Long Term Survivors Needs

posted: 12/11/2008

Feedback from the Long Term Survivors event held on Wednesday 8 October 2008.

This event was held following a number of comments in the service user survey earlier this year. We wanted to get people together to give a opportunity to tell us what is needed by long term survivors, from George House Trust services.

10 people attended from all the different George House Trust services.

Some people had been diagnosed very long term, up to 23 years, others rather less - 6 or 7 years. A long term survivor is someone who has lived longer than 5 years with HIV.

We talked about how the word "survivor" is quite an emotive term and that it might be better to talk about people who were long term diagnosed.

Mostly people said that they didn’t want anything special, or another service, although there were some interesting comments suggesting a Long Term Diagnosed course, similar to the Newly Diagnosed course. We will look into this as a possibility.

Unsurprisingly not everyone in the group agreed about everything.

Some people spoke about putting their life on hold when they were diagnosed as they were told they were going to die. Eventually the longer they lived they realised this was not the case. Some people face significant uncertainty since continuing treatment cannot be guaranteed as they don’t have permission to stay in the country; there is still huge uncertainty in some people's lives.

Where from now?

We will host another meeting like this in about 4 months, watch the website diary for details.

If you have any comments or feedback then please email Lynda Shentall Director of Services

or ring 0161 274 4499
 

Long Term Survivors Weekends

posted: 12/11/2008

The National Long Term Survivors Group has now got a 3 year grant from the Elton John AIDS Foundation to help combat social isolation in people who have been HIV positive for longer than five years and who are unable to access local support.

They are providing a series of weekends for some people living with HIV. The weekends are not free but funding can usually be found. For example they have a fund (supported by this Elton John AIDS Foundation grant) that can pay for some people, as well as for childcare and travel. If you need help with funding ask NLTSG about the help that might be available for you.

Who can go on these weekends?

You need to have been HIV positive for 5 years and be "unable to access local support". The Group will make its own decisions on who gets places but we think people living in Cumbria, and much of Lancashire and Cheshire will be able to show there is no or very limited local HIV support available for them.
 

Are you in one of the priority groups?

1 Firstly, people living in rural areas where existing services are either thin on the ground or non-existent. (eg we suggest this means most of Lancashire, all Cumbria, rural Cheshire)

2 The second group is the over 50’s, which is a group that can find itself excluded from contemporary society and the social ‘scene’.

3 The third group is people who have been living with HIV for over 10 years.

4 The final group is HIV positive volunteers and workers in the HIV sector who often have difficulty accessing support and services in their local area as they try to maintain a professional relationship with other service users.

If you would like to attend an NLTSG weekend, please contact bookings@nltsg.org.uk or 0208 691 8956.

Living Proof weekend dates 12 - 14 December 2008, 3 - 5 April 2009, 10 - 12 July, 18 - 20 September, 11 - 13 December

The weekends start on Fridays at 3.30pm and finish on Sundays at about 4pm.

The weekends provide a safe, relaxed place to meet other people who have also been living with HIV and AIDS for five or more years.

A programme of activities is arranged for each weekend - group workshops, one-to-one counselling, complementary therapies - but it is entirely up to each person who attends the weekends as to whether they take part or not in these activities. Many people find the company and ability to talk freely about HIV, as well as many other issues, provides the greatest benefit.

National LT Survivors Group