NHS ADHD Treatment: Tragedy and the Right to Choose
- When Leigh White remembers her brother Ryan, she thinks of a boy of exceptional ability who "won five scholarships at 11" including a coveted place at Bancroft's, a...
- A report written after his death acknowledged significant shortcomings in the support he received while seeking help for attention deficit hyperactivity disorder.
- Like many people the Guardian spoke to, he followed the "right to choose" pathway, whereby patients can pick a private provider anywhere in the country for assessment, diagnosis...
When Leigh White remembers her brother Ryan, she thinks of a boy of exceptional ability who “won five scholarships at 11” including a coveted place at Bancroft’s, a private school in London. He was, she said, “super bright, witty, personable, generous adn kind”.
Ryan killed himself on 12 May 2024. A report written after his death acknowledged significant shortcomings in the support he received while seeking help for attention deficit hyperactivity disorder.
Like many people the Guardian spoke to, he followed the “right to choose” pathway, whereby patients can pick a private provider anywhere in the country for assessment, diagnosis and initial treatment. They then ask their GP to enter a shared-care agreement for prescriptions and monitoring. However, Ryan struggled to get the two services to link up.
The problem lies in the fact that shared care is voluntary and not all GPs agree to it. Some patients told the Guardian their doctor had rejected their private diagnosis on the grounds that it did not meet their standards.This was even after the NHS had paid for it – and despite there being no official rules for private providers to follow. Some, like Ryan, end up stuck in administrative limbo.
Ryan White with leigh,who said her brother was ‘super bright,witty,personable,generous and kind’
ryan experienced tragedies that affected his mental health. His father and a sister died when he was young and, in 2019, he found his mother dead, a loss from which Leigh said “he never recovered”.
He was treated for bipolar disorder but it became apparent to Ryan that he had been misdiagnosed. Seeking clarity, he was referred by his GP for an ADHD assessment with Psychiatry UK, a private provider, in September 2022. It took five months for him to be assessed and diagnosed, but because of his bipolar history a community mental health review was needed before medication could begin. “nobody chased anything,or took responsibility,” Leigh said.
In June 2023, Ryan’s housing situation became unstable, triggering acute distress and rapid decline. He was deregistered by his GP practice after he expressed frustration at the delay in getting him help. He sent messages to Psychiatry UK explaining he did not know where to turn, one of which went unanswered.
By early 2024, Ryan was still without a GP, and was tired, isolated and increasingly unwell. On 18 June 2024, a Psychiatry UK staff member messaged Ryan to say his medic
Neurodevelopmental Assessment Regulation in the UK
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The UK faces increasing scrutiny regarding the qualifications required for professionals conducting neurodevelopmental assessments, especially for conditions like ADHD and autism, with concerns raised about variable assessment quality and potential pressure to reduce costs. This has led to calls for greater clarity in defining “appropriately qualified healthcare professionals” and ensuring consistent standards across both NHS and private providers.
Current Regulatory Landscape and Concerns
Currently, there isn’t a single, legally defined standard for who can conduct neurodevelopmental assessments in the UK. This ambiguity allows individuals with varying levels of training and experience to offer these services. The lack of consistent regulation has fueled concerns about the thoroughness and accuracy of assessments, possibly impacting diagnosis and treatment pathways.
According to Dr. Sarah Craig, a consultant paediatrician, greater clarity on required training and regulation would bolster public confidence in the rigor of neurodevelopmental assessments. She highlighted this need in a statement to the The Guardian on November 26, 2023.
Pressure on Private Providers and Assessment Quality
The national Health Service (NHS) is facing significant demand for neurodevelopmental assessments,leading to long waiting lists.This demand has driven some patients to seek private assessments. Though, Andrew Jay, director at north East ADHD, reports pressure from the NHS to lower prices for private assessments.
this price pressure, Jay explains, can lead private providers to offer a “very basic level of care” and place “pressure on clinicians to be brief and write reports which might not reflect the depth of assessment carried out.” He made these observations in the same The Guardian article from November 26,2023.
Impact of Variable Standards
The variability in assessment standards can have significant consequences for individuals seeking diagnosis and support.Inconsistent assessments may result in misdiagnosis, delayed access to appropriate treatment, and increased anxiety for patients and families.
Professor Adamou, speaking to the Health and Social Care committee’s report on ADHD and Autism (published February 29, 2024), noted the challenges arising from differing levels of expertise among assessors.
Calls for Increased Oversight
Several organizations and professionals are advocating for increased oversight and regulation of neurodevelopmental assessments. Proposed solutions include establishing a national register of qualified assessors, developing standardized training programs, and implementing quality assurance mechanisms.
The Health and Social Care Committee report specifically recommends that NHS England and the Department of Health and Social Care work with professional bodies to define the core competencies required for those undertaking neurodevelopmental assessments. The report was published on February 29, 2024.