Tuesday, 28 July 2020: Good News
On Tuesday, 28 April 2020, the Bristol Adult ADHD Support Group, the Bristol, North Somerset & South Gloucestershire CCG (BNSSGCCG) and Avon and Wiltshire Mental Health Partnership NHS Trust (AWP) agreed to form a joint, multi-partner, collaborative working group with the dual purpose of addressing the waiting list issues as a priority while, at the same time, methodically analysing problems that led to the waiting list and then devising and implementing solutions.
The end goal of the working group is to have an Adult ADHD Service that assesses people within the 18 week target and is cost effective (now and in the future), that effectively and efficiently integrates care, is high quality, safe and gives service users a positive experience. It will meet legal duties, NHS Quality Board’s definition of quality (safe, effective, caring, responsive and person-centred), as well as NICE Guidelines & Standards.
It will be an Adult ADHD Service that everyone can be proud of!
On Friday, 5 June 2020, formal Terms of Reference for the working group were adopted and we agreed ways of working and communicating.
The Core Working Group (CWG) is now having weekly working meetings and is updating the Full Working Group (FWG) on a monthly basis. In turn the FWG is giving monthly progress reports to the CCG’s Commissioning Executive Committee (CEC) for their feedback and/or approval. BTW: we are all working & meeting online & we are working well together.
We are working as hard and fast as we can while balancing accuracy with speed. The waiting list is an urgent priority.
We will periodically update this page with progress reports.
Monday, 17 February 2020
I’m afraid we were overly optimistic as progress seems to have stopped so today I sent two emails as follows:
I realise that everyone is busy but it has now been 3 weeks since I sent the list of dates for which we are unavailable for a meeting and I have not yet had a reply.
Do you know if any progress has been made in arranging this meeting with the CCG, [Clinic staff], members of the joint CCG and AWP ADHD Working/Project Group, and [seAp Advocacy]?
To date, it is 6 years and 10 months since the funding level for the clinic was set and it has been 5 years and 10 months since the then Bristol CCG recognised that the funding level was inadequate.
Furthermore, the Bristol Adult ADHD Support Group met on Friday, 14 February, and it rapidly became apparent that the waiting list (2 years and growing), without any doubt, is putting already distressed people at increased risk of harm. In addition, the group members already assessed strongly reiterated their support for the clinic as well as their high regard for the staff whilst also expressing concern that the ever increasing waiting list is now putting too much pressure on the service as a whole.
As a polite reminder, I have reattached my original letter of Friday, 6 December 2019; sent 2 ½ months ago. Everything stated in this letter regarding the CCG’s responsibilities as well as our offer of help still stands.
Please note, I have also cc’d Mr John Penrose, MP on this email since I understand he is making enquiries into the inadequate funding for NHS ADHD services on behalf of constituents and I am also his constituent.
43 working days have now passed since you received my FOI Request.
During that time the deadline for the CCG’s response has been extended twice from the original date of Tuesday, 14 January 2020; first to Tuesday, 28 January (need time to finalise the response) and then again to Monday, 3 February 2020 (for review by a Director).
It has now been 10 working days since the CCG’s last deadline expired. Could you please, therefore, conduct an internal review into the handling of this matter. My original request for information can be read at the end of this email chain.
Wednesday, 22 January 2020
We’re making progress, slow inching progress, but progress nevertheless. We filed a Freedom of Information request with BNSSG CCG on 12 December 2019 for documents they described in their minutes (discussions about the Adult ADHD service) but had not made available online. The CCG, in response, told us they needed more time to ‘finalise’ their response and they expected to release the information by 28th January.
As a result, we’ve asked that our meeting take place in mid February so that we have time to review the documents. And we’ve listed the other people that the CCG needs to invite to the meeting ‘in the interests of transparency and because [the waiting list] is a very serious problem that needs an open and collaborative partnership between the CCG, AWP, and service users.’
Thursday, 9 January 2020
Since we filed our complaint with Bristol, North Somerset and South Gloucestershire Clinical Commissioning Group (BNSSGCCG) on 6th December 2019, some progress has been made as follows:
1.BNSSGCCG have proposed that they hold a meeting this month (date tbd) with us (service users), the ADHD Clinic staff, and others from Avon and Wiltshire Mental Health Partnership NHS Trust (AWP). We are now waiting to hear from all attendees.
2. The CCG have also sent a proposed agenda which needs some amendments.
3. We have notified Healthwatch Bristol, North Somerset and South Gloucestershire (Healthwatch BNSSG) about the problems with the waiting list and sent them a copy of our complaint. We will be talking with them tomorrow, and they will be investigating the issues around the waiting list. We have also been in communication with Healthwatch England who are aware of our complaint. Healthwatch England have said that they will assess and evaluate the results of Healthwatch BNSSG’s investigation for national implications.
Saturday, 7 December 2019
The waiting list for the Bristol NHS Adult ADHD Clinic is now 2 years (plus) for people living in Bristol. We weren’t sure what Bristol, North Somerset and South Gloucester Clinical Commissioning Group (BNSSGCCG) were doing about it, if anything, so we decided to try and find out.
First, here’s a little bit of background. Clinical Commissioning Groups (CCGs) were created in 2012 when the new Health and Social Care Act came into being and they opened their doors on 1 April 2013. The CCGs are membership bodies made up of the local GP practices and they are led by a governing body also made up of GPs some clinicians, nurses and lay people. The CCG buys (commissions) all the health services (physical & mental health) that we use within our local areas. For example, the BNSSGCCG has a contract with Avon & Wiltshire Mental Health Partnership NHS Trust (AWP) for the Adult ADHD service for all who it in the Bristol, North Somerset and South Gloucestershire Area.
Now before buying a service such as the ADHD Clinic, the CCG should determine the level of need in the community as well as the amount of funding they’re going to need for the service currently and into the future. In other words they need to plan for increasing demand They should also plan for future demand as people become more aware of ADHD and ADHD services. And this is where things can go wrong as it has done for BNSSGCCG.
In 2013, for whatever reason they didn’t plan for the number of people in the greater Bristol area who would need an ADHD service and they didn’t pay attention to the increasing number of people being referred to the clinic and they didn’t listen to the Clinic’s warnings. And now there’s a very long waiting list.
And now we go back to where we left off in the first paragraph of this post: we were going to do some research. We did, and didn’t like what we found, so yesterday we sent BNSSG a letter with an appendix containing 33 pages of evidence. The appendix can be read here and the letter is below:
6 December 2019
Dr Jonathan Hayes, Clinical Chair
NHS BNSSG Clinical Commissioning Group
Dear Dr Hayes,
Re: OPEN LETTER: Serious concerns about BNSSG’s handling of the Adult ADHD Service waiting list
I am the Chair of AADD–UK and the founder and facilitator of Bristol Adult ADHD Support Group; both running continuously for 12 years. I’ve contributed to the NICE ADHD Guidelines and Quality Standards and I’m a member of the NICE ADHD Implementation Group. The latter was charged by the Department of Health and Social Care with highlighting challenges and developing solutions for implementing NICE NG87 ADHD. Commissioners are responsible for enabling patient use of the Guidelines not only within the context of funding but also within context of their legal duties of eliminating discrimination, advancing opportunities and reducing health inequalities.
I am writing this letter on behalf of service users who potentially have ADHD as well as those who have the diagnosis. The Bristol Adult ADHD Service does not know that I am writing this but as a matter of courtesy I have sent them a copy. The number of people expressing distress about the length of the waiting list for the Bristol Adult ADHD Service is steadily increasing. Since I needed to understand the background to this situation, I read all available BNSSGCCG’s minutes and reports. And I now have very serious concerns about BNSSG’s management of the waiting list.
In April 2014, one of the CCG’s operational delivery projects for the ADHD service was to ‘achieve funding’ to resource its then current growth. Since that date, referrals have risen exponentially but the CCG left the funding at the 2013 level—despite receiving warnings from the service. They have also been underspending on ADHD services to help offset overspending on IAPT and mental health placement commitments. The Clinic staff from 2014 to date, continuously tried to increase capacity to match the ever-growing demand until it seems they could do no more. The CCG refused to increase funding and favourably compared the 2-year ADHD wait time (keeping ‘inappropriate costs’ down) with the 2-week wait time for Cataract surgery. Furthermore, there’s no evidence the CCG made any effort to understand the needs of people with ADHD. There’s also no evidence of engagement or involvement with patients. See Appendix A for details, comments (blue text), as well as questions for the CCG (green text) to answer.
The CCG’s decisions and actions means it is violating the principles, values and objectives as set out in their ‘Constitution’, their ‘Equality, Diversity and Inclusion Strategy’, their ‘Ethical Framework for Decision Making’, their ‘Procurement Policy’ as well as the ‘NHS Constitution’, the statutory guidance for ‘Patient and Public Participation in Commissioning Health and Care’ and the ‘Good Governance Standard for Public Service’.
Furthermore, these decisions and actions have potentially put the CCG at risk of being in breach of their legal duties to reduce inequalities, eliminate discrimination, promote involvement of patients and obtain appropriate advice as set out in the Health and Social Care Act 2012 and the Equality Act 2010.
First, I ask the CCG to review their decisions and actions in line with these principles, values and legal duties and to make amends. Secondly, I ask the CCG to answer my questions in Appendix A.
I have written this letter, however, not just to express my serious concerns and to ask for amends, but also to offer my help to the CCG. I can help the CCG understand the importance of a fully functioning Bristol Adult ADHD Service. Indeed, it is held in high regard by service users. Appendix C contains lists of service user comments extracted from the ADHD Service’s quarterly and annual reports (released by the CCG in response to a Freedom of Information request). I can confirm the compliments in these lists match the feedback I hear at support group meetings as well as those from my networks. If anyone at the CCG is interested in learning about the lived experience of ADHD, I can help with that too. In fact, I am willing to invite relevant personnel to support group meetings so that they can directly hear from others about their needs.
ADHD is a serious neurodevelopmental disorder that can affect about 2-4% of adults. It is complex and difficult to diagnose. Many adults who were not diagnosed in childhood or were misdiagnosed will have developed co-existing disorders which act to amplify the symptoms and increase the complexity of assessments and diagnosis. ADHD symptoms can cause significant impairment across all domains of adult life (e.g. interpersonal relationships, education and work) and negatively impact health-related quality of life. It is cost effective to fund appropriate and timely treatment.
Please respond by Friday, 20 December 2019. I am currently considering further actions.
[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: firstname.lastname@example.org
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