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The Power & The Gory

May 3, 2016

Steven and I have just been participating in the weekly Gladiators viewing. This episode was the 1994 Grand Final where Sam Cojoe is nearly decapitated by Shadow in Powerball. Steven has watched this episode so many times now that he has built up an incredibly detailed narrative about what happens to Sam from the point of him being whisked away from the National Indoor Arena in an ambulance. I could have gone the same way as Sam today because I wasn’t really concentrating on all the ins and outs of Duel and that tends to wind Steven up. My mind was half with Ulrika but half mulling over a couple of things I stumbled across this morning.

Before I left the flat to come back here, I watched an episode of Escape To The Country. At the end, the male househunter cuddled up to his wife and said: “This place will be idyllic. If you have your partner and you have your family and you have your home, you have everything”. It was slightly slushy but it brought me back for the umpteenth time to the incredible Power that Hillingdon have exercised since 2009 in all three of those areas in my life. Firstly, Whistler’s Mother told me that if I didn’t leave my wife, she would take Steven away. Partner gone. Then six months later, she refused to return Steven home after his three days respite and it took a year to get him back home again. This was illegal. Family gone. Then 18 months after Steven eventually came home, the council made us homeless, again illegally, and we lost our home. Home gone. The three foundation stones of our lives removed by people who have more power than us. Using the househunter in Devon’s template, we had lost everything. We had nothing.

But we didn’t have nothing. We had everything because we had love and belief and balls. And some luck.

Somehow merging with those thoughts are the reflections I’ve had since reading Mark Brown’s post this morning about confidentiality. Mark wrote the post in response to someone who had made a criticism of Seven Days of Action. The post is here: https://thetiredoptimist.wordpress.com/2016/05/03/does-confidentiality-matter/comment-page-1/#comment-51

What I think is at the heart of this is another hurdle that faces people with learning disabilities and their families. I don’t think it would be an issue in families that are neuro typical. It’s the argument about who is in the best position to decide on the best interests of someone who is deemed to lack capacity to make the decision themselves. In this case, it is about telling a story in public about the learning disabled person. I think it takes a very open minded authority who play with a straight bat to take on board, Justice Munby’s famous quote of The State being the servant not the master”. In all the stories in Seven Days of Action, the State was definitely the Master. In the three examples I’ve quoted from my life, The State mastered some shocking decisions for us. The Justice For LB campaign has demonstrated consistently for three years that when the State body is intent on controlling and concealing the truth, the Power dynamic becomes very gory. And it’s fascinating how the State nearly always use “confidentiality” when it is clear to everyone that they are trying to shut down the truth emerging. Dr Sara Ryan wrote just yesterday about how the family advocate was expected to sign a confidential confidentiality agreement. In Hillingdon’s application to the Court of Protection, one of the orders they were seeking was for me to be prevented from mentioning Steven or the actions of the Authority online or to the media. And more than one of the mothers involved in the Seven Days of Action stories has been threatened with a gagging order since the start of the campaign.

I’ve spoken to the mothers a lot since the campaign was first mooted and I am completely convinced that none of them were prepared to take part for their own egos. Going public nearly always comes out of desperation. Justice Peter Jackson referred several times during Neary vs Hillingdon to the underhand tactics of Hillingdon – blocking scrutiny, false promises, incorrect information. The list is endless. Families tend to go down official channels first because they know no different. It took me seven months to realise this wasn’t going to get us anywhere. In fact, that’s not true, it would  have got Steven to Wales, probably for the rest of his life. I genuinely felt it was in Steven’s best interests to contact the press and media and to speak publically online about our predicament. It felt like the only way that I could find other people who had been through similar and perhaps securing legal representation. Thank goodness, it worked. Did my actions compromise Steven’s confidentiality? Possibly. But as the State invariably has the person and their family pinned firmly against the wall, I will argue that the ends justified the means.

I think it often needs a third party, in our case a High Court Judge, to examine the agenda and motives of the best interests decision makers. My agenda was only to get Steven’s voice heard and for him to be able to realise his wish of returning home. I’m not convinced that Hillingdon had a pure motive for their (seemingly) ethical position over confidentiality.

As has been discussed many times in this blog, I agree very much with the thoughts of Dr Sara Ryan when she says that society and in particular, the State, by and large, see learning disabled people as not quite human. It can be the only explanation for why Southern Health continue to treat that population of their patients with such utter contempt. Not once in 2010, did Hillingdon ever see Steven as a human being with the same needs, loves, values, wishes as the rest of us. To keep someone away from their home and family for eight years like Eden Norris in Seven Days of Action reveals that the professional decision makers have long since crossed the line of seeing Eden as a human being. Steven doesn’t have the same opportunities as I have to present his human beingness. He is seen as a “service user”. With a less open minded Judge, he could have been SN. All these things means he faces an uphill battle in asserting his humanness.

I’ve been challenged a few times about Steven’s online radio station. The same argument usually. Is his privacy and confidentiality being compromised by broadcasting his music taste and anecdotes weekly? It’s true, he has no idea of the reach of his broadcasts. I told him earlier that his choice of Coldplay didn’t go down very well this week. His response – “No more Coldplay for the world and Brighton”. Without understanding the scope, one things is clear, he gets a huge buzz out of compiling the programme each week. He’d be very upset if someone tried to stop him. For me, it’s another best interests decision.

Regardless of the music station. Regardless of the court case. Regardless of my writing. Steven now has his own place in the world. A tiny, personal space where he is human.

I like that and I think he does too.

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From → Social Care

13 Comments
  1. Leo permalink

    Mark to right. I spoke out because I am my sons voice. I would and will do it as long I have that voice … By god I will. They want to gag me they can go ahead. I will still speak out.
    They want me in prison well let them go ahead. They already have my son in prison why not me? The mother who cares and loves her child unconditionally.
    So let them sent me to prison. I am quiet near Holloway lol so it won’t cost much on transit.

    I am and all my friends the Mums tired of the threats and the bullying.
    So I am only 5 feet tall 8 stone But boy can I fight. I will stand up to this cowards.

    Anyone hurts my babies I will hurt them back. Even if only by using my voice.
    I won’t let this bully’s intimidate me.
    Privacy and data protection??? Where was my sons privacy and data protection when he was allegedly kicked when his hand was broken when fingers. Broken. Bruises all over? When he was restrained for 12hours a day, 5 people holding him down. When he was tied to a bed? Where was his data protection ? And privacy ? I think one can argue or if you will be very much a cynic, that they aren’t trying to protect our sons. They ate protecting their A…e

  2. I agree that in the face of the damaging action – definitely not in people’s best interests – and after trying to work in partnership but finding themselves side-lined and even ignored, it has to be in the person’s best interests to tell their story. It’s also clear that given the imbalance of power for the family this has not been lightly taken. We also have many people who make it very clear what they want and whose behaviour actually shows not pathology but extreme distress at their powerless situation. Who’s judging their capacity in this? Despite the supposed safeguards in the law, people don’t get justice without this exposure it seems to me and if the decisions made were right why is there such concern by authorities? In the end the Court seems to be the only fair arbiter but it shouldn’t be necessary to go through all this whilst the person waits in the face of the lack of urgency concerning their plight. We know that it’s the lack of appropriate community support/proper planning for transition and increasingly it seems a lack of expertise in the field that leads to luck whether in a crisis you end up in an ATU or get help to manage the situation and get an appropriately committed service. (Not helped by the perverse funding arrangements) Noone seems to be accountable for the failures (which they are if placed away) and it’s all too easy to pretend it’s the person’s fault/illness/badness…. They don’t have a sufficient voice so it’s left to families to raise their voices. There are some good examples where an authority/community team/provider has been able to respond and ensure this doesn’t happen – be good to hear them and have authorities learning from this and putting in place proper support and contingency plans – not hiding behind confidentiality. Locally we are all also responsible for not tracking if people get excluded from their home area and making authorities accountable for planning immediately and putting things in place to prevent recurrences.

  3. Sally permalink

    Agree.
    I think most of us persist for ages, being reasonable. It has always worked before in our lives, after all. Problems can be sorted out. If some decision is clearly made under false assumptions, fine, you just clear that up. We have lived in a pretty rational world. Then we enter LD land.

    When things with LD services go wrong, well then, we think it’s just a matter of sorting it out, explaining what the problem is. We do not want to be seen in a negative way, we don’t want to bring our young people into the public gaze and we certainly don’t want to anger LD services.
    We then find to our bewilderment, that we can’t sort this out . That the decisions are cruel or nonsensical or have brutal consequences . That even if we point this out not much happens apart from, inexorably, we are clearly regarded as difficult, foolish, greedy. Polite complaint sends us around the merry go round again. Upset complaint gets us less . Agitation gets us labelled. We are helpless, but assured we are powerful.

    So people go public. I am sure there are parents who want publicity for their own glory and to hell with the consequences for their children. I have not met any parents like that in the brave people who come forward for the learning disabled .

  4. weary mother permalink

    ‘Professional confidentiality’ is the biggest load of hypocritical bunkum ……

    Our deepest fears and our most personal information is tossed around the social work office and the office kitchen and in corridors, like ping pong balls. (And on files left on desks).

    Confidentially my a..e.

    It is a tool used to keep us fearful and begging; in our allocated place in the power pecking order..

  5. weary mother permalink

    …….Above may sound harsh, but,
    at a time where our sons and daughters are handed over by LA’s to total ‘institutions’ many miles away from home or to care agencies who have competed on lowest tender, and then pretty well ignored by LA (apart from Finance dept),responsibility for their safety (at the very least) is left to us.

    I suggest that too many LA’s have given up (for whatever reason) any pretense of monitoring the care they purchase on our sons and daughters behalf.

    LA’s who placed other peoples vulnerable sons and daughters in Winterbourne and SHFT etc etc etc proved to have fallen very short in ensuring safe far less happy care for the people they placed…..

    If LA’s don’t, won’t or cant’ monitor and measure their purchased care services, and apply their Statutory Duties Of Care then it is left to us/the family to do whatever we must ……and that includes holding these failing LA’s to account?

    If that means we are forced to speak out and tell our story wherever and however it must be told, so be it ? And we should be able to do this without fear.

  6. Carole Cliffe permalink

    Agree whole heartedly yet also fearful they will never understand our perception and that we are wasting our breath I think with dogged determination one day “they” the almighty power they perceived themselves as will HEAR what we are saying…………….Why shouldn’t we bring our loved ones into the public gaze women had to when they wanted to be heard and seen for who they are its what you do when you are treated as subhuman or a subclass…………Invisible to the naked eye yet clearly in view………..

  7. The more I think about this reproach, the more it bothers me. As parents/families of people who continue to need our support in unusual and serious circumstance, we do have to still be aware that they ARE adults, and this can get difficult. Are we acting in their interests – or ours? Sometimes, it can be quite difficult to separate which is which, in the same way that separating the cost of a bottle of shampoo gets difficult when doing accounts! As parents it IS in our interests to put THEIR best interests first – frequently at considerable cost to our own.

    I think also that as we tend to be isolated, it is easy to become very anxious and easily undermined. Dazzled by fine words like “confidentiallity” – which then get used as weapons against us.

    In the years I have been a carer I have got very irritated by these fine words that turn out to be empty and meaningless. And the fads in traininng and “exxpertise” which come and go like fashions. Independence Training. Boundaries. Person Centred Planning. Safeguarding. Flavour of the month. All sound very positive. Nothing much changes, and they do not always deliver what you might expect. The SOUND good, and get appropriated from things that might BE positive if they did not fit into a system getting more remote and unhelpful. Is “Confidentiality” the new one? Becausee it will work very well for them, won;t it? Very, very easily used as a means of silencing and controlling any member of the awkward squad.

    People have a right to privacy, but they also have a right to speak out. Confidentiallity as applied by courts may have legal and logical reasons – none of us would be keen to be plastered all over the press without our consent, or a very good reason for needing that – but having the concept appropriated by the State to cover its blushes is not quite so appealing.

    I have yet to come across many professionals who actually bother to understand the Mental Capacity Act – that “capacity” is issue specific, not some excuse for ignoring rights. Ditto for the Care Act – they read the bits that work in their favour. – and we had better learn to do the same. (Not that it makes a whole lot of difference if you KNOW “they” are ignoring the law – hard for us to do much about it.)

    When the State and its representatives show the same care and respect for our charges as we try to, then they can preach “confidentiality” at us. Otherwise it just seems like another weapon in a very unequal battle.

  8. Sally permalink

    I was just rereading the appalling letter to Sara Ryan from Katrina Percy, Sloven CEO. https://mydaftlife.com/2014/08/20/katrina-percy-the-reply/
    What strikes me is the rage and spite about publicity bleeding through the letter. KP is clearly enraged about Dr Ryan’s blog, furious about the unwelcome light being shone on her.
    It is clear that it is the blog, and only the blog, which is giving Dr Ryan any degree of power, as far as Ms Percy is concerned.

  9. Pauline Thomas permalink

    I believe that as soon as you need to engage with social services all confidentiality goes out the window. Your confidentiality that is Not their confidentiality They can be as secretive as they want. You and your loved one have no secrets. You give up any privacy once you need to invite the professionals into your lives. We have no choice but to invite them in because at the end of the day the mammoth task of looking after an adult with LD becomes too consuming to bear alone.

    Then we get judged and gossiped about by the care managers in the offices. Apparently I am known as the mother who will not let go. True I will not let go. Would they let go if it was not right for their vulnerable loved one? I doubt it.

    I’m scared for him. He is unique. We all are. I do not want him ‘in a one size fits all’ situation. I am not completely immune to the hard task the care managers have pleasing and getting it right for so many different complex people. It must sometimes be hard to work with so many restraints from the LA but please please remember that people who look after loved ones with a LD never ever really achieve complete respite from worrying about their future, especially when they are often looked after by an ever changing stream of carers. Probably for the rest of their lives. Then you wonder are they going to be kind to him? Will they meet his needs? On bad days these worries are all too consuming. Stuff of nightmares.

    I am pinning all my hopes on the new company that has taken over day services and respite in my LA. The people I have met seem genuinely dedicated to making the lives of people with LD more meaningful. I pray they succeed. They need to succeed for all our sakes.

    I know what my son wants. He wants to be useful. He does not always want to be on the receiving end. He delights in pleasing. ‘My pleasure’ he says when you thank him for some small deed. He likes people to talk to him. He likes ‘free and easy’. He does not want to crayon in pictures. He did that when he was at play school. He is 44 years old!

    That is why Mark’s Steven gets so much out of his online music show. It is adult. He is actually not on the receiving end of anyone’s care. He is giving and achieving. All humans need to achieve. That is what gives our lives some meaning or purpose.

    • Good point.

      Due the recent creation of Multi Agency Safeguarding Hubs, now operating between all agencies and professionals ie GP, NHS, care agencies, schools, education packages, all information is shared between everyone, who comes into contact with the disabled, and their family, without their knowledge, or permission. Ironically, on the excuse of the disabled’s confidentiality and safeguarding.

      Care workers, also discuss information with each other, and nothing is secret, and if incorrect no chance of correcting it.

      The disabled and their family’s privacy is non existent, so to worry about it, when the disabled are abused and denied rights is …………………………………………..

    • Leo permalink

      I agree. The moment we go to social services. We lost our privacy. It’s passed around as if it’s ok for mine and my child’s life to be in their domain.

      Yes most of our children is true can’t consent to have their stories told, they tne spooks who threat and give us scary tatics, but if I can’t divulge my sons situation due to Privacy and data protection, so why is is it ok for them?? Our children does not belong to them. They are ours, not theirs, even if some of the young people can speak, they still are under the MHAC, in my son’s case he had no capacity of any kind, why should I live it up to this spooks?
      And why should even those who can speak let the LA and ATUS feel their parents can’t speak up for them? And why should it be about their privacy?
      They all need all of us to speak for them. I for one speak for my child and my friends and the 3 500 around the country. Why do I speak for my son ? Because it’s the right thing to do.
      Do I like people knowing business ? No!! Do I like people knowing about me? No. I hate having to tell people my life. I hate people knowing who I am. I am a person who is not good at telling anyone my life. Hate the fact I have to ask for help, most of us mums hate hate hate to be put there. Put us there. Put us in front of all. Feeling vulnerable,but it’s a must. While we have a voice a heart friends to support us and each other we will say enough is enough.. We will not stand quiet.

  10. Catherine Hodge permalink

    Confidentiality is probably not any interextr to the parents, or the children or young adults trapped in ATUs.
    I agree with the TiredOptimist, that Mark Neary handled Stevens imprisonment, in a very dignified manner. I am very much a “chop of my nose to spite my face” kind of girl, so I know I would have got myself into trouble. Gagging orders make me gag. How unjust to remove freedom of speach,, just because you dont agree with the authorities. Doesn’t realy fit with our democratic lives, it’s realy quite backwards, and not at all fitting for this millenium. But then again, we do live on a planet that is considering Donald Trump for president, so maybe I hold the minority opinion here.

    By the way Mark – please let Steven know that I’m a huge fan of his compilations, and also enjoy reading the reasons for his choices. Keep at it Stephen. Its a free world, and your a free man, enjoying your life. Well done.

  11. Shirley Buckley permalink

    I hold all my son’s medical notes with his permission – he has Lennox Gastaut syndrome epilepsy. For 8 years the GP has refused to talk to me (orderednot to givve me any information) the epilepsy consultant says Martin has capacity so Martin can make the decision, the care home have told all their staff they are forbidden to discuss Martin with me, and the LA have accused me e of financial abuse. The Court of Protection put a penal notice on me if I influenced Martin. I recently spent weeks trying to convince Chiltern continuing health care that the form Martin signed giving permission for me to see his medical notes was valid – they wrote that he did not have capacity. It is so ludicrous – epilepsy does not come under confidentiality – everyone has to know Martin has epilepsy, and he has to carry on him a card that states what his seizures are, medication, etc. For the last 8 years he has not had any card, nor even an epilepsy care plan. Without these he is at risk

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