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Post by annie on Dec 29, 2013 13:29:26 GMT
Hi Everyone
When the founder members of this website set it up one of our main aims was;
To ensure that all adults have fair and equitable access to health, social, employment and other services.
More than 4 years on I'm aware access to Adult ADHD Clinic services have improved, particularly through the efforts of UKAAN who provide MH T's with specialist training. However, it feels as though we still have some way to go. It would be helpful to hear from members their understanding about what ADHD Clinics are available in their area and what county's/borough's they cover.
To set the ball rolling. In the North East of England there is an Adult ADHD clinic (unfortunately still a pilot, after 3 years) which covers the borough's of Sunderland, South Tyneside, Gateshead, Newcastle, North Tyneside and Northumberland.
What about the rest of the country?
annie
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Post by JJ on Dec 29, 2013 15:24:34 GMT
Hi Annie East Kent is served by a Maudsley satellite clinic in Sittingbourne - this is the one where they flash your name followed by 'ADHD' on the overhead electronic display to the waiting room full of other patients. Specialist adult adhd service, not specialist in confidentiality or dignity.
I think West Kent has its own service.
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Post by Deleted on Dec 29, 2013 15:57:12 GMT
Manchester has one - it's hidden in the Specialist Service for Affective Disorders at MRI
Liverpool - Dr Mason's clinic at St Catherine's in Tranmere. There are satellites in at least two other places serving it.
Lancashire has one, according to ADHD Lancashire. DKL might have better detail or get in contact with Bee at ADHD Lancashire.
All the above reputedly take referrals out of area
Salford has Dr Tint
Trafford (TES) say they have a specialist - I'm never sure where they're up to.
Dr Joe Johnson (sp) was running a service in Atherton - I've not heard anything about it for a while.
Wakefield also has a service
Dr. Marios Adamou, MD, MA, MSc, LL.M , MBA, PhD, PGCE, MRCPsych, CMgr MCMI, DOccMed, FHEA, FRSA, FRSPH (Bio & Disclosure) Consultant Psychiatrist Service for Adults in ADHD South West Yorkshire Partnership NHS Foundation Trust
more letters than the alphabet!
I know Cumbria still has no specialist provision.
According to one of my clients Dr Chris Taylor has stopped taking new ADHD referrals (Leeds/Harrogate) though this should be independently confirmed.
This to the best of my knowledge Dec 2013
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Post by boo on Dec 29, 2013 17:42:53 GMT
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Post by manson88 on Dec 29, 2013 18:02:14 GMT
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Post by annie on Dec 29, 2013 19:13:46 GMT
Thanks to all of you who have posted - there must be a lot more of you on here who have local information - so get posting!!
Can I ask you to do a bit more delving?!
Can you contact these Clinics and find out which Borough's/Counties/ Shires they cover. We really do need to create a map on here so we can get a feel about how many NHS MHT's have responded to the 2008 NHS guidance and how many CCG's have used these guidelines to inform their Commissioning.
Thanks for all your help so far.
annie
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Post by manson88 on Dec 29, 2013 19:48:51 GMT
I will not have much to do lol;D
Sent from my GT-I9300 using proboards
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Post by boo on Dec 29, 2013 20:08:49 GMT
annie, the link i posted is hopefully quite informative and according to what it says on there says it covers the entire county and although it is "based" in Kettering, mentions that appointments can be made in various clinics across the county. I don't know how long before, but this was already in place before the NICE guidelines came out, I was dx there in 2008 and i was told it was already pretty well established by then (and I think they were always looking for ways to improve the service and post-dx support etc too)
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Post by fuzzywuzzy on Dec 30, 2013 0:25:42 GMT
this is the one where they flash your name followed by 'ADHD' on the overhead electronic display to the waiting room full of other patients. Specialist adult adhd service, not specialist in confidentiality or dignity. Can you imagine them doing the same for cancer? Erectile dysfunction?
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Post by Deleted on Dec 30, 2013 2:21:44 GMT
I'm not up for that!
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Post by annie on Jan 3, 2014 21:43:54 GMT
Thanks to those who've passed on information about your area. It's very helpful, but still only covers a small part of the country.
What would be really useful if some of you on here would take responsibility for researching what is going on in your area so we might gather a more comprehensive picture.
I haven't fully thought this through but for example:There are about 60 Mental Health Trusts in England who are the Trusts most likely to be providing Adult ADHD assessment, dx and treatment. If one"volunteer" who lives in the catchment area of these Trusts would be willing to write to their Trust (on a template we provide)asking relevant questions about the service currently being offered, that could help develop the "bigger picture".
What do people think?
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Post by Kathymel on Jan 3, 2014 22:13:47 GMT
I've been in contact with my trust, Annie. They have no intention of creating a specialist service for adult ADHD. They (the Minister of Health for Wales, my CCG and the psych I am under) have all spouted the same message when challenged:
"While we expect all of Wales’ Local Health Boards to take full account of NICE guidelines, the position is that treatment should be delivered according to clinical need and that all psychiatrists delivering secondary care services are mental health specialists, broadly expected to have the competencies and expertise needed to diagnose and treat common mental illnesses which would include ADHD."
If they are still spouting this twisted version of the guidelines by the time the QS comes into effect, I would be prepared to take the matter further with the right support.
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Post by JJ on Jan 4, 2014 3:30:39 GMT
annieI think this is a great idea and I'd be happy to find out about Kent. Xx
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Post by annie on Jan 4, 2014 8:48:00 GMT
Kathymel and JJ
Wonderful - consider yourself signed up!!
I know both of you have taken the time to read up and build up your knowledge base about the complexities of how this NHS system works - or not works!! You're well aware that pursuing our goal, (specialist accessible ADHD services in every area) is not going to happen without a lot of determination and a degree of doggedness - both of you seem to have that in bucket loads.
Give me some time to think about it and consult with others and as Arnie says "I'll be back" In the meantime Kathymel, remind me which area you live in?
Thanks again
annie
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Post by Kathymel on Jan 4, 2014 9:32:13 GMT
Kathymel and JJ Wonderful - consider yourself signed up!! I know both of you have taken the time to read up and build up your knowledge base about the complexities of how this NHS system works - or not works!! You're well aware that pursuing our goal, (specialist accessible ADHD services in every area) is not going to happen without a lot of determination and a degree of doggedness - both of you seem to have that in bucket loads. Give me some time to think about it and consult with others and as Arnie says "I'll be back" In the meantime Kathymel, remind me which area you live in? Thanks again annie I think doggedness may well be my primary quality. I live in North Wales in the Conwy Valley, Annie. The CCG is Betsi Cadwaladr University Health Board and it covers the whole of North Wales (Anglesey, Gwynedd, Conwy, Denbighshire, Flintshire and Wrexham) as well as some parts of mid Wales, Cheshire and Shropshire.
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Post by petra on Jan 6, 2014 16:54:53 GMT
The North Staffordshire Combined Healthcare NHS Trust does not have an ADHD service in place, although I have been diagnosed ADHD by a psychiatrist who now works for this trust.
I am more than happy to write any letters to anyone relevant if pointed in the right direction. I am in the process of preparing a letter for my MP.
Any help, guidance gratefully received!
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Post by annie on Jan 22, 2014 8:35:25 GMT
Ok folks this where my thinkings at.
ADHD in children/young people has been recognised for some time, although as far as I'm aware very few CAMHS provide a dedicated ADHD service. Also co-ordinated work between CAMHS and the LA (particularly Education) is poorly organised and because of that many ch/yp receive a less than integrated support service, with parents having to chase up/fight each part of the system. Never the less ADHD is bedded down in CAMHS.
What isn't clear is how well CAMHS is dealing with young people in transition. Until the 2008 Nice guidance it was routine practice to withdraw medication from young people and discharge them from the service. Nice guidance should have put paid to this practice as it was recognised, for the first time, that 2/3rd's of young people would go into adulthood stiil suffering a level of impairment which would affect their ability to address the challenges of adulthood.
The fact that these young people do need a dedicated Adult ADHD service seems to me to be a lever by which we can use to ensure Commissioner's address the lack of ADHD provision for adults. To treat the young person in childhood and then abandon them at the critical period of Transition, neither makes economic or clinical sense - a "sticking plaster" response!!
For those who have offered to do some background work, I would like you to find out which Health Trusts provide CAMHS and which Mental Health Trust they feed in to in terms of transfer of care. We need to be asking specific questions of CAMHS which identify the number of children they have dx and how this relates to the number of ch/yp within the CAMHS catchment area. In my area the number of ch/yp being identified has almost doubled in the last couple of years, but is still way below the number as per NICE - 3-5% and that's a conservative number. How many young people have been transfered to Adult MHT.
Your local Healthwatcg organisation should be able to help you identify CAMHS in your area. I believe the poor delivery of Transitional care can be a lever to Commissioner's and MHT's to make sure Adult ADHD services are provided.
Is this something people feel they can pursue?
annie
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Post by JJ on Jan 22, 2014 10:18:40 GMT
Hi annieFinding out this info is on my to do list - a proper one, not metaphorical, and tagged for mid feb. I'm overloaded with work and fighting to keep my children's school open ATM, but I wanted you to know I haven't forgotten. Xx
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Post by Deleted on Jan 22, 2014 10:30:17 GMT
East Kent is served by a Maudsley satellite clinic in Sittingbourne - this is the one where they flash your name followed by 'ADHD' on the overhead electronic display to the waiting room full of other patients. Specialist adult adhd service, not specialist in confidentiality or dignity. That's a disgrace. (sorry, just picked up on this but had to say it)
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Post by annie on Jan 22, 2014 17:53:41 GMT
Great JJ. Whenever you've got space in your busy life will be absolutely fine.
Kathymel - really worrying what your CCG believe - the thing is Adult MHS have never had to deal with ADHD and it therefore cannot be expected adult psychiatrist's will have the expertise. I wonder what happens to all those young people in transition in your area?
annie
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Post by Kathymel on Jan 22, 2014 23:57:03 GMT
annie, this isn't just my CCG, this is the response from the Minister of Health for Wales, so it's potentially the whole of Wales. And I agree. They may expect their psychs to be able to deal with this, but I'm only the second person that my psych has ever had to ask "The Committee" for permission to prescribe mph for. From my experience, I would say none of the other local general psychs have even got this far, so I may be the second person. Period. Their experience is non-existent. I submitted a FOI request here about adult services, which is fairly telling. The first psych I saw, when I asked him if he's ever diagnosed an adult with ADHD, did say he knew adults with ADHD, but only because they'd been diagnosed as children, so there must be some transitional care here from CAMHS. Obviously, one of the problems with transitional care is that children reaching 17-18 often start wanting to be independent of meds. If they stop accepting help before transition, they have to start from scratch if they change their minds once they are adults. Ridiculous. (Have told Genghis he is going to accept and present the prescriptions, regardless of whether he takes the bloody meds or not, as he nears transition.) Happy to do some more research. Could we formulate some questions to present as a FOI? Can't quite get my brain to do this itself ... I'm aware that my intellectual acuity would be somewhat more gimlet-like were I not half way down this bottle of wine ...
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Post by annie on Jan 26, 2014 10:47:03 GMT
Hi Kathymel
What a cop out re your FOI request - it's going to cost too much money to answer your query!! How come they're not recording this information - can they implement the NICE guidance if they don't hold this info?
What I'm suggesting is that you write to the Health Trust which provides your CAMHS. If we have a better understanding about what's going on in CAMHS then we can begin to know what kind of demand is going to be placed on AMHS to deal with those young people with ADHD coming through.It would be good to know if CAMHS are co-terminous with a LA who will have demograhic info which will be able to give you the child population (5-18)in that area. With this information you can begin to see how well CAMHS are doing in identifying ch/yp with ADHD and how that relates to the 3-5% prevalence rates NICE indicates.
In my area CAMHS is provided by a General Hospital Trust. It used to be that community paediatricians as well as child psychiatrists dx the condition. However it became obvious Paeds were not dx enough children and therefore were not developing their expertise, so now it's only Child Psych. who dx.
The information I'm suggesting is requested is:
How many children (5-18) are currently dx with ADHD Same question but figures for 2011-2012. That will tell you if the numbers are going up. ADHD is still under dx in childhood
How many dx children fall within the age groups 5-10, 11-15 and 16-18? This will begin to indicate what kind of demand is going to be made on AMHS. This might make AMHS realise they do need to provide a dedicated Adult ADHD service
How many 16-18 group have been referred to AMHS? Same question but how many young people have been successfully transferred Same question but for the year 2011-2012. Do the figures show AMHS more willing to take over care of young adults with ADHD?
What do you and others think about these questions. All suggestions gratefully rec'd!
annie
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Post by Kathymel on Jan 26, 2014 14:40:16 GMT
Okeydoky. FOI request is on my list of things to do. Questions seem good to me. Might be an idea to request the stats for several years rather than just getting a comparison of the last two, in case there was a glitch. JJ said last time that you can only ask so much per FOI request. Should I divide this one into a couple of smaller requests, do you think? I could send it to all the Welsh CCGs so we get an overall picture.
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Post by annie on Jan 26, 2014 19:07:04 GMT
Hi Kathymel
Thanks for your reply. I'm intending thid FOI request should go to Hospital Trusts who deliver the CAMHS. CCG won't hold that kind of information - only CAMHS who do the assessment/dx/treatment will have this info.
If you can cover all the CAMHS in Wales then that would be wonderful, but it's a big task and I'll be happy if you can do your own CAMHS. When I did my FOI i had about 12 bits of information I was requesting and there didn't seem to be a problem with that - only the largest Trust in my region which provides CAMHS couldn't give me any info about ADHD ch/yp!!
Tomorrow I'll send you and JJ a pm because maybe there's an easier way we can develop this.
annie
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Post by Kathymel on Jan 26, 2014 20:40:23 GMT
Ah, I'm not up to speed on the structure of NHS organisations, I see.
I'll see if I can't scare up a list of the Welsh CAMHS. Presumably, there are going to be a lot more of them than CCGs. A lot more!
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Post by JJ on Jan 26, 2014 23:35:54 GMT
Hi annieFirst of all, yes please do email me - I've been meaning to email you for a couple of weeks or so now to see how I could be of more help. I'm still full on with this fight for my children's school but still have mid feb in my mind as having a small breathing space - even tho the battle won't be over then. I've only just skimmed what you've written, so may have got the wrong idea (plus I have no recent personal experience of children's services) but, I'm questioning whether this way is the best way to go about it. This is because when children turn 18, if they've been diagnosed as children, they don't need to be seen by a specialist - they can be overseen by a general psych - so there doesn't necessarily need to be a specific adult service for them......therefore knowing what happens in transition doesn't necessarily she'd light on the real state of adult services.... Have I misunderstood then? I got distracted while working the other day and ended up on a mini mission about mental health trusts - I had a thought about posting a link here to easily find your CCG and putting a template letter on here, so people could more easily find out this info. Then I saw there were 85 zillion CCGs So I tried to find a list of the mental health trusts Then I wondered whether every person is covered by a mental health trust anyway - ie like everyone coming under a CCG wherever they live, do they automatically come under a MHT (because I was thinking that some CCGs would contract services out to places other than the mental health trust they use - which is what mine do) So then I called NHS England to ask this - and she didn't know and told me to email,them but to specifically mention her name so they didn't send me a standard reply or direct me elsewhere. I've not done anything yet - and now I'm writing it, I'm not sure how useful it would be..... Or whether this adds anything to your ideas..... But I thought I'd mention.... I hope I've made sense.... Don't worry if I haven't, my head's not working properly on anything un-school related ATM anyway xx
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spok
Member posts quite a bit
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Post by spok on Jan 27, 2014 2:59:56 GMT
Not sure if reading this might help give ideas but read this anyway Hope it helps.
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Post by Kathymel on Jan 27, 2014 9:30:12 GMT
Thanks, Spok. Lots of useful info in there, for sure. Good to have a clear concise outline of the problems.
I can't see a date on it (other than the citations show it's post-2011).
(Edit - Ah, just spotted the url has 2012 in it, so I guess that's when it was published.)
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Post by petra on Jan 30, 2014 15:08:46 GMT
Hi annieI'm trying to get my head round all this stuff which is taking me a while! So far,...The North Staffordshire Combined Healthcare NHS Trust provides CAHMS in my area. There are three teams: Tunstall - this is the Central Referral Hub, Blurton and Newcastle. They treat patients until they are 18 years old, and they are then referred to adult mental health services. Am going to ring the Tunstall place now for more info. Little steps! Edit: via phone, am being passed from pillar to post regarding gaining any solid information regarding ADHD services for children/ yp in my area! Edit 2: can't find anything about ADHD services for children/yp in North Staffordshire, but there appears to be some service for children/ yp in South Staffordshire which is under a different trust. Edit 3: I have now found who and how to send for FOI request in North Staffs NHS Trust. I will sort this out soon, plus contact the South Staffs YP group.
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Post by Deleted on Jan 30, 2014 16:39:13 GMT
annie, might it be a good idea to set this up systematically at the top by qualified structural regional organisations the way @planetdave has started? once you get some information you can then edit a post to fill in the gaps as each region gets clarified.
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