Published on 12, July, 2020
Dear All,
As a parent with teenager with Autism and also my self living with Autism after many years I was misslabled.
With the announcement of the NHS new plan, I am really scratching my head in confusion is this even real. Because day today experience allot of barriers in trying access basic health care within the NHS, but not just for myself but also for family. Experences so many problems like, the GP surgeries put their needs of their operation before the needs of ASD patient, not offering ASD friendly enviorment and is pot luck finding a surgery that is sympathetic to ASD needs.
Non existent support before & after diagnosis and the only way I got support, because I ended up in hospital for four months as just gave up living of trauma of whole experence. Getting the referral for the Autism is a horrifically long waiting list and getting on it even worse as very little trained to spot ASD in the first place within the mental health service. It like told waiting list is ten months for assessment, but it more like the NHS is like cooking the books, as have go through months and months of waiting just to get on the main waiting list. So take the waiting list and admin time I been waiting 16 months. Only reason I suvived the waiting list as already have someone advising me to sef care with Autism.
As a parent it like climbing the tallest mountain biggest challenge in my life in supporting a young adult with ASD. On the way up finding all the problems of non existant support and as parent completely organise everything and then I become really pushy parent, because support slowly melts away with good intentions, with no action and as a parent have keep the pressure on. Also have experence major trauma of bullying from professionals as soon blame you as a parent for child is failing to thrive not understand child has autism. It only when fight back as a parent to get the diagnosis that services went to bed your helpful friedcwithout saying sorry.
I am concerned as spent a life, where faced nothi ng but good intentions, lived like I was invisable, then suddenly NHS has a big plan, it all only to be fixed in one go. I am struggling to believe this is true and written my experences what like live with autism not because I hold grudges to anyone.
All I know at the moment is I work to exhaustion as parent and find times out for myself.
I hope it going to happen with the new NHS plan I proving things as could not even worse, can only wait and see.
Is it just me, is this a common experence of lack of support with autism.
The NHS have years of experience of cooking the books. Like time on waiting lists. And targets.
I remember my mother being referred to the eye department at the local hospital. The official target was that people shouldn't spend more than 6 months on the waiting list for the first appointment. She was placed on a waiting list to get on the waiting list. There was no official target for this 'pre list'. After 4 months she was offered a place on the real waiting list. And we had to confirm that she wanted to go onto the real waiting list. Then a 6 month wait on this real waiting list.
Total waiting time to be seen by a hospital consultant 10 months.
I could not agree more the NHS on targets and waiting list can be seen as manipulating and frustrating for patrients. When situation saying it only 10 months to wait for the patient, to publish waiting times across the UK stating this, but leaving out the finer details.
In reality that waiting time is only when your on the main waiting list itself, and not all the mini waiting lists like referral time, acceptance of offer, filling in treatment questionnaire posting it back before even get on the main waiting list. It like when in hospital, been referred to ASD assessment, but they will not start processing the referral when i have left hospital even that given a due date to leave! Its really irritating because they put you through all this multiple hoop jumping over many months, then only give you two weeks accept the offer and mail man loose the letter, back going to ask for referral.
i would hate for a situation the NHS started opening a shop, hang on they did, it is the Dead Parrot from Monty Python. The Parrot not dead it sleeping, who are you trying to kid, its dead!
My problem there is virtually no Autism assessments within my local authority so its a snails pace Olympics! These fast speeds I cant cope with as too fast for me to cope with!