Establishment of the Wales Infected Blood Support Service. Martin Riley or

Transcription

1 AGENDA ITEM:5.4 The report is/is not Exempt Teitl yr Adroddiad/Title of Report Establishment of the Wales Infected Blood Support Service ARWEINYDD: LEAD: AWDUR: AUTHOR: SWYDDOG ADRODD: REPORTING OFFICER: MANYLION CYSWLLT: CONTACT DETAILS: Anne Louise Ferguson, Director of Legal & Risk Services & Welsh Risk Pool Services Martin Riley, Head of Finance Andy Butler, Director of Finance & Corporate Services Martin Riley or Pwrpas yr Adroddiad: Purpose of the Report: The purpose of this report is to provide the Committee with information about a new Service being established within Wales, the role of NWSSP in managing this Service and the next steps. Llywodraethu/Governance Amcanion: Objectives: Tystiolaeth: Supporting evidence: Excellence to develop an organisation that delivers a process excellence through a focus on continuous service improvement Service Development to develop and extend the range of high quality services provided to NHS Wales and the wider public sector Written statement on 30 th March 2017 by Vaughan Gething Cabinet Secretary for Health, Wellbeing & Sport Future support for those affected by contaminated blood following NHS treatment Ymgynghoriad/Consultation : Welsh Government Officials Velindre NHS Trust (Welsh Blood & Cancer Centre) Partnership Committee Page 1 of 10

2 Adduned y Pwyllgor/Committee Resolution (insert ): DERBYN/ APPROVE ARNODI/ ENDORSE TRAFOD/ DISCUSS NODI/ NOTE Argymhelliad/ Recommendation The Committee is asked to NOTE the report Crynodeb Dadansoddiad Effaith: Summary Impact Analysis: Cydraddoldeb ac No direct impact amrywiaeth: Equality and diversity: Cyfreithiol: Not applicable Legal: Iechyd Poblogaeth: No Impact Population Health: Ansawdd, Diogelwch No impact a Profiad y Claf: Quality, Safety & Patient Experience: Ariannol: All costs will be covered by Welsh Government as Financial: part of the set up and ongoing running of the new Risg a Aswiriant: Risk and Assurance: Safonnau Iechyd a Gofal: Health & Care Standards: Gweithlu: Workforce: Deddf Rhyddid Gwybodaeth/ Freedom of Information service This report provides assurance to the committee that NWSSP has robust risk management processes in place. Access to the Standards can be obtained from the following link: 64/24729_Health%20Standards%20Framework_2 015_E1.pdf Standard 1.1 Health Promotion, Protection and Improvement Additional Resource may be required to administer the new scheme. Open. The information is disclosable under the Freedom of Information Act Partnership Committee Page 2 of 10

3 INTRODUCTION In the 1980 s, persons became infected with the HIV and /or hepatitis C (HCV) virus through the blood system. Some were infected after receiving transfusions of blood components (red cells, platelets, or plasma), usually in a hospital and often in the course of surgery. Others became infected after using factor concentrates (blood products used to treat haemophilia) that were made from the pooled donations of plasma. Since 1988, ex-gratia financial support has been provided to people across the UK affected by HIV and/or hepatitis C (HCV) through treatment with NHS supplied blood or blood products. This has been delivered through a number of organisations on behalf of governments. For many years, there has been a significant degree of dissatisfaction with the current system. Concerns raised include, the different payment policies operated by the schemes and the bureaucracy involved in recipients wishing to make claims to more than one such scheme; inadequate support for people in respect of the impact on health and wellbeing; and a lack of clear underpinning rationale across the whole support system. A consultation was held by the Department for Health for England and responses were invited across the whole of the UK. The Welsh Government position was that the consultation provided the platform for reform for those affected. Following this the Cabinet Secretary for Health, Well-Being and Sport wrote to those contaminated within NHS Wales to seek views and workshops were held in Wales to explore future options for a new Wales scheme. CABINET SECRETARY ANNOUNCEMENT OF A NEW WELSH SCHEME On 30 th March 2017 the Cabinet Secretary for Health, Well-Being and Sport announced new support arrangements for individuals and their families affected by hepatitis C and HIV through treatment with contaminated blood in Wales. These arrangements will come into effect in the coming year and be administered through a new process to become operational in October. The focus is on improvement to the ex-gratia support provided by Welsh Government and to take into account of the views of those affected to ensure that, going forward, this support is used to best effect and our arrangements are transparent and equitable. Therefore, there will be a single streamlined scheme for Wales to be administered through the NHS Wales Shared Services Partnership. The working title for the new scheme is Wales Infected Blood Support Service (WIBSS). It is planned that those identified by the existing UK schemes as Wales s beneficiaries will transfer to our new scheme that will be operational from October Enhanced Partnership Committee Page 3 of 10

4 regular payments (annual, quarterly or monthly) under the new scheme will be backdated to April In October 2016 the Welsh Government wrote to all scheme beneficiaries to invite them to complete a survey and/or to attend workshops held in North and South Wales. A summary of the surveys/workshops and the outcomes are highlighted in Appendix 1. BENEFICIARIES There are currently 197 beneficiaries in this scheme that will be supported within Wales. The breakdown of their health status is identified below, FINANCES Number Hepatitis C Stage Hepatitis C Stage 2 30 HIV 3 HIV & Hepatitis C Stage 1 16 HIV & Hepatitis C Stage 2 1 Total Beneficiaries 197 The details of the new financial support arrangements are set out at Appendix 2. There is a basic cost of supporting the 197 beneficiaries. This does not include, The discretionary funding. The level has not yet been released by Welsh Government. Regular bereavement payments: for three years following death, payment to spouses/partners of scheme registered will be at 75% of the annual entitlement. A one-off payment equivalent to three years entitlement at the annual rate will be paid to spouses/partners of scheme registered beneficiaries for deaths in earlier years. Set-up costs. To be evaluated and agreed with Welsh Government. Scheme running costs, both within NWSSP and Velindre Cancer Centre. All costs for the new service will be met by Welsh Government with regular review and flex as the service adapts to need. NEXT STEPS Arrangements will need to be put in place in the next 5 months to support operational delivery, with the scheme planned to go live from 1 st October Partnership Committee Page 4 of 10

5 NWSSP will manage beneficiary data, the funding package and provide a payment service for the ex gratia payments. Velindre Cancer Centre will develop an individual holistic needs assessment followed by bespoke advice and support. NWSSP have asked the Velindre Cancer Service for service models to be assessed and costed. The new scheme may include support to access ex gratia payments, benefit advice, support to access health services, and a range of other support. Following the announcement from the Cabinet Secretary, NWSSP will establish a Project Group including colleagues from Velindre Cancer Centre, Welsh Blood Service and Welsh Government. This group will meet for the first time during May. The new service will sit under the Legal Services / Welsh Risk Pool division of NWSSP. A project manager from the NWSSP Project Support Office has been appointed to co-ordinate the establishment of this Service. Specific areas of work that need to be addressed include, Development of scheme management including the development of a PID Identification of set-up costs and ongoing Service support infrastructure requirements A review of the Velindre NHS Trust Establishment Order Consent from Beneficiaries seeking data transfer from Alliance House to WIBSS and management of data transfer Link with HMRC & DWP re: Exemption Regulations Develop new rules for beneficiaries re: application process, bereavement system, discretionary support criteria Clinical appeals criteria and process Beneficiaries engagement & communications For further context the following information is set out in the appendix The current schemes providing ex-gratia financial support and how they are funded (Appendix 3) RECOMMENDATIONS The Committee is asked to NOTE the contents of this report and the current stage of development of the new WIBSS. Partnership Committee Page 5 of 10

6 Appendix 1 WELSH GOVERNMENT CONSULTATION In October 2016 the Welsh Government wrote to all scheme beneficiaries supported to invite them to complete a survey and/or to attend workshops held in North and South Wales. This co-productive process finished on 20 th January 2016 and proved invaluable in helping the Welsh Government gain a deeper understanding of the impact of the tragedy on people s lives and those of their families in many cases. Three principal messages influenced the decision to establish a dedicated scheme for Wales. 1. There is a need to provide broader assistance over and above financial support. Affected individuals can experience difficulties accessing healthcare services, home or travel insurance, other financial benefits, or suitable public services. The new scheme will include a holistic support service for every affected individual - to be provided face to face, on-line and by telephone. This is intended to significantly improve our beneficiaries sense of security, quality of life and care and, ensure they are treated with the dignity they have a right to expect. 2. To address the concerns raised about access to discretionary funding. This has not been straightforward or equitable in that many never apply at all for these funds and those who do apply can find it burdensome and undignified to fill in forms to seek often modest amounts of money. As equity is a key value for the new scheme, it has been decided increase all regular payments to include an amount towards additional expenses such as increased winter fuels; in relation to treatment (travel/overnight accommodation); and insurance (personal/travel). The intention is to remove the need for people to apply for this support although a discretionary fund will be retained. 3. To do more to support those who have been bereaved, especially during the early years when distress and financial difficulty may be greatest. The one-off payment is not sufficient to help people adjust when regular payments cease. To address this, the Welsh Government has announced that spouses, civil partners or partners will receive 75% of the regular payments for three years after bereavement. For the newly bereaved, payments will reflect the regular payment rate at the time of death. For those bereaved in earlier years, the rate will be applied and one payment made in full. Partnership Committee Page 6 of 10

7 Partnership Committee Page 7 of 10

8 Appendix 2 The payments for the new scheme ( ) compared with the payments under the interim arrangements ( ) are set out below. Regular payments: annual entitlement for those with hepatitis C at Stage 1. Regular payments: annual entitlement for those with hepatitis C at Stage ,500 4,500 15,500 17,500 Regular payment: annual entitlement for those with HIV. 15,500 17,500 Regular payments: annual entitlement for those with HIV and hepatitis C Stage 1. Regular payments: annual entitlement for those with HIV and hepatitis C Stage 2. New registrants: one off lump sum payment for those with hepatitis C Stage 1. New registrants: one off lump sum payment for those who progress to hepatitis C Stage 2. New registrants: one-off lump sum payment for those with HIV. Bereavement payments: one-off lump sum for scheme registered spouses/partners of scheme registered beneficiaries. 18,500 21,500 30,500 34,500 20,000 20,000 50,000 50,000 20,000 20,000 10,000 10,000 Regular bereavement payments: for three years following death, payment to spouses/partners of scheme registered will be at 75% of the annual entitlement. A one-off payment equivalent to three years entitlement at the annual rate will be paid to spouses/partners of scheme registered beneficiaries for deaths in earlier years. Partnership Committee Page 8 of 10

9 Appendix 3 The current schemes providing ex-gratia financial support and how they are funded are set out below: MacFarlane Trust (charity) HIV Has been funded by the Department of Health (DH) since 1988 to provide discretionary support through means-tested regular payments to beneficiaries and widows; annual fixed payments to dependent children, a means-tested winter payment; and individual grant payments to: UK individuals with bleeding disorders who contracted HIV (including those co-infected with HCV) as a result of treatment with plasma derived blood products; any UK person who was in turn inadvertently infected; and their families. Eileen Trust (charity) Has been funded by DH since 1993 to provide discretionary support through means-tested regular payments, one-off grants and a fixed rate winter payment to: UK individuals infected; and their families MFET Ltd (a company limited by guarantee) Has been funded by DH since 2010 to provide non-discretionary payments of 14,574 ( and CPI lifted) to: UK individuals; any person who was in turn inadvertently infected; their families. Also funded by DH to reimburse England individuals the cost of an annual prescription pre-payment certificate. Skipton Fund (a company limited by guarantee) HCV Has been funded by the four UK health departments since 2004 to provide non-discretionary support to individuals: a single lump sum of 20,000 (chronic infection); and an additional non-discretionary lump sum of 50,000 and an annual payment of 14,749 ( CPI uplifted) for those with cirrhosis, primary liver cancer, B-cell non-hodgkin s Lymphoma or who have undergone a liver transplant or are on the waiting list for one. Also funded by DH to reimburse England individuals the cost of an annual prescription pre-payment certificate. Caxton Foundation (charity) Has been funded by the four UK health departments since 2011 to provide discretionary support through means tested grants and fixed winter payments to: Partnership Committee Page 9 of 10

10 individuals infected; their widows and dependents. Partnership Committee Page 10 of 10