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Post by Deleted on Feb 18, 2009 11:18:00 GMT
I'd think to really make an impact what is needed is a dedicated adult ADHD organisation / advocacy group - one which is a registered charity (perhaps), properly funded (eligible for various community grants), and a representative body for adults with ADHD.
Having a distinct organisation just for Adult ADHD would by itself improve recognition. The UK adult ADHD population can be estimated at over 1/2m - no small number, and warrants having an organisation dedicated to their needs.
AADDUK seems to be doing very positive things, and stands out for its 'activism' and advocacy compared to other 'services' (from what I can gather). As a group, adults with ADHD should be properly represented, and with properly funded organisation I'd think even more could be achieved. Perhaps this should be on the lines of a 'National Society for Adult ADHD'. I'd think this would carry more weight that an internet forum group, and could quickly develop to be a body which is involved in policy development as a key 'stakeholder'. This would also be in a better position for submissions to Parliamentary Select Committees, liaison with NHS Services to ensure appropriate service delivery, acting as a pressure group and conducting campaigns (e.g. in media, the spokesperson for the 'National Society for Adult ADHD' would have a voice - and media releases from a press office would have greater impact and get more notice, e.g in response to the Panorama programme). Consider as similar perhaps to National Autistic Society and other similar organisations.
As I see it, Govt and NHS policy makers are always looking to get involvement of appropriate organisations and community groups. To really make one's voice heard means taking on a form that fits in with how they go about things (imagine not involving the National Society for Adult ADHD in policy development in that area, especially if such involvement was actively sought).
I think this could make a real difference - of course there'd be various issues to work out in setting this up, but nothing too hard, and if it came together, then it could then become a whole lot easier.
Probably the first thing to consider is what is already out there (e.g. ADDISS), what are they doing (and not doing), and what NSAADHD would do which would make it stand out from the rest - what is the gap or need that this would fill, and how the org would go about achieving this. If that can be shown, then I don't think there'd be too much difficulty obtaining the kinds of grants and funding needed to become a really effective organisation.
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Post by roland on Feb 18, 2009 13:50:17 GMT
Hi Dannz,
Welcome to the forum!!
You are right that there is a need for national advocacy for adults with ADHD, and that is why we formed, and this forum is only one aspect of our involvement. Sometimes we feel a bit like Sisyphus, condemned forever to roll a boulder uphill.
From your post it sounds as if you might have some experience with advocacy. If so, we would be really interested in hearing more.
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Post by Deleted on Feb 18, 2009 16:42:15 GMT
hi dannz & roland, hope you're both well! i 100% agree with the idea of the 'national society' type organisation, as proposed by dannz. It would enable a consistant message, to be given to the media on behalf of adhd sufferers nationwide, as people in the media would have an organisation to approach as the 'first port of call' when looking for quotes for articles, people to interview etc... also setting up and working as a charity, would allow fundraising, which could enable dedicated people (such as roland ) to work full-time on the causes of helping those with adhd, and promoting knowledge of the disorder among the general public. if people were interested in taking this route, i'd love to be of help in any way i can. my father, has spent his career, in accoutancy for charities, and among other things, was finance director for a national special needs charity. i know he'd be happy to give free, impartial advice about the technical side of founding a charity etc... if anyone wants to take it forward. -matt
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Post by roland on Feb 22, 2009 13:51:09 GMT
Hi Matt,
Thanks for the offer! Could you either pm or email me?
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Post by Deleted on Jan 13, 2010 9:21:07 GMT
dannz that sounds excellent so how would we get the ball rolling with that ? it is absolutely what we need its a must could u tell me more about what i can do to help with this from Southampton Ive got a meeting with my mp next week could i get him to help i also have an app with link this week could they help
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Post by Julie on Feb 10, 2010 18:17:54 GMT
Hi everyone, I am a third year student at Huddersfield University studying a degree in psychology, and am producing a leaflet on Adult ADHD, which will advice adults what it is, how to get help and to let them know other people who suffer with the condition. I have included all local support group details, so they can come and talk to real sufferers like yourself. I have a son with the condition and know how hard it is for you to cope with daily living (at the rate it changes). Well thanks for reading this and I hope in the future you will see my leaflet about. x x x
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Post by MarkinGreenwich on Feb 10, 2010 18:45:36 GMT
Hey, 1st year computer science at greenwich uni here (hope pgce after). I work with the specialist disability ambassadors and have been asked to strt giving a 15min speech to all the ambassadors and maybe other groups as I have full AADHD plus high AS and ASD so Id be interested in getting involved when Im not brain fried from programming on both any organisation and any leaflet making, due to my age (38) Im already becoming a mini advisor with my ambassador role lol but sa I want to go towards teaching at the end this is all good I strted a UK AADHD facebook page too for what is worth =)
Mark
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Post by Deleted on Feb 11, 2010 15:04:38 GMT
Brillent. Excellent idea Mark about a prper charity, if you want any help i.e with spreading word or fundraising let me know.
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Post by roland on Feb 12, 2010 9:43:01 GMT
Hi Julie welcome to the forum and if you need any help with your leaflets let us know, you may be able to get some ideas from the ones available in our library on our website (this forum is part of the website) www.aadd.org.uk/.
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Post by Deleted on Feb 21, 2010 15:28:00 GMT
I think that this is a fab idea and the way to move forward and keep our momentum going ! Anything I can do to help let me know ! My friend Dawn who was recently diagnosed at the Maudsley has a friend who thinks she has ADHD and on hearing Dawns story went to her GP in Wandsworth to discuss a referral for an ADHD assessment and was told that she could not have ADHD as it was an 'AMERICAN THING' ! The poor woman is not following it up as she does not have the energy or the knowledge to stand up for herself . I will be ringing the PCT to see what can be done about this lack of knowledge and stupidity within the so called medical profession ! This is just one of the many instances that stops ADHD adults from getting out of the HELL which is ADHD and also then being able to help us parents to help our children who eventually will need the same help further down the line and so it goes on and on and on ..........................
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Post by Amy on Dec 8, 2012 12:19:07 GMT
Hi there,
I know this post is a couple of years old, but am really interested to know whether anything has progressed with this idea or if I can help in any way?
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Post by Deleted on Dec 8, 2012 14:33:01 GMT
No body appears to fulfil all the criteria.
ADDISS is still mainly responsive rather than active, UKAAN is a bit up it's own professionalism and AADD-UK, and the various independent support groups, are too fractured.
UKAAN is the most promising but hasn't grasped the nettle of advocacy preferring to concentrate on being 'medical'.
I'd love to get involved in something that ties everything together - I've put out feelers to a couple of regional groups but they're so ADHD (focussed on what they do but useless at replying to mail etc) that it's a bit dispiriting.
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Post by Iggs on Dec 8, 2012 14:48:35 GMT
It's sounds like a fantastic idea.
One thought... I can only speak for myself but I have seriously good intentions when it comes to campaigning on other issues but going from the idea to the reality is where I come unstuck.... One of the reasons why I really want to crack this ADD thing... so I can get of my arse and actually do something that counts instead of just dreaming and scheming...
Hopefully there are other people here with knowledge and understanding of ADHD in adults who are less untogether than this, but if not that may be the reason why a great suggestion hasn't moved forward. As I say I'm only going by my own experience without treatment but that does seem to be the nature of the beast...
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donkeykebab
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Back on the waiting list for assessment... Again!
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Post by donkeykebab on Jan 31, 2014 10:16:11 GMT
No body appears to fulfil all the criteria. ADDISS is still mainly responsive rather than active, UKAAN is a bit up it's own professionalism and AADD-UK,the various independent support groups, are too fractured. UKAAN is the most promising but hasn't grasped the nettle of advocacy preferring to concentrate on being 'medical'. I'd love to get involved in something that ties everything together - I've put out feelers to a couple of regional groups but they're so ADHD (focussed on what they do but useless at replying to mail etc) that it's a bit dispiriting. Does this not exactly demonstrate the need for a National Association? A body for all concerned to convene and agree strategy and policy? I for one would feel passionate about forming a national association, but I'm a 'nobody' from Bristol, so who would listen? There is an excellent (but long) guideline for setting up a national association HERE
It gives some amazing background and guidance
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Post by Kathymel on Jan 31, 2014 11:47:19 GMT
Becoming an advocate, even on a small scale, is proving problematic for me. I wanted to get some experience from one of the local mental health advocacy organisations in my area during the year I have taken off my degree, but they've both lost their volunteer coordinator funding, so can't take on any volunteers to train up.
I've got a year to do to finish my degree so there is the possibility I can find an employer who would fund advocacy training. I've no idea what else to do. I can't afford to fund a course myself.
It's something I feel passionate about, but I know it can be quite a minefield if you don't know what you're doing.
I've seen advocates who, rather than empowering their clients, just end up doing everything for them, which is really not the point. I'm also aware there is a danger of co-dependance if you don't manage to keep a professional distance, something I know I certainly need to be aware of.
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