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AADD-UK’s response to Cambridgeshire’s denial of NHS treatment for adults newly diagnosed with ADHD

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:

1. AADD-UK letter to NHS Midlands and East

2. Briefing Paper for proposal for a low priority policy

3. Low Priority Policy

4. Patient Information Leaflet

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 c-pct.pals@nhs.net 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.

Psychology Today recognises adult ADHD

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.

Read the article here.

Funny, painfully true, but funny…

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 in New Scientist again

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.

News from The Wirral

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 celiawaaddup@hotmail.co.uk
paulinewaaddsup@hotmail.co.uk
cherlywaaddsup@hotmail.co.uk
garywaaddsup@hotmail.co.uk
The Waaddsup@hotmail.com is being used aswell

“Free” cars, the Daily Mail, Radio 2.

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.

1. The department that gave out the figures were not able to separate children that have ADHD only, and nothing else from children that have ADHD along with something else, a ‘co-morbidity’ as it is called. The article only referred to parents of children with ADHD, as usual forgetting that adults can have it too. ADHD often occurs on its own, but just as often occurs with other problems too. The children so cruelly criticised in the newspaper have other problems such as severe epilepsy, autism and cerebral palsy along with ADHD. Yet the Daily Mail reports it an outrage that these children’s parents get help with transporting them to school and the other activities of childhood because they also have ADHD.
2. The total number of people who get Disability Living Allowance was reported as if that is the number of people who get “free cars” when actually there are several levels of Disability Living Allowance and only at the top level can get a car. Children with only ADHD don’t get the top level.
3. The whole “free BMW” thing is utter nonsense. The cars have to be leased out of the Allowance. You can get a BMW if you like, but you don’t get any extra money. You have to pay the difference yourself.
4. If you read the FullFact.org article you’ll see that actually the maximum number of people who get a subsidy to buy are a car is, at the absolute maximum, not even 100.
5. Even then, picking up point 1, the children that get the Allowance don’t just have ADHD but are have other debilitating problems so the likelihood is that no one at all gets the full Allowance for ADHD i.e no cars are subsidised because of ADHD.
   
6. Okay, we know people with ADHD can be impulsive, it is one of the symptoms, but please try really hard not to rush out and ask for a free BMW!

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.

Parent of a child with ADHD? Have a free car under £1.5bn taxpayer-funded scheme

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. 

Kind regards,

We’ll let you know what happens!

Mental Health Gets Militant

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…)

http://www.standtoreason.org.uk

Adult ADHD in Mental Health Today

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.

Worth a Second Look…

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:

ADDISS Conference

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.

1st International Congress for the European Network Adult ADHD

1st International Congress for the European Network Adult ADHD

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.

Rory Bremner ADHD and Me – it’s back.

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:

http://www.bbc.co.uk/i/b011c0nn/

Another huge gap in ADHD provision…

“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” 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:

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