Blood transfusion victim caught in red tape wrangle

A liver transplant patient and hepatitis C victim who lives in Yell has fallen foul of NHS red tape that leaves him tangled between differing health systems north and south of the border.

Bob Birchall, who is 58, caught hepatitis C from a blood transfusion in England in 1975.

His illness was only diagnosed in 2008 – 26 years after he moved to Shetland where he has lived for most of his life.

Because he caught the disease in England, NHS Scotland says that he is not eligible for Scottish support payments, which are to be nearly doubled thanks to an independent review of the system that will see an extra £20m, over three years, go to sufferers north of the border.

Mr Birchall will continue to receive payments funded by Westminster, which are set to be cut drastically. All payments are presently administered by the Caxton Foundation and Skipton Fund that is funded by the governments.

After developing Stage 2 hepatitis C Mr Birchall received a life-saving liver transplant in Edinburgh last year, but the prognosis is that he may have to have another transplant in five years, once the disease has damaged his new liver beyond function, or face “the coffin”.

Following the transplant he was faced with visits to Edinburgh every week for six weeks and still has to visit the transplant hospital on a fortnightly basis.

Hepatic encephalopathy is one of the effects of severe liver disease like hepatitis C and its symptoms are “a bit like Alzheimer’s,” said Mr Birchall.

“I have good days and bad days and I do not know how I am going to feel day to day. Sometimes I cannot eat and cannot sleep. I had a motor accident and have not driven since. That’s a real drawback, particularly in a place like Shetland.”

The condition requires him to be on painkillers and heavy drugs, which are expensive for the
health service.

He said that while he is extremely grateful to the donor’s family and transplant staff for effectively saving his life, ideally he would like the English system of payments to be brought in line with Scotland; alternatively, he should be brought under the wing of the Scottish system as that is where the diagnosis was made.

Mr Birchall said: “I was just a youngster at the time of the accident and was pretty badly smashed up – I broke my legs and damaged my spine.

“I am not a greedy person and am quite content with my lot really, but this is going to get worse and worse. It is not a social security benefit, it is totally separate from the Department of Work and Pensions. I am in no way a dole scrounger and like everyone else, I would work if could.

“I have done nothing wrong – this is an injury that has been done to me – and I am left in a position where I cannot work and will have no pension to speak of now.” – Bob Birchall

“I have done nothing wrong – this is an injury that has been done to me – and I am left in a position where I cannot work and will have no pension to speak of now.”

Mr Birchall remains philosophical about his condition but worries about the implications of the changes for the welfare of his 62-year-old wife who he says has lost pension entitlements through taking time off to look after him.

According to the NHS around 215,000 people in the UK have hepatitis C. With modern treatments it is often possible to cure the infection and most people with it will have a normal life expectancy, the health service says.

Although the NHS website acknowledges the disease can be caught from contaminated blood, it makes no mention of the scandalous system that led to thousands being infected in the UK (see panel).

Hepatitis C often doesn’t have any noticeable symptoms until the liver has been significantly damaged. This means many people have the infection without realising it. When symptoms do occur, they can be mistaken for another condition.

Symptoms can include:
• Flu-like symptoms such as muscle aches and a high temperature (fever);
• Feeling tired all the time;
• Loss of appetite;
• Abdominal pain;
• Feeling and being sick.

The Westminster government launched a 12-week consultation, on its proposals on 21st January, but what is planned provides little comfort for sufferers.

The changes include:
• An index linked annual payment for hepatitis C stage 2 sufferers (currently £14,749) being scrapped and replaced with a non-index linked annual payment of £15,000 maximum.
• Primary beneficiaries will no longer access a range of support provided by the Caxton Foundation up to £4,000 per annum including regular payments and winter fuel payments and losing access to support for mobility issues, adaptations for property and access for free expert advice.
• The existing five organisations that provide support for HIV and hepatitis C, including the Caxton Foundation, will be scrapped and replaced by a single organisation.

According to the Caxton Foundation, those with stage 2 hepatitis C will be worse off under the new scheme.

The Scottish government could make no official comment on the case because of electoral restrictions, but its official policy is that Scotland is only liable for those people infected in Scotland, and vice-versa for the other nations.

The rationale is that the country/NHS that caused the harm should pay support.

The new scheme contains the following provisions:
• Annual payments for those with HIV and advanced hepatitis C will be increased from £15,000 a year to £27,000 a year, to reflect average earnings;
• Those with both HIV and hepatitis C will have annual payments increased from £30,000 to £37,000 to reflect additional health needs;
• When a recipient dies, their spouse or civil partner will continue to receive 75 per cent of their annual payment;
• A new Support and Assistance Grants scheme will be established in Scotland, to administer and provide more flexible grants to cover additional needs. Scottish government funding for this scheme will be increased from £300,000 to £1 million per year.

Mr Birchall had enlisted the help of Shetland politicians Alistair Carmichael and Tavish Scott who have been “very helpful”. Mr Carmichael last month raised his case in a debate on contaminated blood in the House of Commons and called for closer working across the administrations.

Mr Carmichael asked: “I offer her [Parliamentary Under-Secretary of State for Health Jane Ellison] the example of a constituent who was infected 35 years ago in Staffordshire. Although he has lived in Scotland for all that time, he will get compensation under the scheme devised by the Department of Health in England. Where is the sense in that?”