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ADHD and autism campaigners plan legal action against NHS over referral limits

NHS chiefs in North Yorkshire placed limits on which adults can get referrals for autism and ADHD.

The campaigners (l-r) Hilary Conroy, Cat Owens, Hazel Kerrison are taking legal action. Image: York Disability Rights Forum.

Campaigners are planning to launch legal action after NHS chiefs in North Yorkshire placed limits on which adults can get referrals for autism and attention deficit hyperactivity disorder (ADHD) assessments.

North Yorkshire and York Health and Care Partnerships introduced a pilot programme in March in which adults seeking an NHS assessment for autism or ADHD are triaged via an online screening tool.

NHS chiefs say this screening process prioritises those with the most severe needs, rather than processing referrals in chronological order.

These priority needs reportedly include the patient being at risk of immediate self-harm or harming others, at risk of being unable to have lifesaving hospital treatment or care placement, or an imminent risk of family court decisions being determined on diagnosis.

Those who do not meet the criteria are given guidance and signposted to other support networks.

But campaigners say that in practise that means that most people cannot get a referral for an assessment – GPs can no longer make referrals themselves.

And now activists are launching a crowdfunder to raise £5,000-10,000 for the early stages of a legal challenge to the pilot, amid fears it could create a blueprint for NHS bodies in other parts of the country trying to grapple with a nationwide crisis in mental health services.

Earlier this year NHS managers in the south west of England backed down on similar proposals in the face of a planned legal challenge.

The disabled-led York Disability Rights Forum (YDRF) has secured legal advice about a judicial review. “We’re seeking legal support as a last resort; we don’t take this action lightly,” said Hilary Conroy of YDRF. “NHS leaders have ignored or dismissed our every attempt to communicate with them to highlight the community’s concerns relating to the decisions they have made.

“Denying people access to appropriate assessment and treatment is not acceptable. We will continue to champion the voices of the neurodivergent community and will not give up on them. Assessment is a right, not a luxury.”

“What we think is happening is that only the people that have the most severe needs can join the waiting list,” said ADHD campaigner Cat Owens. “The people that are being screened are the people that would normally have been referred by the GP. So the vast majority of the people who are being screened are not going to be put on the waiting list under the pilot.

“There are a lot of undiagnosed people who need access to assessment, especially because of the historical underdiagnosis of girls and women. We understand there are systemic pressures but the solution should be found by working with the community. Refusing to flat out refusing to assess people is unacceptable.”

North Yorkshire and York Health and Care Partnerships say the pilot is needed in order to manage surging demand and bring down lengthy waiting times.

But critics suspect the move is a money-saving exercise, which NHS chiefs deny.

“They’re saying the level of need has gone up, but that’s not actually the case,” said Owens. “They cannot meet the needs because they have not allocated the funds.”

Hazel Kerrison, who lives in York, was diagnosed with autism and ADHD in the last five years. “I do a lot of peer support with other people who are potentially neurodivergent and I have seen first-hand how this pilot has impacted them,” she said. “These are very vulnerable people and many have been pushed towards crisis in the last few months.

“Maybe the cruellest thing about this is that they are too disempowered to fight this themselves, many have been unable to even return to their GP due to the effects of all this. And that’s part of why I’m fighting for access to assessment: I already knew this pilot was wrong on a moral level and I had suspicions of the harm it could cause, but now I’ve witnessed the effects on people who can’t fight for themselves, I’m motivated to fight on their behalf.”

The screening tool takes the form of an online questionnaire, called the ‘Do It Profiler’, which GPs provide links to when people request an assessment. Owens said the questionnaire, which is completed at home, asks vague generic questions and takes about 40 minutes.

“People have filled it out and they’ve been told straight away whether they’ve met the criteria or not,” said Owens. “But most people that we’ve talked to aren’t clear about whether they’ve actually been referred or not.”

The pilot has lacked transparency. The questionnaire cannot be accessed without a link. It is not clear if anyone has been added to the waiting list for autism and ADHD assessments since the pilot launched – Freedom of Information requests have been refused on the grounds that the information is not held.

“Just everywhere you look, more and more people seem to be involved and no-one seems to know what’s going on,” said Owens.

Tim Nicholls, head of influencing and research at the National Autistic Society, said: “We are incredibly concerned about anything that makes it harder to get an autism assessment. Changing the criteria for referral will not make the problem of long waits disappear, it just increases uncertainty and stress for autistic people and their families. Only funding a system with enough capacity to carry out high quality assessments will do that. We’re worried that these isolated instances could be a sign of what’s to come.”

The Big Issue has approached North Yorkshire and York Health and Care Partnerships for comment.

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