Question
Are there any support groups in the UK for not taking medication?
12 February 2024. Related: Adherence, All topics, Newly diagnosed, Starting treatment.
Hi, recently diagnosed at nearly sixty and getting my head around it. I have decided against taking medication, for several reasons.
Can anyone help or are aware of any support, advice or groups available in the UK ? There must be others like me. Much thanks.
Answer
Hi, how are you doing?
How have you been adjusting to being HIV positive? and do you have a support network around you to help e.g., friends/family, your doctor?
Do you mind sharing any reasons for why you do not want to start treatment? I recognise that it can be daunting the idea of taking a pill everyday, but it is the best way to maintain a good quality of life and maintain a life expectancy similar to your HIV negative peers.
The UK does have a number of support groups for people living with HIV. They do not specifically cater to people not wanting to start treatment, but will be safe places to discuss how you are feeling and receive peer support.
This link will list the groups available.
Often the Terrance Higgins Trust is a good place to start when looking for pastoral support.
Because of the success of treatment, especially in the UK it is rare to find people not on treatment. This is because most people find that there are very few if any side effects and it maintains a good standard of living.
This is a guide about starting treatment that might address any concerns you have and you can always ask further questions here.
Treatment is not always suitable for everybody and you shouldn’t feel like you have to take it. However it is important to be informed about treatment and what the pros and cons are.
Josh.
Hi Iba, as you have mentioned i-base is a treatment charity. Outside of the charities for which you have already spoken to (THT and poz) I am not aware of other suport groups specifically for people choosing not to start treatment.
Have you been able to discuss with your GP/HIV specialist about any groups that may me ongoing near to where you live?
Thanks, there are five specific reasons why and all would take a lot of writing to explain and need to be understood as a whole.
I looked at your link but not support there really? Only poz or THT who I spoke to already.