Hepatitis C care 'fails patients' in the UK
The NHS approach to hepatitis C needs overhauling, MPs and doctors have said.
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 acceptable"
Professor William 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.
Brian 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.
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 William Rosenberg, professor of hepatology at the University of Southampton, said: "We are lagging behind many countries and that in not acceptable."
Charles 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'
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?
Maria Miller, 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 case"
Maria Miller, 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." Maria Miller 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 Miller 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."