Regarding the February
PN editorial: the Government does need to make the prospect of user involvement
within the NHS much more of an inspiring proposition. But I would by no means
consider the concept of 'Patient Power' to be boring, and I think you have taken
a particularly unfortunate and disempowering approach to this subject. The work
undertaken by patient groups in the Greenway Centre and in the Bloomsbury Clinic
(which I co-founded) has made an appreciable difference to the patients of both
clinics. People living with HIV should be urging each other to make our voices
heard. Let's encourage the DoH to make user involvement a more interesting prospect,
but please do not start by putting off a group of under-represented people by
telling them how 'boring' it is to be involved.
GARRY BROUGH, LONDON WC1
Patient Power 'boring'? Emphatically not! Your editorial made some valid individual
points, but as a whole was confused. I look forward to Positive Nation devoting
space to a more informative and coherent overview in a future issue. In the meantime,
I can strongly assure you and your readers that working with HIV clinics can get
good results, and that the process of doing so is rewarding and empowering.
PAUL CLIFT, PATIENTS' REPRESENTATIVE, LAWSON UNIT/EJC,
BRIGHTON
Further to the article in Positive Nation's December issue ('Helping
asylum seekers to get treatments'), I would like to clarify a few points.
All asylum seekers are entitled to free NHS services, though some aren't aware
that they are entitled. Asylum-seeker nursing mothers are also now entitled to
milk vouchers after a recent ruling. Those seeking 'exceptional leave to remain'
for a variety of reasons under Article Three of the European Convention on Human
Rights are also entitled to free NHS services, but sometimes are improperly refused.
It is only 'visitors' (including students) who are not entitled to free treatment
for HIV until they have been here 12 months. This has led to cases of pregnant
women testing positive, but then being told they can't even have the simple treatments
that would prevent them passing HIV to their unborn child. THT is campaigning
for humane and sensible exceptions to this 12-month rule.
LISA POWER, HEAD OF POLICY, CAMPAIGNS & RESEARCH, TERRENCE
HIGGINS TRUST
My friend John is helping me to write this letter because due to disability
I cannot write or read. I recently attended the Service Users' Forum at Lighthouse
West and found that due to the cost of refurbishing their café, food prices had
gone up and side vegetables disappeared. Food, apart from business, is also a
therapy - as important to people with HIV as massage, or acupuncture - and managers
of HIV charities should treat it that way. I'd like PN to write an article showing
food as therapy.
ELFRID WALKINGTREE, LONDON W10
I am not normally given to watching EastEnders, but was tipped off that tonight's
episode was worth watching. When HIV positive Mark Fowler goes to the clinic for
his latest test results, the consultant tells him his treatment is failing and
there is nothing more that can be done for him. Even if a patient really had failed
all of the normal/usual combinations, there are still new drugs around the corner.
In any case, no doctor would deliver news like that to his or her patient, and
if they did, would need taking out at dawn. This has to be one of the most badly
scripted moments in the history of soap and I hope that PN will be making a suitable
representation to the BBC.
MATTHEW YEOMANS, LONDON SE11
Having read 'The
Red Lights of Sonagachi' (PN December) I would like to tell you about our
HIV/Aids work in the red light areas of Mumbai (Bombay), where Social Activities
Integration (SAI) is crusading to eradicate the ignorance about HIV/Aids. We distribute
free condoms, provide counselling and free medical care for the commercial sex
workers; support the schooling of their children, and educate illiterate people
and the younger generation about Aids using street plays, puppet shows etc. Anyone
who wishes to support our work can contact me at vasta_sai@yahoo.co.in
VINAY VASTA, PRESIDENT, SAI, MUMBAI, INDIA
I have to thank you for a great variety of recently published articles and,
ooh, I almost felt included in a recent editorial ('How
we have failed gay men', PN November). But I still detect a hint of righteousness
towards those whose lives are differently ordered, or 'out of control' if you
insist.
DICK SPLASH, LONDON SE16
I have just found out about PN's personals section and thought it might be
nice to meet someone in the same situation. I responded to those adverts that
stated 'all letters answered with a photo'. Well, those advertisers should also
clearly state in their ads 'only cute guys need apply'! Even having a letter sent
back saying 'no thanks' would be nicer than being left feeling totally isolated
and worthless. The message I have received from the gay community all my life
is that you're on your own, mate. I guess the same can be applied to the HIV community
as well.
CHRIS COLLINS, BY EMAIL
