|You and Yours - Transcript
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|TX: 16.01.08 - HIV Care
PRESENTER: SHEILA MCCLENNON
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When we first started our series on care we got an e-mail from a listener with HIV who said thanks for looking at these issues but do broaden it beyond older people, there are many young people who have to fight for social care and support. Well we turn today to those with HIV and AIDS, despite there being a number of support networks up and down the country, in England and Wales there's only one respite care centre where those with the condition and their families can go for a break. Tyddyn Bach, overlooking the Menai Straits, on the edge of Snowdonia has just celebrated its 10th anniversary and Stuart Robinson has been to look round.
This is the main sort of guest lounge. They've got TV, they've got satellite television, the video - they're very well pampered. A beautiful view of the sea. Voluptuous sort of sofas in here, so they can rest and just lounge about as they want, it's home from home.
Philip Kearton-Smith, the centre manager showing me around a large Victorian house with more of a hotel feel than a clinic. At this time of year it's quiet but this residential respite centre for those with HIV and AIDS, their carers and families, can take a maximum of 14 people.
With now 75,000 people known to be positive in the United Kingdom and with improvements in medication a lot of the physical symptoms of HIV are now being kept very much at bay but the emotional aspect of being positive is not being really dealt with at all and that's where we come into being, that is our purpose.
This is my room, room number 2 and a very comfortable room with a nice sea view, very relaxing, with my own telly, video and own fridge and very comfortable indeed.
This is Tommy, originally from Gibraltar and now living in Manchester. He's been HIV positive for 17 years. He says that thanks to Tyddyn Bach his emotional state has considerably improved since his first visit three years ago.
I was ready to die, I was never going - doctors had told me that I'd never walk again and I was - I became old, incontinent, I was in a very, very severe way and yeah obviously I really thought I was on my way of dying.
And what does it mean to you to come here?
For me it means everything in world, it's - well it's happiness and determination and it's giving me this place and they do look out for you and they take you through the right direction.
Put the cherries in.
Considerable care is taken with food, making flapjacks here is the cook Sharon Boomham.
We do try and - well I personally try and sort of just make everyone feel like they're normal and there's nothing wrong because you know they have so much to cope with in normal life, so we just try and make them feel as welcome as possible. Some people obviously need to have special diets and quite often we have people who come and need to put weight on while they're here, so I like to get them to weigh themselves first - it's just a sort of bit of fun really, it's not a rigid thing or anything - just so they can say when they go home I've put a bit on, you know and it helps them and it gets them back into the habit of eating regularly so they can hopefully continue it when they go home.
When it comes to running the centre there's no statutory funding, a quarter of the costs, as much as £1500 a week, are covered by grants. The rest of the income is drawn from respite fees and fundraising. For most of the year it costs £450 a week per person with reduced rates for carers and families. Most guests have to be referred by social services but Philip Kearton-Smith has noticed a change in sources of funding.
I've been here five years and over those five years the funding of a stay here is being farmed out more to charities than it is within the local authority. There just doesn't seem to be the money there anymore, it's being spent on other things.
According to Babs Evans from the Elton John AIDS Foundation this type of respite care is not being given the backing it deserves. For guests actually getting funding can depend on where they live.
It can be really difficult for people because they have to be funded in the area where they live and so some places have money available to support people to go to a place like Tyddyn Bach and others don't and there's this real postcode lottery about that. It can depend on the number of people they're supporting and how the money's allocated and sometimes the emotional aspect of living with HIV isn't given the same priority as the cost of treatment and the more practical aspects of it.
But Paul Ward, from the Terrence Higgins Trust, says that nowadays those with HIV and AIDS can find emotional support in other ways.
What we tend to find at Terrence Higgins Trust is that increasingly people prefer to get emotional support services either by speaking to somebody over the telephone or by sort of coming in and seeing a counsellor on a - in a one-to-one consultation or indeed increasingly over the internet. We find that there aren't that many people in many of the parts of the UK where THT works who want to come into a centre and spend some time within that centre. And that's very much a reflection on how needs are changing - increasing numbers of people with HIV now are sort of having families and sort of bringing up children, increasing numbers of people with HIV are working either full-time or part-time. And that therefore means that people have got different things going on in their lives than they did maybe 10 years ago.
The drops are meant to bring down the inflammation in the eye because I've got toxoplasma at the moment.
And how often do you have to take it?
On the hour.
Steven is taking a regular and apparently constantly changing source of medication to help him cope with being HIV positive. For him staying at Tyddyn Bach is a chance to get away from living with the stigma associated with AIDS and HIV.
It's a break and just for you to be yourself and not to have to keep your guard because I've found that I've had to tell fibs about my condition and it's - you know there's still so much stigma attached with HIV. Here is like a haven.
So do you have to keep your guard in say your home town?
Yeah. The only people that know are my parents and close family and they've just been absolutely amazing, my mum is... I have got the best mum in the world.
We have a lot of people that come here that have said they've had problems with neighbours, we've had one or two that have had bricks thrown through their windows, things scrawled on the doors. The whole thing of stigma is a very sort of eroding process and it's at many different levels. So when they come to - as here at Tyddyn Bach - and I meet them at the station and you shake your hand and I'm hugging - I hug them when they're leaving and we're interacting and making each other cups of tea, it's a huge relief for a lot of people that they're actually again being treated as an individual and not almost a leper.
The Terrence Higgins Trust survey from 2007 identifies that a third of people with HIV who we spoke to had had - experienced discrimination at the hands of people working in the NHS and in local government. And we think that's unacceptable and that there is more that needs to be done to educate people working in public services about HIV and also about how to treat people who have got every right, as much of a right to a service as anybody else.
Meanwhile back at Tyddyn Bach it is clear that the emotional support is important to Steven and also Joan from Tobago.
You need somewhere where you can speak freely with other people in the same boat as you basically.
It is very nice, very friendly - the people are friendly and the place is very quiet. I like the beach and everything and they love me.
Joan and others at Tyddyn Bach talking to Stuart Robinson.
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