On my soap box again folks...
There's no need for me to be describing problems accessing health care with autistic sensory and communication differences. This is the one environment where I am singing to the choir, I know. All our experiences are different and mine will be along the lines of others' but unique in their own way. And I guess I'm lucky, in all other domains, my autism creates differences and glitches and problems to circumvent in an NT world, but also advantages, and I'm a happy little autie, really...until you put me in a health care setting.... then oh boy! I defy anyone who actually sees me in a hospital to be using swear words like "high functioning", lol.
Anyway, since my diagnosis (and battle to correct former misdiagnosis - another story), I have now spent practically two years of my life trying to get someone somewhere in the system to wrap their heads around my needs and tell me what the plan is. To date:
1) Adult social care - it took four referrals for them to assess. They assessed, acknowledged the need, but conclude this isn't a Care Act issue and refuse to help.
2) My dentist referred to the Learning Disability and Autism Team - who immediately refused because I don't have a learning disability - Not the Learning Disability AND Autism Team then, are they? - just the Learning Disability Team and btw some of their clients are also autistic.
3) They try referring me to mental health - well, this may be causing significant anxiety but that's the consequence not the cause of the problem, and MH are not there to go to doctors with autistic people and advocate for their sensory needs. (Don't trust MH anyway).
4) They have repeatedly told me to claim PIP and pay for support. Two failures at this now, with zero points for anything and a line that says "I can manage treatment and monitor health unaided" - they've got a door stop pile of paper with overwhelming evidence that I can't. Still we know how that one goes - it will go to appeal.
5) Some advised the a Continuing Health Care budget - nop! immediately bounced without assessment as not likely to meet criteria.
6) There are advocacy services which I have used for other things and are very good. But you have to wait a month for an advocate. Not much help in an emergency either and no good if I need after care. They aren't nurses.
Each agency passes me to the next until we have navigated the circle several times over. Meanwhile, I still can't get to and through a doctor's appointment, never mind undergo the invasive procedures outstanding for eons for want of support.
In the end I went to my MP. The MP wrote to the Minister. But "this is an Equality Act issue" said the Minister (no *proverbial* Sherlock!) "and information must be provided in an accessible format" (Hasn't understood the issue at all, huh! Not like I'm blind a you can print information in brail. I'm in shut down or melt down and can't talk at all!).
The MP also wrote to the commissioning group. Their response: There's the local Well being Hub for six sessions, they said (OK, they haven't understood the part about autism being a LIFE LONG condition, have they? Nor can they help in an emergency. Failing that, said commissioning, refer to adult social care. (Face palm moment). It was pointed out that they have already concluded it wasn't a Care Act issue. They said I should complain.
What's going on? If I were a wheel chair user, I wouldn't be told it was down to me to complain and campaign for a ramp to get through a hospital door!
So much frustration, endless days of my annual leave taken up with letter, forms, phone calls and meetings later, I still don't have the support to get through a Doctor's appointment, never mind any actual treatment.
But, hope on the horizon, I have today met with one person from the Well Being Hub who will try a few other things and I have now a promise (through the enquiries via my MP) to meet with the commissioners to work at improving the offer to autistic people.
Have I exhausted you all yet?
Now, I know that many of you experience some of the same problems I do in a health care context and that a small sub-set of you will experience most of the same problems I do. With that I'm a) just giving you an up date here. If I win my battle, maybe I win it for others too, and b) am opening myself up as some one all of you can feel free to have a moan at (in the tread or PM if you like) about their problems in this area. I'll be keeping notes of points and themes made I hadn't already thought of as I go forward.
I am acutely aware that when I start talking to people like Commissioners or Health Watch that I am representing more folk than just myself. So, feel free. If you need an ear to bash, bash mine! Meanwhile, I will periodically update you all in case something in my story helps you.
I'll hop off the soap box now...lol When oh when do I get to just go back to happy autie land and just obsessively crochet socks!?
