infectious Disease) details the occupational groups where people are more likely than the general population to come into contact with someone with TB: Healthcare workers who will have contact with patients or clinical materials Laboratory staff who will have contact with patients, clinical materials or derived isolates Veterinary and staff such as abattoir workers who handle animal species known to be susceptible to TB, e.g. simians Prison staff working directly with prisoners Staff of care homes for the elderly Staff of hostels for homeless people and facilities accommodating refugees and asylum seekers Unvaccinated, tuberculin-negative individuals aged under 35 years in these occupations are recommended to receive BCG. There are no data on the protection afforded by BCG vaccine when it is given to adults aged 35 years or over. Since not all healthcare workers are at an equal risk of TB, there should be a clinical risk assessment when the use of BCG is being considered for a healthcare worker over 35 years of age. 39 11 Managing tuberculosis incidents and outbreaks A tuberculosis incident is defined as where potential transmission of tuberculosis to non-household contacts is identified, warranting wider public investigation beyond routine contact tracing. This includes potential, suspected or confirmed tuberculosis transmission in: An educational setting involving a child, student or member of staff A prison, reception centre or detention setting A healthcare setting involving a patient or a health care worker Exposure of passengers or staff on an aircraft Where a patient or member of the public necessitates public health action, such as applications made under the Public Health (Control of Diseases) Act, 1984 Tuberculosis outbreaks are a subset of incidents, where two or more linked cases of tuberculosis have occurred in non-household contacts. In general, in Surrey, it is the Surrey and Sussex HPU who are alerted of possible TB incidents / outbreaks and they would lead on its management. Initial actions often include convening an incident meeting with the key stakeholders. The stakeholders usually include, as a minimum: The school / nursing home / organisation affected (If a state school, Surrey CC may send a representative from the Schools Department) Surrey and Sussex HPU Community TB Nurse Acute trust Treating Physician +/- Microbiologist Surrey PCT Logistics of outbreak management TB incidents and outbreaks tend to be highly time-consuming and labour intensive because of the often high numbers of people requiring screening. They also have highlighted shortcomings of the current IT system in place. Large numbers are assessed for their risk (using questionnaires) and for many, Mantoux testing is completed. A proportion of people will need further investigation, such as using chest xray or gamma interferon testing and of these, a proportion will need referral to secondary care and TB treatment. There have been a number of incidents in Surrey over the last few years. The results of these incidents are detailed in Table 5 (below). The majority have involved primary schools and health care settings. The volume of work is not routinely monitored however, approximate numbers of people affected by TB incidents are detailed below. Incidents can disrupt the TB service because of their sudden and unpredictable impact on work-load, the requirement for prompt risk assessment and also for their potential to create varying degrees of public alarm that must be managed. They present a risk to all the organisations involved, largely due to the potential risk to reputation. In addition, since Spring 2009, there have been a number of TB incidents in schools which have resulted in the screening of large numbers of children. While the exact results have yet to confirmed, the key issues have been similar to previous incidents and highlight the importance of having a standard operating procedure for coordinating these incidents amongst the key agencies involved. 40 Table 5: Approximate number of people screened by Surrey Community TB nurses for TB (excluding ‘in-house’ screening conducted by Acute Trusts and Surrey and Borders Partnership Trust) between 2006 and Spring 2009. Outbreak / Incident management Total number affected Incident meetings / visits Questionnaires Mantoux tests Chest xrays Gamma interferon tests BCG immunisation Referrals to secondary care Treated for TB Number involved 2006 181 13 Number involved 2007 186 13 Number involved 2008 539 17 Number involved 2009 (to Spring 2009) 152 10 181 181 181 80 72 63 37 6 61 13 36 29 66 136 21 1 3? Or 10 34 85 0 90 116 15 7 9 2 0 Areas of conflict Recent TB incidents have accentuated points of conflict arise due to lack of clarity regarding: Responsibility for specific tasks of stakeholders eg Surrey and Sussex HPU vs Acute Trusts vs Community providers vs PCT is not always clear. Funding for large numbers of (or higher cost) consumables: o Interferon tests o Patient information leaflets (TB Alert) o Stationery and stamps Cross-boundary issues between community providers ie Surrey Community vs Central Surrey Health. (For example, Central Surrey Health (community provider) are not contracted to provide TB services even for patients in their geographical boundaries) Linking TB cases Increasingly, more sophisticated laboratory techniques are available, such as DNA fingerprinting and molecular typing however, they are not currently routinely used in all outbreaks. Recommendations 1. Agree Surrey standard operating procedure for managing TB incidents in Surrey and alert key stakeholders. 2. Plan for ‘surge capacity’ to better manage outbreaks / incidents especially regarding the funding of extra resources eg gamma interferon testing. (A possible solution is establishing a contingency fund above and beyond an agreed ‘normal’ expected annual workload – based on previous years’ outbreak experience.) 3. Increase administrative support available for Community TB Nurses. 4. Ensure an effective IT system is in place that allows outbreaks, especially cases and contacts, to be correctly recorded. 5. Surrey PCT/SSHPU need to liaise with the relevant employers/regulatory authorities to confirm the occupational health BCG provision for higher risk facilities eg schools, nurseries, prisons etc. 41 12 TB Prevention - BCG immunisation Since the abolition of universal school age BCG vaccination in 2005, the DH has recommended that all 0-15 year olds are screened for high risk TB status and offered BCG vaccination if appropriate. While the targeted programme is generally well-accepted by individuals and communities assessed to be at higher risk of TB, there is also the risk of causing offence and potentially stigmatising targeted individuals. In many countries, TB has negative connotations which may be difficult to overcome. Ashford and St Peter’s Hospital Trust is the only acute trust in Surrey to routinely offer BCG vaccination to neonates and this is administered in the Maternity Unit. Surrey and Sussex Hospitals (SASH) do not routinely provide this in the Maternity Unit however, there is now an active BCG immunisation service in the surrounding area that is well attended by women and their babies from the local BME community. BCG clinics are run in a variety of locations around Surrey however, staffing levels limit regularity of clinics and there are occasionally last-minute cancellations due to staff non-availability. Historically, the PCT funded GPs to provide BCG but when this service shifted to Surrey Community Health provision, the funding did not shift accordingly. Currently, apart from the East Surrey locality BCG clinics, BCG delivery is coordinated (and often provided) by the TB Community Nurse team. The TB Community Nurse team have attempted to train other health care professionals in BCG vaccination but this is has not consistently resulted in course attendees actually going on to run BCG clinics alone. For the time being, TB nurses continue to administer the bulk of BCG in Surrey and are drawn away from TB management, contact tracing and screening. Table 6: Surrey Community Health BCG clinics in Surrey as at Jan 09 Locality Clinic North West Shepperton Health Centre Maybury Centre South West Guildford – Jarvis Centre East Camberley Children’s Centre / Berkshire Road Clinic East Surrey Hospital Number of clinics per month 2 2 3 (To reduce to 2 – Jan 09) 2 1 Age of those attending Comments 0 – 16 >6yrs – Mantoux <6yrs – BCG only 0 – 16 >6yrs – Mantoux <6yrs – BCG only 0 – 16 >6yrs – Mantoux <6yrs – BCG only 0 – 16 >6yrs – Mantoux <6yrs – BCG only BCG Baby clinic – well attended >6 Catchup clinic – poorly attended Lead by TB Community Nurses Lead by TB Community Nurses Lead by TB Community Nurses Lead by TB Community Nurses Run by Surrey Community Health Immunisations Team Recommendations: 1. Considering fully moving the responsibility of BCG vaccination delivery to local immunisation teams / primary care (rather than diverting the scarce TB Nurse resources from TB work that can only be done by a TB-trained nurse). 2. Continue to target schools with high proportions of pupils at higher risk of TB eg BME communities, to raise awareness of the Targeted BCG programme but while remaining sensitive to the risk of stigmatising individuals and communities. 3. Encourage working between the Immunisation Team and BME Community Development worker to facilitate culturally-sensitive targeted health promotion materials on BCG (and other relevant health subjects). 4. Surrey PCT’s Immunisation and Vaccines Committee should review provision of BCG immunisation in Surrey to ensure that only those targeted to receive BCG actually receive it. 5. Acute trusts should review their Maternity Unit policy regarding neonatal BCG immunisation for babies at higher risk of TB. 43 13 Patient views of TB services 13.1 Surrey PCT TB Patient Survey results - 2009 A survey of the views of Surrey PCT patients with TB was carried out in June – July 2009. Forty paper copies of the survey (in English) were sent to TB nurses across the county who agreed to distribute them to their patients currently in treatment. 13 surveys were returned – approximately 33% response rate. The questions and their results are detailed in Appendix 6. Who replied? In summary, 8/13 were aged 18-40 years and 10/13 were female. 7/13 were non-British born Asians and 4/13 were non-British born Black Africans. (The remaining 2 were White British people investigated for TB prior to starting chemotherapy for cancer.) How long for patients to be referred to TB Services? 5 people quantified the time it took for their GP to diagnose and refer them to TB Services and the average time from first presentation of symptoms to when they were seen in secondary care was 13 weeks. Language and information issues While 9/13 people stated that English was not their first language, only 2 needed help to understand their health professional and a family member was asked to help. Most had received written information and were happy with it in English. All respondents felt they understood their TB but approximately one third of the respondents would have liked more information, often about whether their TB was eradicated and if it might recur. Transport 9/13 respondents attended the hospital by car with the others using a combination of public transport. 4/9 said that travelling to another hospital for their treatment would not be a problem however 5/9 respondents would find it either quite or very difficult. Comments about travel mainly related to the cost (eg fares or car parking) or the time lost for those that worked. Overall feeling for Surrey TB Services All 11 who responded to the question regarding respect considered they were treated with respect with only 1 person feeling they could have been treated any better. Patients particularly appreciated when their TB Nurse helped them out by bringing medicine to their homes. 7/9 respondents to the question of satisfaction were either very or sufficiently satisfied with their TB care with only 1/9 people not satisfied and 1 person not being able to remember. Several of the general comments referred to dissatisfaction with the time it had taken for their GPs to suspect their TB and for the lack of information on TB available in primary care. Worryingly, one patient had been told by her GP that ‘we don’t have TB in our village’. 13.2 General results from other areas’ patient surveys The Surrey PCT survey findings are based on the responses of only 13 people however, they are not dissimilar from findings from other area’s patient surveys as outlined in Sections 13.2.1 – 13.2.5. 13.2.1 Poor general awareness of tuberculosis amongst health care professionals Patients have reported that it takes a long time to be referred from primary care to the TB service but that once they are referred, their subsequent management occurs quickly. Patients report having to see either the same health care professional (HCP) several times before tuberculosis is raised as a possible diagnosis or that they need to see multiple primary care HCPs before they are referred. 44 13.2.2 Public/community awareness of TB Some patients have reported that their families and friends know little about TB and this can cause great anxiety and a degree of shame because there is still some stigma about the diagnosis. Similarly, there is a wider community anxiety which often stems from inadequate information related to the health protection aspects of TB. This can manifest itself in over-reactions from for example, schools (staff and other parents) who are overly anxious about the need for exclusion any other public health measures. Additionally, extra care may be required to inform the general public about TB to prevent this becoming a wider issue relating to racism or jingo-ism in view of the greater proportions of BME groups and new entrants affected by TB. 13.2.3 Cultural and language issues TB disproportionately affects BME and new entrants and other issues are reported to affect individuals and families affected by TB. These include: 1. Language: English may not be the first language and some individuals may struggle to communicate either verbally or through written media or both. While written information may be available in other languages, TB Services need to be aware that this may still be an issue if literacy in that language is a problem. Anecdotally, formal translation services are rarely used in Surrey and instead, patients’ relatives provide this service informally. However, it is important to realise that this can bring about its own problems if the translation is modified and the patient cannot express themselves fully or accurately. 2. Cultural differences: It is important to understand that that differences in culture may affect the way in which the TB services are delivered and their acceptability to the service user. For example, women in some cultures may find it embarrassing or unacceptable to see a male doctor. Similarly, it has been reported that some women with TB may be reluctant to present themselves for medical care if they are worried that their ability to care for their families may be impaired. Other examples of possible cultural differences may relate to some patients being reluctant to take medication while fasting. 13.2.4 Availability of info leaflets / material appropriate for children In Surrey, the vast majority of people with TB, are adults however, there are a small number of children affected by TB each year. Some families may wish to have information about TB available in a more child-friendly format to aid explanation. 13.2.5 Access to care Both patients and staff have raised issues regarding equity of access to health care. These include issues relating to knowledge of the services available to them, geographical access and affordability of ‘low ticket’ items such as transport to and from health services. TB disproportionately affects those who may have less disposable income and many find these ‘hidden charges’ of NHS healthcare difficult to afford. While many of the people who are seen by Surrey TB Services, either for treatment or for screening, appear to have knowledge of the NHS and how to access care, there are likely to be a proportion, particularly new entrants, who may be less familiar with ‘the system’. It can be bewildering to attend a busy GP surgery or hospital, particularly if you don’t speak English well or are not familiar with what the costs might be or your general rights to health care. 45 Recommendations 1. Raise awareness of TB amongst both primary care health care professionals (especially amongst GPs) and communities, specifically targeting awareness in the higher incidence areas and those areas where incidence is expected to be higher than is currently experienced. 2. Ensure that staff who work with TB Service users are able to provide information about how they can access NHS health care or signpost to other resources eg Patient Advisory Liaison Service (PALS) and /or the Department of Health leaflet introducing NHS services. http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuida nce/DH_4122587 3. Ensure there is information available for patients about state help with costs such as travel, prescription charges etc and that service users are alerted to the possible options available to them. 4. Ensure access to information about TB suitable for the specific user eg child-centred, appropriate language etc. (The charity, TB Alert, charges a small fee to PCTs for use of their well-written information leaflets.) 46 14 Effectiveness of services and funding 14.1 Surrey TB Clinical Network and TB Leads The CMO’s Stop TB Action Plan recommended that every PCT have a designated TB co-ordinator and that Acute Trusts identify a TB lead. The aim is to create a strongly led, well-coordinated and adequately resourced local TB programme so that all those working to deliver the programme have a clear focus on what needs to be achieved and the best practice for doing so. The Surrey TB Clinical Network has been established for approximately 1-2 years and meets every six months. It is gradually gaining momentum however attendance, particularly from several Acute Trust TB leads, has been patchy. It is hoped that in time, the TB Clinical Network might become more of a resource for clinicians to share and develop good practice in Surrey. 14.2 Use of audit Despite publication of NICE guidelines to help shape clinical management of patients with or suspected of having TB, there is little evidence of audit of the care of these patients in the acute trusts. During the drafting of this health needs assessment, it has proved difficult to establish a baseline of care currently being provided because so little data is routinely collected by providers. 14.3 Funding of acute and community TB services Most of the acute trust provision for the management of patients either with TB or suspected as having TB, is funded under the Payment by Results (PbR) ‘Tariff’ in the same way that any outpatient management is funded. It is therefore expected that for these individuals, registered with NHS GPs, all relevant diagnostic tests and treatment would be covered by either inpatient or outpatient Tariff. For example, allowance has been made under PbR for monthly follow up over the usual 6 months of treatment, attracting a separate outpatient appointment Tariff for each visit. For pragmatic reasons, in order to expedite the care of a patient suspected to have TB, the current TB Community service often appears to have been ‘short-cutting’ the formal secondary care referral process. GPs, if the actually patient is registered, may be bypassed which can then cause some confusion about who is ultimately responsible for the funding of investigations used to diagnose the patient. Is it the PCT or Acute Trust that foots the bill? This is a particular problem for individuals detected as being at risk of TB who have been identified by contact tracing, outbreak management screening and new entrant screening. Planning ahead, in the event that active TB case finding, for example in high risk groups, were to be developed, the ‘system’ may be at further risk of being ‘short-cut’. The Tariff does not cover any community services such as home visits, telephone support or directly observed treatment (DOT) in the community. These community services are vital to facilitate a patient-centred approach which is considered key to increasing adherence to treatment25. (Ultimately, treatment adherence is important to ensure that the incidence of drugresistant strains of TB does not increase and hinder the control of TB in the population.) Additionally, funding for outbreak management is a significant bone of contention in Surrey. As discussed in the section on outbreak management, these incidents are labour-intensive to manage and can consume large volumes of consumables. In addition, since NICE guidance recommended the increased use of the more costly interferon tests, further pressure has been put on budget allocations, which by their very nature, can be difficult to predict. 25 Tuberculosis: Clinical diagnosis and management of tuberculosis, and measures for its prevention and control. 2006. NICE. 47 The DH TB Commissioning Toolkit recommends that local agreements are drawn up between PCTs, Acute Trusts and Community providers in order to agree the details of the services that are to be provided by each party. Recommendations: 1. Agree patient pathway with stakeholders in line with best evidence. 2. Establish local service level agreements between PCT and Acute Trusts to ensure appropriate funding of the different elements of TB care including both Tariff and Non-tariff services. 3. Consider the establishment of an ‘Outbreak contingency fund’ which could provide insurance over and above a pre-agreed level of annual outbreak management. 4. Clarify responsibility with key stakeholders for different components of TB service eg Management of contact tracing, screening (active case finding), BCG immunisation etc. 48 15 Options and Models of care The DH TB Commissioning Toolkit highlights the principle underpinning TB services in areas of low TB incidence is that the care of the individual patient presenting in that area must be delivered to the same overall standard as that which the patient would receive if diagnosed in an area where TB is more common. In essence, this may be either hospital out-reach or community in-reach. The models by which the responsibilities for care of a TB patient are fulfilled may differ depending on other local factors. The options available include employing: A specialist nurse with responsibilities additional to those for TB (eg Also managing asthma, chronic obstructive pulmonary disease) Specialist TB nurse(s) but shared between neighbouring trusts Specialist TB nurse(s) covering several trusts but employed by eg the local Health Protection Unit (HPU) 15.1 Using programme budgeting to compare outcomes in other areas with money spent Programme budgeting is a tool being developed nationally that allows some comparison of clinical outcomes against expenditure for a given health disease category. At present, TB falls within the ‘Infectious Disease’ programme budgeting category however, the total budget is predominantly spent on care for HIV/AIDS. It is also possible to compare Surrey against all PCTs in England or its Strategic Health Authority neighbours. Ideally, it is best to compare Surrey with PCTs which are more similar from a socioeconomic and demographic perspective. The ONS has grouped such similar PCTs as ‘clusters’. The ONS cluster that provides the most similar comparator group for Surrey is the ‘Prospering Southern England’ cluster. This consists of the following PCTs: Buckinghamshire PCT Berkshire West PCT Cambridgeshire PCT Mid Essex PCT Oxfordshire PCT West Hertfordshire PCT West Kent PCT At present, programme budgeting is a fairly blunt tool. For example, the Infectious Disease programme budgeting category (PBC) includes the funding of healthcare directed at HIV/AIDS which involves costly treatments and it is not possible to accurately separate out the expenditure for TB. However, it has been possible to exclude HIV/AIDS treatments to give an ‘Other Infectious Disease’ subgroup although this still includes large amounts of expenditure such as pneumonia. Despite these shortcomings, it is still useful to compare Surrey PCT’s ONS cluster peers in order to identify good practice and different ‘ways of doing business’ that improve outcomes and make better use of health resources. Comparing years of life lost (YLL) due to mortality from TB by total health spend on ‘other infectious disease’ Surrey PCT has relatively low YLL but is a relatively high spender to achieve that in comparison to Cambridgeshire PCT which spends less for similar patient outcomes. Surrey PCT Cambridgeshire PCT 49 Comparing years of life lost (YLL) due to mortality from TB by deprivation levels In general, tuberculosis and its complications are associated with deprivation – as demonstrated in the graphs below. Surrey PCT and Berkshire West PCT have similarly low levels of deprivation. Despite this similarity, in comparison to Berkshire West, Surrey has relatively worse patient outcomes with slightly higher YLL to TB deaths. Surrey PCT 15.2 Berkshire West PCT Comparison with services in other areas 15.2.1 Berkshire West Berkshire West PCT currently have no reported PCT TB lead and have not completed a recent TB health needs assessment or service review. TB service provision is largely driven from the acute trust, Royal Berkshire Hospital, which serves much of West Berkshire’s population. There are 2 TB Specialist Nurses (both Band 7) who provide 30hours and 37.5hours per week. Although employed by Royal Berkshire Hospital Acute Trust, they see patients both from Royal Berkshire Hospital and from a wider geographical catchment area (where patients have a choice of acute trust for follow-up). The TB nurses work fairly autonomously. They run their own clinics and lists, can order diagnostics (such as chest xrays and T-spot blood tests), can review the hospital pathology results system and are able to prescribe using patient group directives (PGDs). (The TB nurses are also being encouraged to complete their nurse prescribing course for more autonomous prescribing.) There is a close working relationship with the Royal Berkshire Hospital chest physicians and hospital physicians of other specialties. West Berkshire GPs are less familiar with the referral 50 system but will often call the TB nurses for advice. In general, patients are seen within a few days of referral. Berkshire West PCT have a designated New Entrant nurse (who works at a nurse-run clinic providing primary care for typically ‘hard-to-reach groups eg homeless). The TB nurses work closely with the New Entrant nurse to provide specialist TB advice and expertise. The TB nurses provide domiciliary visits if they are required and currently provide most of the BCG immunisation however, other healthcare professionals eg midwives and school nurses, are being trained up at present to provide BCG. In summary, the Berkshire West TB nurses thought that their service worked well for 3 main reasons: 1. Close working relationship with Chest Physicians 2. Flexibility to manage patients who may have difficulties in adhering to strict clinic times 3. The TB nurses were employed by the acute trust which facilitates the use of diagnostic tests and a closer working relationship 15.2.2 West Sussex There was no reported specific PCT TB lead however, the PCT employs two (Band 7) TB nurse specialists and a TB administrator who are based at Crawley and Horsham Hospital. The 2 nurse specialists work 22.5hours and 37.5hours per week respectively. Between them, they cover the wide geographical area of West Sussex however, this does not include either Worthing or Brighton which both have their own TB nurse specialists. Home visits are available as a ‘last resort’ and instead, patients are encouraged to attend one of the three clinics (Crawley and Horsham Hospital, Haywards Heath and Chichester) available across the county. 15.2.3 Cambridgeshire There are 2 TB nurse specialists (both Band 7) who are employed by Addenbrookes Hospital Acute Trust. They work 22hours and 17.5hours per week respectively. A 3rd TB nurse specialist (Band 7) employed by Cambridgeshire PCT, works from Hinchingbrook District Hospital for 15hours per week. There is a formal service level agreement between the hospital and the PCT for this arrangement. The specialist nurses are able to order diagnostic tests, review results and run clinics but do not currently prescribe TB medication however, there is a PGD for BCG immunisation. There is a close working relationship between the TB nurse specialists and chest physicians. There is no allocated administrative support at either site however any clinic letters are typed up by the chest physicians’ secretarial support. Due to the wide geographical area, home visits are discouraged but DNA rates (despite use of Choose and Book for appointments) are approximately 30-50% on both sites. The Cambridgeshire TB nurses recommended the following: Awareness of TB is raised amongst GPs Close working between chest physicians and TB nurses Recommendations 1. Review the model for TB nurse provision within Surrey. 2. TB nurse specialists should be a Band 7 to ensure both recruitment and retention. 3. Review the scope of autonomy available for the TB nurse specialists at each hospital eg Use of diagnostic tests, access to test results, prescribing etc. 4. TB nurses and chest physicians should work together to ensure a close working relationship to optimise patient care. 51 15.3 Key elements of a comprehensive TB service In line with the recommendations from the DH’s TB Commissioning Toolkit, commissioning TB services needs to go beyond simply the treatment of active TB cases, as referenced by the full NICE guidelines and the TB action plan. A comprehensive TB service addresses: • • • • • • • • • • • • • • • • • • • • • • • • • • • • • rapid access to specialist services if GPs suspect TB; prompt identification of non-TB patients; TB diagnostic services in hospitals (as opposed to primary care); case management of TB patients; ward visits to TB patients; tuberculin skin testing for ward patients; contact tracing of individuals exposed to TB; inpatient beds for TB patients requiring hospitalisation; negative pressure facilities; quality-assured and timely TB microbiology services; inpatient infection control services; provision and management of long-term isolation facilities; standardised outcome real-time monitoring; performance monitoring; advisory work/expert opinion/advice; staff training; multidisciplinary TB clinics;• occupational health assessment of TB risk among healthcare workers; community infection control services; community home visiting; managed access to social care and support; hospital and community TB clinics responsive to patient need;• outreach work; directly observed therapy (DOT); new entrant services; locally targeted health promotion and awareness raising; protection of public health; reactive outbreak case detection/monitoring; coherent service provision with the prison and custody sector; reference laboratories; and surveillance. 15.4 PCT commissioning responsibility According to the DH’s TB Commissioning Toolkit, Surrey PCT is responsible for planning, finance and information management and ensuring a care pathway focus for TB services as detailed below: Planning Carry out needs assessment Set up and operate governance arrangements Local forward planning Ensure that choice operates at an appropriate level Partnership planning with local authority and other stakeholders Maintain links with advisory bodies (eg Expert Patient Forum, TB Network) 52 Liaise and co-operate with health protection unit Finance and information management Set practice budgets Ensure financial stability Manage claims and disputes Care pathway focus Ensure that local care pathways meet the needs of patients Support Expert Patient schemes Survey patient satisfaction Ensure that the majority of complaints are managed at local level In addition, as part of its over-arching responsibility, as discussed in Section 6.2, Surrey PCT needs to make more explicit the boundaries of the different relationships with key stakeholders so that there is greater clarity over duties and responsibilities for our shared patients. The PCT has a duty to commission appropriate services and where services are not covered by the Payment by Results ‘Tariff’, there should be a service level agreement (SLA) in place to specify the detail. 53 16. Summary of recommendations by suggested lead organisation The table below summarises the recommendations, collated from each section of the document but ordered according to the organisation considered best placed to lead the implementation of the recommendation. Section in Needs Assessment Owner / lead organisation 14.3 15.1.3 4.5 All All All 10 14.3 All All Consider whether there are alternative means of streamlining the patient pathway, for example by establishing clinics that integrate multiple aspects of the TB service eg screening and ‘routine‘ outpatient care. 8.3 All Agree a Paediatric patient pathway to facilitate high quality care for children in Surrey. (This should take into account the particularly low incidence of TB in Surrey children but allow for those affected to still receive high quality care.) 15.1.3 All 10.7 All 13.5 All 13.5 All 13.5 All 13.5 All 8.1 Acute 4.5 Acute 5.5 Acute 8.4 Acute TB Health Needs Assessment - Summary of recommendations Recommendations for all stakeholders - TB Clinical Network Clarify responsibility with key stakeholders for different components of TB service eg Management of contact tracing, screening (active case finding), BCG immunisation etc. Review the model for TB nurse provision within Surrey. There should be active case seeking in groups known to be at higher risk of TB. Consider developing Surrey TB service to provide active case finding for TB through outreach to higher risk groups. Agree patient pathway with stakeholders in line with best evidence. Healthcare professionals working with people with TB should reinforce and update education about TB, and referral pathways, to primary care colleagues, social workers and voluntary workers who work with homeless people. Ensure that staff who work with TB Service users are aware of some of the potential cultural differences and are able to be sensitive to them. Ensure that staff who work with TB Service users are able to provide information about how they can access NHS health care or signpost to other resources eg Patient Advisory Liaison Service (PALS) and /or the Department of Health leaflet introducing NHS services. (Check at: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/DH_4123594 website not available at the time of writing) Ensure there is information available for patients about state help with costs such as travel, prescription charges etc and that service users are alerted to the possible options available to them. Ensure access to information about TB suitable for the specific user eg childcentred, appropriate language etc. (The charity, TB Alert, charges a small fee to PCTs for use of their well-written information leaflets.) Recommendations for Acute Trusts Surveillance Acute Trust physicians should complete outcome monitoring as part of their contribution to routine surveillance. Using the enhanced TB surveillance (ETBS) process, improve formal notification of people with TB who are ‘known’ to TB services. Acute Trusts must ensure compliance with statutory reporting of both suspected and confirmed TB cases as part of the legal requirement of clinicians. Ensure that all cases of TB are notified formally to SSHPU in order to trigger the Community TB nurse service. 54 Recommendations for Acute Trusts continued Clinical The DH Commissioning Toolkit recommends that where Paediatric Units have a caseload of fewer than 10 new cases of active TB per year, they are recommended not to treat a TB case without liaison with their adult TB colleagues and similarly, that adult TB clinicians are recommended not to treat childhood TB without involvement of the paediatric services. 4.3 Acute Ensure that parents and guardians of children – and the children themselves – understand the importance of adherence with TB treatment and have sufficient appropriate information to inform their decisions. 8.5 Acute and SCH (TB) 8.7 Acute 8.7 Acute 10.8 Acute 8.7 Acute Health care professionals providing TB or HIV/AIDS services should routinely coordinate screening tests for the other infection (ie HIV or TB respectively) for their patients, especially if other risk factors are present. This may involve referral to the other service or with sufficient appropriate training, the screening may be provided within the original service. Eg A patient with TB should routinely be offered HIV testing. HIV testing may occur after referral to the HIV/AIDS service or from a TB physician or nurse who has undergone sufficient and appropriate training to deliver the pre- and post-test counselling required. Acute trusts should review their Maternity Unit policy regarding neonatal BCG immunisation for babies at higher risk of TB Audit Acute Trusts should conduct regular audit of the management of their patients with TB in order to ensure compliance with current NICE guidance. Use the TB Commissioning Toolkit standards to audit performance of TB services. 10.8 Acute and SCH (TB) 12 Acute 8.1 Acute 5.5 Acute Acute Trusts should audit TB laboratory standards (with reference to the standards detailed in DH TB Commissioning Toolkit) to establish a baseline and to be able to quantify any future progress made. Acute Trust administration 7.4 Acute Ensure that those administering the allocation of appointments for patients with suspected TB are aware of the 2 week guidance. (GPs may wish to consider annotating referral letters with a notice highlighting the urgency as is done with the management of cancer where the ‘2 week rule’ is flagged routinely.) The role of TB Nurses within Acute Trusts TB Nurses and Chest Physicians should work together to ensure a close working relationship to optimise patient care. 8.3 Acute 15.1.3 Acute & SCH (TB) The options for organising care for people with MDR TB should be discussed with clinicians who specialise in this. While the views of the patient should be sought and taken into account, and shared care should be considered, in Surrey, this is very likely to require a tertiary referral. (NICE) Response to treatment should be closely monitored in patients at increased risk of drug resistance. If there is no clinical improvement, or if cultures remain positive after the 4th month of treatment (‘treatment failure’), drug resistance should be suspected and treatment reviewed with a clinician experienced in the treatment of MDR TB. ( NICE) Interferon tests should be used to screen for TB in someone known or suspected as having HIV/AIDS (rather than relying on Mantoux tests). TB Physicians should consider the risk assessment for drug resistance and, if the risk is regarded as significant, urgent molecular tests for rifampicin resistance should be performed on smear-positive material or on positive cultures when they become available. (NICE) Consider the introduction of a Patient Group Directive for Community TB nurses to minimise disruption of a patient’s adherence to treatment in the event of medication issues in between outpatient appointments. Review the scope of autonomy available for the TB nurse specialists at each hospital eg Use of diagnostic tests, access to test results, prescribing etc. 55 8.6 15.1.3 Acute and SCH (TB) Acute and SCH (TB) Recommendations for HPU Agree Surrey protocol for managing TB incidents in Surrey and alert key stakeholders. Increase use of the TB surveillance system to monitor TB incidence and help target interventions in higher-risk groups eg BME groups, new entrants, prisoners and homeless people. SSHPU and clinicians should work together to increase understanding of the ETBS system which is the main method for clinicians to notify TB cases to the SSHPU. Ensure an effective IT system is in place that allows outbreaks, especially cases and contacts, to be correctly recorded. Surrey PCT, Surrey and Sussex Health Protection Unit and the Port Health at Heathrow and Gatwick airports should work together to improve the new entrant referral process including for example: GP registration, Referral to a Health Visitor for Under 5’s 11 HPU HPU 5.5 HPU Acute 11 HPU& SCH 10.4 HPU & PCT Surrey PCT/SSHPU need to liaise with the relevant employers/regulatory authorities to confirm the occupational health BCG provision for higher risk facilities eg schools, nurseries, prisons etc. 11 and HPU & PCT PCT PCT working with Primary Care Ensure that GPs and other primary and community care staff are aware of the symptoms and signs of TB, local TB services and local arrangements for referring patients with suspected TB. The PCT should consider linkage with GP Tutors to incorporate TB as part of core GP continuing professional development (CPD) on health protection. Surrey PCT should work with Surrey GPs to facilitate prompt GP registration for new entrants. Surrey PCT should inform all GP surgeries of the guidance relating to entitlement to NHS services for asylum seekers, refugees and other categories of new entrants to the UK. It is important that the message about the universal free access to anti-tuberculosis treatment is understood. Raise awareness of TB amongst both primary care health care professionals and communities, specifically targeting awareness in the higher incidence areas and those areas where incidence is expected to be higher than is currently experienced. Ensure raised awareness of both public and health care professionals for the possibility of TB in children, especially amongst communities at greater risk of TB. Increase awareness and availability of BCG clinics eg Via Health Visitors, Practice nurses and via primary schools in targeted areas. PCT Prison Health Healthcare workers providing care for prisoners and remand centre detainees should be aware of the signs and symptoms of active TB. TB services should ensure that awareness of these signs and symptoms is also promoted among prisoners and prison staff. Prisoners should be screened for TB by: a) a health questionnaire on each entry to the prison system then b) for those with signs and symptoms of active TB, a chest X-ray, and three sputum samples taken in 24 hours for TB microscopy, including a morning sputum sample. All prisoners receiving treatment for active or latent TB should receive directly observed treatment (DOT). Prison medical services should have liaison and handover arrangements to ensure continuity of care before any prisoner on TB treatment is transferred between prisons. 56 8.2 PCT 8.2 PCT 10.4 PCT 10.5 PCT 13.5 PCT & HPU 8.5 PCT & HPU 10.3 PCT & SCH 10.6 PCT 10.6 PCT 10.6 PCT 10.6 PCT Prisons and PCT recommendations continued PCT Prison Health continued If a prisoner is being treated for active or latent TB, the prison medical services should draw up as early as possible a contingency plan for early discharge, which could happen directly from a court appearance. This plan should include firm arrangements for clinical follow-up and treatment monitoring in the intended district of residence, and should take into account that there may not be a fixed residence arranged for the prisoner after release. The prisoner should be given contact details for a named key worker, who will visit and monitor the prisoner after release and liaise between services involved. Prison service staff and others who have regular contact with prisoners (for example, probation officers and education and social workers) should have preand on-employment screening at the same level as for healthcare workers with patient contact. PCT Contracts The PCT (Commissioning), PCT (Provider) and Acute Trusts should agree a local service agreement which includes screening and associated cost of investigations such as gamma interferon tests. PCT Prisons and 10.6 HPU Prisons and 10.6 7.4 PCT Surrey PCT should work with the Acute Trusts and TB Nurses to ensure that as part of the service level agreement for TB service provision, all patients should have a named case worker and know how to contact them for advice. Surrey PCT should commission Surrey Community Health to ensure adequate and appropriate provision of TB Nurse specialists in line with current guidance (both quantity of FTE staff and appropriate banding). Surrey PCT should clarify the role of Central Surrey Health in TB, especially in TB incident management. New Entrant health screening: Surrey PCT should consider a locally enhanced service (LES) agreement with GPs to provide holistic health screening targeted at specific needs of new entrants based on the recommendations of a New Entrant Health Needs Assessment. Establish local service level agreements between PCT and Acute Trusts to ensure appropriate funding of the different elements of TB care including both Tariff and Non-tariff services. Consider the establishment of an ‘Outbreak contingency fund’ which could provide insurance over and above a pre-agreed level of annual outbreak management. Plan for ‘surge capacity’ to better manage outbreaks / incidents especially regarding the funding of extra resources eg gamma interferon testing. (A possible solution is establishing a contingency fund above and beyond an agreed ‘normal’ expected annual workload – based on previous years’ outbreak experience.) PCT Needs Assessments & Policy Surrey PCT should consider completing a BME Health Needs Assessment. Increase (and maintain) awareness of TB, including through the media and community groups, and develop initiatives to support local awareness-raising among high risk groups. New Entrant Health Care Needs Assessment (HCNA). Surrey PCT should consider completing an HCNA in order to understand the potentially diverse health needs of New Entrants. There is likely to be an increased need for health care related to immunisations and reproductive, mental, nutritional and dental health. Active case finding should be carried out among street homeless people (including those using direct access hostels for the homeless) by chest X-ray screening on an opportunistic and/or symptomatic basis. Simple incentives for attending, such as hot drinks and snacks, should be considered. 57 PCT 9.4 PCT 9.4 PCT 10.4 PCT 14.3 PCT 14.3 PCT 11 PCT 10.3 PCT 10.3 PCT 10.4 PCT 10.7 PCT Surrey PCT’s Immunisation and Vaccination Committee should review provision of BCG immunisation in Surrey to ensure that only those targeted to receive BCG actually receive it. Ensure availability of translation services at all stages of the patient pathway and the availability of information in different languages. 12 PCT 13.5 PCT Considering fully moving the responsibility of BCG vaccination delivery to local immunisation teams / primary care (rather than diverting the scarce TB Nurse resources from TB work that can only be done by a TB-trained nurse). 12 SCH Target schools with high proportions of pupils at higher risk of TB eg BME communities, to raise awareness of the Targeted BCG programme but while remaining sensitive to the risk of stigmatising individuals and communities. 12 PCT SCH 12 PCT and SCH 9.4 11 SCH SCH Surrey Community Health Immunisations Encourage working between the Immunisation Team and BME Community Development worker to facilitate culturally-sensitive targeted health promotion materials on BCG (and other relevant health subjects). TB Nurses Ensure adequate administrative support in order to free TB Community Nurses to expand their clinical work. (This expansion includes tasks such as active case finding in high risk groups and raising awareness of TB in Surrey.) Increase administrative support available for Community TB Nurses. All patients should have a named case worker and know how to contact them for advice. (As this is a capacity issue, please see section 9 on TB nurses.) Review the provision of TB nurses across the county in order to provide high quality TB service for all regardless of geographical location. Surrey Community Health should ensure that TB Community Nurses are suitably clinically supervised to ensure that high quality patient care is maintained as part of good clinical governance. TB nurse specialists should be a Band 7 to ensure both recruitment and retention. 58 8.1 and SCH 8.4 PCT & SCH 9.4 SCH 15.1.3 SCH Acknowledgements Thanks to the following people who provided extensive information about TB Services in Surrey: Dr Kevin Carroll – CCDC, Surrey and Sussex Health Protection Unit Nigel Bainton – Data Manager, Surrey and Sussex Health Protection Unit Deborah Hepburn – TB Clinical Nurse Manager, Surrey Community Health 59 Appendix 1 Summary of NICE guidance for the diagnosis of TB The full NICE guidance: Tuberculosis: Clinical diagnosis and management of tuberculosis, and measures for its prevention and control. 2006. NICE. Available at: http://www.nice.org.uk/nicemedia/pdf/CG033niceguideline.pdf NICE guidance sets out the following advice when diagnosing active TB: Respiratory TB: o CXR and if this suggests TB, arrange further tests. o Send at least 3 spontaneous sputum samples for culture and microscopy (including one early morning sample). o If spontaneous sputum samples are not possible then consider bronchoscopy and lavage or, in children, gastric washings. o Take samples before starting treatment or within 7 days of starting. o Start treatment without culture results if there are clinical signs and symptoms of TB and complete treatment even if the culture results are negative. o Send autopsy samples for culture if respiratory TB suspected. Non-respiratory TB: o Discuss the advantages and disadvantages of biopsy and needle aspiration with the patient. o Send samples in a dry pot for TB culture. These may be lymph node biopsies, aspirated pus or any other samples. o Start drug treatment, if the histology and clinical picture are consistent with TB, before culture results are available. o Continue treatment even if culture results are negative. o CXR should be done for coexisting respiratory TB in all patients with nonrespiratory TB. Other investigations should also be considered. Laboratory tests: o Only perform rapid diagnostic tests on primary specimens when: Rapid confirmation of Tb would alter care of the patient. Before conducting large contact-tracing initiatives. o If clinical signs and test results suggest TB meningitis, start treatment even when rapid test results are negative. o If risk assessment suggests MDR TB then: Do rapid diagnostic tests for rifampicin resistance. Start infection control measures and treat the MDR TB whilst awaiting test results 60 Appendix 2 Laboratory services in Surrey - 2008 ASPH ESH FPH-RSCH SASH Do you provide a diagnostic TB Service? Yes Yes Yes Yes How many TB microscopies did you perform in 2008? How many were positive? 1521 707 3150 1357 45 (3.0%) 14 (2.0%) 34 (1.1%) 68 (5.0%) How many times a week do you usually do TB microscopy? Do you provide a TB microscopy on call service? Daily Mon - Fri Daily Mon - Fri Daily Mon - Fri Yes Yes Yes Daily Mon Fri Yes Do you provide TB microscopy at weekends? Yes – on request Yes – on request Yes – on request Yes – on request How many specimens did you culture for mycobacteria in 2008? How many were positive for MTB? 795 3272 2147 10 (1.3%) 50 (1.5%) 45 (2.1%) How many were positive for Mycobacteria other than TB? What culture method do you use i.e. TBbactec/LJ slopes/liquid media? What percentage were contaminated? 27 (3.4%) 60 (1.8%) 25 (1.2%) TB bacTalert + LJ slope TB bacTalert 4.7% 4% Culture Liquid - MGIT Liquid culture + LJ slope Idenfication and sensitivity testing Do you do this in house? If not, who do you send to for ID and sensitivity? No London Myco Ref Laba No No No The Brompton 37 110 London Myco Ref Laba 55 No No No No London Myco Ref Laba London Myco Ref Laba The Brompton 8 72 London Myco Ref Laba 20 7 55 No Not currently but Immunology Dept would like to start service No No Quantiferon – The Londona Tspot - Oxfordb Oxfordb Quantiferon – St Barts Tspot - Oxfordb 610 Chelsea & Westminster 30 How many isolates in 2008 did you do or send away for ID and sensitivity testing? London Myco Ref Lab a Newer testing methods Do you perform rapid PCR based detection test in house? If not who do you send PCR based tests to? How many PCR based tests did you do/send away in 2008? How many of these were positive? Do you perform any interferon-gamma based (IFNy) test in house? (76.4%) If so which one Do you send away blood for (IFN-y) testing and if so where and which test How many interferon based assays did you perform/send away in 2008? 5 (Does not include Occ Health samples sent directly) Service development ideas How do you feel the TB services should be provided in Surrey? If a centralised service was to be developed on 1-2 sites would you want it to provide an extended range of tests such as PCR and interferon-gamma based assays? Do you think any TB investigations would need to remain on site and if so what? Consider centralising Central culture and possibly PCR. Not gamma-interferon tests. Microscopy – unless transport improves Adapted from Hampshire PCT TB Review 2006 a b – Mycobacterium Reference Laboratory, The London Hospital - Oxford Immunotec Resource adequately and maintain on current sites No benefit since MRU provides a good service. Consider centralising Yes Current service provides rapid results and maintains skills. TB work is part of the investigation carried out for many routine samples and should not be divorced from the routine work. Possibly microscopy unless good transport. Consider centralising Yes but will depend on numbers to be viable. Microscopy & liquid / slope culture Appendix 3 Analyses of New Entrants to Surrey during the period 01/01/07 to 30/09/08 Dr Kevin Carroll, CCDC, Surrey and Sussex Health Protection Unit Background Nationally and also in Surrey most cases of Tuberculosis (TB) are diagnosed in individuals who were born in countries where the incidence of Tuberculosis is high. The rate of TB is also higher in individuals born in this country but whose families originate from these countries (see Table 1). This observation has determined the UK policy of screening for TB at the Port of entry. Table 1 Currently a new entrant proposing to stay in the UK for 6 months or longer and who originates from a country where the rate of TB (WHO rates) is >40 per 100,000 is identified by immigration officers and usually screened for TB by a single Chest X-ray. Occasionally new entrants presenting a recent CXR or entering under special programmes, or who are pregnant or children are exempt from this requirement. The Surrey Office of the HPU on behalf of Surrey PCT receives information about these New Entrants from the Port Health Medical Units. For all new entrants notified to the HPU a letter is sent to the new entrant at the address given on the Port Health form. The letter informs them about the procedure to register with a GP practice and encloses a return slip to inform the HPU of the GP details when registered. Individuals who were not screened by CXR at the Port of Entry are sent a CXR form for their local hospital and the report is returned to the HPU (with the exception of East Surrey Hospital). The HPU informs the patient or (GP if already known) of the result by letter. If the screening reveals abnormalities on the CXR the individual is referred by the HPU to the TB nursing service or directly to the nearest chest clinic for further assessment. Figure 1 The screening of new entrants is currently under review nationally. NICE has recommended that new entrant screening should be carried out as described in algorithm opposite (see Figure 1). The chest X-ray is still recommended as the first step, however for certain categories further screening using the Mantoux skin test and Interferon gamma test are recommended. The intention is to identify those who have latent TB and who are therefore most likely to benefit from chemoprophylaxis to prevent progression of latent infection to active disease. National data and also that from the Surrey Enhanced TB Surveillance database (see Figure 2) confirms that most new entrants who develop TB do so within 10 years of first entering the UK. The majority of new entrants to Surrey from high incidence countries are under the age of 36 yrs (83% of new entrants, see Figure 3). Figure 2 Figure 3 New entrants to Surrey under 36 yrs of age during the period 01/01/07 to 30/09/08 from Countries with rates of TB >40 per 100000 Group Number % All new entrants under 36 yrs of age from countries with T rates > 40 per 100000 All new entrants under 36 yrs of age and from countries with TB rates > 150 per 100000 All new entrants under 36 yrs of age and from countries with TB rates > 200 per 100000 All new entrants from countries with T rates > 40 per 100000 3310 82.7 2270 56.7 1001 25.0 4004 100 New entrants to Surrey with Chest X-ray performed or accepted at the Port of Entry during the period 01/01/07 to 30/09/08 from Countries with rates of TB >40 per 100000 Group Number % Aged 11 to 36 yrs of age and from countries with TB rates > 40 per 100000 Aged 11 to 36 yrs of age and from countries with TB rates > 150 per 100000 Aged 11 to 36 yrs of age and from countries with TB rates > 200 per 100000 Aged >10 yrs of age and from countries with TB rates > 40 per 100000 All new entrants from countries with TB rates > 40 per 100000 2330 69.3 1621 48.2 673 20.0 2877 85.5 3364 100 New entrants to Surrey who did not have a Chest X-ray performed at the Port of Entry during the period 01/01/07 to 30/09/08 from Countries with rates of TB >40 per 100000 Group Aged 11 to 36 yrs of age and from countries with TB rates > 40 per 100,000 Aged 11 to 36 yrs of age and from countries with TB rates > 150 per 100,000 Aged 11 to 36 yrs of age and from countries with TB rates > 200 per 100,000 Aged >10 yrs and from countries with TB rates > 200 per 100,000 New entrants from countries with TB rates > 40 per 100,000 who did not have CXR done at Port of Entry 468 148 (30.8) Registered with GP (informed HPU) 120 (24.9) 296 95 (32.1) 74 (25.0) 177 56 (31.6) 41 (23.2) 628 208 (33.2) 169 (26.7) 635 211 (33.2) 169 (26.7) Number CXR done (%) New Entrants By Country of Origin and Incidence Rate of TB (if > 100 per 100000) (N=3008) Country Swaziland South Africa Namibia Zimbabwe Zambia Botswana Cambodia Rwanda DR Congo Togo Kenya Ethiopia Malawi Uganda Tanzania, UR Nigeria Chad Haiti Philippines Angola Senegal Gambia Sudan Indonesia Bangladesh Tajikistan Ghana Bolivia Cameroon Pakistan Nepal Niger Viet Nam Myanmar India Peru Afghanistan Lao PDR Thailand Moldova, Republic of Solomon Islands Kazakhstan Ecuador Uzbekistan Russian Federation Ukraine Malaysia Total TB rate per 100000 pop 1155 940 767 557 553 551 500 397 392 389 384 378 377 355 312 311 299 299 287 285 270 257 242 234 225 204 203 198 192 181 176 174 173 171 168 162 161 152 142 141 135 130 128 121 107 106 103 Number 1 661 6 39 10 4 2 2 2 1 18 8 7 10 1 157 1 1 249 1 1 4 3 13 53 1 16 2 3 194 212 1 21 8 1026 8 12 1 90 3 1 4 5 1 89 16 118 3088 % 0 16.5 0.1 1 0.2 0.1 0.1 0.1 0.1 0 0.4 0.2 0.2 0.2 0 3.9 0 0 6.2 0 0 0.1 0.1 0.3 1.3 0 0.4 0.1 0.1 4.8 5.3 0 0.5 0.2 25.6 0.2 0.3 0 2.2 0.1 0 0.1 0.1 0 2.2 0.4 2.9 Cumulative % 0 16.5 16.7 17.7 17.9 18 18.1 18.1 18.2 18.2 18.6 18.8 19 19.3 19.3 23.2 23.2 23.3 29.5 29.5 29.5 29.6 29.7 30 31.3 31.4 31.8 31.8 31.9 36.7 42 42.1 42.6 42.8 68.4 68.6 68.9 69 71.2 71.3 71.3 71.4 71.5 71.6 73.8 74.2 77.1 77.1 Discussion During the 18 months of this study there were 4004 new entrants to Surrey from countries with an incidence of TB >40 per 100000 (approximately 2500 new entrants to Surrey annually) 89% of these were successfully screened by CXR at Port of entry or after they had arrived in Surrey. Of these migrants 83% were < 36 yrs of age. If screened according to the NICE guidance they would be considered for chemoprophylaxis if there was evidence of latent disease ie positive Mantoux and interferon gamma test results. The performance of the screening programme is unknown, although overall about 33% of migrants who are sent CXR forms after arriving in Surrey present for radiography and about 27% inform the HPU that they have registered with a GP. Of the 4004 new entrants who were screened at the Port of Entry or referred by the HPU for screening by chest X-ray, 62 individuals were subsequently referred for further investigations of abnormal chest X-ray findings. The outcome of the referrals is unknown but far as is known there have been no new active cases of TB detected by the current system of CXR at Port of Entry or shortly after entry, but one individual is known to have been commenced on chemoprophylaxis. The TB specialist nursing service in Surrey now informs the HPU of new entrant referrals who do not subsequently present for assessment. There is currently considerable debate concerning the most cost effective model for new entrant screening. There appears to be a consensus that the model of a one off CXR currently used is no longer appropriate because most cases of TB in new entrants are not identified on arrival, but develop after arrival and within 10 yrs of entering the UK. A review of the effectiveness of the current national system is currently underway. With the development of the interferon gamma tests and the NICE guidance there is the opportunity to screen for latent disease in the < 36 yr olds (the age group from epidemiological studies most likely to progress to active disease) and to offer them chemoprophylaxis. However this has considerable resource implications particularly with respect to the supervision of the treatment by already over stretched TB services. At least one PCT in England has adopted a targeted screening strategy in which all new entrants from countries with an incidence of > 200 per 100,000 are offered screening using a gamma interferon test only and if found to be positive are assessed for active disease and offered chemoprophylaxis as appropriate, for age and other risk factors eg HIV status. If this approach were to be adopted in Surrey about 800 new entrants of all ages would be eligible annually. If it were targeted to those under 36 yrs of age, about 640 individuals would be eligible for screening annually. There is no national policy statement as to the preferred model for such a screening strategy, but NICE does suggest that TB screening as well as screening for other infectious diseases eg HIV, hepatitis B and C and immunisation status could be offered in primary care and form part of the new patient registration process. The challenge would then be to encourage new entrants to register with a GP. Appendix 4 Standards for surveillance Taken from: Tuberculosis prevention and treatment: a toolkit for planning, commissioning and delivering high-quality services in England. DH 2006. pp 37 – 39. Available at: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH _075621 Reporting new cases by clinical teams/local TB services (case definitions are given on page 39 of the DH TB Toolkit) All cases should be reported by the clinical team to the local health protection unit. At least 95% of cases should be reported within two weeks of diagnosis or decision to treat with a full course of anti-TB drugs. At least 95% of reported cases should include complete data for the key variables (see appendix on page 40 for the key variables). At least 95% of all originally notified cases of TB that are subsequently denotified, should be reported within two weeks of the date of the non-TB diagnosis. Collection and forwarding of information on reported cases by HPA Local and Regional Services All cases reported by clinical teams/local TB services to HPA Local and Regional Services (LaRS) should be forwarded to HPA Centre for Infections (CfI) within three months of the date of diagnosis or decision to treat. Treatment outcome (see appendix on page 39 for categories) Outcome of treatment should be reported on at least 95% of all cases reported as incident cases by the clinical team to the local health protection unit within three months of the oneyear anniversary of the date of diagnosis or start of treatment. The outcome of treatment in all cases reported by clinical teams should be forwarded by HPA LaRS to HPA CfI within four months of the one-year anniversary of the date of diagnosis or start of treatment. Microbiology results Mycobacteriology reference laboratories should report the results of species identity and drug susceptibility on all isolates, within one working day of the result being available, to the source primary diagnostic laboratory. Mycobacteriology reference laboratories should, simultaneously, report the results of species identity and drug susceptibility on all isolates, within one working day of the result being available, to MycobNet. The primary diagnostic laboratory should report the results of all new sputum smears positive for mycobacteria to the clinical team and local health protection unit (according to local arrangements) within one working day of the results being available. The primary diagnostic laboratory should report the results of all new positive mycobacterial cultures (identified as MTBC complex by the reference laboratory) to the clinical team and local health protection unit (according to local arrangements) within one working day of the results being available. Molecular strain typing The mycobacteriology reference laboratories should report the results of molecular strain typing on all isolates, within one week of the result being available, to the national strain typing database (as well as the source primary diagnostic laboratory). Feedback and reports HPA local, regional and national surveillance units/centres have a responsibility to produce timely reports to be distributed locally to inform appropriate action. Surveillance data collected within a given calendar year must be reported back within the subsequent year. Quarterly reports using provisional data should be produced within six months of the quarter in which a case is reported. Annual reports of finalised data should be available before the end of the following calendar year. Information should be provided by the HPA to commissioners, acute trusts, PCTs and the Department of Health to support commissioning and planning of TB services in a timely manner. Audit trail All health protection units and the national surveillance centre should be able to show that they are achieving the standards outlined in this document for all cases reported within the geographical areas for which they are responsible. NHS trusts and SHAs should monitor compliance with the standards outlined through local TB networks in collaboration with the HPA. Appendix 5 Standards and criteria for effective laboratory diagnosis of (active) Mycobacterium tuberculosis infection Taken from: Tuberculosis prevention and treatment: a toolkit for planning, commissioning and delivering high-quality services in England. DH 2006. pp 30 – 36. Available at: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH _075621 This section is intended for microbiologists and histopathologists working to diagnose active TB via the use of appropriate laboratory tests. PCTs might find this section useful for background reference when considering appointing laboratory providers as part of effective local TB commissioning. Introduction This section of the toolkit recommends methodologies and criteria to ensure the rapid, accurate diagnosis of active TB. With the needs and expectations of patients and their clinicians in mind, it also addresses: • supporting the early confirmation of appropriate treatment; • instigating suitable measures to reduce transmission; and • providing timely evidence to help identify and investigate possible outbreaks. Many microbiology laboratories only perform certain investigations because confirmation of identity, antimicrobial susceptibility testing and molecular typing can only be done at a few specialist centres. However, best practice requires all laboratories to meet the appropriate criteria for the procedure(s) they undertake. Time guidelines are indicated on the basis of microbiology services being provided six days each week, with local arrangements for public holidays to minimise delays. The criteria discussed in this section are designed to complement the information and recommendations published in other national guidance documents. It is recommended that they are read in conjunction with the guidelines on tuberculosis issued in March 2006 by NICE and the National Standard Method (Bacteriology Standard Operating Procedure (BSOP) 40) for the microbiological investigation of specimens of Mycobacterium species issued by the Standards and Evaluations Unit of the HPA. See links listed below. NICE guidelines on tuberculosis http://guidance.nice.org.uk/CG33/quickrefguide/pdf/English http://guidance.nice.org.uk/CG33/guidance/pdf/English www.nice.org.uk The National Standard Method (BSOP 40) www.hpa-standardmethods.org.uk/documents/bsop/pdf/bsop40.pdf www.evaluations-standards.org.uk Types of sample Laboratories undertaking mycobacterial work should be prepared for the examination of a wide variety of specimen types, including: • sputum or other respiratory samples; • cerebrospinal fluid, spinal/paraspinal/intracerebral material; • gastric washings; • lymph node or other tissue samples or tissue fluids; • • • blood or bone marrow (taken into mycobacterial culture medium); bone; and urine. Number of samples For sputum, three fresh, purulent samples (ideally 5ml or greater) from the lower respiratory tract should be collected at intervals of 8–24 hours, including at least one early morning sample. Most other specimen types will be single samples except for gastric washings and urine. For patients with sputum initially positive for M. tuberculosis complex (MTBC), repeat sputum specimens (if available) should be sent monthly until at least one is reported as culture-negative for MTBC. Documentation Full personal identification and clinical details are provided with the samples. This is required to comply with local specimen labelling policies and minimum data set requirements in accordance with trust policy and Clinical Pathology Accreditation standards. Transfer to the laboratory Ideally, specimens need to be received in the laboratory within one working day (48 hours maximum) of collection. This is necessary to prevent increased overgrowth by commensal flora and the possible deterioration of mycobacterial cell walls, which may not impact on viability but can lead to the failure to retain stain and risk a false negative smear test. For the same reason, laboratories that do not perform any mycobacteriological investigations on site are required to transfer specimens to their processing laboratory within one working day. For information on the transport of potentially infected clinical samples, see ‘Transport of samples and cultures’ on page 33 of the DH TB Commissioning Toolkit. Initial investigations Microscopy – auramine fluorescent staining It is recommended that at least a six-day service is provided for smear examination on appropriate samples during the normal working day. Out-of-hours smear testing for M. tuberculosis may compromise quality guidelines. Risk assessment of the patient with suspected TB needs to assume the patient is infectious. For optimum clinical and public health management, microscopy should be performed and the result issued within one working day of receipt of the specimen by the processing laboratory. Any new positive results need to be telephoned through as soon as possible to a member of the clinical team responsible for the patient’s care. It is also recommended that the lead TB nurse, lead clinician for TB and the CCDC are also informed within one working day, in line with locally agreed arrangements to ensure that: the person with confirmed TB is told in a timely fashion by someone with appropriate expertise; and suitable public measures can be instigated. Laboratories accredited for this work will have an internal quality control (IQC) programme in place and show satisfactory performance in an external quality assurance (EQA) proficiency scheme. To achieve this, laboratory staff need to maintain proficiency in interpretation of smears through continuing professional development (CPD) and peer review (for example, by an interpretative quality assurance programme). Molecular tests for MTBC may be used in appropriate circumstances; see ‘Molecular fingerprinting/typing’ on page 34. Culture, isolation and identification To meet internationally accepted criteria, the culture, isolation and identification in 90% of cases need to be completed within 21 days of the source laboratory receiving a specimen. (Although most non-tuberculous species will grow in this time, some are slower, eg M. malmoense, M. xenopi. Definitive identification of some of these species may also be more protracted.) Culture In order to meet the 21-day criteria for speed and sensitivity:* Automated liquid culture needs to be done on all samples being processed for mycobacterial culture (by arrangement with other laboratories if necessary). This is required to be set up within one working day of receipt of the specimen (six-day service). Conventional solid culture also needs to be set up on at least one sample of each suitable specimen type received for mycobacterial investigation (see BSOP 40). This is required for some MTBC isolates and other Mycobacterium species that do not grow well in liquid culture. Positive cultures Acid-fast bacilli isolates (liquid or solid culture) for identification and susceptibility testing go to the appropriate regional centre for mycobacteriology (RCM) within one working day of the culture becoming positive. However, if the mycobacterial growth indicator tube (MGIT), BD culture system is used, consideration may be given (in conjunction with the RCM) to incubating cultures for a further 48 hours before despatch to achieve suitable biomass. To maintain the quality of the sample, and for safety reasons, the culture needs to reach the regional centre within one working day of despatch (for information on transport, see page 33). At least one acid-fast bacilli isolate from each new patient needs to be identified to complex/species level, and suitable susceptibility tests performed if identified as MTBC. Repeat AFB isolates from the same patient need to be identified and susceptibility tests performed if cultured from a specimen taken three months or more after a previously referred MTBC isolate. Identification To facilitate timely initiation of clinical treatment and public health measures: A nucleic acid amplification test (NAAT) or a hybridisation gene probe for MTBC needs to be done within one working day of a culture being shown to be positive or within one working day of receipt of a positive culture by the RCM. As necessary, other hybridisation probes and phenotypic identification tests will be done in the RCM. Reporting Similarly the RCM needs to report receipt of the isolate and initial identification results to the source laboratory within one working day. The source laboratory then needs to inform a member of the clinical team responsible for the patient’s care, and ensure that the lead TB nurse, the lead clinician for TB and the CCDC are informed of new positive culture results and identification results from the RCM. This should also be done within one working day of the results being received, in line with locally agreed arrangements. * Health Technology Assessment 2007, Volume 11 No. 3 concludes: ‘fully automated liquid culture methods were superior to culture on solid media, in terms of their speed and precision’. Laboratory facilities and expertise Safety: all culture work in primary diagnostic laboratories and RCMs needs to be done in a containment level 3 facility which has Health and Safety Executive approval for the purpose; has a contingency plan for containment in the case of accidental dispersal; and has a continuity plan for service support in the event of containment level 3 facility closure. To maintain reliable services of appropriate quality, those commissioning TB diagnostic services are strongly advised to use laboratories accredited for mycobacteriology culture, with an IQC programme in place, and which show satisfactory performance in an EQA proficiency scheme for every level of service provided, ie microscopy, culture, identification and susceptibility testing. In addition, the laboratory needs to maintain sufficient throughput to sustain competence levels. Consultant medical microbiologists/clinical scientists and biomedical scientists in laboratories providing M. tuberculosis culture are required to maintain their expertise and competence in laboratory testing – and also in the provision of advice on diagnosis, management and infection control aspects of TB through an appropriate programme of CPD. Details of laboratory procedures for processing individual specimen types are given in the National Standard Method (BSOP 40), available at: www.hpa-standardmethods.org.uk/documents/bsop/pdf/bsop40.pdf Transport of samples and cultures Patient samples Patient samples need to be transported by a system conforming to the requirements for potentially infected samples (and routine for general bacteriology samples). Positive cultures Under current international transport regulations, these are category A cultures. However, an exemption clause allows them to be transported as category B material for clinical and diagnostic purposes if transported by road or rail. These cultures are assigned to UN 3373 (diagnostic or clinical specimens) and need to bear the marking ‘diagnostic specimens’ or ‘clinical specimens’, and be packed to packing instructions P650. Substances packed and marked in accordance with packing instructions P650 are not subject to any other requirements in the regulations – thus there is no requirement for additional transportation documentation. Such specimens should not be transported via Royal Mail because any mail may be transported by air, which carries additional requirements. Susceptibility testing Results To fulfil internationally accepted criteria, the results of susceptibility tests to primary therapeutic agents are required to be made available within 30 days of the initial receipt in the source laboratory of a clinical sample from which MTBC is isolated for at least 95% of specimens. For each new patient case, the primary agents to be tested are isoniazid, rifampicin, pyrazinamide and ethambutol with test results ideally available within 14 days of receipt of the isolates by the RCM and reported to the source laboratory within one working day. If a new isolate of MTBC is found to be resistant to isoniazid or rifampicin, it is recommended that this information is telephoned by the RCM to the source laboratory. To enable appropriate clinical and public health action, the source laboratory needs to inform a member of the clinical team responsible for the patient’s care within one working day of the results being received, in line with locally agreed arrangements. Similarly, the source laboratory should also inform the lead TB nurse, the lead clinician for TB and the CCDC of the results. Molecular detection Molecular detection of resistance gene markers for rifampicin is useful in identifying possible MDR TB (see NICE guidance – http://guidance.nice.org.uk/CG33). It is recommended that the specimen or isolate should be sent within one working day of the test being agreed between the source laboratory and the RCM or another testing laboratory, and that those results (including the confirmation of the presence of MTBC) are available within three working days of receipt of the specimen or isolate at the testing laboratory. It is recommended that susceptibility testing is done in an RCM with appropriate accreditation, IQC and EQA in place. Resistant isolates If a previously unknown MTBC isolate is shown to be resistant to rifampicin or two other primary agents, further tests need to be performed to guide appropriate treatment. Agents tested would usually include a fluoroquinolone, amikacin, capreomycin, streptomycin, ethionamide, cycloserine, para-amino salicylic acid and a macrolide. Ideally, these ‘second’ or ‘third’ line results are reported to the source laboratory within 30 days of the resistance to the primary agents being identified. The RCMs will provide the facility for testing other (including novel) agents as appropriate. The laboratory requirements are set out in ‘Laboratory facilities and expertise’ on page 33. Molecular fingerprinting/typing Many public health specialists and clinicians agree that, for optimal public health management of TB in the community, all new isolates of MTBC should undergo 15-loci mycobacterial interspersed repetitive units – variable number tandem repeats (MIRU-VNTR) typing and the results entered in the national database within 21 days of receipt of the isolate at the RCM for at least 95% of isolates. Other molecular techniques may be used for particular investigations as appropriate. The most appropriate facilities for these tests are at an RCM, and it is recommended that: the results are reported to the source laboratory within one working day of the test being done; and the source laboratory ensures that that local arrangements are in place to inform the clinical team, the lead TB nurse, the lead clinician for TB and the CCDC of the results within one working day of them being received. Reporting to the HPA surveillance system To enable comprehensive public health surveillance and monitoring, the laboratory that first isolates M. tuberculosis from a sample should report this to the HPA as part of CoSURV reporting to the Communicable Diseases Report (CDR). The RCM will also report to the CDR all positive cases within one working day of confirming the positive results. The RCM will report culture details including susceptibility results to the Mycobacterial Surveillance Network (MycobNet) within one working day of the report being sent to the source laboratory. Direct nucleic acid amplification tests for detection of M. tuberculosis This is not part of the routine investigation of samples for M. tuberculosis but may be considered where there is a high suspicion of infection and a definitive diagnosis of M. tuberculosis is deemed urgent in clinical terms or for health protection purposes (see NICE guidance – http://guidance.nice.org.uk/CG33). This test could be arranged between the requesting clinician and a suitably experienced local medical microbiologist, clinical or biomedical scientist who will liaise with the RCM or other laboratory providing the service. Good practice would be availability of the result within three working days of receipt of the sample by the testing site laboratory. Immunodiagnostic tests Debate continues on the use of interferon-gamma tests and the NICE guidelines contain recommendations on their use. Further information on the microbiological aspects is provided in Annex 5. There is currently no evidence that interferon-gamma tests are cost-effective in diagnosis of active TB but may be useful in diagnosis of latent TB. The HPA is developing further advice on use of interferon-gamma tests in the form of frequently asked questions. They are expected to be published later in 2007. Histopathology of lymph nodes and other tissue samples taken at biopsy or autopsy This summary guidance should be read in conjunction with current histopathology and autopsy guidance. Tissue biopsies It is recommended that: results are reported within three working days (or four, if extended fixation is indicated on safety grounds) of receiving the sample when TB is suspected clinically, or as soon as detected when discovered unexpectedly and the pathologist considers it clinicopathologically urgent; when biopsy samples of tissue clinicoradiologically suspected to be TB are taken, including samples analysed by perioperative frozen section, arrangements are in place for part of it to be sent to microbiology for culture. This may be the clinician’s or the pathologist’s responsibility, according to local protocols; once the clinical team responsible for the patient’s care has been given the diagnosis of TB, locally agreed arrangements ensure that the lead TB nurse, the lead clinician for TB and the CCDC are informed of the results as soon as is feasible; cytopathology laboratories receiving material for diagnosis of M. tuberculosis infection liaise with their microbiology laboratory, as described for biopsy samples (second bullet, above); and histopathology and cytopathology samples of fresh TB tissue are handled according to standard safety conditions until they are fixed and non-infectious (ie in a ventilated cabinet). Autopsy tissues It is recommended that: If M. tuberculosis infection is suspected before or during autopsy: the autopsy is performed according to infection containment protocol; fresh samples of potentially infected tissues should be sent for microbiological investigation; and when a diagnosis of TB is made through autopsy alone, the histopathologist reports the case to the local microbiology laboratory, which can inform the CCDC. General considerations Histopathologically, the diagnosis of TB is a continuum ranging from certain mycobacterial infection (ie acid-fast bacillus positive, in the appropriate cellular context) consistent with TB, to granulomas and/or necrosis, without evident acid-fast bacilli – consistent with TB, but also with other infectious and non-infectious conditions. It is recommended that in reporting suspected TB samples, the pathologist conveys the degree of confidence in such a diagnosis, in order to aid clinical management, including consideration of empirical therapy. This is correlated with available microbiology results. A polymerase chain reaction (PCR) of formalin-fixed, paraffin-embedded material is not reliable for diagnosing infection with M. tuberculosis (ie not sensitive or specific enough), and there are currently no CE-marked commercial kits available. Audit trail To fulfil accreditation requirements, all laboratories involved in the provision of diagnostic services for TB need to be able to show that they fulfil the criteria listed above for timeliness and completeness of reporting and quality assurance in reports for commissioners, SHA performance managers, the Healthcare Commission and Clinical Pathology Accreditation (CPA UK Ltd). Appendix 6 TB Patient Survey Results - Jun 09 Total number – 13 responses Patient information Please mark with X 1) What age are you? Under 18 18 to 40 41 to 64 over 65 9 3 2 Please mark with X 2) Are you? Male Female 3 10 3) Which of the following best describes your ethnic origin? Asian Indian 5 Pakistani 1 Bangladeshi Any other Asian 1 White British 2 Please mark with X Sri Lankan Tamil British Asian Any other white non European Any other white European background Irish Polish Black Black Caribbean Black African 4 Black British Any other Black background Mixed White & Black Caribbean White & Black African White & Asian Any other mixed background Chinese Gypsy Arabic Japanese Any other background Other 4) Which hospital are you being treated at for your tuberculosis? Please mark with X St Peter’s Hospital, Chertsey East Surrey Hospital, Redhill Epsom Hospital, Epsom Frimley Park Hospital, Frimley Timing of treatment 5) When did you start treatment at the hospital? Month 4 1 1 1 Royal Surrey County Hospital, Guildford Other hospital?– please hospital 4 write name of Year 6) If you told a family doctor (GP) or practice nurse about your symptoms, approximately how many weeks did it take before you were sent to the hospital for assessment for tuberculosis? Number of weeks…1 / 28/ 8/ 14/ 13 (5 responses) Average 12.8wk Language 7) Is English your first language (mother tongue)? Yes No Please mark with X 3 10 8) Do you need help to understand the TB doctor or nurse? Yes No 9) If you need help to understand English, who do you ask for that help? Family member Friend Professional translator Other Please mark with X 2 10 Please mark with X 3 Understanding your TB 10) Overall do you feel you understand enough about your TB? Yes Yes but would like to know more No Don't know 11) What things do you already know about TB? How to take my medication How long I need to be treated How I got TB If my TB can spread to other people If my TB affected my job Please mark with X 9 4 Please mark with X 12 11 6 7 5 12) What extra information would you like to know about TB? Comments Had TB while pregnant: What impact TB will have on baby? How long does treatment take? Is there any way of preventing TB? Why does TB keep coming back? Has taken patient but is TB truly gone? 13) Have you received any written information about TB? Yes No Please mark with X 8 5 14) If English is not your first language (mother tongue), have you been offered written information in another language? Yes No Please mark with X 2 6 15) If you are looking after a child with TB, would you like your child to have different information in a way that they can understand? Yes No Please mark with X 2 2 Transport 16) How do you get to the hospital most of the time? Car Bus Train Walk Cycle Other Please mark with X 9 4 2 2 0 0 17) If you had to travel to another hospital in Surrey, would this be difficult for you? Very difficult Quite difficult No problem Comments re Transport As long as TB Clinic is close to public transport Please mark with X 2 3 4 Concerned about changing job and finding time to travel to clinic from new location - Feel fine now so might stop treatment. Insufficient money to pay travel fares Relied on husband to drive so he had to miss work Your overall feeling for the TB services in Surrey 18) Overall do you feel the TB health staff Please mark treat you with respect? with X Yes – they treat me with respect 10 Yes but they could do better 1 No – they don’t treat me with respect Don't know / can't remember Comments Appreciated TB Nurse support and help re medicine to home Felt that St Peter's Clinic were lazy eg Delay to testing family with Mantoux Really appreciated the respect from TB Nurses and bringing medicine home. 19) Overall do you feel satisfied with your TB care? Very satisfied Satisfied Not satisfied It is terrible Don't know / can't remember Comments Please mark with X 5 2 1 1 GP needs more awareness and education Diagnosed by Oncology Team prior to starting treatment Unhappy with GP and slow diagnosis Appreciated the patient survey and chance to give opinion Diagnosis is unclear so not happy with lack of clarity GP was slow to diagnose and limited information available until into 'TB system' - Would like more info at GP level. Felt that while TB nurses were very good, they were overstretched. Grateful to Hospital team and TB nurses but disappointed that GP told her 'We do not have TB in our village' despite GP being told she was a new entrant (from a high-risk country)!