Raising awareness
We are outraged about the lack of awareness of hepatitis C that exists both within the medical profession and the general population.
There are between 250,000 and 500,000 people infected with hepatitis C today in the UK, of which only around 90,000 have been positively diagnosed. This means that only around a quarter of people who are infected are aware that they are living with the disease. This figure is 50% in France and 90% in Australia.
We are asking the English, Scottish, Welsh and Northern Irish governments to start large scale, multi-media mass public awareness campaigns so that people understand the virus, and will get tested if they think that they are at risk from infection.
The Hepatitis C Trust has launched a brand new awareness and prevention campaign called What Not To Share to encourage people to get tested and stay safe. Click at the link at the right of the page to find out more.
Improving investment
Every person infected with hepatitis C deserves prompt, high quality care and support from their local health care services, in accordance with the Hepatitis C Action Plan and NICE guidance. NICE guidance states that all patients with hepatitis C are entitled to treatment.
Unfortunately in today’s NHS this isn't always the case and patients are too often faced with health professionals who are unaware of even the basics of hepatitis C. This results in long delays in diagnosis, serious complications and early deaths.
If patients are referred to a specialist too many end up on long waiting lists for treatment, sometimes of a year or even longer. The may be because clinics are over-subscribed or because PCTs have failed to properly plan their hepatitis C budgets.
There is a professional consensus that early diagnosis and treatment of hepatitis C saves lives and improves quality of life. It is also much cheaper to treat in its early stages and prevents further infections.
Investment is needed urgently to identify and treat infected people to save the National Health Service money in the long run, and to save lives now.
Action from local health services
The Department of Health Hepatitis C Action Plan for England was published in 2004, but a survey by the All Party Parliamentary Hepatology Group in 2006 found that only 8% of Primary Care Trusts (PCTs) were implementing the Action Plan effectively, 56% were taking some action, and a worrying 36% were doing nothing or virtually nothing.
The APPHG repeated the audit in 2008 and found that still, only one third of PCTs have implemented the Action Plan and 15% of PCTs are doing nothing or virtually nothing.
Worryingly, the audit showed that over half of PCTs have delayed treatment by over 3 months, or do not monitor delays in treatment. Results were widely variable across the country meaning that hepatitis C care remains a matter of chance, depending on where a patient lives. You can read the 2006 audit report, ‘A matter of chance: an audit of hepatitis C care in England’, and the 2008 audit report, 'Location, Location, Location', here.
The Action Plan did not set targets or timetables for the PCTs, or any penalties for failing to implement the recommendations. We are lobbying PCTs to implement the Action Plan, and are asking the government to introduce timetables, targets and monitoring to make sure that services are improved. This will enable a benchmark by which PCTs and Hospital Trusts can be measured.
The Welsh Assembly are in the process of drafting and approving their Action Plan. It should be published for consultation in the autumn 2008. We are working closely with Welsh Ministers, hoping to ensure that timetables, targets, monitoring and sufficient funding are embedded in the Action Plan so hepatitis C patients in Wales will get first class care.
The Scottish Parliament are tackling hepatitis C in three phases. On World Hepatitis Day 2008, May 19th, they launched phase II of their Action Plan which invests £43 million into hepatitis C services over the next three years.
The Northern Ireland Assembly will shortly be considering their response to the crisis, and The Hepatitis C Trust will be on hand to encourage them to produce an effective Action Plan.
The All Party Parliamentary Hepatology Group
The All Party Parliamentary Hepatology group (APPHG) meets regularly to discuss issues of hepatology, including hepatitis C. They raise matters of concern to government and other policy makers. David Amess MP and Bob Laxton MP are joint chairs of the group and The Hepatitis C Trust provides the secretariat.
The APPHG have published 4 major reports into hepatitis C:
The Hepatitis C Scandal (March 2005)
A Matter of Chance: An Audit of Hepatitis C Healthcare in England (May 2006)
Location, Location, Location: An Audit of Hepatitis C Healthcare in England (February 2008)
Divided Nations: Tackling the hepatitis C challenge across the UK (February 2009)
All reports led the APPHG to the conclusion that the government response to the hepatitis C crisis has been deeply disappointing, and much more needs to be done. The reports can be read at the links to the right of the page.
Most recently the APPHG published a report looking into effective awareness raising health campaigns, following the insufficient government ‘FaCe It’ campaign. The report follows case studies from Breast Cancer UK, the British Heart Foundation, the 1987 ‘Don’t die of ignorance’ HIV campaign and a recent successful awareness raising hepatitis C campaign in France. Take a look at the links at the right of the page.
Parliamentary Debates and Questions
Here you will find summaries and links to recent Parliamentary debates and Parliamentary Questions that highlight the issue of hepatitis C.
Debates
11th June 2009 – Madeleine Moon MP calls for greater regulation of tattooing and skin piercing citing health and hygiene concerns. She acknowledges that this is a route of transmission for hepatitis C. Read more here
1st July 2009 – Jenny Willott MP calls for further action following the publication of the Archer Inquiry into contaminated blood products, and in particular asking for further compensation for patients. Read more here
21st May 2008: Dr Brian Iddon MP asked the government to do more to tackle the rising rate of liver disease. Read more here.
21st May 2008: Shona Robison MSP explained to the Scottish Parliament what the new Action Plan will mean for people with hepatitis C in Scotland. Read more here.
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th July 2007: David Amess MP, Chair of the All Party Parliamentary Hepatology Group told the government that they have failed to prioritise the issue of hepatitis C, and the sum of £2.5 million that has been spent on the awareness campaign is simply not enough.
Read more here. 22nd February 2007: Andrew Murrison MP criticised the government for their slowness in responding to the hepatitis C crisis, and accused PCTs of allowing the Action Plan to be ‘left on the shelf gathering dust’. Read more here.
5th December 2006: Andrew Lansley MP criticised the Health Minister for failing to diagnose the estimated minimum 200,000 people living unaware with hepatitis C. Read more here.
Parliamentary questions and debates
9.09.09 Sharing of notes and straws by cocaine users
21.07.09 Number of people with hep c in Scotland undiagnosed (Question for Scottish Parliament)
16.07.09 Costs of treating hep C and HIV
16.05.09 support for patients undergoing treatment for hep C (Question for Scottish Parliament)
04.11.09 Estimates of hep C prevalence
22.07.08: Hepatitis C in prisons
03.07.08: Cost of the Skipton Fund
01.07.08: Funding for epidemiology for hep C, hep B and HIV
17.06.08: Liver disease
17.06.08: Government awareness campaign
16.06.08:
House of Lords debate on the Health and Social Care Bill 12.06.08: Government support of World Hepatitis Day 2008
06.05.08: PCT Audit of hepatitis C services, Location Location Location
03.04.08: Lords debate on screening
03.04.08: Lords debate on drug strategy
20.03.08: FaCe It awareness campaign
11.03.08: Claims for transfusing transmitted infection
07.03.08: Diagnosis of hepatitis C in the last 10 years
06.02.08: Funding for FaCe It campaign
08.10.07: Annual cost of drug treatments for hepatitis C 2005-6
25.07.07: Costs of the FaCe it campaign
12.06.07: Hepatitis C in prisons
04.06.07: Screening for hepatitis C
08.05.07: Aims and costs of the FaCe It campaign
16.04.07: Number of reported cases of hepatitis C each year since 1997
29.03.07: Research
07.03.07: Specialist nurses
16.02.07: Setting targets for diagnosis of hepatitis C
19.01.07: Visitors to the government’s hepatitis C information website
You can look up more parliamentary questions and debates that mention hepatitis C by searching ‘hepatitis C’ in the website, 'They Work For You' (link at the right of the page).
If your MP has not brought up the issue of hepatitis C within Parliament, why not write to them to ask them to start?
