Hepatitis C care 'fails patients' in the UK

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Hepatitis C care 'fails patients' in the UK

The NHS approach to hepatitis C needs overhauling, MPs and doctors

have said.

bbc. News

May 23, 2006

A report by the All-Party Parliamentary Hepatology Group said care

was a " postcode lottery " with many trusts not following official

guidelines.

And a second report by top doctors said the UK was lagging behind its

European neighbours which had set up specialist diagnosis and

treatment centres

Campaigners said the failures were costing lives, but the government

said services were improving.

The hepatitis C virus, if untreated, can cause cirrhosis, liver

failure or liver cancer.

“We are lagging behind many countries and that is not acceptableâ€

Professor Rosenberg, professor of hepatology

'I had to go abroad' see below…..

Most people who contract the infection can be successfully treated,

but - as the virus often does not produce early symptoms- it can go

undetected, often for years.

The virus is spread through contact with infected blood. Most people

contract it through sharing needles to inject drugs.

The All-Party Parliamentary Hepatology Group found that 92% of 191

primary care trusts had failed to fully implement a 2004 Department

of Health action plan to tackle the disease.

And nearly half of the 107 hospitals quizzed said there were

significant delays of up to a year for patients waiting for treatment.

Iddon, a Labour member of the cross party group, said the

infection was a " hidden timebomb " .

Campaigners believe about 400,000 people are infected but unaware of

it - although the government says its half this number. By the end of

2005, 54,000 people had been diagnosed.

Doctors

The report by leading doctors, which was published to coincide with

the MPs' study, said the UK had not responded as well as its European

neighbours and management of the virus in the UK was " both

unstructured and under-funded " .

The report details seven recommendations for the government,

including developing a detailed strategy for managing the virus;

appointing somebody to oversee it; raising awareness and improving

testing.

It also called for specialist centres to be set up as they have been

in France, Germany and Italy to provide diagnosis and treatment.

Report author Professor Rosenberg, professor of hepatology at

the University of Southampton, said: " We are lagging behind many

countries and that in not acceptable. "

Core, chief executive of the Hepatitis C Trust, which

commissioned the report by doctors, said lives were being lost

because of the failings.

" If we do not seize this opportunity we will look back and know that

by our inaction we let it happen. "

A Department of Health spokeswoman said: " We recognise the importance

of hepatitis C as a public health issue. "

And she said early indications were that awareness campaigns and the

national framework were having an impact as more people were being

diagnosed.

But she added: " The results of the survey may serve as a useful focus

for discussion by local NHS organisations. "

'I had to go abroad to get diagnosed'

bbc

May 23, 2006

Doctors and MPs say the NHS is failing hepatitis C patients.

What is it like to try to struggle to access the services?

, originally from the Czech Republic, came to the UK

believing the NHS to be the envy of the world.

She moved with her half-British husband to set up home in the mid

1990s.

Within a few years she started developing all sort of problems.

" I was getting very tired, I had pain behind my eyes and sore

joints, " said the 53-year-old mother-of-three from Portsmouth.

" I also had irritable bowel syndrome. I kept going to the doctors,

but no-one could put their finger on it.

“I came back to the UK thinking at least I would be able to get

things sorted, but that didn't turn out to be the caseâ€

, hepatitis C

Hepatitis C patients 'failed'

" Eventually I got terrible back pain, and this time the doctors found

something. "

In 2004 doctors identified a cyst on her liver, but still the cause

was not established.

" I went on to the Internet to see if I could find any clues, and

found it could be caused by an infection.

" I decided to go back to the Czech Republic to see if doctors there

could help. "

Almost immediately she was diagnosed with hepatitis C, the blood-

borne virus which can cause serious liver damage.

But, as she was now living in the UK, she would have had to pay for

the drug treatment as well as spending time away from her children.

" I came back to the UK thinking at least I would be able to get

things sorted, but that didn't turn out to be the case. "

said.

To get referred for treatment, doctors needed to carry out a biopsy.

More than a year went by while she waited for an appointment, during

which she campaigned for treatment - even complaining to her MP.

She was then referred for treatment at a hospital in Southampton.

But, still worried about the damage the infection was doing, she

decided at the end of 2005 to go to France to have further diagnostic

blood tests and a non-invasive fibroscan of the liver, which is used

there as an alternative to liver biopsy.

When she returned home, Southampton agreed to treat her without the

need for a biopsy.

But Mrs is still upset. " I am really quite angry. It has been

such a struggle to get where I am now. It shouldn't be like this. "