"Misdiagnosis and poor treatment from the NHS all my life"

About: Ayrshire Central Hospital / Adolescent Psychiatry Ayrshire Central Hospital / Child Psychiatry Three Towns Resource Centre / General Psychiatry

(as the patient),

I’m in my mid-20s and female. I’m also autistic and have struggled all my life with things without ever really knowing why till last year when I finally got an official diagnosis. It was definitely a good thing for me to get and it almost felt like an epiphany. It was like one large jigsaw piece that slotted into and explained the missing parts of my life and how I was different. However, in retrospect, looking over the last decade it has only just hit me how atrocious the care I feel that I received from the NHS.

Firstly, let me start with the actual diagnosis, my parents had to pay thousands of pounds for it privately because the NHS in my area didn’t have a single employee capable of not only diagnosing ASD but even recognising ASD if they ever came across it. I was also told by a psychologist in primary care that there was only one person who can diagnosis autism that I could have seen but it wasn’t their primary job and that I would likely not get a diagnosis from them for years and was ergo advised, to go obtain a diagnosis privately elsewhere. So my parents had to pay money for something that seemingly everyone else with autism gets for free. What we were paying for was to have the diagnosis done in a matter of hours but it was vital we did so as not knowing what was wrong with me (or different) was having a huge impact on my mental health and life. Repeatedly trying to live even a remotely semi-functional life (ie going to college etc) and repeatedly failing for 10 years was frankly taking its toll; physically, mentally and emotionally. I also didn’t receive the appropriate help I needed at college both in class and wasn’t entitled to any financial help either. I’ve been stuck in the house most of my adult life as a result, repeatedly being told and therefore believing I’ve had depression all this time and this is how my life is and was always going to be, so much so my life has barely started at all.

I’ve been seen by many healthcare professionals over the years, I was referred to CAHMS at the age of 16 via referral from my GP as I was severely depressed, had been self-harming and just dropped out of school. There were one or two times where I was even contemplating suicide but my GP wouldn’t prescribe me medication because I was under the age of 18. I had to wait almost a year before seeing a CPN but only had two appointments and I was left in limbo again as there were no other people available to see me. A few months later I saw a psychiatrist. A dispute arose about who should prescribe me anti-depressants and they both heavily involved me and used me, the patient, as a messenger between the two, all the while I was severally depressed and had not been prescribed medication by either. My mum eventually phoned the mental welfare commission on my behalf and ultimately the psychiatrist agreed to prescribe me the medication. I thought that was the end of my troubles until the psychiatrist I was seeing gave me medication that, not only generally isn’t given to young people but one that isn’t frequently prescribed at all over the more commonly known anti-depressants. I was given Mirtazapine and I had an adverse reaction to it including vomiting and hallucinations. I came off them straight away and was eventually given Fluoxetine. So I had gone to my GP, suicidal at the age of 16 and it wasn’t until nearly 2 years later that I was eventually given medication and I had still not received any real input.

In total across both adult and child mental health services I saw three psychiatrists, two noted and told me that I just had “social anxiety” but there was also a “psychological component” to that but neither ever elaborated or cared to investigate further. In child services I eventually saw an occupational therapist and I liked her and felt like I was just starting to get good input when just before I turned 18 (because I wasn’t in full time education) I had to go to adult mental health services. At the time I didn’t want to but had no choice. Things went from bad to worse in terms of the input I received. In adult services I waited over a year for a psychologist appointment and I went twice only to be told I wasn’t ready for the input and was put back onto a years waiting list. The sessions were too hard for me and now looking back they were never catered toward an autistic person, the questions asked of me were far too general and non-specific so it was highly likely I never even understood what the psychologist was asking of me. I’d always stumble on questions like “how are you feeling? ” etc. and nobody ever seemed to pick up on my difficulties surrounding these types of neurotypical questions.

Another year or so after that and I eventually referred to occupational therapy in the adult services, but I had some poor experiences with staff only seeing me a few times before deciding I didn’t need the services. For example, I was told me to go to an art class to socialise and I was reassured there would be other people my age there. I ended up in a room full of pensioners. Which might seem humorous but to me at that time, having no idea what was wrong with me, having no friends, barely going outside, completely going out of my comfort zone to end up feeling even more alienated in a room full of people sent me into a panic.

By now I’m in my early twenties and with waiting times so long I almost gave up on the health service. I was eventually seen and I experienced the most helpful input I’ve ever received from the NHS, I started seeing a counsellor, who, even though didn’t pick up on my autism, still helped me enough so much so I coped with a full time college course for 8 months for the first time in my life. I only got to the counsellor for 9 sessions but they helped me immensely, it is just a shame that the kind of help and actual signs of investment showed wasn’t there from most other people I had seen previously.

Lastly, not so much to surmise and not to labour the point, but what is even more grating, and to get to my overall point about the service and my story, is that I’ve been autistic my whole life, I’ve seen many healthcare professionals since I was little and not a single person ever cottoned on. In my opinion, and let me be absolutely clear here, the reason I haven’t had a diagnosis is a) because of my age b) my sex. In my opinion, there is an inherently sexist narrative regarding autism in females that sadly, evidently still exists within the NHS itself otherwise I would have gotten a diagnosis as a toddler and if not a toddler a child and if not a child then a teen and if not a teen then my early twenties – but it never came. I feel that was very obviously autistic from a very young age, the age range at which it is most evident: I was non-verbal, I wasn’t walking or going along the normal path of development most babies do but I had extremely repetitive behavioural patterns and I was fixated on games and computers from as young as 2 and could use them so easily. I didn’t play pretend or interact/talk with other people or children at my playgroup, I didn’t make eye contact and when I did finally speak I spoke in sentences - these are all textbook examples of autism, dare I say even stereotypical examples of autism. I was so unresponsive to social stimuli that my mum called a health visitor because she thought I was deaf and dumb, so I have definitely been in the system from a very young age. So even though I had displayed all the classical and typical signs of autism because I was a girl my mothers’ concerns were dismissed and autism was likely never even thought of, but had I been a boy, I think I would have easily been referred onto a specialist. My mum also mentioned in passing to my GP that she thought I was autistic when I was in my late teens and again she was dismissed. I could forgive this if it was missed once or by one or two people, but to be missed all my entire life and throughout all the wide array of medical professionals I’ve seen has made me feel utterly and systematically failed by the NHS.

Where I’ve been let down the most is not what my life is now but what it could have been, I’m an adult who has had a late diagnosis of autism, I’m already set in my ways. If I had been caught earlier by anyone, I could have been taught things that only an autistic developing brain can learn that my now fully developed autistic brain simply cannot learn, and as a result I could have turned out a much more functioning individual than I am now.

To say I am disappointed in the NHS is an understatement.

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Responses

Response from Derek Barron, Associate Nurse Director, Mental Health Services, NHS Ayrshire and Arran

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Dear Blair25

I'm sorry that your experience of the NHS has been less than helpful over many years.

I find it difficult to know what to say that would be meaningful and convey an appropriate apology, given the extended period of time when we have been unable to fully assist you.

I will highlight your post on Patient Opinion to Thelma Bowers, Head of Mental Health and agree with her who best to respond and/or meet with you - if you would find a meeting helpful.

Thank you for posting your comments here, we really do want to be better at delivering our services and you feedback is helpful in us recognising where we could do better.

Derek

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Response from Derek Barron, Associate Nurse Director, Mental Health Services, NHS Ayrshire and Arran

picture of Derek Barron

Dear Blair25

Apologies it took me a few days longer to catch up with my colleague regarding how best to assist.

Having discussed your post with Thelma Bowers we would like to suggest that you contact Dale Meller, Senior Manager, community mental health services on 01294 317790 (you can leave contact details and Dale will contact you back or simply arrange to meet Dale when you contact her office).

Dale will be happy to meet with you and will also arrange for Tommy Stevenson, Senior Manager, Child and Adolescent Mental Health Services to be there as well, if this would be helpful.

Thank you for contacting us, I hope, if you agree to meet with Dale and Tommy that it proves useful for you and helpful for us to learn from.

Thank you

Derek

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