Raising awareness of neurodiversity

Can you please tell us a little bit about yourself?

"My name is Darren, and I am 43 years of age. I’m originally from Sussex and moved to Dorset about 18 years ago. 

I’m an active outdoor lover, and in my spare time I do a lot of hiking and climbing with my dog." 

Can you tell us a little bit about the difficulties and barriers that you’ve experienced when trying to access health and social care?

"Three years ago, I was misdiagnosed with anxiety and depression by my GP. I questioned the diagnosis, and despite my reservations, I took the prescribed medication and completed 10 sessions with Steps 2 Wellbeing, neither of which had any effect. It was only through self-funded private counselling that I was told I had ADHD (attention deficit hyperactivity disorder - which is a condition where the brain works differently to most people. If you have ADHD, you may have trouble with things like concentrating and sitting still). 

I then went back to my GP to ask if I could get a diagnosis through the NHS, but was told there was a four-year waiting list. I then paid for a private diagnosis and titration (the process of adjusting a medication's dosage to find the most effective amount). The medication was life-changing, and that year, I completed three ultramarathons. However, the stability was short-lived because my psychiatrist left the practice, and because I was still in titration, my GP refused a ‘Shared Care Agreement’.

I asked my GP if I could go opt for ‘Right to Choose’, but my GP was unfamiliar with this, which lead to further delays. The second clinic I was referred to just vanished and I later learned via the Care Quality Commission (CQC) that the psychiatrist had been struck off. 

Throughout this, I was "pushed from pillar to post.” I was offered crisis numbers, despite this not being a mental health issue, and was left without support.

After a long battle, my GP agreed to ‘shared care’, and I am currently, on my third attempt at titration with a new provider. This process has wasted three years and significant NHS resources. Furthermore, the original, incorrect diagnosis of anxiety and depression remains on my record, and this misdiagnosis has caused the rejection of my application to the Army Reserve (formerly TA). Because the GP refuses to rectify this error, I have now passed the age eligibility bracket, so I can no longer join. 

The system is fundamentally broken, and it desperately needs to change."

Are there any particular services that have worked well for you?

"Healthwatch Dorset have been very good, you’ve listened carefully to my case and helped to bring it to attention. 

Although the current ‘Right to Choose’ system is concerning, in many ways, it has the potential to be a very effective model. I have spoken to many ‘Right to Choose’ providers across the country, and there are examples of good practice. Psychiatry UK, deliver high quality assessments and offer structured follow-up support. In my view, their approach should be used as a benchmark, with clear service standards that all providers are expected to meet.

If Right to Choose operated within a clear framework, with defined standards, a centralised portal for patients to access information, and consistent support documentation, it could become an excellent resource. At present, however, that consistency and infrastructure are lacking.

Steps to Wellbeing also has potential to be a really valuable service. However, it would benefit from having a dedicated neurodiversity pathway. I was referred for anxiety and depression, conditions I did not have, and as a result the initial counselling I received was not appropriate or helpful. When I accessed the service again, I was fortunate to work with a counsellor who had personal experience of clinical OCD (obsessive compulsive disorder). He understood the nature of my experiences, and we had 10–12 productive sessions that were genuinely beneficial.

Referring neurodivergent individuals to generic anxiety and depression services, without recognising the underlying neurodiversity, is not only ineffective but also a poor use of resources. A more tailored, personalised and informed approach would lead to far better outcomes for individuals."

If you could change one thing about health and social care services, what would it be? 

"Just that. It would be exactly that. 

It would be helpful to have a system in place so that when a neurodivergent person contacts their GP, this is clearly flagged before they speak to the receptionist. There needs to be greater awareness and understanding, not only at GP level, but at the receptionist level as well. At the end of the day, how can you change something that you don’t understand? 

There is also a significant gap in support between diagnosis and titration. Currently, there is a ridiculously long wait between receiving a diagnosis and beginning titration, with no structured support available during that time. It is within this window that many people begin to struggle with their mental health, and without interim support, they are at risk of deteriorating unnecessarily."

NB: Right to Choose is a legal right in England allowing NHS patients to select their preferred healthcare provider and consultant for a first outpatient appointment, including for specialised services like ADHD or autism assessments.

NB: Shared care is a formal local agreement that enables General Practitioners (GPs) to accept responsibility for the safe prescribing and monitoring of specialist medicines. Shared care provides transfer of care from a specialist to the GP, where this is suitable and, in the patient's best interests.