Blog: My experience trying to get an ADHD diagnosis in Sheffield
Paul's story:
My brain is constantly on fire with worries and thoughts, 24/7. Chatter. It always has been. As a child it surprises people that I was outgoing initially and did a lot of behaviours associated with ADHD. I was bullied a lot and masked behaviours to blend in. I was told as a child I had anxiety and depression and ever since. My parents didn't work for most of my childhood. I was regarded as the one who had the least problems in my family. In adulthood the 'hyperactivity' is internal as it is for many people.
My journey to assessment began really with CAMHS (Child and Adolescent Mental Health Service) a long time ago. I went to a primary school where there were low expectations and in that era things were different. I blitzed primary school. ADHD was seen as a thing for extremely naughty young boys and even then you often would not get a diagnosis. In secondary school I did fine, but it was a massive struggle, by this time I'd developed extensive checking behaviours, high anxiety and depression. To leave the house and do anything I'd check endlessly. These were also behaviours my mother had, who was famous for writing lists.
I was sent to CAMHS for assessment on my own and discharged after a couple of face-to-face meetings. I was told I cope very well, so didn't need help, which is an ever repeating theme ever since. Desperate at university, I had a term of counselling in my third year which I attended to also explore other things. This was just before ADHD was recognised in adults so I couldn't get a diagnosis.
After this, I was aware the waiting lists in Sheffield took years so I didn't bother. Why I sought a diagnosis in recent years was Right to Choose came along a few years ago and Psychiatry UK in December 2020. In England this allows you to get an assessment much quicker than the official 5 year waiting list for assessment in Sheffield. So when I got referred it was 6 months, it's probably longer now. Also during this time access to work, reasonable adjustments for ADHD and particularly ADHD coaching have come along.
The barriers I have faced have been being told all my life I cope well, I don't need help, I've been told dismissive answers and clinicians not agreeing to a referral for assessment. This wasted many years.
What needs to happen to make experiences better for people is more information about ADHD in Primary Care and less judgement. People who come to see GPs are not 'jumping on the bandwagon' and all the other language used in person and the media. People need to understand people have put this off for years and often only seeking diagnoses when they feel things are really bad.
Information I found useful was talking to many other people who'd been through Right to Choose or purely privately, youtube, ADHD UK, the ADHD adults UK charity and podcast, reddit, SEED talks and Taking Charge of Adult ADHD by Russell Barkley. Some of these resources even told me gave me print outs to take to the GP, so make their life easier if they agreed to a referral.
It was also useful to get a second opinion from another GP within the same surgery a couple of years later. I didn't know them, they were more helpful. So I told them far less in those 7 minutes and knew far less of my history and yet they said they'd do a referral. The GP didn't know much about Right to Choose, other than it was possible and the surgery didn't do them very often. They said could I keep the paperwork I'd brought them as referrals sometimes took a little while to work out the details and make sure it was done 100% correctly (a theme I've seen online a lot). They were misinformed about waits, they were told it was 2 years for SAANS and Right to Choose was also 2 years, but agreed to do Right to Choose if that's what I wanted.
I did not choose to go purely private. For a start I don't have the money. I am aware (many aren't) that aside from the initial cost of assessment, if a GP will not sign a shared care agreement, then a patient for whom medication is appropriate, may be paying £100+ a month for medication indefinitely, or at least until the stressful process of coming to an agreement is sorted. However it's so tempting, even a wait of of 6 months or a year is unbearable.
How long does it take for an adult ADHD diagnosis in Sheffield now?
Now Then Magazine recently published an article in October 2023 about this issue. They submitted a Freedom of Information (FOI) request, which revealed:
"In the 12 months between June 2022 and June 2023, just 21 adults received an assessment for ADHD from SAANS, resulting in nine diagnoses - with 5,481 service users on the waiting list at the end of the same period.
At a rate of 21 assessments per year – an average of just 1.75 a month – it would take no less than 261 years to get through the current waiting list."
In a second article on this topic, Now Then spoke to Melissa Simmonds and Katie Drinkwater from Sheffield Autism Partnership Network (SAPN). They shared their personal stories of diagnosis and reflected on the experiences of people waiting seemingly indefinitely on waiting lists for assessment. Their stories echo some of the themes in Paul's, especially the masking and coping mechanisms developed by adults who have not had their ADHD recognised or supported in their earlier years.
Where can you get support?
Paul has shared some of the resources he found helpful when he was waiting for assessment:
- ADHD UK - a charity where you can find information on a range of topics including Right to Choose
- ADHDadultUK - a charity where you can find information and support specifically relating to adult ADHD
The NHS organisation who carry out assessments and diagnosis for adult autism and ADHD in Sheffield is Sheffield Adult Autism and Neurodevelopmental Service (SAANS). You can find out more about them on their website.
We would like the thank Paul for sharing his experiences, which we hope will be helpful to others in a similar position, or even earlier in their journey.
