Chair: Sue Gardiner, Positive Tongue
Facilitators: Alice Welbourn, ICW and Paul Bateman, Birchgrove Group
Rapporteur: Allan Anderson, PW
This workshop was attended by 20 people and gave participants the chance to discuss the pros and cons of living in rural areas. After introductions the facilitators asked people to come up with their experiences of the advantages and disadvantages of living in a rural community. These were written on post-it notes, affixed to flipcharts, grouped into issues and shared with everyone after the exercise.
Isolation
There are fewer people living with HIV and/or in the same situation so it can be lonely. Some gay men felt that there was a lack of understanding in rural communities.
Confidentiality
There are prejudices to deal with and the fact that everyone seems to know everyone else’s business. Disclosure is difficult. There is a lot of ignorance of the issues. Children in particular feel very vulnerable to stigma
“I had to decide whether to come out or deny my status. I have been open and not had much problem, although my kids who are negative do get it used by bullies”
Lack of support networks and organisations
There is little help available and fewer services. It is also expensive to access services as it involves travelling some distance.
Living in a rural community means living a long way from treatment centres and there is a lack of public transport. It is difficult to access any services, there is no access to complementary therapies and standards of healthcare can vary considerably. Relying on a GP is difficult, as many do not know anything about HIV.
Increased standard of living
There is peace and quiet, a slower pace of life, space and the opportunity of living in a house with a garden.
Better health and social care
GPs tend to have the time, if not the understanding of the issues. There is less of a strain on services (both medical and social) because the numbers are smaller. Attending a treatment centre a long way from home gives some anonymity. Living in a rural community means living “away from the HIV mafia”.
Raise Awareness
When the opportunity arises talk about HIV rights and human rights both in personal life and at work
Display posters at local community colleges for World AIDS Day and involve young people
Use websites to advertise and set up a sort of members only forum
Establish Support Networks
Offer peer support through HIV clinics
Use Internet and email to develop local groups
Establish and use a resource room with free Internet service at treatment centres
Establish and use free Internet service at local medical centres for all service users (not just HIV+ people)
HIV+ volunteer network, including several organisations within the regions
Small organisations could liaise with neighbouring organisations over three counties/regions?
Campaign for Change
Write letters to MPs, MEPs etc
Service user representation
Work with a connected rural agency
Lobby for services people want
Reclaim the strength of local organisations
Lobby GP services for sources of information (to become one stop shops) etc.
KEY POINTS
Participants felt that the advantages of living in a rural community outweighed the disadvantages
People living with HIV can still be involved, despite the distance from HIV specific services
Technology can reduce the isolation
Organisations should ensure that involvement methods are not only via physical meetings (to enable people to get involved remotely)
There should be more online facilities for people who live in rural communities
GP surgeries should provide HIV information and/or internet access
This workshop was evaluated by 16 people between the ages of 32 and 64 (average age 42). The majority evaluating the workshop lived in rural areas from around the UK.
Gender
11 male, 5 female
Ethnicity
13 white, 3 black African
Sexuality
9 gay, 7 heterosexual
Usefulness
Very useful |
Useful |
Not useful |
75%(12) |
19% (3) |
6% (1) |
12 people set themselves action points
Improving local services (42%)
Keep up pressure in user/carer group
Understand rural services needs better
Work for better local services
Providing support (33%)
Give my experience to help someone
Help local support group
Build support network
Becoming more involved locally (25%)
Be open to questions in my community
Involved in local matters
Try and do more for my local rural area
Move on to Criminalisation Of HIV Transmission