Select Committee on Health Written Evidence


Memorandum by the Hepatitis C Trust (PS 51)

PATIENT SAFETY

EXECUTIVE SUMMARY:

  1.  Only around 70,000 of the estimated 230,000 people infected with hepatitis C have been diagnosed which represents a serious risk to patient safety. Patients are at risk of remaining undiagnosed until the hepatitis C virus has caused irreparable damage to their liver, often resulting in the need for a liver transplant or premature death. The low diagnosis rates of hepatitis C are largely due to low awareness of the disease and its risk factors and symptoms amongst GPs. For example, a recent survey of 200 GPs revealed that 38% of GPs are unable to read their patients' hepatitis C test results.[289] Further, studies suggest that as many as half of patients are not referred by their GPs to secondary care where they can access treatment that can eradicate the virus[290].

  2.  The NHS should undertake an audit of GP practice of hepatitis C care to identify the extent of and reasons for delays in diagnosis, referral and treatment. This should inform training and best practice guidance for GPs, overseen by PCTs and SHAs. Meanwhile, all PCTs should ensure that hepatitis C case-finding and care are covered in GP protected learning time arrangements. Incentives to encourage diagnosis should be introduced, for example through Quality and Outcomes Framework (QOF) points or Payment by Results.

ABOUT THE HEPATITIS C TRUST:

  3.  The Hepatitis C Trust is the national patient-run charity that provides a range of services offering support, information and representation for people with hepatitis C. The Trust is also committed to raising awareness by working to highlight the advantages of getting tested.[291]

ABOUT HEPATITIS C:

  4.  Hepatitis C is an infection of the liver caused by the hepatitis C virus (HCV). It can lead to potentially fatal liver disease and to liver cancer. Patients can live for many years without experiencing symptoms, and as a consequence, a large number of patients remain undiagnosed. The HPA estimates that 231,000 people aged 15-59 in England and Wales are infected[292] and Health Protection Scotland estimates that around 50,000 people in Scotland are infected, although some experts estimate the number of infected people as much higher—as many as 466,000 in the UK[293]. Only around 70,000 people have been diagnosed in England and Wales and 22,000 in Scotland. There is no vaccine against hepatitis C, but treatment can achieve a cure in over half of patients.

DETAILED RESPONSE TO THE TERMS OF REFERENCE OF THE INQUIRY:

What the risks to patient safety are and to what extent they are avoidable, including:

    —  Role of human error and poor clinical judgement

    —  Systems failures

  5.  Accurate diagnosis of diseases and appropriate referral into specialist services is a key patient safety issue and this is especially relevant to hepatitis C, a virus that is undiagnosed in the majority of patients infected. There are estimated to be at least 231,000 people infected with the virus in England and Wales, but only around 70,000 have been diagnosed. Hepatitis C can be successfully treated and cured in around half of patients, but if not diagnosed and treated the virus can lead to cirrhosis, liver cancer and liver failure.

  6.  The low diagnosis rate of hepatitis C is largely due to low professional awareness of the disease and its risk factors and symptoms amongst GPs. GPs are the front-line interface between medicine and the public and are therefore key to diagnosing hepatitis C patients and initiating them on a care pathway. A recent survey of 200 GPs revealed that 38% of GPs are unable to read their patients' hepatitis C test results and 32% do not actively follow-up patients with a positive hepatitis C diagnosis.[294]

  7.  The low diagnosis rates due to low professional awareness represent a serious patient safety risk. Whilst human error and poor clinical judgement may be the cause of some under-diagnosis and misdiagnosis of hepatitis C, the problem is so widespread that it indicates an endemic system failure. Patients are at risk of remaining undiagnosed until the virus has caused irreparable damage to the liver, often resulting in the need for a liver transplant or premature death.

  8.  There is an effective treatment (pegylated interferon and ribavirin) available for hepatitis C, able to eradicate the virus in about 50% of patients overall, but it is carried out in secondary care settings, Appropriate referral to secondary care is therefore essential for patient survival. Calls to the Trust's helpline show that referral is far from universal. Indeed, in a Nottingham study 51% of patients diagnosed with hepatitis C were not referred.[295]

What the NHS should do next regarding patient safety

    —  How to determine best practice and ensure it is spread throughout the whole NHS

    —  How to ensure that learning is implemented

    —  What should be measured and assessed; and what data should be published

    —  What incentives there should be to improve patient safety

  9.  More must be done to equip GPs with the right information so they can correctly identify those who should be offered a hepatitis C test and interpret any result correctly. Professional awareness was part of the Department of Health Hepatitis C Action Plan for England published in July 2004 but it has not been effective. The NHS should undertake an audit of GP practice of hepatitis C care to identify the extent of and reasons for delays in diagnosis, referral and treatment. This should inform training and best practice guidance for GPs, overseen by PCTs and SHAs.

  10.  Meanwhile, all PCTs should ensure that hepatitis C case-finding and care are covered in GP protected learning time arrangements. Incentives to encourage diagnosis should be introduced, for example through Quality and Outcomes Framework (QOF) points or Payment by Results.

September 2008








289   ICM Healthcare 2008-Hepatitis C Regional GP Survey (The Hepatitis C Trust and Roche Products Ltd, London, 2008) Back

290   Clinical Pathways for Patients With Newly Diagnosed Hepatitis C-What Actually Happens (W.L. Irving; S. Smith; R. Cater; S. Pugh; K.R. Neal; C.A.C. Coupland; S.D. Ryder; B.J. Thomson; M. Pringle; M. Bicknell; J. Hippisley-Cox, J Viral Hepat. 2006;13(4):264-271). Back

291   For more information see http://www.hepctrust.org.uk Back

292   Hepatitis C in England: An Update 2007 (Health Protection Agency Centre for Infections, London, December 2007) Back

293   The UK vs. Europe: Losing the fight against hepatitis C (The Hepatitis C Trust, London, 2005) Back

294   ICM Healthcare 2008-Hepatitis C Regional GP Survey (The Hepatitis C Trust and Roche Products Ltd, London, 2008) Back

295   Clinical Pathways for Patients With Newly Diagnosed Hepatitis C-What Actually Happens, (W.L. Irving; S. Smith; R. Cater; S. Pugh; K.R. Neal; C.A.C. Coupland; S.D. Ryder; B.J. Thomson; M. Pringle; M. Bicknell; J. Hippisley-Cox, J Viral Hepat. 2006;13(4):264-271). Back


 
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Prepared 30 October 2008