There is a very interesting article in yesterday’s Financial Times that points out that despite scientific evidence that ADHD symptoms persist into adulthood and despite evidence that there is a high burden of cost associated with under treatment of ADHD, some European regions are still cautious about approving medications that treat ADHD symptoms. A spokesperson from the UK’s Medicines and Healthcare products Regulatory Agency (MHRA) explained that they recognise adult ADHD as a condition, but the spokesperson also said that the reason “no product has so far been approved for adult ADHD is because submitted data were insufficient to establish a positive risk-benefit balance, not because of a lack of recognition of the indication.” The full article is available from the Financial Times here.
Given that our own Guidelines here in the UK were published 5 years ago (actually to be precise 4 years and 8 months ago), I feel that it is shameful that we are not further along than this!
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. Continue reading
The UK Adult ADHD Network (UKAAN) will hold the 3rd Congress on the 29th 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.
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:
Recommendations for people living in Cambridgeshire
For those of you who have been affected by this situation, we strongly urge you to file complaints with the Patient Advice and Liaison Service at the following:
1. NHS Cambridge: Freephone: 0800 279 2535 or 01223 725 588 or by email firstname.lastname@example.org or write to them at Patient Advice and Liaison Service, Lockton House, Clarendon Road, Cambridge CB2 8FH
2. NHS Peterborough: Tel: 01733 776283 or by email PALSTeam@peterboroughpct.nhs.uk, or in writing to PALS, City Care Centre, Thorpe Road, Peterborough PE3 6DB.
Also, if any of you would like to help the local ADHD support group fight this, please contact Rebecca Champ. You will find her email address and phone number on her website: ADDventure Within.
The Daily Mail is carrying a story, last updated at 12:08 am today (11th October 2011) which states that “Iain Duncan Smith has ordered a crackdown on thousands of families with youngsters diagnosed with ‘naughty child syndrome’ who get new cars paid for by the state.” Since this article targets people with ADHD and it is inflammatory, AADD-UK has written to the Right Honourable Iain Duncan Smith seeking clarification as follows:
Dear Mr Duncan Smith,
The Daily Mail, yesterday Monday 10th October 2011, reported in their article titled “Parent of a child with ADHD? Have a free car under £1.5bn taxpayer-funded scheme” that you “ordered a crackdown on thousands of families with youngsters diagnosed with ‘naughty child syndrome’ who get new cars paid for by the state” and also that you were “enraged to be told initially by [your] department that there were no precise numbers on how many people with the condition received free cars.”
The complete article can be found here: http://www.dailymail.co.uk/news/article-2046924/Parent-child-ADHD-Have-free-car-1-5bn-taxpayer-funded-scheme.html
Since we have not yet been able to find where you have publicly attacked people with ADHD and their families in the past, we are wondering if your position is being reported accurately by the Daily Mail. If you have not been accurately represented by the Daily Mail, then please let us know and we will report this article to the Press Complaints Commission.
If however, the Daily Mail’s account is accurate, we would like to remind you that since ADHD has a substantial and long-term adverse effect on a person’s ability to carry out normal day-to-day activities it is therefore a real disability and a protected characteristic under the Equality Act 2010. Targeting people with a protected characteristic could potentially place yourself and your department in breach of the Equality Act, and in the event that the Daily Mail’s account is accurate, we will be seeking advice about this.
I look forward to hearing from you and to receiving clarification.
We’ll let you know what happens!
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…
22nd – 23rd September 2011
Location: Central London
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.
The conference will bring together internationally recognised experts in the diagnosis and treatment of ADHD across the lifespan and highlight basic science and clinical research that contributes to our current understanding of ADHD as a lifespan disorder. Clinical services for ADHD during the transition years from adolescence to adulthood and for those newly diagnosed as adults are developing rapidly throughout many parts of Europe. The conference will build on this growing expertise by providing a uniquely European perspective that highlights the full range of functional, cognitive and mental health impairments, the impact that ADHD has on adolescent and adult mental health and the contribution to adult psychopathology. 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.
More information including the programme, speakers, and registration details are available here