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Hepatitis C |
Awareness
12 |
drinkanddrugsnews
| June 2013
www.drinkanddrugsnews.com
W
ith almost half of NHS commissioners having no measures in
place to increase hepatitis C treatment in the UK, according to a
recent Hepatitis C Trust report (
DDN
, April, page 5), the
importance of disseminating accurate information about the virus
and how to access treatment seems more crucial than ever. As a
former service user and hepatitis C sufferer himself, Phil Spalding set up the Hep C
Positive support group to offer others affected by the virus much-needed support and
advice on how to test for and cope with the disease. From starting out as bi-monthly
meetings, they grew into weekly sessions as it became apparent that more support
and information was needed, not only for sufferers, but also carers and the wider
community. Spalding was made hep C coordinator by Swindon’s community safety
commissioner, and given the opportunity to develop the project further.
This gave Spalding the chance to reach out to existing health and social
care services – in particular drug and alcohol services – to encourage referrals.
He found that a lack of accessible information and general education about the
virus had brought about massive stigmatisation around hepatitis C, similar to
the public opinion of HIV in the eighties. It became obvious to him that there
was an underlying idea that hepatitis C ‘only happened to bad people’ or
people who ‘weren’t worth it’, and that ‘all hep C sufferers were drug addicts
and criminals’. To maintain the success of the project, Spalding worked to
dispel the negative connotations and get people into treatment.
‘Most “addicts” don’t like the label society gives them and it’s one of the
reasons they may not like to talk about hep C. It’s just another negative label,’
he says, and so it became crucial to his role to raise awareness and distribute
the correct information to clients, their families and the community. The aim
was to make it easier for those who needed it to find a pathway to testing,
treatment and support.
To do this, Spalding sought to publicise both the virus and the project,
reaching out to professional organisations like the Hepatitis C Trust and DHI,
as well as the local DAAT and drug services, and getting coverage from the BBC
As NHS reforms put the future of hepatitis C services in the UK in
question, Phil Spalding tells
Kayleigh Hutchins
how the Hep C Positive
project has raised awareness about the virus in Swindon
and press agencies. He also organised an educational evening in partnership
with Swindon Borough Council, giving health professionals and patients a
chance to interact and learn more about the disease.
As the work done by the project depended heavily on the workers within
health services making referrals, Spalding aimed to demonstrate how the Hep
C Positive project could help their clients, giving them a safe place to talk to
others who understood the problems they were facing. ‘It’s about giving people
choices and opening as many doors as we can, enabling service users and
patients to, hopefully, find something that will motivate them into taking
responsibility and moving forward with their lives.’
Spalding approached each new client as both peer and counsellor, discussing
their feelings and encouraging them to go to the support group to open up to
others who are living with hepatitis C. ‘Some people are uncomfortable with this
idea at first because they are usually frightened and ashamed,’ he says. But once
they realised they were among peers and could relax in a friendly and non-
judgemental atmosphere, they were able to open up, giving Spalding the chance
to signpost other services that the client might need.
‘My role involves a lot of advocacy and what I call “hand holding”,’ he says,
which included helping clients to schedule and keep appointments at GP
surgeries and hospitals. Having gone through treatment for hepatitis C himself,
Spalding was able to explain complicated medical terms and inform clients and
their families about the treatment process in a way that was not too
overwhelming, and easier for them to come to terms with.
The Hep C Positive project has now helped many people from different
backgrounds develop the courage to get tested, and follow through to treatment
for the virus. It boasts a number of success stories to show how effective the
project has been, and the group is eager to share its members’ journeys to
support others around the country who may be experiencing hepatitis C.
In Grant’s case, the group meetings were a way of combating his isolation
from society, says Spalding. ‘When I first met Grant he was extremely nervous
POSITIVE ACTION