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AngCN-CCG-PSS1 Survivorship Strategy Living with and beyond cancer Anglia Cancer Network Survivorship Strategy Living with and beyond cancer Supportive and Follow-Up Care For approvals and version control see Document Management Record on page 9 AngCN-CCG-PSS1 H:\Cancer Network\Cross Cutting Groups\Survivorship\Documents\active\AngCN-CCG-PSS1_v2 Strategy Living Beyond Cancer.doc Page 1 of 18 Approved and Published: Aug 2012 AngCN-CCG-PSS1 1 Survivorship Strategy Living with and beyond cancer Anglia Cancer Network Background 1.1 Definition and Overview Today there are over two million people in England with a diagnosis of cancer; 1.24 million cancer survivors had their diagnosis more than five years ago. Cancer prevalence is increasing with the increase in age of the population, and the numbers of people surviving beyond one year is likely to increase with the improvements being made in early diagnosis and treatment approaches. As a result, it is estimated that there will be over four million people living with and beyond cancer in England by 2030. The Survivorship initiative is all about enabling those living with and beyond cancer to get the care and support they need to lead as healthy and active a life as possible, for as long as possible. This involves looking beyond the purely medical aspects of treatment follow-up, into more general topics of health and wellbeing, and physical, psychological, social and economic issues that the patient may face. It should be noted that, whilst the benefits of this initiative are aimed at the period in a patient’s journey following their first treatment, the changes in approach need to start from the point of first diagnosis. 1.2 National Initiatives The NCSI is working to demonstrate that through investment in new models of cancer care there are opportunities to improve quality and efficiency of services as well as improving the patient’s experience. Adopting new cancer ‘aftercare’ models can free up outpatient appointments, reduce A&E attendances and emergency re-admissions, and enable investment in specialist services for those who need them. New approach for survivorship support; Every cancer patient to be offered – Holistic assessment Personalised care plan and subsequent review Treatment summary Education opportunities Risk stratified follow up pathway Work is ongoing nationally to estimate the cost to patients of the current follow-up pathway, and the cost to the NHS of the unplanned events associated with the current follow-up pathway. A useful reference document that describes the NCSI Survivorship Initiative in detail is The National Cancer Survivorship Initiative Vision, co-authored by Macmillan Cancer Support and the Department of Health, published January 2010, Gateway Reference 12879. H:\Cancer Network\Cross Cutting Groups\Survivorship\Documents\active\AngCN-CCG-PSS1_v2 Strategy Living Beyond Cancer.doc Page 2 of 18 Approved and Published: Aug 2012 AngCN-CCG-PSS1 Survivorship Strategy Living with and beyond cancer Anglia Cancer Network 1.3 Local Context Anglia Cancer Network is a geographically large network spanning six Primary care Trusts, ten acute trusts and a number of specialist palliative care providers. The Network has an estimated population of over 2.6 million (Office of National Statistics 2008). Recent data suggests that the number of new cases of cancer (excluding non-melanoma skin cancers) diagnosed annually within Anglia Cancer Network is approximately 13,500 (Cancer Information service data 2006). This equates to an aged standardised incidence of 367 new cases per annum per 100,000 population. Anglia Cancer Network has experienced a continued gradual increase in five year survival among people diagnosed with cancer over the last twenty years. This changing picture in cancer survival presents new challenges for professionals who will have an increasingly important role in supporting people with cancer in living with the longer term impact of the disease. The NCS initiative speaks about five cultural shifts and seven work streams to address the needs of those living with and beyond cancer. Care coordination across health and social care. Care coordination is the joining up of services, coordination, information and communication between care givers, treatment providers, those living with and beyond cancer and their families that creates a seamless experience of care. It is key that this is built into current oncology/haematology pathways. There are models for care coordination in other policy areas and all of these refer to the importance of assessment, care planning, care coordination, review and the importance of joint working across health and social care. Care coordination can be a complex issue due to the wide and varied systems that exist from Trust to Trust to support transitions of care. Establishing what these local systems are, building relationships and networks is crucial to improving care coordination – not just within the NHS, but beyond to social care, charities, community care providers and other agencies that meet the needs of individuals. This will help to facilitate efficient transfers of care throughout the pathway. National Context Please find listed below links to National Initiative documentation: www.dh.gov.uk/en/Publicationsandstatistics/.../DH_111230 http://www.macmillan.org.uk/Documents/GetInvolved/Campaigns/Campaigns/Two_million_reasons .pdf www.dh.gov.uk/en/Publicationsandstatistics/.../DH_131690 QIPP alignment Quality Empowering patients to self care to enable them to seek timely and appropriate support. Introduction of risk stratified pathways of care will result in more effective/efficient service delivery; enhanced patient experience. Reducing the burden of frequent hospital appointments to patients. H:\Cancer Network\Cross Cutting Groups\Survivorship\Documents\active\AngCN-CCG-PSS1_v2 Strategy Living Beyond Cancer.doc Page 3 of 18 Approved and Published: Aug 2012 AngCN-CCG-PSS1 Survivorship Strategy Living with and beyond cancer Anglia Cancer Network Innovation A unique model of care which focuses on individual needs. Developing new ways of providing ongoing supportive care for cancer patients with community and voluntary partners. Productivity Delivery of an effective pathway will result in a reduction in routine outpatient follow up and emergency admissions; through better coordinated and informed care. Reducing the cost of follow up to the NHS. Reducing the number of hospital appointments that have no clinical value. Better utilisation of resources (staff, space, IT). Prevention Emphasis on secondary prevention, personalised and effective pathway that encourages a healthy lifestyle. Preventing unnecessary hospital attendances. Addressing holistic and ongoing care needs of patients to prevent escalation of issues that would require further intervention. e.g. advice on exercise or providing information on late effects of treatment. Shifts A cultural shift, with a focus on recovery, health and wellbeing after cancer treatment A shift from a one-size-fits-all approach to follow up, to personalised care planning based on assessment of individual risks, needs and preferences A shift from clinically-led follow up care to supported self-management A shift from a single model of clinical follow up to tailored support, enabling early recognition of the consequences of treatment, and signs and symptoms of further disease A shift from an emphasis on measuring clinical activity to measuring patient-reported outcomes Work streams Assessment and care planning Managing active and advanced disease Late consequences of treatment Self-care and self-management Work and Finance; including vocational rehabilitation Research Workforce Development In addition, there is an over-arching work stream looking at all the above for the Children and Young People cancer patient community. H:\Cancer Network\Cross Cutting Groups\Survivorship\Documents\active\AngCN-CCG-PSS1_v2 Strategy Living Beyond Cancer.doc Page 4 of 18 Approved and Published: Aug 2012 AngCN-CCG-PSS1 Survivorship Strategy Living with and beyond cancer Anglia Cancer Network Network Involvement There is no reason why the Network Strategy should not be involved in all of the above. However, some of the work streams (such as Work and Finance, and Research) are likely to be more effective if driven nationally, with networks participating as appropriate and eventually taking on board any resulting outcomes. Therefore the Anglia Cancer Network Strategy will focus more on piloting and rolling out approaches to assessment and care planning, managing active and advanced disease, consequences of treatment, information provision, self-management and workforce development. There will need to be a review of the training required to support implementation of the strategy. Also a review of resources that exist across the Network. Where there are gaps, possible alternative sources of support and opportunities for service development or re design. At every stage of this project consideration should be given to the key role primary care colleagues can play in the cancer survivor’s journey and experience. Engaging primary care colleagues in the smooth transition at discharge, into community care and supporting a shift in reliance for support from the hospital to primary care. 2 Network strategic aims for survivorship 2.1 Scope See Appendix 1. 2.2 Key Indicators and milestones This strategy underpins the following network strategic objectives: Key Objective 3: To Help Patients Live With and After Cancer. Measures in support of this include: Number of patients with a ‘risk-stratified’ care plan, which has also been communicated to their GP Patient satisfaction (indicators to be agreed, but likely to include information and communication, GP follow-up and support, awareness of availability of 24/7 advice, awareness of key worker support, self-administered care) Reductions in Emergency Admissions/telephone enquiries/out patient follow up Aspects of Community Services Support (e.g. availability of District Nurses, AHPs, availability of Rehabilitation Equipment, voluntary sector support) Number of patients with end of treatment summary records Reductions in hospital follow-up appointments Note that National Cancer Patient Experience Survey 2010 questions 15, 16, 17, 18, 19, 25, 26, 27, 49, 50, 51, 52, 63, 64, 65, 66 could help to provide some measures here This strategy also has a part to play in the Network’s Key Objective 8: To Influence the Effective and Cost-Efficient Commissioning of Cancer Services. The measure in support of this would relate to Cancer Spend and Cost per Head (reduction of). H:\Cancer Network\Cross Cutting Groups\Survivorship\Documents\active\AngCN-CCG-PSS1_v2 Strategy Living Beyond Cancer.doc Page 5 of 18 Approved and Published: Aug 2012 AngCN-CCG-PSS1 Survivorship Strategy Living with and beyond cancer Anglia Cancer Network 2.3 Network Model Within the context of the current changes taking place within primary and secondary care the Network model for survivorship support should be adopted and steps taken to implement the five key objectives by March 2012. Network approach to psychological support already in place. Educational opportunities, Self-care/self-management: Joint project with Macmillan Cancer Support under way, to audit reported patient experience and benefit of survivorship courses – HOPE, New Perspectives, MI Wellbeing and the Moving On course. Will report findings mid 2012. Scoping exercise commenced across the network to establish availability of support and resources for cancer survivors. As well as any gaps in service provision and resources/services. Training available for Health Care Professionals Psycho-sexual support for cancer patients – Gynae CNSs Advanced Communication Skills training Skills in psychological assessment – level 2 Practice Nurse Development Course – Holistic Assessment H:\Cancer Network\Cross Cutting Groups\Survivorship\Documents\active\AngCN-CCG-PSS1_v2 Strategy Living Beyond Cancer.doc Page 6 of 18 Approved and Published: Aug 2012 AngCN-CCG-PSS1 Survivorship Strategy Living with and beyond cancer Anglia Cancer Network 2.4 Implementation plan - Areas of Focus April 2011 – March 2013 H:\Cancer Network\Cross Cutting Groups\Survivorship\Documents\active\AngCN-CCG-PSS1_v2 Strategy Living Beyond Cancer.doc Page 7 of 18 Approved and Published: Aug 2012 AngCN-CCG-PSS1 Survivorship Strategy Living with and beyond cancer Anglia Cancer Network For each of the key objectives consideration should be given to ensuring equitable access for all cancer patients regardless of socio economic status and ethnic background. As well as long term sustainability, growth and development of services to meet patients needs. Holistic assessment All cancer patients should be offered an assessment at key points in their pathway – at diagnosis, during treatment and at the end of treatment as a minimum. The aim of this assessment is to identify any emotional, physical, social, spiritual and psychological needs at that time, for which they would like support/advice/information. Treatment summary Part of the joint work done with NHSI and Macmillan focused on what information GPs said they needed to enable them to effectively assess/review and support cancer patients following treatment. A succinct summary of the diagnosis, treatment, follow up and care delivered as well as possible side effects and late effects. Contact names and numbers for effective enquiries, were what they asked for. A treatment summary provides the GP with this information. Introduce a treatment summary record across the network so that all cancer patients have a summary sent to their GP, after completing treatment. (Individual depts. may send treatment summaries following the completion of specific treatments i.e. surgery, chemotherapy, radiotherapy) An overall treatment summary would still be required at the completion of their pathway. For those patients where future treatment is likely, the summary is still relevant to inform the GP of the treatment delivered, follow up plan and their involvement in future care. Care plan All cancer patients should have a care plan, which includes information about their diagnosis, treatment and follow up care. Possible side effects/late effects of treatment, contact names/numbers for support/advice/information. Key issues or concerns the individual may have and advice/support given. Goals/hopes for the future as part of their individual self-management plan. (Some areas may choose to adopt individual documents for the treatment summary and care plan. Or use a combined one) See Appendix for Network Example. Risk stratified follow up pathways Current follow up pathways in many areas have been shown to be ineffective in meeting the patients needs, vary widely across teams and are not cost effective or sustainable in the long term. The Network along with Site Specific Groups, need to explore opportunities to review and re design traditional follow up pathways to effectively meet patient’s needs and free up valuable resources for reinvestment It is proposed that with the key supportive elements in place and defined criteria for referral, based on the individual patient and their diagnosis. The individual could be put into one of two follow up pathways: Supported self management Complex care H:\Cancer Network\Cross Cutting Groups\Survivorship\Documents\active\AngCN-CCG-PSS1_v2 Strategy Living Beyond Cancer.doc Page 8 of 18 Approved and Published: Aug 2012 AngCN-CCG-PSS1 Survivorship Strategy Living with and beyond cancer Anglia Cancer Network Demonstrate potential savings for reinvestment in specific disease sites across the network if these changes are implemented Areas for reinvestment may include – CNS/Key worker follow-up/review Education programme/information day Support services i.e. counselling, psychologist, complimentary therapies. Education and support opportunities In order for patients to feel knowledgeable and confident about managing their condition long term they need to have had the opportunity to access timely and relevant information and support. There are a number of educational opportunities available for patients to access across the network, but some areas may wish to develop their own See Appendix 2 3 To ensure all within the Network are aware of the educational opportunities available Support the introduction of education days/programmes Exercise referral schemes Occupational/rehabilitation activities available Delivering the Strategy 3.1 Outline Implementation Plan The implementation plan will follow once the strategy has been accepted by the Network board. 3.2 Service User Engagement CSUG involvement to promote/develop key aspects of the model. Audit documentation and education programmes to gauge effectiveness and shape development. 3.3 Coordination of Activities and Information The following groups have been set up to lead and support the strategy and to work in partnership to implement the key enablers. Stakeholder Group Steering Group Patient Information Project Rehabilitation steering group Website Investment in Education and Learning Provide support/advice and training where appropriate to implement use of psychological assessment tools, treatment summary and care plan. Provide support and guidance in accessing/implementing education and self-management programmes to support cancer survivors. 4 Governance and Monitoring H:\Cancer Network\Cross Cutting Groups\Survivorship\Documents\active\AngCN-CCG-PSS1_v2 Strategy Living Beyond Cancer.doc Page 9 of 18 Approved and Published: Aug 2012 AngCN-CCG-PSS1 Survivorship Strategy Living with and beyond cancer Anglia Cancer Network The project will be overseen by a stakeholder Steering Group accountable to the Transforming Cancer Care Group and subsequently the Network Board. 5 Equality and Diversity Statement This document complies with the Suffolk PCT Equality and Diversity statement – an EqIA assessment is available on request to Anglia Cancer Network PQ Manager, Gibson Centre, Exning Road, Newmarket, CB8 7JG. Disclaimer It is your responsibility to check against the electronic library that this printed out copy is the most recent issue of this document. Please notify any changes required to the Anglia Cancer Network PQ Manager Document management Document ratification and history Approved by: AngCN Nurse Director Date approved: Aug 2012 Review period: Authors: 2 years Survivorship Lead, AngCN; Project Manager Survivorship AngCN Version number as approved and 2 published: Date placed on electronic library: August 2012 Document Owner: Anglia Cancer Network Unique identifier no.: AngCN-CCG-PSS1 H:\Cancer Network\Cross Cutting Groups\Survivorship\Documents\active\AngCN-CCG-PSS1_v2 Strategy Living Beyond Cancer.doc Page 10 of 18 Approved and Published: Aug 2012 AngCN-CCG-PSS1 Survivorship Strategy Living with and beyond cancer Anglia Cancer Network Appendix 1 Survivorship Programme Framework Version 3 AngCN Initiatives Considerations To Include In Each Workstream Cultural Shift - focus on recovery and wellbeing Shifts Assessment & Care Planning Self-Management Tailored Support following Treatment NCSI Workstreams End of Treatment Record (IHT) Over-Arching Workstream Children & Young People Patient Information Psychology assessment and counselling (CUHFT) Assessment, Information & Care Planning Assessment of efficacy of Oncolodge IT database for TYAs (CUHFT/ Leeds) Managing Active & Advanced Disease Exercise Programme (CUHFT) Impact on Fertility for CYP (CUHFT) Consequences of Treatment Managing Chronic Fatigue (CUHFT) Self-Care and SelfManagement Pilots of Macmillan SelfManagement Courses (AngCN) Moving On Programme (IHT) Website for CYP patients and families/ carers (CUHFT) Work & Finance/ Vocational Rehabilitation Research Workforce Development Evaluation Shift - Patient Reported Outcome Measures H:\Cancer Network\Cross Cutting Groups\Survivorship\Documents\active\AngCN-CCG-PSS1_v2 Strategy Living Beyond Cancer.doc Page 11 of 18 Approved and Published: Aug 2012 Commissioning Workforce Development AngCN-CCG-PSS1 Survivorship Strategy Living with and beyond cancer Anglia Cancer Network Appendix 2 MACMILLAN SUPPORTED SELF MANAGEMENT INTERVENTIONS PILOTS FOR AngCN SUMMARY December 2010 New Perspectives This is a six-week small group course led by people who have had cancer. It is a version of the Expert Patient Programme, licensed by Stanford University in the USA. The content, which was adapted to better reflect the needs of people living with cancer, focuses on problem-solving and action planning to promote a healthy lifestyle, such as healthy eating and managing fatigue as well as addressing issues such as dealing with uncertainty and decision making. The generic version of this course had been run as “Living with Cancer” until 2009. It is well evaluated by patients but reaches only a small number of people. It has run several times a year for several years in Cambridge and Mount Vernon. There are plans to run four programmes in 2010/early 2011 in Cambridge and one in Huntingdon. One of the programmes in Cambridge and the one in Huntingdon will form part of the AngCN pilot study. HOPE (Help to Overcome Problems Effectively) This small group course follows a similar structure as the New Perspectives, however on this course; the emphasis is more on facilitating the use of participants’ own personal resources and focusing on finding solutions than problem deconstruction. The course can be facilitated by people who have had cancer or by professionals and utilises a taster session for prospective participants to determine the final content of the course. The piloting of this course has recently completed with significant positive evaluation. Macmillan is looking to roll out the course nationally with interested organisations. A carer-specific version and a version for the South Asian community are in development with piloting of these courses due to take place later this year, again with a view of national roll-out dependent on positive evaluation of effectiveness. Two pilots are taking place in 2011 in Anglia, with facilitator training to be run in advance. Mi Wellbeing A new partnership for Macmillan, just developing an on-line cancer specific programme now, ready to pilot from early December. This pilot will be available to all patients across AngCN. Self Management Toolkit This is a selection of activities (modified from self management workshops currently offered) that can be used by self help and support groups to help manage day-to-day life living with cancer. The activities are facilitated by a volunteer from the group who has undergone training from Macmillan. Volunteer facilitators trained in 2009 are using the draft toolkit at present. A modified version of the toolkit has been developed for use within Macmillan’s Health and Wellbeing Clinic project scheme. The toolkit will be piloted in AngCN with three or four interested patient support groups. H:\Cancer Network\Cross Cutting Groups\Survivorship\Documents\active\AngCN-CCG-PSS1_v2 Strategy Living Beyond Cancer.doc Page 12 of 18 Approved and Published: Aug 2012 AngCN-CCG-PSS1 Survivorship Strategy Living with and beyond cancer Anglia Cancer Network Moving On This is a four-week course run monthly for up to ten patients and carers, facilitated by a nurse specialist at Ipswich Hospital. The course covers a wide range of topics including diet and exercise, managing symptoms, anxieties and fears, psychosexual effects of cancer, relationships, and resources to support recovery. The programme encourages patients to share their experiences and to explore ways of overcoming or adapting to the changes. The aim of the programme is to support patients and carers to feel confident and have the knowledge and appropriate skills/resources to manage their condition. Goal setting and selfmanagement are key objectives. This is an established programme and will run every month during 2011, except for April and August. It is open to anyone affected by cancer (at least 6/52 post completion of treatment) H:\Cancer Network\Cross Cutting Groups\Survivorship\Documents\active\AngCN-CCG-PSS1_v2 Strategy Living Beyond Cancer.doc Page 13 of 18 Approved and Published: Aug 2012 AngCN-CCG-PSS1 Survivorship Strategy Living with and beyond cancer Anglia Cancer Network Appendix 3 INSERT TRUST LOGO TREATMENT SUMMARY and CANCER CARE PLAN This care plan summarises information about my diagnosis, management, actions to resolve any current concerns, follow up plan, symptoms to look out for, and steps I need to take to stay healthy. My Contact Information Name: Telephone Number: Mobile Number: Address: Main Carer: Relationship: Age: NHS Number: Telephone Number: GP: Hospital Consultant: GP telephone number: My Care Planning Session Date: Duration: Completed with: Name: Role: Contact number: Outcome: My Cancer Cancer diagnosis: Date of diagnosis: Brief management history: (e.g. surgery, chemotherapy, radiotherapy, hormone treatment, surveillance, watchful waiting) Significant events during treatment: (side effects, weight loss/gain) H:\Cancer Network\Cross Cutting Groups\Survivorship\Documents\active\AngCN-CCG-PSS1_v2 Strategy Living Beyond Cancer.doc Page 14 of 18 Approved and Published: Aug 2012 AngCN-CCG-PSS1 Survivorship Strategy Living with and beyond cancer Anglia Cancer Network Research/clinical trials: Information Prescription Information Prescription offered/dispensed: Record of Information given: Unique Identifier: Actions required by GP GP Cancer Care Review Date Ongoing medication for GP to review/dispense: Osteoporosis and Cardiac screening: Holistic Assessment Date of assessment: ** INSERT TRUST HOLISTIC ASSESSMENT TOOL ** My Assessment During my assessment I identified the following key concerns where further help and support is required or requested 1. Action agreed: 2. Action agreed: 3. Action agreed: H:\Cancer Network\Cross Cutting Groups\Survivorship\Documents\active\AngCN-CCG-PSS1_v2 Strategy Living Beyond Cancer.doc Page 15 of 18 Approved and Published: Aug 2012 AngCN-CCG-PSS1 Survivorship Strategy Living with and beyond cancer Anglia Cancer Network Summary of my goals: My follow up plan (example) Follow up Year 1 recommendations Hospital or GP appointment or telephone clinic Year 2 Year 3 Year 4 Year 5 Scans/ investigations/ blood test Test Results Log: Date: Management: Blood test result Other tests Lifestyle advice and self management programme Smoking cessation Diet and weight management Exercise and managing fatigue Holidays and insurance Complementary therapies Managing anxiety and stress Relationships and sexuality Treatment side effects/late effects and what to do about them Side effects/Late effects What to do 1. 2. 3. 1. 2. 3. Signs and symptoms to look out for and seek advice on Signs and symptoms Contact: 1. 2. 3. 4. H:\Cancer Network\Cross Cutting Groups\Survivorship\Documents\active\AngCN-CCG-PSS1_v2 Strategy Living Beyond Cancer.doc Page 16 of 18 Approved and Published: Aug 2012 AngCN-CCG-PSS1 Survivorship Strategy Living with and beyond cancer Anglia Cancer Network Key Contacts i.e. - Hospital switchboard: Information centre: Day unit: Ward: Hospital Key Worker: Name: Role: Contact details: Contact for: Blood test and scan results: From Consultant in clinic or GP team depending on who requested the test Appointment enquiries: Who to contact for what: Useful organisations: If you have any other concerns please do not hesitate to contact your Nurse Specialist/Key Worker, information centre, GP. Next Steps i.e. Date of next review (if required) My Second Care Plan Review Date: Duration: Completed by: Outcome of this meeting: Contact number: Reason for care plan review: My Second Assessment In your assessment I have identified the following key concerns where further help and support is required or requested. 1. Action agreed: 2. Action agreed: 3. Action agreed: H:\Cancer Network\Cross Cutting Groups\Survivorship\Documents\active\AngCN-CCG-PSS1_v2 Strategy Living Beyond Cancer.doc Page 17 of 18 Approved and Published: Aug 2012 AngCN-CCG-PSS1 Survivorship Strategy Living with and beyond cancer Anglia Cancer Network Summary of goals: H:\Cancer Network\Cross Cutting Groups\Survivorship\Documents\active\AngCN-CCG-PSS1_v2 Strategy Living Beyond Cancer.doc Page 18 of 18 Approved and Published: Aug 2012