Respite Centre Ignored

THE attitude towards HIV and Aids in North Wales is one of ignorance.

That is the opinion of Philip Kearton Smith, pictured, manager at Penmaenmawr’s Tyddyn Bach respite centre, who says HIV charities shake their heads in disbelief when talking about Wales because our record on tackling the disease is so poor.

Wales’s only HIV and Aids respite centre has only been used by a Welsh sufferer twice since 2004 because it gets no statutory funding from either Westminster or Cardiff. Only English health authorities fund patients to visit Tyddyn Bach.

This is despite the fact new cases of HIV in Wales rose by 13% in 2006.

Philip said: “Local health boards across Wales aren’t interested. I’ve rung each one of them to tell them what we do in this centre and I was even met with giggles down the phone with one health board in Mid Wales.

“Only Swansea and Cardiff seem to get what we do. Conwy County Council is totally clueless about our work, I’ve received quite a few calls from various departments in the authority and it soon becomes apparent they think we are either an old people’s home or a hospice.

“We’ve been here 10 years now and around 200 people with HIV come from England every year for respite because their health boards understand what we offer, they have funding for respite care.

“There are over 1,000 people with HIV in Wales and they are alone. Many face prejudice and most go to clinics in Manchester, Liverpool or London to get treatment because it’s better and they can be totally anonymous there,” he added.

“The health boards don’t tell people about us so when we ask them for funding they simply say there is no need for such a service because nobody has asked for it, but that’s because people don’t know we exist!

“When I contact the Welsh Assembly I just get sent back to health boards, it’s a ludicrous merry-go-round and we’ve almost given up on Wales.”

Mark Isherwood, Assembly Member for North Wales, has written to Edwina Hart, the health minister, concerning the problem. Mark has requested the minister take action and to also visit Tyddyn Bach when she’s next in North Wales to discover what the centre offers.

He said: “Tyddyn Bach is an award-winning respite centre and it is vital to ensure people with HIV/Aids and their carers can access those services in Wales.

“I hope the minister can take action and overcome the barriers that have ensured that, to date, virtually all of the centre’s clients are from England. Almost none of its clients are from Wales.”

Health Minister Promises Visit to Penmaenmawr Centre

AFTER years of successive Welsh health ministers saying they were too busy to visit the HIV respite centre in Penmaenmawr, the present minister has finally promised a visit.

The award-winning Tyddyn Bach, which celebrated its 10th anniversary last year, provides respite care for people and their families living with HIV and Aids.

Unfortunately, Wales’ only HIV respite centre has only been used by a Welsh sufferer twice since 2004 because it gets no statutory funding from either Westminster or Cardiff. Only English health authorities fund patients to visit Tyddyn Bach.

Philip Kearton-Smith, the manager at Tyddyn Bach, hopes a visit from Edwina Hart will change this.

He said: “I’m very pleased she has agreed to a visit, we’ve been trying for years to get ministers from Cardiff here but it seems we might as well be on the moon.

“I’ve been passed from pillar to post in the past so this is great news. I’d like to thank Mark Isherwood AM, who is a great friend of Tyddyn Bach, who invited the minister.

“We’ve also in the past invited Conwy County Council’s chief executive Derek Barker on quite a few occasions, but again we are always told he’s too busy, and never offers to send anyone else instead.

“I think when Mrs Hart visits she’ll get a feel of what we do and hopefully be impressed enough to give us some funding in the future,” he added. “It seemed that in the past, during election time, ministers would promise to move mountains for us and then we’d quickly be forgotten about after the election.”

Even the BBC is taking up Tyddyn Bach’s cause after spotting an article in the Weekly News. Radio 4 has been to the centre and interviewed Philip and users of the centre and the results appeared on the station’s You and Yours programme.

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” } http://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.

Grant Award for Respite Therapy

WALES’ only HIV/Aids respite centre is celebrating after receiving a £15,000 grant from the Assembly.

The money will be used to provide a gym, alternative therapy treatment area and shower facility which will be open to the local community as well as guests of Tyddyn Bach in Penmaenmawr.

The grant is being awarded by the Welsh Assembly’s Active Lifestyle Fund which is an initiative to help create new or improved physical activity opportunities through which mass participation can be achieved.

Centre manager Philip Kearton-Smith is eagerly anticipating the huge difference the money will make: “We are thrilled to receive this money and really pleased to be able to offer these new facilities to our guests as well as members of the local area.

“Being able to provide these extra amenities gives Tyddyn Bach a fantastic boost and guests are already eagerly anticipating the difference it will make to their stay. We are also looking forward to welcoming people from our community here too.”

Centre Manager Nominated for Person of the Year

The manager of a unique HIV / A.I.D.S respite center has been nominated for all the work he has put in, with little help from funding authorities.
Tyddyn Bach in Penmaenmawr is now the only respite centre of its kind in the U.K providing supported respite breaks for individuals their families and carers affected by HIV & A.I.D.S.
Despite its unique much needed role it is unable to attract any form of statutory funding and has to rely on the dedication of its manager and loyal team volunteers to keep going along with it’s own determined fundraising efforts.
Manager Philip Kearton-Smith works tirelessly to ensure guests to Tyddyn Bach get the care and support they deserve with a determination to get the centre recognised for the unique services it continue to develop.
Nominator Mr Glyn Davies believes nobody is more well deserving of recognition than Philip. “He is one of the nicest people I have ever met. Nothing is too much trouble for him and he is always there for people.
Philip was delighted with his nomination: People have seen a lot of work done here but there is so much more to to do. We are winning the battle against stigma & prejudice but sadly we never seem to get the big funding break we so need. Tyddyn Bach is about people and we are here, focused to tailor our services according to individual needs, treatng each guest as a whole and not just a number, frustratingly though this sincere approach seems old hat now and therefore funds continue to be thin in coming forward.
Tyddyn Bach last year was voted National Overal Winner of the United Kingdom Coalition, Hero’s of the Year Award as well as Overal winner of the W.C.V.A Group of the Year Award.

Walking to Raise Funds and Awareness

Combining a good walk with a pub crawl helped raise £582 for local HIV/AIDS charity Tyddyn Bach Trust. The Llandudno Cricket Club Taverners set off from Tyddyn Bach, Penmaenmawr after a hearty breakfast of bacon sandwiches.

Their walk, which took in a multitude of pubs, finished in Llandudno and saw the Taverners raising money by both collection tins and sponsorship.

Taverner, Colin Edwards, who helped organise the event was delighted with the response from people as they traipsed through towns and villages.

“The Taverners cricket team recognise that local charities desperately need support. As a unique much needed facility Tyddyn Bach needs all the support it can get to keep going. We are very please to be able to help by the 12 mile walk.”

Tyddyn Bach Trust was set up in 1997 to provide a social respite centre for all those affected by HIV and AIDS, including family and friends. Since that time over 2,000 men, women and children have stayed at the centre receiving much needed respite and support.

Tyddyn Bach Manager and Volunteer Co-ordinator, Philip Kearton Smith congratulated the Taverners on their fundraising efforts.

“As a self funding charity we are always very grateful for any money that we receive. The Llandudno Cricket Club Taverners have done a fantastic job, both in terms of raising money and handing out leaflets on our behalf. The money they have raised will go towards our new disabled shower room, which is desperately needed.

“HIV and AIDS not only affects those who are diagnosed with the virus but their family and friends too, it affects everyone, despite the myths. As the only such social respite centre in the country we offer a sanctuary away from the stigma and prejudice that unfortunately are still associated with the virus.”

Tyddyn Bach Helps Out As Even More Services Are Lost to North Wales

HIV & AIDS social respite centre, Tyddyn Bach Trust are stepping in to help North Wales HIV/AIDS patients as they once more lose out to vital services.

The North Wales and Cheshire branch of Body Positive has been forced to withdraw their mobile alternative therapy facility due to lack of funding from North Wales Health Trusts. Body Positive, a service whose aim is to help those affected with HIV & AIDS, had been using money earmarked for service users from neighbouring Cheshire to subsidise those affected in North Wales. However, after 10 years of subsidies Cheshire Health Authority has finally said enough is enough and North Wales must stand alone. Despite pleas to gain funding from other sources Body Positive have now been left with no alternative but to withdraw all services to North Wales.

On hearing of that people were being left high and dry Philip Kearton-Smith, Manager of Tyddyn Bach, immediately promised to try and come up with the cash to fund existing clients in the short term so they can continue with their much needed treatment.

“We know how crucial it is for people to receive this kind of treatment and are trying our utmost to help existing clients as part of our ongoing commitment to the community.” Says Mr Kearton-Smith. “Unfortunately, even if we can come up with the money it just means that other projects will be have to be delayed.”

“It’s so important that people continue to receive this service as it’s not just the actual treatment that people benefit from, it’s also the fact that the therapist is someone to talk to, get support from and break the circle of isolation.

“When you are alone with an illness such as this, sometimes one understanding person can make a tremendous difference. By effectively taking this person away you once more leave the individual feeling alone and desolate.”

One grateful service user, who didn’t want to be named, contacted Mr Kearton-Smith, saying: “I just wanted to say thank you for trying to help and for realising how important this is to us. People do benefit from reflexology, so thank you.”

People’s desire for anonymity is synonymous with HIV & AIDS due to the fear and prejudice which still surrounds the virus. This makes it even harder to secure funding in the first place as Mr Kearton-Smith explains:

“Unfortunately there is a catch 22 situation when any service for people with HIV or AIDS is lost. Because of the stigma and prejudice that goes alongside the virus people need support discreetly and won’t make a fuss to the relevant authorities when services like these are withdrawn.

“However, by not making a fuss the services are effectively allowed to just disappear. Then when you apply for funding to provide a much needed service you are informed that statistics show there isn’t a need as the people don’t exist!”

Manager of Cheshire and North Wales Body Positive, Sean Hood, totally agrees, he says:

“It’s a big relief knowing that the Tyddyn Bach Trust can continue to support this service, if only for existing clients. We know that if you suffer from HIV or AIDS you can really benefit from receiving therapies such as reflexology and aromatherapy. Most people are on very strong medication and really look forward to their treatment so they can just relax and try to forget their illness even for just one hour.”

Mr Hood continues: “While we are very aware of how much the people of North Wales need these treatments they will not come forward on an official level to say so. The stigma surrounding HIV & AIDS, especially within the smaller villages stops people speaking out.

“The worst thing is that if you have HIV or AIDS and live in either Swansea or Cardiff you’d be able to access all types of services. People in North Wales are losing out. It’s yet another service that’s been effectively lost for the people of North Wales.”

Despite being turned down for top up funding from the Elton John AIDS Foundation, Mr Hood now hoping that an outline proposal which has been agreed by Lottery funding can be turned into a successful bid.

“We are really hoping the Lottery can help us.”