Say Nothing

Still don’t get it.

As the JusticeforLB campaign gathers inspirational and very moving momentum, there are important pockets of the LD world that remain resolutely silent.

To be honest we shouldn’t be surprised by the response from Southern Health. They set out their modus operandi from the very beginning by trying to pass LB’s death off as “natural causes” and they’ve been as relentlessly shitty ever since. From the missing CEO to the latest dodge of waiting for the results of the inquest, they have continued to lower the bar to new depths of contempt. Image over humanity.

But what of the commissioners? I don’t even know who they are. I remember Sara Ryan getting hold of the leaked email a while back that revealed they were putting the blame firmly at the door of Southern Health but didn’t want to say so publicly for fear of denting the confidence in one of their major providers. That’s nice of them and shows which side their bread is buttered. Image over humanity. It’s cheering to know that when push comes to shove, you are backing your providers at the expense of the vulnerable people needing your service.

And where are the major charities? Planning their next conferences? Checking their funding applications? Who knows? They’re not supporting the JusticeforLB campaign in any meaningful way. This echoes my experience whilst Steven was held in the Unit. I couldn’t get any of them interested when I needed them. But after the Court judgement, you couldn’t move for them putting their twopennyworth in. Image over humanity.

And who is taking these dreadful assessment and treatment Units by the scruff of the neck. I’ve been trying to read my history on how these places developed but I must be missing something. They get discredited time and time again and yet still, they seem to be the prefered option of some commissioners. Backhanders? It can’t be ignorance.

It can’t even be about costs savings. I’ve just had all the final paperwork and figures through for Steven’s personal budget. It’s a very good package and covers 2:1 support when Steven is out and about, 1:1 support at home whilst I’m at work, 42 nights respite per year and his full transport costs paid. It’s comprehensive and not cheap. BUt it’s still 57% cheaper than the cost of a week in an assessment and treatment unit. What is it all about?

Southern Health, The Commissioners, the Charities – none of them come out of this at all well. BUt it’s useful for families and carers to know this. Good to know where we stand. And good to remember when it gets to National Carers Week and we see one of the big guns on the Daybreak sofa telling us what their organisation is doing to help their clients. Image over humanity.

15 thoughts on “Say Nothing”

  1. Brilliantly written piece Mark ,sadly it makes for depressing reading We really are “on our own ” aren’t we ?

  2. Absolutely. It’s vile, that the charities won’t stick their heads above the parapet with us when we need them. When we’re desperate, and morally and legally right, when our children are in danger, when our lives are falling apart – where are they? But a success – well, they can really use that, can’t they? X

    1. Mark you are so right. A long time ago I was told that owning a residential care home was the most profitable business one could run with very few risks, and if you read the contract between the provider and the LA you will see that it is a purely commercial contract. Commissioners pay out huge sums for services they know are not being provided. And why Wales it seems nearly everyone is sent to Wales? Including my son

      1. Hi Shirley. I dont know what it is with Wales. I think in our case, Hillingdon must have a block contract with the hospital/home because I’ve heard of other local people sent there. is your son still there? Mark

  3. And of course, Wales is trying to send people the other way (although in the case I am thinking of, the staff handled it so incompetently — arranging a meeting on the patient’s non-negotiable day out — that the institution in England filled the bed, which the person affected and their family were very happy about).

    I think the answer to “why Wales” is that it’s long been a heavily subsidised area because of the collapse of almost every industry. There is a lot of land going cheap and state support for various kinds of enterprises, and it’s more economical to situate things there than in much of England, especially the south-east.

  4. Mark and Matthew Yes my son is still there and I cant get him out. Ocean Community Services a subsidiary of Ludlow Street Healthcare a residential care home. Welfare Surrey Health Bucks and I live in Solihull. He has been in the residential care home for over 5 years under a MCA order.

    1. Oh crikey Shirley. Under the MCA, someone should only be placed on a DoLs for a year – how can he still be there after five years? And you,live in Solihull and he’s in Bucks? Thats miles away. So much for local services! I’m so sorry Shirley.

      1. Mark this is only a small part of it. He isnt even on a DOLS. We were in the Court of Protection for 4 years. I am now trying to get the judgments published so I cant discuss.I have spent tensof thousnds of pounds on lawyers. He has lived in Chalfont Bucks, Croydon, Kent, back to Chalfont, Amersham andnowCardiff (I dont know why this keeps on underlining sorry) He is in the home voluntarily they told him it was temporary. He has complex epilepsy Lennox Gastaut syndrome and the Court diagnosed him as autistic. His present GP psychologist and epilepsy consultat have all refused to do capacity assessments. The case is now back in the CoP (my son took it back himself) waiting (6 months) for me to be appointed deputy. Also in 2005 he was illegally sectioned – handcuffs and 2 policemen.

      2. Mark you are spot on as usual. The only people in the NHS or LA’s who get sacked are the whistle blowers all the other miscreants get moved around into other boroughs or other hospitals.

  5. Just listened to a man from Mencap on the Radio Oxford interview – and I am pretty furious. Having an open discussion on a mainstream programme like this is the kind of thing that might make a difference by reaching an audience who generally assumes that “people like us” have easy access to the things we need. I am sure the Mencap chap meant well, but reinforcing that completely false impression is not terribly helpful in a discussion of the dreadful things that can happen. His bland assertion that all we have to do is call a Mencap help line, and all problems melt away is so far from the reality my head feels like exploding.

    It isn’t much comfort to know that things are now getting so bad that people who are not like us are beginning to understand that it is a scandal. Most of them do think that their is a system in place, and it works – Mencap knows better.

    Theoretically, my source of support ought to be Scope – but I long ago gave up on troubling them.

    1. Liz I belonged to our local Bromley Scope and our local Bromley Mencap (my son had a foot in each camp). When our LA was closing the day centre facilities that both Scope and Mencap members were using and on the whole enjoying, it was Scope that was fighting our corner. Mencap’s Chief Executive at the time called us worried carers ‘dinosaurs’. I will say that our local Mencap’s workforce was good. They did care, but unfortunately they were being governed by people who did not. Mencap said quote ‘we cannot be everyone’s critical friend’.

    2. He was hopeless wasn’t he Liz. So bland and patronising. And worst – he didn’t get his facts straight. There were only five people on LB’s unit. It wasn’t a big hospital. The small ones can just as lethal as the big ones

  6. There have been documentaries on the banks, and other big organisations, If only someone out there will pick up this issue of the big charities; eg just what and who they are really in business for?

    Local Mencap has always worked for local people. At the same time these local ‘dinosaurs’, are doing all the local graft and paying stiff subs (for eye watering salaries – or will they go abroad too etc….?) to National office. There has always been more than a whiff of disrespect of the local groups and parents by these big chaps. This not a new topic. And at same time the local ‘luddites’ have carried all; and the leg iron stigma of holding their own children back. So choice; at home with ignored, aged, ill and frantic mum (who has seen it all) all too aware of all the hairy old myths of CHOOSING…to ‘keep Jimmy in ankle socks’, through ignorance.

    Or ………CHOOSING the option of sedation to the eye balls for ‘Jimmy’ in a big or small private
    ‘bin with the option/potential for crap care, in the leafy Shires miles away…… some of whom have very iffy reputations for nil monitoring.?

    Choice….mmmmmmmm, such a wide choice AND…… personalisation as well?

    Now which to choose?

  7. Mark-bland and patronising-the qualities most apparent in every single meeting ,in every single interview concerning the Learning Disabled. Possibly it is asked for in the job descriptions..
    (Desirable qualities:the applicants will show the ability to be serenely unconcerned and dismissive at all times. Patronising chuckles a plus.)

    I don’t expect MENCAP or the NAS to be blown about by every single row and quibble. I do expect them to collect the stats, give the feedback, present hard hitting examples of what goes wrong and how. They could say, how its meant to work is…but the sort of things which go wrong are…and the faults in the system or the model which lead to this are…
    They could get their mugs on discussion panels, (Ever seen MENCAP on Question time? Yet benefits for the disabled being cut are freely discussed on the show, most weeks.)
    They can be there to cry outrage. When Johnson gave the infamous speech likening low achievers to dud cornflakes why was MENCAP /the NAS not on TV shouting about the implications? .When a LD person is horribly treated, or killed where is MENCAP ? Anybody hear anything from MENCAP/the NAS about the poor man with ASD who was recently killed by a violent young man-who got a slap on the wrist? The vicitm had been trying to explain that the thug shouldn’t ride on the footpath. Just what many, many people with LD/ASD would do. Just the sort of crime which calls for the charities meant to be protecting these groups .
    In LD’s case, surely they should comment because its the model, the system which has allowed the abuse and his death to happen. Its not just a case of , say,one evil employee infaltrating a perfectly good care system, its a care system which lends itself to the abuse.
    Finally,they could give hard hitting descriptions of what a person with LD is like. That sounds odd-but so often the LD/autistic are described as if they are sort of mindless, emotionless teddy bears, or at the other extreme, very capable and resourceful people who are braying for the chance to have every aspect of their own care given to them.(Personalisation!)

    It is revolting that the Head of MENCAP called worried parent carers dinosaurs! Was he sacked? (Who am I kidding?) He should listen carefully to the fears and problems. If he thinks the fears are groundless, OK, explain why and listen to the response. Don’t insult.

  8. Mencap will never really criticise the system too much as they want to keep as much supported living business as possible. The aims/ideals on the Mencap website are lovely but not followed through in their business side. That’s all about keeping social services happy…

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