AADD-UK

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.

http://www.bbc.co.uk/programmes/b01dtvls#related-links

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 Dillingham

Catriona.Dillingham@nhslothian.scot.nhs.uk

Senior Occupational Therapist

North West Primary Care Liaison Team

Base : Craigroyston Health Clinic

1B Pennywell Road

Edinburgh

EH4 4PH

Tel: 0131 315 2026

Fax: 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

AADD-UK has received permission from Mike Birtwistle, Head of MHP Health, to reproduce his analysis as to how the Health and Social Care Bill is now set to become an Act, barring any last-minute dramatic revelations. We asked for Mike’s permission because his analysis helps us to understand how these reforms might impact our access to assessments, diagnosis, and treatment for ADHD, and also helps us to figure out how we can address impacts resulting from these reforms.

Close to an Act: how did the Health and Social Care Bill get passed?

Submitted by Mike Birtwistle on 20-03-2012

It’s all over, bar some (more) shouting. The Health and Social Care Bill is nearly law but, after hundreds of hours of debate, thousands of amendments and countless controversies, what will it actually mean? And how on earth did it ever get passed?

Theoretically the Queen could decline to give Royal Assent to the Bill, as Unite suggested last week. However, barring any constitutional outrages or last minute shocks in the Commons, it will become an Act. And the Health and Social Care Act will represent one of the longest and most complex items of health legislation ever known. That it passed through a hung Parliament, in the teeth of such controversy is no small feat.

For better or worse, the Act will represent one of the most profound pieces of reforming legislation ever (alongside the Attlee reforms of the 1940s and some of the market reforms of the last Conservative Government). I believe all three sets of reforms have problems, but the scope of their impact and ambition is undeniable.

Reworking the NHS

As you flick through the new Act, chapter after chapter introduces whole new approaches to how the NHS works. Short of the original NHS Act, there is no other piece of legislation I can recall which changes so comprehensively how the NHS works:

• Section 1 of the original NHS Act has been changed. The Secretary of State no longer has a duty to provide – that means he no longer has any legal mechanism through which he can exercise his own will directly on the NHS. That is a change which has historically been necessary to enshrine the purchaser-provider split from 1990 – the failure of legislation to do so then meant that the divide has been permanently muddied for 25 years

• Section 8 of the Health and Social Care Act establishes an independent NHS Commissioning Board. It goes further than even the creation of the NHS Executive did to shift control away from ministers – again, by legislation which guarantees the Commissioning Board’s independence

• Section 9 establishes Clinical Commissioning Groups as independent statutory bodies in their own right – with functions conferred directly on them. Unlike Primary Care Trusts and Strategic Health Authorities these functions cannot simply be taken away

• Section 71 – and I write this advisedly – imposes competition law on the NHS

• Section 127 sets out the legal framework for putting an NHS hospital into administration

• Section 162 removes borrowing restrictions on NHS Foundation Trusts

• Section 164 lifts the private patient income cap

And there are others as well:

• Section 17 strips out most public health responsibilities from the NHS, and gives them instead to local councils

• Section 34 gives powers to determine whether to fluoridate water supplies to local councils (Andy Burnham should be happy about this, having campaigned long and hard for it as a new MP)

• Section 55 abolishes the Health Protection Agency

• Section 116 removes ministers from having any role in setting the tariff from NHS services

• Section 147 prevents ministers from encouraging an increase (or decrease) in the proportion of services provided by any particular sector, be it NHS, voluntary or independent

• Section 189 permits local councils to scrutinise the providers of all NHS-funded services – including in the private sector

• Section 231 establishes NICE as an independent body

Has the legislation received enough scrutiny?

Each one of these provisions could easily have seen fierce debate. Notwithstanding the row over whether or not these reforms were ‘top down’ (they were), in truth only sections 1, 71 and 164 – the purchaser-provider split, competition law and the private income cap – have represented the flashpoints.

I find this quite extraordinary.

• Take clinical commissioning. In the 1990s, GP fundholding – the forerunner of clinical commissioning groups – was so abhorred by some parts of the NHS that fundholders were labelled ‘quislings’. But something similar in legislation has now been put in place. There has been no repeat of the denunciation of those GPs who have signed up to clinical commissioning groups – they all have – which is no mean achievement.

• A hospital administration regime was considered by the last Labour Government but baulked at, for fear of the political consequences. In this legislation, it has been set out with no particular scrutiny amongst the public (even if Lord Warner has done an admirable job in the Lords).

• And the prudential borrowing code was – alongside the private income cap – the major concession awarded to Labour rebels over foundation hospitals in 2003. Now it has just been removed without public debate or much parliamentary scrutiny.

And those are just the parts of the Bill which have – relatively speaking – attracted attention.

Passing public health powers to local councils represents one of the greatest reshaping of responsibilities this country has ever seen. And it seems to have just happened. Policies on the fluoridation of water were one of the major parliamentary flashpoints of the passage of the Water Act 2006 (the Conservatives even gave their own side a free vote on the issue). Now it has just been whipped through.

The Health Protection Agency was painfully constructed in its own right as an independent organisation through a piece of well-considered legislation – the Health Protection Agency Act – and it has simply been taken back by ministers, without Parliament having brought to bear any particular level of scrutiny.

The Health and Social Care Act has ripped through vast swathes of primary legislation. It is as broad in scope as any piece of consolidating legislation – but it doesn’t consolidate anything. All of it is new.

And this is the premise of my blog today. I do not believe that the Health and Social Care Act has attracted too much noise. If it had been broken down into its component parts – some 10 bits of separate primary legislation, say – there is no chance it would have all got through. In my view, parts of it have attracted too little (or at least too little high quality) scrutiny.

Fortunate circumstances

So how did it happen that we (nearly) have the Health and Social Care Act? I am struck, not by the headwind that has faced Andrew Lansley – and we should be in no doubt that these are his reforms, rather than the Government’s – but by the extraordinary beneficence of circumstance which has greeted him.

First, the Bill would not have made it to the verge of an Act had it not been for the Coalition. It was the Coalition which has given the Government a stable majority in the Commons, and enough voting feet in the Lords to go through the lobbies. The Liberal Democrats may hate it, but this Act will reach the statute book because of them. A wafer-thin Conservative majority – given the number of Conservative MPs who are either downright hostile to Number 10, openly sceptical about the benefits the reforms would bring, or even privately contemptuous of the role of a taxpayer-funded NHS – would have evaporated as the Bill reached its endgame. With a Conservative-only Government, the Act may never have made it.

Second, this would not have passed were it not for the introduction of fixed-term Parliaments. It was this policy which has gifted Andrew Lansley the extraordinarily long session of this Parliament – a session two years in length. Without that, the Bill would have had to have been introduced in the Lords and carried over in the Commons. The Opposition could so easily have strangled it then, particularly after the pause and further delays to reconsider the duties of the Secretary of State.

Third, the reforms would never even have seen the light of day were the Government not so green when they were first published. Any new item of controversial reform is now pored over by the Government. But, back in the heady days of July 2010, it was just nodded through. By someone in Number 10’s own admission, Downing Street was asleep at the wheel. By the time they realised the political risks they could be running, they were already running them.

Fourth, the permanent civil service – not necessarily within the Department of Health but certainly in the Treasury and in Number 10 – hate the reforms. But when the Government came to power they were too timid – too fearful of their new political masters – to challenge the basis of the reforms. The permanent civil service, particularly inside Number 10, is now much stronger. A reform of this sort could no longer get through without it meeting fierce resistance. But, by the time Downing Street had strengthened itself, it was too late to stop the juggernaut.

Fifth, many of the key moments in the reform process had nothing to do with Parliament. The formation of pathfinder consortia (now commissioning groups) and the agreement, back in the autumn of 2011, which made membership of a clinical commissioning group a condition of the GP contract, had little to do with the Act, but made many of the changes it introduced inevitable. GPs effectively and irrevocably signed up to the reforms long before many of them decided to oppose them.

The role of Andrew Lansley

These five reasons help to explain how the Bill has been (nearly) turned into an Act. But I am not a believer in happy coincidence. And although he is described in many ways now – ‘hapless’, ‘beleaguered’ etc – I do believe there is method to Andrew Lansley’s madness.

Andrew Lansley is a professional policy maker. But more than that, he is a professional legislator, and he is a professional civil servant by training – his early career involved making things, controversial things – happen under the Thatcher Government. He is all of these things first, rather than a politician, which explains the difficulties he has experienced in communicating the reforms, but perhaps also explains his ultimate success in making them happen.

He has also, surprisingly given his low profile before the General Election, been around forever. He was working in the Government when the Conservatives swept to power in 1979. He was in the Cabinet Office in the late 1980s, when Mrs Thatcher was in her prime. He was also the head of policy for the Conservative Party when she was deposed. Amongst the Cabinet, he is second only to Ken Clarke in terms of government experience.

And he has used his expertise and his experience to great effect. For many of the apparently fortuitous coincidences listed above, there are reasons why they have been brought about – in one way or another – directly by Andrew Lansley:

• Liberal Democrat votes. The most critical thing to getting plans off the ground is to ensure you have a majority in the Commons. In retrofitting local democratic accountability onto his original plans – something which he hated before the General Election – he was able to get Coalition support for his proposals. So, yes the Liberal Democrats delivered votes but only, initially, because Andrew Lansley made a tactical retreat (something he is not particularly famed for), implementing a policy he once fiercely opposed.

• Using the honeymoon period. The sheer speed of delivering a White Paper just three months after a General Election was something driven by Andrew Lansley himself. He used his experience of the civil service to channel resources into the development of the White Paper, used his experience of the Whitehall machine to circumnavigate all the relevant Cabinet committees, and his experience of legislation to make sure everything he wanted to achieve was in the first draft. That speed was, as we have seen, critical not only to lulling the Government into a false sense of security – but also to ensuring the Government as a whole was in too deep before Number 10 was capable of (or predisposed to) resisting government departments.

• Confusing opponents. The breadth of topics the legislation covers, which gives rise to the complexity which has so disorientated opponents, is entirely intentional. Now, this confusion may have had the unfortunate side-effect of manifesting itself in the scorn for which the media feel towards Andrew Lansley’s reforms – ‘what on earth is he doing?’ – but it does mean that the reforms themselves have been able to march across the battlefield from one trench to the other under the cover deliberately dense fog. The BMA, for example, spent over a year trying to reconcile support for clinical commissioning with opposition to the competition elements of the Act. By the time this evolved into outright opposition, both sides of the Coalition were bound to the reforms and it was too late. It may not make for a good communication strategy to the public, but complexity was important in getting the reforms off the ground in the first place.

Andrew Lansley’s approach may not have translated into political advantage or public popularity, but it did, ultimately, lead to legislative achievement. The successful passage of one of the largest, most complex and contentious acts of reform – particularly in a hung Parliament – was not something which could have ever been guaranteed. There is no doubt that a healthy dose of luck has allowed its passage. But, as the saying goes, you create your own luck. And that is how the Act has been passed.

The next question is of course, will it ever get repealed? And that is something I shall return to later this week.

And now here is a link to Mike’s blog on the MHP website. Thank you Mike!

The UK Adult ADHD Network (UKAAN) will hold the 3^rd Congress on the 29^th June 2012. The theme will be ‘Transition of ADHD from Adolescence to Adulthood’. The conference will be located in Central London at Savoy Place, 2 Savoy Place, City of London WC2R 0BL

The congress aims to bring important topics on transition in ADHD to a wider audience. The scientific program will include five main sessions, with a panel and audience discussion

Clinical services for ADHD during the transition years from adolescence to adulthood and for those newly diagnosed as adults are developing rapidly. This meeting will address important clinical and scientific questions relating to ADHD and will be relevant to anyone interested in the mental health of people from the adolescent years through to early, middle and later adult life.

For more information and registration details for this important conference please go to the UKAAN website.

Brighton Adult ADHD Group has been invited to contribute directly to a new cross-government disability strategy. The Government has published a discussion document with questions and Brighton Adult ADHD Group wants to gather your views, to make sure we represent the experiences of people with ADHD in Sussex.

To share your views please come to our discussion event. We will have a speaker from the Office for Disability Issues.

Date:  Wednesday 7^th March

Time:  18.30 – 20.00

Location: The Brunswick Room, The Brighthelm Centre, North Road, Brighton, BN1 1YD

Light refreshments will be provided

For further information please contact Caroline Williams on 01403 733931

We want to talk about practical ideas that will make a real difference to your life. The Government has asked us to focus on three areas:

• realising aspirations
• increasing individual control
• changing attitudes and behaviours

We have made a questionnaire with questions relating to each area that can be downloaded here. It would be helpful if you could fill in your responses before coming to the meeting, and bring them with you. If you are unable to attend the meeting, please email your responses as soon as possible to mail@adhdbrighton.org.uk

We will send a report of our event to the Government. They will look at everyone’s suggestions and work with disabled people to publish a new strategy later this year.

If you want to find out more visit www.odi.gov.uk/fulfillingpotential

AADD-UK has not yet received an official response to our letter (see previous post on this subject) regarding the actions taken by NHS Trusts and Commissioning Groups in Cambridgeshire which restrict access to NICE recommended treatments for people who are diagnosed as adults with ADHD.  However, we notice that the new low priority policy for ADHD has been removed from the website for the Cambridgeshire and Peterborough Public Health Network and has been replaced by the words “Please note this policy has been temporarily withdrawn.” You can read this for yourself here.

Now we do realise that this removal could just be coincidence, and may or may not be a good sign.  But Cambridgeshire County Council, who also received a copy of our letter, has made a very positive move.  The Council’s “Adults Wellbeing and Health Overview and Scrutiny Committee” has listed under Agenda Item 7a (for their meeting on 8 February 2012) in ”Committee priorities and work programme 2011/12” the following: “Provision of medication for adults with ADHD: The Chairman has received representations from individuals with ADHD on this issue.  It is proposed that the Chairman and Vice-Chairman, with the support of the Scrutiny and Improvement Officer, follows this up with NHS Cambridgeshire.”

Well done and a big AADD-UK Thank You to Councillor Kevin Reynold, the Chairman of the Committee!

The meeting of the Adults Wellbeing and Health Overview and Scrutiny Committee is open to the public so if you live in Cambridgeshire and have been affected by the low priority policy do please go to the meeting. The meeting is on Wednesday 8 February 2012 at 2:30 PM in the Kreis Viersen Room, Shire Hall, Cambridge.  More details are available on their website here.

And again, Thank You Councillor Reynold!

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.

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.

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 celiawaaddup@hotmail.co.uk
paulinewaaddsup@hotmail.co.uk
cherlywaaddsup@hotmail.co.uk
garywaaddsup@hotmail.co.uk
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.

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.

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!

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

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.

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.

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/

“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
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.

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.

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

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

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

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 »

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.

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…

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.

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 »

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:

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 »

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

Continue reading »

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.

As I crouch here, squeezed into… Continue reading »

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

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…

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

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 »

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?

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.

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

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…

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.

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 »

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.)

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.

*** Note: the venue has changed***

First ever Brighton meeting:

7pm Wednesday the 11th of May at The Caxton Arms, North Gardens, Brighton (not far from station)

Click here for a map.

Any questions, contact the organiser here.

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…

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

22nd – 23rd September 2011

Location: Central London

There’s a regular meeting for adults with ADHD at the MIND Wellbeing Centre, 3 Woburn Road, Bedford MK40 1EG. It is from 4:30 to 6:30 pm every two weeks, the next meeting is on the Thursday the 14th of April. Contact Neill: 

There are groups around the place that have started recently – we don’t necessarily have a full meeting schedule for them but get in touch directly if they’re in your area…

The next Edinburgh meeting will be at Espresso Mondo 116 Lothian Road, Edinburgh, contact the local group for date and time and the next Glasgow one Costa Coffee, 205 Sauchiehall Street, again contact the local group for date and time but usually the second Saturday in the month

And there one in Southampton on the morning of the 7th of April more details here.

Manchester:

Held on the second Monday of every month (unless otherwise notified).

The purpose of the group is to allow anyone with an interest, from those with ADHD to relatives and professionals, to share their experience in an informal setting for the benefit of all.

In future meetings we might have a guest give a short presentation on any subject of interest to the ADHD community – this will be followed by our usual free for all discussion.

We understand that you may be a bit shy and not want to come on your own. We are very welcoming and inclusive so you won’t be left on your own in a corner.

Doors open around 6:30PM for a 7:00PM start and finishing at 9:00PM.

For more information contact Dave on 07976 208840 or adhdfriendly@live.co.uk

Or click here for Dave’s web page.

Meetings coming up:

The central London Adult ADHD support group is on Tuesday the 5th of April in Costa Coffee Argyll Street (round the corner from Oxford Circus, not too far from the London Palladium). 7 pm to 9 pm. More details here:

Central London ADHD adults’ meeting

The Bristol & South Wales meeting is on Thursday the 14 of April 7 – 9 pm. More details here (if it says ‘March’ come back a bit later when it is updated!):

Bristol & South Wales ADHD adult’s meeting

The Harrow (north-west London) meeting is as per usual 8 – 10 pm on Monday the 11th of April. More details here:

Harrow ADHD adults’ meeting

There is also a new group in Bedford, details to follow. Hopefully, as we get used to this WordPress we’ll be able to give all of these groups their own separate pages and people can update as they go along.

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