The Ongoing Struggle to Help Those with HIV/AIDS in Wales

HIV charities apparently shake their heads in disbelief when talking about Wales because our record on tackling HIV is so poor.
This is despite the fact new cases of HIV in Wales rose by 13% year-on-year in 2006.
Tyddyn Bach in Penmaenmawr is one of only two non-medical HIV respite centres in the U.K. It’s something to be proud of, but in reality they are always struggling to stay open as the centre doesn’t get a single penny of funding from the local health boards or the Welsh Assembly.
As a result, all the people who use the centre are from across the border, where they can get funding for much needed respite care.
Over the past three years only two people with HIV from Wales have been able to use Tyddyn Bach – and they had to foot the bill themselves.
Philip Kearton-Smith, Manager of Tyddyn Bach, doesn’t try to hide his frustration: “People who are involved with HIV charities or health boards outside Wales always say to me: ’Don’t talk to me about Wales.’ Wales seems to be in denial about HIV and AIDS. The attitude is that ignorance is bliss. We do HIV awareness workshops in local schools and sometimes it really is quite frightening when talking to some of the young people. It seems some believe HIV can be caught after sitting on a dirty toilet seat, and that pills can be taken to make a HIV+ person free of the disease! A lot of people don’t have a real understanding of the condition. Overall, sexual health in Wales is very poor; and what does Conwy do? It closes down all the young people’s sexual health clinics! If somebody is diagnosed as HIV+ in Wales, there is just no support for them unless they live in Cardiff. We don’t receive any statutory funding and because it’s not a disease like cancer or diabetes, people will not take a stand and fight for help as there’s so much of a stigma surrounding HIV and AIDS,” added Philip.
“There’s just no help for people with the disease in North Wales apart from their GPs. Even a support service called Body Positive North West has moved from Chester to Crewe, so it can be incredibly isolating for people living with the disease. It’s a terrible shame that more people from Wales can’t come here, as Tyddyn Bach is very much about living with HIV and not dying with it.”
Philip says that Tyddyn Bach empowers families and individuals living with HIV to lead an active, optimistic life rather than becoming trapped in depression where life appears to be rolling out of control.
“In Wales, whilst medication for HIV continues to improve dramatically, there’s very little on offer to improve the emotional side,” he continued.
“There are a lot of people feeling isolated and lonely because they are being neglected by the health services.”
However, Wyn Thomas, chief executive of Conwy Local Health Board, said there are services available for those infected with HIV.
“We have only been given one referral to Tyddyn Bach in the last four years from somebody who had HIV in North Wales. There have been a couple of other referrals from other parts of Wales, but it would be up to the patient’s own local health board to fund any possible respite care,” he said.
A Conwy and Denbighshire Health Trust spokeswoman added: “The Trust provides excellent medical care, counselling, support and advice to patients who are HIV+ via clinics in Ysbyty Glan Clwyd and Wrexham Maelor. Anyone seeking help and advice can access these clinics in person or by phone. Further support is provided by Body Support Cheshire and North Wales, who have just received a lottery grant to help increase service provision in North Wales.”

Volunteers Needed

VOLUNTEERS are desperately needed to help out at Tyddyn Bach Trust HIV/AIDS respite centre.

Tyddyn Bach Trust in Penmaenmawr needs six new volunteers to keep up with the demand for their services as numbers attending respite breaks at the centre steps up to hundreds per year.

Tyddyn Bach provides care and respite for those affected by HIV and Aids, both sufferers and carers, and in the past was awarded the group prize in the Wales Volunteers of the Year Awards, sponsored by the Wales Council for Voluntary Action.

Centre manager Philip Kearton Smith was keen to point out the centre is not somewhere people come to die, nor we a ‘care home’. Philip says: “Those that visit us need space and time to recuperate and rest, as well as often needing gentle emotional support, just as anyone who is affected by a life-debilitating illness would do; our present team of dedicated volunteers are here as simply friends.
“However, we just simply don’t have enough volunteers to go round, over past months many have gained enough confidence to return to full-time work and unfortunately don’t have the time to come up and help out as they used to.”

Volunteers are needed to help not only with befriending but equally house maintenance, sleepovers, fundraising as well as assistance keeping its one and a half acre garden under control. Anything from a few hours a week to one day a week would be ideal.

Anyone that is retired or unemployed would be very welcome and they don’t need any previous experience as Tyddyn Bach will carry out any training needed.

Tyddyn Bach receives no statutory funding and relies totally on grants and donations for its upkeep. If you would like to find out more about the work they do, or would like to make a donation visit tyddynbachtrust.co.uk
For more information about volunteering at the centre call 01492 623322.

What Do You Need

What Do You Need – a health, social care and information needs assessment of people with diagnosed HIV in the UK

This summer Sigma Research are running one of the largest surveys of the social care, support and information needs of people living with HIV in the world. The survey is called What Do You Need? The findings should inform service developments as well as feeding directly into the development of a national Living Well framework for people with HIV in the UK. Sigma Research has been commissioned to undertake the survey and co-ordinate the development of the framework by the Terrence Higgins Trust.

The survey is open to all people living with HIV over
16 years of age and can be filled out either online at { HYPERLINK “http://www.WhatDoYouNeed.org.uk” } www.WhatDoYouNeed.org.uk or by a self-complete booklet which will be available at HIV and social care organizations throughout June, July and August 2007. It’s available in English and French, is completely anonymous and will take about 20 minutes to complete.

The participation of people from all backgrounds is essential to the survey’s success. If you are a person living with HIV, this is your chance to make sure that your voice is heard and that your experience influences future services.