A Month

Its been four weeks since I wrote my last post and its been a very full on four weeks.

Yesterday was day 107 of the #justiceforlb campaign. The final day. The first anniversary of LB’s death in that shithole of an assessment and treatment unit. It has been a very moving 107 days but yesterday was quite phenomenal, with so many people recognizing the importance of the campaign. I do feel hope. In the last couple of weeks we’ve had several of the great and the good wringing their hands and declaring that they are at a loss about what to do about ATUs and the future of the people trapped in them. The Winterbourne JIP has failed to bring about any meaningful change. Norman Lamb says the right words but admits he has hit a brick wall. This week I was invited onto BBC Radio London to discuss adult social care and one of the leaders from ADASS was on, also confessing his fears of the future. Its looking like these people can’t do it. I’m not sure the will is there. Perhaps the system can’t be changed from within the system. Perhaps it will be movements like #justiceforlb that change the social care world. The will, the passion, the energy, the humanity is there. I think we have to stop waiting for the leaders and the social care world to show its humanity. It ain’t going to happen. Apart from some isolated (albeit powerful) examples, I don’t see any drive from within social care to truly serve the people they are meant to be serving. Service is dead. The drive, the humanity is coming from the families, ordinary people and the legal world. Coming together makes us very powerful – we’ve already seen lots of examples of the system feeling very threatened by that power. Good. This isn’t the time for observing niceties. This is the time for action. I’m sick to death hearing about culture changes being needed. Sod organizational cultures – let’s start applying the law. The human rights act. The mental capacity act. If your culture means you can’t apply the law, in fact you break you law, then you’re not fit to do your job. Let someone else take charge.

On a personal note, I’ve found writing the daily #107days blog emotionally draining. I thought I’d got an emotional handle on 2010 but writing it all out again has brought lots of stuff back to the surface. It has also made me realize that I probably won’t be telling those stories again. They belong to history now. During the #107days campaign I’ve spoken at a few events as well as the radio interview. Most of what I was asked to speak about was the present tense. And that’s where my energy now lies.

Last week we went to Clacton. Steven has become much more nervous about things since 2010. When we last went to Clacton in 2000, when Steven was 11, he was like most 11 years old – full of adventure and wonderment. This year, he wouldn’t go on the rollercoaster. He got anxious if I went off somewhere on my own. 2010 was a harsh lesson for him about the unpredictability of life. On top of that, there has been Julie’s death to work through. On Thursday we went on the little land train and Steven reminded me that “mum got seaweed stuck in her costume” last time we were there. He also remembered Julie buying him a Cornetto at the ice cream parlor we stopped at. This stirs up strong emotional stuff, for which there is no answer but to carry on with love.

Pulling this post together, I guess I’m hopeful for the future for Steven, and for social care because the #justiceforlb campaign showed that you can have your guts ripped out but through love, humanity, downright common sense and a fantastic dogeddness, find the strength and compassion to fight on.

In fact, you need love, belief and balls

20 thoughts on “A Month”

  1. Mark
    You have provided space for some of us old timers to express our fears and anxieties and our present and past trauma’s, all relating to the disgraceful and dangerous ‘care, of our (now adult) learning disabled sons and daughters. Thank you.

    At no time in nearly 50 years as parent, do I have any recollection where (naked) LA Social Care leaders have come up with any real innovations or expressed visible challenge to the status quo. All is/has been rhetoric and revenue pleas. Once is a position of status and authority, so valued in LA’s, passion stops. People this myth of ‘person centred’ care. This was honest value base was repeated constantly by truly passionate people in the daily 107 contributions. But does not exist in practice, as we families know, outside these universities and in the passionately held beliefs of many very excellent practitioners.

    Care needs and plan’s are manipulated down, and are not delivered even where needs are agreed. The needs that are met are all Hobsons; relating only to cheapest or nil – eg nothing. Others are down right dishonest eg no building/coffee shop/in the park alone in the rain day, care.

    Deaf ears and the boss of it all, Norm, is just full of sorrys but no solutions.

    We all know all this in years of practice and pain; tee shirts and read the book.

    We oldies struggled for years from nothing services to something better. Old news…… .

    But…..It is about us parents again. We parents did it together last time. No one else will do it.

    We have to do it again …together. But wealthy ‘charities’, in our name, must jump right of the fence in our children’s direction, or get off it entirely. There are many of us parents and others who are still willing ( in spite of our many traumas and hideous injustices) to come to this challenge;

    on behalf of our children and those that will follow.

    This is now.

    1. Weary mother (and Mark) Today I have had an example of the depths to which the LA can sink. They removed me as appointee, and accused me of not paying the residential care fees. The DWP did exactly what the LA asked. They and the DWP have not broken every rule there is – for them there is no such thing as a rule or a law. I have all the evidence I need to what????? Take them to Court??????? Any one other than a public body I could take on.

    2. Nothing will change until we take the power away from local councillors. Local councillors are the people who employ social service chiefs. When reading the job description for the employment of these highly powerful, highly paid jobs it sounds like they want a cross between Mother Theresa and Jesus. If only. The grim reality is they want someone who can cut, by sleight of hand, the care that our loved ones receive, while at the same time painting the local authority in the best possible light. In other words cut cut and cut but never ever blame the council for anything. If they do cock it all up, they are out on their ear with a gagging clause a huge pay off and an introduction to do the same in some other local authority. Win win for everybody except of course for the poor sods at the receiving end of these disgusting, morally redundant practices which are prevalent throughout the land.

      What I find most distasteful and dishonest of all is the way the people on the ground, the foot soldiers if you like, are expected to close ranks when one or more of them do something that is not quite what is expected of them and it results in anquish for the person in their care. On many occasions my son would have felt so happy to receive a heartfelt apology from the staff, than the usual brush off and an accusation that he is lying. To never receive an apology or recognition leaves mental scars that go with them forever. Do you think Mark that Steven would have been less anxious now if maybe he had been given a genuine apology from Hillingdon and with the promise that it would never happen again? A genuine apology can bring closure.

      1. Exactly Pauline & Mark! I have written to our local MP (Andrew Lansley) asking him to seriously look into the malpractice of Cambridgeshire County Council. As you rightly say there is NO care, there are NO ‘care managers’ only ‘budget’ managers with absolutely NO care or empathy whatsoever. I have also written to Norman Lamb asking him why all his recommendations are being ignored by the LA’s. Just waiting for the answers!!!

        I wonder whether we could get a partition going on Change.org to have LA’s stripped of their powers and have to become more accountable. What do you think? There should at least be some kind of regulatory body to look into their practice’s.

      2. Pauline and Mark

        I am watching the Andrew Marr show. In the review of the papers there has been a discussion on the alleged cover up of alleged historic child abuse in Government. This was described here as ‘ the way the Political systems of this time’, were seen to be of primary importance and a cover up of this kind would be automatic.

        Protecting the system over people appears to be routine in LA’s and the NHS and this knee jerk misuse of power..smothers truth and justice. (Might be the place for Norman Lamb to begin to cure his feelings of impotence?)

        We are all reasonable people with hideous historic and current realities to share. But as the politician indicated this morning, the people responsible for those realities are rarely held to account, for the ‘system’ rules; people move on ….. fault and justice goes with them and problem solved.

        I am sure all children and other vulnerable people neglected and or abused by the more powerful, share/ed our feelings; isolated and alone and raging with internal anger and grief and pain and no one ever ever listening.

        I agree; reliving and retelling our own brain punching stories with the converted, is an understandable form of self abuse, it helps for a bit but in effect only disables us further. The only way to splinter and tear down this iniquitous wall……. is through the law.

  2. I think it has to be through the law, too. But Lord, what law! National Assistance Act 1948, Income Support Regulations, HASSAS – even the judges get lost in it! The new Care Act repeals that lot – and CRAG, and FACS, but it will turn out to be as full of holes. Lovely new rights, no money to fund them. After years of trying to make sense of the system, I was gobsmacked at how easily LAs can just ignore the law – because what chance do we have to take them on, when lawyers are so specialised and expensive? What answer do we have to There is No Money? Except to highlight the waste and the cost of the “system”. Arguing with those whose jobs and status rely on the status quo doesn’t work. So yes, the law and the politicians. Human rights and human suffering. Yes, us oldies have seen some things change for the better – but these are very tough times. Up against the “Not on my taxes” brigade, but also people, especially young people, who are ready to be outraged by stories like Connor’s.

  3. Mark- one of the major problems about expecting the social care / local authority system to change itself is that it very frequently and with impunity acts unlawfully and gets away with it because MP’s and parliament and the good and great are tied up with the ‘gagging’ . secrecy and illegal actions of our so called public services by the very fact they in lage ‘turn a blind eye’ to the breaches of the law by public sector staff / local authorities.

    Of course if us as families even so much as make a innocent mistake because we are struglling… we will be destroyed.

    The anger with the political structures and institutions will continue to mount and the state apparatchick will soon only be supported by those who work for the state and their own families as, more of us find ourselves in direct conflict with both their frontline staff ‘investigating us’ the overpaid management which controls.


    The voice will have to be those who do not support the current system in any form. Only wholesale change will change anything.

  4. Perhaps organisations like Mencap or Foundation for Learning Disabilities, just for example, could identify a ‘good’ case and take it to law. There are quite a few biggies to choose from. Parents etc are contributing them for assistance and advice all the time. I am sure we, the families/parents/fellow outraged, would dig in with our encouragement and help with costs…. as/and if we can?

    1. Weary Mother I am afraid that Mencap and the Foundation for Learning Disabilities have been busy turning their charities into business models while all these cuts have been taking place.

      They were the drivers for ‘Valuing People’. It meant they could secure more money from the government if they helped to change how care was delivered by our local authorities. In some cases it has been a success for people who could find work and I applaud that. However the demonisation of day centres have been an absolute disaster for many families, loved ones and carers alike. There have been a steep rise in mental issues in these communities and no one, absolutely no one is prepared to even look at the rise in numbers or attempt at doing anything about it. They have their blinkers firmly secured.

      The Foundation of Learning Disablities’ forum never ever prints my responses to other people’s questions anymore for the simple reason they cannot stand to hear opinions that do not mirror their own. Why are they afraid of honest debate?

      Jg I am going to second quess what Lamb’s reply will be. Firstly it will be answered by one of his minions and then he will tell you to contact your local Omsbudman as he does not have any power over your local authority. I’ve been there!

  5. Yes Mark it’s made me think too that it’s right to remember and record, but also that there is time for laying the past to rest. Peace of mind requires it. The present is demanding enough! All the very best to you.

  6. At last the penny has dropped Mark and you are beginning to realise what we have to do.

    This is in five parts
    1 Me
    2 Sara
    3 Mark
    4 Steven Broach/Kate
    5 Pauline Thomas

    My bit ……..
    Sadly Sara’s vist to the All Party Parliamentary Group on Learning Disability in the House of Parliament is just another load of window dressing following on from all the countless others before it. We have got to realise that it all comes down to finding
    ( bringing to justice ) the Controlling/Directing mind as they say in the Corporate Manslaughter Act. Until we do we are not going to stop this horrendous situation. There are so many parallels that can be drawn that give rise to overwhelming public outcry once they have been uncovered. This is another of those instances, but this one is a far greater National scandal and bears the mark of National shame that will never be forgiven.

    What is happening in practice is that when all this window dressing passes down to Local Authorities the Local Authorities are able to break the law or bend it using Judicial Discretion and get away with have a telling off or pay a nominal compensation (only to those that are able to mount a challenge in the first place and stay the course) rather than pay out the larger funding amount that is required. This is done at the expense of the vulnerable, and carried out with the use of sanctimonious, convoluted meaningless jargon.

    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” (Local Authorities/Social Services/Learning Disability Partnerships) 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.
    We are all going to carry on stressfully struggling through the ever increasing labyrinth of jargon and formulations, and bureaucratic hoops and stages, at the mercy of those despicable people that are exercising their discretionary powers this way, only to come full circle and end up back where we started, and having to repeat the whole stressful meaningless exercise yet again. All the while having to deal with an incredibly stressful learning disability lifestyle. Legally and morally we still have to go through the whole charade to verify our case even though the result is injustice. The RAS forms are rigged (by a person) with a factoring quotient that always gives a zero result !
    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.

    It’s simple, the public voted to cut welfare benefits, a term they understood as unemployment benefits by the way that pre-election discussions where always spearheaded. However, there is also a simple agenda, the Government is using the vote catching “get the unemployed loafers off benefits” and be like the rest of the “hard working people” by using the word Welfare as a Trojan Horse to include and cut Disability, Learning Disability, and Autism support funding.

    However, those hard working people are the same people that have sons, daughters, spouses, family members who are suffering disabilities and are struggling against this despicable agenda and the despicable people that are employed to carry this out in the name of “care”. According to Mencap there are approximately 1.4 million people in UK affected by learning disabilities. Add to this all the “elderly hard working families” that have or are affected by a son, daughter or relative with autism or learning disabilities and you have got a sizeable chunk of angry voters.

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

    The answer, in my opinion after a very long and stressful learning curve, is not to petition this Minister or that Minister, because they pass you from pillar to post and Parties will fudge and invent (expensive) commissioners, commissions or working committees that never conclude anything satisfactorily,

    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 an autism mandate list of requirements that must be carried out (now).
    This could include funding, a dethroning of Local Authorities judicial discretion and clarification of social service legal limits making them a service proper. etc
    This autism 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. If it is our moral duty to vote why would we vote for immoral representatives
    We all know that politicians are desperate for every last vote.

    Sara’s bit ….
    Sara has done a remarkable thing with 107 days, a rare and unique achievement, which has now crystallized a focus onto the so called guidelines controller/reviewers of the parliamentary committees etc and who she now realizes are completely despicable career clones. We are the people and the spirit of LB is us, we cant be snuffed out by them.

    Marks bit……
    Mark’s latest blog he writes the significant paragraph. –
    “I think we have to stop waiting for the leaders and the social care world to show its humanity. It ain’t going to happen. Apart from some isolated (albeit powerful) examples, I don’t see any drive from within social care to truly serve the people they are meant to be serving. Service is dead. The drive, the humanity is coming from the families, ordinary people and the legal world. Coming together makes us very powerful – we’ve already seen lots of examples of the system feeling very threatened by that power. Good. This isn’t the time for observing niceties. This is the time for action. I’m sick to death hearing about culture changes being needed. Sod organizational cultures – let’s start applying the law. The human rights act. The mental capacity act. If your culture means you can’t apply the law, in fact you break you law, then you’re not fit to do your job. Let someone else take charge.”

    Steve Broach/Kate Whittakers bit …
    I hope both Sara and Mark have read Steve/Kate’s ‘Using the Law to Fight Cuts to Disabled People’s Services’
    This paper is intended to help campaigners – including disabled people and those supporting them – understand how the law can be used to help fight cuts to valued services in their area. The paper is intended to be read by those who do not have a legal background.
    Further on they go on to describe the notion of the critical or substantial criteria of the LA’s. They also say that the only way in which a public body can lawfully stop providing a service to a disabled person is if a re-assessment is carried out which shows that the person’s needs have lessened or gone away. The only other way in which a public body may be able to withdraw services to an individual lawfully is if it has raised its eligibility criteria so the individual is no longer eligible (this was tried on our son, they tried to slip their own version of an assessment through as being the accepted one, crikey they know every trick in the book, in fact at every turn its a trick even down to insincere sincerity )
    See also the Law Commission Report recommendations on the Regulation of Health and Social Care Professionals
    So the conclusion is, taking Steve/Kate’s ‘using law’ (if permission granted) as the mandate we form a team (that word again) that will help bring together all the individual autism/ld complainants and vet their requirements to speak for each, with one legal voice to counter the LA’s legal games that they are playing in order to cut or avoid funding. “However, any individual or local group who is considering legal action in relation to actual or proposed cuts to services should not rely only on this paper but should seek specialist advice, including legal advice”, which we can do.

    I agree with Pauline Thomas comments that the big charities have left us and the real world and platitudes from non affected people about the situation make me very angry. I am determined to fight them the LA’s, they operate by not being transparent and having what they hope is a hidden agenda. But we will make them aware that we represent all the complainants and that we represent a legal line drawn in the sand, that we know in advance where the are trying to go with their tactics and that we will name and shame each of these serial offenders. I realize there will not be a quick result, but we are relentless. So I would hope we could meet to plan to pool our strengths to push this agenda into action. Better together otherwise they will sanctimoniously try to pick us off one by one. Its up to us.

    1. If you actually thought of including the full range of vulnerable who are in need of serious care / support e.g. disabled people/ people with dementia etc. the ‘force’ for mounting a public outcry- after all it is likely to be ‘them too’ one day soon, will be enormous.

      Having a silo mentality with respect to the monumental change required, including the complete change of current politics and institutions controlling those of us who are actually caring in circumstances none of them will ever have to see, will lead no where. A bit of a tinker here and there is no longer what will make it clear who is actually offering care and at what cost.

  7. Mark, thank you so much for all your own contributions to justiceforlb, for being part of that wonderful cause.
    I thought of you and all your blog followers last week. Bad week for my son with lots of problems with behavior and current arrangements tottering. I met with a-senior, experienced-social worker from the DCT. I stupidly became emotional and said how terribly worried I was about my son’s failing educational arrangements and his future as an adult-the risk of a dull meaningless life, neglect, exploitation, assault, my fears that I will be an old lady with a distressed young man in a miserable state etc etc. She waved these fears away as if I had got it all wrong. No, no culture is changing! People with ASD will be accepted! New initiatives are coming in! There will be a transition group for young adults! And so on. All the vague promises would come to light, nothing would fail, my son with no named social worker would still be tracked, helped etc etc.
    At that point I felt that one of us must be insane. I hoped it was me, I wanted her to be right about the way things will be.

  8. […] Each and every one of you who have contributed to the #107days campaign has inspired us, and renewed our hope, that there is a better way and it’s in our grasp. We aren’t waiting for anyone’s permission to shape it either. For those who have been asking #107days is over for 2014, but #JusticeforLB has only just begun. We will continue to update this blog, twitter and facebook, from time to time, and while the days of action have completed, you are welcome to continue to use the blogs to debate and discuss things. In the words of Mark Neary: […]

  9. Sally
    We too have had a totally shit week(s), yet another life threatening crises caused by nil/zero/zilch support for health care or crises. I believe on the evidence (of us having to step in again and again and again) that the LA is casually breaking the law. The care managers are going off sick with stress. It is not just us and ours lives that are being destroyed. When people who knowingly accepted employment intended to cut care costs say ‘no more’….what further proof do they (LA) need. A new young physio has been appalled at what he is seeing, and contacted me on Friday, but he will learn?
    I wish I could say it is us who are mad, but cannot’ it is the sodding ‘system’…….and the people who make it so.

  10. What we are up against is the discourse of “limitless need, no money”. But we are asking for basic provision, not the moon. How much does it cost to barricade access to what funds are available? We need some outrage from those not yet up against it about the lunacy and expense of the systems working badly.

    The Care Act is going to cause expensive chaos.

  11. Mark, just read your blog again and had a think. Isn’t part of what we are up against society’s dislike of non (financial) contributors?There’s a hierachy for those who don’t earn. If they have “paid their dues” so been in employment they are regarded as so much better than the slackers who never have. And here we have the learning disabled, a group of people who are most unlikely to ever be able to earn enough to keep themselves and will require expensive care for the rest of their lives. Boo!
    I have noticed a rather nasty hostility in the views of others about the learning disabled. There’s the old superstitions that its somehow catching or says something negative about the family, but there’s now also the slight resentment of us asking for anything, of asking for more.
    I have been told-by the Head of OT “but your son has already HAD a lot of OT” in a fury.I have been told “but he’s receiving the top level of”-even when the top level is pathetically small.
    I have been asked again and again “Did you have tests?”. The suggestion being that I could have been tested for my son’s condition in pregnancy and so our plight was my fault.Or my hard cheese.

    Our situation is that there is no endpoint. We are asking services for the ultimate non reward for them-providing for a group who can’t get better ,who can’t pay back. No matter how much they blather about brief interventions and independence that’s the reality.The money will only go in one direction.And that just doesn’t fit with the way society runs at present.Listen to Boris’ “cornflakes” speech.

    I don’t think the DPs etc help us at all. If our young people had nice places to go in during the day which were safe, interesting, engaging..if those who could manage had some cheery sheltered employment or training places..if there was a programme of interesting outings..if the LD and their famiilies were encouraged to have a say in what these services put on and so boost a sense of community and ownership..well, it would be joyous, and also we wouldn’t shouting and scrabbling for funds.We wouldn’t be copping so much disdain.I have the feeling it would also cost less than this horrible system.

  12. Witness the Tory Torbay councillor recently (allegedly) mourning the demise of the workhouse.

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