Response to the Contaminated Blood Announcement and Consultation
The Department of Health (DH) today published a written ministerial statement announcing some changes to the support scheme for people affected by contaminated blood and launching a new consultation on the Special Category Mechanism and the discretionary support scheme.
The consultation will run for six weeks, until the 17th April. While we have significant concerns with these changes, The Haemophilia Society is glad that there is more clarity and will respond to the consultation in detail in due course.
The DH has further confirmed that they will continue to fund the existing scheme administrators from April 1st 2017 onwards until the new scheme administrator is able to take over responsibility.
The Government announced that they were no longer going ahead with a public tender for a new scheme administrator to take over from the existing five trusts. Instead, later this year the NHS Business Services Authority will take over providing all financial and non-financial support.
The Haemophilia Society is clear that it is vital that the NHS Business Services Authority has appropriately trained staff who can understand the complex needs and history of beneficiaries and deal with all correspondence and applications for support in a sympathetic way.
The NHS Business Services Authority must ensure that beneficiaries are represented in relation to key decisions and in its oversight.
The DH is also expected to be setting up mechanisms for appealing decisions of the scheme administrator. We believe it must be ensured that these are independent of both the scheme administrator and the DH.
Included within the announcement are some changes to the previously confirmed annual payment amounts from April 2018 onwards. For example, co-infected stage 1 beneficiaries were expecting the non-discretionary part of their support to increase from £18,500 to £22,500 a year (adjusted for inflation). Instead the consultation states that “we no longer propose to introduce the fixed increases in annual payments from 2018/19 which were proposed in July 2016”.
The April 2018 increase would have offset likely reductions in their discretionary payments and helped to achieve the DH aim that “no-one who currently receives an annual payment will be worse off than they are now”. Instead The Haemophilia Society are not confident that this will be achieved as regular payments from Caxton and Macfarlane do not seem to be taken into account for this calculation.
We strongly oppose the changes to reduce the annual payments planned for beneficiaries from April 2018. The Haemophilia Society’s position is that as a minimum primary beneficiaries should receive non-discretionary support at a level equivalent to the new scheme introduced in Scotland.
The consultation lacks detail on how the new discretionary support will be assessed and awarded. It also makes no guarantees on the amount of funding available and warns that if more people than expected apply for and qualify for the SCM “there is likely to be less discretionary funding available”.
In our view, discretionary support must take into account the needs of beneficiaries and be something that can be relied on rather than begged for. It must also be available to all immediate family members including partners, parents and dependent children.
Previous announcements from DH had expected the discretionary support scheme to be ‘enhanced’ with an increased budget from April 2018 however this appears to no longer be the case.
The announcement does not include any changes to the policy for bereaved partners. We are concerned that they will find it harder to get ongoing support from the scheme and instead receive what the consultation describes as “Means tested grants for dealing with unexpected/immediate problems and acute events or health problems which are difficult or impossible to plan for and where support is not available elsewhere”.
Our expectation is that they are also excluded from the commitment that “no-one who currently receives an annual payment will be worse off than they are now” as they do not receive what the Government class as ‘annual payments’ instead relying on support from the discretionary charities, the Macfarlane Trust and Caxton Foundation. Instead the DH should confirm that this commitment extends to all people relying on ‘Means tested income top-ups’.
We also strongly oppose the new policy for a £10,000 lump sum as it excludes some people who currently rely on the Macfarlane Trust and Caxton Foundation for support if they are not able show co-habitation at time of their partner’s death. Furthermore, the amount of support is not reflective of the impact on their life of supporting and caring for their infected partner.
Special Category Mechanism
The consultation includes much detail on the Special Category Mechanism (SCM) and the application process.
The proposals are that if people have experienced a long-term adverse impact on their daily lives as a result of their Hepatitis C infection or its treatment they would qualify for annual payments at the same level as people classed as Stage 2 Hepatitis C.
We welcome that the process will properly consider fatigue and mental health issues caused by an individual’s Hepatitis C. In principle we also welcome the wider proposals but will respond in more detail to the process and appeals mechanism as part of the consultation.
For some individuals it will be difficult to isolate which of their health conditions are causing the impact on their daily lives and for this reason The Haemophilia Society strongly encourage the DH to ensure that people co-infected with Hep C and HIV automatically qualify under the SCM.
Wider concerns with the new support scheme are available in the November 2016 Contaminated Blood backbench debate briefing and in our January 2017 update on Developments in Contaminated Blood Support.
For more information please contact Jeff Courtney on Jeff@haemophilia.org.uk or call the Haemophilia Society on 0207 939 0780.