Getting Help Shouldn’t be this difficult: The story of my ADHD diagnosis
When I was in my 3rd year of university, a little over 2 years ago, I realised I probably had ADHD. Covid times had made this more apparent, and I was really worried about my ability to take remote exams successfully. I told my GP this was a concern I had, and they said they would send off a referral. When I moved GPs a few months later I asked if there was any progress on this — they said the old surgery hadn’t sent this off.
I got my new GP to send off this referral, and waited a year and a half, before a GP on my placement early this year suggested I phone them to see if there was any news. There was. They said they had sent a letter to me in November, and because I didn’t reply within 10 days, I was taken off the waiting list. I am still yet to receive this letter.
At the end of this call they said they would put me back on the waiting list where I was before. In March this year I phoned again, only to find they had not done this. They were now booking people referred 2 months after me.
I had my initial assessment in March. I gave an accurate account of my life, including the fact that I leave my back door unlocked because I lose my keys so much, that I have visual cues around the house to help me out, that I can’t read a full page of writing. At the end of this assessment they told me I had ADHD traits, but not enough functional impairment for a diagnosis, and they wouldn’t ask for a collateral history or school reports. I am fairly sure this is due to me being a medical student and never having been arrested and therefore surely I can’t have ADHD right?
When I asked them where this left me, as I had an educational diagnosis of ADHD already, they got angry with me for not mentioning this. It was in my notes which they had in front of them, they just hadn’t looked at my notes. They defensively refused to change their position.
I then asked if I could have a second opinion as I currently had one yes and one no. The response: I have my trainee here and he agrees with me, so you already have a second opinion. I eventually convinced them to discuss with their consultant, and in the meantime gathered evidence of functional impairment in the form of statements from me, my partner, a friend, and a tutor at medical school. When they discussed with their consultant they agreed to talk to my father, and read my school reports.
As I gathered this information, the very service who took me off their waiting list after a year and a half for failing to reply to a letter I didn’t receive sent me emails complaining that it was taking too long for this evidence to get to them. My school reports actually gave some very impressively positive evidence from the very beginning — I started to feel more confident in changing their minds, after all, my first ever school report practically quoted criteria for ASD and ADHD — it was almost like they were subtly pushing my parents to look into it.
After they got to talk to my father and see my school reports, I got an email inviting me to a zoom meeting to get the results of this. I then received zoom links for 2 days and 9 days after this proposed date, but not one for the actual date I was given. I had to ask them if they had made a mistake to get this fixed. The email inviting me to this meeting was a source of over analysis and worry for the week before this appointment. I overanalysed every word of that email to try to determine what they would come back with as an answer.
I had so much hope in that meeting. They ended up telling me they had just humoured me in asking for more evidence, and made it very clear they hadn’t chosen to pay much attention to the extra information I had given. Their explanation: “you have traits, but you have unresolved trauma and we think it’s that”. It is a well known fact in the ADHD community that ADHD leads to mental health issues and trauma. They didn’t even consider this as an option. Neither did they give me any idea of how to move forward even if I did believe them on this as a cause. Furthermore, they then tried to dissuade me from pursuing private diagnosis because “your GP will be able to see our report” and asked me “why do you want to have ADHD?”. I don’t want to have ADHD, I want to have help for my ADHD. The difference is colossal.
I knew I had to go down the private diagnosis route. This disorder has been a constant battle, which I’ve been slowly losing ground on — I wasn’t sure how much longer I could keep it up. I got an appointment in 2 weeks. They saw the struggles I went through, and were amazed by how much it was impacting my life. They were concerned over the door locking, agreed I’d done everything I could lifestyle-wise to manage what I could, and expressed their horror and sadness that nothing had been done sooner. They picked up on how classically I present for a high achieving AFAB person.
I got medication 3 days later. For the first time in forever I felt calm. I could focus. I could read the questions on the page in front of me. That first day I got all of the work I would usually do throughout the day and into the evening done before noon. I put clothes in the laundry basket before I couldn’t see the floor. I took my coffee mugs downstairs. I watered my plants. These medications which made me able to do normal human functions worked far better immediately for my mental state than high dose antidepressants have at any point over the last 3 years. And when it wore off, I felt the full force of how horrible it is to live in my brain. The inability to do nothing, lack of attention to do anything, the restlessness presenting as ever present anxiety tick tick ticking along.
This journey so far has cost me over 2 years of my life, and around £800. I’ll have to be under private care for at least a few months before I can (if the NHS agree to it) move to NHS care. I expect that to be at least the same cost again, if not more. I’ve lived frugally, and saved money all of my life yet I’m currently looking at completely wiping out my bank account just to get treatment the NHS should have given me for free, and to feel like a vaguely functional human being. And I’m one of the lucky ones — I have the money to do this, and people around me will support me if this buffer runs out. If I had no money to my name, I would be facing the rest of my life in that horrible anxiety ridden mind.
What has really shaken me about this experience is knowing that the organisation which failed to see ADHD in me, someone who exudes ADHD to all they meet, will continue to fail people, many of whom won’t have access to the resources I have. Multiple people I know have seen this failure and thought “If they don’t see it in Jack, they don’t stand a chance of seeing it in me”, and decided to go private as well. This is the organisation I will be working for in just a year’s time.
Things need to change. I hope you agree.
Thank you for reading my story. Although it’s full of terrible failures the process through, let’s not forget: it certainly has a happy ending. I can’t end on “and they lived happily ever after”, but I can leave you with the knowledge that life is better for me now, and I have hope for my future again.
