Update on the Contaminated Blood Support Schemes

Written by Aaron Dennis, September 21, 2017

Updated 19th October

The Haemophilia Society met with the DH and the administrators of the Contaminated Blood Support Schemes on Tuesday 19th September as part of the Infected Blood Reference Group. We have since received the results of the DH consultation on the support schemes in England and have had further engagement with the new scheme administrator. We have provided an update below on changes to the support schemes as a result of the recent consultation and the process of handover to the new scheme administrators.

Transition to the new scheme administrator

All beneficiaries of the Macfarlane trust, the Skipton fund, MFET, the Eileen trust and the Caxton Foundation (collectively the Alliance House organisations) will have received a letter from each trust they are registered with on or around the 5th September. This letter announced that from the 1st November 2017 the five Alliance House organisations will pass responsibility for administering the contaminated blood support scheme, as it applies to people infected or registered in England, to the NHS Business Services Authority (BSA).

Beneficiaries were asked to consent to the transfer of their data to BSA, replying by the 20th September, so that their support payments will continue uninterrupted during the transition. Beneficiaries must respond separately to each letter they received. If you have not already responded please do as soon as possible to ensure you continue to receive your payments.

Beneficiaries under the Welsh or Northern Ireland schemes will have been asked for similar consent to pass data to the other new scheme administrators.

If you have any questions about what data will be transferred please contact the relevant Alliance House organisation on the details below:

The Macfarlane Trust, Eileen Trust and MFET – 0207 233 0057

The Skipton Fund – 0207 808 1160

The Caxton Foundation – 0207 233 0057

It is expected that all data for which the Alliance House organisations have received consent to transfer will be passed to the BSA in early October. Following this the BSA will be able to write to beneficiaries to provide them with information on how to contact the BSA and confirmation that they are registered with them. After you receive this letter you will be able to contact the BSA for information on your payments and other support.

Between now and the 1st November it is expected that any services and support currently provided by the Alliance House organisations will continue uninterrupted. If you start an application to join the scheme, apply for Skipton Stage 2, apply for a grant, appeal a decision or any other request that is not completed prior to the handover it will be be completed by the current scheme administrator.

From the 1st November all payments will be made by the BSA. If you don’t receive an expected payment after this date, please contact BSA straight away and they should be able to rectify it within 1 working day.

Discretionary Payments

Discretionary payments for primary beneficiaries and family members (including grants, means-tested top-ups and other regular payments) will be provided by the BSA. They have no plans to make any changes to the payments people are receiving until after the end of the financial year in April 2018.

If beneficiaries are currently in receipt of ongoing discretionary payments these will be continued by the BSA at the current amounts until the end of the financial year in April 2018.

We expect the BSA to be transparent and publish their new processes and procedures for providing discretionary support once they are decided.

The Special Category Mechanism

The Special Category Mechanism will be a paper-based application process where people whose Hep C is classed as Stage 1 can apply for higher annual payments at level equivalent to people with advanced liver disease such as cirrhosis, classed as Stage 2.

The application (a draft of the form is available as Annex A in this report) will consider whether the beneficiary’s infection or its treatment has caused a substantial long-term adverse impact on their daily lives backed by supporting evidence from their Hepatologist or a clinical nurse specialist. While it is not their preference, the DH accept that for some people their GP will be best placed to fill in the SCM form.

The DH estimate that 50-70% of people currently classed as Stage 1 will be entitled to the higher payments.

The BSA will publish the Special Category Mechanism application form shortly and will take applications from the 1st November. They expect to have made the decisions on the first round of applications (all those received within 8 weeks of the 1st November) by early 2018. There will be a process for appeal and if unsuccessful people can reapply after 6 months if their situation has changed.

Engagement with Beneficiaries

The BSA is keen to engage with beneficiaries to ensure the handover goes as smoothly as possible and that their views are reflected in how the support schemes will be administered. It is hoped that a series of forums will be able to be set up and meet in November. We have asked that in time these take place in different parts of the country and with beneficiaries from a range of different circumstances.

The BSA will be basing its contaminated blood support team in London and some of the existing staff of the Alliance House organisations will be moving to join the BSA.

Changes in April 2018

Non-discretionary annual payments will infected beneficiaries will rise as per the table below:

Annual Payments 2017/18 2018/19
Hep C Stage 1 £3,535 £4,500
Hep C Stage 1 plus SCM £15,655 £18,500
Hep C Stage 2 £15,655 £18,500
HIV £15,655 £18,500
HIV/Hep C Stage 1 £18,685 £22,500
HIV/Hep C Stage 1 plus SCM £30,805 £36,500
HIV/Hep C Stage 2 £30,805 £36,500

It is as yet unclear how discretionary payments for individuals will be impacted from April 2018.

We hope by this stage that those with long-term adverse impacts from their Hep C infection will be receiving higher payments through the special category mechanism. However, people receiving regular discretionary payments, such as bereaved partners and people living with HIV, may have reductions in their overall support payments from this date.

The Society continues to advocate for an improved support scheme that ensures no one is worse off, all beneficiaries are able to live comfortably and anomalies in the scheme are fixed.

About the BSA

The NHS Business Services Authority (NHSBSA) is a Special Health Authority and an Arm’s Length Body of the Department of Health. They provide central services to NHS organisations, NHS contractors, patients and the public.

Their services include processing prescription items for pharmacists, managing the NHS Pension Scheme, administering the European Health Insurance Card (EHIC), making payments to dentists for NHS work, and managing NHS Student and Social Work Bursaries Schemes.

Scotland, Wales and Northern Ireland

In Scotland the contaminated blood support scheme has already transferred to NHS National Services Scotland. In Wales it is moving to Velindre NHS Trust and in Northern Ireland it will be provided by the HSC Business Services Organisation.

The Northern Irish support scheme can be contacted on 02895 363 817 or [email protected].