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Specialised Services Policy: (Holiday) Haemodialysis Haemodialysis Away From Base Document Author: Executive Lead: Approved by: Issue Date: Review Date: Document No: Manager, Welsh Renal Clinical Network Director of Finance TBC Version: Consultation draft Specialised Services Policy: (Holiday) Haemodialysis Away from Base Page 1 of 16 Document History Revision History Version Revision No. date Summary of Changes 0.1 Draft for consultation Updated to version no.: Date of next revision Consultation Name Approvals Name WRCN Board Date of Issue Version Number Date of Issue TBC Version No. Policy Statement Background Welsh residents who are routinely having unit haemodialysis (UHD) may seek to do so for short spells of care away from their normal base and the cost of that care will be met by WHSSC. This can be made necessary by unplanned health or social events as well as planned events such as holidays. Non-Welsh residents may seek to come to Wales on a planned basis and require dialysis whilst temporarily resident or on leave. It is the policy of the Welsh Renal Clinical Network to plan to enable all units to have sufficient capacity to enable this service to be offered although continuation of routine care for local residents will remain the priority. A charge to meet the cost of the care will be made by the unit haemodialysis provider for patients not registered with a Welsh GP. Version: Consultation draft Specialised Services Policy: (Holiday) Haemodialysis Away from Base Page 2 of 16 Summary of Access Criteria For Welsh patients to be dialysed in Wales no internal charging mechanism is required. This will be managed through the Long Term Agreements between the Welsh Provider Health Boards and WHSSC/WRCN. This means that there is no requirement for prior approval for a Welsh patient going elsewhere in Wales for holiday haemodialysis. The application of this policy is for haemodialysis patients who are registered with a Welsh GP. Funding for Haemodialysis Away From Base is available for locations where there are national reciprocal funding arrangements and these are identified within the policy. Any requests for outside of this area will need to be considered on an individual / exceptional basis as part of WHSSC’s IPFR process. Responsibilities Patients or representative The individual patients and families will be responsible for initially identifying locations and preferred unit for treatment. The patient must try and give sufficient notice to allow all arrangements to be made where possible: Within Wales and the UK, minimum of six weeks’ notice should be given wherever possible. Outside of the UK, three months notice should be given as a minimum to enable the necessary clinical information and tests. Emergencies and urgent ‘short notice’ events will be managed as quickly as possible. Referrers 2 Inform the patient that this treatment is not routinely funded outside the criteria in this policy; and 3 Refer via the agreed pathway i.e. the Holiday Dialysis Request Form, or an IPFR request where there are unusual circumstances which must be submitted to WHSSC IPFR team for Version: Consultation draft Specialised Services Policy: (Holiday) Haemodialysis Away from Base Page 3 of 16 processing. The administration of the funding application and the sharing of relevant clinical information between units will be the responsibility of the patient’s normal renal service provider. WHSSC The IPFR team will acknowledge receipt and respond to routine applications using the agreed checklist. Complex or unusual requests will require consideration at WHSSC IPFR panel WHSSC will respond in time to enable the referrer and patient to make their arrangements. Routine applications will be reviewed and decided upon within two weeks. Complex cases will require longer, and minimum of four weeks to enable discussion at monthly IPFR meetings. WRCN The WRCN will be responsible for reviewing this policy and its implementation across Wales. The WRCN will oversee the approval process for funding for Welsh patients requiring DAFB within Wales are within the countries covered by the policy, advising on both routine and unusual applications. Work with providers in Wales as part of capacity management to secure where appropriate, capacity for holiday dialysis. Other key issues Routine provision of haemodialysis to the local population is the absolute priority. Whilst recognising the importance and value of holiday dialysis, access to a specific location or session cannot be guaranteed. Rarely, it may also be appropriate to advise a patient that a period of suspension from the renal transplant waiting list is necessary to ensure the patient is not incubating blood borne virus infections that would be accelerated by the immunosuppression required for renal transplantation. Any absence over a month will require a clinical Version: Consultation draft Specialised Services Policy: (Holiday) Haemodialysis Away from Base Page 4 of 16 hand over of responsibility for care. If a patient is away for a prolonged time from their usual renal dialysis unit then they may not be able to resume their original renal dialysis slot on their return. Version: Consultation draft Specialised Services Policy: (Holiday) Haemodialysis Away from Base Page 5 of 16 Table of Contents 1. Aim.....................................................................................7 2. Scope..................................................................................7 2.1 Patient Group ................................................................7 3. Access Criteria .....................................................................8 3.1 3.2 3.3. 3.4 3.5 3.6 Countries covered by the policy .......................................8 Other Factors for consideration ...................................... 10 Exclusions ................................................................... 10 Exceptions................................................................... 10 Responsibilities ............................................................ 10 Individuals studying / working away from Wales .............. 11 4. Short notice requests ......................................................... 11 4.1 Emergencies ................................................................ 11 5. Providing (Holiday) Temporary haemodialysis away from base . 12 6. Putting Things Right: Raising a Concern ................................ 13 7. Equality Impact and Assessment .......................................... 13 8. Further Information ............................................................ 14 Appendix - Summary guide ..................................................... 15 Version: Consultation draft Specialised Services Policy: (Holiday) Haemodialysis Away from Base Page 6 of 16 1. Aim 1.1 Introduction Haemodialysis is the main dialysis modality used for patients with End Stage Renal Disease. Typically this is undertaken during three 4 hour sessions a week either at home or at a haemodialysis unit. This policy is for the planning of temporary haemodialysis Away From Base (known as “Holiday Dialysis”). The policy applies to residents registered to a GP in Wales. The purpose of this document is to: Set out the circumstances under which patients registered with a Welsh GP will be able to access temporary Dialysis Away From Base (DAFB or Holiday Dialysis) services; Clarify the referral process; and Define the criteria that patients must meet in order to access treatment. And Provide guidance to units in Wales in providing (Holiday) Temporary haemodialysis away from base to both Welsh and non-Welsh residents. 1.2 Relationship with other Policies and Service Specifications This document should be read in conjunction with the following documents: All Wales Policy: Making Decisions on Individual Patient Funding Requests (IPFR). 2. Scope 1. Purpose 2.1 Patient Group All patients registered with a Welsh GP who are undertaking haemodialysis either at home or at a haemodialysis unit. Version: Consultation draft Specialised Services Policy: (Holiday) Haemodialysis Away from Base Page 7 of 16 3. Access Criteria 3.1 Countries covered by the policy Patients will not be expected to pay for DAFB within the United Kingdom (UK). If a patient is planning to go abroad there are different arrangements as to whether patients will need to pay which depends on the country. In line with the national guidance the NHS will not refund travel or accommodation costs connected to renal dialysis treatment abroad. Member States of the European Economic Area and Switzerland The European Economic Area (EEA) is a free trade zone between countries of the European Union (EU), Iceland, Norway and Liechtenstein. The regulations on access to healthcare in the EEA also apply to Switzerland. The European Health Insurance Card (EHIC) replaced the old E111 in 2006. The EHIC permits access to state healthcare at reduced cost and sometimes free of charge. It covers treatment that is needed to allow continuation of stay until planned return. It also covers treatment of pre-existing medical conditions. It does not cover elective treatment. Any person who is ordinarily resident in the UK, and is of British, other EU/EEA or Swiss nationality, is eligible for an EHIC. Application is available online and is free of charge via the official EHIC application form. Possession of an EHIC is a requirement to be able to receive “all necessary state funded treatment” free of charge. A European Health Insurance Card will be required. These can be obtained via https://www.gov.uk/european-health-insurance-card. The European Economic Area (EEA) consists of the EU member states: Austria, Belgium, Bulgaria, Cyprus, the Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Latvia, Lithuania, Luxembourg, the Netherlands, Malta, Poland, Portugal, Romania, Slovenia, Slovakia, Spain, Sweden, and the UK; plus Iceland, Lichtenstein and Norway. Switzerland has agreed to operate the same arrangements as the EU countries. Within the European Economic Area (EEA): Version: Consultation draft Specialised Services Policy: (Holiday) Haemodialysis Away from Base Page 8 of 16 State sector providers: Within the EEA patients can use their EHIC card if the provider is within the state sector. The EHIC will entitle the patient to renal dialysis for free or at a reduced cost, but the patient will need to make arrangements directly with the provider in advance of their visit. Patients should take this opportunity to find out what contribution (if any) is required under the health system of the country they are visiting. Patients must have a valid passport and EHIC card. Private sector providers: If there is no space available or no local state provider, then NHS Wales will fund unit haemodialysis at an independent / private sector provider. Outside of Member States of the European Economic Area and Switzerland Reciprocal / bilateral agreements There are other countries and territories outside of the EEA where there is some form of reciprocal arrangement which is variable in cover. Patients visiting any of these countries should be able to access renal dialysis for free or at a reduced cost. Again, patients must make arrangements for the renal dialysis directly with the provider, in advance of treatment. Different countries require different proofs of identity and/or residency. Further information about which countries the UK has reciprocal healthcare agreements with and how to access treatment in those countries can be found here: http://www.nhs.uk/NHSEngland/Healthcareabroad/countryguide/No nEEAcountries/Pages/Non-EEAcountries.aspx Other countries Patients will have to fund their own renal dialysis if travelling to a country, outside of the EEA with which the UK has no reciprocal agreement. Reimbursement is not available in these circumstances. Patients may be able to apply for funding via the IPFR process on an exceptional basis for payment of any renal dialysis outside of the EEA or reciprocal countries. An example of an exceptional case would be a patient who is to receive NHS funded care in a nonreciprocal country and will require renal dialysis during their stay whilst they receive this treatment. Version: Consultation draft Specialised Services Policy: (Holiday) Haemodialysis Away from Base Page 9 of 16 3.2 Other Factors for consideration Duration Up to four weeks maximum away from base in one period will be routinely agreed. Greater durations will require further consideration to ensure that the clinical management of an individual is clear and that matters such as Transplant Waiting List status are clarified. Financial limits Charges associated with (holiday) haemodialysis have remained relatively unchanged over the past three years both within and outside of Wales. At present, there is no cap placed on sessional price due to variation in prices dependent upon location. However, charges above £250 per session will be scrutinised to seek assurance that more affordable options are not available. 3.3. Exclusions This policy is only for adults registered with a Welsh GP. 3.4 Exceptions If the patient does not meet the criteria for treatment, but the referring clinician believes that there are exceptional grounds for treatment an Individual Patient Funding Request (IPFR) can be made to WHSSC under the All Wales Policy for Making Decisions on Individual Patient Funding Requests (IPFR). If the patient wishes to be referred to a provider out of the agreed pathway, an IPFR should be submitted. 3.5 Responsibilities The patient / family / carer will: Identify the location and preferred unit; Initiate contact with the preferred unit to determine if space is available for desired times; Advise their home unit of availability. Version: Consultation draft Specialised Services Policy: (Holiday) Haemodialysis Away from Base Page 10 of 16 The referring (Welsh) unit will: Inform the patient that this treatment is not routinely funded outside the criteria in this policy; Discuss the DAFB unit’s service with the patient; Advise the patient of any risks including discussion about emergencies and transplant status whilst away; Confirm that there is the need for a funding agreement with WHSSC for the treatment; Submit a Holiday Dialysis request form or an IPFR request; Where possible, there should be a period of at least six weeks between the date of application and holiday. All referrals must be made with a completed Holiday Dialysis form (Annex X) which must be authorised by the patient’s regular Consultant Nephrologist. The WHSSC IPFR Team will: Acknowledge receipt of application; Routine applications compliant with the national policy will be approved using the agreed checklist; Unusual / complex cases to be discussed with WRCN Manager for advice and guidance; Processing of applications will be done in a timely manner to avoid delay. 3.6 Individuals studying / working away from Wales There will be some individuals who through the circumstances of work or education will need semi-permanent but flexible arrangements e.g. Term time haemodialysis in England or dialysis near location of employment Monday to Friday. This will require an application via the IPFR process and will need to include a clear explanation on governance and responsibilities. 4. Short notice requests 4.1 Emergencies It is understood that emergencies happen which may mean little notice. In such circumstances, the policy can be applied retrospectively. Version: Consultation draft Specialised Services Policy: (Holiday) Haemodialysis Away from Base Page 11 of 16 Examples Delay in return journey due to unforeseen circumstances means that additional haemodialysis is required. Unforeseen family emergency requires urgent travel. In these circumstances, the Welsh haemodialysis unit will liaise with WHSSC on your behalf. 5. Providing (Holiday) Temporary haemodialysis away from base Where possible, units should look to offer temporary haemodialysis to Welsh and non-Welsh patients. However, providing routine chronic and acute haemodialysis to local residents remains the priority and units should monitor capacity plans regularly. Holiday dialysis should only be offered when there is sufficient capacity in any given period and cancellation once booked should be avoided wherever possible. Blocks of greater than two weeks should not be routinely approved as part of holiday haemodialysis. This is to allow access to the facility for as many patients as possible who are seeking holiday haemodialysis, particularly during popular periods. Holiday and second homes There will be circumstances where some patients who are nonWelsh residents have holiday homes and who will seek to undertake haemodialysis at a Welsh Unit. It is recommended that each process is reviewed on individual merit but this should have some structure and agreed frequency. The practicalities of providing ad hoc chronic dialysis for non-permanent residents, if not planned, presents significant challenges for units. It is proposed that routinely, such patients will only be allowed four weeks in a 12 month period. This is to allow fair access to other visitors. Turning up for dialysis without prior agreement could cause confusion around care and treatment management and must be avoided wherever possible. In such circumstances, emergency treatment will be provided and the patient advised to return to base unit. Version: Consultation draft Specialised Services Policy: (Holiday) Haemodialysis Away from Base Page 12 of 16 6. Putting Things Right: Raising a Concern Whilst every effort has been made to ensure that decisions made under this policy are robust and appropriate for the patient group, it is acknowledged that there may be occasions when the patient or their representative are not happy with decisions made or the treatment provided. The patient or their representative should be guided by the clinician, or the member of NHS staff with whom the concern is raised, to the appropriate arrangements for management of their concern: When a patient or their representative is unhappy with the decision that the patient does not meet the criteria for treatment further information can be provided demonstrating exceptionality. The request will then be considered by the All Wales IPFR Panel. If the patient or their representative is not happy with the decision of the All Wales IPFR Panel the patient and/or their representative has a right to ask for this decision to be reviewed. The grounds for the review, which are detailed in the All Wales Policy: Making Decisions on Individual Patient Funding Requests (IPFR), must be clearly stated. The review should be undertaken, by the patient's Local Health Board; When a patient or their representative is unhappy with the care provided during the treatment or the clinical decision to withdraw treatment provided under this policy, the patient and/or their representative should be guided to the LHB for NHS Putting Things Right. For services provided outside NHS Wales the patient or their representative should be guided to the NHS Trust Concerns Procedure, with a copy of the concern being sent to WHSSC. 7. Equality Impact and Assessment The Equality Impact Assessment (EQIA) process has been developed to help promote fair and equal treatment in the delivery of health services. It aims to enable Welsh Health Specialised Services Committee to identify and eliminate detrimental treatment caused by the adverse impact of health service policies upon groups and individuals for reasons of race, gender re-assignment, disability, sex, sexual orientation, age, religion and belief, marriage and civil partnership, pregnancy and maternity and language (welsh). Version: Consultation draft Specialised Services Policy: (Holiday) Haemodialysis Away from Base Page 13 of 16 The EqIA for this policy has concluded that there is no impact on access on the grounds of the Equality Act (2010). A copy of the impact assessment can be made available upon request. 8. Further Information The Welsh Kidney Patients Association provides useful guidance and advice on holiday dialysis and this can be sourced via the following website: http://www.wkpa.org.uk/holidayfacilities.html The National Kidney Federation provides useful guidance on holiday dialysis and this can be sourced via the following website: http://www.kidney.org.uk/help-and-info/holidays/holidays-tips-hdhol Version: Consultation draft Specialised Services Policy: (Holiday) Haemodialysis Away from Base Page 14 of 16 Appendix - Summary guide 1. For haemodialysis patients registered with Welsh GP Patient to identify location and unit. The NHS will then complete the necessary applications and paperwork including tests, etc. Within Wales Duration allowed - More than four weeks / 12 sessions in one block will require confirmation of clinical responsibility and whether this transfers to new unit (temporarily). Notice - Six weeks minimum (unless emergency) Funding - Completely funded via the Welsh Renal Clinical Network Outside of Wales Duration allowed - More than four weeks / 13 sessions in one block will require confirmation of clinical responsibility and whether this transfers to new unit (temporarily). Notice - Three months minimum (unless emergency) Funding - Will depend on location: Within European Economic Area and Switzerland – Fully funded via Welsh Renal Clinical Network; Where there are bilateral / reciprocal arrangements outside of the EEA and Switzerland, funding can very from no support to all funded via WRCN (e.g. Australia); For all other countries, cost is fully with patient. 2. For patients not registered with Welsh GP wanting (holiday) haemodialysis away from base in Wales Duration - Routinely up to two weeks will be offered in a single period. More than this will need to be carefully considered so as i. not to jeopardise routine provision and ii. prevent other holiday patients. Frequency - not more than four weeks in a 12 month period in the same location to allow opportunity for other visitors. Funding - Will depend upon the individual’s residency whether this is paid for by their health service or whether this is a direct transaction between the individual and the Welsh dialysis provider. Version: Consultation draft Specialised Services Policy: (Holiday) Haemodialysis Away from Base Page 15 of 16 Approval of funding by patients health service will be required before attendance to holiday dialysis unit. Version: Consultation draft Specialised Services Policy: (Holiday) Haemodialysis Away from Base Page 16 of 16