I have always been different, no matter how hard I tried to fit in.
When I went on holiday with a friend to Vietnam and Cambodia, I realised something was interfering with the trip. For some reason I found it really hard to organise myself and to avoid forgetting things. What was wrong with me?
At 14 I had the maths age of an 11 year old and the verbal reasoning score of a 16 year old. Maths was boring, so I just didn’t pay attention and doodled or daydreamed instead. The educational psychology assessment meant that I did not have to do Design and Technology GCSE. Before I was exempt I nearly broke a sewing machine needle when I got distracted, and made muffins without dough (inedible) as I couldn’t follow the steps without getting distracted.
I tried to do a nursing degree, but it took me an extra week than it should have to learn leg bandaging, after seeing two different techniques. After this I was diagnosed with a “non-specific learning difficulty.”
I got distracted during the assessment by a noise in the waiting room, and felt maybe I hadn’t performed well because of that. I got withdrawn from the nursing degree as I was “not consistent and competent enough”. This was just after I had seen a disability assistant, who said that with strategies I could learn what I needed to. The Royal College of Nursing said I had suffered discrimination and were willing to take the case further, but I realised that I could not learn the practical skills and was unsure why. I was not stupid, so why had I been trailing behind my course mates? As my personal tutor had suggested I had autism, like her son, I went to the GP.
I got referred. Back in 2018, the NHS wait was a mere six months. It’s now four years.
The consultant psychologist asked me to tell her about my life for an hour. She then said “I wouldn’t worry, most of my patients with ADHD [Attention Deficit Hyperactivity Disorder] struggle to have relationships and hold down a job, so you’re doing well.” She signposted me to a local support group. I apparently did not have ADHD badly enough for a diagnosis. I also did not have autism.
I went to the group, and for the first time, I sat in a room full of people where I felt I was on the same wavelength and I could understand them. We talked fast, we had lots of ideas, we were emotional, we were interesting. Here, for the first time, I fit in. They spoke of being let down by the NHS and their struggles firstly to get assessed and then to get medication and to get changes to this. They spoke of mistakes and failures in their lives that they felt had been caused directly or indirectly through ADHD, and they sought help in managing the chaos.
ADHD continued to affect me, but I did not do much research, as I reassured myself that the NHS had told me I did not have it badly. It was a spectrum and I was at the mild end of it, so I was fine. My boyfriend and friends disagreed. I had gone from my mum organising things for me and finding lost property to my boyfriend doing that. I was so frustrated – why couldn’t I do this like most of the people I knew? What was wrong with me, and what on earth could I do about it?
After some research, I realised that I had not been adequately assessed on my life before the age of 12. This meant that I could not have been diagnosed with it, as you had to have it before then. I asked the GP for a reassessment, explaining how it affected me on a daily basis. However, weeks later, they informed me that the reassessment request had been declined due to insufficient evidence of ADHD. I was so frustrated, upset and angry. So I just had to keep struggling? I was fed up of being distracted, emotional and forgetting things.
I could not afford a private assessment and I was lucky that my boyfriend could. He shelled out £1200 and within weeks I had an appointment with a psychiatrist. There were no private appointments in my city, so we had to travel to a city nearby.
Before the appointment, my mum and my boyfriend completed a questionnaire and I was asked to bring school reports. “Your boyfriend scored you 9/9” the psychiatrist explained, “and your mum scored you 4/9 for your childhood, which is one below the threshold for diagnosis. However, it is possible that your parents compensated for any difficulties during that time, and so they might not have been as noticeable. Have you brought your school reports?”. She read through every single one up to the age of 12, nodding and making notes.
“There’s enough here for me to score you 5/9 for your childhood”.
She then asked me about my life and how ADHD affected me. At the end of the appointment she confirmed that I had it, and I proudly announced it to my boyfriend in the waiting room. We had finally come to the end of the assessment journey.
I feel that I have been let down by the NHS and as a result I have had years more of difficulty due to a flawed assessment.
The BBC Panorama programme on ADHD has received 1800 complaints and counting. A reporter who was told by an NHS psychiatrist that he did not have it went to three private clinics, where he was assessed by a pharmacist, a trainee nurse with a supervisor, and a psychologist, who was more interested in playing with her hair. In my opinion only a psychiatrist should be able to diagnose patients. Unfortunately due to staffing, the NHS as well as private clinics have trained up psychologists, nurses and pharmacists to deliver the assessments, and from what I saw on the programme, they were not of good quality. The clinicians were asking leading questions. But the reporter was also answering as if he had ADHD.
I’m glad that I got assessed by a psychiatrist and that the process was thorough. I feel sorry for those who have shelled out and have been let down. I also feel bad for those who, like me, were let down by the NHS. I am also disappointed that patients are not offered CBT therapy for ADHD, to help them manage things such as emotional dysregulation. All diagnoses should come with support for patients to understand the condition, how it affects them, to come to terms with it, and to work out how to mitigate it. It is not simply enough to say right lets put you on medication.
The reporter’s programme and article was unbalanced – it only included how the private clinics had got it wrong. The NHS psychiatrist on the programme then wrote a more balanced article for The Guardian where he explained that many NHS patients had resorted to private assessments due to waiting lists, and that there were undoubtedly many sound diagnoses from the private system.
The problem is that the BBC article and programme discredited the private system to the effect that two family members and a friend have now suggested I don’t have it. What’s ironic is that they’ve all seen the impact it has on my life, and theirs, as they reunite me with items left at theirs, or put a “phone, keys, wallet” post-it on the door…
literarylydi 