ADHD UK has threatened legal action against an NHS organisation over its decision to impose a minimum two-year wait for attention deficit hyperactivity disorder and autism assessments.
In a legal letter to West Yorkshire NHS integrated care board (ICB), seen by the Guardian, the charity alleges that the decision to force patients to wait at least two years for such assessments was unlawful and says it will seek a judicial review if the board fails to reverse the policy.
West Yorkshire ICB introduced the two-year minimum wait this year, affecting thousands of people with possible ADHD or autism in Leeds, Bradford, Kirklees, Calderdale and Wakefield.
West Yorkshire is not the only ICB to ration access to assessment for neurodiversity. The Guardian revealed last week that it was one of four – alongside Devon, Somerset, and North East and North Cumbria – to have imposed minimum waits amid spiralling costs due to the volume of assessments being sought. A further ۱۱ have introduced other mechanisms to ration the number of assessments.
ADHD UK claims West Yorkshire failed to follow correct procedures, alleging the ICB breached equalities legislation, denied patients their legal right to choose non-NHS care, failed to involve patients, carers or the public in the decision, and that the decision ran counter to NHS contract regulations.
Henry Shelford, the chief executive of ADHD UK, said: “We have sent formal notice warning West Yorkshire that we are prepared to go to court unless it scraps that rule. We believe locking patients out of NHS choice is illegal because it breaches patients’ legal right to choose where they receive NHS care.
“We believe the processes they’ve strung together to push this through have been used incorrectly and, in some cases, improperly.”
The charity’s legal “letter before claim” to West Yorkshire ICB states: “There is no published decision record, equality impact assessment, public involvement, demand and capacity analysis, clinical safety assessment or statement of reasons specific to the two-year minimum.”
It says that unless West Yorkshire withdraws or suspends the two-year minimum, to retake any decision lawfully and to provide the information and documents that will allow the issues to be narrowed or resolved without proceedings, ADHD UK will seek a judicial review.
The disclosure comes ahead of a government-commissioned review of mental health, ADHD and autism prevalence led by Prof Peter Fonagy. The review is expected to recommend a “needs-based” system whereby patients with ADHD symptoms should not automatically be formally diagnosed but should be “triaged” and offered support without requiring a formal diagnosis. It is also expected to propose greater regulation of private psychiatry clinics.
Corinne Hunter, the chief executive of Stripes, a charity supporting children and adults with ADHD in West Yorkshire, said the ICB’s decision was devastating for patients and that the board had not let the charity know it planned to impose a minimum wait.
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She said: “We weren’t consulted or told in advance about the decision – we initially heard about it through word of mouth from our own service users. There are ‘right to choose’ providers that are able to offer assessments much sooner, so for people in West Yorkshire to now face a minimum two-year wait is devastating.
“People often put off seeking an ADHD assessment for years, until they reach the point where they are really struggling to cope. Getting referred can finally feel like there is some light at the end of the tunnel, only to then be told that light could be another two years away.”
A spokesperson for NHS West Yorkshire ICB said: “We have received correspondence from ADHD UK. As this matter may be subject to legal proceedings, it would not be appropriate to comment further at this stage.”
