As the title says, I have technically been barred from accessing health care. I had a meltdown over the holiday weekend because I returned home after a rare day out and my neighbour started playing loud music. The out of hours GP asked social workers to visit me at home and eventually they agreed. BUT they arrived at my house before I'd left the doctors office. I then went all week feeling anxious and I could feel a meltdown coming so I made an appointment with my GP. Unfortunately she spoke loudly didn't listen interrupted..and I had a meltdown in front of her. I hit myself in the head about 5-10 times in 5-10 seconds and it was over with. I was told my behavior was worse than her 2 young kids and I left with no help. A letter arrived from the surgery manager saying....
Last year my very new neighbour raved for 12 hours every Saturday and every Sunday for 2 months. This caused so much anxiety I had to sleep on my only friends sofa for 2 months. This is all after previous neighbour issues and a lot of moving around/change. Being from Oxfordshire means there are few to zero professionals with qualifications experience and knowledge of autism...and I get no support from anyone when its needed. The person that wrote autism guidance for NHS england wasted their time because in my experience NHS Oxfordshire have no idea about autism challenging behavior and the triggers that might cause anxiety. And they have none of the great and helpful services written about by NHS England. And the local council staff are beyond clueless. And this leaves me and a lot of people with health and social care problems.
I have some support from one friend on a Saturday so because of the weekend ban imposed by the doctors I am now unable to access health care. How can this be legal. In the recent court case NAS helped with it was more or less ruled that an autistic kid can hit his teachers and NOT immediately get excluded from school if the teachers sat doing NOTHING except eat custard creams while the kid complained the environment was going to cause him meltdowns. SOOOO how can essential education be available to autistic kids who engage in challenging uncontrollable behavior but autistic adults can be excluded from essential health care ???? seems wrong to me !!! discrimination or breach of human rights maybe..
That sounds pretty traumatic. I know a bit what it's like: desperately wanting help and being obstructed, and them not even listening, has given me a meltdown in front of a 'therapist'.
From the letter you quote, it sounds more like a warning than being barred, GP practices aren't technically part of the NHS, but run by the GPs. You can still complain to NHS England or to the ombudsman. Even if you were barred from the GP practice, you're not barred from any other in the area, and not from A&E or walk-in clinics. It would be good if the particular GP had some training in autism.
Were you verbally abusive? Maybe what you said was also quite revealing.
The first people I would suggest would be your local Healthwatch who might know if the best thing is to mediate or just concentrate on the main problem,
Muddled1 said:they arrived at my house before I'd left the doctors office
That sounds like social services being too effective... they still haven't done what they were asked though.
You should be able to report the noisy neighbour to your council environmental department directly.
That is horrible. One of my main reasons for getting an official diagnosis was because I felt that I was effectively barring my children from healthcare by being autistic and I thought that being diagnosed may help.
Hi muddled 1, really sorry to hear your story, neighbours can literally drive people like us to leave. I had my fair share of neighbour issues a few years ago, an awful lot of young boys and girls all grew up feral, always outside but never playing, throwing rocks at each other, litter everywhere, destroying trees and hedges, and by worse was the incessant football deliberately being kicked against our walls and front door, the parents joined in, the housing association did nothing, the police did nothing as it was easier to shut me up than all of them.
Thankfully they have all grown up and no new hoards to take thier place, so pretty peaceful now.
So you say there is little to no knowledge or understanding in Oxfordshire of autism?
I don’t know the area well but know a few people who live there, they wouldn’t know one way or another, there are still many gp practices that have no training what so ever but must catch up as the government states clearly they should.
Problem is they aren’t governed specifically by councils.
What rough area of oxford are you, north, east, south or west, no address as NAS says not allowed to give personal information out on here.
Is there a possibility you could try a neighbouring area? Some folks on here are cleverer than me and might be able to look up which practices are trained for you. There was a list somewhere somebody put up.
I can’t do fancy links to posts etc.
I hope you get some help as a lot of the main issues are others being inconsiderate to others,
Take care and keep us posted on the outcome if you will.
Afternoon ! And apologies its taken about a month to reply. I don't think I even come back and take a look at this post after hitting submit but thanks for your replies. I'm in South Oxfordshire and no in my experience the doctors do not have any understanding of autism in this area. Neither do social services. There seems to be a lack of understanding everywhere in the UK though. Even the so called experts and organisations that supposedly represent us get too much wrong. Which I guess would go someway to explaining why there are so many isolated suicidal with autism in the community and why there are countless others needlessly placed in mental hospitals. I mean a naturally happy person can soon lose the will (and ability) to live in the real world if and when the people that are supposed to help just ignore ignore ignore...or offer inappropriate help. I would love for social services in my area to respond publicly to some of the emails I could post here...that they have ignored. Telling them you're going to sit in a freezing cold field on Christmas day rather than meltdown due to noise from neighbours got no replies. Neither did I'm going to smash my house and my neighbours house to pieces if he raves for 12 hours again. Nor did saying I have had a meltdown and injured myself and also accidentally wet myself. And so on and so on and so on and so on..
I have been mute for around 3 weeks now and I've hardly been leaving the house because its all stress stress stress at the moment. Literally wearing ear plugs 24/7 from January to April really isn't the best way to deal with noise sensitivity and inconsiderate neighbours having raves. BUT when left to find a solutions to these problems sometimes the simple and obvious options are the only options. its not like I can sound proof my house...and its not as if the council will give me a disabled facilities grant to make these changes. I cannot go to environmental health because they will likely say that the noise is only at weekends and not that bad....and not only that some of the sounds I can hear seem not to exist to others (but they do as often eventually proved!!)
Its nearly time for autistic shutdown and burnout anyways I think. The DWP are going to love it because it'll make taking my ESA benefit very easy for them. The yearly claim form landed on the doormat again recently and needs returning asap. I hate the damn things. They know that forms cause me serious difficulties anxiety and self harm. BUT they send them again and again anyways.
Least I have got a box of pointless dwp paperwork that weighs around 15kg to burn if and when they try freezing me (and starving me) to death like they probably have done to a lot of claimants than we DON'T know about. If you read just about anywhere these days there are a lot of deaths linked to dwp decisions that we DO know about. BUT I bet we don't get to hear or read about half of the problems people are facing due to benefit cuts and poor care/no care from the council. In the near future all the hard working folk in this country will become very aware of this universal credit benefit. Especially if they work part time and need to claim it
Welcome back, Muddled1.
I know just how you feel. On one of the other autism sites today, another member, with all the best intentions in the world, recommended that I get myself a mentor, apply to social services, and ask my GP for a mental health referral.
As I said to him. I have spent the last four years since diagnosis battling for those very things, and have been turned away at every opportunity, despite having a professional advocate helping me for much of that time. Due to local authority funding cuts, I now don't even have the advocate, and the next turn of the merry-go-round for DWP benefits is upon me yet again. Mental health services have known my problems for thirty years or so; their "treatments" have always achieved very little and are rarely adapted to the needs of people with long-term underlying conditions. It's hardly any wonder that I have so little faith in them. To add insult to injury, DWP take the attitude that if I don't receive any outside support, it must indicate that my disabilities are much more trivial than they really are; nice catch-22 there!
The guy offering the advice was shocked at what he perceived to be the hardships that I endure; walking for miles on lonely footpaths, often in the dark and in inclement weather, so that I can shop and visit friends without running up against problems caused by my autistic traits (aversion to public transport and crowded pavements, aversion to being alone in a little metal box with a taxi driver, and so on...) But, as I said to him, the process of trying to get help is far more stressful to me than the things that I want help with. My behaviour might seem maladaptive, but it is functional after a fashion. Living my life mostly within the radius that I can walk, walking whenever it is remotely possible, and avoiding the assistance of other people, however indirectly, seem utterly natural to me, and I have lived like this for my whole adult life.
Concern for what interventions and supports I might need has now taken a back seat; what I want more than anything are; relief from battling to get a toe in the door of support, relief from having my nose constantly rubbed in my most demoralising impairments, and relief from being treated as a fraudster, malingerer, or just an inconvenience, merely for daring to ask.
In terms of the anxiety which leads to the burn-outs where my self-care hits its lowest ebbs; my maladaptive, eccentric ways win hands down so far.