Published on 12, July, 2020
I’m autistic, and I’ve been dealing with depression and social anxiety for over a decade, now. My family has been battling the NHS to get the little support I have now. I am wondering how other autistic people are finding the NHS.
My first issue is that there are no autistic professionals accessible to me, which means I’m having to try and educate every professional I encounter on autism. I’ve been struggling to properly understand what autism is, myself, so I haven’t been doing great. I’m thankful to have an Adult Autism Intensive Support Team that operates in my area, because they have now taken up the role of educating NHS professionals on autism, but that means I’m now having to hope these other human beings internalise what is said to them, view me as equal, and treat my problems as equally as serious as a non-autistic person’s problems, which has happened rarely so far, it feels.
My second issue is the interactions with the professionals who do not care that I am autistic. Having a psychiatric doctor laugh when I told him I was autistic, asking me if it was something I had read on the internet. Having an occupational therapist try asking me to separate myself from my autism. Medication being the solution, for the time being, while I waste years of my life terrified of the world around me. I wonder what else there is that I’ve forgotten to mention. I should document the things that make me feel miserable.
If I were a caged animal, I’d have somebody in my corner. Somebody would scream “This is neglect!” Unfortunately, I’m an autistic human, so I don’t really have that. I have a team of NHS employees in my corner, who aren’t willing to bite the hand that feeds them, verbally, of course. Who would be willing to criticise the one that pays them, that gives them what they need to make it to the next day? I’m trapped, because they’re trapped. I’m losing hope. I have no faith in the NHS, or in British society to force our political leaders, those whose jobs it is to serve the people of our nation, to come to the aid of any autistic person.
In short: I have no faith in the NHS’ ability to help autistic people. How about you?
We can throw as much money as we like at the NHS and other public bodies (which very often is mismanaged and wasted) but regardless of whether or not the NHS remains as it is and/or is privatised (which Labour seem to be proposing) the whole culture, attitude and mindset of the NHS needs to fundamentally and radically change, especially in relation to mental health, disability and hidden disability issues, perhaps even having a separate public body entirely for dealing with disability and mental health issues and rebranding existing NHS mental health facilities - too often, they cling to myths, misconceptions, outdated ideas and concepts when dealing with mental health and disability issues for fear of abandoning their core values and traditions, which makes them unwilling to embrace newer ways of looking at things and/or latest research - for example, there are outdated ideas in relation to autism such as “people with autism must never be allowed to live alone” or that “the only way to manage autism is via ultra strict discipline” or that “anything that an autistic person says must always be dismissed as nonsense and ignored because that’s just the autism talking” - we already know that the most forward looking research and ideas into autism best practice is coming from Australia so why is this not being implemented as basic in the NHS here in the U.K.? This is something that must be robustly challenged at every level
Mental health wise I stared with a call to NHS doctors last year when it was all too much to carry on with, they offered me tablets (I refused) and CBT, no thought towards the underlying issues, after that I went private doctor and referral for diagnosis.
I was in NHS hospital last year myself and recently my daughter had meningitis so was in for a few weeks
Observations from both occasions are -
Most of the staff are excellent and really care.
It's a process disaster, most processes don't hand off to eachother, so nurses and doctors don't know what's happening with you, your medication, tests, anything, unless they've been there to see it. Shift change and you're left explaining why your there to yet another bunch of people, who then battle the same processes for hours only to hand over to another team at the next shift change. We had to chase medication when it was four hours late various times and all sorts, had we not been there to chase them she'd have been left.
Some wards don't digitise your case details, so they rely l on paper like it's the 70s.
Wards move patients to clear beds not telling the receiving ward of their full story, my daughter wouldn't have been allowed on the surgical ward she was dumped on had they known she was infectious with shingles and meningitis , so when we told them , she has to stay in a side room for two weeks and not use toilets or showers. We heard nurses on the phone begging for hours consultants to come, who didn't, patient then died and 15 minutes later they're having to carry on like it didn't happen, poor souls must all have PTSD.
Due to the lack of communication processes, diagnosis takes way too long. I had textbook symptoms but after a CT they said was precautionary and we're going to send me home , they rushed me to theatre , it was 4 days into my stay and my appendix was in a right state , meaning the op was a nightmare for the surgeon, along with me having a serious infection as result. I was released home in a right state , still with an infection 2 days after the op.
No amount of money will fix seriously bad processes and organisational dysfunction. The staff are worked too hard and have to endure too much. It needs a massive shake up from the top.