Unwise Decisions, Isle of Wight & Jack Smith

Yesterday was a very confusing day if you happen to be the parent of someone with autism and learning disabilities. I had quite a busy day but several times popped into social media to follow three events that were unfolding. I went through a kaleidoscope of feelings from irritation, frustration, hope to deep sadness. 24 hours on and those same feelings are still sitting firmly in my melting pot.

It was Mental Capacity Action Day and a number of professional groups had joined up to focus on Principle Three – Unwise Decisions. Subsequently, Twitter was awash with photos of people holding up cards with an unwise decision they had made at some point in their lives. There were some very funny ones and it was good to see people able to send themselves up. But there was something about the exercise that took me back to last year’s NHS Q Initiative and the “writing on your underpants” exercise. A jolly jape, possibly raising awareness of something much bigger but how does one move from underpants (or unwise decisions cards) on to the more important stuff? I didn’t see one card that had the unwise decision, “I didn’t authorise additional support for the family during the crisis, so the dude ended up in an ATU”. Or, “I didn’t challenge the contrivance of a mental health section, so the dude remained in an ATU for six years”. I know. Call me a party pooper but I can’t see how the jump is made from an awareness game into something more valuable for the people the MCA is intended to be for.

At the same time, a safeguarding conference was taking place on the Isle of Wight. Two of the guest speakers were Sara Ryan and Graham Enderby. There was life tweeting of the event. I’ve had this conversation with both Sara and Graham before but it left me questioning again, how does one make a leap from hearing a horror story at a conference to changing professional practice. Does hearing a family member tell their story cut the mustard in terms of raising awareness of the MCA. I sometimes wonder, especially with Graham’s and my story whether the audience are cushioned by the fact that the story has a happy ending. Hopefully without sounding too arrogant, I think both Graham and I are good speakers – we can take people on an emotional journey and people will rage and laugh and cry. But the stories are in the past and that creates a protective distance. I hate to think it but from time to time, I wonder if it is the same with Sara’s story too. I wonder as more horror happens post inquest and Mazars, another cushion appears. The bad guys become so obvious and the focus that we can forget the obvious question for the audience of professionals – what the bloody hell was Connor doing in an ATU? Where was his Mental Capacity Act? Where were his Human Rights? I hope this isn’t too jaundiced but as I say, it pops into my head every now and again. Whatever you hear in Harry’s, Steven’s or Connor’s stories, the narrative is awash with unwise decisions that wouldn’t make their way onto a held up card.

And then the killer. Eve Smith got back from her son Jack’s review meeting and posted on Facebook that his Mental health section has been extended for another two months. No matter that he has been having weekend home visits for several months now without problem (apart from the distress of going back to the ATU). The section has been extended because there is nowhere for him to go. Whilst the CCG are footing the bill for the ATU, the LA are dragging their feet about setting up a home support package. The plan (!) is that Jack will get his own flat but another of the delays is that they are unable to find suitable providers trained in autism. (There’s a simple answer to that one – get some people who are able to be Jack trained). So, in the meantime, the section is renewed with no concrete plan for the next two months, increasing the possibility that in two months time, it will be extended again. Later in the evening, Eve posted about her nightly phone call from Jack. To deal with his distress over the bad news, the staff had given him extra medication. Medication that leaves him disorientated, confused and incontinent. Where is Jack’s MCA?

A couple of months ago, I posted the idea about assembling 3500 Ninjas to try and spring the 3500+ people from ATU purgatory. Ninjas with the MCA and Human Rights embedded into their capes. The outcome reminded of that episode of The Good Life when they collected their first harvest. The episode starts with Tom and Barbara in the pub and all the pub regulars pledging their support to help gather the harvest. By the end of the episode, Tom has done his back in and the garden is a quagmire after a bad storm. All the pledgers have disappeared leaving only Jerry with a broken leg and Margo in a yellow windsheeter pitching in. I got 82 Ninja pledges. That was a good start. The MCA in action. But nothing since. Dreadful films like the one Leo Andrade took of her two sons having a cuddle with the iron gate of an ATU between them don’t seem to be enough to rattle the necessary cages. I don’t know what it takes.

Then again, I am open to the probability that the Ninja plan may have just been a shit idea.

I don’t know how to join the dots. I don’t know how to move from people holding up cards about the unwiseness of having a fourth pint in the pub to getting Stephen Andrade’s human rights respected. I’m beginning to think it may be impossible.

In the meantime, I’ll hold up another card. This card has a photo of Jack Smith at his home visit last weekend enjoying a cooked breakfast:


And just ask again. What can the MCA Awareness day do for Jack?


Update 1.15:

Just heard from Jack’s mother that she’s been phoned by the Unit who have changed their “care plan” in response to Jack’s distress over yesterday’s decision. For the foreseeable future, all home leave has been cancelled.

I ask again. Where is Jack’s MCA?

36 thoughts on “Unwise Decisions, Isle of Wight & Jack Smith”

  1. What would be a good decision is that Jack stays at home, especially as all is going well. He then has a personal budget to meet his needs which will probably be 24hr support. As he settles back into being at home the family explore his future independent living, possibly his own home near to his family. This would be a good decision, a cheaper decision and a life saving decision. The parents have to be persistent in their wishes, its not easy because the LA’s don’t even know what a BAD DECISIION is!!!

  2. Reblogged this on danutag57 and commented:
    Nicely and accurately put state of unfortunate events.Thankyou for your writing to pinpoint what is happening. I Feel numbness and despair but it will change for better-The Phoenix Will Rise From The Ashes!

  3. I didn’t take part in two events yesterday but I sat very closely by the phone waiting for news of Jack. I had a telephone conference with Nina ( gagged) and that situation that we all know so well just seems to be getting worse. I’m seeing Lynne, Chris mum ( partly gagged) tomorrow. She doesn’t know whether she will ever really get him back now after all the trauma, I listened to Sara O ( gagged) talk about how the SS are going to fight a Judges decision in her son’s favour all the way. Yes respinded as everyone should to the horrors of Leo’s lad ( tried to gag) and know that Deb Evans is crying every day( gagged). Paula is on the floor hardly holding her head up waiting for Thomas inquest. ( was gagged) . I haven’t a clue why people aren’t interested enough to demand this country rises to defend everyone. I don’t think it’s really understood. So Mark I think a wanted sign for ninjas to fight the wrong and a massive social media poster campaign involving every organisation and person we know asking for one person to stand up for another one. I actually don’t know what to do? Clutching at straws to help as just a fellow citizen to my abused fellow citizens and a parent. But see whose gagged! We need to be the people that stand up and be counted.so they don’t fear people. Complying gets you nowhere. Sadly people learn the hard way but they are sat on and shut up with threats that put the fear of God into them. I’ve heard them!
    New people telling us their horrors every day.

    1. In this situation people are at fears end, further threats have reached their marginal utility.
      Then its time to say no.
      “In the child or persons best interest” Heard that one before.
      Any reasonable person can see that what’s going on is clearly not in a persons best interest, when it mirrors Guantanamo Bay.
      But we all know whose “best interest” is being served.
      The Law is there to protect people not harm them.
      The Law in these situations as any reasonable person would see has clearly been perverted by fettered discretion.
      This perversion needs to be criminalised.
      So we need a register of those personnel involved in this type of activity.
      Volunteers would be welcomed to keep a record of those personnel involved who threatened their situation, in order that a National Register could be compiled.
      We would then be able to offer these individuals ADR in order that they had the opportunity to change their fettered discretion.
      Affected volunteers would be welcome to join the ADR compliance network.

    2. As you say, all are gagged in some way, including apparently all media.

      Why ? On what legal basis?

      We are lynched by a mob. It is like the wild west

      Whilst the government/ LA, paid by us, make huge sums out of abusing, torturing, even killing our children, illegally.

      And, are setting up a future income from their lifetime encagement, in large pens, medicated to make as much profit as possible for venture capital. .

      3 a day, or more, I presume, are still dying, and, there is no duty to investigate the deaths, and, then when they are, it appears all die of ‘natural causes’.

      Quite a scandal. In fact, must rate as the worst in the modern history of this Country.

  4. I love the story of the Ninjas, as drama or fantasy is always good to inject into the thought process, rather than only sitting around a table of MDT professionals which can make you feel like unliving.
    My daughter made up a story about her brother digging a tunnel out of the ATU a bit like Colditz, or putting up a zip wire to our house in the middle of the night as the nurses slept, and we used to come up with all sorts of amazing images of him and I wanted her to write short stories as she’s funny, and always made him laugh. We used to cry and laugh because stories help.
    Things got worse and I won’t share that here, but we will pull him up however we can.

    There is (also) nothing worse than false optimism, Christopher Reeves said, and it took me a long time to understand, as I think it doesn’t mean you shouldn’t hope, just don’t assume it will all just improve by itself.
    But we are programmed to believe in our children, even in bad times, ‘in sickness and in health’, and they feel this faith, without words. We can’t expect people who aren’t biologically programmed to care as we do, to do all the work. We must be the care managers and deliverers too.

    Interestingly, I once visited a care home set up by a commissioner who didn’t like the homes he was having to place people in, so he decided to do the job himself, and it had an amazing ethos and beautiful environment, and I honestly wanted to move in myself. It wasn’t in the right area for us, sadly.
    We need action men (people) like him, work with them, or do the job ourselves if we set up local groups, build homes or renovate existing buildings; always close to families, always having staff trained by family, always accessing the family home as any family member would, is the only way.

    LAs can’t think of solutions by themselves, and my son’s GP said that society isn’t really a caring culture outside of families (evolution designed families to care, even though there are some good carers out there), so we need to start something.
    Despair is part of the process, but unity and working together is what we haven’t done yet possibly.
    Why don’t we become a national specialist housing association ourselves and start creating homes in the community ourselves, with long term lease agreements, or special mortgages.
    My Safe Home was started by one person, and so we can start something similar.

    Steven Bubb, and any commissioners reading this site, or others, can you please make contact with us?

    1. agree with every word you have written, everyone who by necessity needs support should be able to manage the support elements of their unique lives in and from their own or shared home (if preferred ) and then perhaps something of the feeling of faith without words you describe can linger when new faces replace family members. I have limited experience with Mysafehome and hardly anyone I have spoken to has heard about home ownership for people with long term disabilities, a specialist HA would be an answer. There would always be the LA finger in the pie because without funding for support the tenancy/purchase can’t go ahead, sorely disappointed to have had properties deemed inappropriate by OTs for HOLD. Society isn’t a caring culture and false optimism hurts so much until you come to terms with the need to take on the lion’s share of responsibility until your last breath. I know some middle aged adults with severe learning disabilities/epilepsy and autism who blissfully live at home, their ageing parents tenancies will not be transferred to them . Something other than despair and fear for the future has to be possible.

  5. Sorry I forgot to say, I’ve met really passionate doctors and nurses, angry with the system, only 3 weeks ago. I gave a talk, and was crowded with professionals at lunch who wanted to talk, and 5 of them gave me their e-mail addresses. But these are the good guys.

    I also know a fellow parent, who runs a home, with lack of care for others adult children and large profits, and so it isn’t a clear cut division of parents and professionals. It never is. Just wanted to say that.

    But the MCA is used for people’s own agendas and definitely is a different law for our disabled, even if it didn’t start out that way, as best interests seem more often to be just for convenience of services to do what is easiest for them.
    It’s ridiculous that there’s more resettling or talk of economic migrants than disabled people, and I am of Eastern descent, by the way.

    1. It is not merely, as you say ‘fettered discretion’.

      They are acting illegally under both MHA and MCA
      As, there appears no separation of powers.

      The MHA tribunals, and COP judges and lawyers including the OS, often appointed, against parents wishes, to represent the disabled, are being dictated to by government, that for profit institutional provision, be it public, or private, NHS or HSCT, is always, in the disabled’s best interests.


      Often, illegally applying the MCA see above.

      The’ disabled’, is then removed, if MHA, it is by section, on the grounds they are a harm to others or themselves, and, that section is then illegally renewed, and effectively becomes indefinite.

      If MCA a s48 application by LA, removes, it is often merely, on the ground, that a person is suspected to be ‘incapable’, again clearly illegal, not a discretion, and then further assessments, gain the evidence, that he is incapable, and that removal, is in his best interests under MCA.

      There are no checks on the state of the ‘disabled’, once he is in for profit ‘care’ ‘treatment’, even if he in fact dies, it is still, in his best interests.

      As, the ‘disabled incapable, has no rights, nor, do their relatives.

  6. If it was a dog being kept in these conditions the RSPCA would sweep in take the dog fine and prosecute the persons concerned and ban them for life from any further contact with animals.The RSPCA would then re settle the dog in a loving family home environment.

  7. Personally I don’t think it’s the Mental Capacity Act that we should be focusing on but the draconian Mental Health Act because this is the legislation that is being used or rather misused to imprison adults with ASD/learning difficulties.
    My limited understanding of the Mental Health Act is that one can only ‘section’ someone who has a treatable mental health condition. Last time I looked ASD wasn’t a treatable condition.
    All of us Ninjas should head to London with placards and possibly paint guns and let Parliament know what we really think of their attitudes towards people with learning disabilities. Sadly, I don’t have a very good aim for hurling eggs etc but I’m willing to give it a go. I will start practising on a cut out of Cameron.

    1. Julie you are absolutely right. I have hands on experience of the MHA it is a reasonably good act, and does the best it can with MENTAL HEALTH PROBLEMS. My son was illegally sectioned in 2005, and all the proper safeguards were immediately put in place. He has epilepsy, which is a neurological disorder, Finola Moss writes about the scandal of putting learning disability and autism under the MHA. In the Court of Protection in 2007, under Mr Justice Charles, the Official Solicitor, acting as my son’s litigation friend, asked for a judicial review to get Martin sectioned. The Official Solicitor (and the judge) tried to over rule all the clinicians (doctors and psychiatrists) who insisted Martin was not sectionable. The Court held the 2005 decision that Martin was not sectionable. All these judgments are in the public domain

      1. Shirley sadly not – no longer do u need to have a treatable condition – that changed under New Labour – remember having massive arguments about this whilst working with UKDPC. No longer does the mental health condition need to be treatable or of THEAPUTIC benefit for the patient. This change was made during the noughties

        Why may I be detained?

        If you have, or are thought to have;

        1. a mental illness which needs assessment or treatment which is

        2. sufficiently serious that it is necessary for

        a. your health or safety, or

        b. for the protection of other people,

        3. and you need to be in hospital to have the assessment or treatment. And

        4. you are unable or unwilling to agree to admission.

        If you are on a section 3, that is for treatment, then the treatment you need must be available at the hospital in which you’re detained.


    2. But, the MCA is far more draconian.

      It is for life, with no reviews.

      The disabled, and family have no rights under it.

      And, if can apply to anyone, who has ‘an impairment of mind’, on a wide non exhaustive definition that

      fails a capacity test, which few, if any pass, particularly with communication difficulties, often illegally based on a persons condition ie autistic/learning disabled.

      And, if not possible to administer they test, they are still deemed incapable of any decision for life.

      Therefore, unlike the MHA, a person can be encaged, and forcefully medicated for life, and their family can be excluded for life.

      1. The MCA is being used, to separate an adult ‘incapable’ child from their family for ever..

        Once the COP become involved, and, this can happen, merely because the LA suspect, a person is incapable , ie autistic/LD, this allows, a s48 interim order to be issued.

        This order, can be used, to remove the suspected incapable from their parents, and limit their access.

        But is generally used to gain control of parents and ‘incapable’, until a ‘best interests’ decision and DOLs are used for removal at a final hearing of the matter,

        Under the s48, any assessment, can be done, the main one is an expert, paid and remitted by state to report the person is ‘incapable’ for life.

        They, then, will then have no legal rights.

        Parents, are not given any rights by MCA, and have none, once their child is 18.

        Even, if they have a Power of Attorney in their favour, this is overridden by the fact the signor has always been incapable, probably illegal.

        If they apply for Guardianship this triggers a capacity assessment and guardianship is usually refused in favour of state see the blind autistic musician case one of few that was in media, although they managed exceptionally at CA to get it.

        The LA/care provider, then, can, and are, excluding the parents from even visits, as, they with the LA’s approval, COP need not be involved, as they will have already decided, the health and social care’s care plan is in the incapable’s ‘best interests’ under MCA.

        As these proceeding, are under MCA, COP will order ,that if parents are in breach of such best interests orders, and/or publicity orders, ie go to press, blog, they are automatically in contempt.

        This means you can be imprisoned. Often they attach penal notices to final best interests orders.
        Remember the lay jailed for 8 months for taking her grandad to live in Cyprus.

        We have no numbers of all those kept silent, and imprisoned in care provision under MCA and need FOIA notices.

        Once those under MHA section, are 18, this is the regime they can be made subject to and at any time the authorities can in any event section under MHA,

        Under MHA, although tribunal hearings, are usually in secret, this gagging provision, does not apply hence the existing petitions, and, family can’t be excluded from visits.

      2. As always, money.


        Managers, of Lifeways, responsible for Thomas Rawnsley’ care, at the time of his death, who held a 20% stake in Lifeways, made an estimated £50m, from its sale, for an estimated £250 million to August Equity, who hired Rothschild, the investment bank, to handle the review

        It is now managed by Cambian, whose boss earns 450,000 per year.

        How do you think all this money was made?.

        And, why did venture capital pay £250 million for the future business,

        For the care of Lifeways 1,500 patients with conditions, such as autism, and learning difficulties.

        August Equity, which already owns a string of healthcare related investments,since 2007 ,when it backed this Lifeways management buyout.

        A year later it expanded by buying rival firm Kentwood

        So the competition is effectively being eliminated.

        ‘Care’, for our most vulnerable, is the perfect business model.

        No accountability. No competition. No complaints about services. which are In secret ,and even if service user dies, no duty to investigate.

        And, even if there is an investigation, it is conducted by those, who commissioned the service, in secret, for maximum cover up.

      3. What would be the motivation of LAs and NHS etc. Especially as specialist placements are so expensive.

      4. Venture capital boosts economy, the disabled are on enforced medication for life, amount unknown, so boosts pharma our now 3rd largest industry.

        No doubt there are pharma/ care provider kickbacks, now education until 25/ social care and health, are all mixed in, funding streams and amounts will be less transparent.

        The average placement costs £4,000 per week, far more than provision at parents home, if you can get support..

        This money, is paid out of government central funds under Chronically Sick and Disabled Act 1970, a three way split between education, health and social care.

        So does not need to come out of local budgets, which are cut to the bone, to effectively force removal to a private institutions.

        It also means the person, is then effectively off the social services/NHS books, as all his care including medical is controlled, in secret, behind closed doors unseen, and, all they need to do is review.

      5. Also forgot to mention, the Minsters and MPs own interests in Private Healthcare Provision see awards here in 2012

        And these placements are not specialist , as an adult services social worker said ‘ we do not pay for specialist care’, but they charge for it.

        As they charge on the support needed, so the worse the behaviour, the more they can charge, and autism in this respect is a goldmine.

        See the specialist care that Thomas got- medication, and support workers, and practice nurse/ psychiatric oversight.

        The trusts/LA, do not need to provide specialist care, as Autism Act, were drafted, as guidelines, so would need the parent, if he could get net friend status, to apply for a judicial review of care plan, which costs wise, no legal aid, risk of not only LA but Health trusts costs, would be impossible, even to attempt, and, JR is likely not to be allowed, if care approved in ‘best interests’ by COP.

      6. But the stories we’re hearing show that the MHA is being used in exactly the same way Finola. Eden Evans – 8 years under various MH sections. Stephen Andrade – 5 years. The long term MHA detentions far outweigh the MCA DoLS ones

      7. But how many are being kept for life under the MCA, in their best interests, every decision made for them. Usually placed there on being declared incapable by COP. We have no numbers, they will have already been there for years. Their parents gagged on this and the services/care of their adult children by COP.This is the fate that awaits, those removed from MHA, and MHA section can still, in any event be imposed again at any time, although probably, unnecessary as these care providers, have their own specialist hospitals, they can remove to under their Care Plan under ‘best interests’.

  8. Mark I have just e mailed you Baroness Finlay’s reply to my e mail to her. If you put this on your blog, everyone can then e mail her personally, and see how she deals with it. The more e mails the better. Also the Law commission – consultation on mental capacity and deprivation of liberty e mail patrick.tomison@ lawcommission.gsi.gov.uk. Lets get ourselves heard.

  9. My 27 year old daughter has Rett Syndrome so not ASD but she does have severe learning difficulties and limited capacity.
    She moved into a Shared Ownership home last year. MySafeHome arranged a mortgage and together with Advance Housing we purchased a lovely 2 bed bungalow.
    Sadly here in South Glos the idea of a ‘funny’ person owning their own home is an anathema and we have not received a great deal of support. Clinical Commissioning Assholes wanted to stick her in a care home!!
    We are holding tight have kissed goodbye to CHC and waiting to see what Social Services will offer.
    Myself and her brother hoped to head up a team of PAs but Assholes wanted to separate her from her family.
    I hope the HOLD scheme doesn’t end as it can provide a fantastic home for life.
    Advance do take adults with challenging behaviours.

    1. so glad for your daughter Julie, everything crossed for the future for you all x , desperately hoping Home and Communities keep the scheme and more bids are made for funds across the country. It does work doesn’t it.

    2. The problem is, any care package is ad hoc, and can be changed at any time, as the arrangement, including the housing ownerships, can be sold to another provider, at any time , and the staff and housing changed.

      All our loved ones, under the MCA, can be made care package commodities, over which we, as parents have no control, and nor do the cared for.

      When Cambian, bought up Lifeways, they put down all the wages of the workers, to less than minimum wage, and had to put it up. Their investments fell over this.

      Venture capital, will eventually try to own the whole supported living, shared ownership market, if they think they can get even a quick profit, for their investors.

      Which is likely, as the services are paid on the assessed support needed basis, but support, is the cheapest, therefore the profit margins are huge.

      There is no accountability, as no one can complain about the quality of the service.

      The aim of venture capital, or indeed any company, is to make care as efficient and profitable as possible.

      The less profitable are just sold off. And these venture capitalist are monopolies, so therr is no choice, or competition.

      1. Her Housing Association can’t sell her home whilst she still needs it. They are not a locally based HA and do not provide care. We have the option to buy them out. It’s the same as any Shared Ownership scheme.

      2. That is good to hear, and hope you continue to maintain control.

        I assume you have guardianship ? If a person is MCA incapable, often a parent is refused it, and poWERS of attorney voided by the COP.

        And even Assured Housing Association tenancies can then be assigned to someone else, even housing associations can be closed down, or reorganised.

        If only there were more options for parents, to be at least partially, in control of what happens.

        best wishes, Finola

      3. I am her Deputy for Finance and Affairs and am going back to COP to get welfare as well.
        Her HA is Advanced Housing and her Mortgage was arranged by MySafeHome. We bought a property on the open market. We put down a large deposit.
        Advance have provided Shared Ownership to adults with challenging behaviours.
        They use the money from the HOLD scheme.
        Social Services not involved by LA housing Dept have to give permission and confirm that they cannot house the person.
        Are you on Facebook?

      4. No, my daughter hijacked it, but am on twitter if you are.

        You are lucky to get Deputyship, many are refused in favour of court and OS.

        And many parents have limited access and no say in care.

        We need the numbers of those, so cruelly cut out, or deceived slowly until it is too late.

        Glad you seem to have gained control, but I assume that the Deputyship has to be renewed annually ? At expense ? And could it be withdrawn ? As long as the state has the upper hand and our children can be useful commodities, we sadly cannot be at peace.

        Best wishes and keep in touch

      5. Actually one SS manager did threaten to take me to court once to gain control over my daughter. But I had the last laugh as he was sacked over Winterbourne View!

      6. Problem is all SS etc now tools of government policy, so it can happen did you see the post I put in re the costs of Deputyship being paid by family if there is a dedispute, this shows they want control as how can families pay all their lawyers costs ie official solicitor and his barrister and LA lawyer and usually health trust and their lawyer. COP is a money making racket. before FAMILY COULD RELY ON POWERS OF ATTORNEY AND TRUSTS and the system worked better

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