Have you ever wondered how your local hepatitis C services compare to those available in other parts of the country

HEPATITIS C
RESULTS FOR YOUR
LOCAL AREA
Have you ever wondered how your local hepatitis
C services compare to those available in other
parts of the country? We know there is a
‘postcode lottery’ of hepatitis C care: only some
treating hospitals have specialist hepatitis
nurses and consultant hepatologists, diagnosis
rates vary across the country and waiting times
for specialist appointments can be anything
between 0 and 18 weeks, maybe more,
depending on where you live.
The patient experiences we hear on the helpline
confirm that the quality of services varies widely
across the country. Recently someone called up
who had been misdiagnosed for eleven years
and in that time had had surgical interventions
seven times without being correctly diagnosed!
Our patient advocate is kept busy trying to
access services for some patients, such as retreatment,
that are readily available for others in
different hospitals.
We decided to find out why this ‘postcode
lottery’ has been allowed to persist, despite the
government’s publication of a nationwide
hepatitis C Action Plan in 2004. The Action Plan
tasked Strategic Health Authorities (the regional
level of the NHS, abbreviated to ‘SHA’s) with
overseeing the Plan’s actions for local health
services - both Primary Care Trusts (PCT’s) and
NHS Trusts.
Our new report, ‘Hepatitis C: out of control’,
revealed that 6 of the 10 SHA’s had failed to
oversee the government’s strategy over the past
five years, scoring less than 33 out of 100 in
our audit.
This means that most SHA’s had no idea what
hepatitis C services were available in their area
– they had not conducted any sort of
assessment of hepatitis C provision or the
needs of their populations. Only four of the
SHA’s had even communicated with their
constituent PCT’s about hepatitis C in the last
three years.
You can see your SHA’s score in the table (right).
This lack of oversight has allowed many PCTs
and hospitals to pay little attention to the
government’s Action Plan, allowing diagnosis
rates to remain low, infection rates to remain
high, and hepatitis C infrastructure to be
inadequate in many parts of the country.
What a low score means for
patients
Lesley Jenkins (pictured), who lives in Bradford
in the low-scoring Yorkshire and The Humber SHA
area, was misdiagnosed for several years and
only realised she had hepatitis C when she
heard Anita Roddick speaking about her
experiences on Radio Four. Lesley had also had
a baby and blood transfusion in the same year
as Anita and realised that the fatigue and
achiness she had been suffering from could be
hepatitis C.
Lesley feels she has had to push her local NHS
at every stage of her illness – she asked for the
hepatitis C test; she had to push to receive
treatment (which unfortunately was
unsuccessful); and she found out about a
treatment trial in London from an internet chat
forum and registered for it with no help or
guidance from her doctor.
In a perfect world, where Yorkshire and The
Humber SHA had ensured that hepatitis C
services were being developed and improved
locally, awareness amongst health professionals
would have been greater and Lesley would have
been diagnosed much earlier; she would have
had a higher chance of treatment clearing the
virus if started earlier; and, when it was
unsuccessful, her hepatologist would have
informed her of future options, including
treatment trials.
A growing problem
Our report shows that hepatitis C is ’out of
control’ in another way: the number of people
infected with hepatitis C is growing rapidly.
There are likely to be almost 13,000 people
becoming infected with hepatitis C each year,
more than five times the number that eradicate
the virus through treatment (in 2007, 4,370
patients received treatment and around half of
these cleared the virus).
In terms of health service development and
numbers infected, hepatitis C is spiraling ‘out of
control’.
It is clear that the 2004 Action Plan has not
worked. We have been pushing the
government for a national strategy for liver
disease that will address hepatitis C and we
are hoping that an announcement will be
made soon. We want this to be driven forward
by a liver czar who will make sure that all
levels of the NHS fulfill their duties to
hepatitis C patients.
We need your input to make sure services are
improved for patients so please take part in our
‘Patient Manifesto’ (details on page 14) to
make sure your voice is heard.
You can read the full report on our website.
Key: • Excellent oversight of implementation of the Action Plan ………......91-100
• Very good oversight of implementation of the Action Plan ……… .....81-90
• Good oversight of implementation of the Action Plan ……………......61-80
• Fair oversight of implementation of the Action Plan ……………….... 41-60
• Poor oversight of implementation of the Action Plan …………….......21-40
• Very poor oversight of implementation of the Action Plan ………........0-20