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.
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
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.
1The 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.
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
2007. 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 audit
2. 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 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.
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
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
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].
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