Those of you who know Professor Nutt may like to listen to this recent BBC programme:
Here’s a nice article from “Fabulous” (a magazine that comes with the Sun on Sunday), Francesca is a stalwart of the Brighton adult ADHD group.
Procrastination is more or less a way of life to people with ADHD, especially those with the inattentive sort, so this programme may be of interest (but we’d be surprised if they mention ADHD – let’s see)…
We had a recent enquiry as to whether medication for ADHD has an effect on heart rate and blood pressure. Intuitively one would think that the stimulant medications, at least, would raise them, and many people are of this opinion, however the research does not always support this idea.
Here is a paper on the subject by researchers at St Mary’s Hospital, London, that suggests there is harldy any effect at all:
You may like this video:
There have been reports of healthcare being rationed in various media. We note, however that the Government has said this is wrong.
From today’s news:
Health minister Simon Burns described such practices as “unacceptable”.
“If local health bodies stop patients from having treatments on the basis of cost alone, we will take action against them.”
Full story here:
The article has a space for readers to write in their own experiences. Please could anyone with ADHD (or suspected ADHD) who has had difficulty or specifically is now having trouble getting a referral write in. It could make a huge difference. No matter that the article doesn’t mention any mental health issues, they are equally valid when it comes to needing treatment and this needs to be said.
Do you ever need someone to e-mail you to remind you of something but have trouble finding someone reliable enough to do it at the right time, or at all?
A web service www.followupthen.com will do it for you. There are several ways to set up reminders, including by e-mail, and you can copy people in. Have a go and let us know what you think, or even let us know your own top tip.
ADHD in the news, but maybe not in the best way…
Our Bristol support group was featured on BBC Radio 4’s Inside Health, part of the ‘Medical Matters’ strand.
Probably nothing vintage students of ADHD won’t already know, but a good introduction to adult ADHD and very good for getting the word out.
And you should be able to find the podcast version here (useful if you want to listen on MP3 player or to keep on your computer and it might be better for people outside the UK.)
Now, does anyone know who we need ot speak to at the BBC to put a link to us on their relevant page?
The situation in Scotland has been difficult. Provision of services for adults has been poor to non-existent (although that sums up the situation for most of the UK with one or two notable and welcome exceptions) and, to make matters worse, the NHS guidelines for treating ADHD in Scotland only cover children!
So we are delighted to have received this letter:
I am an occupational therapist working in a small project team in Edinburgh. We are hoping to establish an Adult ADHD Team within Lothian the first of its kind in Scotland and would like some service user feedback. We are tasked with looking at patient pathways, training of staff/general public, developing treatment resources and developing a shared protocol for medication. We believe that user involvement is vital and hope to get some information via the questionnaire attached. We would value it if you could circulate this to adults with ADHD that you may be in contact via your organisation. We have a tight time line for the project with the service to be up and running by May. We would therefore require feedback by no later than the end of April. If you would prefer to contact me by phone you are most welcome. We look forward to your responses.Catriona DillinghamCatriona.Dillingham@nhslothian.scot.nhs.ukSenior Occupational TherapistNorth West Primary Care Liaison TeamBase : Craigroyston Health Clinic1B Pennywell RoadEdinburghEH4 4PHTel: 0131 315 2026Fax: 0131 343 2416
Service User Questionnaire
1) How old were you when diagnosed with ADHD?
2) How would you describe the impact of having ADHD as an adult on daily life? And which parts of daily living are most affected? Eg managing money, organising the house, socializing, working, building relationships etc?
3) What is your diagnosis ‘journey’?
4) What difference do you think it has made having that diagnosis both positively and negatively?
5) We are putting together training for a wide range of health professionals about Adult ADHD what specifically do you feel it would be useful for them to know?
5) We are developing an awareness raising campaign for public, so what you think would be effective here?
6) What are your experiences of taking medication?
7) Have you wanted to take medication as an adult?
8) What supports have been useful to you through your diagnosis/ experience?
9) What self-help materials or information has been useful? (feel free to send copies!)
10) What coping strategies have you employed during your time with this condition? What has helped, and what would you suggest to avoid?
Thank you for your feedback
Three actions by NHS Trusts and Commissioning Groups in Cambridgeshire are restricting access to NICE recommended treatments for people who are diagnosed as adults with ADHD.
First, the long-standing & pioneering adult ADHD clinic at Addenbrooke’s in Cambridge has been forced to close due to lack of NHS funding. Secondly, NHS Cambridgeshire and Peterborough Public Health Network recently implemented a “low priority policy” for prescribing Methylphenidate, Atomoxetine, and Dexamfetamine for adults that were not diagnosed by the NHS as children or adolescents. And thirdly, in July 2011 the Cambridgeshire Joint Prescribing Group designated these 3 medications (as prescribed for adults who were not diagnosed as children by the NHS) as Double Red. The Double Red classification means that they will not fund the prescribing of these 3 medications for adults who were not diagnosed as children or adolescents by the NHS.
AADD-UK has completed a scrutiny of the briefing paper in which the new “low priority policy” was proposed and have now written to Sir Neil McKay of NHS Midlands and East (and 8 others) requesting that the decision to implement the new policy be reviewed, and also that we be provided with written answers to our questions. With the letter we have enclosed copies of the briefing paper, the new policy, as well as a patient information leaflet which purports to explain the new policy. We have inserted our comments, recommendations, and questions into these documents. You can view the letter and documents at the following links:
Recommendations for people living in Cambridgeshire
For those of you who have been affected by this situation, we strongly urge you to file complaints with the Patient Advice and Liaison Service at the following:
1. NHS Cambridge: Freephone: 0800 279 2535 or 01223 725 588 or by email firstname.lastname@example.org or write to them at Patient Advice and Liaison Service, Lockton House, Clarendon Road, Cambridge CB2 8FH
2. NHS Peterborough: Tel: 01733 776283 or by email PALSTeam@peterboroughpct.nhs.uk, or in writing to PALS, City Care Centre, Thorpe Road, Peterborough PE3 6DB.
Also, if any of you would like to help the local ADHD support group fight this, please contact Rebecca Champ. You will find her email address and phone number on her website: ADDventure Within.
There is an article in Psychology Today about adult ADHD. It doesn’t really tell any of us with it anything we don’t already know, saying the problems that come with ADHD are usually: self/time management, self organising and problem solving, self-discipline (because we’re all moral retards right?!), self-motivation, self-activation and concentration.
We have to applaud the article though, because it is in a pretty mainstream publication and so helps get teh word out to the millions and millions of people who either haven’t heard about adult ADHD or just refuse to accept there is such a thing.
A while ago I posted about how it is the ones without ADHD that are the real loonies and the rubbish advice they give you. I think I mentioned the (un)helpful advice of using a diary when we all already have many diaries. The same applies to lists. You have so many lists that you actually have started to make a list of lists, at least once, right?
Anyway, great minds think alike, or at least the ADHD ones do, since we all encounter similar problems including getting advice to make lists. Here’s what Kim Kensington has to say:
ADHD gets a mention in New Scientist again this week, along with schizophrenia, autism, depression and a few other disorders. The article is here, but you may need a subscription (so pop out to a good bookshop and read it there before you decide to buy).
Here’s the bit that mentions ADHD:
Such adaptability would have been crucial in the past 50,000 years as our ancestors migrated around the world, and it turns out that the gene responsible for SERT is among many that evolved rapidly during this period (see The 10,000 Year Explosion by Henry Harpending and Gregory Cochran, Basic Books, 2009). The genetic analysis that revealed this dramatic acceleration in human evolution also exposed the rise of another gene variant linked with mental disorder – this time one that helps regulate dopamine, the neurotransmitter associated with pleasure and reward. Harpending and colleagues found that a particular variant of the gene that codes for the D4 dopamine receptor has increased very rapidly in frequency in humans. People with this variant, known as DRD4-7R, tend to have very high energy levels and an increased risk of attention-deficit hyperactivity disorder (ADHD). Yet the prevalence of the variant among certain groups – it is found in 80 per cent of lowland Amazonian Indians, for example – indicates that extra energy has its advantages. “Previously these traits have been highly regarded in some societies,” says Lesch.
“We see a higher percentage of ADHD-associated traits in migratory people, for example.” Like the SERT gene, DRD4-7R can be both a boon and a bane. Some researchers describe such genes as “orchid genes”: nurture them and the carrier thrives, neglect them and a maladaptive personality trait appears. If Spikins is correct, many other genes associated with developmental conditions and mental illness should possess such Jekyll-and-Hyde characteristics. Our ancestors may have benefited from this, but modern societies tend instead to view different minds as a major impediment. “Nowadays, being ‘mad’ is bad,” says Whitley. “In the west, we continue to pathologise difference, and lose its potential adaptive advantage.”
The thrust of the article is that when we were hunter-gatherers spreading out across the world, the characteristics that help be so adaptable and restless were helpful, but in the modern world a lot aren’t, and are now seen as mental illness or developmental disorders. It is an idea put forward by New Scientist before and one we can’t disagree with. Knowing quite what to do about it isn’t quite so easy.
We’ve just had a message from the group in The Wirral:
Hello every one this is Gary Sendall the founder of the Wirral support group I messed up earlier this year and lost my fone for the group witch ment we had to get a new number the new number is as follows 077548 54283 you can also contact via email if you wish to speek to a female member leeders aswell thare emails are email@example.com
The Waaddsup@hotmail.com is being used aswell
A representative of AADD UK was on BBC Radio 2 this afternoon, albeit rather briefly. It was to take part in a discussion about the Motability Scheme and whether or not people with ADHD get free cars and was set off by a couple of particularly disingenuous articles in the Daily Mail, one of which is referred to in the post below.
We got the call rather late, so only made a brief appearance, but hopefully it was a significant one. If you’d like to listen iplayer has it for seven days from the date this is posted. A summary of the show is here and it is on iplayer here. Be warned, it is a really long programme (two hours) and we only appear for a few seconds about 46 minutes in, and you may find one or two of the comments on before a bit annoying.
A website (www.fullfact.org) gives a detailed analysis of the fact-bending that went on to get to the manufactured outrage the Mail’s editor was looking for so we won’t go into detail, but we’ll just make a few points.
It seems that ADHD is being used, once again, as an easy target for ‘journalists’ who don’t seem able to make the effort find any real news.
The Daily Mail is carrying a story, last updated at 12:08 am today (11th October 2011) which states that “Iain Duncan Smith has ordered a crackdown on thousands of families with youngsters diagnosed with ‘naughty child syndrome’ who get new cars paid for by the state.” Since this article targets people with ADHD and it is inflammatory, AADD-UK has written to the Right Honourable Iain Duncan Smith seeking clarification as follows:
Dear Mr Duncan Smith,
The Daily Mail, yesterday Monday 10th October 2011, reported in their article titled “Parent of a child with ADHD? Have a free car under £1.5bn taxpayer-funded scheme” that you “ordered a crackdown on thousands of families with youngsters diagnosed with ‘naughty child syndrome’ who get new cars paid for by the state” and also that you were “enraged to be told initially by [your] department that there were no precise numbers on how many people with the condition received free cars.”
The complete article can be found here: http://www.dailymail.co.uk/news/article-2046924/Parent-child-ADHD-Have-free-car-1-5bn-taxpayer-funded-scheme.html
Since we have not yet been able to find where you have publicly attacked people with ADHD and their families in the past, we are wondering if your position is being reported accurately by the Daily Mail. If you have not been accurately represented by the Daily Mail, then please let us know and we will report this article to the Press Complaints Commission.
If however, the Daily Mail’s account is accurate, we would like to remind you that since ADHD has a substantial and long-term adverse effect on a person’s ability to carry out normal day-to-day activities it is therefore a real disability and a protected characteristic under the Equality Act 2010. Targeting people with a protected characteristic could potentially place yourself and your department in breach of the Equality Act, and in the event that the Daily Mail’s account is accurate, we will be seeking advice about this.
I look forward to hearing from you and to receiving clarification.
We’ll let you know what happens!
Alright, a slightly hyperbolic headline for effect, but it interesting to read the aims of this group that has set up (and we may join in some of their campaigns…)
There’s a good article about adult ADHD in Mental Health Today. (It isn’t actually this month’s edition but we only just spotted it!) Quite a lot about The Maudsley and SLAM.
Allie Powell, and AADD UK regular on television, explaining adult ADHD. This happened some time ago, but we really thought it worth a second showing:
Hot on he heels of the UKAAN conference, which is aimed mainly at clinicians, ADDISS (www.addiss.co.uk) are having a one day conference on the 15th of October aimed at people suffering from ADHD. It is going to be at the Directory for Social Change, 24, Stephenson Way, London NW1 but they hope to re-run it round the country. £95 for patients (with a discount for members of ADDISS and an extra charge for professionals. Full details here.
There is a big conference on adult ADHD in London shortly. It is really aimed at professionals in the field so members of the public may find it heavy going, but it certainly has some top people speaking at it so we recommend it for anyone who deals with adults with ADHD in their professional life.
The UK Adult ADHD Network (UKAAN) will host the 1st International Congress for the European Network Adult ADHD. The 2-day conference on the 22nd and 23rd September 2011 will be located in Central London in a beautiful venue overlooking the River Thames which will accommodate 462 delegates in a Lecture Theatre.
Full details of the conference here.
BBC Radio 4 has just repeated Rory Bremner’s look at ADHD which has the refreshing aspect that it covers adult ADHD as well as children. You can listen to it on BBC iPlayer here:
“GPs are feeling pressurised to prescribe unlicensed medication for adolescents with Attention Deficit Hyperactivity Disorder (ADHD) because of gaps in provision, LMC leaders have warned.” Says Pulse, the Journal for GPs.
In large parts of the country there just aren’t services to handle children with ADHD becoming adults, and this leads to some very bad consequences. Full article here.
Concerta XL, which is the brand name of a slow release from of methylphenidate (sometime known as Ritalin), has finally been licensed by the Medicines and Healthcare products Regulatory Agency for use in adults. This both a big step forward, and paradoxically a tiny step forward at the same time (but at least it is a step forward).
Until now, officially no drug has been specifically licensed for adults. It is only licensed for use in adults who were diagnosed with, and treated successfully for, ADHD between the ages of 12 and 18. Thus it is of no help to the vast majority of adults with ADHD who are only just discovering what has been holding them back all their lives. We are very pleased, however, that no longer is there an excuse for ceasing to give a successful treatment to teenagers just because they are approaching 18 (or 16 in some cases).
The other side of this is that the whole license and prescription arrangement is rather Byzantine and in fact doctors can prescribe ADHD medications for adults anyway. After all, if you can give something safely to a child of six, an adult is probably going to be pretty safe. Indeed, the NICE guidelines on the topic says doctors should prescribe the meds when necessary. So the new rules on Concerta don’t actually make much difference. The do mean that change is slowly taking place and very slowly – agonisingly slowly – adult ADHD is being recognised by officialdom.
The Drug and Therapeutics Bulletin, an independent review of medical treatment published by the British Medical Journal, has an editorial article about how enormous numbers of adults with ADHD are overlooked by the UK medical system. They provide on the web a free extract of the opening of the article, but the last two paragraphs are of far more interest to anyone affected by ADHD, so we hope the DTB/BMJ doesn’t mind if we quote those. (It’ll get more people to buy the full copy guys!)
While the evidence for treatment of adults with ADHD is sparse,
NICE concluded that the drug methylphenidate (unlicensed in
the UK for use in adults) is the first-line therapy for those with
moderate to severe impairment.(2) Drug therapy needs to be part of a c0mprehensive treatment programme addressing psychological, behavioural and educational needs, delivered by practitioners trained in managing patients with ADHD.(2)
So, it is clear that there needs not only to be a seamless transition
from CAMHS to adult psychiatric services, but that there is access
to appropriate adult psychiatric services for the assessment
and management of ADHD identified in adulthood. ln reality,
services for adult ADHD are extremely patchy, few areas have
properly commissioned services, and treatment is usually offered
piecemeal by individual clinicians with an interest in the disorder.
This situation is a clear example of national guidance not being
translated into routine practice. In defining the quality indicators
for the new NHS Outcomes Framework, the NHS Commissioning
Board must include provisions for adult ADHD within the new
Note the lines: “This situation is a clear example of national guidance not being
translated into routine practice.” and “it is clear that there needs…to be… access
to appropriate adult psychiatric services for the assessment and management of ADHD identified in adulthood“.
We’ve been saying it for years and it comes as a huge relief to be backed up by a publication with the authority of the BMJ.
Politicians, civil servants and anyone in a position of power in the health service take note: “NHS Commissioning Board must include provisions for adult ADHD within the new commissioning arrangements“.
If you have ADHD and are being ignored or fobbed off, arm yourself with the NICE guidelines (see our Know Your Rights page here). By the way SIGN, the Scottish equivalent of NICE, hasn’t yet bothered to mention include adults in its guidelines, but the Equality Act 2010 applies in Scotland and so does the NHS constitution and of course the laws of medical science are the same everywhere so we really need some activists in Scotland to put pressure on SIGN.
Thanks to the lovely people at Brighton Adult ADHD for alerting us to this article.
We often hear stories about people being told they can’t possibly have ADHD for an assortment of reasons that quite simply indicate the person making the diagnosis is ignorant or prejudiced.
First of all we must add the proviso that we understand that mistakes can be made and there are some people diagnosed with ADHD that may not have it, but our examples here are people who we have actually met in person.
Ms E. was told she didn’t have ADHD by a clinic that had, only a few months before refused to see her because they didn’t have anybody there that was qualified to treat it. There hadn’t been a change in staff so let us hope that someone there had done a lot of learning in a short time. The report said:
Ms E. does not have ADHD because she can focus sometimes.
Obviously whoever had done the learning had been away the day that hyperfocus had been dealt with. ADHD is slightly misnamed (but an expert would know that) as it doesn’t always come with the H – hyperactivity – and it isn’t so much a lack of focus as poor voluntary control over focus. Dopamine, prefrontal cortex yadah yadah yadah, if you are an expert you should know all this, if you don’t know this then you should pass the patient on to someone who does.
Mr B. was told he couldn’t have ADHD because there had been an article in The Times suggesting there was no such thing. This was by a qualified medical doctor. It is a little below the standard of modern evidence based medicine to be getting your information from opinion pieces in newspapers.
But there is some hope. A person with ADHD who clearly can focus sometimes told us:
I managed to get 3 degrees without treatment although I had serious problems because of ADHD. Getting qualifications wasn’t one of them but there were many others. Don’t worry, it is a very different story now after treatment.
He asked to remain anonymous so we’ll call him Dr S. Yes, Doctor, he’s a fully qualified medical doctor and not only that, a psychiatrist and he’s out there using the knowledge he has to help others. And there are a lot of people who do know about ADHD. So come one, let’s stick together and seriously, we can make a change.
I’m an adult who has recently been diagnosed with ADHD. I am also a graduate student at the University of Utah (USA) who is studying ADD/ADHD populations to help people, like me, who are struggling with the disorder. Currently, I am conducting a research survey that needs a large number of ADD/ADHD participants (ESPECIALLY MEN). If you could… take ten minutes and fill out the survey I would be grateful. Note: The survey is confidential, anonymous and for educational purposes only. No identifying information will be collected and your answers will not be shared with anyone outside of university faculty involved in the research. You may withdraw at any time.