Are we managing?
In response to the reader’s encounter with HIV support agencies’
use of the phrase “a manageable condition” [PN 114, August], I
encountered the same erroneous description when a Radio 4 presenter compared
living with HIV to living with Type 2 diabetes. I ask of these comfort-seeking
deniers how many diabetics have participated in drug trials? In the 11 years
since my diagnosis I have suffered from severe anemia and damaged kidneys
caused by a series of new protease inhibitors, leading to life-threatening
side effects. Having survived that, I was soon diagnosed with PML, an Aids-defining
illness.
The Department of Health must face up to reality and identify HIV/Aids as
a progressive sexually transmitted infection. Political correctness in these
instances can only distort a very uncomfortable reality.
PIERRE MONTOCCHIO, BRIGHTON
Not just for Christmas
There’s no doubt that living with an animal can have a positive effect
on an individual or family. However, I found the article by Martin Flynn [Treatment
News, PN 113, June/July 2005] ignored the amount of care required in looking
after animals. Terms like, “...if a cat seems too much even a house
plant can help” do not reflect the amount of consideration one should
give before taking on-board an animal. Living with an animal is a two-way
relationship. By all means, give a home to an animal, but only if that home
can offer a safe, loving and long-term environment. There are thousands of
‘rescue’ dogs, cats and other animals that are in need of a good
home and I encourage anyone getting an animal to offer one to a rescue animal.
GARRY, ESSEX
You keep me hanging on…
Have you tried to get an appointment at the Victoria Clinic lately? It has
introduced a call queuing system charged at the 0845 rate. If you call from
a mobile you will need a second mortgage, and the person who answers is the
clinic receptionist. So as well as serving at the counter and helping in the
clinic they have to answer the phone, which inevitably takes a back seat.
I called today for an appointment and was on hold for 23 minutes. When my
call was answered I was asked to “hold” and then cut off. It’s
stressful enough living with HIV without the added stress of not being able
to book an appointment with your doctor. It’s disgraceful that the clinic
should be making money out of people who are sick and need sexual health advice.
PAOLO, VC CUSTOMER, LONDON
The Victoria Clinic responds: We are very sorry this gentleman had to wait
so long for his call to be answered. Making sure people have quick access
to our services is very important to us and we will be investigating his concerns
further. The Trust does not make any money from the telephone service provided.
People calling the 0845 number from a landline are charged at a local rate
and those calling from a mobile are charged at rates determined by their mobile
phone provider. The Trust is making improvements to the telephone system and
developing a new call centre which will provide a service to all of the hospital’s
sexual health clinics. We are also employing additional operators which, together
with the new call centre, will speed up response times.
Fight the good fight
I’m writing in response to the letter entitled ‘Millionaire’s
home but no fresh veg’ [PN 113]. I can assure the writer, as a former
‘campaigner’ myself, that many people are still fighting the good
fight, but most have moved on to ‘doing’: providing practical
support and running services instead of going crazy at council meetings. An
active approach could also solve his transfer problem. The HOMES mobility
scheme enables disabled people who need to move for medical reasons to get
appropriate housing in a new area. HOMES also run the national ‘swap’
scheme, which enables you to bypass the bureaucrats. I used it to move to
a wonderful house in Wandsworth from a tiny flat in Surrey. We’re all
different, but I can’t help feeling that a more optimistic outlook can
solve more problems than entrenched, extended battles. Info on both schemes
are available at www.homes.org.uk.
NAME AND ADDRESS SUPPLIED
Top tips
I was touched by the plight of you reader who wrote the letter, ‘Millionaire’s
home...’ [PN 113] I am an occupational therapist and also run a voluntary
service for people affected by HIV. It’s a minefield trying to get rehoused
and social and voluntary services have neither the dedication or resources
to assist people
properly. I would like to offer some tips:
1. If you have a good relationship with a doctor, retain
them even if they move to another area. They are crucial in providing medical
evidence of the detriment housing can have on your health and well-being.
2. Request a community care assessment from Disability Social
Services. By law, they must conduct one. Request it in writing and copy it
to your MP or Councillor.
3. Follow up your concerns with social services with the
Lead Member for social services. You can get their details by ringing the
council.
4. Make contact with your local HIV group and use their advocacy
services.
5. Keep letters from healthcare professionals that demonstrate
the impact of the type and location of your home. The Office of the Deputy
Prime Minister has guidelines to be considered when allocating housing
to vulnerable clients including those affected by HIV. Visit www.odpm.gov.uk
6. From this year, all providers of goods and services, including
councils, have to make special provision for people affected by disability
and that includes HIV. If they do not they are breaking the law.
One more thing; phone calls do not help. Always put things in writing.
HANIF RAMZAN, LONDON
Mum’s the word
Thank you for the article Toddlers To Teens [PN114]. My daughter was
born at St Mary's six years ago, and both of us were well cared for by
Dr Hermione Lyall and the team there. Now, I almost take it for granted that
she is a healthy, bright child, and that I am the only one in our family living
with HIV. But it could have been different. The world desperately needs a
lot more Dr Lyalls. HIV transmission from mother to child can be prevented.
It is scandalous that so many children are being born infected with HIV. We
need to shout it much more loudly: this does not have to happen. It must not
happen.
CHRISTINE PATTERSON
Write to:
Letters, Positive Nation,
250 Kennington Lane,
London, SE11 5RD or email
editor@positivenation.co.uk
or fax 020 7564 2140.
Please include your address and phone number although these need not be published.
Letters may be edited for length. Views expressed in letters are not necessary
those of PN or the UKC
