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Age of Autism Makes an Appeal to Scotland’s First Minister, Nicola Sturgeon

NicolaSturgeonOnce again Age of Autism highlights the disgraceful predicament of Andrew MacVicar and his family. Andrew is an autistic adult of 53 who is incarcerated and being forced to undergo medication with risperdal (a treatment for psychosis) against his will. Following his mother Christine’s harrowing account which we published two weeks ago she writes under the column today:

Just to bring this up to date. Andrew has now collapsed two days running and the hospital says it can find nothing wrong with him.

My son is terrified that he will die and angry that this is being done to him. The UN clearly states that this is torture.

This is human abuse on a high scale and we call upon Nicola Sturgeon to intervene to make sure that Andrew ‘s torment ends. Under new National Health Service guidelines Andrew might very well be protected in England.  We suggest it scarcely makes any difference whether Scotland is governed by a faceless, indifferent bureaucracy in London or a faceless, indifferent bureaucracy in Edinburgh.  NICOLA, WHAT ARE YOU GOING TO DO?

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Seonaid

Brilliant Fiona Sinclair - and Jenny Allan. Thank you both for your efforts. I have done likewise to West of Scotland MSPs:

Neil.Bibby.msp@scottishparliament.uk
Jackson.Carlaw.msp@scottishparliament.uk
Mary.Fee.msp@scottishparliament.uk
Annabel.Goldie.msp@scottishparliament.uk
Stewart.Maxwell.msp@scottishparliament.uk
Margaret.McDougall.msp@scottishparliament.uk
Stuart.McMillan.msp@scottishparliament.uk

Jenny Allan

Attagirl Fiona!! I have copied your e-mail to my own East of Scotland MSPs:-

Christian.Allard.msp@scottish.parliament.uk
Richard.Baker.msp@scottish.parliament.uk
Alex.Johnstone.msp@scottish.parliament.uk
Lewis.Macdonald.msp@scottish.parliament.uk
Alison.McInnes.msp@scottish.parliament.uk
Jenny.Marra.msp@scottish.parliament.uk
Nanette.Milne.msp@scottish.parliament.uk
Graham Dey.msp@scottish parliament.uk


I added the following extract from your February 2014 letter to the Scottish Parliament Cross Party Committee on Human Rights:-

"As parent activists, we do not find that there is a willingness amongst those charged with the formation and implementation of autism policy to listen to `missing perspectives`. The exclusion of our sons and daughters is mirrored in our own experiences of being treated like the `awkward squad` who will simply not go away nor shut up. This exclusion is as inhumane as the exclusion of parents from decisions taken on the care and treatment of their sons and daughters while they are receiving compulsory `treatment` in the mental health system, in spite of all official guidance or legal rights as guardians. To quote one parent:-
`It was heartbreaking seeing him suffer there for 12 years, locked up for hours on end in a padded cell, thrown to the ground and sat on by so-called trained staff and treated worse than a criminal`


Autism Rights is calling for these actions to be taken:-

1. The removal of people with Learning Disabilities and Autistic Spectrum Disorders (ASD) from the provisions of the Mental Health Act.
2. Equality of healthcare for people with autism.
3. An inquiry into the treatment of all people with ASD within the mental health system.

Given the statistical and regulatory black hole into which people on the autistic spectrum fall , it is impossible to ascertain the full extent of the abuses and discrimination being perpetrated against them, hence the need for an inquiry. Perhaps then we will get the chance to put forward our own suggestions for both the prevention and treatment of mental distress in people with ASD.

SOME INFORMATION ABOUT AUTISM RIGHTS

Autism Rights is established to research, lobby and campaign for the human rights of people with Autistic Spectrum Disorders (ASDs) in Scotland, in particular to campaign for the provision of appropriate health treatment, education, social welfare and justice.

The founding members of Autism Rights are all parents and carers of people with an ASD and were long-standing members of the now defunct Cross-Party Group on Autistic Spectrum Disorders of the Scottish Parliament.

We are the only national service user-led group in Scotland campaigning for the rights of people with an Autistic Spectrum Disorder and their families. Full membership of Autism Rights is open to people with an ASD resident in Scotland and parents and non-professional carers of people with an ASD who support our aims and objectives. We do not provide services for people with ASD, so we can speak up without fear of the loss of funding for services.


One parent summed up our feelings about `the system` - "It just seems to me
that, over the years, we have spent more and more money employing more and
more people to stop our children getting the things they need."

'EQUAL RIGHTS - NOT ENDLESS FIGHTS'
www.autismrights.org.uk

Angus Files

Hi Fiona I was just on the phone to Janette, but you have beat us to it WELL DONE!

Also the Mp for Christine's area,i believe can be copied below ,I don't have her direct e-mail

http://www.snp.org/people/philippa-whitford

MMR RIP

Fiona Sinclair

Sent today to my constituency and regional list MSPs (Members of the Scottish Parliament):-

Wilful neglect and ill-treatment of autistic adults in Scotland constitutes torture under the UN Conventions on Human Rights and Rights of Disabled People (UNCRPD)Fwd: Re: Andrew MacVicar
From: fiona sinclair
To: Adam.Ingram.msp@scottish.parliament.uk, Graeme.Pearson.msp@scottish.parliament.uk, Claudia.Beamish.msp@scottish.parliament.uk, Jim.Hume.msp@scottish.parliament.uk, Joan.McAlpine.msp@scottish.parliament.uk, Aileen.McLeod.msp@scottish.parliament.uk, Paul.Wheelhouse.msp@scottish.parliament.uk, Chic.Brodie.msp@scottish.parliament.uk
Date: Today 13:11:07
Dear MSPs,
This is to bring you up to date with the situation of families
of people with Autistic Spectrum Disorders in Scotland (ASD) and to ask you to do all in your power to stop the inhumane treatment and torture that is
permitted in practice by the Mental Health (Care and Treatment) (Scotland)
Act. Age of Autism is asking the First Minister of Scotland to intervene in
the case of Andrew MacVicar, and Autism Rights is backing that call - see
forwarded email below.

Autism Rights has campaigned for four years to bring the abuse and torture of
people with ASD to the attention of MSPs, and the abuse is ongoing. The email and articles referred to below concern one of the founding members of Autism Rights, who has made an immense contribution to our understanding of newer international medical science which has found immunological and metabolic disorders to be `co-morbid` to ASD.

The Scottish medical establishment, led by the corrupt self-interests of the
psychiatric establishment and those who are comfortable with the back-door
eugenics that go with this, continue to permit people like Andrew MacVicar to
be tortured by drugs he cannot tolerate, and refuse to take on board even
those improvements in policy and practice operating in the English system. The MWC have not used their powers to intervene to date, in spite of clear
opportunities to do so. Andrew MacVicar was sectioned, not for being a danger to himself or to others (supposedly the sole criteria for sectioning), but
because of his behaviour, which was deemed to be anti-social by his
psychiatrist. This is disability discrimination, because such behaviour is
encompassed within the autism diagnosis. Andrew's case is just one of a
number of cases that have been ongoing for well over a decade now. As MSPs, you would not tolerate such torture on people who have committed crimes - but you think it is acceptable to do this to people with disabilities who have never committed a crime.

Given that SNP MSPs voted only to review the current inclusion of people with ASD within the Mental Health Act, without any commitment of any description to that review, it is especially incumbent on you to stop this torture of a disabled person - because the way Andrew MacVicar and other autistic adults are being treated fits precisely into the UN's definition of torture. His mother fears that he will die. He is not even being permitted to take nutritional
supplements that can help to stave off some of the worst effects of the drugs he is being forced to take.

MSPs have sat for years accepting the fatuous assurances of public bodies like the MWC, who, as I exposed with an FOI, do not even publish a body count of deaths in the Scottish mental health system, which are at least twice the rate of deaths south of the border.

Autism Rights has always striven to be polite and to be restrained in its use
of language, where others have been much less restrained, but MSPs need to
stop accepting the fatuous assurances of those with conflicts of interest and
who are in denial of accepted medical fact. Even Andrew's psychiatrist admits
that the drugs he is forcing Andrew to take will shorten his life by decades -
but not a single MSP had the moral backbone to even mention this within the
debate on the Mental Health Bill.

Whilst we are still pressing the MWC to intervene, they show no signs of any
willingness to act and Andrew may not even survive until the next Tribunal, as
previous medical tests that showed lung damage and heart irregularities are
being ignored by his psychiatrist. A request by his mother for a change of
psychiatrist has not to date received a reply - such a request is possible
under the English system.

It should be noted that this psychiatrist sectioned Andrew AFTER his mother
was encouraged to make a complaint to Ayrshire and Arran Health Board and the GMC about his conduct by the complaints department of the Health Board. The Emergency Detention Certificate was only actioned AFTER the complaint had been submitted and replied to by the health board.

The MWC has turned down Autism Rights' request to them to hold an inquiry into the situation of people with ASD within the mental health system, so we are now preparing a complaint to the United Nations as regards the absence of any practical safeguards within the Scottish mental health system regarding the human rights of people with ASD. This is in addition to the `shadow report` that is currently in preparation.

Hoping that at least some of you will be prepared to actually read the
documentation that Autism Rights has produced and to act on it. Please get in
touch for further information, should you need this.

Yours sincerely,

Fiona Sinclair
Autism Rights
www.autismrights.org.uk

MWC = Mental Welfare Commission for Scotland

Reference their report, published because of the embarrassment caused by my FOI on deaths:- http://www.mwcscot.org.uk/media/175822/death_in_detention_final.pdf

Researcher

This is absolutely horrifying. If Andrew is ever released, I hope he and his mother are able to flee the country and gain sanctuary somewhere more enlightened, maybe Finland?

Seonaid

John

Your account of the NAS conference serves further to illustrate the lack of knowledge of how these drugs work! It seems to me that such treatment is based on a ‘suck it and see’ basis. Unfortunately when bad reactions occur, and they do, they will not be acknowledged. How can they? First do no harm etc. At best patients are told it’s ‘non-response’.
Is there any other branch of medicine permitted to prescribe potentially dangerous drugs without carrying out a single test? I don’t think so. In fact Dr Barry Durrant-Peatfield was struck off for doing just that – though in his case he was actually helping patients! We live in a queer world.
There are so many potential physical causes of unusual behaviours or other symptoms in autism, it is imperative that psychiatry takes on board the co-morbidities mentioned by Jenny Allan. Hypothyroidism – sometimes subclinical, seizure activity –sometimes subclinical, acquired mitochondrial dysfunction and of course that ‘bête noire’, the gut problems. Every clinician who is treating persons with an ASD, should be issued for compulsory reading, Medical Comorbidities in Autism Spectrum Disorders.

http://treatingautism.co.uk/resources/research-science/

Seems we are light years away from that happening.

John Stone

Seonaid

You are right to cite the Maudsley debate: it shows that there is by no means any professional consensus about the medications. The madness lies with the profession. Fifteen years ago I went to a National Autistic Society conference at Imperial College where a psychiatrist from Great Ormond Street children's hospital maintained that there was no gut brain connection. He had no answer to the problem that his oral medications could not affect the brain unless there was such a connection - he just smiled uncomfortably. His case rested on a logical fallacy - it was completely indefensible as a proposition but here we are all these years on with these people still ruling the roost.

I can't remember what he said about risperidone. What he did concede is that any of these psychotropic medications had only very narrow and unpredictable benefits in relation to autism (which didn't stop him from prescribing them). While we don't know everything about Andrew's case it is very hard to see what circumstances at all would require him to be held down while risperidone was pumped into his body with all its very unpleasant known common side-effects..

I think somehow if you end up traumatising people rather than making them happier then the point of the exercise is somewhat lost.

Seonaid

This is outrageous. I am so sorry, Andrew and Christine, to hear what is happening to you.
It should be recognised [but seemingly isn't] that people with an autism spectrum disorder, can show many unusual and even dangerous side effects to psychiatric medication. They can worsen the autistic symptoms for which they are administered. To subject Andrew to a depot drug was extremely ill-advised. Depot drugs have a slow release action, and will take much longer to leave the system than an oral drug. This means that should a bad reaction be seen, the drug cannot be stopped immediately. Why are clinicians in Scotland not aware of this? How soon will the profession be educated in the pitfalls of drugging persons with an ASD?
There is clearly something physical going on here that is not being identified. Is a psychiatric ward best equipped to carry out investigations? Where are the specialists? Guidelines state that immunologists, toxicologists, genetic and metabolic specialists should be consulted. Where are they? Will psychiatry permit their involvement? Psychiatry is notoriously loath to include advice from specialist physicians outwith the profession. That wall has to be knocked down if Andrew, and other patients on the spectrum, are to receive relevant testing and treatment. The culture o f drugs and nothing else, has to change, especially in this era of enlightenment, when psychiatric treatments are under the microscope.

http://cepuk.org/2015/05/15/maudsley-debate-cause-hope/

http://cepuk.org/2015/06/11/london-18-sep-harm-good-confronting-psychiatric-medication-epidemic/

And what happened to The Triangle of Care – introduced in Scotland last year?
I hope someone, somewhere can intervene and stop this patient’s suffering.

Jenny Allan

Thanks for this AoA. I have been campaigning in Scotland for years on a number of health issues, including hospital superbugs, MMR vaccine, Gardasil and citizens' justice issues, including, what is supposed to be an 'impartial' Ombudsman.

I have found Nicola Sturgeon to be unwilling to personally address any issues of public services incompetence and failures, including education, policing and health. Instead she employs an army of highly paid 'spin doctors' to try and convince us everything is just 'hunky dory'.

Like the late former UK Prime Minister, Margaret Thatcher,(a person Nicola publicly abominates), Nicola enjoys playing statesman on a world stage, whilst ignoring serious issues at home. She recently visited the US and China. During the recent Scottish Independence Referendum campaign, Nicola flitted around in an £8000 a day helicopter with her image emblazoned on the side, (nicknamed the Stugicopter!) I expect this show to be repeated during the forthcoming election next May.

I can empathise with poor Andrew and his parents. To put this bluntly, we are literally 'banging our heads against a brick wall', trying to convince a scared, conflicted, medical community about autism co-morbidities. As for the politically financed and directed 'Health Protection Scotland' Government department. I don't want to swear on a public forum!!

Perhaps an appeal from the US might help Andrew. Certainly a personal intervention from Nicola is badly needed, in this and other cases of injustice in Scotland. Nicola wants and needs our votes, but she is not minded to listen to representations from her own people.

John Stone

The hospital can't find anything wrong with him:

"Common side effects of Risperdal include extrapyramidal effects (sudden, often jerky, involuntary motions of the head, neck, arms, body, or eyes), dizziness, tiredness, fatigue, fever, weight gain, feeling hot or cold, headache, dry mouth, increased appetite, restlessness, anxiety, sleep problems (insomnia), nausea, vomiting, stomach pain, constipation, cough, sore throat, runny or stuffy nose, or skin rash."

http://www.rxlist.com/risperdal-side-effects-drug-center.htm

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