Hepatitis C Best Practice

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1 FaCe It Hepatitis C Best Practice: Provision of care Name: Dr Tricia Cresswell (Executive Director of Public Health County Durham and Darlington PCTs), Dr Deb Wilson (Consultant in Health Protection, North East Health Protection Unit), Dr Fu-Meng Khaw (Consultant in Health Protection, North East Health Protection Unit), Dr Sushma Saksena (Consultant Gastroenterologist, County Durham and Darlington NHS Foundation Trust) Location: County Durham and Darlington PCTs, HPA North East and County Durham and Darlington NHS Foundation Trust Summary By working together, County Durham and Darlington Primary Care Trusts (PCTs), Health Protection Agency (HPA) North East and County Durham and Darlington NHS Foundation Trust have made important progress in improving the provision of hepatitis C care in their area. Their approach has included designing a care pathway, improving information management, extending outreach services, and raising awareness among primary care professionals. As a result, the number of patients being treated for hepatitis C infection has increased dramatically from a handful each year to 39 in the first year of implementation of the new pathway and service. Of the 39 cases starting treatment, six have cleared the virus and the others are still receiving or are in the process of being assessed to determine if treatment has been successful. Aims & Objectives The overall aim of the project was to improve access to testing, diagnosis and treatment, thereby reducing the level of undiagnosed hepatitis C infection in the community and prison environment. Key objectives were to: establish a clear pathway for accessing treatment tackle institutional barriers to accessing treatment How was the project carried out? In June 2005, a steering group was formed consisting of representatives from County Durham and Darlington PCTs including prison health teams, HPA North East, gastroenterology and GUM services from County Durham and Darlington NHS Foundation Trust and substance misuse services from Tees, Esk and Wear Valleys NHS Trust. The steering group meetings were chaired by Dr Fu-Meng Khaw of HPA s North East Health Protection Unit. 1

2 A simple and quicker pathway There was a need to ensure the pathway from testing to treatment, was simplified, where necessary, regardless of whether a patient was diagnosed by a GP, hospital consultant, drug worker, prison doctor/nurse or in a GUM clinic. Before the development of the pathway, patients requiring hepatitis C treatment were mainly referred to a tertiary hospital at least 20 miles away in Newcastle upon Tyne. Referrals were made without a standard set of laboratory tests having been undertaken and baseline information gathered, resulting in unnecessary hospital appointments, repetition of expensive laboratory tests and possible delays in assessment of the suitability of patients for treatment. For example, prisoners attending the hospital would usually require more than one visit in order for the results of tests (e.g. PCR, genotype) to be known and so suitability for treatment to be assessed meaning extra outpatient and prison escort costs and delay for the patient. The presentation of the pathway was kept very simple and is summarised in the form of flow diagrams with details of how to provide the best service for an individual patient from testing, to diagnosis, to referral requirements and treatments. The pathway also sets out what information should be provided to patients at different parts of the pathway so that information is consistent and appropriate to individual needs. As part of the pathway, a new referral form was produced to ensure that when a patient is referred for assessment for treatment all the necessary information about the patient and their tests is available at the first hospital appointment. The referral forms requested information about HCV RNA status, the genotype of the virus the patient was infected with, their viral load, hepatitis B immunisation status and medical history. This information helps inform the decision about the patient s suitability for treatment and contributes to making the service as cost effective as possible. The team recognised the need to ensure GPs were aware of the pathway, as well as the need to offer testing to at-risk patients. The pathway was initially promoted to GPs via the PCTs Professional Executive Committee, which disseminated information to GPs in the area. Additionally, Dr Sushma Saksena (Consultant Gastroenterologist) and Margaret Hewett (Specialist Hepatitis Nurse) held meetings 2

3 for GPs at the hospital to discuss the pathway and work in the area. The meetings went well, however the team recognises the need to continue engaging GPs in the area to maximise awareness. In order to encourage the use of the pathway, HPA North East staff routinely write to the GP of each case newly diagnosed by the laboratory as anti-hcv positive and encourage the patient s GP to consider referring the patient via the pathway after completing the referral form. Improving services for prisoners Prisoners have a higher rate of hepatitis C infection than the general population due to the association between injecting drug use and crime/imprisonment. There are four prisons in County Durham and Darlington holding a range of prisoners, male and female, young offenders and adults, both remand and sentenced prisoners in high and lower security settings. To better understand local needs, the steering group drew upon existing research, such as a North East research study funded by the National Treatment Agency for Substance Misuse that used qualitative methods to explore the barriers to uptake of hepatitis C testing within areas such as the prison settings. 1 The study identified issues such as lack of knowledge about HCV, low motivation for testing, lack of awareness about the testing procedure, and concerns about confidentiality and stigma as barriers to effective treatment. Institutional barriers included the way a prisoner had to apply for the test, issues around pre- and post-test discussion, difficulties in consistently offering all at-risk prisoners testing, and problems with continuity of care on transfer and release. Prior to the initial steering group meeting, transport of prisoners to a hospital 20 miles away in Newcastle upon Tyne for hepatitis C treatment was both costly and inconvenient for prisoners, prisons and PCTs. The team believed that compliance and effectiveness of treatment would be improved with access to a local service with nurse-led in reach to the prisons. The specialist nurse, sometimes accompanied by a consultant, administered hepatitis C treatment at the prisons and managed the side effects of offenders on treatment. The enthusiasm and involvement of prison healthcare on the steering group was vital to ensure that the needs of prisons and prisoners were built into the care pathway. 3

4 Hepatitis C Best Practice It was initially a challenge to commission this new hepatitis C treatment service but supported by a business case demonstrating the cost-benefit of providing a clear care pathway for prisoners and the change to Payment by Results (PBR), the new local HCV treatment service started at the University Hospital North Durham in March The service included a hepatitis C nurse specialist (Margaret Hewett) who was able to provide outreach support within prisons, and potentially to other settings in the wider community such as harm minimisation clinics. What was achieved? A hepatitis C treatment service was established at University Hospital North Durham in March 2007 and the number of County Durham and Darlington residents treated for hepatitis C has increased dramatically from a handful each year to 39 in the first year of implementation of the new pathway and service. Of the 39 cases starting treatment, six have cleared the virus and the others are still receiving treatment or are in the process of being assessed to determine if treatment has been successful. The All Party Parliamentary Hepatology Group assessed County Durham PCT as the most improved PCT regarding provision of care for patients with hepatitis C in its recent audit2. In recognition of this achievement, the PCT was awarded the inaugural Hepatitis C Trust Anita Roddick Award in February 2008 by the Hepatitis C Trust. Some of the team with the Anita Roddick award (left to right - Margaret Hewett, Dr Sushma Saksena, Dr Deb Wilson, Dr Tricia Cresswell, Yasmin Chaudhry (Chief Executive of PCT), Roberta Blackman-Woods MP Some prisoners who are being treated for hepatitis C are choosing to share information with others about their diagnosis, treatment and that they have cleared the virus. This gives a positive message to other prisoners that it is worth having a test as they will be supported and can be offered treatment if they have the infection. Hopefully this will decrease stigma about the virus among the prison population and increased the proportion of prisoners being tested and diagnosed. 4

5 Informing both current, and especially past, drug-users in the wider community that they are at risk and should have a hepatitis C test is more challenging. Peer education by successfully treated drug users may be an option to help reduce stigma and encourage others to be tested, knowing that they can be offered effective treatment. Further work is required in this area and to identify people infected many years ago who may not be aware that they have been at risk of hepatitis C infection and who will not be in touch with harm minimisation services or people tested positive for hepatitis C in the past but not referred for treatment or follow-up at the time of their diagnosis. Key Learning 1. Strong PCT support is essential Without the strong support of a champion within the PCT (in this case the Executive Director of Public Health) this project would not have succeeded. Previous attempts to develop hepatitis C services had failed because of the lack of a champion in the commissioning organisation. 2. Get commissioners on board early Involving commissioners at the early stages of planning and producing a detailed cost benefit analysis ensured that the campaign had adequate resources and support. 3. Look at the full picture Early steering group meetings involved a range of partners, which helped reveal the true extent of gaps in the care pathway and treatment services. 4. Raise awareness to support implementation Engagement with primary care professionals through awareness sessions was key to ensuring the care pathway lived and breathed that it wasn t just a care pathway on paper. Plans for the future Work is ongoing with regional specialist commissioners to assess the feasibility of sharing the care pathway across the North East to establish a region-wide network of treatment services. This could be a hubs and spokes model provided by two specialist hepatitis C centres (providing treatment for complicated cases including 5

6 those with HIV co-infection) plus a number of other more local hepatitis C treatment providers. The importance of partnership working in developing any pathway cannot be underestimated to ensure that the content is right and that all the agencies feel real ownership and sign-up to the implementation of the care pathway. Dr Fu-Meng Khaw (Chair of the Steering Group) Getting an initiative like this off of the ground clearly involves determination but also the willingness to work in partnership with other organisations. As Dr Deb Wilson says, A pathway is as good as the people behind it and working in partnership is key. It is crucial to have the zeal to say let s get this done. For further information, please contact Dr Deb Wilson at [email protected]. 1 Khaw FM, Stobbart L, Murtagh MJ. 'I just keep thinking I haven't got it because I'm not yellow': a qualitative study of the factors that influence the uptake of Hepatitis C testing by prisoners. BMC Public Health. 2007;7:98 2 Location Location Location. An audit of hepatitis C healthcare in England. An All- Party Parliamentary Hepatology Group Report 14 th February EF61D30DCB/0/Locationlocationlocation.pdf 6