Published on 12, July, 2020
Thank you to all of you who responded to my last post.
On a personal level, it's comforting to me to know I am not alone in experiencing these problems. Having been called "delusional" for my medical anxieties in the past by mental health, it is nice to know they are anything but.
On a practical level, I was hearing a number of things in that discussion largely around how to access GPs etc and the absence of reasonable adjustments to communicate with them etc. Clearly, there is a need for a huge amount of training in this regard. There are further issues with respect to the physical and psychological misdiagnoses and unhelpful or inappropriate treatments sometimes arising from professionals' ignorance.
I have also dug into the helpful links provided by Autonomistic on Autistica's work to progress the issue of annual Health Checks, akin to those offered to people with a Learning Disability.
This post is specifically about advocacy.
Given that so many of us have difficulty in self-advocating in medical environments, to the point of not even getting through the GP's door and past the receptionist to self advocate, what are our thoughts specifically with respect to a service to help us get into the surgery and communicate with the GP. (Email can do a lot, but regrettably we can't be physically examined by e-mail. We have to go in sometimes!)
My ex-husband who was a nurse used to advocate for me. He could approach the reception desk for me, make the phone call for me, intervene and explain what the problem was when I could not find the words, explain what was happening when sensory overwhelm was pushing me into shutdown or meltdown, negotiate reasonable adjustments for me, even made medical decisions for me, when I could not.
Without his help now - I'm stuffed. Can't get any health care at all.
It seems to me that what is needed to plug the gap for those who don't have a family member to step in, is some sort of autism expert service embedded into the NHS to advocate even at short notice in emergencies. No such service appears to exist at present. I've been trying to find one for two years. Adult social care won't help, existing advocacy services don't go to GPs appointments with people and it takes weeks to get an advocate anyway and the Learning Disability and Autism Team are only commissioned to be doing this for people with a learning disability.
So, do you think this is a good idea? What would such a service look like to you? What would you want from it? Would this make the difference between getting to and through an appointment for you?
In theory, all NHS staff should have completed mandatory Autism and LD Awareness Training. Despite it being a legal requirement, many authorities have not provided this training for all their staff, and with the many other problems the NHS is facing, the law is not being enforced.
Hospitals have the PALS service that might be able to help. GPs are independent contractors, but you might be able to ask the Practice Manager if they can help you. There are probably independent advocates, either volunteers from local charities or professional advocates, but it would be expensive to pay for an advocate for a routine GP visit, say. (As an Independent Social Worker my starting rate is £50 per hour, so I doubt that a GP would hire somebody like me to sit in on a routine appointment.)
LongFerret You say "They illegally took away my consent and put lies in to my records, no-one cared that they broke the law, what else can they do...??" Basically, a clinician may treat without consent if the patient is unable to consent, e.g. if they are unconscious - this is part of the Common Law. Treatment without consent for a mental disorder is possible using s.3 Mental Health Act 1983 - this requires assessment by a psychiatrist and the agreement of the nearest relative or an AMHP, and there are rights of appeal against detention. The third example is a "best interests decision" made under the Mental Capacity Act 2005. (In all cases I am talking about England and Wales, the Scottih legal system is different.) This is where a clinician decides the patient is not able to give informed consent to treatment. In some cases a Deprivation of Liberty Order is needed, which involves a mental health professional, a Best Interests Assessor and consultation with a family member or carer. [This is a very over-simplified explanation of some very complex law ... and certainly nothing herein should be construed as legal advice. That's the disclaimer covered.] The point is, there is always a legal remedy - appeal to the Mental Health Act Managers, Mental Health Tribunal, Court of Protection etc., and legal aid is usually available. The general rule is that mental capacity must be assumed unless and until the opposite is established.
Patients have a right to see their records under the Data Protection Act 2018 and GDPR, and to have any errors corrected. Of course, if a clinician records an opinion that you disagree with, this does not amount to an error, but in some cases you may record your disagreement. There is a getout clause that allows a cliniciam to withold information if s/he considers the disclosure may cause you harm, and confidential "third party" information is also restricted. Again, the law can be complicated, and you should seek qualified advice.
The system is not perfect, it can be bureaucratic and slow, and is certainly confusing at times, even to professionals. Often there are institutional pressures to "close ranks" and avoid blame. Using the various complaints procedures can be exhausting and frustrating, and the outcomes are sometimes just an insincere appology. Occasionally a regulator may find against a clinician and impose sanctions, but the threshold is very high. Medical defence barristers are usually pretty good.
Ian said:In theory, all NHS staff should have completed mandatory Autism and LD Awareness Training. Despite it being a legal requirement, ma
Its that simple. But why are we all, and there is a lot of us who are being denied the opportunity of understanding what is going on with us? I had no idea i was autistic. But it now all makes sense. Maybe its because i am autistic that i didnt know i was autistic? I didnt know i was different. One psychiatrist said ....thise people out there, do you think they feel any different to you? I thought yes, but he said they dont.
We are taught to respect people. We turn to the professionals, respect them, but we are not being respected. For many this can result in being reluctant to ask again for help.
This is clearly a very popular topic. It does feel like bullying, being treated like we are not worthy of the truth. This on top of our feelings of not being understood is very damaging.