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“Concerta” Now Licensed for (some) Adults

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.

“Adults with ADHD: ignored and undertreated” says British Medical Journal publication

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
commissioning arrangements.

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.

Misunderstanding and misdiagnosis

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.

Correspondance received…

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.

https://edu.surveygizmo.com/s3/560667/ADHD-and-SA

ADHD and Hitched?

Just a quick post for those with spouses/partners – good article here:

http://www.adhdmarriage.com/content/adhd-and-marriage-you-are-so-different

Guinea Pigs Wanted

We recently got sent the message below. We don’t know the people that sent it although at first glance the thing seems fine. Perhaps someone out there could volunteer and let us know. If it is likely to help people with ADHD then lots of us should volunteer. There is also money in it (click the link for full article) Continue reading →

This is YOU…

Admit it. The person they are talking about in this video is you:

It’s from www.totallyadd.com – great web site, by the way.

Meetings…

Central London meeting Tuesday 7th June

Brighton meeting tomorrow Wednesday 8th June

Bristol Adult ADHD meeting Thursday 9 June

Bedford Adult ADHD support Group meeting Thursday 9th June

Manchester meeting Monday 13 June

Harrow (NW London) meeting Monday 13th June

And there are more – sorry we’re really pushed for time but if you run an adult ADHD support group, or know of one, and it isn’t in the above list, please type it in the comments box below (you may have to click the headline saying “Meetings…” above to actually get the comments box to appear. Sorry, it’s a web thing, we don’t understand either…

ADHD Top Tip #2 Text message reminders

You probably have a diary, or several, but do you remember to look at it? You may not even take your diary around with you for fear of losing it. But, you are probably pretty good at keeping your phone with you…

Google Calendar and Yahoo Calendar both have the very useful (and free!) feature that you can set them to automatically send you a text message a certain length of time before an appointment. You need to tell it the your phone number of course, and set up a default warning time which people often set to an hour or you can change it to whatever you want. You can also set up e-mail reminders.

The e-mail reminders are great for remembering something a day or weeks in advance, especially as you can set up more than one for each event so it acts as a sort of countdown e.g. “Wedding Anniversary on the 30th BUY PRESENT/BOOK RESTAURANT!”. Arrange the calendar to e-mail you perhaps two weeks in advance, then one week and the day before and click the box for ‘repeat’ and for the rest of time you’ll get a timely reminder to prepare for the event.

Set the texts to come in nearer the time. Again, you can set more than one. If you are bad at timekeeping the text message sound will jog your memory. You can even use them as a to do list. If you have a stack of things that you need to do on any given day, put them in the calendar one after the other as if they were appointments. Space them out a reasonable time apart. Then, when you’ve finished the first thing on your To Do list and wander off to have a cup of tea, start thinking about something else, turn on the telly, lose the list, forget why you went into the room in the first place, phone a mate (you know all the things that stop you getting anything done) a few minutes later the next text will come in, jog your memory and tell you what to do next.

Of course, this does all require you to actually put stuff in the calendar in the first place. Some people with ADHD swear by it though, especially as some phones sync up to the on line diaries so you can put in appointments anywhere. Have a go. Tell us your experiences, or if you’ve found something along the same lines.

A Trap for the Uwary

Everyone puts their foot in it now and again, and people with ADHD do it more than most. There’s the impulsivity that some people have and there’s the being distracted by all sorts of things and just not thinking hard enough about that you are about to say.

BUT THERE ARE SOME REAL TRAPS OUR THERE! Continue reading →

The Horror of Winterbourne View

Whilst we haven’t always been fans of the BBC’s Panorama programme in the past (in fact one of our members successfully put in a formal complaint) we would like to applaud it for exposing the shocking treatment at Winterbourne View of people who were supposedly there to get help. We are pleased that the Bristol Police are investigating. We are also pleased that the Government has announced that in future inspectors will make unannounced visits. It seems very odd though, that this is only being done in response to the recent expose and that no government has previously thought of unannounced visits.

Surely it is well known that people make an effort and sweep all sorts of things under the carpet if they know they are going to be inspected? Where else are inspections not actually inspecting the reality of the situation? It is very concerning to think that such horrors might be widespread. Here is the BBC news report:

http://www.bbc.co.uk/news/uk-13617196

And here is a clip of the programme on YouTube:

http://youtu.be/yLUKYtkRbMA

ADHD Top Tip: House Keys

Ever locked yourself out of the house? What did you do? Pay a locksmith? Drill off the lock? Break a window or crowbar the door? Not something you want to do regularly, yet it is a nightmare some people face again and again. One somewhat unsatisfactory solution is to put a key under the doormat, but apparently some burglars have actually heard of this. Here’s a solution one member came up with a long time ago and hasn’t been locked out since…  Continue reading →

Meetings: The Wirral & Liverpool

There is a regular meeting for adults with ADHD in the Wirral

Continue reading →

“ADHD and Me” Rory Bremner’s programme

We were delighted to hear the BBC Radio 4 documentary by Rory Bremner about his experience with ADHD and examine how it affects both children and adults in general. It was very sympathetic, stuck to the established facts, mentioned adults as well as children and covered a lot of aspects (it didn’t mention the purely inattentive type, but overall the whole thing was so good we’re not complaining.)

It wasn’t that someone famous has ‘come out’, although that’s great, but that the programme actually covered the matter so well. We didn’t even know it was being made, but it may be quite a landmark in getting recognition of the difficulties in life people with ADHD have. We may have a new champion for our cause! We’d like as many people as possible to hear it, so please let anyone you can think of know.

More details about the programme here or listen to it on BBC iplayer and there’s a news article here.

Strewth! Rory Bremner and ADHD

As I crouch here, squeezed into… Continue reading →

Anger Management

The adult ADHD group in Harrow (NW London) has received a generous offer low-to-no cost anger management workshops specifically aimed at adults with ADHD. Details aren’t fixed yet – they need to see if there is enough interest, so if you are or know someone who has ADHD and would like help with anger management, and you’re in the area let them know:

ADHD Support Harrow, 35 Pinner Green, HA5 2AF
Tel: 020 8426 1719
E-mail: adhdharrow@btconnect.com

Bristol Adult ADHD Support Group Meeting (and Bedford)

The Bristol Adult ADHD Support Group will be meeting this Thursday, 12th May 2011 from 7 to 9 pm at The Pierian Centre, 27 Portland Square, Bristol.  For more information see our page here.

And there’s a meeting in Bedford, too. It’s at 4:30 at  the usual place – see post (much) further down for dtails…

Reminder (only just in time!)

Meetings tonight: Manchester and Harrow (north west London). And don’t forget Brighton this Wednesday.

New Scientist article on Evolution and ADHD

This week’s New Scientist magazine has an interesting article on human evolution and the spread of humans across the planet. It seems it might be to do with ADHD genes! Note: this isn’t the whole article, the ADHD bit was only mentioned at the end so we’ve cut out quite a bit for our ADHD readers (and editors). The full article on the NS web site is here. If you have trouble getting the full version let us know and we’ll see what we can do. Now read on…

Out-of-Africa migration selected novelty-seeking genes

AS HUMANS migrated out of Africa around 50,000 years ago and Continue reading →

Don’t like that picture at the top…

I can’t imagine who put that picture there at the top of the page. Rubbish. Needs something much better.

Suppose it’s meant to be symbolic or something. Long hard road. Dust, dirt and grime. Getting lost. Rubbish. Can anyone come up with a better one?

Asperger’s & ADHD

Some people are of the opinion that ADHD is specifically part of the Autism/Asperger’s spectrum but in fact there are a lot of people with ADHD that don’t have Asperger’s and some are  much less Asperger’s than the general population. It isn’t unusual for the two to go together, though. Having trouble switching tasks is something common to both.

But rather than drone on about the technicalities, we thought we’d do something more fun. Here’s a link to a quiz so you can test yourself for Asperger’s.

Help a student

Anyone wanting to help a student looking into ADHD and how it is dealt with might like to do the survey below:

I am currently at The University of York and working on my dissertation ‘how society deals with adult ADHD’
As i was diagnosed only last year after a long fight, i was hoping others could share some information with me by doing my survey.

The link is below:

http://www.surveymonkey.com/s/G6F6TN6

Thank you so much.

Sophie

Interesting video about ADHD from the Wellcome Trust

This came out a little while ago but we don’t seem to have taken the link with us to our new site, and it is well worth a look…

Bristol, London, Manchester meetings

Central London meeting Tuesday 3rd of April, same time, same place…

Manchester meeting 9th May, more details here :

Bristol Meeting should be Thursday the 12th of May (the second Thursday of the month) from 7 to 9pm at the Pieran Centre, map here.

It’s the ones without ADHD that are barking mad!

Honestly! Some of the advice we get for dealing with ADHD comes from Professors of The Bleedin’ Obvious at Bloodyuseless College, Oxford!

‘Top’ ADHD coach that shall remain nameless (unless enough of you ask!) has just issued a list of top tips for overcoming ADHD. The first one made me want to gnaw my own leg off:

Keep the goal in mind.

One of the hardest struggles for my clients is keeping their goals in mind. If you can’t see your goals, you’ll be more likely to get off track. Devise methods to keep the goal in mind, and to see, and track, progress. Mark your goals with colored markers on a monthly calendar and post it where you will see it throughout the day, in the kitchen, perhaps, or over your workstation or desk.

Keep the goal in mind. Thanks! I hadn’t thought of that! Well done! If you give advice for overcoming depression do you say ‘cheer up, misery guts!’? Do you deal with schizophrenics by saying ‘Don’t be such a loony!’? Of course it is one of the hardest struggles for your clients, because that’s the essence of the problem in the first place.

“Devise methods to keep the goal in mind”. Brilliant advice! That what they’re paying you for! How successful would a tennis coach be if she gave the advice “Devise methods for scoring more points than your opponent.”? Answer: not very.

And then the ultimate: a monthly calendar. Well that’s new, I must say. No one with ADHD ever, ever thought of using a calendar. No, it is our appalling lack of knowledge of commonly used pieces of stationary that has been holding us all back all these years. Thank you so very much. Now I realise what all those funny bits of paper with the name of a month at the top and lines dividing the paper into boxes, with numbers are. Blimey, I’ve just got it. The numbers are consecutive, aren’t they? They’re days of the month! Hurrah! I’m cured! Continue reading →

This website is interactive, you know…

You can write in a comment on almost any page on this site. So please let us know what you think, or if you have a useful piece of information to impart to other people with ADHD, type it into the comments box.

Also, some articles are too long to fit on the front page without squeezing off the rest so only the first bit is shown. If you click the title you’ll get the whole article. (But not this one – far too short.)

Interesting Programme on BBC Radio 4

BBC Radio 4’s psychology programme “All In The Mind” is looking at a new study that may lead to much earlier diagnosis (as young as six months old, perhaps) of developmental disorders. Details on the BBC site here or play the programme now here.

It is a very good series but we’ll be listening in with something else in mind – they don’t seem to have ever mentioned ADHD, adult or otherwise. It will be interesting to see if they mention it tonight. Anyway, apart from that it is generally a very informative programme. The bit about some forms of anorexia perhaps being a form of autism sounds fascinating too.

Are you a boss with a member of staff with ADHD?

Here’s an article from US website ‘Small Business Review’ about handling staff with ADHD. It was written by someone with ADHD so is quite interesting for employees too. (But the links are to US organisations so not a great help to those outside.)

The full article is here: http://smallbusinessreview.com/for_the_boss/Managing_the_ADHD_Adult/

Excerpt here:

Managing the ADHD Adult

By Nancy Snell

There are millions of ADHD adults in the workforce. Learn to make the most of their talents.

As a business owner or manager, the odds are that at some point you will have to deal with an employee or colleague who has ADHD (Attention Deficit Hyperactivity Disorder), commonly known as Attention Deficit Disorde. The presence of ADHD among children is well known. But it is also common in adults . Experts estimate that between 8 million and 10 million adults suffer from ADHD and two-thirds of children with ADHD will continue to have ADHD as adults.

When ADHD shows up in the workplace (usually it’s undiagnosed), there are potentially severe consequences—lost productivity, disruptions, mistakes. Without proper handling, the employee who suffers from ADHD or who starts to exhibit ADHD-like symptoms—distractibility, feelings of being overhwhelmed—can throw a huge monkey wrench into the workings of a small operation. On the other hand, with professional help and careful supervision, the ADHD adult can continue to function productively, and maybe even thrive. Rest of article here…

To answer a question about ‘natural’ remedies….

Some people (e.g. me) think this is just brilliant, others don’t. You have been warned.

Hello world!

We are testing out a new site for Adults with Attention Deficit (Hyperactivity) Disorder UK. It is being done on WordPress. This is where the news will go…

*** JUST IN ***

From Lizzie Coultas, Acumen Field Work:

Apologies for the short notice but we have had some cancellations on a project we are recruiting for and so have some interviewing slots to fill in London tomorrow and Friday. Below are the details of this research. If you are interested in taking part please call myself or Anthea as soon as possible so that we can go through the details of the research with you :

We currently have a project where we are keen to speak to people with low internet confidence about websites.

We are specifically looking for people with the following conditions and disabilities:

ADHD, Aspergers,  Low reading age, Mild to moderate learning difficulties.

Participants will be required to attend a pre study briefing on 31^st March or 1^st April for 45 minutes at a venue in Hammersmith.

They will then be given a 14 day diary study to complete.  This diary study will take around 1 hour per day.

Midway through the study participants will receive a 1 hour home visit.

Finally, participants will be required to attend a 1 hour meeting in Hammersmith on 18^th or 19^th April.

Participants will receive an incentive of £230 as a thank you for their time and opinions.

Is this is something you might be interested in taking part in? If so we would be delighted to hear from you.

If this is relevant to a family member, friend or work colleague, please forward on.

Please do not hesitate to contact me on 0161 234 9940 or send me an email.  Please include a contact telephone number in any response.

Many thanks,

Lizzie Coultas, Medical Field Manager, T: 0161 234 9940, DD: 0161 234 9951

www.acumenfieldwork.com

3 CANAL STREET, THE VILLAGE, MANCHESTER, M1 3HE