Campaigners plan legal action over NHS policy preventing access to autism and ADHD assessments
York Disability Rights Forum say the policy is unfair, unrealistic and denies patients a potentially life-saving diagnosis.
Campaigners in York and North Yorkshire are planning legal action over an NHS decision which refuses adult referrals to autism and ADHD assessments.
The disabled-led York Disability Rights Forum (YDRF) has secured legal advice about launching a judicial review to challenge the controversial decision which it says amounts to systemic exclusion.
The Humber and North Yorkshire Health and Care Partnership has denied the pilot policy, which has been rolled out across York and North Yorkshire, is a money saving measure, instead describing it as a way to “stem the flow” of referrals previously reported to have reached into the thousands.
Hilary Conroy, from YDRF, said: “For many of the neurodivergent people we represent, diagnosis has completely transformed, and even saved, their lives.
“We’re seeking legal support as a last resort; we don’t take this action lightly. 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.”
Under the pilot scheme – which was rolled out suddenly and without proper consultation – all but those facing immediate and life threatening health or family breakdown issues are being refused referrals. Initially due to end on June 27, the trial has since been extended for a further nine months, a decision understood to have been made without consultation.
In what is believed to be one of the first of such challenges in England for adults, YDRF has launched a crowdfunding bid for the early stages of their legal challenge, with the aim of raising £5,000 to £10,000 to fund legal advice.
The group warned the scheme was likely to be replicated in other areas, as the neurodivergent community struggles to access NHS care.
Cat Owens, a national ADHD activist said: “We are seeing similar schemes across the UK. In some areas vulnerable people are facing eight year waits for assessment, while other areas have no services at all. We have a right to assessment and support; our community should not have to pay to access it.
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.”
YDRF cautioned that the absence of autism and ADHD assessments was resulting in misdiagnosis of neurodivergent people which can lead to a person either receiving no support, or the wrong kind of support, with negative consequences for their quality of life.
“We cannot allow our NHS to refuse to diagnose autism and ADHD, while they continue to misdiagnose our neurodivergent community with borderline/emotionally unstable personality disorder, schizophrenia and bipolar disorder.
“We know that this case will be important to inspire other groups across the country in their own fights and we encourage everyone to join us in solidarity and stop the spread of this systemic exclusion to other areas.”
The Vale of York and North Yorkshire CCG websites state that their ambition is for “more timely adult ADHD and autism diagnoses”. However, YDRF said this update was made quietly, without transparency about criteria or involving stakeholders. They said the ‘tailored support’ referred to is generic guidance provided by an online survey which is being used to divert people out of the diagnostic pathway.
Emily Douse, from Healthwatch York, said they had already received distressing feedback about the impact of the pilot.
She said “In response to public concern we volunteered to do an independent review of the pilot. Our findings highlight some unanswered questions regarding how decisions have been made and how the pilot was implemented.
“We’ve heard some distressing examples of how the pathway has impacted those seeking a diagnosis, and the wider community.
“We’re yet to receive the data from the integrated care board and ask that people continue to share their feedback. Only then can informed decisions be made about how best to serve the neurodivergent community.”
If you or someone you know has been affected by the issues raised, YDRF can support you, please contact them via email: ND@YDRF.org.uk or telephone 01904 326781.
CASE STUDY 1 – CARLA
Carla Morris, 33, from York, was diagnosed with ADHD by the NHS two years ago after many years of misdiagnosis. She has since been able to access life-saving treatment and medication.
My life started when I was diagnosed. Learning about the condition I’d lived with my whole life wasn’t just a lightbulb moment for me, it was my own personal Big Bang. Symptoms I’d never even heard about, suddenly named facets of my life I thought were simply my own failings.
As a child I approached secondary school with a passion and enthusiasm for the things I found interesting, but this always seemed to be cancelled out by a complete lack of organisation and focus. I couldn’t keep track of homework, deadlines, equipment, what to complete when. I felt like I was pushing my way through a dense fog whilst everyone else just strolled by. Every school report spoke of my ‘wasted potential’ and by the end of my time at school, I’d been under CAMHS (Child and Adolescent Mental Health Services) for two years after multiple self-harming and suicidal episodes.
After school I dropped out of college and university. I lost jobs and I drank habitually for years, chasing dopamine highs on the weekend to escape the reality of ‘wasted potential’ still haunting me throughout my 20s. I’d had countless assessments, evaluations, therapies, mental health teams, medication changes throughout the years but the diagnoses never quite made sense and the redundant antipsychotics and antidepressants brought challenging side effects. I desperately wanted to ‘get better’ – but how can you get better if you don’t understand your own brain?
When at 31, a year after a referral from my York GP, a psychiatrist confirmed that I had moderate to severe ADHD, my world shifted. I felt a deep mourning for the years I lost destroying myself and being destroyed by others for a brain disorder I was born with. Symptoms such as task paralysis, executive dysfunction, time blindness, emotional dysregulation, I’d heard as ‘lazy’, ‘stupid’, ‘crazy’, ‘selfish’. Things to snap out of. These are words that I, and most adults undiagnosed with ADHD, hear every day of our lives.
The diagnosis meant I was prescribed Concerta and with careful monitoring, we found the right dosage and gradually, things began to change.
I’m 33 now. I am unrecognisable. I have been in my current job for a year and already received a promotion. I’m becoming heavily involved in neurodiversity campaigning. I’m fixing all my health issues resulting from years of being unable to adequately take care of myself. I am confident in myself and my abilities. I have a way to go – I suffered, misdiagnosed, for a very long time – but I’m the happiest I’ve ever been, happier than I ever thought possible.
I’m telling my story because I know how essential a diagnosis can be and I am heartbroken for people who are not able to access this.
Diagnosis is not a luxury. It has allowed me to understand and accept who I am and why. Diagnosis gave me community. It gave me access to medication and a way to live in a world that I didn’t know existed. Diagnosis saved my life. That is why assessment is a right, not a luxury.
CASE STUDY 2 – HAZEL
Hazel Kerrison, 36, lives in York and was diagnosed with autism at 32 and ADHD at 34.
It was suggested that I might be autistic when I was six-years-old but for a multitude of reasons, I was well into my twenties when I looked into assessment.
It was a lengthy assessment process and by the end of it, to my surprise I was told that not only was I autistic but I potentially had ADHD.
I have had mental health issues for most of my life; as a child I felt anxious and had difficulty concentrating and by my late teens I was diagnosed with a mental illness. Although those diagnoses felt right, I had a nagging feeling that they didn’t tell the full story.
By my twenties many people suspected I was autistic. I was exhausted by a lifetime of trying and failing to fit in; of desperately trying to find where I sat in the world; of accidentally insulting people; of trying with all my might to be a functional person but never seeming to meet the mark. I had been branded as useless, lazy, spaced-out, awkward, and I was constantly told that if I just tried harder, if I just applied myself more, I could do X, Y, and Z. “Failure to achieve potential” was a phrase I was very familiar with.
On many levels I hated myself, I couldn’t understand why everything seemed so easy for others but so hard for me. Maybe I really was useless, lazy, and all those other labels people ascribed to me.
It wasn’t until I discovered that I was AuDHD – a term for someone who is both autistic and ADHD – that I started to unlearn these judgments. I became able to learn how to work with my brain and not against it, I was able to learn to ask for accommodations, to ask for support, to ask for what I need.
I am no longer ashamed to wear sunglasses indoors or to excuse myself from a busy situation. I will allow myself to stand up and move around in meetings rather than becoming overwhelmed and suffering physical pain because it is all I can do to concentrate on staying still. If I don’t understand a particular social interaction, I ask. I’m no longer ashamed to be me.
Before diagnosis I was regularly very harsh on myself, both self-harm and suicidal ideation were common occurrences. But now, although I may still not be quite the level of functional human being I want to be, I can understand my brain, myself, and my behaviours. I know that it’s not for lack of trying, it’s not because I’m an awful person – it’s because my brain literally works differently and that’s ok.
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. These are very vulnerable people and many have been pushed towards crisis in the last few months. Maybe the cruelest 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.
Assessment is a right, not a luxury.
CASE STUDY 3 – CAT
Cat Owens, 44, is a national ADHD campaigner who is supporting the York Disability Rights Forum’s campaign for access to assessment. She was diagnosed with ADHD last year and lives in Heaton in Newcastle.
I have always felt different, not quite sure of who I am or where I belong; I don’t think most people understand how much ADHD impacts every aspect of your life.
When I was younger ADHD wasn’t even considered in girls, especially girls like me who were driven by the fear of getting things wrong, of being thought naughty or not being enough – a common experience for girls and women with ADHD. It’s still hard to explain the intensely internal experience of hyperactivity – believe me, my brain never stops.
Even though things are starting to change, boys and men are still significantly more likely to be diagnosed with ADHD or autism than women or non-binary people.
Women and non-binary people are also more likely to be undiagnosed or misdiagnosed with other conditions. I was initially diagnosed with bipolar, which we are pretty sure now was a misdiagnosis. After 17 years of treatment with antipsychotics that I didn’t need, I couldn’t function enough to hold down a job. I even had to sign a form to say I wouldn’t have children because of the medication I should never have been on. I’ve been on mental health meds all my adult life but I took my last antidepressant last week. I am a different person now I understand my ADHD.
It has been eye-opening to piece together how many of my other physical health issues are related to neurodiversity. They include a condition called Ehlers-Danlos Syndrome, which means that I often dislocate.
I spent my younger years just about coping with school and other aspects of life until I was 18 and left home when things fell apart. I have multiple qualifications, including a first-class degree, and have been a professional disability campaigner and teacher, but things have fallen apart for me over and over again.
It took me nearly three years of false starts to get my diagnosis last year, including being told twice that I was on the NHS waiting list but, after waiting nearly two years, finding out that the referral was not sent. When the diagnosis finally came it changed everything; finding out more about how my brain works and campaigning with the community has led me to a place where I feel ready to work again – something I had accepted wouldn’t be possible.
It is amazing how many people that I have advocated for in our community have similar stories to tell. Currently, in York and North Yorkshire, people are facing huge obstacles. I am supporting someone who was told that she was on the waiting list to be assessed at the Retreat, a mental health hospital in York, however when she chased up the appointment, she found that her surgery had failed to refer her.
She said: “I was told I had been referred for an ADHD assessment almost two years ago. I was aware the wait was a long one so didn’t think much of it but when I called to chase it up I was told my referral had never been done. I have had five months of arguing back and forth with my GP as I now fall into the new pilot which means I am not eligible for an assessment. I have been gaslit and told it’s not ADHD it’s the fact I am a new mum and I am therefore struggling with ‘mental health issues.’ I know I have ADHD and need a diagnosis to further help me understand myself and be able to give my daughter the best version of myself.”
So many people have deeply frustrating, unfair stories like these. They are the reason that I will never stop fighting to ensure that every adult who needs an assessment can access one. I hope that the NHS managers will change their minds about the new rules without it having to go to court. That really is the last resort. I don’t think the people behind the pilot can have thought about the real human impact of their decisions. We have tried everything else we can to show how the pilot is affecting people.
Diagnosis gave me a new life: that’s why assessment is a right, not a luxury.