I was a regular on this forum a few years back, back when I was trying to be diagnosed and looking for answers. Thank you so much for the help and guidance you all gave me here. It made a huge difference and I went on to get my diagnosis and I have been taking my medication for 3 years now.
My life changed quite a bit. Because/despite my diagnosis, I went on to work as a support worker. I work with ex-offenders and people at risk of homelessness and as you can imagine i come across a lot of clients that may have ADHD and most of their need revolve around impulsive behaviour, addiction and trouble planning.
Anyway, I have a better knowledge of the condition now and I work everyday with healthcare providers, charities and organizations involved in supporting people's heath and social care needs. Despite the help available by the NHS, I believe a lot needs to be done for adults with ADHD and I started SPARK, a group that aims to help adults with ADHD get the help and support they need. It basically a facebook page at this point, but I have both the knowledge of the condition and relevant professional experience.
I am posting here today because I need directions, suggestions and guidance so that I can make the most out of this platform and help the growing number of members in getting the help they need. www.facebook.com/CardiffAdultAdhd email@example.com
I personally cannot complain of Cardiff's services. I was lucky, i guess, and capable of putting my point across. Unfortunately mental health services expect patients to put their points across in a clear and objective way, so a lot of patients end up hitting a brick wall by saying the wrong thing. I also run across a lot of incorrect diagnosis, with doctors reluctant to correct their own (or other doctor's) diagnosis. Its a bit like asking a blind person to press the red button...
I was involved with a small local group that had meetings in a cafe. The group as since "disbanded". I'm afraid to set up a similar group because of the nature of our personalities... I'd hate to set up a group only to find people don't turn up or end up arguing. On the other hand, I may be able to moderate things in a professional way, now that I am medicated and trained....
What do you think? Have you been involved in user groups before? Did things go smoothly?
Yes, I have, am involved in setting up a user group and it's not without it's challenges - a room full of people with ADHD can be a challenge
Whilst a Facebook page can be helpful, it can be a bit too impersonal and people can be cautious (rightly so)about sharing information. It is a pity your previous support group disbanded, but maybe you are in a stronger place whereby you could set up a new one. Personally I think it's helpful to set up the group in conjunction with another voluntary organisation who might be prepared to offer you a free room/tea/coffee facilities/ photocopying. You might want to check out where Mind stand in relation to Adult ADHD - I think at one time, they didn't recognise Adult ADHD.
Being clear about what the purpose of your group is and setting out some simple, and not too many ground rules is a good place to start. When you say you "were lucky" does that mean your NHS is not well developed, in terms of Adult ADHD services in Cardiff? I know there have been people on this forum who have had problems accessing Adult ADHD services in Wales. Apart from offering support to each other, one of the purposes of your group might be to clarify with your local NHS where they are at in terms of providing an accessible service.
It is hard work setting up and running a group, but if people work in a collective way then they are more likely to see improvements in services.