Published on 12, July, 2020
Hello all,
I am new to this forum and I am posting on behalf of wife who has later in life been diagnosed as autistic.
I am reaching out as I am astounded as the NHS's apparent lack of reasonable adjustments when dealing with the health needs of an autistic adult.
My wife has recently been informed that she will have to have a series of outpatient operations in order to remove some precancerous polyps from her colon. She has had two so far which have left her in a really uncomfortable state, which resulted in an A&E visit and another to a walk in centre.
The issue she is having is that none of these medical health professionals are understanding of her autism. I don't think it has even been flagged on her notes. They seem to lack a basic understanding hat she needs to be fully informed as to what is happening, come up with a plan of action and provide some aftercare etc.
The reaction to this seems to be a blanket response of "we can't or won't do that."
I guess I am reaching out to ask if anyone can help on how best we can advocate for my wife as an autistic adult and put across what she needs? Are there any charities that could assist her with this or procedures to follow?
As it stands, there's the risk she won't continue with these procedures as she is finding the whole thing upsetting and no one is accommodating.
Any advice would be much appreciated.
Thanks
This sucks, and it depends a lot on the are that you are in as to what is set up.
My area (BANES, Bristol, South - Gloucestershire, and North Somerset) has a system known as a 'hospital passport' which is both on the systems in the local hospitals, and I have a paper copy to give to clinicians. The learning disability team also covers autism and in the past for me went ahead of time to explain to the clinician doing my ultrasound what my autism meant (I really can't deal with gel textures) and how she could help and I ended up having extra time so we could do it a bit at a time with breaks to do major stimming.
This is what a well set up system looks like. Most places in the country do not look like this.
What I can suggest is stuff similar to hospital passports, get a written statement of needs, maybe see if GP can help put NHS header on it? Contact before hand every time and ask it to be put on the notes for every appointment individually. See if your hospital has a learning disability team and if they could help?
Most importantly, put things in writing and keep pushing. It is very difficult, but you will find some clinicians who can help, if only because they are familiar with autistic people and do it off their own back.