One person and a nurse/doctor speaking in a hospital

Autism and ADHD patients struggle as NHS diagnosis waiting lists keep getting longer

NHS waiting lists to get an autism assessment and attention deficit hyperactivity disorder (ADHD) diagnosis continue to extend, causing increasingly serious difficulties for those waiting.

NHS data published last month shows there were 11,425 patients with an open referral for suspected autism in September in London, and that 6,800 (60%) of them had had a referral open at least 13 weeks without being offered a first appointment.

National Institute for Health and Care Excellence (NICE) guidance states no one should have to wait more than three months for a first consultation.

This came only a few weeks after Prime Minister Rishi Sunak scrapped the awaited Mental Health Bill from the legislative agenda, despite thousands of autistic people and people with learning disabilities being stuck in inpatient mental health hospitals in England waiting for better legal protection of their condition.

Mental health and wellbeing training director Hayley Broughton-McKinna, 29, was diagnosed with combined severe ADHD in the past year.

She said: “When you try to get a diagnosis through the GP, through the NHS, you’re immediately made aware of the fact that there are significant waits.

“I was told I would have to wait at least two years for an ADHD assessment.

“So you have to be motivated to even consider going through the process, and part of the challenge is actually to go through the process.

“It requires an awful lot of ability to plan and to organise yourself, to remember to do things and to go through very lengthy forms for example, which is tedious and really difficult to do if you’re neurodivergent.”

Being diagnosed as being on the spectrum or having a neurodivergence is crucial as it enables people to understand their condition, be able to talk about it, get guidance, advice and support from the NHS, charities and professionals, as well as to obtain legal protection.

London-based National Autistic Society policy and public affairs manager Joey Nettleton-Burrows said: “If they don’t have a diagnosis then people on the spectrum can’t fully know whether they have a condition and therefore can’t fully talk about it to people around them nor seek for support.

“It means they’re missing out on sometimes necessary support and they can end up developing mental health problems which, in some cases, leads them to go to mental health hospitals.”

London-based ADHD UK CEO Henry Shelford added: “ADHD impacts every aspect of your life whether it’s your work, relationships or mental health, and the impact of having to wait for so long for a diagnosis can be terrible.”

recent study found that adults with ADHD are five times more likely to try to take their own life than those without ADHD (14% vs 2.7%) and Shelford claimed it is partly due to lengthening NHS diagnosis waiting lists.

Broughton-McKinna said: “Having to wait for so long without knowing can increase your anxiety and your stress which can make everything else more difficult particularly if you’re neurodivergent.

“Even things like sleeping, eating and staying hydrated can become challenges.

“And it’s difficult because you’re constantly thinking ‘I don’t know how long I’m going to be doing this because of the wait’, ‘I don’t know what’s going to be at the end of it other than some sort of confirmation’.”

Like many others who were told they would have to wait for a while before having a first appointment, Broughton-McKinna chose the private route and was told she would only have to wait about six weeks to see someone. 

She said: “When I went private and saw that you could fill in all the paperwork at the same time and digitally I just thought it would be so much easier.

“It felt like you’re having an awful lot more control over the process which just by its nature can help reduce the anxiety surrounding that process.”

Autism and ADHD charities said there should be more awareness and knowledge of what being on the spectrum or neurodivergent entails, so workplaces and schools can support people better while they wait for a diagnosis.

Shelford said initiatives like ‘Right to Choose’, which enables to find other mental healthcare providers, should be more promoted by NHS England as alternatives to lengthy diagnosis waiting lists.

Visit charities like the National Autistic Society and ADHD UK for more information on what being on the spectrum and/or neurodivergent entails and what support can be sought.

An NHS England spokesperson said: “Over the past three years, we have seen a significant increase in demand for both ADHD diagnosis and autism assessment in London.

“This has led to longer waiting times for NHS services in some areas, which we’re working hard to reduce. Additionally, we are committed to our ongoing work to offer support for people while they wait.

“Patients based in England under the NHS may be able to access treatment from an alternative mental healthcare provider if they have an NHS contract. The best person to talk to about this is your GP.” 

Featured image credit: DCStudio via Freepik

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