Hitting brick wall with the NHS? Try a different GP

Not my brain

It's no secret that I sustained a head injury at birth and that I've had memory difficulties my whole life. Something that I haven't particularly discussed, is that I wasn't properly diagnosed until I was 26.

I had visited psychologists throughout most of my life. Each time, the doctors- from what I could remember- gave me little bits of information about my condition. Most of the time these were sub-standard, partial assessments that didn't actually do anything to move me forward in any way. And, due to the problems themselves, I couldn't follow what was happening with these psychologists and their diagnoses. At 16, when I got to college, I was under the impression that I was straight-up thick. None of the previous assessments had correlated, and nobody the assessment had been sent to (special needs teachers etc) had asked me about it.

As things started to get difficult in college, my tutor thought that the problem could be dyslexia. I didn't believe him, but it didn't occur to me that I had psych assessments at home that would not only contradict the idea that I was dyslexic but would explain, to a certain degree, what the problem actually was. Hence, he guessed at dyslexia, a college support tutor didn't know any better so agreed with him, and them at university some years later a psychologist also didn't know any better so ran few basic tests and labelled me with 'visual memory / dyslexia.'

I carried this label for a long time. Between 16 and 25 I knew that there was a problem. I knew it had something to do with memory, but I felt like I was blagging the system by telling people I was dyslexic. Spelling was one of the only things I could do throughout school. A number of people ran tests on me and not one of them realised that the problem couldn't possibly be dyslexia.

By the time I was 25 I'd stumbled onto an employment scheme for adults with disabilities, and, surprise, I couldn't do the job. The 'dyslexia' was causing problems that nobody (other than me) predicted. The scheme sent a support worker to sit with me in the office. We'll call her JM. JM had a degree in psychology, and she started to help me put together systems that would help me in the office.

Within a couple of sessions, she'd got to the root of the problem. I wasn't dyslexic at all. I'd been misdiagnosed. Had I ever had a knock to the head? She asked. I showed her the pretty large scar on the back of my head. That's what it will be, she said. You've got memory difficulties from that head injury. You need to get reassessed, she explained. She mentioned The Beeches, an NHS department which, at the time, specialised in memory issues.

So I went to my GP. We'll call him Dr W. I asked him for a referral to The Beeches, explaining that the problems with my memory were causing a lot of problems and having an inaccurate label of dyslexia was making things a lot worse.

Dr W claimed that the Beeches was just 'for old people,' and that they wouldn't help me. He made a referral to some other department.

I went back to work to speak to JM. No, she said, your GP is wrong, they work with adults of all ages and they're waiting to see you. I've spoken to them, and all you need is a referral from your GP.

So I went back to my Dr W, and asked again. Okay, he said, I'll make the referral but you won't find the answers you're looking for at The Beeches.

I went to the Beeches, and the psychologist I'd been booked in to see wasn't there, so another psychologist had taken his place. He asked me a few basic questions about my background and education, asked if I could remember his name (I gave the name of the doctor I'd been booked to see, not his), made a few notes, and ended the session. He said he'd be in touch.

A week later he sent me some notes from the meeting, which I still have, which contained loads of inaccuracies. There were things detailed that I never said, he'd got the age difference wrong between myself and my sister, he clearly didn't understand how GCSEs worked and couldn't grasp that English Language contained an additional score for speaking and listening that didn't count as a separate GCSE, and of course he hadn't actually ran any tests on me so what had been sent wasn't anything like a psych assessment.

After this I went back to the same GP, who forwarded me to other, equally bemused psychologists who couldn't grasp that I wanted them to test me to get to the bottom of the problems that I had.

Around a year later, in work, I spoke to a course trainer who was delivering a disability awareness course. I think he was called MH. I explained my predicament: A job I didn't understand, a support system that didn't understand me (JM had left the organisation and her colleagues were still clueless) problems with my family, a meagre part-time wage, no benefits, a label of dyslexia that I don't have, memory problems that I don't understand, and issues with my social life and relationships. I felt (correctly) they were all connected. Could he help?

He gave me his email.

The same day, I dropped him a line thanking him for the training and asking if he could help. He said he'd get back to me. I've heard that before, I thought.

The next day, though, he called me back. He'd got me an appointment with a neuropsychologist called GW. The name rang a bell.

I met with GW- we'd previously met through work over the years- and she agreed to properly assess me and rule out all the conditions that people wrongly suspected I might have. Over a few sessions she tested me properly, homing in on the issues that I had and ruling out the ones I didn't- dyslexia, dyspraxia, autism, instabilities in character- all these were thrown out and I got a solid assessment for short term memory difficulties. While these sessions were taking place, as well as testing, we'd look at areas of my life that needed improving, and one session at a time, I started to develop coping strategies.

Years later, after these sessions had passed and I'd met with a handful of other professionals too, all the advice I'd received still wasn't enough. It was 2014 and I was sure I had depression. I still couldn't talk to women. I was falling out with a lot of friends and shouldering the blame for this. I needed proper advice. I went back to Dr W. His advice was that there 'wasn't really any support out there' for depression.

So what did I do? I went to Manchester to the Samaritans on Oxford Road. What the hell else was I going to do?

The guy I spoke to was really helpful. His advice was to try a different GP at the same surgery. My GP should have forwarded me to services that definitely do exist. I phoned, and booked an appointment with Dr W2. Straight away, Dr W2 put me on a waitlist for psychological therapies. It took 7 months for the sessions to come around, but at least I was on it. The sessions were really helpful. They just didn't last long enough, but that's another issue. Now, for referrals an general appointments, I only deal with Dr W2.

It pains me to think that, in 2008, I tried to meet with a psychologist that could advise me, but I didn't manage to until the following year. (It's more so that she had meetings in the building I worked in.) Dr W gave me further problems after meeting with GW, when I'd been forwarded to Social Services and things had taken a backwards step. Dr W treated me like a hypochondriac. If I'd have just tried a different GP at that point, I could be so much further ahead by now.

I don't know whether others have experienced this, but if two NHS employees do the same job, and you go to them both with the same problem, they (theoretically) should give you the same advice and make the same referral (not that they should need to). But they don't. Take it from me. If you hit a brick wall with one, get a second opinion from another. You may find that immediately you'll get a referral that moves you forward.