Scottish ADHD Coalition Update

We want to thank everyone for their patience and continued support over the past 12 months. We acknowledge that the Scottish ADHD Coalition has not been active recently, and we sincerely apologise for any inconvenience or uncertainty this may have caused. The pause in our activates was due to some internal administrative challenges that we are pleased to announce have been resolved and you will now begin to see updates to our website and social media channels.

We remain deeply committed to our mission of supporting individuals with ADHD across Scotland and we are taking the necessary steps to strengthen our foundations so we can serve our community more effectively in the future.

Thank you for standing with us – we look forward to reconnecting and moving forward together soon.

Dear Sir/Madam

Decision to close the Neurodevelopmental assessment pathway

Decision to restrict assessment to ‘complex’ cases

As Chair of the Scottish ADHD Coalition, I am obliged to raise concerns on behalf of member and partner organisations with respect to the recent changes outlined above.

These fall into two distinct categories:

· The legality of the decision taken by NHS Tayside

· The clinical justifiability of the decisions taken by NHS Tayside

Legal concerns

Members and partners have raised with the coalition what appear to be significant flaws in the legal process surrounding the decisions above and, notable, what appears to have been:

• failure to consult those most likely to be affected by the decisions, including patients, patient’s families, third sector organisations involved in supporting individuals with ADHD, and local authorities who it is now being suggested will bear the burden of supporting young people with ADHD in the education system without the clinical expertise that was previously thought essential.
• The apparent lack of any credible impact assessment which we understand to be an obligation when public authorities make decisions of this nature. Members are particularly concerned that the absence of any formal diagnostic process will inevitably lead to an absence of treatment in cases where psychopharmacology is deemed to be the most appropriate option for what is a complex but treatable condition.
• The decisions taken appear to not only be discriminatory in that they affect most severely an already disadvantaged part of the population, but will inevitably lead to further subsequent discrimination in terms of educational/financial, economic, and health disadvantages.
• The decisions appear to conflict with Scottish Government policies regarding poverty reduction, substance misuse, educational attainment, suicide reduction, and young offending. If the Scottish Government supports these decisions, please indicate which departments have endorsed them given the known associations between ADHD and these risks.
• It is unlikely that the ‘self-identification’ of ADHD will provide a credible route to reasonable adjustments in the education system, workplace, or criminal justice system and this speculative suggestion has yet to be tested legally. Members are concerned that the decision was taken without consultation with those involved in these important functions.
• Given that until now, the diagnosis of ADHD could only be given by an appropriately qualified clinician, and by implication a null diagnosis likewise, the absence of a credible diagnostic pathway will inevitably create conflict between, for example, parents and school managers, if these parties disagree that ADHD may be a contributory factor
• when difficulties arise. Once again, there appears to be no legal precedent for determining the relative status of each party.
• The new criteria appear to represent a deviation from government endorsed evidence-based national guidelines (SIGN) which aim to minimise risk and maximise patient benefits. Thus it seems that NHS Tayside accept an increased risk of poor outcomes as a result of the proposed changes and that may impose a litigious responsibility on those who have decided to withdraw assessment and treatment.
• Clinical concerns
• Members have voiced concerns regarding the clinical coherence of the new position adopted by NHS Tayside and specifically:
• The decisions appear to conflict with national guidance (NICE, SIGN) and yet no clinical rationale for deviating from national guidance has thus far been given.
• The exclusivity of ‘complexity’ rather than ‘symptom severity’ when determining assessment and treatment priorities.
• The absence of any consideration of ‘symptom treatability’, current functional impairment, or improvement to ‘quality of life’ when assessments are prioritised.
• The denial of treatment to treatable patients experiencing serious functional and psychological impairment.
• The inevitable creation of a ‘two-tier’ health system whereby those who can afford private diagnosis and treatment will experience significantly superior long-term outcomes where those who are financially disadvantaged will not. This appears to conflict with the founding aims of the NHS and the stated aims of both the UK and Scottish Governments.
• The apparent absence of any consultation with the Royal College of Psychiatrists, Royal College of GPs, or any other national organisation representing the clinical professions. The decisions appear to be managerial rather than based on clinical advice, and appear to conflict with the functional aims of the NHS.
• Until the latest announcements, treatment was provided to those who CAMHS determined required it. If the assessment pathway is removed altogether, the position of NHS Tayside appears to be that individuals who require treatment will not get it.
• The absence of any impact assessment on this vulnerable population group raises serious concerns that those taking the decisions have failed to appreciate the multiple benefits of diagnosis and treatment or to permit the views of patients to inform decision making.
• There appears to be no empirical data to suggest that the removal of an assessment pathway and treatment options will lead to any net benefit to the patient population whereas multiple studies have indicated that the early identification and treatment of ADHD is essential in order to avert serious long-term outcomes.

The Scottish ADHD Coalition requests that NHS Tayside reviews its decision to restrict access to ADHD and other neurodevelopmental conditions for the reasons given above.

Yours sincerely,

Bill Colley

Chair of the Scottish ADHD Coalition

Lorna Redford

Trustee of the Scottish ADHD Coalition

Alison Zerouk

Treasurer of the Scottish ADHD Coalition

OFFICIAL STATEMENT BY THE SCOTTISH ADHD COALITION

The Coalition recognises that the recent Panorama documentary has caused considerable concerns to many members of our community.

We congratulate the documentary team in bringing to the attention of the wider public the paucity of services within the NHS for the assessment, diagnosis, and treatment of this complex condition, and the fact that many who suffer from its impact are forced to seek private services.

We know also that highly qualified clinicians are as concerned as patients and that efforts are being made to persuade NHS managers that more needs to be done to modernise patient pathways for assessment, treatment, and post-diagnostic support.

We have concerns that the programme may have mis-represented both the motives of patients for seeking support and the quality of assessments offered by the private sector and believe that clinical professionals should be judged not by journalists but by their own regulatory bodies and according to the standards laid out in national practice guidelines.

ADHD in the adult population is vastly under-recognised and under-treated at a huge cost to the individuals concerned, their families, and to society as a whole.

Intelligent, well-informed debate about how to progress intervention and support is to be welcomed, but programme-makers should be aware of the unintentional consequences of making blanket statements about clinical services in either the public or private sectors  and the potential damage that may be caused to innocent and well-motivated professionals who are driven to fill gaps in provision rather than seek to profit from failings elsewhere.

We urge the BBC to consider carefully in future how it chooses to portray the myriad of issues that ADHD raises, and to ensure that an appropriate balance has been struck in raising what may be justifiable concerns with the principles of journalistic integrity and natural justice to those affected.

At last week’s Royal College of Psychiatrists CAMHS Faculty Conference held in Glasgow, Geraldine Mynors, Chair of the Scottish ADHD Coalition, chaired a ‘Harkness table’ debate.  The participants were four young people with experience of Scotland’s mental health services:

• Charlie MacKenzie-Nash, Volunteer Faculty Service User representative for the Royal College of Psychiatrists.
• Ross Pollard, a social researcher currently working with Adopt an Intern to help get people with disbilites into work
• Alex Lightbody, a student nurse
• Kareen Stewart, a care-experienced Ambassador on the Communities that Care project in Renfrewshire, for Who Cares Scotland.

The debaters chose and took on the challenging question:

‘How can we ensure that CAMHS services are available to those in the greatest need, and not flooded by the tidal wave of mental health difficulties experienced by young people today?’

The wide ranging debate was enthusiastically received by the audience of psychiatrists and other mental health professionals from across the UK.  Some of the points where there was consensus were:

• The statistics on the increase in young people reporting mental ill-health and referrals to CAMHS speak for themselves – but it is unclear how much this is due to a welcome reduction in stigma about speaking out about it.
• More work is needed to understand the role that social media and smartphone addiction have in exacerbating mental health problems – and how much these can also help.   Austerity is also likely to be linked to mental distress amongst young people.
• CAMHS services are under-resourced and clearly need more funding to prevent a much bigger bill in the adult mental health system and society at large.
• However, besides more resources, CAMHS services need to look at how they organise themselves and target their services. The criteria for accepting or rejecting referrals at the moment often seem arbitrary and need to be more rational – with more information about children referred gathered up front.   Too many children have to repeat their story over and over again, and come up against staff who are ‘patronising’ and – in particular  – seem to find it hard to relate to adolescents.  Separate services for teens and young adults could help – possibly offering more group consultations and other age-appropriate interventions.
• Diagnoses and ‘labels’ can sometimes be profoundly unhelpful to young people and only add to their stress and anxiety.  Words like ‘borderline personality disorder’ can carry real stigma. On the other hand, the young people with ADHD in the conference felt that a much earlier diagnosis would have helped them avoid other mental health problems down the line.
• Mental health prevention needs a much greater emphasis – along with first line services which GPs can refer to (like school counsellors) before problems get out of hand.  School is the place where most young people can be reached, but shouldn’t be the only setting for prevention work – youth workers and other youth activities play a huge role too.

The Scottish ADHD Coalition was proud to have been involved in this event, and impressed with the huge insight and courage shown by the young people involved in order to highlight the  ways in which CAMHS services need to rise to today’s challenges.

The debating team worked with Debating Mental Health to prepare for the debate.  The Conference was chaired by Professor Helen Minnis of the University of Glasgow.

New data obtained by the BBC shows a concerning rise in antidepressant prescribing for children in Scotland. In this comment we highlight that undiagnosed ADHD and ASD can be one thing which gives rise to mental health problems in young people.

As well as treatment for anxiety and depression, much could be achieved if young people were able to engage more with the Outdoors, the arts, exercise and purpose – and if parents were better supported.   All things we plan to work on in the future.

BBC Reporting Scotland news 24th July 2017

The Press and Journal yesterday reported on the policy of NHS Grampian towards adult ADHD

Download the full article here.

Press and Journal article 5 6 18

UPDATE – 6th June 2018

Minister to order NHS Grampian to end ADHD treatment ban

A new ADHD Support Group for both parents and adults has just been launched in Fife and will have input from Fife CAMHS and the Coalition.

Big well done to Andi Paddon for getting it off the ground.

Join their Facebook group via https://www.facebook.com/groups/246719372752812/

The Salvesen Mindroom Centre Research Centre team at the University of Edinburgh would like to say thank you to everyone from the Glasgow ADHD groups that volunteered to help us pilot our new study looking at learning in children with ADHD. Now this pilot study has been completed we are starting the official recruitment stage of the project.

This study is looking at the relationship between how children with ADHD remember things and pay attention and how they do in maths and literacy including reading, spelling and writing. There is a suggestion in research that memory and attention may be linked to how children with ADHD learn these subjects. We are looking to improve our understanding of this and to tackle the difficulties many of these children face in their learning.

In this next phase of the project we are looking to recruit around 120 children aged 6-12 years referred to Child and Adolescent Mental Health Services (CAMHS), focusing on the North CAMHS team in Edinburgh. We also hope to extend this study to other CAMHS teams in the very near future.