"But no NHS board has any protocol in place to ease the transition of young people with ADHD into adult services, and there are no established services for adults with the condition."
"Jan Warner, director of performance assessment at NHS QIS, said it was reassuring that ADHD services across Scotland were generally of high quality, but added: "What is worrying is that society as a whole is failing to recognise many children with ADHD. We will now work with children, parents, carers, clinicians, social services and education services to tackle under diagnosis."
(Perhaps Jan Warner might be worth contacting about provision of services for adult ADHD?)
Also see that ADDISS gave a comment - but was solely to do with ADHD in children - I think this shows the need for an organisation focussed on adult ADHD which otherwise seems to get overlooked.
Hi, Someone suggested I should join the forum so here I am. ADHD Direct is my service and if folk have any question about the service or ADHD for that matter please feel free to get in touch. I was part of the review panel that put together the document Services Over Scotland. Hopefully the profile of adult adhd will continue to be raised so that dedicated services are developed in all the 14 health board regions.
I sent you an email Gordon. I really hope you can help me. I have no shame in saying I really am desperate. I have coped long enough and I have had enough. Doctors dont seem to understand and I just get palmed off and I dont know where to turn.
Just to let you know, I got the dx. I am officially 100% ADHD. Not a fraud as I believed or a hypochondriac or just plain off my head.. I am still coming to terms with this revelation and the only feeling I have really sorted out is one of relief... It DOES matter that I know what is wrong with me and that I have some help to be able to cope in the future. For a couple of years there i thought i would be able to manage. When I heard 'bout Adult ADHD I read and read 'bout it and felt informed and hopeful. In the end though that was not enough as I started to doubt what I was reading and wondered if I was just using all that info as an excuse for being a witch with a bad attitude and a lazy disposition.. Not so!! I have it, and now I need to insist my Dr. helps me to help myself...I will let you know how I get on up here in NHS Highland and if there is anyone else in my area who has a dx or suspects they are add or adhd will you get in touch with me. I am so pleased that Gordon from adhddirect has joined. He will be a great source of support to many. He is running a course for parents in April if anyone is near to Glasgow.
Great news about your assessment!! It's weird isn't it, to be celebrating the confirmation of someone being dx with adhd!!!
Never mind it couldn't have come at a better time. We have a new member- madscot, who is desperately trying to find someone who can assess him. Can you tell us the name of the Dr in Glasgow - it would be really helpful.
It is good to have Gordon on board. We most cetainly will give him all our support to get things moving in Scotland!
I found the info about adhddirect throught the forum here. I was so pleased to be taken seriously and was given lots of options and time to decide what I wanted to do. It was me who asked Gordon to join. I was keen for others in Scotland to know that there is a service up here who can provide not only support but also dx and follow it up with support. I had gone as far as I could with my surgery and NHS Highland and was becoming depressed and scared about my future. I honestly feel now that I have a link to support, through not just the forum, but also through adhddirect. In dec and Jan I was at an all time low. I could not exercise due to a wee op and had a lot of time on my hands and found this website and just read and read. I am so full of hope and looking forward to the summer and just to being happy!! I have for the first time chatted to my mum in some depth about ADHD and fell like we have turned a corner. If anyone in Scotland needs any help get in touch with adhddirect to discuss options and if I can do anything regards dx or info please contact me. Yours, with hope and happiness, Shela-ann.
Hi peeps, thought I would just post the recent info Ive just received from NHS-QIS.
Dear Mr madscot
Thank you for the enquiry that you submitted via the NHS QIS mental health inbox. I appreciate that you are feeling frustrated by your recent consultation at the Wishaw Resource Centre and are keen to see some movement with regard to getting recognition and some support to help you to manage the difficulties that you are experiencing. Unfortunately NHS QIS does not have the remit to investigate individual cases such as yours, however, what we can do is try to point you in the direction of resources that might help.
You are entitled to request that your GP arranges for referral to another psychiatrist in your area for a second opinion. NHS Lanarkshire will also have a complaints procedure that you could use to express dissatisfaction with the services that you have received and formally raise the specific issues with the NHS board. As you rightly point out, the NICE guidance (which covers the NHS in England and Wales) on ADHD does cover adults and contains a range of recommendations relating to assessment and treatment services for them. Clinicians working in Scotland work to Scottish Intercollegiate Guidelines Network (SIGN) Guidelines. SIGN Guideline 52 (attached) covers ADHD but only in children and adolescents. At the present time there is no published Scottish guidance or recommendations that NHS boards should provide dedicated adult ADHD services. The SIGN guideline does, however, clearly state that for some people significant impairment from ADHD symptoms will persist into adulthood.
Another avenue that you may wish to try is to link into one of the Scottish ADHD support groups. I’m not aware of a support group in Lanarkshire but you may want to try the Falkirk-based Ecosse ADDers www.adders.org/ecosseadders.htm or Ayrshire-based ADD it Up www.additup.org.uk/. These groups are probably more geared towards supporting parents of children with ADHD but I’m sure will also have experience of supporting people in your situation or will be able to point you in the right direction.
While there is currently no national directive to establish adult ADHD services in Scotland, there is emerging interest within adult psychiatry and NHS QIS is linked into a national special interest group. If you are agreeable, it may help us to raise the profile of adult ADHD if you gave us permission to share what you have raised with the national special interest group. Your email clearly articulates issues that I’m sure you are not alone in facing, and having a real perspective on the difficulties sometimes encountered by people seeking support can be a powerful tool to help drive service development forward. We would of course completely anonymise any information that we used.
I hope that this information is helpful. If you could let us know your thoughts about us using an anonymised version of your case it would be much appreciated.
NHS QIS Mental Health Team
That will be me f**ked then. I was hoping I could get them to try and follow the recommnedations at least. I know it isnt a REQUIREMENT but you would think common sense would prevail. Apparantly not.
Oh and Ive got an appointment to see my MP on 5th June at 11am. Ahl keep bashing away at these people until they accept this is a shocking situation. How can these people live with themselves?
You are entitled to request that your GP arranges for referral to another psychiatrist in your area for a second opinion. NHS Lanarkshire will also have a complaints procedure that you could use to express dissatisfaction with the services that you have received and formally raise the specific issues with the NHS board.
I should have clarified what the intial letter contained really. I sent off letters to a few of these associations to see if I could make this eejit of a Psychiatrist admit he didnt have enough experience to dismiss me or diagnose ADHD. I am furious at the idea of me standing in a pointless queue. I really just want them to admit that they dont have the funds and they dont intend on allocating any anytime soon.
Im going to send them all letters again, reminding them of some NHS expectations for employees, namely:
Part II (B)
We expect that you will:
Strive to play your part in improving services for patients and communities.
Strive to contribute to a climate where the truth can be heard and the reporting of, and learning from, errors are encouraged.
I really should have been a lawyer. I hate arguments though, Im just quite good at finding the niggle.
I thought I might add the most recent information that I have received from Shona Robinson, Minister for Public Health. Its really dissappointing actually. I got my own MSP to write to her and the response was just this generic crap letter about how good they are and how good they are going to be, but.............
Wait for it......
Scotland's 1% of affected people can be treated by our general adult psychiatrists who are trained do so.
It gets worse.
SIGN 52 is being reviewed and published in autumn 2009, and there are currently no plans to include adults at this time.
I am astonished at their attitude to this. If they think I am going to leave this alone they have another thought coming. Believe me if I wasnt medicated I would take the letter and ram in down her throat. Im quite Irate at the letter. I still cannot believe the generic crap that comes out of her mouth about how good the Health Service is and how good they cope, and then say only 1% of the population can F Off, a figure which is way off. And then to say her Psych's are trained to deal with it is laughable as well.
I surely cannot be the only person who is annoyed at this.
I agree - this letter is a load of c**p and written by some ill informed Minister!!
I'm sure you won't let this go unanswered. Given she's a minister for Public health she should be taking account of the cost, not only to individuals but to public services such as the prison population, unemployment, poor productivity etc when she makes this bland statement of "their are no plans to include adults in the new Sign 52 guidance" Where is she coming from - the Dark Ages.
Dear Jack, Thank you for your letter of 17 June to Nicola Sturgeon MSP, Cabinet Secretary for Health and Well being on behalf of madscot125 about services for adults with ADHD. I am replying as I have the Ministerial responsibility for mental health services in Scotland
Mental health is a priority for the Scottish Government and our approach has a whole population focus to maintain the mental health and wellbeing of the people of Scotland and improve the situation for those with mental ill-health. We focus on promoting attitudes and behaviour which lead to improved mental wellbeing; and to ensure high quality, integrated mental health services are available when and where needed for all ages and conditions. This includes those with a diagnosis of ADHD.
This approach is underlined by the recovery principles being firmly embedded in all practices and we are looking to health and social care professionals to work together to provide a more holistic service which specifically addresses the assessed needs and wishes of the service user, and not the diagnosis.
While there are no dedicated adult ADHD service in Scotland for the 1% of the population affected, general adult psychiatrists will routinely treat such patients and are trained to do so.
Madscot125 also refers to the Scottish Intercollegiate Guidleines Network (SIGN) 52. This provides guidance on ADHD in children and adolescents and though it is being selectively updated to be published in autumn 2009, there are currently no plans to include adults.
Madscot125 refers in his letter to the great number of people in Scotland who are experienceing difficulties in their relationships, work and general life. That is why we have a specific commitment to increase the availability of evidence based psychological therapies for all age groups, in a range of settings, and through range providors. To achieve this we are working closely with NHS Health Scotland, NHS Boards and their partners to improve and increase the service capacity needed to deliver on this commitment and meet patients needs better and sooner.
To ensure that patients have swift access to psychological therapies, we will also over the next few months be giving consideration to establishing a waiting time target for these services.
What a load of tosh that letter is. I should get that woman on the phone some time and inform her that her facts are utter crap, and she is needing to brush up on them. In the diary
I like marvellousmatt's idea about getting psychiatrists involved and also the petition, and if I'm remembering what I read correctly, I think we can all sign a Scottish petition, and I remember offering to help. The offer still stands!
btw: NHS Scotland has a legal duty to promote disability equality so by not including adults, NHS Scotland could potentially be in breach of the Disability Discrimination Act!
I think it's worthwhile sending a copy of the Disability Equality Duty for NHS Scotland to that silly minister!
Roland there are parts in that doc that tell me there are more than just the Scottish Health Boards who are breaking the law. I am sure that every Health Board is duty bound by the DDA to provide "reasonable adjustment". As far as Im concerned there are a load of health boards who do not even attempt to change things in a situation where it is near impossible or at least unreasonably difficult to access services.
That would be great thanks. I went down this route because of my own circumstances honeypot but I have met some people who were involved in it also. Apparantly adults were supposed to included in the review, so I dont quite know whats going on exactly. And as for getting involved more actively, im trying to stabilise myself here and thats enough for the present. Getting the MSP involved was a good idea I think. Hopefully he can take the baton and run with it.
I wrote the reply earlier. Used the anger I have in me from Scotland getting pumped
Dear Mr McConnell,
I received your letter and the copy of the reply from Shona Robinson. I must admit to being very disappointed in her response. I don’t know what you thought but to send back a response coloured with generic nonsense about how good they are and the things they plan on doing whilst basically saying adults with ADHD will be getting no services now or for the foreseeable future was not my idea of funny.
If Shona Robinson routinely talks like that when discussing mental health issues then I don’t think she should be responsible for the ministerial duties of mental health. She showed a blatant disregard for the feelings of those with this condition, whilst at the same time trying to make herself look good. Please tell me I am not the only person who thinks that is not the way to discuss mental health issues.
As for her statements and facts, they are outdated and just completely incorrect. She says in her reply that only 1% of the population is affected. I think you will find that a more accurate figure is 5%. There have been a number of studies done in recent times that conclude exactly that.
And her disregard for how big an impact this condition can have on people’s lives is simply more proof of her ignorance on the subject. Recent studies conducted by Her Majesty’s Prison Inspectors concluded that up to 50% of the inmates suffered from some sort of mental health issue. Lancashire Police Force recently started an initiative to try and assist young people like myself from straying down the wrong path, which I very nearly did. I am going to attach a document you may find interesting. Studies conducted by Kirklee Young Offending Team showed that 75% of their 35 young people had learning difficulties.
The point I am trying to show here is that this is going undiagnosed and unnoticed, and young people like myself are being left to get on with things and being shunted around, not quite understanding why things are always going the way they do. Some of them will commit crimes, get involved in violence, have stressed living conditions, always quitting jobs or getting fired, be unemployed frequently, are involved in substance abuse and alcohol. In fact I seen a study which said 25% of alcoholics are ADHD, even though only 5 % of the population suffers from it. Also about 65% of their substance abuse patient group presented with ADHD (“Comorbidity of alcohol and substance dependence with attention-deficit/hyperactivity disorder”, by Ohlmeier MD, Peters K, Te Wildt BT, Zedler M, Ziegenbein M, Wiese B, Emrich HM, Schneider U. Department of Psychiatry, Social Psychiatry and Psychotherapy, 30625 Hannover, Germany. Ohlmeier.Martin@MH-Hannover.de) These are staggering rates and give a small glimpse of what’s happening. I could go on and on.
But looking at that list there, if you think of the bigger economical picture, there is a lot of time and money being wasted by not helping people like myself. Read the document and you will see some shining examples of how things snowball and how much an individual can waste resources, not purposefully of course.
The fact is, if ADHD people were being assisted and understood in the way they should be, then life would be better for them and everyone around them. It would also cost the taxpayers a lot less money and I know if some sort of impact assessment was done on this subject I think everyone would be pleasantly surprised to find that a lot of anti social behaviour would be almost gone, prison populations would descend, substance abuse would drop and a variety of other things would sort themselves out as well. All these things would save money and make our country a nicer place to live for everyone.
I also think that adults with ADHD are being discriminated against with their exclusion from the SIGN guidelines. Why are there not proper procedures in place for dealing with people who present with the condition? There also seems to be no standard’s set out for assessing people and diagnosing the condition. I was sent to a general psychiatrist, and in fairness no man can know everything, but I knew more about the condition than he did. He tried to make out that I couldn’t possibly have the condition as I sat in a chair for 90 minutes and that I was educated. That tells me he is inexperienced in this particular field. I have no argument with that, as I said, we can’t know everything. What I do have a problem with is Shona Robinson trying to tell me that they are trained to deal with these problems. No they are not. If I didn’t have the persistence I would perhaps have given up before I received any help. I’ve met people who have done exactly that. As far as I am concerned, the Disability Discrimination Act says adults with ADHD deserve to be treated better than this. The fact is the DDA says reasonable adjustments should be made to make services more readily available so that people do not find it impossible or unreasonably difficult to locate and attend the services they need. There are also duties imposed upon Ministers to acknowledge where there are deficiencies and try to tackle the problem, rather than talking about completely irrelevant things which they are doing. Is it too much to ask for Ministers to accept there are deficiencies and there always will be, its about doing the best you can by people.
The NHS in England has guidelines for assessing and treating adults with ADHD and I feel we should be developing something similar in Scotland. As I have already pointed out, the costs of setting up and maintaining these services are more than covered by savings in other areas, policing, the justice system, benefits, etc. The bigger picture needs to be looked at. If there was any real research done into the impact of ADHD it would show significant conclusions.
I really hope I have expressed myself properly Mr McConnell and I sincerely hope that you understand the seriousness of the situation for people like me. I have blundered through life for 28 years like a little ball of rage and anger, a really smart and intelligent person but never quite fulfilling the potential due to not dealing with my problems. I am on of the lucky ones who didn’t end up in prison but I’ve had my brushes with the law also. If I’m honest it’s because I’ve been self medicating with cannabis for years. I didn’t realise it at the time but I have been using it to calm myself down to a more effective functioning level. And it’s what has allowed me to gain a BSc (Hons) and go to work. Now that I have my medication I no longer have any real desire or need for it.
I would love you to read these links as they are highly informative of help build a better picture for what I am trying to say.
Nice one madscot. He will probably write back and say "you can't have adhd with that sort of letter writing. Anyway, I'm off now to use my cauldron to conjure up a banshee for my party and to get a fresh wolfskin rug"
I checked out NHS QIS and I don't really see that the public is involved in any kind of meaningful way. My experience with things like Patient Focus and Public Involvement is that it includes sitting through interminable meetings listening to beaurocratic twaddle about stuff that some committee (of self-elected muppets) has already made decisions about.
I checked out the SIGN site and here I also could not see that you can be involved in updating the SIGN Guideline for ADHD (I think the time is past for that), certainly not in the way that AADD-UK was able to register as a stakeholder and provide input to the NICE Guidelines but I'm not sure that really matters at this stage because of what the draft ADHD SIGN says. See following:.
On page 9 it says this:
The NICE guideline includes evidence on the management of ADHD in adults. Current service provision for adults is limited.
On page 31 it says the following:
Will my child grow out of ADHD?
The symptoms of ADHD can reduce in some children as they become older. However, about two thirds of children continue to have problems as teenagers and some of them continue to have problems and need treatment as adults [emphasis mine]
There you go madscot and freewill, SIGN admits ADHD exists in adults!! And that some adults need treatment!!!
So I think letters need to be sent to the trusts, and the top guys in Government, and anywhere else we can think of, as well as the press, and we should play the discrimination card. NHS Scotland could very well potentially be in breach of the DDA.
It seems the Equality Commission and the Scottish Government might actually be aware of this and here's a link to the Equality Commission site that seems to imply this awareness:
Roland, Im rather obsessed with finding a job right now. I can do this, but it requires time. And trying to break my hyperfocus and get away from the job hunt, CV writing, etc is f**kin impossible. LOL. I shall get a job soon and hopefully I can then write something for this. Hyperfocus can be good at times, but it can also be a scourge