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Acharnians

Acharnians has written 32 posts for AADD-UK

PROUD: Pilot study on prevention of low mood & weight problems in young adults with ADHD

Researchers for the study of Comorbid Conditions in ADHD (CoCA) at King’s College London are looking for adolescents and young adults aged between 14 to 30 years, who have a current diagnosis of ADHD and are on stable treatment for ADHD (i.e. medical or non-medical, or no active treatment at all), to take part in a new research study investigating the use of exercise and bright light therapy to improve low mood, weight problems and general health. Participation involves one of the following 10-week interventions as well as five visits to their research centre in south London for a number of physical and mental health assessments.

(1) Exercise programme – to evaluate the effects of exercise
(2) Bright light therapy – to evaluate the effects of bright light
(3) Treatment as usual – to provide a control group with no additional interventions.

Participant requirements:
1. Diagnosis of ADHD
2. Stable treatment as usual
3.Age 14-30 years old
4. No diagnosis of autism spectrum disorder, bipolar disorder, or any other severe psychiatric disorder requiring inpatient treatment
5. No severe medical or neurological condition not allowing bright light therapy or physical exercise
6. No history of epilepsy

Travel arrangements:
They will help make the travel arrangements as convenient as possible and will reimburse all of your travel expenses. They will also provide a reimbursement of £200 for your time and effort, which will be paid in instalments for each of the five appointments attended.

Background Information:

This particular project is one part of a large international & collaborative ADHD research project (launched in April 2016) called “Comorbid Conditions of Attention deficit/hyperactivity disorder (CoCA)”. The aim of CoCA is to understand how and why ADHD often occurs alongside other physical and mental health problems, including anxiety, depression, substance use disorders and obesity. King’s College London’s Institute of Psychiatry, Psychology & Neuroscience (IoPPN) is one of 17 institutions across nine countries to receive funding for this project.

Through CoCA, the researchers hope to raise awareness of ADHD, reduce the stigma associated with ADHD, and empower prevention and therapy approaches as well as providing new tools to prevent ADHD from escalating into additional disorders.

How to get involved:

For further information as well as contact details please click on the following links:

1. PROUD information & consent form

2. PROUD recruitment

3. PROUD Letters of invitation – adults version

4. PROUD recruitment poster

5. News release (12/04/2016): Researchers launch international ADHD project

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Clinical Guideline (CG72) ADHD: diagnosis & management Update

NICE Guidelines are recommendations for the treatment and care of people with ADHD by health professionals within the NHS. They are based on the best available research evidence and their aim is to improve the quality of healthcare. The guidelines are also used to develop standards to assess the clinical practice of ADHD clinics and services and are used in the education and training of health professionals. They also help us, people with ADHD, to make informed decisions and improve communication between us and the health professionals. When a guideline is developed, organisations can register as stakeholders (AADD-UK is a registered stakeholder) which means that they are consulted throughout the development process.

The original guidelines (on the diagnosis and management of ADHD) were published in September 2008 and are now being updated. The update covers the areas of identification of risk factors, post diagnostic advice, non-pharmacological and pharmacological management and intervention adherence for children, young people and adults with a diagnosis of ADHD. It does not cover any other aspect from the previous guideline.

The consultation period started on the 6th September 2017 and will end on 18th October 2017 at 5 pm. The updated guidelines are expected to be published on 21st February 2018.

NICE accepts comments during the consultation period from organisations that are registered as stakeholders but individuals can submit comments by contacting the stakeholder organisation that most closely represents their interests. AADD-UK is a stakeholder organisation and will be submitting comments so if you would like to add your suggestions or comments please feel free to send them to us by email at aadd.org@gmail.com. Here is a link to the NICE website with more information about the ADHD Guideline update.

ADHD: Surviving or Thriving?

Here at AADD-UK we avidly followed the news about mental health issues during Mental Health Awareness Week.  We admired the bravery of those telling their own stories, we retweeted some general mental health links instead of those that only dealt directly with ADHD, all the while preparing for our 10th Year Anniversary by revamping our website. Then suddenly we realised we’d forgotten the elephant in our own parlour! So we decided to write, just before the week ended, our own position for Mental Health Awareness Week.. Here it is:

First, we thanked the Mental Health Foundation for hosting the week, and thanked them for commissioning the survey and consequent report “Surviving or Thriving? The state of the UK’s mental health.” The authors of the report wrote that despite “many areas of advances in human health we are not seeing these reflected in mental health. If anything, the signs are that we are slipping back.” They backed this up by shockingly disclosing that only 13% of those surveyed in England, Scotland and Wales had “high positive mental health” and that nearly “two-thirds of people say that they have experienced a mental health problem” and others were clearly “just about surviving.”

The authors further reported that those of us living with either low household incomes or  unemployment have worse mental health than those employed at higher incomes. 3 in 4 people at the lowest income level, 85% of unemployed people, 7 in every 10 women, 7 in every 10 young adults (aged 18-34), and 7 in 10 people living alone experienced poor mental health. Additionally, the authors quoted the “Mental Health and Wellbeing in England: Adult Psychiatric Morbidity Survey 2014” (published last year) which revealed that every week 1 in 6 adults experienced a “common mental health problem, such as anxiety or depression. 1 in 5 adults reported that they had considered taking their own life at some point.”

I sat in silence and reflected upon those numbers and felt an overwhelming sadness. So much unnoticed desperation and despair! Swiftly followed by anger; “Who can I blame?” “Where shall I point my finger?” You see, all this correlated almost exactly with our own experiences in the ADHD world.

It’s been almost 10 years since we set up AADD-UK with hope and optimism. During that 10 years, the National Institute for Health and Clinical Excellence (NICE) published ADHD Guidelines in which adults were included for the first time. Of course there was some initial resistance but over the years more and more professionals  became interested, more and more moved into the field, more and more research confirmed ADHD as valid (even the usual tabloid suspects now, tentatively,  report positive ADHD stories) and there are more ADHD services in the UK than the 3 that existed 10 years ago.

But all is not well! As awareness of ADHD grows, funding for ADHD services dwindles. Some GP’s, due to funding shortages, are reluctant to refer us to services.  In truth, not all of the ADHD services have enough funding to meet the NICE Guidelines. It’s even been suggested, in one known circumstance, that the Guidelines be disregarded. A couple of services have surreptitiously tried to close. Some have decided not to publicise their contact details for fear they’ll get more referrals than allowed for by their funding. Of course, this means that waiting lists are getting longer and longer; even up to 2 years long! It’s true that gate keepers and sign posters cheerily point us to psychological therapies suggesting we use them while waiting. But guess what? Yep that’s right! We’re shuffled onto the end of another waiting list where some of us must try not to listen to whispers about the low quality of the offerings. So, there we are, stuck waiting, struggling to cope with abysmally low self-esteem, hurting, lonely, barely surviving. What does this matter when it’s said that ADHD makes us resilient, that we’re used to hard knocks, that we’re survivors?  It matters because we understand too well that surviving is not thriving and that knowledge is painful!

And what about those of us who’ve been diagnosed and are taking medication? We’re all thriving right? Well not exactly. Medication is indeed all that some of us need. We can now concentrate as well as focus better. That helps us to, at last, move on and up. It helps us to feel relief as well as feel the joy of achievement. Some of us can even choose between seeing a consultant privately for follow-ups or waiting months to see the same consultant on the NHS. There’s a group of us too who, after a competent diagnosis of ADHD, don’t need any further help, not even medication. It’s enough that somebody listened, took us seriously, evaluated patterns underlying our difficulties, and found a way to help us understand. That’s all we needed to find our own way, to thrive and flourish.

Some of us, though, have been so pressured and battered by an uncomprehending and stigmatising life that the clarity that comes with medication also carries the aching revelation that our graceful childhood spirits have turned into cut-down and subjugated ghosts. Taking the right medication is not all we need.  Before we can move from surviving to thriving we need help, we need to rediscover our true spirits, our real potential.   Yet we’re stuck in the low income, or underemployed, or unemployed bracket. So we ask the NHS for help, get sign posted to psychological therapies, by the same cheery folk our clan members encountered, and off we shuffle to join the end of a waiting list.   There we are waiting, masks firmly in place (we don’t want pity), acting as if we don’t care but feeling worn-out, inside crying, mourning for our lost and trusting childhood.  We’re surviving and that’s all!

Still, at least the mere fact that we’re waiting allows us a bit more hope than those of us who’ve not been noticed. Some of us in this group are being shuffled from one wrong diagnosis to another wrong diagnosis, from one wrong medicine to another wrong medicine.  Never having our true reality heard or acknowledged. Some of us become disheartened, lose faith and sink into helplessness. And then what about those of us who learn to believe from early on that we are seemingly born to live life as a failure, never understanding why that appears to be our fate? All of us too are barely surviving!

It’s such a waste because every single one of us with ADHD has the potential to flourish. We would love to use our strengths and abilities to help others, to be a benefit. We don’t need much.  Just the right attention and the right support at the right time. Actually you know what? That’s not hard to provide!

Now I’m angry again so I’m jumping right off the fence and pointing my finger squarely at you, the Government. I’m pointing at you, Theresa May, as well as at you, Jeremy Hunt.  If you get back in charge, for goodness sake stop with your wasteful changing, privatising and building inequality into the health service. Instead, if you really care about helping people to thrive, helping the country to prosper (you do, don’t you?), stand back and for once look at the big picture.

The prevalence rate for children with ADHD is between 5 to 7%, of whom approximately 65% will continue to experience symptoms in adulthood. In other words, roughly 3% to 4% of all adults have ADHD. To make it clearer, about 1 in 25 adults have ADHD. That’s a lot of us! That’s a lot of us costing you a lot of money!

Leaving us unrecognised, undiagnosed, untreated or treated ineffectively, or pushing us onto waiting lists is costing you, the Government, a lot of money in lost tax revenue, inappropriate treatments, repeat visits to A&E, clearing up after our accidents, looking after our brothers and sisters in prisons, and so on and so on (you want evidence, ask and we’ll give it freely). It’s cheaper, far cheaper, to increase NHS mental health funding so that all of us can receive proper help! We want to use our strengths, abilities and skills.  We can use them to thrive and flourish!

And here’s a final note, the need for mental health awareness and funding did not disappear with the end of Mental Health Awareness Week.  The two thirds of people living in England, Scotland and Wales who’ve experienced mental health problems, including all of us with ADHD, are still here on Monday morning. Funding and treatment for everybody experiencing mental ill health is still needed and is still vital. With that, and with preventative care, all of us will thrive and flourish and so too will the country.

I’ve had my say for now! It’s time for you, the Government (whichever of you ends up in charge) to listen and act!

ADHD & Mind Wandering Research

UK Adult ADHD Network (UKAAN) is currently investigating the role of excessive/uncontrolled mind wandering in ADHD. As part of this research they are conducting a survey on mind wandering, ADHD and the links to educational and occupational outcomes, including both potential impairments and benefits (such as creativity) that might be linked to mind wandering in ADHD.

They have already collected a large sample of around 1,000 non-ADHD controls. Now they wish to compare this to findings from patients who have been diagnosed with ADHD. They are therefore looking for clinicians working in adult ADHD clinics to help them by handing out information sheets to patients with ADHD which invites them to take part in this research by completing the online survey.

If you are willing to assist in this research please contact Professor Philip Asherson by email (philip.asherson@kcl.ac.uk). They would like your name, work address and name of your NHS Trust, or if in a private clinics, just the address of the clinic, to add your site to the current ethics for this work.

If you wish for further information please contact Professor Philip Asherson. He can then send you a copy of their recent publication on this topic, and a rating scale that can be used to measured excessive mind wandering in adults with ADHD.

Research Project at the Institute of Psychiatry, Kings College London

The Departments of Child Psychiatry and Forensic and Neurodevelopmental Science at the Institute of Psychiatry, Psychology and Neuroscience (IoPPN), King’s College London, are looking for right-handed male volunteers with ADHD between 18-35 years of age to participate in a research project.

The project is studying areas that may cause difficulties for some people with ADHD, such as attention, timing and decision-making. This is not a treatment trial and participation in this project won’t help you directly. However, they hope that this project will help them better understand these difficulties and develop ways of helping people with ADHD who may have problems in some of these areas. For further details please UKAAN here: https://www.ukaan.org/research-by-ukaan-members.htm

If you have any questions, please contact Dr Clodagh Murphy at the IoPPN: clodagh.m.murphy@kcl.ac.uk,

or call 0207 848 0984.

BBC Horizon Documentary

BBC Horizon is making a documentary exploring ADHD. There will be two strands to the documentary and so they are looking for two groups of contributors with experiences with ADHD as follows:

Call out #1

 “Does your child have ADHD?

 BBC Horizon is making a documentary exploring ADHD, aiming to create a wider public understanding of the condition. Presented by Rory Bremner, a comedian with a particular interest in ADHD, the BBC is hoping to shed light on this commonly misunderstood condition.

 The BBC wants to meet parents of children with ADHD who can tell them about what life’s like; and to also hear from their child about their own experience of the condition. 

If you’re interested, please get in touch with Zoe on zoe.huntergordon@bbc.co.uk, just for a chat in the first instance.  The BBC will be very pleased to hear your story. 

  Call out #2

 “Do you have ADHD? Do you feel it has it impacted your life?

 BBC Horizon is making a documentary exploring ADHD, looking at the variety of ways that mild to severe ADHD can impact people’s lives in both a negative and or even positive way: with the aim of to increasing public understanding of this condition. It will be presented by Rory Bremner, a comedian who has first-hand experience of the condition.  For a specific item of the programme, we want to hear from people with ADHD who feel their condition might have contributed to them entering the criminal justice system.

Please do get in touch if you think this is you. In the first instance, it would just be a chat on the phone – you do not need to commit to anything upfront.

The BBC appreciates the sensitive nature of the subject, and will handle all calls with the utmost confidentiality and respect.

 The BBC is interested by the fact that ADHD is overrepresented in the prison population, and are interested in speaking with people who feel as though their ADHD may have contributed to their criminal behaviour.  They hope that by sharing your story, the BBC can help to shed light on this commonly misunderstood disorder.

If you’re interested, please get in touch with Zoe on zoe.huntergordon@bbc.co.uk: just for a chat in the first instance.”

 

UKAAN Conference: ADHD in the Mainstream

The UK Adult ADHD Network (UKAAN) will host its 6th Congress from Wed 20th to Fri 22nd September 2017. This 3 day conference will take place at the Mermaid Conference and Events Centre, which will accommodate up to 600 delegates in a Theatre. The venue is situated between the City and the West End, on the North Bank of the Thames, and enjoys spectacular views towards the Tate Modern, Globe Theatre and the Millennium Bridge.

The conference is titled ‘ADHD in the mainstream’ to reflect the rapid increase in recognition and treatment of ADHD by adult mental health services. ADHD is a common disorder effecting around 5% of children and 3% of adults, with symptoms and impairments that overlap with other common mental health disorders. The role that ADHD plays in the health of many adults presenting with mental health problems is now much more widely recognised, yet recent evidence suggests that in many cases the disorder still goes unrecognised or treated. Our vision is to bring ADHD into the mainstream, so that all mental health professionals have the knowledge and understanding to diagnose and treat ADHD, in the same way as other common mental health disorders.

This meeting aims to raise the level of awareness, knowledge and expertise among health care professionals about people with ADHD and provide a better understanding of the persistence of the disorder, the development of comorbid mental health problems and the delivery of effective treatments.

The program will be delivered by prominent opinion leaders, clinical experts and internationally recognised investigators and is designed to cover key topics relevant to the diagnosis and treatment of ADHD from adolescence to early and late adulthood. The selection of speakers is particularly important so that the audience can hear directly from the most experienced professionals working in this rapidly developing area of clinical psychiatry.

Registration is now open on the UKAAN Website http://www.ukaan.org/adhd-in-the-mainstream/

 

ADHD Services Mapping Survey

Please help us with a very important study from the University of Exeter. The project is about children and young people with Attention Deficit Hyperactivity Disorder in transition between children’s services and adult services.

One piece of the project, however, is a mapping survey designed to find out which adult ADHD services are out there for young people with ADHD aged 18 and over to transition into from children’s services. This means that this survey can be answered by any person of any age who has knowledge of ADHD services, whether they have ADHD themselves or not and whether they are a parent/carer or not.

If you click on this
link you will be guided to a page where you can tell the researchers about adult ADHD services in your area – or equally important the lack of adult services. The online questionnaire asks no more than 8 questions and should take less than 5 minutes to complete.

The survey is anonymous and your response will contribute to the creation of a map detailing adult ADHD services currently available in the UK. If you want more information about the project, the research team have a website where you can find more information here

Thank you very much for helping us with this very important project.

Please note the survey is closing on Saturday, 31st December so please feel free to share this with anyone who may not yet have had a chance to complete the survey.

 

Bristol Adult ADHD Support Group Meeting

The Bristol Adult ADHD Support Group Meeting has an important visitor, Ian Popperwell, coming to the next support group meeting on Friday, 9th December.

Ian is a commissioning manager from the Bristol Clinical Commissioning Group (Bristol CCG) and he is the lead manager responsible for commissioning (i.e. buying) the services provided by the ADHD NHS Clinic at the Petherton Resource Centre in Hengrove, Bristol.

Ian is interested in talking with group members about their experiences of the current ADHD service (assessment/diagnosis and medication) as well as also hearing from them  about other kinds of support and interventions that they feel would also meet their needs. This is a very good opportunity for the voices of people with ADHD in Bristol to be heard.

More information about the support group meetings can be found here.

Online Survey on Mind Wandering

This is an online survey investigating if mind wandering can lead to differences in our education, occupation, and creativity. Everyone’s mind wanders, but we all do it to a different degree, so what is its impact? For some it may be useful and lead to creativity or working in a certain profession. For others it may have a negative effect, perhaps by making it difficult to learn at school. Severe mind wandering that just won’t seem to stop could also be associated with attention-deficit/hyperactivity disorder (ADHD). By exploring the relationship between these things researchers can better understand the impact of mind wandering and the extent to which it affects peoples’ lives.

This project is being organised by researchers at the MRC Social, Genetic and Developmental Psychiatry Centre at King’s College London.

Before you decide if you would like to take part, it is important that you understand why the researchers are conducting this research and what your participation will involve. Please read this information sheet carefully and discuss it with others if you wish. Also, please ask the researchers if anything is unclear or you would like further information. Contact details can be found on the Information Sheet here https://drive.google.com/file/d/0B0s7RDt2l670bVBfNFEzSVRqbGc/view

What participating involves
You must be aged 16 or over to participate. You will be asked to complete the online survey, which takes around 10 – 15 minutes. You do not have to complete it in one session; you can save your responses and return to it at a later time (but it must be within 1 week of starting the survey). You will be asked questions about your education, occupation, health, behaviour, and personality. By participating you can contribute to research that can further our understanding of the implications of mind wandering.

Participation is entirely voluntary. You should only participate if you want to; choosing not to will not disadvantage you in any way. If you decide to take part you can still withdraw from the study at any point without giving a reason, up until the point of data analyses. Selecting the relevant boxes in the electronic consent form indicates your consent to participate in this research, and for all submitted data to be used. This includes submission of partially completed surveys, whereby pressing the ‘next’ or ‘continue’ button indicates your consent for data entered up to that point to be included in the study.

There will also be a chance to be entered into a prize draw to win one of five £50 Amazon vouchers when you complete the survey.

Confidentiality
The Survey is hosted by Qualtrics (www.qualtrics.com), a survey platform that treats all data as highly confidential. The data does not belong to them and they do not know what data is being collected. They use best industry practices to keep data safe and their servers are protected by high-end firewall systems. Any information you provide in this study will be kept strictly confidential, and any personal details you provide will be kept separate from your survey responses ensuring anonymity. You will be provided with a unique identification number which will be used for all your data stored on our database. Information will be handled in accordance with the UK Data Protection Act 1998. During analyses individual data will not be identifiable.

Study findings
Results arising from this study will be included in a PhD thesis and presented at international academic conferences and published in academic journals. The researchers may also disseminate research findings through media outlets, including social media sites (e.g. Facebook, Twitter).

Questions and queries
If you have any questions or require more information about this study, please contact the researcher. Contact details are on the information sheet.

To complete the survey, please use the following link:

https://kcliop.eu.qualtrics.com/jfe/form/SV_bl4sG8MsbQQt7Mh

 

The CATCh-uS ADHD Survey is now live

Please help us with a very important study from the University of Exeter. The project is about children and young people with Attention Deficit Hyperactivity Disorder in transition between children’s services and adult services.

One piece of the project, however,  is a mapping survey designed to find out which adult ADHD services are out there for young people with ADHD aged 18 and over to transition into from children’s services. This means that this survey can be answered by any person of any age who has knowledge of ADHD services, whether they have ADHD themselves or not and whether they are a parent/carer or not.

If you click on this link https://www.surveymonkey.co.uk/r/CATCh-uS_SU you will be guided to a page where you can tell the researchers about adult ADHD services in your area  or equally important the lack of adult services.

The online questionnaire asks no more than 8 questions and should take less than 5 minutes to complete.

The survey is anonymous and your response will contribute to the creation of a map detailing adult ADHD services currently available in the UK.

If you want more information about the project, the research team have a website where you can find more information: http://medicine.exeter.ac.uk/catchus/mapping/

Thank you very much for helping us with this very important project.

 

The CATCh-uS ADHD Survey is now live

Please help us with a study from the University of Exeter. The project is about children and young people with Attention Deficit Hyperactivity Disorder in transition between children’s services and adult services.

One piece of the project, however,  is a mapping survey designed to find out which adult ADHD services are out there for young people with ADHD aged 18 and over to transition into from children’s services. This means that this survey can be answered by any person of any age who has knowledge of ADHD services, whether they have ADHD themselves or not and whether they are a parent/carer or not.

If you click on this link https://www.surveymonkey.co.uk/r/CATCh-uS_SU you will be guided to a page where you can tell the researchers about adult ADHD services in your area – or equally important the lack of adult services. The online questionnaire asks no more than 8 questions and should take less than 5 minutes to complete.

The survey is anonymous and your response will contribute to the creation of a map detailing adult ADHD services currently available in the UK. If you want more information about the project, the research team have a website where you can find more information: http://medicine.exeter.ac.uk/catchus/mapping/

Thank you very much for helping us with this project.

 

 

Important Update to Wiltshire NHS ADHD Service

February 25, 2016

The NHS Wiltshire Clinical Commissioning Group has now put an expanded explanation on their website as follows:

The contract for Attention Deficit Hyperactivity Disorder (ADHD) services in Wiltshire is held by Avon and Wiltshire Mental Health Partnership Trust (AWP). The current contract will come to an end at the end of March. We have negotiated a temporary ADHD contract with AWP to cover the period from 1 March 2016 until 31 August 2016. This extension will ensure that a large proportion of the current services can continue until we are able to review the whole contract, and a permanent two year contract can be agreed. The new contract will be in place by 1 September 2016. If we achieve this earlier you will, of course, be advised accordingly.

Until this time AWP will continue to provide an ongoing service for:

•Existing patients who have already been assessed and diagnosed
•Existing patients who require ongoing follow up and prescribing
•Patients already being cared for under the shared care process
•Urgent and/or prioritised new referrals as approved by the CCG Exceptions Panel

However, AWP will not be accepting new referrals unless identified as above.

Please note the PALS team at the CCG advise that they have requested this information is updated to confirm that it relates to the adult service as this is not clear.

– – – – – – – – – – – – – – – – – – – – – – – – –

February 23, 2016

The Bristol Adult ADHD Support Group has received the following  update regarding the Wiltshire NHS ADHD service:

Wiltshire CCG are now pleased to advise that an extension of their contract with AWP has been agreed with effect from 1st March. This is designed to give both the CCG and AWP breathing space to agree a more permanent 2 year contract and negotiations for this are already underway.

During the period of the extended Wiltshire contract, all existing patients will be seen as they would have expected and no longer need to refer back to their GPs.

For the time being however, no new patients will be seen until current capacity issues have been resolved and these patients may wish to consult their GP again in the meantime. It is important to note that these arrangements apply ONLY to Wiltshire patients.

Therefore there will now be NO change if you live in Wiltshire and ARE already receiving treatment from the Wiltshire NHS ADHD service.

For the time being things are more difficult for adults living in Wiltshire who want to be assessed for ADHD. If you are in this situation, I suggest you go to your GP and politely but as clearly as possible state your reasons for wanting an assessment (written evidence is always helpful).

If you get turned down which seems likely at the moment, either ring or email the NHS Wiltshire Clinical Commissioning Group’s Patient Advice and Liaison Service (PALS) on 0300 123 2103 (live 9am – 5pm; answer phone outside of office hours) or WCCG.complaintsandpals@nhs.net and politely tell them you want to make a formal complaint. More information here

If you still cannot get an assessment, then ask your MP to write a letter on your behalf. Here’s a link to the Wiltshire MP’s

– – – – – – – – – – – – – – – – – – – – – – – –

February 13, 2016

From 1 April 2016, the Attention Deficit Hyperactivity Disorder (ADHD) service delivered in Wiltshire by AWP will be decommissioned. AWP have informed patients affected by this decision, and the Wiltshire Clinical Commissioning Group (CCG) have informed all their GPs.

Please note that this change affects the Wiltshire ADHD service only. It does NOT affect the Wiltshire Autism Diagnostic Service (WADS), the rest of AWP’s ADHD service, or any other service provided by AWP.

AWP has provided an ADHD service for adults living in Wiltshire, on behalf of Wiltshire CCG, since 2014. Over the last year, Wiltshire CCG and AWP have been reviewing the current ADHD service. AWP proposed a number of  new clinical service models that complied with NICE guidelines, however at this time a decision has been taken not to extend the contract beyond 31 March.

Anyone who has concerns about how this change will affect them can speak to the Wiltshire PALS (Patient Advice and Liaison Service) . Contact details for Wiltshire PALS is available from Avon and Wiltshire Mental Health Partnership NHS Trust

– – – – – – – – – – – – – – – – – – – – – – –

As a reminder to those who make commissioning decisions under the Equality Act 2010, the definition of a disability is a physical or mental impairment that has a substantial and long-term negative effect on someone’s ability to do normal daily activities.

The public sector equality duty (section 149 of the Equality Act) applies to public bodies and those carrying out public functions.  It supports good decision-making by ensuring public bodies consider how different people will be affected by their activities.  It also helps them to deliver policies and services which are efficient and effective, accessible to all, and which meet different people’s needs.

The equality duty requires public bodies to have due regard to the need to:

eliminate unlawful discrimination, harassment, victimisation and any other conduct prohibited by the Act;

advance equality of opportunity between people who are covered under the equality act and  people who are not;

foster good relations between people who share a protected characteristic and people who do not share it.

Having due regard means consciously thinking about the three aims of the equality duty as part of the process of decision making, including the provision of a robust health and safety management system.

Key Challenges and Practical Solutions – a Clinician focused conference on Adult ADHD

The UK Adult ADHD Network (UKAAN) will host its 5th Congress on Fri 22nd and Sat 23rd April 2016. This 2 day conference is entitled ‘Key Challenges and Practical Solutions – a Clinician focused conference on Adult ADHD’

There is growing recognition of the role of ADHD in adult mental health and the availability of effective clinical and psychosocial interventions. The conference will build on this growing expertise by providing a 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 adolescent and adult psychopathology. This meeting will address important clinical questions relating to the management of ADHD in adults and will be relevant to clinicians interested in the mental health of people from the adolescent years through to early, middle and later adult life.

This meeting aims to raise the level of awareness, knowledge and expertise among health care professionals about people with ADHD as they grow older; and to provide a better understanding of the persistence of the disorder and the development of comorbid mental health problems. The program will be delivered by prominent opinion leaders, clinical experts and internationally recognised investigators and is designed to cover key topics relevant to the diagnosis and treatment of ADHD during the critical period from adolescence to adulthood. The selection of speakers is particular important so that the audience can hear directly from the most experienced professionals working in this rapidly developing area of clinical psychiatry.

More information can be found on UKAAN’s website

ADHD in Adults: a conference for people with experience of ADHD in adulthood

The Maudsley adult ADHD service is hosting their first national conference for adults with lived experienced of ADHD on Friday, 22 January 2016 from 09:00 to 16:00 (GMT) at the ORTUS learning and event centre – 82-96 Grove Lane London, London SE5 8SN .

This conference has been developed in a collaboration between mental health professionals and service user experts with a grant from the Maudsley Charity. The aim of this important event is to raise awareness of ADHD in adults and provide an opportunity to come together to share experience and learning.

Session highlights:

Research and clinical updates

Positive experiences of ADHD

What support is available for adults with ADHD?

ADHD in the workplace

How is ADHD portrayed in the media?

Mindfulness and ADHD

There is a £5 cover charge which will be refunded if registrant attends conference. Registration includes access to the full conference, refreshments and lunch.

Here is a link to more Information

Here is a link to the Agenda

Here is a link to Booking Information

Updating our website

We are currently updating our website and so far we have added new information to 3 of our Library pages, namely ADHD in the NewsResearch Articles, and Books. And we have also added new ADHD events to our Calendar.

And at long last we are in the process of adding new names, and updating contact details, on our lists of Psychiatrists, Psychologists/Counsellors, Occupational Therapists (a brand new list so we’ve only got one name at the moment), Coaches, and Support Groups.   So if you would like to have your services added to our lists,  or to have your details updated, you will find how to contact us on the relevant page. There is no charge for adding your details to our website because we are managing and maintaining this website as a free resource for the ADHD community.

When we have completed our lists of Help & Support, we will be updating and adding new information to the remainder of our pages so please bear with us.

And in the meantime please feel free  to join us in our support forum where you can ask questions and chat with others about all ADHD matters.

ADHD & Victoria Derbyshire Programme

AADD-UK has received an email from Sarah Bell, BBC News Impact Producer, asking us to pass on her thank you to everyone for getting in touch; she had an incredible response.

Here are two clips from the programme:

Clip One

Clip Two

And here is an online article from the BBC

BBC2 Victoria Derbyshire Programme & adult ADHD

AADD-UK has received an email from Sarah Bell who is a producer for the Victoria Derbyshire programme on BBC2 and the News Channel.

She is hoping to make a film about adult ADHD, based on a study by King’s College London which identifies significant differences in brain activity between children whose attention deficit hyperactivity disorder (ADHD) continues into adolescence and adulthood, and those who later grow out of the disorder. They would like to make a short film about someone who has the condition and how it affects their life, perhaps spending a day with them. They would then hope to follow it up with a studio discussion. Sarah has assured us that this will be sensitively and responsibly handled by the BBC. This sounds like a good and positive opportunity for our voices to be heard.

Ideally they would like to start filming next week.

If anyone is interested, or would like more information please contact Sarah directly at sarah.bell@bbc.co.uk.

Here’s a link to information about the new study that has got the BBC interested in adults with ADHD

Complaint to Chief Whip re Mr Graham Allen MP & ADHD ‘not a real disease’

Update on 2nd May 2014: to email sent to the Opposition Chief Whip regarding Graham Allen MP and his guest Dr Bruce Perry of “ADHD not a real disease” infamy.

I have not yet had a reply to the letter below which I sent on Tuesday, 8th April 2014 despite the fact that I was told by a member of Rosie Winterton’s staff that we would get a reply within two weeks.

I was polite and gave them three weeks to allow for the Easter week, and then rang Rosie Winterton’s office yesterday morning (Thursday, 1 May 2014) at 9:15 am.  An equally polite chap answered the phone, he recognised the name of AADD-UK and he knew about our complaint.  He explained that the Special Advisors (Spads) were “looking at it” and would get back to us. I asked which Spad in particular is “looking at” the complaint, and if he had any idea when the Spad would get back to us.  The polite chappie said he didn’t know when we would get an answer because he’s just the civil servant, but he did give me the name of the Spad, Luke Sullivan. The civil servant also told me that he’d again put our complaint in front of Luke Sullivan.

Fingers crossed this is more promising than it sounds! Somehow the “Thick of It” popped into my mind during this conversation.

Just as a BTW I see that Luke Sullivan was a Spad in the Chief Whip’s office when Gordon Brown was Prime Minister (2009) which surprised me because I thought Spads got sacked when their bosses left. The document I looked at also gave his pay scale which wasn’t bad, not bad at all considering that he was only in pay band 2 which was near the bottom.

And just in case you are wondering who Rosie Winterton is, well she was Labour’s pension minister when The Telegraph wrote about her on 29th May 2009 in relation to the expenses scandal.  And if you read the article (click here) you will see that her salary wasn’t bad, not bad at all, and much, much better than Luke’s.

Now I’m going to confess to you that before  I rang Rosie Winterton’s office I had an ADHD moment and by mistake I rang the office of the Parliamentary Commissioner for Standards (that’s the office that found Maria Miller MP guilty of claiming £45,000 in expenses to which she wasn’t entitled, and was then subsequently overruled by a committee of MP’s–beg their pardons there were three lay members on the committee except of course they weren’t allowed to vote).

After we’d sorted out that I wasn’t talking to the person I thought I was, we had a nice chat about how members of the public can hold MP’s accountable for their conduct (after I’d explained that we’d  already written to Ed Miliband,  Harriet Harman, Rosie Winterton, and of course Mr Graham Allen himself and were still waiting to hear from any of them) and as a result of our little chat I’ve now learnt that as members of the public we’ve got 3 options namely vote next year (duh!!), get legal advice (expensive waste of money when we already know Graham Allen is wrong,) or go to the media (aha!).

So there we are for the moment; waiting to hear something (hopefully more than nothing)from Mr Luke Sullivan, SpAd to Opposition Chief Whip, Rosie Winterton MP Labour.  We’ll keep you updated!

Further Update: 2nd May 2014 p.m.

And now we read in the Closer that Katie Hopkins (the former apprentice that Sir Alan Sugar called unemployable) has made it her mission to attack mothers of children with ADHD.  Even worse according to today’s  article in the Closer, Katie Hopkins was “inspired into ‘badmouthing’ ADHD children by Dr Bruce Perry” and what’s more the remainder of the article contains several unhelpful remarks about ADHD that were made by Katie’s ‘hero’ on the eve of his visit to the UK.  Dr Perry was invited to the UK by Graham Allen MP. So thank you very much Mr Allen for encouraging the likes of Katie Hopkins!

Tuesday, 8th April 2014

The following email has been sent from AADD-UK to the Opposition Chief Whip:

Right Honourable Ms Rosie Winterton, Opposition Chief Whip 

I am writing on behalf of Adult Attention Deficit Disorder – UK (AADD-UK) to make a complaint about Mr Graham Allen. We have tried to resolve the matter directly with Mr Allen but he has not responded.

 

Mr Allen has endorsed an article that appeared in the Observer on Sunday, 30th March 2014 titled “ADHD ‘not a real disease’ says US neuroscientist.” Mr Allen has placed a photograph of this article (30th March) on his official Twitter account (@GrahamAllenMP) along with the caption “Dr Bruce Perry, my Early Intervention hero, in UK today, want to attend his EIF events over next 2 days?”

 

In addition, Mr Allen also has placed a photograph on Twitter (1st April) which is captioned “Dr Bruce Perry speaks to Labour shadow ministers this morning”, this photograph and caption gives the appearance that Dr Perry’s views could potentially also be the Labour Party’s views (I have attached copies of Mr Allen’s Tweets).

 

We feel that Mr Allen is potentially in breach of the Code of Conduct for Members of Parliament namely:

 

1. Members have a duty to uphold the law, including the general law against discrimination.

 

We feel that it is harassment for a public figure, an MP, to invite and host a doctor who in the past has spoken against ADHD, and then to publicly approve his guest’s stigmatising opinion made on the eve of his visit to the UK that ADHD is not real. It is harassment not only because ADHD is a recognised disability that meets the requirements for a protected characteristic under the Equality Act 2010, but also because people with ADHD in the UK already had significant problems with daily living intensified by shame generated from home-grown discriminatory comments and behaviour.  We did not, therefore, need Members of Parliament validating such derogatory opinions and thus causing us further humiliation and distress.

 

2. Members have a general duty to act in the interests of the nation as a whole; and a special duty to their constituents.

 

Given that the prevalence rate for ADHD in the UK is between 2-5%, it is more than likely that Mr Allen has constituents with ADHD.  His inviting and hosting a guest such as Dr Perry who openly speaks his mind about ADHD, followed by Mr Allen’s public endorsement of Dr Perry’s views makes it nearly impossible for Mr Allen’s constituents who  either have ADHD themselves, or care for someone with ADHD, or have a friend or relation with ADHD to contact him and ask him to represent their interests and concerns in the House of Commons.  It also means that they are excluded from political activities for as long as Mr Allen remains their MP.

 

The National Institute of Clinical Excellence, in 2008, completed a full review of the diagnosis and treatment of ADHD across the lifespan and published guidelines in September 2008.  These guidelines did help to stimulate the development of service provision for ADHD in the UK.  But ADHD services, particularly for adults, are still too scarce in the UK.  This is of relevance for children and young people because as they transition from Child and Adolescent Mental Health Services there are frequently no adult services available in their area.  And unfortunately austerity measures have meant that many mental health services have been cut, and sometimes waiting lists for ADHD services can be as long as 18 months!  Indeed sometimes the barriers are so high that people with ADHD have resorted to asking their MP’s for help accessing services. This makes it all the more disappointing that Mr Allen presents himself as endorsing the view that ADHD is not real, because this means that people will be deterred from going to their MP’s for help, not just for ADHD matters but for any reason.

 

Mr Allen is not setting a good example and this is not good for the nation because the proportion of people receiving treatment for ADHD in the UK is lower than the prevalence rate and failure to treat ADHD is costly to society. There is plenty of evidence to show that untreated ADHD leads to increased rates of unemployment, addictions, criminal convictions, and poor social adjustments.  I have included links to relevant documents at the end of this email.

 

In addition, when Mr Allen endorsed Dr Perry’s opinions in a Tweet and followed this up with a Tweet accompanied by a photograph of Labour Shadow Ministers listening to Dr Perry, and a photograph of Dr Perry with Francis Maude the perception was created that it could be Labour policy as well as Coalition Government Policy to discount ADHD as a valid disorder. That’s a deterrent that would inhibit the rest of us from also engaging with the entire political process.

 

3. Members should act on all occasions in accordance with the public trust placed in them. They should always behave with probity and integrity, including in their use of public resources.

 

Dr Perry would possibly not have had a chance to express his opinions in the UK media if he had not been invited to come and meet Government ministers by Mr Allen.  But he was invited here, and his opinions have been endorsed and validated by Mr Allen, not just  by the publication of the photograph that we described  earlier, but by the fact that Mr Allen helped Dr Perry meet with Government officials including Iain Duncan Smith, Jeremy Hunt, and Francis Maude (see attached photograph) and also with Labour Shadow Ministers.  This creates the further perception, rightly or wrongly, that taxpayer money is being used to help promote anti-ADHD views, as well as to pay for the time of ministers and others who met with Dr Perry, who sat and listened to his presentations, and who in at least one case was photographed with him.   

 

4. “Members shall base their conduct on a consideration of the public interest, avoid conflict between personal interest and the public interest and resolve any conflict between the two, at once, and in favour of the public interest.” (V, 10)

 

We most definitely feel that Mr Allen has confused and mixed his personal interests and opinions with public interests regarding his work in early intervention, his reports about early intervention, as well as his creation of the Early Intervention Foundation.   We are concerned that Mr Allen invited, hosted, and endorsed Dr Perry who on the eve of his visit to the UK to meet with Government ministers on behalf of Early Intervention expressed to a major newspaper the biased and inflammatory opinion that ADHD is not real because that makes us wonder how Mr Allen’s Early Intervention Foundation will be able to provide “practical advice and support to those trying to make Early Intervention a reality on the ground” when at the core there appears to be a complete lack of knowledge and acceptance that a common neurological disorder affecting behaviour and attention is indeed real.

 

To resolve this conflict in favour of public interest we feel that ADHD should always be a consideration in anything relating to early intervention whether it be of Mr Allen’s design or that of others, and we would like written assurance regarding that. We should also like Mr Allen to withdraw all photographs and references relating to Dr Perry from his Tweets and that includes the photograph of the Observer article. And finally we would like a letter of apology from Mr Allen which we will publish.

 

At the bottom of this email is a sampling of some of the articles that appeared in the traditional press repeating response to Dr Perry’s opinions (Dr Perry was also widely quoted in many other news sources, various blogs, forums, Facebook, and Twitter), as well as a sampling of information about ADHD.

 

I look forward to hearing from you.

Dr Bruce Perry: ADHD is “not a real disease”

AADD-UK has sent the following email to Graham Allen MP with copies to Ed Miliband, Harriet Harman, & Andy Burnham:

Dear Mr Allen,

I am very sorry to say this but one of your tweets (at 12:46 p.m. on Sunday, 30 Mar 2014)  has caused considerable offence. It is a photograph of a newspaper article entitled “ADHD ‘not a real disease’ says US neuroscientist” and above it you have placed the following caption: “Dr Bruce Perry, my Early Intervention hero, in UK today . . .”.  

I have attached a copy of your tweet. 

The offence caused by the photograph is made worse by your use of the word “hero” to describe Dr Perry.  

Also, I don’t know if Dr Perry was misquoted in the Observer, but if he wasn’t it was not helpful for your guest to make such statements about ADHD (an area in which he does not have specialised knowledge) on the eve of his visit to the UK.  His remarks, as stated in The Observer, were very widely publicised in many reputable and otherwise newspapers, blogs, and forums. And all this at a time when people with ADHD are already struggling to overcome considerable stigma and discrimination as well as struggling to access much needed help so that they can live fulfilled lives. The firestorm of adverse publicity increased the distress and anxiety of many people with ADHD. 

Would you please consider taking down the offending tweet and offering an apology to people with ADHD. I appreciate that you are trying to do your best for children through the Early Intervention Foundation, but since mental health services (and other much needed services) have been badly affected by the coalition government’s cuts, we all, adults included, need at least some politicians that we feel will listen. 

I look forward to hearing from you.

So now we are waiting to see if they are listening! We’ll keep you updated!

Adult ADHD Support Groups UK Survey

Background and context

This survey came as a result of the researcher’s collaboration with AADD-UK and his regular attendance to 4 support groups which generated questions in relation to the development of adult ADHD support groups; how many groups are there in the UK, what is their membership and what do they do? The numbers of groups making contact with AADD-UK and its website has been growing in the last five years; they are very diverse in their organization, in what they provide and so are the local contexts in which they evolve. But they all have in common that they provide a much needed space for information, help and support for individuals who are or have yet to be diagnosed with ADHD as well as for their relatives and partners.

The aim of this survey was to provide an updated picture of the state of adult ADHD support groups in the UK; we hope this would in turn help individuals, families and professionals in accessing updated information on the AADD-UK website for better local signposting.

SUMMARY OF FINDINGS

1. Significant increase in numbers of support groups, starting from 2009, peaking in 2011 and an increase of membership.

It is worth noting a rapid increase in numbers of groups since 2009, but it is unclear if this trend will continue. Some groups have also folded in the last 2 years, mainly for reason of lack of funding and so the present economical context may make it difficult for some groups to develop or sustain their activities. An increase in membership has also been observed in the three groups the researcher has had contact with since 2009; the average attendance then was of 11 members per meeting, it is now in 2013 an average of 19 members per meeting with a gender mix of 52% male, 48% female.

2. 9 groups out of 23 , just under 40% , receive funding

There are more groups receiving funding than ever before, and the more recent groups seem very good at that. More data is required to understand how funding is accessed, if groups are set up as charities, social enterprise and how sustainable the funding is.

3. Three quarters of the groups are run by adults who describe themselves as having ADHD.

Despite the difficulties that ADHD can produce the large majority of groups are run by facilitators that identify themselves as having ADHD, and some do this in partnership with people who do not have ADHD. Out of the 14 new groups that have formed since 2009, 13 of them have been formed by adults identifying themselves as having ADHD. More research would help in understanding what their experiences bring in the running of a support group.

4. Wide range of activities, including 6 groups providing structured courses.

The groups are adapting to the local context and the needs of their members with ADHD and provide more and more services that are not provided anywhere else. But the main activity the groups have in common is the support and help they give to each other through the sharing of their experience of living with ADHD.

We believe these findings show a vibrant and growing community of support groups for adult with ADHD that are resourceful and determined to provide a safe place to share experience and information.. This survey highlights some of the common points between groups but the diversity between groups is also worth noting, each group is unique in its history and style and respond to particular local circumstances. The full survey is available in our library here.

Claude Jousselin and the AADD-UK team.

 

ADHD: separating facts from fiction

As part of the Science in Health Public Lecture Series, Professor Anita Thapar of Cardiff University will consider myths and misunderstandings around ADHD, and she will focus on what has been  learnt from science, and how this might help clinical and educational  practice.

The lecture which is free and open to the public will take place at Cardiff University Main Building.  It will take place on Thursday, 16th January at 19.00.  Booking is not needed. More information is available from Cardiff University here.

ADHD – Mind, Brain and Body

The UK Adult ADHD Network (UKAAN) will host its 4th Congress in September 2014, entitled ADHD – Mind, Brain and Body, in conjunction with ENAA and APSARD. The conference will take place over 3 days, at the Mermaid Conference and Events Centre which is situated between the City and the West End in London. Located on the North Bank of the Thames, it enjoys spectacular views towards the Tate Modern, the Globe theatre and the Millennium Bridge. The theatre will accommodate 600 people, and there will also be opportunities to attend parallel sessions throughout the event.

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 adolescent and 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.

This meeting aims to raise the level of awareness and knowledge among health care professionals about people with ADHD as they grow older; and to provide a better understanding of the causal pathways involved in the persistence of the disorder and the development of important clinical comorbidities. The program will be delivered by prominent opinion leaders, clinical experts and internationally recognised investigators and is designed to cover key topics relevant to the diagnosis and treatment of ADHD during the critical period from adolescence to adulthood. The selection of speakers is particular important so that the audience can hear directly from the most experienced professionals working in this rapidly developing area of clinical psychiatry.

The UK Adult ADHD Network (UKAAN) was established in March 2009 to provide support, education, research and training for mental health professionals working with adults with Attention Deficit Hyperactivity Disorder (ADHD). UKAAN was founded by a group of experienced mental health specialists who run clinical services for adults with ADHD within the National Health Service.

More information about the 4th Congress, and registration details are available on UKAAN’s website here.

UKAP – Reducing the costs of ADHD Across Education, Health and Care

UKAP (the UK ADHD Partnership) will host its first conference on Friday 4th April 2014. This one day event will take place at the Thistle Charing Cross Hotel, London, with a conference on ‘Reducing the Costs of ADHD across Education, Health and Care’ .

The aim of the meeting is to introduce, education, healthcare and allied professionals to the UKAP committee’s objective to raise the profile of ADHD on the political agenda in order that young people with ADHD gain better recognition and access to treatment across educational, occupational, youth justice and healthcare settings.

UKAP would also like to invite parents, carers other voluntary sector organisations and support groups who are working to support ADHD, to join them in their call to action which seeks to inform policy makers and authorities of the importance of early identification and intervention.

With presentations on the costs of ADHD, the impact on education, the family, the youth justice system, health service, accidental injury and driving, UKAP will consider what can be done to reduce the burden of ADHD on children, the family and more broadly in society.  The programme will include presentations by prominent opinion leaders, and internationally recognised clinical and educational practitioners.

This meeting will be relevant to all education and healthcare practitioners working with children and young people, together with allied professionals involved in multi-agency working including educational, occupational and youth justice settings, as well as commissioners and policy makers.

For more information and registration details see the UKAP website here.

Europe regulators not yet on board with adult ADHD due to concerns regarding diagnosis methods

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!

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

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

ADHD: Transition from Adolescence to Adulthood

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.

Update:Cambridgeshire’s denial of NHS treatment for adults newly diagnosed with ADHD

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!

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.

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!

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