To: The Department of Health

Infected blood consultation

The Department of Health has recently published its consultation on the long-awaited proposed reforms to the support available for people affected by HIV and/or hepatitis C through treatment with NHS-supplied blood or blood products.

Despite the headline announcement of additional funding of £125 million, The Haemophilia Society has a number of serious concerns about these proposals. Far from delivering the vital reforms needed by those affected, the majority of people currently receiving financial support will be worse off under the new scheme.

It is imperative that the full impact of these reforms is understood before any changes to the scheme are finalised, to prevent the most disadvantaged people losing out on the support they rely on. Therefore, The Haemophilia Society and its members believe that the consultation should be withdrawn and a further period of consultation with key interested partners (including The Haemophilia Society) should be undertaken, before any further proposals for reform are made.

Why is this important?

The Department of Health’s announcement of a consultation was long overdue as the current systems of payments are confusing and complex and in need of urgent reform to ensure people who are affected can access the support they need.

Despite the headline announcement of additional funding of £125 million, The Haemophilia Society has a number of serious concerns about these proposals. Far from delivering the vital reforms needed by those affected, the majority of people currently receiving financial support will be worse off under the new scheme.

Our key concerns are that:

• The majority of existing recipients will receive lower payments under the new scheme. The reforms propose removing discretionary payments, such as winter fuel allowance, child supplements and low income top ups meaning that many people will lose out, potentially by thousands of pounds a year
• Individual assessments could reduce financial security and risk unfairly disadvantaging some groups. Annual payments for people with Stage 1 hepatitis C are welcomed, however they will be subject to regular individual assessments, which could result in fluctuating payments and reduced financial certainty for recipients. Assessments will also only take clinical factors into account (not, for example, loss of education or employment)
• Annual benefits for people with HIV and advanced hepatitis C will decrease in value over time. Although these annual payments will increase from £14,749 to £15,000, they will no longer be linked to the Consumer Price Index
• There is inadequate provision for the ‘affected’ community, the widows, partners, carers and dependents of those infected. The proposals make no provision for widows/widowers whose partners have already died as a result of being infected with hepatitis C and new widows could only get help for one year. Support for children will also be removed
• Beneficiaries in England will be worse off than those in Scotland. If more generous proposals are accepted by the Scottish Government, people in England will receive much lower incomes under the revised scheme than those in Scotland
• Under NICE guidelines everyone with hepatitis C will be eligible for treatment with the new generation of drugs from the end of February 2016. Allocating funding for treatment at the detriment of other financial support when the NHS could treat this community does not make sense

For more information, please contact The Haemophilia Society at: info@haemophilia.org.uk


Reasons for signing

  • My Dad passed away as a result of the infected blood.
  • My father passed away as a result of the infected blood.
  • Father in law passed away as a result of infected blood.

Updates

2016-02-07 10:51:52 +0000

1,000 signatures reached

2016-02-05 18:06:37 +0000

500 signatures reached

2016-02-05 12:27:54 +0000

100 signatures reached

2016-02-05 11:53:51 +0000

50 signatures reached

2016-02-05 11:41:14 +0000

25 signatures reached

2016-02-05 11:32:59 +0000

10 signatures reached