As well as the patient
power piece in this issue (‘Service
as Usual’), take a look at the news snippet on page 10
about the DoH’s recently completed report on Patient Involvement
(see www.doh.gov.uk/involvingpatients/).
But while Patient Power may be a Good Thing, by god the subject
is boring.
Another recent report ruefully acknowledges this. The HIV Community
Involvement Project (HCIP) was an offshoot of the attempt to formulate
London’s own HIV Strategy (which, as far as we know, has not
so far appeared).
Well, they had lots of meetings, and made lots of recommendations.
But the main conclusion they were forced to reach was how few of
the Community could be arsed to Be Involved.
This was the summation after the poor response: “There was
little interest in developing HCIP further once the consultation
exercise was over...there had been no recent demand for such a project,
and maybe it was the wrong time to establish one at all.”
Why? Well, for a start, the report says,: “The only service
many positive people now access is their clinic and the only service
providers they see are medical professionals. Advice is accessed
on a more individual, private basis - through, for example, websites”
(and magazines, we could add). Then there is the fragmentation of
the ‘HIV community’: “When people choose to meet
together it is now more likely to be on the basis of a shared identity
as well as a shared virus - as African, gay, asylum seeker, women,
parent or some other identity.”
But, above all, there is one reason HIV can’t, and never will,
fit into the Brave New NHS aim of local community power. People
with HIV are not representative of local Mr or Ms average. We tend
to be within small, tightly-defined groups, often isolated by stigma
from the community at large around us.
And yet, patient power and representation is more of a necessity
than ever for people with HIV in these fragmented times. As we sit
here writing this, a reader phones up; HIV negative pregnant wife
of positive husband with low CD4 count. She has nasty viral symptoms,
worried for husband, GP refers to A&E. |
