Chair: Robert Kincaid
Rapporteur: Peter Noble, NLTSG
Prior to the conference participants were asked for suggestions for workshops or meetings and space was kept on the programme and at the venue to allow for these additional sessions. Some people from Scotland asked for a meeting for Scottish participants and19 people attended.
Participants set their own agenda for this meeting and began by making a list of concerns for people in Scotland:
Health is a devolved issue
Scottish Strategy for HIV & Blood Bourne Viruses
Representation of people living with HIV (in/by HIV Scotland and other agencies)?
Funding issues (seems to be comparatively less available than in England)
Community Housing for people with HIV (and perhaps similar diseases) as housing is an important issue for many people, and the support of like minded people around would be valued
Difficulties in accessing alternative therapies
Staying clean in Scotland
Patient Groups , Living Well Groups , Health Citizenship groups have been established around these concepts in England but not in Scotland as far as we knew
Involving everyone in outlying areas of Scotland not just people in Edinburgh/Glasgow
Access to HIV Drugs for people without status
Young people and HIV
Life Coaches
Rural issues (the need for networking and including urban organisations)
Emotional support (particularly for people with dementia)
Supervision for volunteers
People should live with HIV, not have a life of HIV. This was making the point that lots of people did loads of work volunteering or working in HIV field, but it was time to have a life outside of HIV now that the prospects for a long life were so good.
Working with other patient groups
Having a meaningful network of Scottish people
Holding a Scottish conference
Those present decided to make a commitment to form a network of Scottish people living with HIV. A list of names was passed around and 14 people signed up. A future date for a meeting will be set. The group decided on the following aims:
Investigate ways for people living in Scotland to network and communicate via the Internet
Approach HIV Scotland for funding to provide skills and training for people living with HIV to be able to join the board of HIV Scotland and other agencies
Formulate a plan of action
Use documents like the strategies to advantage
Investigate ways to provide support to immigrants when attending hearings (decisions made in Westminster have an effect on Scottish Parliament Acts)
Ask NAT to review policies around immigration with regard to Scotland
Set up a Scottish all party parliamentary group based on the English model
There should be more campaigning in Scotland to combat isolation and stigma
There should be more training for doctors and nurses working in Scotland
Asylum seekers are worried about disclosure, feel frightened and scared and have many cultural differences. Racism is quite rife in some parts of Scotland, and there has been one murder of an asylum seeker in Glasgow
Disclosure is still an issue for everyone, especially for parents/grandparents wanting to talk to children
Those present decided to make a commitment to form a network of Scottish people living with HIV
Action points for people attending from Scotland were set at this meeting
Asylum seekers are worried about racism and access to treatment in Scotland
People living with HIV in urban areas should assist those farther flung.
There should be more emotional support for people living with HIV and supervision for volunteers.
Links should be made with other organisations of and for people with similar chronic health conditions to provide appropriate support, services and housing.
This workshop was evaluated by 8 people between the ages of 35 and 45 (average age 40).
Of those evaluating this meeting the following areas were represented:
Edinburgh |
Dundee |
Glasgow |
Aberdeen |
50% |
25% |
12.5% |
12.5% |
Gender
5 male, 3 female
Ethnicity
4 white, 2 not stated, 1 black African, 1 other non-white
Sexuality
7 heterosexual, 1gay
Usefulness
Very useful |
Useful |
Not useful |
100%(8) |
0% (0) |
0% (0) |
NOBODY said not useful
6 people set themselves action points
Create structures/events to facilitate involvement
Scottish network meeting (recognition)
Get involved in networking
Commitment to network of pos people in Scotland
Hoping to network and get involved
Networking
Rapporteur’s feedback:
I was proud to attend both Scottish meetings, and to see people living with HIV taking control, forming a plan of action and identifying issues. Congratulations all of you who attended
Move on to Welsh Participants Meeting