Haemophiliac care 'under threat'

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Diana Johnson MP argues against haemophiliac care being under threat from the Health and Care Social Bill.

There are two key current issues around haemophiliac care. Firstly, the ongoing treatment for haemophilia and, secondly, the care, support and treatment offered to those who have contracted viruses such as HIV and hepatitis C through NHS treatments for haemophilia.

These issues have been highlighted over many years by the Haemophilia Society and campaign groups such as ‘Tainted Blood’ and Manor House.

There has been much progress in treatment for haemophilia over the past decade. However, like much else this is now under threat from the Health and Social Care Bill. The Department of Health has taken a leading role in haemophilia care, because of the contaminated blood issue. However, it is unclear what will happen after the coalition’s major NHS reorganisation. There is concern that with financial pressure in the NHS, standards of care could be levelled down.

Also Health Service Guidance 93 (30) on haemophilia was published nearly 20 years ago and no longer reflects best practice. An updating of the guidance seems timely.

In recent months, I have been raising the issue of care offered to victims of the NHS ‘contaminated blood scandal’, as it has come to be known over the past 30 years.

My Hull North constituent Glenn Wilkinson has campaigned tirelessly for proper support for those who have received contaminated blood products, either as part of treatment as a haemophiliac or individuals who have received contaminated blood products in other medical treatments, such as blood transfusions in childbirth. This week Glenn, along with other campaigners, has established a new pressure group, the Contaminated Blood Campaign.

The treatment of people who contracted hepatitis C from NHS-administered blood products has been particularly unfair, and many of these people have already died.

There has been a long fight for proper compensation for those infected. The McFarlane Trust was set up in 1988 for people infected with HIV and in 2004, the previous Labour government established the Skipton Fund.

In 2010 the incoming government undertook a review of the support available to individuals. There was some progress, but problems remain. The government has introduced two-stage payments for hepatitis C, but the criteria for determining the second stage is fraught with difficulties and only about 20 per cent of people are eligible for this assistance.

Now, hepatitis C sufferers will also be penalised by aspects of the government’s welfare reforms. Many people living with hepatitis C have been placed in the ‘work-related activity group’ of the new Employment and Support Allowance (ESA), rather than the ‘support group’ category, where benefits will continue.

This has two consequences. Firstly, it means that sufferers will have to have annual assessments. It also means that after 12 months their benefits will be means-tested. This is effectively penalising a person for prudent behaviour and hard work when they were well enough to be in employment. People who are diagnosed with hepatitis C know that they are unlikely to be able to continue working until a normal retirement age.

Further, people are currently forced to wait up to 11 months for a tribunal appeal. It is to be noted that appeals for hepatitis C sufferers have a particularly high success rate. Automatically moving contaminated blood product victims into the ‘support group’ would save the patients stress, and the government money.

It is important that the treatment of haemophiliacs and others who have been infected by contaminated blood products continues to be discussed and debated in Parliament, and that further progress is made in developing high standards of care, and fair support to all individuals affected.

Diana Johnson has been MP for Kingston upon Hull North since 2010 and was part of the social services and health scrutiny panel 2000-02.