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HC 1048-III Health CommitteeWritten evidence from The Hepatitis C Trust (PH 161)

Summary of Key Points

Hepatitis C is a major public health challenge for the NHS in England and it is vital that much-needed improvements to testing, diagnosis and treatment rates are achieved through the proposed reforms. However, there is a real danger that hepatitis C could fall through the gaps created by the abolition of certain agencies and the lack of awareness about the virus amongst future commissioners.

Public Health England (PHE) should take a lead role in refining data collection on hepatitis C. The Health Protection Agency’s work on infectious diseases, particularly its role in the collection, management, analysis and interpretation of data for hepatitis C, must not be lost in the transition to PHE but should be strengthened and expanded. This data will be critical to inform local strategies and for effective commissioning.

Local authorities should be bound by decisions of the Joint Health and Wellbeing Strategy, which are based on public health needs as identified in the Joint Strategic Needs Assessment. The strategies should be published and open to scrutiny.

For hepatitis C low GP awareness is one of the greatest barriers to effective diagnosis and hence treatment of hepatitis C. Therefore, in order for GP consortia to play a role in public health, education on hepatitis C amongst GPs needs to increase and awareness messages should be targeted at GP and GP consortia through levers such as an indicator in the Public Health Outcomes Framework (as described below) or to include a topic for “Case finding for hepatitis C” in the Quality Outcome Framework (QOF). This is particularly relevant in the context of the new public health element which will make up 15% of the QOF.

Hepatitis C should be commissioned by the National Commissioning Board. GP commissioning for hepatitis C is likely to increase existing inequalities in health for hepatitis C patients due to drastically low levels of awareness of hepatitis C amongst GPs. This has been the single greatest barrier to diagnosis and treatment to date.

Background

1. 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 board, 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. The Trust campaigns to raise awareness, tackle stigma associated with hepatitis C and make the case to policy makers for greater education and information on hepatitis C and improved resources to prevent and treat the virus.

2. Hepatitis C is a major public health threat. It is a blood borne virus that primarily attacks the liver and can lead to cirrhosis, severe and potentially fatal liver disease and cancer. Symptoms may be generic and are frequently missed or misdiagnosed by GPs. The virus can also be asymptomatic. Therefore the majority of people currently infected with hepatitis C remain undiagnosed and may be passing on the virus to others. Prevalence estimates vary between 250,000 and 466,000 in the UK but only around 100,000 have been diagnosed to date and there are an estimated 12,000 new hepatitis C infections per year. However, 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.

3. Liver disease is the only one of the “big five” killer diseases in the UK for which the mortality rate is increasing. Addressing hepatitis C by testing, diagnosis and treating earlier would have a significant impact on the rising liver disease mortality curve.

The Creation of Public Health England within the Department of Health

4. The Hepatitis C Trust welcomes the focus on Public Health signalled by the creation of Public Health England. The new Public Health structure offers an opportunity to increase diagnosis, treatment and cure of hepatitis C. However there are significant risks that hepatitis C could fall through the gaps created by the abolition of certain agencies and lack of awareness amongst commissioners.

5. `It is important that with the creation of Public Health England the definition of roles and responsibilities between Public Health England and local authorities is clearly defined. Furthermore the definition of roles between Public Health England (and local authorities) and the National Commissioning Board requires further elucidation. It is crucial, for example, that all bodies are aware of who has responsibility for each part of hepatitis C healthcare in prisons (awareness, testing, diagnosis and treatment).

6. It is important that Public Health England has adequate powers over Local Authorities to ensure they are improving public health. These should be stronger than merely requiring local authorities to “have regard” to the public health outcomes framework.

The Abolition of the Health Protection Agency and the National Treatment Agency for Substance Misuse

7. The Hepatitis C Trust is deeply concerned about the abolition of the Health Protection Agency. It is important that there is an integrated approach to diseases such as hepatitis C when the functions of the NTA, HPA and Department of Health are combined into Public Health England. The Trust is concerned about the exodus of expertise and experience that has already begun in the face of the agency’s uncertain future within PHE. It is vital that the HPA’s work on infectious diseases, particularly its role in the collection, management, analysis and interpretation of data for hepatitis C, is not lost in the transition to PHE but is in fact strengthened and expanded.

8. Public Health England should take a lead role in refining data collection on hepatitis C. It is critical that appropriate, meaningful and timely surveillance is conducted and published to inform strategies to tackle hepatitis C and commissioning of local services. Data should be made available as quickly as possible to commissioners and to local health and wellbeing boards and any evidence of declining outcomes should be immediately highlighted. For example, data is not collected on hepatitis C treatment such as the numbers being treated each year and the numbers being cured. Without this it is impossible to judge whether progress is being made in tackling this virus.

The Future Role of Local Government in Public Health (including Arrangements for the Appointment of Directors of Public Health; and the Role of Health and Wellbeing Boards, Joint Strategic Needs Assessments and Joint Health and Wellbeing Strategies)

9. In the interests of a “joined up” local approach to public health, The Hepatitis C Trust welcomes that GP consortia will be required to take part in the local Joint Strategic Needs Assessment and develop the local Joint Health and Wellbeing Strategy alongside the local Director of Public Health and a representative from local Health Watch, among others, as part of the local Health and Wellbeing Board.

10. Given the importance of joint working across public health, the NHS and social care services, it seems appropriate that the Health and Wellbeing Board is the focus for ring-fenced public health budgets. For hepatitis C services a decision about improving diagnosis rates would lead to money being allocated to the local authority for awareness and to GP consortia in that area for testing and diagnosis. In this context, it is vital that the members of the Health and Wellbeing Board are bound by the decisions made within it. Currently, the legislation provides that members “have regard” to its decisions in the Joint Health and Wellbeing Strategy but we believe its members must be bound by its decisions. It is crucial that the strategy developed for public health in the Joint Health and Wellbeing Strategy is based on public health needs as identified in the Joint Strategic Needs Assessment.

11. In order to further improve the accountability and therefore the legitimacy of the Local Health and Wellbeing Board, the strategies developed by them should be open to scrutiny. Annual reports should include a published list of the board’s priorities and an explanation, based on publically available evidence, of how these address the specific health needs of the local population. The local population should be able to challenge their local Health and Wellbeing Board if specific local health issues are not being tackled, for instance if there is a large hepatitis C at-risk community but no plans to commission services to tackle this.

Arrangements for Public Health Involvement in the Commissioning of NHS Services

12. While national screening programmes will be managed by Public Health England, it should be underlined that local authorities can undertake targeted screening programmes among at-risk groups—such as among injecting drug users in areas of high hepatitis C incidence. In its supportive role Public Health England should provide guidance to local authorities on assessing the risk for hepatitis C and guidance on implementing awareness and screening programmes. There should also be clear lines of communication with the NHS and Social Care Service to ensure that data are used to inform commissioning across the health service.

Arrangements for Commissioning Public Health Services

13. The National Liver Disease Strategy should be used as a key resource for setting out how public health commissioning should work for liver disease. There should be coordination between the National Clinical Director for Liver Disease, Dr Martin Lombard, the liver team at the Department of Health and Public Health England. Given the scale of liver disease and its impact on public health, there should be a specific person or team within Public Health England focusing on wider liver health and hepatitis C.

14. Local Authorities should be obliged to commission services that are directly linked to the Joint Strategic Needs Assessment. This will ensure that the specific health needs of a local population, such as hepatitis C, are addressed through the public health ring-fenced funding rather than being directed to broad interventions for which the health benefit is not immediately obvious. There should be flexibility for this to change as the needs of the local population change. It should be mandatory for local authorities to commission prevention measures and testing for hepatitis C from GPs through the public health budget.

15. The Hepatitis C Trust welcomes the proposal in the White Paper that Joint Health and Wellbeing Boards should have a duty to ensure the collection and use of data on public health at a local level. Local Directors of Public Health could hold them to account on this. To enable accurate and local health economy-specific intelligence on infection rates, data should be collected on infection rates of hepatitis C at GP consortia level. Data should include inequalities groups and high risk groups including whether someone is, or has been, an IDU.

16. For hepatitis C low GP awareness is one of the greatest barriers to effective diagnosis and hence treatment of hepatitis C. Therefore, in order for GP consortia to play a role in public health, education on hepatitis C amongst GPs needs to increase and awareness messages should be targeted at GP and GP consortia. An excellent lever to ensure that GPs are aware of the need to diagnose hepatitis C at an early stage would be an indicator in the Public Health Outcomes Framework (as described below). Another way to educate GPs about hepatitis C and to test people who have risk factors for hepatitis C would be to include a topic for “Case finding for hepatitis C” in the Quality Outcome Framework (QOF). This is particularly relevant in the context of the new public health element which will make up 15% of the QOF. The Hepatitis C Trust has made a submission to the QOF topic selection process for the 2013–14 QOF suggesting a topic for case finding for hepatitis C.

17. It is critical that all parties are aware of their responsibilities in the new commissioning structure. The Hepatitis C Trust is aware of anecdotal evidence which suggests that some GPs working in “pathfinder” commissioning consortia and their local DAAT teams are unaware of who is to pay for testing for hepatitis C in settings such as DAATs. Clear guidelines on who commissions what, and where, are essential.

The Future of the Public Health Observatories

18. It is crucial that GP consortia and local authorities commission public health awareness campaigns and services that reflect the public health needs of their local population, and that surveillance is conducted to inform the commissioning of services. The collection and publication of local public health data is critical to ensuring that disease areas which should be local priorities are tackled, rather than simply those areas with greater awareness amongst commissioners and a mobilized, vocal patient body.

The Structure and Purpose of the Public Health Outcomes Framework

19. The Hepatitis C Trust welcomes the publication of the public health outcomes framework as much work is needed to drive up standards of services to tackle public health issues in England. Hepatitis C testing, diagnosis and treatment spans a number of the domains and thus the framework offers real potential to raise awareness of hepatitis C and improve diagnosis rates among those at risk. However, responsibility for improvement against these indicators needs to be clearly shared across the NHS and Public Health to prevent each section of the health service believing it to be the responsibility of the other.

20. We particularly welcome the proposed inclusion of the indicator of “mortality rate from Chronic Liver Disease in persons less than 75 years of age” under domain five of the Public Health Outcomes framework, to be shared with the NHS Outcomes framework. This would ensure that the public health service prioritises awareness and screening of hepatitis C and that the NHS in turn offers treatment to those who are identified with the virus through the public health service. By following this approach, the burden on the NHS could be greatly reduced through avoiding preventable liver disease.

21. The Hepatitis C Trust has also recommended that an indicator be included in domain four (Prevention of ill health: Reducing the number of people living with preventable ill health) of “Number of patients diagnosed with hepatitis C who are found to have liver cirrhosis or liver cancer”. This could easily be measured as HPA routinely extracts patients with codes for HCV, primary liver cancer and end stage liver failure and matches them with data on new diagnoses of hepatitis C. This could equally well be done with the codes for cirrhosis.

22. It is important that the measures within the Public Health Outcomes Framework, including the data collected, reflect the aims of the national liver disease strategy which is currently under development and which will be an important resource in setting out how the different parts of the health service will work together and should complement what is in the outcomes frameworks.

23. It is also important that the focus on outcomes is not so rigid as to exclude sensible and much needed public health interventions where the public health benefit may not be immediately seen nor be easily measured, for example, preventing transmission of the hepatitis C virus. The time lag before the long-term benefits of public health measures are seen must be considered. For example, for those investing in hepatitis C testing the benefits on liver mortality may not be seen for a number of years. In the interim period, local authorities may decide to redirect spending in the search for fast results and thus there should be a clear focus on screening or diagnosis rates for hepatitis C within domain 4 as set out above to make sure that the longer-term benefits are achieved.

Arrangements for Funding Public Health Services (including the Health Premium)

24. It is vital that the budget for funding public health remains ring fenced. It is also vital that resource allocation is based on solid data on the greatest public health threats for a particular area.

25. The introduction of “health premiums” could be an effective way of targeting resource where it is most needed. Public health and local government partners should be able to attach this to issues that affect the local population—for example, in areas where the number of people infected with the hepatitis C virus is high, the health premium could focus on awareness and screening campaigns for at-risk groups. Local priorities should be decided at the Joint Health and Wellbeing Board and should be published to enable public scrutiny of the public health priorities of local areas.

26. Given their expertise in public health and hepatitis C in particular, Health Protection Agency staff should be represented in the group developing the health premium formula. The National Clinical Director for Liver Disease and the liver team at the Department of Health, as well as patient representatives, should also be included in the group developing the formula.

27. It is important that measures are directly linked to health improvement. Local authority budgets are being reduced and there is a risk that many activities that may be cut could be covered by a public health budget. In order to maintain a focus on reducing inequalities, there should be measures focused on disadvantaged groups—for example injecting drug users have a higher rate of hepatitis C infection and thus screening among this group should be a priority.

28. Measures for the health premium should be linked to achieving the best outcomes rather than just minimum standards. This will ensure that additional payments are targeted to local authorities that have achieved real health improvements. Data to support health premiums should be disaggregated according to gender, age, socio-economic group and at-risk group to enable effective monitoring of reductions in health inequalities. The payment should be linked to overall improvement and a reduction in the inequalities identified.

29. Incentives can help to improve the performance of providers. However it is important that this is not to the disadvantage of areas with complex needs. It is important that the health premium system does not disadvantage people who experience health inequalities because of failing local authorities in the context of a system in which local authorities who do not make progress are not given the health premium.

30. The time-lag between investing in interventions and the realisation of a clear benefit in outcomes should be taken into account. For hepatitis C, the impact on liver mortality through focusing on early diagnosis will not be seen for some time. In this way, proxies for outcomes such as the number of patients diagnosed with hepatitis C who are offered treatment could be a good way to measure health benefits in the shorter term.

The Future of the Public Health Workforce (including the Regulation of Public Health Professionals)

31. The public health workforce, including social care professionals, drug and alcohol action teams (DAAT teams) and pharmacists will play an important role in supporting and delivering public health initiatives. In the context of the new public health environment it will be important for GPs to engage with other local healthcare providers both as commissioners, for example by commissioning local pharmacies to offer hepatitis C testing, but also as practitioners, where joint working with DAAT teams and local pharmacists will be crucial to delivering effective public health interventions.

How the Government is Responding to the Marmot Review on Health Inequalities.

32. Hepatitis C disproportionately affects disadvantaged, vulnerable and socially excluded people, particularly homeless people, prisoners and injecting drug users. The majority of hepatitis C patients have already experienced many of the social inequalities in health. For example, research conducted to inform the Scottish Hepatitis C Action Plan found that 75% of hepatitis C patients are from the two lowest socio-economic quintiles. These health inequalities are exacerbated by inequality in access to treatment and inequality of outcomes.

33. Experience has shown that the lack of central commissioning for hepatitis C has not achieved adequate outcomes for patients. The UK ranked 13th out of 14 countries on the usage of hepatitis C drugs in a recent report by Professor Sir Mike Richards for the Secretary of State Extent and Causes of international variations in drugs usage. The All-Party Parliamentary Hepatology Group’s Report of their audit of hepatitis C services “In the Dark” found huge variations in hepatitis C services available to patients across the country through internal hospital policies, both formal and informal. Around a third of hepatitis C patients referred to hospitals are not being offered treatment. Twelve hospitals refused re-treatment to patients despite re-treatment being recommended by NICE. Around 10 hospitals refuse NICE approved treatment to all injecting drug users, despite the lack of any convincing evidence of compliance problems in IDUs. Moreover, studies of reinfection rates have shown a very low re-infection rates in people in whom the virus has been eliminated. These inequalities in access to effective health services need to be addressed.

34. GP commissioning for hepatitis C is likely not only to fail to reduce existing inequalities in health for hepatitis C patients but actually to increase them. Drastically low levels of awareness of hepatitis C amongst GPs has been the single greatest barrier to diagnosis and treatment. A move to commissioning treatment services for hepatitis C patients by a group with little knowledge of hepatitis C would create greater inequalities in outcomes than those already existing and would add yet another layer of inequalities to this already significantly disadvantaged group. This is quite apart from the obvious long-term cost implications for the NHS through patients, who could otherwise have been treated and cured, presenting with liver cirrhosis and cancer.

35. The NHS Commissioning Board will have a duty both to (a) Reduce inequalities between patients with respect to their ability to access health services’ and (b) “reduce inequalities between patients with respect to the outcomes achieved for them by the provision of health services”. By commissioning treatment for hepatitis C the board would be explicitly exercising its functions relating to inequalities in health.

June 2011

Prepared 28th November 2011