The NiNTh NaTioNal Service USer coNfereNce
6 |
drinkanddrugsnews
| March 2016
‘I
didn’t know how long I’d had hep
C. I could have contracted it at
any time in 30 years of active
drug use,’ Phil Spalding of the
Hep C Positive support group told
delegates at
Get The Picture’s
opening
session. ‘But the one thing that struck
me when I first came out of rehab was
that no one I came across professionally
knew anything about it.’
This was ‘no fault of theirs’, he said,
adding that there was also a great deal
of fear around the subject. ‘I thought,
“Why is no one talking about this?”’ He
began doing voluntary work and
attending 12-step groups but was keen
to find out what he could do about his
condition. ‘I had it about as bad as you
can have it, with a very high viral load. I
was pretty much ill all the time, and I
didn’t want to die from something I
could do something about.’
He got in touch with the Hepatitis C
Trust – ‘who were great’ – and they
helped point him towards a treatment
pathway. Once on this, he and a friend
from rehab began offering each other
mutual support, out of which grew a
very small support network based in his
home town.
However he still wanted to know
‘what the big issue with talking about
hep C was’, he said. ‘And we still have
this issue where, if you have hep C,
people will say, “Are you a drug addict?”
Is that helpful? No, it’s bollocks. If
someone has hep C we call them a
patient, not a service user or a drug
addict. We’re all patients, we all go to
the doctor. As soon as I started to see
myself as a patient then I started to feel
more like part of the community.’
When he set up the support group
one major issue he found he had to
address was how to ‘get people to
perceive it as a group where you could
come safely, and not get your purse
nicked’ he said. ‘It was a real
opportunity to educate people.’
The group also provided a vital
chance to have informed discussions
about treatment and therapy options,
he stressed. ‘People would say, “The
treatment’s terrible – my mate told
me”. I’d say, “When did your mate
qualify as a doctor?” People didn’t even
know the difference between screening
and testing.’
The first thing the group did was to
make sure that it was inclusive, he told
the conference, open to patients,
professionals, family members, carers
and friends – ‘because our belief is that
these issues affect us all’ – and with no
barriers based on where people lived.
The group was now also working
closely with a partner organisation in
France, he said. ‘They have a shop in
Strasbourg, right in the centre – no one
has to creep around – and we’ve got
plans to do something similar here.
Why should this thing be a secret?’
He’d been determined to hold on to
his voluntary principles and ‘stay
independent for a purpose’, he said, but
the value of the organisation’s work had
led to it being commissioned. ‘We’ll come
to your region,’ he told delegates. ‘We’ll
support, educate, use the local media
and television. The best thing we’ve
found you can do is to talk about it.’
N
ext up were two more
support group
representatives, Lanre
Babalola and Lindsay Oliver of
Bubic (Bringing Unity Back Into The
Community). Based in north London,
the group was mainly aimed at ex-crack
users, explained Babalola, and provided
peer support, group sessions, family
and friends workshops, volunteering,
outreach and more.
It used a wide range of techniques
including drama and role-play, he said,
as well as a variety of different therapy
disciplines, taking aspects of each and
tailoring them to the group’s needs.
Group and individual advice sessions
included issues like relationships and co-
‘Even if people don’t
particularly care about
the harm they’re doing
to themselves, you can
get them to look at
the harm they’re doing
to their community
and their family.’
lanrE BaBalola
The day’s opening session
heard a range of passionate
presentations on the theme of
getting your message across
‘Why should this thing
be a secret? ...The best
thing we’ve found you
can do is to talk about
it.’
Phil SPalding
