Chair: Stephen Bitti, UKC
Rapporteur: Lucy Osman, PW
This meeting was held at the request of participants from Wales and was attended by 7 people.A pre-session debate was held and David Lynch, who represented THT Cymru, was asked to step outside. Discussion included:
That other representatives from THT Cymru were not present – it was felt this was perhaps because they may not have been comfortable in discussions with their boss present
David’s knowledge would be useful especially about commissioning in Wales and he should be present at the meeting
The agenda should be set by participants and facilitators should take a back seat
David was invited back to the meeting and the following issues were raised and discussed
The number of people living with HIV in Wales is small, probably close to 1000 people (600 of these accessing services)
Co-infection figures are unavailable
Newport, Cardiff, Swansea and Wrexham are dispersal centres for asylum seekers
There is ignorance about HIV, homophobia and paranoia
Despite the disadvantages, participants said that Wales was still their preferred place to live
There has been concern about racism from clinicians
Consultants have been known to disclose too much identifiable information in small communities, and are not used to accountability
There have been negative media stories about gay men sexually active in picnic areas
There is a lack of awareness and information outside Swansea/Cardiff
Some were shocked about this, especially as other participants had had different experiences at the same clinic (participants queried why there had been a lack of local advocacy offered to the individual)
Some people who were receiving support from Cardiff AIDS Helpline (CAH) feel dumped since the merger with THT, especially those who were attending groups set up for families of people living with HIV
North Wales services are very poor and people travel to Liverpool, Manchester and even to London
Testing centres are inaccessible and miles away from many people
Antenatal testing started later in Wales
Out of hours services would be useful (i.e. for blood tests) especially for people who work. The issue was bought up by the sexual health review and taken to Welsh assembly - a change in GUM hours is expected
It was felt there had been a lack of communication with existing services users about CAH’s merger with THT
There was a gap in the dissemination of information especially about the provision of services, for example up-coming workshops (putting dates on the THT website was thought to be one easy solution)
There are men’s groups but again there is a lack of communication and advertising
There is a lack of a good magazine in Wales
People in Wales did not necessarily know about Positive Nation because it is not available in most clinics and not enough copies are provided
People may not be aware that Positive Nation, AIDS Treatment Update and other newsletters can be delivered to people living with HIV free of charge to an address of their choosing
HIV publications are only currently available in places where it is known that people attending are HIV positive
All those attending were from South Wales and concern was expressed about whether HIV organisations and clinics in Wales had promoted the conference to people in North Wales
It is important to have a process of advertising groups then reminding and prompting participation
Patient and Public Involvement Forums are useful in this area
Some Welsh voluntary sector organisations may find it difficult to be too critical because of reliance on statutory funding
UK wide organisations can support local organisations and individuals with advocacy and policy work
There will be an all Wales meeting to explore:
Patient network idea
National network
THT strategy is more around advocacy and treatments however space can be made for groups. Transition periods can be slow
The numbers of people living with HIV in Wales is only around 1000 and many attend clinics outside Wales
Services, information and resources are largely available in Swansea and Cardiff only
Participants agreed to meet up afterwards to discuss a Peer Patient Forum in GUM clinics
Information and resources about HIV should be more widely disseminated in Wales
HIV agencies and health care providers should promote and facilitate more PPI of people living with HIV in Wales
This workshop was evaluated by 5 people between the ages of 28 and 48 (average age 39).
Gender
3 male, 2 female
Ethnicity
4 white, 1 not stated
Sexuality
3 gay, 2 heterosexual
Usefulness
Very useful |
Useful |
Not useful |
100%(5) |
0% (0) |
0% (0) |
NOBODY said not useful
All those evaluating this meeting set themselves action points:
Advocate and attend follow up meeting
Re-established communication with THT and Positive Tongue
Keep in touch as routes to involvement emerge
Get more involved
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