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Post by Atticus on Jun 15, 2008 13:57:51 GMT
In Scotland, guidelines for medical treatment by the NHS are issued by an organisation called SIGN - www.sign.ac.uk Here is a link to the most recent guidelines for ADHD: www.sign.ac.uk/guidelines/fulltext/52/index.htmlThe shocking thing is that there is no mention of adults whatsoever!We really have to remedy this situation. Let this thread be a rallying point for anyone who wishes to have adult ADHD recognised in Scotland! If enough people join perhaps we can get a campaign going. Please sign up.
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Post by Deleted on Sept 5, 2009 9:53:33 GMT
Hi
Yeah lets all rally! A year and a bit after you start this thread!
Seriously though I am soo dis-regulated.
What the heck is the deal with sign guidelines? What do we do!
I have done nothing in terms of writing to msp's and local health trusts. I am a bit unsure as to how to approach these fuddy-duddies. That has to change!
Is it time to get a Scottish petition going? What should I be doing to raise awareness?
As for the Scotland meeting, Glasgow is just too far away for me and I don't know it very well. Should I be setting up an interim meeting for southern Scotland? I'm thinking as far north as Lanark but then I'm being selfish because I know that town. Would anyone be interested in this?
I'm being so lazy while people with ADHD in Scotland are being disposed of. Though to be fair I have been struggling to get to grips with myself.
Thoughts, comments and suggestions welcome. Plus if anyone from Scotland could acknowledge this thread so we can get an idea of numbers.
Let the time for rallying be now!
Freewill
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Post by Deleted on Sept 5, 2009 10:13:08 GMT
Hi again.
Discuss awareness week too please. ;D
Freewill
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Post by Deleted on Sept 5, 2009 11:22:10 GMT
I thought the rallying call was to cheer the boys on today but I guess not Freewill, I try my best to sort the situation out. Unfortunately, our ministers do not see fit t do anything about the situation. Read my letters to the cabinet here aadduk.proboards.com/index.cgi?board=campaigns&action=display&thread=144&page=1I aint going to let up on this subject. I will start to talk to newspapers as well once I get another generic reply (im expecting it). I suggest you writer to your MSP also and start annoying the life out of them too. You can always utilise some of the text in my letters or the others flying around the site. They are good for using as a template and then just add in relevant stuff by yourself. And I would come see you in Lanark Freewill but its probably best u set something up in Dumfries. I cant tell you that you will be any more successful than myself but its got to be better if we have them spread out a little. You are too far away friom Glasgow, so there will always be someone who is too far away from Lanark. And as for the being lazy talk. No you are not. I struggled with getting mine started but done so through the help of people on this site. Its just who we are freewill. Everyone will help if they can and offer support when they can.
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Post by Deleted on Nov 5, 2009 17:44:06 GMT
The new SIGN guidleine has been published, it is only in e-format at the moment, www.sign.ac.uk/guidelines/fulltext/112/index.htmlUnfortunately it still doesnt include adults. So I guess thats us screwed for another 4 years at least, until the revise it again. Gutted isnt the word
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Post by andy12345 on Nov 5, 2009 20:03:49 GMT
Madscot, It's amazing that its taken until 2008 in England to actually get an adult guideline on ADHD, let alone Scotland's delaying tactics. I mean its been recognised and medicatable in the USA for the last 50 years... Some would say "that's because they give ritalin out like smarties etc" and in some ways that is very true. However, if people's lives can be turned around, how can it be mocked? It must be torture, I suppose you will have to find alternative medication? I am pushing this new russell barkley vid....... Dont miss the bit about oppositional defiance disorder argh. stream.buffalo.edu/shared/devo/CCF/Barkley/rnh.htm its in "general" as well.
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Post by Deleted on Nov 6, 2009 17:52:43 GMT
Oh yeah ODD fits me like a glove as well. Funny you mentioned that I guess its a good trait for fighting the system.
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Post by roland on Nov 6, 2009 23:06:56 GMT
Hi Guys, I've heard via the grapevine that Dr Judith Burgess of NHS Fife is assessing and treating adults with ADHD. I'm afraid I don't have her contact details but here's a link to NHS Fife www.nhsfife.scot.nhs.uk/about_us/contact_us.htmlIf you don't live in her area, you could still try contacting her and see if she knows of other psychiatrists in Scotland who can also help adults.
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Post by Deleted on Nov 8, 2009 12:42:30 GMT
Im sure it is the Fife region that Gordon Brown is associated with also. It seems to be that Fife is the only region who has any clinicains who know anything about ADHD. Unfortunately Gordon and the troops who are fighting our corner seem to be fighting a losing battle. I heard from one of the civilians on the "board" who revised the guideline and none of them were happy about this new guideline not including adults but apparantly there is nothing they can do due to lack of funding. As always, the short sighted only see what they are paying now, rather than looking at the savings made elsewhere (like on the police having to chase us).
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Post by roland on Nov 8, 2009 13:52:55 GMT
They actually can't lose because then NHS Scotland could potentially be in breach of the Disability Discrimination Act!!
If the fighting is become harder, then obviously a change of tactics is needed (e.g. more troops, combining guerrilla with conventional tactics, hitting the weakpoints instead of the strongholds etc.)
It's time to rally the troops and get imaginative!
1. All ADHD people in Scotland unite 2. Get service user reps onto each trust 3. Jointly go to local press in each area 4. Hammer each trust with formal complaints 5. Remind each trust of their legal Disability Equality Duties
AADD-UK will help with finding contact info, letter templates, & leaflets, and supporting information.
btw: It's amazing how quickly they can find funding when faced with the possibility of public exposure and embarrassment ;D
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Post by andy12345 on Nov 8, 2009 23:47:17 GMT
Then, the lines of war are drawn!!!!!!!!!! Take the battle to them!!!!!!!!!!!! Do not give up!!!! Never fear!!!!!!
Errrr, anyone for a cup of tea before the war?
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Post by Deleted on Nov 26, 2009 16:42:41 GMT
Hi guys I'm in Scotland and, despite the huge intervals between appointments, I'm being treated for ADHD. Just started, really. Diagnosed about 2 weeks ago and starting on medication. It took handing a package to my GP (skeptical about it at first, as I've got a PhD, job and stuff) containing : the results of a serious screening test (available on line), same test done by my wife (on me, of course), plus a letter saying how bad things are and a copy of a couple of good scientific papers on the prevalence of ADHD in adults. My GP wrote back the next week saying he had referred me to the clinic. About a month later, letter from the clinic with appointment date at the Andrew Duncan clinic, with Dr (Prem?)Shah. He seems to be on the ball. Had a first interview with him around 2 months ago, had some psychometric tests (some a bit odd) and another appointment, now with my wife, when we discussed this. There and then, after very well put remarks on the legal side of it and with lots of warnings, comme il faut, he put me on Concerta, starting with a (very) low dose. Now waiting to see how it goes. No effect as yet, but still at 27mg. Cheers
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Post by Deleted on Nov 26, 2009 20:59:36 GMT
Welcome Henry
Glad to see another Scot on the forum. I went to the Andrew Duncan clinic where I was diagnosed with major depressive disorder. The misdiagnosis and treatment really screwed me up and I had to move to dumfries with my parents. I'm glad to hear that this Dr is on the ball. Scotland has a really bad problem with ADHD awareness. The more people we can get on forums like this the better the credibility for the condition. I'm sure the other Scottish members will be keen to extend their regards.
Freewill
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Post by Deleted on Nov 27, 2009 20:07:52 GMT
Hi henry. Sounds like you seem to have one of the few Psychiatrists that have a grasp of whats going on. My Psych hasnt a clue and basically just gave me meds because I was so insistent that I have ADHD. He hasnt conducted any tests and clearly oes not know enough about it to be treating people. I should have had some sort of background history done and other tests which would rule out other possibvilities with similar symptoms. Ive now decided that only 1 person is going to help me, ME. So I will continue taking the meds (which are helping incidentally) and try to find some sort of structure in my life. If you fancy coming along to the meeting then you are more than welcome. It is in Sauchiehall Street, Glasgow. Details are here sites.google.com/site/scottishadhdadultsorg/HomeAnd as for the rally to fight. Ive not got it in me at the moment. I cant be well or something.
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Post by Deleted on May 9, 2010 7:58:49 GMT
interested but to late i joined here because my friend has HDAD and is adult in her 20s struggling . any info wil help me try get her involved ....she is not on internet personaly had her here so on line with me when found your link...she now knows you are here ...but not ready etc to get inolved maybe next meeting in falkirk... probably to late now just learned of the one in falkirk to day 9th may .... we live in East Kilbride attend same church i know the real struggles she goes through ...im her friend and have known her 4 years... jimscot
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rick123
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Post by rick123 on May 9, 2010 9:39:08 GMT
Jimscot You and your friend will be made very welcome at any of the support group meetings whenever you are ready to attend. For the Central Scotland support group, the meetings are posted on the forum calendar and on the group website at sites.google.com/site/scottishadhdadultsorgAlso if you wish to email me at scottishadhd@googlemail.com I will add you to the mailing list. Same message applies to anyone eles who is interested in joining the Central Scotland Adult ADHD Support Group and because most members need to travel a far distance to get to the meetings we would like to make more use of e-mail and also posting on this forum. Extra message for jimscot - please browse this website there is a wealth of information available here and it can save you hours of hunting for information on the internet.
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Post by Deleted on May 16, 2010 14:56:42 GMT
Hi rick, hows things? Hope the families well. Im not sure that moving the meets to Falkirk is the best idea. I know I should not stick my nose in now Im offski but its a bit of a nightmare getting there is it not. I know for a fact I wouldnt travel to Falkirk from Wishaw if I didnt have a car, which I dont so I wouldnt be going. Reason I put it in Glasgow was because it is relatively easy to get to for most people. Even though I had to travel through to go myself. I know you travel to get there as well but thats not what Im getting at. Point is Glasgow or Edinburgh are easy to get to. Has anyone spoke to you regarding this?
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rick123
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Post by rick123 on May 16, 2010 15:49:12 GMT
There were 5 attendees at the meeting in Edinburgh on 11 April, the Falkirk location was selected by general consensus of the group members. At the Falkirk meeting on 12 May 9 people attended so I guess it was a good choice. We would still like to hold a Glasgow meeting and one of the members has agreed to host it at Costa Coffee, Saughiehall Street, the next meeting however is still fixed for the Falkirk venue - Sunday 13th June, Costa Coffee, Kirk Wynd @ 2:30pm.
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Post by Deleted on May 18, 2010 20:08:28 GMT
Fair play Rick and well done. I assume you joined up with Ruth etc in Falkirk? Tell her I said hello and I always appreciate her help. Can I ask if it was all different people to those you met previously in Glasgow? Since you are trying to expand it then perhaps you should try and increase the advertising somehow. Not quite sure how but Im going to have a think and get back to you on it, see if anyone else has any ideas that cost nothing but a little effort as well. Annie or Atticus may have some ideas, im sure they had a few for me. Im always willing to give you that effort as well if I can do something online for you or even email it to you. It does sound like you really are doing well though. Thanks again for taking up the reigns. Ive my interview tomorrow for a job in Spain and im very confident of landing it. Swines wouldnt take me to China because of my breach of the peace criminal conviction. So its back to Spain before the month is out hopefully and get settled down
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Post by Deleted on May 18, 2010 20:10:49 GMT
*Standing Ovation* It was only me in my living room myself but the thoughts the main thing
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rick123
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Post by rick123 on May 20, 2010 22:15:49 GMT
Aye, good turnout for the Falkirk meeting, we have a core membership now so the group should gather its own momentum. Next meeting for 13 June is still on, Falkirk venue.
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Post by Deleted on May 22, 2010 10:31:13 GMT
Haha, I wouldnt count on the momentum part Rick. Its a bunch of adhders and something we have never had is momentum. Ooooh, look theres a cat
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rick123
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Post by rick123 on Jul 3, 2010 10:28:57 GMT
Well, we have a google egroup up and running now so members can post comments and discussions on things discussed at the meetings. Provided I can remember to keep it uptodate that is!!
madscot you wrote: "And Im going to change my name I think. Everyone keeps thinking Im this mad guy called Scott. Wonder why?"
Personally I think Mad Scott sounds good - you should keep it.
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rick123
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Post by rick123 on Aug 2, 2010 22:06:44 GMT
Any thoughts on how to lobby the NHS in Scotland for some improved medical therapy for adult ADHD in Scotland? There is only one clinic - it does a very good job, but is ridiculously under staff to cope with the number of adult adults that are referred to it. With impending funding cuts it looks like we are going backwards rather than forwards.
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rick123
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Post by rick123 on Apr 16, 2011 19:00:48 GMT
Went to a Scottish Parliament reception on 7th March, Malcolm Chisholm fairly supportive, also attended the No Mind Left Behind international conference on 29/30th March and Jackie Baillie gave a very supportive speech. With the lead up to elections now is a good time to challenge candidates on their policies on ADHD, neurodiversity in general, why do they give such a low priority to mental health and support in higher education for those with learning difficulties.
I have a copy of Scottish Government commitment to adhd from 2008, I will post it on here later. I know there has been not much movement since then. Once you read it please use it to challenge prospective MSPs when they call at your door.
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rick123
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Post by rick123 on May 21, 2011 15:27:03 GMT
Well the elections decided and Alex is back in the hot seat.
The statement from Nicola Sturgeon on ADHD in 2008 is copied below:
We are committed to the earliest possible detection and intervention for those with ADHD. Treatment of individuals with ADHD, whether diagnosed in childhood or as an adult is the responsibility of the clinician, in consultation with relevant professionals involved in their case. All relevant care options should be considered as part of care offered to provide the best outcomes for the individual. We recognised the valuable contribution that psychological therapies can make to improve the quality of life for people with mental health problems. Access to appropriate psychological therapies should therefore be considered as part of the care options offered to adults with ADHD.
Nicola Sturgeon Cabinet Secretary for Health & Wellbeing 2008.
Not much has changed 3 years later, there is no clinical pathway to diagnosis for adults in Scotland, GPs are still poorly informed about adult ADHD and where to refer patients. Even when referred to adult services, patients receive poor advice and often no help. GPs are not able to access the psychological therapies much praised by N Sturgeon and can only refer patients for further assessment. Time for a few choice letters to MSPs I think, anyone else want to help?
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Post by snickerz on Jun 17, 2011 4:16:48 GMT
ill help rick
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rick123
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Post by rick123 on Jun 21, 2011 16:32:28 GMT
Thanks snickerz, Hope the Equasym is working ok? - we will need some adhd folk on meds if we are going to get anywhere with this.
I have still not got to the bottom of why there is no formal transition service in Scotland from CAMHS to adult services, why did they consider that this was not necessary when the SIGN guidance was prepared? The argument that adult ADHD diagnosis can be carried out in mainstream adult services is laughable.
The following is from the Chief Medical Offers annual report of 2009. "Each year around 500 Scottish teenagers with active ADHD leave under 18's services, having received a lot of help and support. Because ADHD is under-diagnosed in Scottish children, this figure is less than half what it should be. They move on to services for over 18's where ADHD is at best an unfamiliar diagnosis and at worst its existence is denied.
Some children grow out of ADHD, and symptoms do mature, but one-third of childhood sufferers will still have active symptoms. Most adults with ADHD will have less hyperactivity but still struggle with their attention and impulsive behaviour. There are the added problems of easier access to alcohol, needing to keep a job and being allowed to drive a car - resulting in increased substance misuse, anti-social behaviour and poor employment prospects."
Even when there is some common sense stated, we still do not get a defined clinical pathway for diagnosis.
I particularly like the summary from the Inquiry into child and adolescent mental health and well-being 2009: "Despite the commitment of the Scottish Government and previous Scottish Ministers at a policy level, the existence of an agreed framework and the devotion, good work and admirable efforts of many individuals across the field, mental health and well-being seems not to have been a priority amongst those responsible for delivering the policy."
I will keep digging and pm or send on some drafts. Anyone else interested in challenging their MSP or NHS Trust on this?
Service users do count when tackling the NHS and it is about time we asked them to put some action behind the commitments about engaging with community groups.
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Post by snickerz on Jun 28, 2011 9:03:20 GMT
is the some kind of draught letter or template i could use would like to send this to alex salmond
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rick123
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Post by rick123 on Jul 6, 2011 22:23:00 GMT
Template letter - yes. - I will forward this.
We have raised freedom of information requests with all the NHS Trusts in Scotland and we intend raising an action with the the Public Petitions Committee, draft is prepared and ready to submit.
Watch this space.
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