The Children and Adolescents with ADHD in Transition between Children’s Services and adult Services (CATCh-uS) project team at the University of Exeter ran a survey in 2016 with the aim of creating a map of existing NHS adult ADHD services in the UK.
Responses to the 2016 survey have been used to create a preliminary map of existing NHS, voluntary and private services for adults with ADHD. This map not only helps inform and improve services for young people transitioning from child and adolescent mental health services to adult mental health services, it also helps adults who need to access ADHD services. Importantly, the map also highlights areas in the UK where there are gaps in service provision.
This map was created, however, from information gathered in 2016 and now needs to be updated. The CATCh-uS team, therefore, are asking people with ADHD, as well as anybody who knows someone with ADHD, or anybody who works with people with ADHD to take part in a new mapping survey.
Here is the live 2018 mapping survey. Please do take part!
It shouldn’t take longer than 5 minutes to complete, it is anonymous and confidential, personal information will not be shared, but most importantly your answers will help update the map of ADHD services.
CATCh-uS is a very important research study of young people with ADHD in transition from children’s services to adult services. It aims to establish how many young people with ADHD are in need of services for ADHD as adults, and investigate young peoples, parents and practitioners views about the transition process. It is also mapping currently available adult ADHD services around the country. It is funded by the National Institute of Health Research and has been approved by NRES South Yorkshire Ethics Committee – Yorkshire & The Humber (REC Reference: 15/YH/0426) and the University of Exeter Medical School Ethics Committee (REC Application Number: 15/07/070). This study has been adopted by the new HRA on 15th June 2016 (“HRA Approval for a study with an existing UK study wide review”). More details are available on the CATCh-uS website.
[Editor’s note: Please be aware that this is satire so should not be read by anyone without a sense of humour. And probably not doctors of the old-fashioned sort. Despite this being humorous, all the excuses and maltreatment are based on real situations we have been made aware of, mostly on multiple occasions. Now read on…]
We’ve all had them in our surgeries.
“Oo Doctor, I think I may have ADHD. I’ve got all the symptoms” they whine, as if they know anything about themselves, their minds or medicine. You’ve probably rolled your eyes reading this and nodded in recognition and thought “If only there was a way to get rid of these timewasters!” Or Attention-seeking Dithering Hypochondriac Dolts, I call them.
Well, I’m here to tell you that there is a way. In fact several ways. Let’s have a look at some of them.
A) Ignore them. Yes, you read correctly, ignore them. Change the subject, ask a diverting question, bring up a topic spoken of earlier, or bring up another topic you hadn’t yet got to but had down to mention. Or even better, just come up with something new to worry them. You know what these idiots are like. Change the subject or give them something else to think about and you know they’ll forget what they were talking about until long after you’ve ushered them out of the surgery. Small note here – as you shove them out, point out that there are more patients waiting and you have to be fair to them. Remind your ADHDolt that you are very important and your time is precious, but they aren’t and their time isn’t.
Now you may worry that this tactic might be seen as wilful negligence, but remember that these blithering buffoons probably won’t remember and also really lack legal credibility. Who is going to believe a wittering serial user of mental health services compared to an upright member of the medical profession? No one, that’s who.
B) Deny, deny, deny. Okay, so you’ve got an ADHDolt that actually managed to stay on topic for more than two sentences, what do you do? This is actually more than one tactic, it is several but using the same method. Let’s look at the sub topics: Deny there is such a thing as ADHD in adults. You are important, your ADHDolt is not. Whatever they have read or cited (or brought in in those annoying little print-outs they do), just tell them they are wrong, and the information is wrong. Tell of them the courses and exams you passed and the years of experience you’ve had, and that you can assure them there is no such thing. If you have the nerve, just bluntly tell them you read an article about it in a newspaper and it said there’d no such thing. Start with a paper such as The Times, but you’ll find, as your experience and confidence grows that you can work your way down to The Daily Mail and The Mirror and they’ll accept it. Tip: try not to even sound positive that it exists in children, let alone adults.
If you do have to admit something, only acknowledge their problem long enough to get rid of them, not long enough to make them feel supported, and certainly not long enough to start any treatment. You should say something like: “I feel your pain. I understand your problems. I acknowledge the difficulties you have. Now piss off.”
C) Use delaying tactics. Even if they do work out who or where to be referred (which is pretty hard for a regular patient, let alone one of these disorganised bozos) – sometimes they’ve been along to one of these egregious “self-help groups” (which must be veritable buffoon-fests!”) or managed to print something off www.aadduk.org – a web site created and maintained by what one can only imagine is one of the world’s greatest slag heaps of tosspots and ne’er-do-wells – and they’ve actually got hold of the NICE guidelines and the name of somewhere/someone to be referred to (and, if out of area, a copy of the rules pointing out you are duty bound to refer there if there’s nothing suitable locally), delay!
Tell them you’ll think about it, or that you’ll look into it, to get them out of your office. Then do nothing. Most won’t remember. A good trick that has worked for a lot of people is to simply agree with them (yes, agree!). Tell them you’ll refer them. Then do nothing.
Here’s a great example of tactics I have to take my hat off to. A woman was worried about having ADHD and sought an assessment. Her children and husband all had (and still have) varying degrees and combinations of ADHD and Autism Spectrum Disorder. She was referred to the local service but didn’t hear anything for a while. Three times she followed it up and each time was told she’d hear something within two weeks. Needless to say, each deadline sailed by without her hearing a dickybird. She went to one of these loathsome busybodies that try and help and advocate for such people. The busybody complained and the practitioner was able to come back with not only a bunch of the usual excuses (someone’s on holiday etc etc) but also an absolute blinder. People being assessed for ADHD should chase up their own cases because… wait for it… it empowers them! Genius! Make it difficult for them, ignore them, sideline them and it is good for them! It’s part of the treatment! The sods should be grateful. Punch them in the face and then tell them they should thank you. Masterful use of delaying tactics there, followed up with an assertion so utterly outrageous it is almost impossible to counter. Full marks to whoever thought that one up.
Another brilliant delaying tactic is to find some other problem they’ve got and use that to avoid treating the ADHD. People who have had lifelong ADHD almost always have had anxiety and depression because of it. Just say that you have to treat the depression and anxiety first. Of course, if they go on bogging up their lives because of the ADHD they’ll go on feeling depressed and anxious, so you never have to treat the ADHD!
Quite a few have co-morbid Autism Spectrum Disorder. Get them on that. If any have mood swings or anger management problems, and they show them on front of you (or even a member of staff), you can bung them out on the spot for being abusive, and anyway you can put down “difficult patient” in their file’s private bit.You may even be able to get them banned from almost all the primary medical services in the whole area.
Or put them down as having a personality disorder (there are several, take you pick). A lot of areas don’t treat personality disorders so that finishes that, but even if your area does have such a service, and you actually think the patient does have a personality disorder, just treat them for that alone. Don’t make the mistake of admitting that it is possible to have ADHD and something else at the same time.
If you didn’t want to see people with mobility problems, you could agree to only see them in an office that is up three flights of stairs with no lift. Do the psychological equivalent to the ADHDolts. They just don’t have the gumption or organisation to stick at anything so just keep giving them hoops to jump through.
D) Divert. If denying or delaying doesn’t work, divert. Send them to the wrong type of therapy – in particular to a therapist that knows little of ADHD. This is widely practiced. One good example we know of was someone who had an assessment saying “Emma doesn’t have ADHD because she can concentrate sometimes.” [Editor’s note: if you don’t know why this is nonsense, then you really don’t understand ADHD. Name changed, BTW.]
Only a psychiatrist can diagnose ADHD so make sure to send patients to anything but a psychiatrist. Then, even if the person does realise the patient has ADHD, there is nothing they can do about it. That works so often, and even now never fails to make me laugh!
E) Discontinue. But, just suppose they’ve previously been treated by one of the increasing number of modern goody-goody doctors (who are letting the side down quite frankly). Suppose they actually are getting some treatment (thankfully probably only medication on a long-term basis) all is not lost. Get them off it!
There are all sorts of excuses, sorry, I mean reasons. Age is a good one. Almost every complaint treated is treated for the whole of the patient’s life, but sometimes they’ll believe the age thing with ADHD.
Keep doing blood tests. Liver ones are good, but do as many as you can. You might not take someone off statins at the first sign of liver problems, but do so with ADHD meds.
If any one of the possible side effects even if unlikely occur (and there’s a huge list on the leaflet with the medication – as with any medicine the leaflet has to list even the really unlikely and unproven ones), take them off. Now arguably you are supposed to refer them to an expert, but hey, just stop the prescription and let the ADHDolt argue. To see a specialist they have to go through you!
Depression and anxiety are great excuses. In one list of possible but unlikely side effects is “Behaving With Excessive Cheerfulness And Activity”! A happy productive member of society? We can’t have that. Get them off the stuff at once!
Oh, and any possible addiction or substance abuse even if you only have circumstantial evidence is a great excuse to get them off the meds. Now a lot of these whiners say they sometimes have trouble remembering to take their medication, which on the face of it looks rather the opposite of addiction. Have you ever heard an alky exclaim, “Damn, I forgot to drink vodka today!”? But remember, what you feel about the matter is a much better guide than what the patient reports.
F) And finally, if all else fails, remember to stigmatise them. The poor little darlings, because of their ‘life difficulties’ become sensitive to rejection. (Let’s be honest, if they didn’t keep claiming they had anything wrong with them, they wouldn’t keep getting rejected!) Be patronising. Ask them if they get a buzz off the meds. Tell them they are lucky to be seen at all, let alone diagnosed. Tell them how controversial the whole topic is, how expensive the drugs are, that they aren’t trying hard enough (especially on timekeeping – even if your surgery habitually runs late). After all, shame has been shown to work so well with topics such as addiction and obesity, and, let’s be honest, and the GUM clinics are a disgrace the way they go around treating people for diseases in a non-judgemental way. Let’s hope it doesn’t spread to the rest of the medical field or well end up letting these ADHDolts off the hook for their moral failings!
Goodbye and Don’t Forget To Grind The Bastards Down!
[Editor’s note: We would be delighted to hear your personal experience of trying to get assessed or treated for ADHD in the UK – we may be able to do a follow-up article. Please contact the (real) author: email@example.com
If you have or might have ADHD or otherwise been affected by this article please come to an ADHD support group or join our forum, and if you are having trouble getting treatment Here’s the relevant page on NICE, and here’s a summary of your rights and here are some more – try printing them out and taking them with you (sorry, currently in England, other regions to follow), and of course, please tell your story be it gruesome or funny – they’re often both – to Aethelred The Unready who is currently saddling his horse to sally forth against the ranking hordes of Schweinekopfs.]
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It was originally published here.
The following has been taken from the introduction to an Expert Policy Paper that explores the reasons why transitioning from child to adult mental healthcare is problematic and challenging. We’ve put a link to the full paper at the end of the following introduction:
Transition to adult services is often a difficult time for young people living with a mental
health condition. The journey through adolescence into adulthood is a time of significant
physical, psychological and social change not only for the adolescent, but also their
families. Overall rates of mental health problems can also increase during adolescence and issues become more complex, and in some cases serious disorders such as psychosis
may emerge. During this period, adolescents may also have a greater tendency for risky
behaviour, become lost in the system between child and adult mental health services and are also at greater risk of disengagement from services.
This Expert Policy Paper was developed on the basis of an Expert Working Meeting on
Mental Health and Transition, held in Brussels on 11 July 2017. The meeting brought
together expert clinicians (psychiatrists and neurologists), patient representatives, academics and mental health advocacy groups to explore the reasons why transition of care is currently suboptimal, discuss and agree on the principles for good transition and develop practical recommendations for improving transition to adult mental healthcare services. The group included expert stakeholders from the field of transition of care, mental health in general and attention-deficit hyperactivity disorder (ADHD).
The Expert Working Group highlighted that the problems associated with transition from child to adult services are not disease-specific; they apply to all mental health disorders, for example, epilepsy, autism and social phobia. However, to identify practical policy solutions, the Expert Working Meeting focused on ADHD as a case study in the analysis of the problems, barriers to change and potential solutions associated with transition of care.
ADHD is a diverse condition characterised by symptoms of inattention, hyperactivity
and impulsivity that can have a significant impact on patients’ lives. ADHD is relatively
common and often persists into adulthood. Despite this, access to adult ADHD services
and support is generally poor, resulting in frequent gaps in care.2,11 For these reasons,
ADHD provides an example in which to frame transition to adult services across the
mental health sector.
If you would like to read the full Policy Paper, please click on Bridging the Gap
Researchers for the study of Comorbid Conditions in ADHD (CoCA) at King’s College London are looking for adolescents and young adults aged between 14 to 30 years, who have a current diagnosis of ADHD and are on stable treatment for ADHD (i.e. medical or non-medical, or no active treatment at all), to take part in a new research study investigating the use of exercise and bright light therapy to improve low mood, weight problems and general health. Participation involves one of the following 10-week interventions as well as five visits to their research centre in south London for a number of physical and mental health assessments.
(1) Exercise programme – to evaluate the effects of exercise
(2) Bright light therapy – to evaluate the effects of bright light
(3) Treatment as usual – to provide a control group with no additional interventions.
1. Diagnosis of ADHD
2. Stable treatment as usual
3.Age 14-30 years old
4. No diagnosis of autism spectrum disorder, bipolar disorder, or any other severe psychiatric disorder requiring inpatient treatment
5. No severe medical or neurological condition not allowing bright light therapy or physical exercise
6. No history of epilepsy
They will help make the travel arrangements as convenient as possible and will reimburse all of your travel expenses. They will also provide a reimbursement of £200 for your time and effort, which will be paid in instalments for each of the five appointments attended.
This particular project is one part of a large international & collaborative ADHD research project (launched in April 2016) called “Comorbid Conditions of Attention deficit/hyperactivity disorder (CoCA)”. The aim of CoCA is to understand how and why ADHD often occurs alongside other physical and mental health problems, including anxiety, depression, substance use disorders and obesity. King’s College London’s Institute of Psychiatry, Psychology & Neuroscience (IoPPN) is one of 17 institutions across nine countries to receive funding for this project.
Through CoCA, the researchers hope to raise awareness of ADHD, reduce the stigma associated with ADHD, and empower prevention and therapy approaches as well as providing new tools to prevent ADHD from escalating into additional disorders.
How to get involved:
For further information as well as contact details please click on the following links:
Here at AADD-UK we avidly followed the news about mental health issues during Mental Health Awareness Week. We admired the bravery of those telling their own stories, we retweeted some general mental health links instead of those that only dealt directly with ADHD, all the while preparing for our 10th Year Anniversary by revamping our website. Then suddenly we realised we’d forgotten the elephant in our own parlour! So we decided to write, just before the week ended, our own position for Mental Health Awareness Week.. Here it is:
First, we thanked the Mental Health Foundation for hosting the week, and thanked them for commissioning the survey and consequent report “Surviving or Thriving? The state of the UK’s mental health.” The authors of the report wrote that despite “many areas of advances in human health we are not seeing these reflected in mental health. If anything, the signs are that we are slipping back.” They backed this up by shockingly disclosing that only 13% of those surveyed in England, Scotland and Wales had “high positive mental health” and that nearly “two-thirds of people say that they have experienced a mental health problem” and others were clearly “just about surviving.”
The authors further reported that those of us living with either low household incomes or unemployment have worse mental health than those employed at higher incomes. 3 in 4 people at the lowest income level, 85% of unemployed people, 7 in every 10 women, 7 in every 10 young adults (aged 18-34), and 7 in 10 people living alone experienced poor mental health. Additionally, the authors quoted the “Mental Health and Wellbeing in England: Adult Psychiatric Morbidity Survey 2014” (published last year) which revealed that every week 1 in 6 adults experienced a “common mental health problem, such as anxiety or depression. 1 in 5 adults reported that they had considered taking their own life at some point.”
I sat in silence and reflected upon those numbers and felt an overwhelming sadness. So much unnoticed desperation and despair! Swiftly followed by anger; “Who can I blame?” “Where shall I point my finger?” You see, all this correlated almost exactly with our own experiences in the ADHD world.
It’s been almost 10 years since we set up AADD-UK with hope and optimism. During that 10 years, the National Institute for Health and Clinical Excellence (NICE) published ADHD Guidelines in which adults were included for the first time. Of course there was some initial resistance but over the years more and more professionals became interested, more and more moved into the field, more and more research confirmed ADHD as valid (even the usual tabloid suspects now, tentatively, report positive ADHD stories) and there are more ADHD services in the UK than the 3 that existed 10 years ago.
But all is not well! As awareness of ADHD grows, funding for ADHD services dwindles. Some GP’s, due to funding shortages, are reluctant to refer us to services. In truth, not all of the ADHD services have enough funding to meet the NICE Guidelines. It’s even been suggested, in one known circumstance, that the Guidelines be disregarded. A couple of services have surreptitiously tried to close. Some have decided not to publicise their contact details for fear they’ll get more referrals than allowed for by their funding. Of course, this means that waiting lists are getting longer and longer; even up to 2 years long! It’s true that gate keepers and sign posters cheerily point us to psychological therapies suggesting we use them while waiting. But guess what? Yep that’s right! We’re shuffled onto the end of another waiting list where some of us must try not to listen to whispers about the low quality of the offerings. So, there we are, stuck waiting, struggling to cope with abysmally low self-esteem, hurting, lonely, barely surviving. What does this matter when it’s said that ADHD makes us resilient, that we’re used to hard knocks, that we’re survivors? It matters because we understand too well that surviving is not thriving and that knowledge is painful!
And what about those of us who’ve been diagnosed and are taking medication? We’re all thriving right? Well not exactly. Medication is indeed all that some of us need. We can now concentrate as well as focus better. That helps us to, at last, move on and up. It helps us to feel relief as well as feel the joy of achievement. Some of us can even choose between seeing a consultant privately for follow-ups or waiting months to see the same consultant on the NHS. There’s a group of us too who, after a competent diagnosis of ADHD, don’t need any further help, not even medication. It’s enough that somebody listened, took us seriously, evaluated patterns underlying our difficulties, and found a way to help us understand. That’s all we needed to find our own way, to thrive and flourish.
Some of us, though, have been so pressured and battered by an uncomprehending and stigmatising life that the clarity that comes with medication also carries the aching revelation that our graceful childhood spirits have turned into cut-down and subjugated ghosts. Taking the right medication is not all we need. Before we can move from surviving to thriving we need help, we need to rediscover our true spirits, our real potential. Yet we’re stuck in the low income, or underemployed, or unemployed bracket. So we ask the NHS for help, get sign posted to psychological therapies, by the same cheery folk our clan members encountered, and off we shuffle to join the end of a waiting list. There we are waiting, masks firmly in place (we don’t want pity), acting as if we don’t care but feeling worn-out, inside crying, mourning for our lost and trusting childhood. We’re surviving and that’s all!
Still, at least the mere fact that we’re waiting allows us a bit more hope than those of us who’ve not been noticed. Some of us in this group are being shuffled from one wrong diagnosis to another wrong diagnosis, from one wrong medicine to another wrong medicine. Never having our true reality heard or acknowledged. Some of us become disheartened, lose faith and sink into helplessness. And then what about those of us who learn to believe from early on that we are seemingly born to live life as a failure, never understanding why that appears to be our fate? All of us too are barely surviving!
It’s such a waste because every single one of us with ADHD has the potential to flourish. We would love to use our strengths and abilities to help others, to be a benefit. We don’t need much. Just the right attention and the right support at the right time. Actually you know what? That’s not hard to provide!
Now I’m angry again so I’m jumping right off the fence and pointing my finger squarely at you, the Government. I’m pointing at you, Theresa May, as well as at you, Jeremy Hunt. If you get back in charge, for goodness sake stop with your wasteful changing, privatising and building inequality into the health service. Instead, if you really care about helping people to thrive, helping the country to prosper (you do, don’t you?), stand back and for once look at the big picture.
The prevalence rate for children with ADHD is between 5 to 7%, of whom approximately 65% will continue to experience symptoms in adulthood. In other words, roughly 3% to 4% of all adults have ADHD. To make it clearer, about 1 in 25 adults have ADHD. That’s a lot of us! That’s a lot of us costing you a lot of money!
Leaving us unrecognised, undiagnosed, untreated or treated ineffectively, or pushing us onto waiting lists is costing you, the Government, a lot of money in lost tax revenue, inappropriate treatments, repeat visits to A&E, clearing up after our accidents, looking after our brothers and sisters in prisons, and so on and so on (you want evidence, ask and we’ll give it freely). It’s cheaper, far cheaper, to increase NHS mental health funding so that all of us can receive proper help! We want to use our strengths, abilities and skills. We can use them to thrive and flourish!
And here’s a final note, the need for mental health awareness and funding did not disappear with the end of Mental Health Awareness Week. The two thirds of people living in England, Scotland and Wales who’ve experienced mental health problems, including all of us with ADHD, are still here on Monday morning. Funding and treatment for everybody experiencing mental ill health is still needed and is still vital. With that, and with preventative care, all of us will thrive and flourish and so too will the country.
I’ve had my say for now! It’s time for you, the Government (whichever of you ends up in charge) to listen and act!
Background and context
This survey came as a result of the researcher’s collaboration with AADD-UK and his regular attendance to 4 support groups which generated questions in relation to the development of adult ADHD support groups; how many groups are there in the UK, what is their membership and what do they do? The numbers of groups making contact with AADD-UK and its website has been growing in the last five years; they are very diverse in their organization, in what they provide and so are the local contexts in which they evolve. But they all have in common that they provide a much needed space for information, help and support for individuals who are or have yet to be diagnosed with ADHD as well as for their relatives and partners.
The aim of this survey was to provide an updated picture of the state of adult ADHD support groups in the UK; we hope this would in turn help individuals, families and professionals in accessing updated information on the AADD-UK website for better local signposting.
SUMMARY OF FINDINGS
1. Significant increase in numbers of support groups, starting from 2009, peaking in 2011 and an increase of membership.
It is worth noting a rapid increase in numbers of groups since 2009, but it is unclear if this trend will continue. Some groups have also folded in the last 2 years, mainly for reason of lack of funding and so the present economical context may make it difficult for some groups to develop or sustain their activities. An increase in membership has also been observed in the three groups the researcher has had contact with since 2009; the average attendance then was of 11 members per meeting, it is now in 2013 an average of 19 members per meeting with a gender mix of 52% male, 48% female.
2. 9 groups out of 23 , just under 40% , receive funding
There are more groups receiving funding than ever before, and the more recent groups seem very good at that. More data is required to understand how funding is accessed, if groups are set up as charities, social enterprise and how sustainable the funding is.
3. Three quarters of the groups are run by adults who describe themselves as having ADHD.
Despite the difficulties that ADHD can produce the large majority of groups are run by facilitators that identify themselves as having ADHD, and some do this in partnership with people who do not have ADHD. Out of the 14 new groups that have formed since 2009, 13 of them have been formed by adults identifying themselves as having ADHD. More research would help in understanding what their experiences bring in the running of a support group.
4. Wide range of activities, including 6 groups providing structured courses.
The groups are adapting to the local context and the needs of their members with ADHD and provide more and more services that are not provided anywhere else. But the main activity the groups have in common is the support and help they give to each other through the sharing of their experience of living with ADHD.
We believe these findings show a vibrant and growing community of support groups for adult with ADHD that are resourceful and determined to provide a safe place to share experience and information.. This survey highlights some of the common points between groups but the diversity between groups is also worth noting, each group is unique in its history and style and respond to particular local circumstances. The full survey is available in our library here.
Claude Jousselin and the AADD-UK team.