Trust and The Trust

Some blog posts are hard to write – this is one of them. It is also my 200th post on this blog. For the first time, I’m writing, not to tell a story or to make a point, but to sort my head out.

At the time of writing “Pathways and Cul-De-Sacs” on Saturday, I was disillusioned and desperate. Learning that the NHS Trust’s learning disability nurse only works one day a week and comparing that to the spin put on her role by the Trust was the final straw. How could all those medical people involved in Steven’s care be so dis-interested in his pain? Why didn’t I know that a learning disability nurse would be such tokenism and another cul-de-sac? Why are all the caring systems such utter shite?

In my meditations over the past couple of months, the same message keeps coming up – Immediacy. You must act now. Not just about Steven’s health but about everything. I can’t remember another time in my life when there has been such a sense of urgency to act – to take charge. It also feels that if I don’t heed the message, it will soon be too late.

With all these thoughts swimming into my consciousness, I arranged for Steven to go to a private clinic on Sunday. The attitude couldn’t have been more different to what we’ve encountered at the GP surgery and at A&E. In the space of four hours, Steven was examined, had blood and urine tests and a CAT scan. It was through the latter, that after four weeks of awful pain, we finally got a diagnosis in one day. It would have taken at least another month of agony & pain induced meltdowns if we’d continued down the road we’d been sent down.

The diagnosis is Stage 2 non-alcoholic steatotapatitis (NASH) – fat deposits on the liver that can cause aching pain in the abdomen and relentless tiredness. Exactly what Steven has been trying to tell everyone for the last four weeks. The big problem is that it can’t receive direct treatment – it is caused by excess weight and will only really correct itself with weight loss. He can have pain relief in the meantime.

And at this point, I’m back in court in 2010/11 and having to deal with Hillingdon’s “belief” that I don’t take food issues seriously. And I get scared because my imagination pictures it all happening again. And if I start to push what I truly believe that it’s not fundamentally a food issue but an anti-psychotic medication issue, then it becomes a safeguarding issue for someone who thinks that they know better.

And then I go back to, “why the fuck is he on medication in the first place?” How can his weight double in six years of being on tablets and nobody sees the link? The latest psychiatrist report showed no signs of any mental health issue, yet here we are, shovelling anti psychotic medication into him. And I also go back to his time in the Unit and the lies they told to justify why Steven lost some weight whilst there. Steven has told me – because he often went days without any food at all.

And then I remember the meditation. Immediacy. Act now. And I separate who is useful to Steven and who is useless and ruthlessly remove the useless. There is too much at stake to be faffing around with the system. I’ve been doing the same thing for months with the housing situation and the care package, this is just another version of the same. Only this is a matter of life and death. The psychiatrist who agreed with Hillingdon’s plan to send Steven away to Wales retired in early 2012 and since then, Steven has seen a series of “keep taking the tablets” locums. No use whatsoever when you’re dealing with a life threatening condition. Having lost trust in the NHS Trust, I went elsewhere on Sunday and immediately a light began to shine. I said to a friend on Monday: “I wish I could find a psychiatrist who specialises in autism”. Ten minutes later I suddenly realised that I knew one – the psychiatrist who was appointed as the court expert back in 2010. I managed to track him down and spoke to his secretary. Hopefully he will be prepared to take us on and I can get a second opinion about the connection between the medication and the weight gain that doesn’t ignore the bleeding obvious.

I took a couple of hours out on Monday night. It wasn’t a respite night but I really needed some breathing space and asked the support worker to stay on late. I went into Uxbridge for something to eat and decided to drop the clinic’s report into the GP surgery. The clinic had also given me a CD of the scan. It was infuriating. The receptionist kept giggling about the slowness of their new computer system and she wasn’t sure if the message she was sending through to the doctor was getting through. I said, “But this report is about Steven possibly dying” but that didn’t register. Whilst there, I also asked how the blood tests that Steven had recently didn’t show this up. It turned out that the bloods he had taken at the hospital hadn’t been passed on to the GP. Or perhaps they had and their sodding new computer system had lost them in a haemotology void somewhere.

The time is now. When I came up for air, I hope I started to see things a lot clearer. The systems that are meant to help us and serve us are dead. I’ve written about this before but in the past, I’ve meant they’re spiritually and ethically dead. Now it feels a lot more literal. There is no effective life force in them. And if I engage with a dead system, then Steven might be dead.

32 thoughts on “Trust and The Trust”

  1. Its great that you have a diagnosis, and one that has some hope attached-if Steven’s weight comes down, so will his pain. And its fantastic that you are hooking up with a psychiatrist who specialises in autism so the medication regime is actually reviewed with thSteven’s weight gain in mind -a locum will be very unlikely to do anything but continue with a plan.
    There is nothing, but nothing funny, about systems which are hopeless-whether its a medical computer system, or any service meant to help. In a perfect world, any employee who thought it was funny that things were not working well would be sacked on the spot. Its not funny.I think we are all sick of the rueful little smiles of employees explaining that so and so is a bit slow!

  2. I don’t support private healthcare but I can well understand why you chose this route and can imagine doing the same. Ridiculous. I had a stand off one day with a relative’s GP’s receptionist re a missing MRI scan. It had “come into the building” but was “upstairs – and takes a week or so to get brough downstairs”. The look on their faces when I suggested they might like to go upstairs and get it – and eventually they did – but my relative wouldn’t have asked, would have just gone away and waited. I hope the pain relief at least make’s Steven’s life a bit better in the meantime.

  3. All you say in your blogs can be validated by most if not all other parents like us, out of their own hideous experience. We are all sidelined and worse, and as soon as we challenge anything we become one of the awkward squad. Too many of us have been forced to pay for private care for our vulnerable son or daughter out of our small incomes just to save them increasing suffering or worse. Most of us will have wandered blindly through LA and NHS complaints process’s just to come up with nothing at all but sapped lives and health, for our efforts. Even the best of LA people close ranks with the worst if their team is under scrutiny. A price we know we cannot pay if we have a ‘good’ one for a change. So we keep quiet to keep them on side, and try to sort things (again) quietly, by ourselves. My son can only walk short distances now for he has a very damaged spine. He and another person with LD (who saw what happened and neither of whom could lie to save their lives) both assert/ed that his injury was caused by his carer. I believe them both absolutely. The LA believed the carer, and promoted him. I had to ‘kidnap’ my son and pay privately for a diagnosis and assessments for the LA would not admit he had a problem. It took four years, and he was in a wheelchair before we got a diagnosis and the nightmare 9 hour life threatening operation, all sorted by his family blocked by the LA. The LA (took three years) was eventually told off by the ombudsman for the serious neglect of him, and disrespect of him and us. But nothing has changed apart from me now being one of the awkward squad, and still trying against the gale of LA resistance to get safe support….etc .

    In our brave new world many of us now have cheap stressed agencies to deal with, who’s people work unseen; people who can manipulate our vulnerable sons and daughters not to speak out. ….

    I hear the hollow echo of my own voice for I am heard only by all the others like me who speak into this word speak snowed, alien world,. It is called……CARE……………………

    It would all make a science fiction horror film that no one outside of our world would believe………………

  4. Yes, you are right, these things can’t wait. Waiting lists are where people die.

    I wonder if the medications that Steven has been put on are also processed in the liver, putting extra strain on it? Hope the new psychiatrist will be be up for considering the pharmacokinetics/pharmacodynamics of Steven’s medications, and putting together a weaning plan.

    Might it also be worth considering how you could reduce the amount of fructose (“alcohol, without the kick”) in Steven’s diet? I realise that it will be difficult for Steven to accept changes, but might there be someone (probably a cook rather than a dietician) who could help you work out how to produce the sort of food that Steven likes, just minus the fructose/sucrose?

    “Sucrose (table sugar) and its synthetic sister high fructose corn syrup consist of 2 molecules, glucose and fructose. Glucose is the molecule which, when polymerized, forms starch; which has a high glycemic index, generates an insulin response, and is not particularly sweet. Fructose is found in fruit, does not generate an insulin response, and is very sweet. Fructose consumption has increased worldwide, paralleling the obesity and chronic metabolic disease pandemic. Sugar (i.e., fructose-containing mixtures) has been vilified by nutritionists for ages as a source of “empty calories,” no different from any other empty calorie. However, fructose is unlike glucose.

    In the hypercaloric glycogen-replete state, intermediary metabolites from fructose metabolism overwhelm hepatic mitochondrial capacity, which promotes de novo lipogenesis and leads to hepatic insulin resistance, which drives chronic metabolic disease. Fructose also promotes reactive oxygen species formation, which leads to cellular dysfunction and ageing, and promotes changes in the brain’s reward system, which drives excessive consumption. Thus, fructose can exert detrimental health effects beyond its calories and in ways that mimic those of ethanol, its metabolic cousin. Indeed, the only distinction is that because fructose is not metabolized in the central nervous system, it does not exert the acute neuronal depression experienced by those imbibing ethanol. These metabolic and hedonic analogies argue that fructose should be thought of as “alcohol without the buzz.” “

  5. Kay This is so helpful.
    Can you get ‘soft’ drinks that do not have fructose etc? I have tried the fruit flavoured waters to try and wean son off cola’s….But agency carers say cola (lots) his choice…and wont to help to influence….he is morbidly obese now and does not eat hugely.(I think)

    1. Weary Mother, you could have a look at the nutrition panels on the side of the bottles – whatever the sugar content is, half of that will be fructose. Some of the fruit ‘waters’ are as sugary as pop. Any of the ‘diet’ or ‘low-cal’ drinks will have no or minimal sugars/fructose.Though even diet colas / sodas can have other health-sapping side-effects – the phosphoric acid that is in many of them is bad for bone and tooth health. Sugar-free squash made up with fizzy water might help if he likes the bubbles and is up for different flavours?

      Comes back to this choice/care/capacity conundrum again, doesn’t it? Yes, as an adult he has the right to make choices…. but cared-for people are by definition not in a position to make all their own choices for themselves. If the agency ‘carers’ are administering drinks that are adversely affecting your son’s health – well, they are not living up to their responsibilities, IMO. Part of their function, surely, is to *protect* his health? Including by ensuring that what he has available to eat/drink is chosen to improve his health as well as be palatable.

  6. My son was put on antipsychotics at age 9. I have tried to reduce them numerous times but his outbursts have just been too severe and so he remains on the same drug, risperidone. His weight also doubled, but in his case there was an obvious increase in appetitie, this has moderated somewhat over the years but I still have a lock on the pantry. He lost most of the excess weight when I switched his beloved juice to artificially sweetened cordials, it was the only way I could think of to try and tackle his weight gain and also to help with his dental hygiene issues. No way I was going to restrict his food intake at normal meal times, food is one of his chief pleasures. It took about a year, though he was still growing so a growth spurt helped him along the way. I do think that some modification of the sugar load can help in some instances of antipsychotic induced weight gain, but whether that would be the case when Steven’s diet and appetitie have not really changed? I hope the new psychiatrist helps shed some light on the situation. Get well soon Steven.

    1. Glad you managed to find a way through for your son… Went and had a look at antipsychotics’ side-effects. Scary stuff – seems that they have a well-documented propensity to mess up a person’s fat and insulin metabolisms. Apparently some also lower body temperature and the rate at which a person burns off food energy. No wonder weight gain is a side effect! It was the mention of Steven’s pain being caused by inflamed, fatty liver that got me thinking about fructose in relation to his symptoms. The way fructose is metabolised means it can generate fatty deposits specifically in the liver, in exactly the same way that alcohol does. Restricting fructose might not make much difference to his overall weight, but it might help give his liver a break.

      And I totally agree that restricting food at mealtimes is cruel – but there are plenty of ways to make sure that food offers top taste bang for minimal calorie buck, even if a person’s preferred foods are limited. A gradual approach such as you describe is really the only sensible way to go about it.

  7. If Steven’s only diagnosis is Autism then why is he on anti-psychotics? I have never heard of that. My daughter only took medication for her epilepsy.

    If you can find a doctor that specializes in autism then perhaps you can put it to him that you can ease Steven off of the anti-psychotic medication for a period of time and monitor him. If after a reasonable period of time Steven doesn’t go “downhill” then the doctor can agree to leave him off the medication. If it goes the other way, then you will agree to put him back on the medication. We’re talking a period of several months. A long time. Time for Steven’s body to readjust itself. It takes time for the body to set itself right after being on medication that long. Doctor’s are far more likely to say “We’ll see” than “We were wrong”. Worth a try.

    1. Anti psychotics are sometimes used in Autism (see NICE guidelines) , as they’ve shown some success in easing the rigidity of thinking which can be a major contributor to violent behavior. Their first effect with anybody is usually to sedate, the cognition easing comes after the person has been on the right dose for a couple of weeks.NICE are pretty clear about how and when this should be tried and that it needs to be carefully monitored. It also can’t be the only strategy being tried!
      My sons would eats sweets and drink cola all day long if given any chance, and for years also only ate plain boiled pasta with ketchup! I was feeling totally helpless and resentful about the whole eating area, none of the advice seemed to work and I was using food to ward off meltdowns, knowing that “just be tough” is a lot more easliy said by a person who won’t be having things thrown at their head for weeks. Anyway, I went to a very good talk by a doctor at a NHS hospital unit for children with disordered eating. She said most parents of autistic children are so sick of hoplesss dietary advice that they avoid dietictians. The unit acknowledged the autism and gave suggestions which took all that into account and could be done.
      Its still difficult, but at least I’m not trying to carry out hopeless advice.(make carrots into smiley faces etc)The difficulty comes form the need to set rules, arrange the food intake at home and monitor things out of home. Who among us hasn’t been thrown by an unexpected sweets stall looming up?

      1. Oh gawd, the Annabel Karmelisation of meals. Aargh. Bet carrot faces just weirded your son out, didn’t they?

        A lot of dietary advice seems to be based on the premise that it’s all about the nutrients, stupid, whereas in real life, it’s about FOOD, and not just its palatability, important as that is, but all the cultural and emotional stuff that surrounds and permeates food and eating.

        Which is why (I think) a cook who understands and loves FOOD may be more help than a dietician in devising workable ways to eat healthily – cf Jamie Oliver smuggling veggies into classic school dinners, or the Hairy Bikers’ “fakeaway” meals. Start from where people are now, and figure out how to alter things, as gradually as necessary.

        I’d be interested to hear more about the sorts of specific suggestions that the unit you mention made?

        And yes, it’s all very well getting stuff sorted at home, but outside… especially if ‘outside’ people refuse to understand the consequences of allowing unfettered ‘choice’.

        Click to access Eating-Selves-Death-Rights-too-far-Dykens.pdf

  8. Mark nothing will change until the LA is stripped of its unlimited powers. I have spent 8 years in the Courts for my son, and tens of thousand of pounds. If the LA says black is white they have to be bellieved – otherwise they cant do their job they say. I have tried every legal process there is and always come up against this brick wall. Who is there out there who is willing to try. Even if all of us got together we have no power against them

    1. Hi Shirley
      Did you see my comment below, you know, as well as my blood boiling ( I’ve got blood pressure tablets!) over our disgusting experiences, it’s sickening having my blood boil every time I get screwed up reading about other peoples sufferings. Unlike a lot of weary parents I my adrenalin turns to fight ! I’m gonna go fighting :^) One of the big problems is that the LA’s have got the immunity of their judicial discretion. I’m no expert but we’ve got to get all these disparate blogs together to consolidate our strength then kick arse !

      That’s exactly what I am saying about our experiences ! It’s amazing we are all sharing the same experiences. We are all saying the same thing- but separately.
      We are all banging our heads up against a brick wall becoming frustrated, bewildered, angry, despairing almost radicalised. Whichever way and however you approach “them” you arrive at zero or stay at square one during which long drawn out time you are tortured and then punished with the fallout of the consequences that “they” have created.

      Sadly it seems by all our experiences that all our efforts at bringing into reality the humanity that we are lead to believe is what makes us humans different are being
      crushed by the people with no humanity and who have the power to do it.
      This problem is systemic.

      This systemic problem is made possible by the policy that drives it.
      The policy comes from the Government policy.
      The Government policy comes from the Government manifesto.
      The Government manifesto starts as the election manifesto.
      The election manifesto containing the policies is presented to the public at the general election.
      If the public want the policies they vote for them

      It’s simple, the public voted to cut welfare benefits.

      So what’s the answer if you’re in my position. (It’s all happening on our watch)

      I think what we are all saying should be said together as one voice, I think the total number of voices are considerable and we should all sign up to this (no charge) .
      We then agree a mandate list of requirements that must be carried out (now).
      This could include funding, a dethroning of social services and clarification
      of social service legal limits making them a service proper. etc
      This mandate would be presented to the main political parties prior to the next general election offering them the chance to pledge to include our demands into their policy in return for our vote.
      If no party agrees we withhold our vote.
      We all know that politicians are desperate for every last vote.

      Kind regards

      Richard G

  9. I am getting old, and the question of who will care for my daughter, who will fight for my daughter is very hard to deal with.

    Reading about other people’s experiences is helpful and instructive – if terrifying sometimes – but I have recently also been reading The Guardian’s Social Care articles – and jeez I am having some trouble reconciling the glowing reports of “improvements” and innovations, dedicated and idealistic professionals with the fight we all have to get any sense or support out of anybody. Noises are made about listening to the “clients”, listening to the carers, but it seems to me that a lot of the theories are going in exactly the wrong direction; all the seminars and conferences and newly created posts getting further away from what matters, the questions that ought to be being addressed.

    My daughter is one person when she feels loved and cared for, and quite another when she is being “assessed” and slotted into a set of preconceived assumptions. Why are people with autism put on anti-psychotics? Sometimes because it is easier than figuring out more constructive ways of managing difficult behaviour.. My daughter has CP, with associated communication and behavioural difficulties, and so far I have avoided going down that route – but mainly by avoiding asking for help! Reading Sara’s blog in the early days, I could identify only too easily with her desperate attempt to get appropriate care for her son. Reading this week’s report, and how disastrously that went wrong is just devastating. Talking to parents, involving parents, is a start – but somebody somewhere has to start hearing what we are telling them: that our children are fully human, and deserve better.

    Health issues are of course the most terrifying of all. The idea that someone terrified and in pain should be dealt with by calling the police is barbaric.

  10. That’s exactly what I am saying about our experiences ! It’s amazing we are all sharing the same experiences. We are all saying the same thing- but separately. We are all banging our heads up against a brick wall becoming frustrated, bewildered, angry, despairing almost radicalised. Whichever way and however you approach “them” you arrive at zero our stay at square one during which long drawn out time you are tortured and then punished with the fallout of the consequences that “they” have created.
    Sadly it seems by all our experiences that all our efforts at bringing into reality the humanity that we are lead to believe is what makes us humans different are being crushed by the people with no humanity and who have the power to do it. This problem is systemic.

    This systemic problem is made possible by the policy that drives it.
    The policy comes from the Government policy.
    The Government policy comes from the Government manifesto.
    The Government manifesto starts as the election manifesto.
    The election manifesto containing the policies is presented to the public at the general election.
    If the public want the policies they vote for them

    It’s simple, the public voted to cut welfare benefits.

    So what’s the answer if you’re in my position. (It’s all happening on my watch)

    I think what we are all saying should be said together as one voice, I think the
    total number of voices are considerable and we should all sign up to this (no charge) .
    We then agree a mandate list of requirements that must be carried out (now) .
    This could include funding, a dethroning of social services and clarification of social service legal limits making them a service proper.etc
    This mandate would be presented to the main political parties prior to the next general election offering them the chance to pledge to include our demands into their policy in return for our vote.
    If no party agrees we withhold our vote.
    We all know that politicians are desperate for every last vote.

    Kind regards


    1. For our family it all started with the White Paper ‘Valuing People’. It was the biggest con trick ever played on the the weakest in our society by the most greedy, most academic ‘up their own backside’ group of lobbyists to our then government. Huge amounts of money was handed out to LA’s to modernise day services. (Nowhere in the White Paper did it specifically say close down day centres.) Our LA wasted thousands of pounds of that money in grand presentations on what they were going to offer our loved ones once they shut down the day centres. We were going to have 15 specialised units across the borough offering a wide selection of activities. By the time the closures were finalised they had 3. One of them a converted shop in a run down area with windows which were glazed over so one one inside could look out and no one outside could look in. A company offering non existent ‘indepence for the most complex’ took over a closed day centre and there was the use of a church hall. Shameful terrible lies were told to the people with LD and their carers. As I have blogged before the numbers of people with LD who were disturbed and worried and frightened by this ‘slash and burn’ of their day services were now being referred to the mental health services. Lots of them. These figures are now the elephant in the room. The people who are responsible for this tragedy are trying to ignore it.

      1. Pauline
        Did I read in one of your comments on Marks blog recently, that you have collected figures on depression and aggression, that shows an increase in people with LD? If so, would you please email for they would very much like to hear from you

  11. Well, Cameron et al handed the funds and power to the LAs-sold as meaning that LA’s could now have freedom to tailor services to local needs etc etc.Thus when various terrible outcomes are dragged to their attention they can be sympathetic (thanks) but say its really something to take up with our LA’s. There’s no central responsibility.

    Its a very well worn LA pattern to:
    1. Announce Improvements to a service-lots of extra stuff! Give the idea it will be as well as existing facilities.
    2. Shut down existing facilities-for something even better! Don’t be greedy! Hold a pretend consultation, having already decided this. Wave aside protests.
    3. After long delays and evasions, say that an inadequate and shoddy version of what was promised is all that can be afforded-besides its not inadequate and shoddy at all! It is streamlined!
    4 Put out an announcement that it has all been a great success.If there are suicides, say that the people in question were very well suppported and its a mystery why they didn’t avail themselves of the fantastic new service. Look puzzled, yet smug.

    i know that the bodies meant to represent us all-for us that’s the NAS or MENCAP- have to be careful not to be blown about by every case and quarrel. That said, we are terribly represented.When there’s a crack in the media which slights the LD, such as Johnson’s infamous “dud cornflakes ” speech, the NAS do nothing . In that example, they said they were appalled but don’t get involved in anything political-great if the Nazis return!. MENCAP put a pained letter on their website and put out a mild publicity release which was not carried by any media services.I am glad they at least tried, but we’ll never get anywhere with mild letters and groups of protestors with little placards having under- reported protests.

    We need better protest. We need representatives who will be on TV shouting, arguing intelligently, not letting any slur or injustice regarding the LD pass. When Edwina Currie says something dismissive about the effects of the benefts cuts I’d want someone from MENCAP hitting back with the facts pronto.When the poor man with ASD’s killer was given 4 years, I’d be wanting the NAS and/or MENCAP on the TV that evening outraged and threatening dramatic protests etc. Not a peep.

  12. Sally
    Spot on as usual.

    Where are the Council Members in all this. These are the people who vote in the callous Strategies and the cuts. These are the people who never sack for incompetence and/or poor management/leadership The main cure for both is usually to swing the incompetent etc over to another LA?. I said some time ago that they have do have hard choices: either lamp posts or lives etc? Pot holes or people.. But where are Council Members when things go putrid.. For example in the Long care ‘abuse’. (read John Pring’s most recent book and weep? – you will have). Calling the Long Care SCANDAL abuse, is total understatement – like calling terminal cancer a wee bug. The council chairman was still in post till quite recently, as were officers and other Council Members. The GP was handing out birth control like sweeties, to the most vulnerable while they were being sexually abused by the staff and managers. Was GP struck off…you know the answer. Why does the Government (all Political parties) walk away from these LA scandals; the in-competencies (Of Members and Officers) and abuses?. Why are these Members and Officers so Teflon coated? Hands up all who have tried to dent this? And how many of us can map the swampy LA complaints process through to snail pace limp Ombudsman trail, to receive the, eventual, ‘naughty naughty’ letter to LA. Show me your bruises and I will show you mine….where are the people who gave them to us and ours….guess…………………….?

    1. Weary mother I wrote to Mencap in 2012 with these numbers. They ignored it.

      In December 2011 I asked our NHS Foundation Trust to provide me with numbers of adults with LD and assessed as eligible for adult care services that have referred by the London Borough of Bromley’s Adult Services for psychological assessment for each year for the last five years. Their response in January 2012 ‘we would confirm the following, however we are unable to confirm whether they were asssessed as eligible:-

      2006: 9 clients
      2007: 32 clients
      2008: 75 clents
      2009: 35 clients
      2010: 71 clents
      2011: 45 clients
      TOTAL: 267.

      These were people who were going through a major shake up in their lives all of them LD and all of them referred to a psychologist by Bromley’s Adult Services. NHS staff now having to pick up the pieces from the LA’s shocking lack of awareness of people who needed and wanted stability in their lives, but instead became innocent casualties. I do not have knowledge of their symptoms, that is personal, quite rightly too, but I do know people in the community who like my son were under the care of the adult social services who were badly affected by this radical change to their lifestyle. I wanted the people I contacted to look at these figures and come up with a plausible reason for them, not just ignore them. If they do not look, they will not find.

      It would now be interesting to see if there is a rise in the rate of antipsychotic medication being given to these people with LD. Mencap and rich charities like them could so easily find out, but for some reason, only known to them, seem reluctant to do so. Why?

      Sally the reason why we are being let down by our councillors in the LAs is because they, like all the politicians that rule us are shameless. They have no moral compass.

      1. Pauline
        I posted it (your stats and lack of response from Mencap) on the choice forum and I got the reply yesterday from Mencap asking for the figures to be sent to them. They said they had not seen them,

  13. While this terrible government and the savage cuts obviously have an effect, I think myself that the problem is much more structural and complicated. Who ARE the decision makers who seem to be getting it so wrong, why, and what is going on?

    It seems to me there are two common threads here:

    The care that vulnerable people receive (if they get any) is sinking to appalling and dangerous levels.

    The people who know them best, and care for them best, are not being listened to.

    Richard, above, made some reference to “academic” theories. As an ex-academic, I bristled slightly. I think there are, perhaps, some excellent theorists out there who can contribute. The trouble starts when their theories filter down to those who apply them without much thought, intelligence – or care. Instead of being used to develop better care, they can too often be used as an excuse or a rationale for denying it. The arguments over Personalisation may be a case in point. No-one can argue with its aspirations, but it gets very distorted along the way to being implemented! Here’s your personal budget, now go away and get on with it – not our fault it isn’t enough, and spending it constructively is well-nigh impossible.

    To return to the question of parents. The structural problem there is that any parent who wants a strong say in the life of an adult child SHOULD, perhaps, be regarded as a problem. What gets lost is that we are not just parents, we are CARERS – with a lot of experience and knowledge that absolutely can not be negated or dismissed by professionals no matter how much general experience they may have of other individuals. We know our children; we know what will keep them stable and what won’t, what will work and what won’t. We should be listened to – not as some abstract courtesy, but because we know what we are talking about – as carers. As parents, we get dismissed as over-protective.

    When I did what you are doing, Mark, and took control of my daughter’s care regime, I made a decision not just to employ “trained” support workers. (Hung on to a couple, who knew my daughter well.) My experience with Agency workers had made me wary of the shifting fashions in “training”, when it was applied without much attention being paid to its affects on my daughter. Yes, dignity, autonomy, “choices” are important – but any chance of them being applied intelligently? Yes, my daughter is an adult, but her vulnerability and need for support to BE an adult is also relevant. To be honest, not 100% right as a decision. I have people who care, but understanding and expertise takes time. Better pehaps than the expertise without the patience to care though. (I gave them the CQC report on Slade House to read, and they were appalled – especially by the lack of eye contact and attention, never mind the rest.)

    To deal with what is going wrong – that is much more complex. There are good and caring people working as professionals – they don’t seem to be the ones who are running things. Clearly, organisations like Mencap care, but tip-toeing around the politics isn’t very effective. I share your disgust at the proliferating roles and the promotions.

    I have been down a complicated road in recent years, and I am beginning to think that perhaps the Court of Protection and the Mental Capacity Act might be one way of extending the safeguards that are needed. A complicated and confusing set up at the moment. Under the Act, decisions have to be issue specific, not a blanket “We know best.” I am my daughter’s Deputy, as well as parent and carer, and sometimes that can be useful. Some of the recent decisions do seem to take into account the individuality, and the humanity, of the Court’s “patients”. Cumbersome, expensive and ill-understood right now – but maybe potentially more useful than a limp Ombudsman? Asserting our rights as parents doesn’t work because we don’t have any. Asserting our ability to identify “best interests” because of our intimate knowledge and long experience might be more effective.

    Sorry if I am hijacking your thread here. There are a lot of excellent blogs out there, we are talking to each other, but we need to be heard by more widely.

    1. Liz
      I agree with most of what you say. But as an oldie,(who cannot any longer do all the personalisation/ care management stuff) who was a professional, researcher and academic/ consultant, I found that no matter what you have or who you may have been, there is always a’ who do you think you are attitude’ to carers. With regard to the theorist, however good, too often the theorist sees the job done with the paper published, pay cheque or PhD? The implementation (if the research is not just too obscure) takes balls,long experience, resilience a thick skin, and very well honed skill in understanding all the blockages in implementation.that include all the health and the social care ‘tribes’. Most of all it takes a funding top leader, also with balls, who does not repeatedly take his/her eye off the ball for another ‘flavour of the month’. nice idea. All of us who have used up their working lives pushing this particular pea, know all about all of this. …..and have the scars….

  14. Sorry, just one more thing: There is an important thing to underline here. We are all reasonable people. (I should not have to underline this)

    I am lucky, I have a very supportive (when he can with his own job, life etc and pre -uni teenagers to finance etc) son to listen to me. He knows that ten long wasted years ago I was stumbling around trying to get some understanding about was was happening to his increasingly depressed and shuffling etc etc (where he could formerly walk perfectly normally) LD brother. Then, I was a coherent well educated professional: rational, patient, curious;and I just asked why? Pleasantly and increasingly anxiously for years. I was told all was his fault and mine……..I was over protective etc……..And he was lazy etc etc (and worse) . Of course this was proved disastrously not to be so by me, and then the Ombudsman.

    When I talk to elder son of my bone ache sadness about not being able to protect his brother nor save his mobility and his long suffering, nor can I any longer have the energy or health to keep on asking nicely, he understands. But he says ‘mum, be careful you will be treated as Mrs Angry from Angryshire’. Those of us who sound like Mrs/Mr Angry, were all nice and accommodating and respectful….FOR YEARS. We are not reactionary or luddites. We are tired, angry – furious often, by the continuous disrespects, and, most…of all….very very worried about the current now – and the creeping up on us very oldies, of the cold dark black hole that will swallow our loved, unique, always vulnerable adult sons and daughters. .and it will be called care.

    1. Weary Mother thank you so much for your interest. I posted these figures on the choice forum years ago and Mencap denied then that they had received my letter. All I can say is that they saw the figures on the forum. Why are they still dragging their feet. There were the usual apologists from the Foundation For People With Learning Disabilities saying that these numbers could mean anything but no one offered to delve deeper. If these figures are replicated across the country then we have shocking proof that no one gives a hoot about the suffering of our loved ones.

  15. Pauline
    If you ask the choice forum administrator to forward how you get on with Mencap this time to me,,, I would live to know. x

  16. Just back from a meeting in which a palpitating person from the LA described…services integration! The flyer was full of carespeak howlers designed to make the LA’s role sound more epic. For example, they were not working towards X, they were “actively workiing on” X (How do you passively work on something ?.
    Liz you are so right. Yes, parents wanting to have lots of control over their mainstream adult children’s lives are probably over involved/have trouble with boundaries/don’t let them make their own mistakes etc etc. But we are carers as well as parents because our children are not able to look after themselves.Its a role with very little power and a Hell of a lot of unpaid work.
    That was the point I raisedat the meeting.I was earnestly told that there would be some workers who could provide some support to make me feel better about doing all their admin/payroll etc etc. I don’t want support, I want a good , reliable service which I can trust to work well to help my child. In the same way, if I want my son to go on, say, public transport, I want a reliable bus and a safe road for it to drive on. I don’t want the “freedom” of building, then driving a bus myself, not do I want the exciting personalisation of digging a road. Even if I am offered a comfy spade or a nice driver’s seat or a lot of supportive words.

  17. Liz, can I just say THANK-YOU for that thought on ‘carers, not parents’ – I am going to file that one for future reference because I think it may just be a secret weapon!

    1. The part of that which sent me through the roof was that on both sides, GP and Employment Benefits ,letters had been sent to someone who almost certainly, because of his condition, wouldn’t be able to open them let along take action about them. And this was known on both sides before the letters went out.
      Rather like the recent case-I am not making this up-of a blind man who was sent letters asking him to do XYZ or his benefits-given on the grounds that he was blind, note, would be cut off. And they were.
      The model is that everybody on benefits of any sort will have the ability to open, read, and respond to letters/emails or negotiate complex services which take understanding, record keeping, verbal fluency and assertiveness etc etc etc. Right. That rules out every person I know of with LD/ASD.They seem to have no idea of what LD/ASD actually means in terms of ablities.

      They are being asked to use skills which, by definition, they don’t have. Ah, say the apologists, there is support in those cases.Well, there might be-some-workers who could help with this. But people with LD/ASD no longer usually have named workers-certainly not in my Borough.Nobody’s job is to check what has come in and make sure that they are looked after and helped with this sort of admin.
      Instead, the LD are meants to call for assistance from a Duty Worker. That means they are meant to be able to open, read, understand remember letters or emails,listen to ,understand and remember phone calls, then call services, describe the matter at hand and make a time to meet to deal with this.Again, their conditions mean this is equally impossible.
      They all need a named worker whose job description included taking the initiative to ask about and check all such matters for the person, keep records of when the next review and so forth is due and make sure any future things are sorted out in good time.
      Parent/Carers do this. But we aren’t immortal. And after we go we have the fear of our young people in need.

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