Mind the gap!

It pays to complain it seems. Last Friday I had a phone call to (hastily) arrange an appointment with the Head of Adult Psychology who turned out to have a familiar name. Dr D used to work at the Local Mental Health Unit as a psychologist/psychotherapist so I had heard a lot of good things about him from service users. He has a very professional manner and a lot of expertise in personality psychology and personality disorders. I have a lot of faith in him. I was given an AQ and EQ questionnaire to fill in, but they weren’t needed as they had found Mr S’ notes. This meant that Dr D concentrated on gathering more of my history.

On Monday he saw my mother and me together and today he saw us separately. I noticed that the questions he asked were more like a general mental health assessment than necessarily specific to autism, but given that I have a history of being abused that seems sensible. He also asked about my alcohol consumption and if I was getting help to reduce. I said that I was getting help and that I was happy for him to link up with my key-worker at the substance misuse team, mainly because I think a lot of my difficulties have been down to various parts of the health service treating different conditions without communicating with each other. Until recently nobody has co-ordinated my care. Ultimately I don’t particularly care any more what the diagnosis turns out to be so long as it is accurate and I get the right support and treatment. I am tempted to second guess the diagnosis though! I think of it as a sequence of layers – autism at the bottom causing generalised anxiety disorder in the middle, coupled with PTSD from the abuse (also in the middle) with substance misuse disorder on the top caused by years of self-medicating against the anxiety and memories of the abuse. It’ll mean a lot of time in therapy, but I’ve been trying to get therapy for a long time anyway so it would be an answer to my prayers.

The mental health system in the UK is very much a two-tier system. If you have ‘mild’ mental health issues you get treated in primary care which usually means 6 hours of CBT or counselling and a repeat prescription of antidepressants. Every so often the doctor changes the antidepressant if you don’t improve. If you’re lucky you might get another 6 hours of counselling. Rinse and repeat. If on the other hand you have what is classed as severe mental health issues you get treated in secondary care. You get classified as having severe mental health issues if you have a personality disorder or symptoms of psychosis. The trouble is that there are people who fall in between these two classifications with moderate mental health issues. They used to get treatment in secondary care, but since the hospitals closed secondary care has had to treat more people without a bigger budget. Secondary care understandably prioritised people with the most severe conditions which meant that those of us in the middle ended up receiving inadequate care in the primary care system. I’ve been falling through this gap for a very long time. “Mind the Gap“, an article from The Psychologist offers a very interesting solution to this problem.

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Drink and Drugs

I’ve been drinking too much for a long time. It’s mainly been self-medication. It was at its worst around the end of my last relationship which had been increasingly turbulent with time. With hindsight, my ex’s escalating BPD and my autism and escalating drinking was a recipe for disaster. Counselling with a peer mentor got me down from 35-40 units a day in the months after the separation to between 8 and 22 units a day depending on anxiety levels with the occasional day off. However it was a struggle to cut back any further so I’m now trying an anti-craving drug. The liver function test which I didn’t know I had to have was a wake-up call. Luckily the result was not too serious – some inflammation, but reversible if I cut down or stop. I now have to have blood tests every few months – not good as I can’t stand needles, but at least it’ll keep me motivated. The doctor is trying me on Nalmefene first but for some reason none of the pharmacies in town stock it and only one will order it in. Very odd. I’ll start on the Nalmefene on Thursday and see how it goes.

Delays and more delays

Well today was meant to have been my first autism assessment appointment, but they cancelled at the last minute – again. The last cancellation was because they sent me the wrong appointment dates. This time it’s because the Advanced Practice Nurse at the Autism Service is sick without anybody to cover for him. The last time this happened the waiting list was delayed for 3 months and I got knocked off the waiting list because they mislaid my file.

The annoying thing is that as far as my family, support worker, the Advanced Practice Nurse at the Autism Service and the Psychiatrist who made the referral are concerned the result is a foregone conclusion, but I have to be formally diagnosed to access the support I need to live independently. I can’t access any talking therapies for my mental health issues until we have the result. Basically the only treatment I can have is antidepressants, but I’ve yet to find an antidepressant that actually does anything more than keep me from killing myself. I’m stuck on welfare and I’m lucky if I can handle a 2 mile bus journey most days. I want to get better – this isn’t a life, it’s an existence. My life is on hold. 16 months from referral and still waiting.

Rant over.