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
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