Written evidence from The Hepatitis C
Trust (COM 92)
BACKGROUND—THE
HEPATITIS C TRUST
1. The Hepatitis C Trust (THCT) is the national
UK charity for hepatitis C. It is a patient-led and patient-run
organisation: most of its patrons, trustees, staff and volunteers
either have hepatitis C or have had it and have cleared it after
treatment.
BACKGROUND—ABOUT
HEPATITIS C
2. Hepatitis C is a blood-borne infectious
virus that can cause cirrhosis and liver cancer. However, it is
preventable and treatable. The HPA estimate that there are 198,000
people aged between 15 and 59 years with HCV antibodies in England
and Wales although some research shows evidence of prevalence
of 466,000 people in the UK (University of Southampton, 2006).
Only around 70,000 hepatitis C patients have been diagnosed.
3. Deaths from hepatitis C are rising and
cases of hepatitis C related cirrhosis and liver cancer are expected
to increase to around 11,000 by 2015 (Hepatitis C in the UK,
Health Protection Agency, December 2009).
4. As hepatitis C is an infectious blood-borne
virus, the undiagnosed prevalent pool represents a serious transmission
threat. There are estimated to be around 12,000 new hepatitis
C infections per year (Out of Control, The Hepatitis C
Trust, July 2009).
BACKGROUND—SHORTCOMINGS
IN HEPATITIS
C COMMISSIONING IN
THE CURRENT
SYSTEM
5. Hepatitis C has traditionally not been
a focus of attention for NHS services and this is reflected by
problems in commissioning, quality and capacity at every stage
of the patient pathway. An Action Plan for hepatitis C was published
by the Department of Health in 2004, but this did not contain
any levers, benchmarks or timetables to ensure implementation.
Successive audits of the implementation of the Action Plan and
commissioning, provision and management of hepatitis C services
have revealed stark variations in service performance:
— Location, Location, Location (2008),
an All Party Parliamentary Hepatology Group report on implementation
of the Department of Health's Action Plan for Hepatitis C,
found that four years after publication more than one third of
PCTs had no protocol for hepatitis C testing and screening, and
that patients faced treatment delays of more than three months
(or delays were not monitored) at more than half of PCTs.
— A 2009 audit of Strategic Health Authority
(SHA) performance on hepatitis C (Hepatitis C: Out of Control,
The Hepatitis C Trust, July 2009) revealed that, despite being
charged with this responsibility in the Action Plan, 70% of SHAs
were failing to oversee implementation. Significantly, six out
of 10 SHAs had not conducted any assessment of hepatitis C provision
or the needs of their populations.
— In 2010, an audit of hospitals providing
hepatitis C services (In the Dark: an audit of hospital hepatitis
C services across England, All Party Parliamentary Hepatology
Group, August 2010) showed that a third of hepatitis C patients
referred to hospitals are not being offered treatment despite
the fact that it is shown to clear the virus in around half of
patients. Treatment levels vary considerably between hospitals—from
20% to 100%.
6. An illustration of the challenges facing
hepatitis C services was provided in the recently published Extent
and causes of international variation in drug usage which
found that usage of hepatitis C drugs in the UK was significantly
lower than in comparable countries, with the UK ranking 13th of
14 countries studied. This is particularly concerning because
the drugs considered have strong NICE approval. The report identified
poor service organisation, capacity and planning as potential
explanations (Extent and causes of international variations
in drug usage, Department of Health, 27 July 2010). The development
of a national liver strategy was highlighted as being the primary
mechanism for addressing these challenges.
INFORMING COMMISSIONERS
7. Effective commissioning requires high-quality
information and under the new arrangements, services will suffer
where there is a shortage of data available. This will need to
be addressed as a matter of urgency for several disease areas,
particularly hepatitis C, where there is no standardised national
data collection.
COMMISSIONING JOINED
UP SERVICES
8. Different aspects of the hepatitis C
pathway will be commissioned by different elements of the service,
including public health, NHS and social care. It will be important
to ensure that services are effectively aligned with the reforms
and make full use of the opportunities which will be created to
improve services and outcomes. Failure to ensure early alignment
will, however, create a risk that the development of hepatitis
C services will be further retarded.
9. THCT therefore wholeheartedly welcomes
the National Strategy for Liver Disease which is currently being
developed and which will help to join up liver disease, particularly
hepatitis C, commissioning across public health, NHS and social
care agendas. We are calling for levers to ensure the Strategy
is implemented as a matter of urgency once published.
10. A commissioning outcomes framework for
hepatitis C, as proposed in the NHS White Paper, would help to
drive improvements in hepatitis C service delivery and should
be developed as a priority.
SPECIALIST COMMISSIONING
11. THCT recommend that hepatitis C is commissioned
at a higher level owing to the specialist nature of hepatitis
C treatment (which will become more complex as new treatments
are introduces in coming years), and of cirrhosis and liver cancer.
12. As most hepatitis C is undiagnosed,
if hepatitis C services are commissioned locally there may be
a perverse incentive for local commissioners to keep diagnosis
efforts to a minimum as a diagnosed patient will start on the
patient pathway and will be likely to access treatment which will
cost the local health service. While hepatitis C treatment has
an immediate cost to a local health service, it is NICE approved
and is cost effective per QALY. Furthermore, treating patients
has been proven to save health services money in the long-term,
helping to avoid costly interventions such as liver transplants
when the disease has progressed and caused cirrhosis. However,
there is a danger that local commissioners will look focus on
short-term costs and will not commission to encourage more diagnoses
which would be in the interest of the public health of the local
area and nation.
PROVIDING FOR
VULNERABLE GROUPS
13. There is a danger that socially excluded
and vulnerable patient groups could be overlooked within the new
commissioning arrangements as they are less likely to lobby for
services and their causes are less likely to be championed in
the media. This is an important issue for hepatitis C patients:
the majority of hepatitis C patients are either current or ex-injecting
drug users (IDUs). IDUs tend to be socially and economically deprived
(Drug Misuse and the Environment, Advisory Council on the
Misuse of Drugs 1998, chapter 8). Research undertaken by Health
Protection Scotland to develop the phase II of the Hepatitis C
Action Plan for Scotland found that 75% of HCV patients were from
the bottom two socio-economic quintiles (Divided Nations, the
All-Party Parliamentary Hepatology Group, 2008).
14. There is evidence that hepatitis C prevalence
is higher in some minority ethnic groups, such as those of Pakistani
origin, than in the general population. A recent study found that
in its test sample, the prevalence of anti-hepatitis C virus (HCV)
antibodies, in people of South Asian origin was 1.6%, and in people
born in Pakistan it was 2.7% (Foster et al Journal of Viral
hepatitis 2009).
15. Levers should be created to ensure that
commissioners pay equal attention to diseases that disproportionately
affect vulnerable groups. For example, treating current hepatitis
C infected IDUs has been proved to be as effective as treating
non-IDUs, and will reduce the pool of infection in a person at
high risk of transmitting the virus. However, very few hepatitis
C infected IDUs are treated each year. Therefore, information
and levers should be available to commissioners to encourage this
approach to addressing hepatitis C. THCT hopes that the NHS Commissioning
Board, which has responsibility to monitor health inequalities,
will consider hepatitis C a key area of concern.
COMMISSIONING FROM
THIRD SECTOR
PROVIDERS
16. Patient groups, such as THCT, are well
placed to offer a range of patient-focused support services and
can play a key role in awareness-raising drives. For example,
THCT offers a range of services that GP and local authority public
health commissioners could commission for their local populations:
— health days to help chronic hepatitis
C patients manage their symptoms and virus thus leading to fewer
GP appointments and slower disease progression;
— training for health professionals, prison
and social care workers; and
— local awareness campaigns, including
testing drives to improve diagnosis rates.
17. To maximise the potential of this, commissioners
will need to proactively engage third sector patient group providers.
This is particularly important to ensure the engagement of small
charities which are often best placed to deliver excellent, cost-effective
and locally-focussed services. Big charities are likely to be
engaged with commissioning procedures already so extra effort
should be made by commissioners to explore the potential of smaller
and locally based charities. A website to allow commissioners
and providers to communicate and make links could assist this,
following similar principals to the London 2012 "CompeteFor"
brokerage service.
October 2010
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