I was saddened by Andrew Nield’s letter (‘Why are we treated this
way?’, PN 123, June). My experience at my HIV clinic has been nothing
but enlightening.
I was diagnosed nearly four years ago and had a wide choice of support. I
stayed with my local GUM clinic at Hertford County Hospital where I’ve
always found staff sympathetic and supportive. Over the last 18 months my
ability to maintain a strong immune system has declined, made worse by the
recent and sudden death of my partner, Ian. Of all places, it was the GUM
clinic I turned to for help and the staff were remarkable. Even my GP was
supportive.
If you are unhappy with your current clinic, talk to the practice manager,
or if that fails, seek another provider. Focus not on being HIV positive but
on living your life as fully as you can. Don’t feel sorry for yourself.
Get out, meet new people, get a hobby. Do something positive with your life;
it’s not over yet.
Richard Napier-Kemp, Herts
I felt compelled to write after reading Andrew Nield’s letter. I find
it hard to stomach people who choose the victim mentality he describes and
who refuse to take responsibility for their life, actions, and behaviour.
Following my HIV diagnosis, I returned from living overseas 11 years ago due
to the fantastic treatment, support and acceptance in this country for people
living with HIV. These are sadly lacking in other places. How many other countries
provide for people with HIV the way we do in the UK? I’m cared for by
a dedicated, skilled and empathic team to whom I undoubtedly owe my life.
Generally speaking, people with HIV here get free, top quality treatment.
Many have been rehoused as a priority, get generous benefits from the State,
have their rent and council tax paid, drive Motability cars and enjoy free
complementary treatments. Perhaps those who adopt this ‘poor me’
philosophy would do well to spend a few minutes a day practising being grateful
and taking time to reflect on how lucky they are as they take their meds,
run their bath and eat their nutritious, cheap meals. And they may also reflect
on the millions destined to die prematurely and traumatically from Aids through
lack of treatment and lack of food.
Nick Chapman, Brighton
In your article More Than A Pretty Face (PN 123), you referred to ‘Chelwest
+ve Patient Forum’. It’s actually called the KVN Forum, after
the Kobler, Victoria and Nkosi Johnson clinics. The contact email address
should be p.foster@mac.com. The KVN Forum also operate an online forum and
a website www.kvnforum.net.
As a member of a fledgling patient forum, we could use all the help we can
get in getting the word out, as we want as many patients to know about it
as possible.
Christian Decle, KVN Forum Member
I was disheartened to read George Rodgers’ letter (‘..and dissing
doctors’, PN 122, May) commenting on an article about ‘finding
doctor right’. I’m in no doubt the rapport and relationship between
the patient and their doctor is crucial to the success of HAART and a person’s
subsequent well-being. Sadly, spending time to listen to
a patient’s concerns and opinions is not something learnt by all doctors.
I wonder whether we, as a profession, have been hijacked by the various imperatives
inflicted upon us by the NHS, and other governing bodies have distracted us
from the first priority: our patients. I feel guidelines and hospital policies
are being adhered to far too slavishly, and this sometimes results in a lack
of flexibility in prescribing drugs and treating patients as individuals whose
therapy should be tailored individually. My advice to George is to ask his
friends who have HIV what sort of doctor they see and whether their style,
approach and personality might suit him better. Do a little research, shop
around, and then change your clinic.
Dr Steve Ash, Consultant, Ealing Hospital
Thanks for the good work you are doing on information development and sharing
through Positive Nation. Please put the Positive Men’s Union (POMU)
onto your mailing list so our members can improve their knowledge on HIV/Aids-related
treatment, care and support.
POMU was founded in 1993 by eight HIV positive men as a peer-support group
for men living with HIV. Only two of the original members are still alive
but the struggle continues. We are now a non-governmental organisation with
chapters pin 15 districts in Uganda.
The Aids Support Organisation (TASO), that has always been behind our successes,
recently donated an office with furniture and a computer. But TASO can’t
provide everything so we need partners like yourselves
to achieve our goals including the scale-up of men’s involvement prevention,
care
and support.
Richard Serunkuuma, The Positive Men’s Union (POMU), Kampala,
Uganda
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