Wales Facilitators: David Lynch, THT Cymru and Sue Gardiner, Positive Tongue
Rapporteur: Althea Cribb, NAT
This workshop was attended by nine people. David Lynch opened the workshop by apologising to the participants for the lack of time allowed and expressed his wish that everyone attend the meeting the following morning designated for participants of the conference from Wales .
David handed out a report on the summary and recommendations from the first all Wales seminar (five years ago) aimed at and led by people living with HIV and AIDS, organised by THT Cymru and attended by people living with HIV, affected communities, voluntary/community policy makers and providers, local authority providers, commissioners and Welsh Assembly Members. This was held five years ago, and David told the group that (unfortunately) many of the points outlined in the report still stand today. There has been some progress made, but capacity needs to be built upon in order to improve the potential impact on decision makers.
For a more up to date idea of what has been happening, David then handed out the recommendations THT Cymru made to the Assembly when it decided to review its sexual health strategy six months ago. There will be a discussion on this very soon at the Assembly: they do accept that the current system is not working, but they do not look to the way other health conditions are dealt with for guidance. For example, if HIV were commissioned centrally, there would no longer be the disparity and inequality in services across Wales . However, although this is the most logical course of action it is impossible due to the nature of devolved local health authorities.
David’s third handout was an information sheet about how the Wales HIV Network Forum had included a ‘Positive Participation Group’ meeting, and that this was something THT Cymru were looking to take forward on a regular basis in order to include people living with HIV in Wales . He will notify participants of the dates and locations of upcoming meetings.
Sue Gardiner distributed an information sheet about Positive Tongue, a confidential member service for people living with HIV in Wales, working for the rights of all positive people to have equitable and accessible services and ensuring minimum standards of treatment and care throughout Wales. Positive Tongue currently has around 50 members. Positive Tongue has met with Assembly Members before, so does have a voice: however it is in need of more resources and people to improve the network, and fight against people’s isolation, stigma, and the inequity of treatment across Wales. David and Sue are working together on behalf of THT Cymru and Positive Tongue towards common goals.
A meeting was held at THT Cymru with Paul Ward ( THT ) and people living with HIV in Wales and David will shortly be distributing the report that he has written up of this meeting.
David highlighted how ‘patients’ often have much more of an impact on decision-makers in the health service than voluntary organisations, and this is why networks of positive people are essential and can make a real difference. He urged all the participants to contact him and Sue to involve themselves in the networks in Wales . Sue underlined this, also urging people to join Positive Tongue and to actively participate to improve the health service they receive.
Many of the recommendations from the all Wales seminar (held five years ago) have not been acted upon
The Welsh Assembly need to look at the way other conditions are dealt with for guidance
The Wales HIV Network Forum includes a ‘Positive Participation Group’
Organisations in Wales should aim to increase the number of people living with HIV involved in the planning and delivery of services
Organisations and individuals in Wales to form a group to work with and influence decision makers in the health service
Hold feedback events in North and South Wales for participants at the Changing Tomorrow conference to tell their stories, and what they gained from the conference
This workshop was evaluated by 6 people from Wales between the ages of 29 and 44 (average age 36). All of those evaluating this meeting were from South Wales .
Gender
3 male, 2 female, 1 not stated
Ethnicity
3 white, 1 black African, 2 not stated
Sexuality
3 gay, 2 heterosexual, 1 not stated
Usefulness
Very useful |
Useful |
Not useful |
17% (1) |
66% (4) |
17% (1) |
Help set up Wales-wide patient's forum
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