Health and Social Care Bill

Memorandum submitted by The Hepatitis C Trust (HS 72)

Background: hepatitis C:

· Hepatitis C is a blood borne, cancer-causing infectious virus that primarily attacks the liver and can lead cirrhosis, severe and potentially fatal liver disease and cancer. It can be asymptomatic or symptoms may be generic and are frequently misdiagnosed by GPs. Therefore the majority of people currently infected with hepatitis C are undiagnosed at present and may be passing on the virus to others.

· The Health Protection Agency estimates that there are around 250,000 people living with hepatitis C in the UK, most of which are undiagnosed, and of those diagnosed less than half have received treatment. [1] Some estimates put the prevalence of hepatitis C as high as 466,000 people in the UK. [2]

· Around 100,000 hepatitis C patients have been diagnosed in the UK to date. [3]

· There are an estimated 12,000 new hepatitis C infections per year. [4]

· Hepatitis C is preventable and curable. The virus can be successfully treated and cured in around half of patients, preventing premature death and complicated and costly health interventions. Treating all hepatitis C patients according to NICE guidance would cost the NHS approximately £1.6 billion. The estimated cost to the NHS alone of failing to diagnose and treat existing patients could be between £4 billion and £8 billion over the next 10 years. [5]

Background: The Hepatitis C Trust:

The Hepatitis C Trust is the national UK charity for hepatitis C. It is a patient-led and patient-run organisation: almost all of its patrons, trustees, staff and volunteers either have hepatitis C or have had it and have cleared it after treatment. It provides information, support and representation for all those affected by the disease.

Summary: Key opportunities and threats for hepatitis C with the Bill’s healthcare reforms:

· Hepatitis C could be virtually eradicated in the next generation if the NHS, GP Consortia and local Health and Wellbeing Boards focus on diagnosing, treating and supporting hepatitis C patients as a priority.

· Over 100,000 hepatitis C patients in England are undiagnosed – the new GP Commissioning arrangements present an opportunity to address this but only if GP awareness is significantly improved through training and incentives.

· The patient voice should be central to health services but there is a danger that this will be lost unless specifically protected by legislation.

· As h epatitis C disproportionately affects disadvantaged, vulnerable and socially excluded people, The Hepatiti s C welcomes the duty on the NHS Commissioning Board to tackle health inequalities.

· Local Joint Health and Wellbeing Strategies could be an excellent way of joining up public health commissioning across local areas. However, unless GP consortia are legally bound to comply with them, they may well become meaningless.

Part 1, clauses 9-10: GP commissioning and poor GP awareness

Low awareness of hepatitis C amongst GPs has traditionally been the greatest barrier to hepatitis C diagnosis and treatment. Hepatitis C was only discovered in 1989. When most of today’s heads of GP consortia were training, hepatitis C was not on the syllabus. Hepatitis C is often asymptomatic until a very late stage by which time it has already progressed to cirrhosis and/or liver cancer.

A lack of awareness of the risk factors is a significant factor in lack of diagnosis. Hepatitis C is transmitted through blood-to-blood contact and therefore the main risk factors are sharing any drug taking equipment, medical treatment abroad where equipment is not sterilised, tattoos or piercings in unsterilised circumstances and NHS blood transfusions and blood products before 1991; yet few GPs test people with these risk factors.

Under the new arrangements, GPs will be responsible for commissioning services for hepatitis C patients. This is very concerning in a disease area where GP awareness is so low.

Please seek reassurances that steps will be taken to ensure that GP awareness and understanding of hepatitis C will be addressed through improved training and the introduction of case-finding incentives.

Part 1, clause 19 (schedule 1, chapter A1) : NHS Commissioning Board and the Patient V oice

· A key statutory duty of the NHS Commissioning Board, as set out in Clause 19 (schedule 1 chapter A1) of the Health and Social Care Bill is to ‘promote the involvement of patients and their carers in decisions about the provision of health services to them’. However, the NHS commissioning board, responsible for commissioning services including specialist services and primary care services, has no patient representation, making it less likely that it will be able to fulfil its remit.

· The Hepatitis C Trust recommends that a member of the board should be designated a ‘patient champion’. This person, ideally a patient themselves, would be a link between patient organisations and the board, meeting with and receiving representations from patient organisations which could then be fed into the decision-making process of the board.

Part 1 , Clause 19 (schedule 1, chapter A1) : Health inequalities

· Another key statutory function of the NHS Commissioning Board, as set out in Clause 19 of the health and social care bill, is to ‘reduce inequalities between patients with respect to their ability to access health services’ and ‘to reduce inequalities between patients with respect to the outcomes achieved for them by the provision of health services’.

· Targeting the health of disadvantaged groups is crucial to reducing health inequalities and therefore The Hepatitis C Trust hopes the NHS commissioning Board will consider hepatitis C a key area of concern.

· Hepatitis C disproportionately affects disadvantaged, vulnerable and socially excluded people, particularly homeless people, prisoners and injecting drug users. For example, research conducted to inform the Scottish Hepatitis C Action Plan found that 75% of hepatitis C patients are from the 2 lowest socio-economic quintiles [6] . Further, there is a relatively high prevalence of hepatitis C in the first generation South Asian migrant community [7] . Levers should be created to ensure commissioners consider disease areas which disproportionately affect lower social-economic groups, such as hepatitis C.

· Information and levers should be available to commissioners to encourage approaches to addressing hepatitis C which reduce health inequalities. For instance, treating current hepatitis C infected injecting drug users (IDUs) has been shown to be as effective as treating non-IDUs [8] , and will reduce the pool of infection in a person at high risk of transmitting the virus.  However few hepatitis C infected IDUs are treated each year. 

· The Hepatitis C Trust urges the NHS Commissioning Board to create levers to ensure hepatitis C is considered in GP consortia commissioning decisions, as part of its statutory duty to reduce inequalities

Part 5, C hapter 2 clause 17 7 : Local Health and Wellbeing Boards - Lack of streng t h in holding GP consortia to account

· The patient voice is to be incorporated into the system at a local commissioning level through the Joint Strategic Needs Assessment and Joint health and Wellbeing Strategy created by local Health and Wellbeing Boards, of which both local HealthWatch and local GP consortia will be part. However, the legislation provides that GP consortia must ‘have regard’ to these arrangements (Clause116B to be inserted after section 116 of the Local Government and Public Involvement in Health Act); they will not be bound by them.

· The Hepatitis C Trust recommends that a stronger measure be put in place to ensure that GP consortia are legally bound to comply with the Joint Health and Wellbeing Strategy. If this does not happen, GP consortia will not be properly accountable in their commissioning decisions and the patient voice within the system provided by local HealthWatch’s place on the local Health and Wellbeing Board will be meaningless.

Suggested Amendments:

· Patient champion on the NHS commissioning board:

Schedule A1, paragraph 3, after (4) insert:

(5) One non-executive member on the Board is to be tasked with representing patient organisations

in carrying out their functions on the Board

· Strengthening of Joint Health and Wellbeing Strategy:

Clause 177: A responsible local authority and each of its partner commissioning consortia must, in

exercising any relevant functions, have regard to - …

Replace ‘must’ with ‘is legally bound’

Replace ‘have regard to’ with ‘to uphold’

March 2011

[1] Hepatitis C in the UK: 2009 report, HPA, 2009

[2] Losing the figh t against hepatitis C. London: The H epatitis C Trust and the University of Southampton, 2005

[3] Hepatitis C in the UK: 2009 report, HPA, 2009

[4] Out of Control, The Hepatitis C Trust, July 2009:

[5] Losing the figh t against hepatitis C. London: The H epatitis C Trust and the University of Southampton, 2005

[6] Presentation by Professor David Goldberg, Hepatitis C Action Plan for Scotland: Phase I 2006-08,Phase II 2008-11

[7] HPA Press Release, May 2010: ).

[8] ‘ Hepatitis C Treatment for Injection Drug Users: A Review of the Available Evidence ’, Margaret Hellard , Rachel Sacks-Davis , and Judy Gold in Clinical Infectious Diseases Volume 46, Issue 4, 2009: