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?
Oh God! You sound completely traumatised by this. Anything I've been through is clearly chicken feed by comparison.
Is there any possibility you could get some non-NHS trauma therapy. I don't mean private. There are some charities who do this, charging on a means to pay basis i.e. they do some of it for free. As they aren't a vested interest, something like that might be a safe place to go.
But I know there is no healing quite like justice and the knowledge the malpractice has stopped for other people's sake.
I'm so sorry you've been through that
Thanks. CHCs were abolished in England in 2003, although they still exist in Wales. There are PALS in hospitals, but they are "owned" by the trust. They say they advise on complaints. They advise on procedures and can arrange informal mediation, but they do not act as advocates for patients or do what I would call an investigation.
Hey Ian, thanks for your input, forgive me, I may not have worded it very well, what I meant was, when I said at fault, it can be assumed that the patient, me in this case, was at fault, in so much as 'not having capacity' for example or one of the other consent waivers, I know there are exceptions to consent, but my case was absolutely not one of those incidences.
It was downright shameful, unethical and dishonest especially given the circumstances, there was a long backstory to what happened, as there often will be. They didn't just take my consent away suddenly on a whim. I had actually withdrawn consent and they accepted this, and then came back to renege and screw me over. I can't mention the specifics, but one high up person had a big stake in making sure I was crushed and my case was buried (due to some other bad press). No regard for the damage done to me and my partner. They also threw a previous (nice caring) doctor under the bus in order to do it, trashing their reputation, (they had since left the NHS so they were fair game). They were prepared to go to any lengths.
'Medical mafia' I can certainly believe! Three of the people I encountered have since had promotions!
It haunts me every day. I have had sleepless nights knowing that a number of people are still in that HB (or a different HB far from here that I know of), doing serious harm. And I worry that my complaint and everything that happened meant they could go on to make their abuse more 'robust'. In other words, hide it better, I have no doubt, none, that they have harmed and are harming other patients, and likely have it in for autistic patients after me. But I had to accept there was nothing I could do. I was a scrawny minnow surrounded by sharks.
Your input was valuable. I asked the CHC for help at the time (or whatever it was called), but they basically gave all kind of technical excuses for not getting involved in 'medical decisions', it seemed dubious. It's a lonely position to be in making a medical complaint.
I think in this day and age, most people are fearful of rocking the boat. People need to know their rights yes, but your life becomes all about that and it can go on for years when you have to bring them in to play, (at the sharp end) it's exhausting living under that cloud, especially if it's a legal battle. To professionals it's just another job, another case, even a professional 'challenge', but to the patient everything is in ruins, it consumes every second of every day (and night), for however long it takes. It's akin to a jail sentence, one where you fear you now have no healthcare at all, as they now 'have a reason' to hate you and deny you even basic help. When they manage to bury you, you never escape that jail sentence, you have to live under that cloud from then on.
I felt suicidal again this morning, I thought I'd made a mistake talking about this, it's immeasurably stressful. So thanks for coming back to me and elaborating on a few points. You are clearly a good person.
You know what they say, nothing can change until the old order have all died off!
I spent fifteen years working for Community Health Councils before they were abolished, many would say because we were doing too good a job in holding clinicians to account. I have heard the phrase " medical mafia" and it is not far wrong. Certainly, there are clinicians who appear to believe in omerta, and I have seen decisions by Medical Service Committees that were definitely perverse, to put it politely. In one case I was presenting I got a distinctive handshake from the respondent's barrister before the hearing, if you get my drift. So yes, strange things do happen. The cuts in legal aid, excessive filing charges demanded by the courts, and some procedural changes make litigation far more expensive and complicated.
I am sorry if it sounded like I was blaming you ... the point I was making was that patients need to know their rights and be assertive. I also did some of my social work training on a mental health ward in a major London hospital, and some of my senior colleagues were not willing to "rock the boat" by challenging consultants. I hope the current generation of social workers will be more open to speaking truth to power.
There is also a realisation that covering up errors leads to further injuries, and the potential for massive compensation claims. The recent Letby case shows how fear of reputation damage can result in failure to act on abuse. There is now a move towards "no-fault reporting" similar to the way that "near misses" are reported in other industries, but it will need a major cultural change. I think the current generation of medical and nursing students would be open to change, it is the professional hierarchies that get in the way. The ghost of Sir Launcelot Spratt still stalks the halls of the great and good and the old boys' network still prevails - witness the recent report on the sexual harassment of female surgeons.
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.
Hi Ian, I'm familiar with the law regarding consent, and it was none of the points you mention. You speak as if I was somehow at fault - I was not, I was a victim of a nasty prolonged assault. They just broke the law, simple as that and got away with it, I'd already withdrawn consent and there was no legal basis to do what they did. And I know about the get-out clause. To cover up lies they used the 'in my opinion' card, it was clearly horsesh*t, but again, they got away with it. And yes they closed ranks big style.
The things you speak of are the 'theories' of the thing. In practice, people are not honest, not doing the right thing, and yes, abusing people as there's zero accountability. It would be nice if people did do the decent thing and abide by the law. But that's a far cry from the reality of life.
People can't just be litigating at the drop of a hat. I looked in to it, it just wasn't possibly financially, or the cost to me personally. I would not have survived.
Not me, not my son. Is there another Ian out there?
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.
not brave enough! too fearful of repercussions... Even when things are brought to light, health staff are not sacked, don't face criminal charges, etc., they are not even identified publicly unless they've murdered a hundred OAPs or babies. Everything is in their favour. 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...?? it scares me rigid.
This stuff scares me too. Have you thought about writing about your experience. Often media can be the best way to blow open bad practice when the services themselves will not take responsibility or put real energy into service improvement.
The whole thing is grossly unethical Dawn, and that's being polite, there are lots of staff with an axe to grind taking it out on vulnerable patients who are an easy target, I do think there is an industrial scale problem with abuse. I fear for the future, I really do
It's common as far as I understand, for autism sufferers to be misdiagnosed with really damaging personality disorders. You've got to ask yourself how many folks are walking around misdiagnosed and having to wear it and suffer the consequences?
They pretend it is independent Tulip. It isn't though. The system is corrupt. They will nearly always side with the HB to save the HB money. It stinks
I too have contacted the ombudsman about my brothers treatment from thr CMH service. Similar to the concerns that have been raised here. I will share the outcome x
My abuser and some very high up people in the HB tried to stick me with a personality disorder, they also tried to block my autism diagnosis (amongst other things), both failed ultimately but I was left with PTSD. It was very very scary how corrupt it was, I began to get heart problems due to the stress and now have a number of serious health problems as a result, to be honest I don't know how I survived - by the skin of my teeth. I don't trust medical staff as far as I could throw them. It makes my heart pound in my chest just thinking about it.
You're dead on there Autonomistic, abusers do make a beeline for psychology etc., I've seen it time and again. I'm sure lots of them are bona fide sociopaths. Sorry about your relative, the problem is that PDs are big business, there are lots of private facilities trying to 'treat' people with personality disorders (invented fictions) as in-patients for huge sums of money.
Let's hope so. I have a complaint lodged with the Ombudsman.
They corrected my record but have acknowledge no responsibility for the lack of protocol or information given to me.
I'll let you know how that one goes
Folks, I believe this is a whole other discussion, but a VERY important one.
I'm exhausted with it but have to fight so others don't go through this.
This is worthy of a TV documentary or a research piece.
I'm sorry you've both been through this too.
I did get my diagnosis corrected, but only by shelling out on private psychiatrists and psychologists with impeccable credentials in both PDs and Autism and inviting them to grill me for PDs.
Not everyone can afford that.
I'm sorry to hear of the truly terrible experiences suffered by you and Dawn. The more I hear stories like this the more I believe that these are not isolated incidents. The bullies and abusers seem to be drawn to a career in mental health services, safe in the knowledge that their victims are less likely to fight back and unlikely to be believed if they do.
A relative of mine also had a personality disorder diagnosis wrongly added to their records without their knowledge. They only found out years later when accessing medical records for something else. It might explain why they were constantly disbelieved when truthfully describing their sensory issues. The subsequent treatment they endured under the 'care' of mh services was a trauma that neither of us will ever get over.
LongFerret said:The ombudsman is just there to back up HBs and rarely comes down on the side of the patient unless it's a really obvious scandal like taking out the wrong kidney. In my
Really? I thought that they were independant?