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
