Cat Owens: Why are neurodivergent people refused access to NHS support?
There has been a lot in the media lately about neurodiversity, including debate around access to diagnosis and medication. Many believe that you don’t need an assessment in order to understand yourself. Others argue that diagnosis should not be necessary for people to access the support they need.
As a disability rights campaigner, I believe that society poses the biggest barriers to our community; attitudes towards us and the world around us are disabling. That said, I am pragmatic and the reality is that for reasonable adjustments in education, work, social care, or access to benefits, diagnosis is increasingly important. Clinical assessment is also vital to access ADHD medication, which can dramatically improve people’s quality of life and outcomes.
On a personal level, my ADHD diagnosis at the age of 43 changed everything. Finding out about how my brain works and beginning treatment has quite simply given me a new life. I was initially misdiagnosed with bipolar disorder and 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 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 month. I am a different person now I understand my ADHD.
As a result, I feel very strongly that giving people the opportunity to access timely assessment and support is crucial. We must have the right to meaningful choice but the opposite is happening across the UK, as neurodivergent people find it increasingly difficult to access support. Adult ADHD and autism assessments are effectively banned in some areas.
Earlier this year a pilot scheme in York and North Yorkshire was implemented suddenly without proper consultation. Under the pilot, referrals are refused unless people can prove they are facing immediate and life-threatening health issues or family breakdown. The trial was due to end on June 27 but has since been extended for a further nine months, once again without consultation.
The local NHS has denied it’s a money saving measure, describing it as a way to “stem the flow” of ADHD and autism referrals. After decades of under or misdiagnosis more people do need access to assessment, we know this, but this kind of scheme is not the answer.
Waiting until people are in crisis to refer is as brutal as it is illogical. A referral doesn’t mean help. The best outcome from a referral is joining a waiting list that will run into years and by the time assessment is offered it may be too late. More than three in ten autistic adults have attempted suicide and adults with ADHD are five times more likely than their neurotypical peers to do so, rising to one in four women.
You can’t underestimate the human impact of policies that restrict access to assessment. My friend Hazel describes their first-hand experience of working with “extremely vulnerable people… pushed towards crisis in the last few months.” They told me that “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.”
Unless we stand together against them, policies like the one in York and North Yorkshire are going to drive more people to crisis point and pile pressure on other areas of our overstretched NHS. That is why the York Disability Rights Forum (YDRF) has secured crowdfunded legal advice about launching a judicial review to challenge the pilot.
Expressing their deep concern, the National Autistic Society has rightly warned that this kind of system could be “a sign of what’s to come” for our community. I agree — we are seeing similar schemes across the country; in some areas people in crisis face eight-year waits for assessment, while other areas have no services at all.
We all have a right to assessment and support; is our community less deserving of support than other people? As we map what is happening across the UK it certainly feels like we are being excluded from NHS provision. At the same time, private diagnoses are beginning to be dismissed, taking away that option from the few who can afford it.
I am supporting someone in North Yorkshire, she said: “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 stories like these, which is why we are asking our community to share what assessment means to them as part of our #AccessDeniedND campaign. The people behind the stories are the reason I will never stop fighting to ensure that every adult who needs an assessment can access one. Assessment is a right but we are being made to feel that it is a luxury. For many people, it is quite literally something they can’t live without.
After nearly four months of fighting, it looks like the decision-makers in York and North Yorkshire are not going to back down without it having to go to court. I hope that is dawning on them that we won’t back down either. We ask that you stand in solidarity with us, the neurodivergent community in the UK, as we stand up for our rights.
Cat Owens is a national ADHD campaigner currently challenging an NHS decision to stop adult autism and ADHD assessment referrals in Yorkshire. You can support the #AccessDeniedND crowdfunder here.
