Lack of ownership within NHSE for struggling service is ‘complete failure of leadership’

Despite soaring demand for assessments and widespread drug shortages recently triggering a national patient safety alert, responsibility for attention-deficit/hyperactivity disorder services does not sit within any NHS England directorate.

HSJ is aware of high-level concerns within NHSE about the lack of a specific programme for ADHD and neurodiversity services as the problems continue to grow.

HSJ understands that none of NHSE’s mental health, learning disability, or autism programmes have been given any resources for ADHD. It is also claimed that the medical and long-term conditions teams “are not very interested” in taking responsibility, and “assumed someone else was doing it”.

A senior source, very close to the issue, told HSJ that no NHS senior director had taken “ownership” of the issue, and there was a widespread misapprehension that responsibility for ADHD services was part of the autism remit given to the mental health directorate. 

“We haven’t got the attention we need around ADHD,” said the source, “we need a [dedicated] neurodiversity programme.”

The medication shortages which have arisen from “excessive increases in demand”, have led to the formation of an ad-hoc group within NHSE with staff drawn from several directorates. This has been taking an incident-style response to the shortages. 

It is hoped that a similar group will be set up in the coming weeks to tackle other issues impacting ADHD services more generally, such as funding and staffing.

‘Poorly structured’ response to problems – charity

Henry Shelford, CEO of the charity ADHD UK, said it came as no surprise to hear that ADHD is “being managed in a poorly structured/ad-hoc way” at a national level.

He added: “With the ADHD medication crisis we’ve seen a complete failure of leadership and have instead had a poorly constructed response that failed to provide resources to GPs or trusts that are needed in this crisis, and failed to identify, and have a system for, those most in need of medication.”

Excessive increases in demand have prompted a global shortage of three types of medications used to treat ADHD symptoms: methylphenidate, lisdexamfetamine, and guanfacine.

Following September’s safety alert, doctors were told to not give new patients a prescription for any of the affected drugs until shortages are resolved. Medics were also asked to check current patients’ supply.

Meanwhile, integrated care systems, mental health, and community trusts continue to report substantial waiting times for ADHD assessment services.

Adults in one rural ICS are facing waits of up to a decade, while system-level data compiled by ADHD UK suggests waiting times for children vary from five weeks to five years.

Getting a diagnosis is key to unlocking care packages such as speech and language therapy, counselling, or support for special educational needs.

Mr Shelford added: “The failure of leadership at the top has resulted in integrated care boards [being] unsupported on how to deal with increased ADHD demand… and means we have no agreed ADHD assessment within the NHS.”

NHSE recently published a new autism assessment framework to aid commissioning decisions, but this did not explicitly mention ADHD assessments. 

An NHS spokesperson said: “NHS staff across the country are working hard to ensure all patients requiring assessments and further support from ADHD services are seen as promptly as possible. People with ADHD may require the support of a range of health services – including paediatrics and adult or children’s mental health – with care and treatment being delivered through primary or secondary care services, dependent on the individual’s needs.   

“The current shortages of certain medicines used to treat ADHD remain a cause for concern and we are working closely with the Department of Health and Social Care, which is responsible for medicines supply, to help minimise the impact for patients.”