Category Archives: Learning Disabilities

Campaign? What campaign? Am I bothered?

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One day, idling around Facebook, I came across the story of LB, the Laughing Boy who grew up into a handsome teenager and drowned in a bath at a National Health Unit, where he was temporarily staying for assessment of his needs.

 

Even somebody like me, with no specialist knowledge, could see this was wrong.  My heart went out to the family.  I wanted to support them in finding out the truth of exactly how and why their beloved healthy son could possibly have died in this way at 18 years old.

 

I was able to help because LB’s family and friends organised a do-it-yourself, hands-on, make-it-up-as-you -go-along, online campaign.  This highlighted the struggle of an ordinary family to get help for a son who needed a different kind of care from his brothers and sister, especially as he became an adult.

 

He wasn’t ill.  He simply had two conditions that could perfectly well be lived with.  He was autistic and he had a form of epilepsy.  Neither should have killed him.

 

Yet the Health Trust responsible for his care said he died of “Natural Causes”

 

This was a lie.  The online campaign (Justice for LB) raised £26,000 to pay for legal representation for the family and after two long years an inquest jury agreed that it was a lie.  They said Laughing Boy died because of neglect in National Health Service care.

 

Not only that.  His campaign uncovered that there had been many, many other deaths, which had never been investigated.  National Health Service (NHS) procedures made it almost impossible for families ever to find out the truth about how their sons and daughters had come to die in National Health care, years before their time.

 

Health professionals who tried to tell the truth about NH services were called “Whistleblowers” and were gagged and/or driven out of their jobs.  Family members who persisted in protesting about poor care were victimised, harassed and even forced to leave their homes.  They lost their life savings in legal costs, attempting to uncover the truth.

 

Many families had just wanted to be able to care for their children, even when they became adults, at home.  Why couldn’t they?

 

Because the organisation of the care system in the UK made it well-nigh impossible for them.  The support they needed wasn’t there.  It was a long, complicated battle to get their children’s needs acknowledged and to find funding.  Procedures were confusing, over-complicated, constantly changing and poorly understood, even by those administering them.

 

Any provision of care was patchy and inflexible.  Your son or daughter had to fit in with whatever was available wherever you happened to live.  Parents and siblings became ill and grew old.  They became poor, because they couldn’t work at the same time as caring full-time for a family member.

 

The whole UK care system became a clunky mess.

 

This is the situation today.

 

This is what we campaign to change.

 

The challenge is to get lots of people actively involved in making good changes happen.

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LB’s Justice Quilt stitched by his supporters & displayed in Coventry Cathedral this month

Expelled from Eden

Myths are powerful.

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Since I’ve been part of Justice for LB and have come to know the other individuals or families involved, I’ve been increasingly struck by the similarities between professional attitudes to the learning disabled and to the old.

Mark Nearly and Sara Ryan point out how those with learning disabilities are regarded as somehow less human, so that their rights are seen as quite OK to overlook.

Well, I’m sorry to tell all you younger folks that it’s becoming worrying similar the older you get. Fear and dread of “care” is rife amongst my age group because, like the learning disabled, we oldies tend to have, or develop, complex medical needs. Older people are also seen as not worthy of certain categories of treatment.

I’d hoped that some older campaigning groups might see it politic to join forces in supporting the learning disability lobby, but possibly active Golden Oldies are too busy making the most of their lifetime’s Indian summer, or it’s just too uncomfortable to confront the realities of being vulnerable in the UK today.

Or perhaps, at our age, we just hope to be mercifully carried off before it comes to that.

When I was young I used to be part puzzled and part amused by my elderly Irish neighbour who used to pray diligently for “a good death”.

Now I find it horrific, that decades later, my generation should do the same, not because of lack of medical knowledge or facilities, but on account of a cruel, systematic downgrading of the rights of the vulnerable to decent, humane consideration.

And it is the cynical abuse of power by the authorities charged with our “care” that induces such disillusion and despair.

I can only liken it to being thrown out of Eden after eating from the tree of knowledge.

But, in our case, the knowledge we have sadly gained is of inhumanity and naked corruption where once we had trustingly believed to find honesty and a desire to serve.

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Thomas, fighting for his life

The avoidable deaths of two young Learning Disabled adults in institutional “care” in the UK last year jolted me out of comfy retirement into social media campaigning. (#JusticeforLB and #JusticeforNico).

The learning disabled, the dementia impaired, the frail elderly, the mental health patients in “community care” are routinely neglected, abused and sentenced to unnecessary, untimely death by the mismanaged, overstretched, underfunded system in the UK today.

Government at best stands by looking solemn and “learning lessons”, or at worst actively blocks change and punishes whistleblowers.

Another case today. Another suffering family. Another tortured child.

A whole load more

Today I planned to go to a CPA meeting as an advocate. Thomas is living in a specialist setting miles away from home and against his own and his family’s wishes. Lots of people are working together to support the family to negotiate an impossible system that is blocking every attempt to get Thomas close to home.

This weekend his family noticed unexplained injuries. On top of that he was struggling with a chest infection that they knew was serious. Families know that stuff, born of years experience of loving and caring for their son, and we all know how important it is to listen, don’t we?

It seems that the lessons learned, Death by indifference, Connor Sparrowhawk, Nico Reed….. a list too long to name each individual, have not been heard.

Thomas collapsed on Sunday night and was given CPR. He has sustained massive brain injury, his heart and…

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The Bonny Blair Award for Cupidity, Spin and Evasion

The Clear Winner by a Country Mile.

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Since first getting involved in the campaign to win Justice for LB, I have tried to believe that no hospital trust could be entirely without principled leadership. I kept hoping that somewhere in the management and governance of the organisation, there had to be somebody who was prepared to ask awkward questions and not be satisfied by generalities, corporate spin or glossy awards.

I admit defeat.

I’ve seen a lot of burying bad news and economy with the truth in my time, even been party to it on occasion. I’m no saint.

But even I cannot credit the calculating and bare-faced shamelessness of the treatment that LB’s family have experienced from the Health Trust responsible for the preventable death of their healthy son.

LB’s “mum” – never referred to respectfully by her professional title, Dr Ryan – was an immediate target for undermining and defensive suspicion. She committed the cardinal sin of having an honest, outspoken blog, in which she from time to time used strong language. She was also outspoken about her grief and distress, and refused to see these as unreasonably extreme. She didn’t want to be helped to conveniently “move on”. She howled and stormed online.

No wonder she was identified as a dangerous hazard. She and her sympathisers had to be silenced, obstructed and discredited at all costs. Surveillance called for!

As her spontaneous campaign for justice sprouted and grew, other worrying data and cases came to light. This does not seem to have alerted anybody governing the Health Trust to the likelihood that something, somewhere in their organisation was badly wrong. Rather it gave rise to renewed efforts to fight off any such suspicion, by fair means or foul.

So where does the story end?

There’s still a chance for someone decent at the Health Trust to suggest an alternative approach.  Something other than rendering life so unendurable for grieving families that they give up and go away.

I would love to think it might be so.

Other than that it’s the long slog through all the legal procedures to force the Trust, kicking and screaming every step of the way, to face the fact that the award they most richly deserve is the one in the title here above.

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It Was Always Thus

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As I follow Sara’s terrible account of her slow ongoing torture by the Health Trust whose systems and employees caused her son’s preventable death, I am continually reminded of Dickens’ Bleak House, the first book I studied when I went to university.

It might seem a depressing choice, but it is a good preparation for dealing with the law and other public bodies.

Sara, in her last post, asked how people experience working for public services today.  I fear many of them would recognise Dickens’s Court of Chancery all too well. Cases drag on interminably,  “complainants” become increasingly desperate, their anger either fading into depression, or taking over their lives to the detriment of every other facet of their existence. Relationships break down under the strain.The only beneficiaries are the legal firms growing fat on fees.

Yet today’s LA and Health Trust employees surely cannot be likened to the miserable clerks inhabiting Dickens’s dark world, aware of the situation and sufferings of their clients, but powerless to make any change?

While today’s offices may be brighter and have more ergonomically designed seating, power relationships still remain the same and all the information technology in the world doesn’t change that. Basically, just like Bob Cratchit, employees do what they are told. They know from the example of whistleblowers that, if they don’t, all the employment legislation in the world won’t protect them from being rendered unemployable.

In any office there are nasty people who will take advantage of every regulation and directive to be deliberately obstructive, just as there are others who will do their best, within the constraints of their situation, to be helpful. The majority simply grow indifferent.

That is why #deathbyindifference is so accurate.  Indifference is the default setting for any institution where the majority of employees feel little commitment or calling to their work, where they are powerless to change things and/or have cut-back practises imposed upon them. Patronised (at best) by their employer through tawdry rewards and dumbed down “training”, they soon grow cynical and bitter.

No amount of external inspection or internal paperwork can safeguard clients if the workers simply don’t care. Situations go wrong because nobody bothers to check or to follow up some concern in a timely fashion, or to make sure some point of information was accurate. In the end, somebody lies dead.

In Bleak House Dickens decried the indifference of his own day

Dead, your Majesty.  Dead, my lords and gentlemen.  Dead, Right Reverends and Wrong Reverends. Dead, men and women born with heavenly compassion in your hearts.  And dying thus about us every day.

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Yet we don’t live in Dickens’s times. Change has been made for the better. It was brought about by the determination and campaigning of individuals who cared. Those who campaigned to force the law to take children out of the mills and the mines, to free the enslaved, to educate the poor.

In JusticeforLB, and JusticeforNico, we have a campaign for our own age. It is daunting and depressing at times, but we tread in the footsteps of all those who battled against the entrenched practices and injustices of the past.

It isn’t easy.

Fighting for the little people never was.

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On Injustice, Exhaustion and Tough Love

Life’s lessons 10:  Hard choices for hard times
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I used to think that, if people only knew about something going badly wrong, they would mobilise against it.

But I grew up under the lingering influence of World War 2. We were the brave little island that had held out against the evils of fascism and set up free universal secondary education and a National Health Service. We were the dragon-slayers.  We were the good guys.

Postwar childhood games, played out on overgrown bomb sites, always involved shooting down the bad guys to emerge victorious.

It took me a very long time to realise that knowledge alone doesn’t stop bad things happening. You need courage, spirit and commitment to confront monsters.

After reading Kara2008 (whobyf1re.wordpress.com) this morning I got to thinking about LB and all the others killed or damaged by health professionals in one way or another. I’d bet each one of us has experience of family, a friend or colleague affected. There is a stack of anecdotal evidence around. There is research evidence too. Think of the data circulated to hospital trusts about death rates. Think of the number of civil cases instituted against them.

We all know at every level that something is badly, systemically wrong and also that nobody, apart from a handful of lowly scapegoats, has been called to account.

As a teacher I had to call various culprits to account.  I remember one stubborn, little red-haired toughie, who had stolen some money from my purse. I usually kept it locked in my filing cabinet but I had been called out of my office suddenly and hadn’t stopped to turn the key.

I saw the set of her jowl and knew it was pointless to rage or accuse. The evidence was incontrovertible, but she would never back down. Then my anger and frustration lifted. I felt very sad for both of us. I asked her to imagine that she had done it. We would think about it as a purely hypothetical situation and consider the possible outcomes.

I can’t remember the detail, but at one point she protested that if she was able to walk away uncondemned, nobody would know anything bad about her.

“But that’s not true, is it?” I pointed out. “Somebody would know, wouldn’t they? Think about it!”

She thought.  “I would know,” she said at last.

And that was the thing that mattered most. Not the money. Not the punishment. Not her admitting anything. It was her looking honestly at herself and deciding what path she wanted to walk down. Did she want live a life based on feeling clever and pleased with herself for doing somebody else down and getting away with it? It was her choice to make. 

And, this morning, it seemed to me that, at an individual and systemic level, the NHS has reached a similar point.

For a range of reasons, individuals collaborate or collude with bad practice and organisations block or stifle concerns, protests and avoid the investigation of incidents.

Yet I can’t believe that the majority of workers in the system are happy about it. I can’t believe that the majority of managers are workplace psychopaths. I can’t even believe that the majority of elected representatives in the Commons are smugly complacent about it.

So why is it happening? 

I said at the start that you need strength, spirit and commitment to change bad things and it is clear that many within the system are too worn down to do it on their own. There are outstanding pockets of good practice, scattered examples of excellence, honourable individual practitioners, but as a whole the NHS is failing.

We have to help it envisage the way ahead, not just as a financial and organisational spreadsheet, but as a moral choice. Who really wants a shoddy, showy business, lacking integrity, getting away with minimum standards by the skin of its legal teeth?

We on the receiving end have already tried to highlight the need for an honest look at realities, rather than spin.

We’ve tried “consulting” nicely and so far it hasn’t worked.

I fear it is going to take a conviction for corporate manslaughter to strengthen the good guys, inside and outside the system.

In the sixty odd years from post war optimism and good intentions, it has come to this.

It should make us all very sad.

Then we should look at LB’s quilt and commit ourselves anew.
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This Is For All The Little People

Life’s lessons 8  Beware of the “I” word

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Sunflowers for Nico today – Nico who died because the basic routine care and therapy he needed to keep him alive were not provided.

Make no mistake, they had been allocated funding from the money you and I pay all our lives in taxes. But, at every level, the organisation of how that money was spent was so confused, and the process of ensuring he received the support he needed so convoluted, that his young life was ended.

We do not, and cannot, know the detail, because the inquest process is so slow, especially should the organisation responsible for his care fail to provide the required documentation.

Nico’s story and Connor’s story ( mydaftlife.WordPress.com) need to be viewed alongside a letter sent by Katrina Percy’s letter to Connor’s mother. This encapsulates just why the current NHS situation is so desperate.

In this letter the “leader” of the Health Trust states she cannot be influenced by the views of any group or interest, no matter how loudly they protest or how much long they persist.

There is absolutely no recognition given to the possibility that a group or interest’s protest could be valid. They could be shouting so loud and so long because something is very wrong.

No – that doesn’t come into it, because she has to act “in the interests of all parties”.

Please pause to think for a moment about the implications of the statements above

In management, as in life, some parties or interests are right and some are wrong and some are a bit muddled and hard to sort out. If I had preventable deaths occurring in my line of business, I’d want to be doing a bit of sorting.

And remember, this is a letter addressed to the mother of a healthy young man who drowned just one year ago in a bath in an institution her organisation ran.

It is written to be shared with the family’s supporters, who are fundraising to pursue this matter through legal process, as the only way to ensure that proper accountability can be achieved.

It is written for sharing with any other patients, care residents or their relatives (like Nico’s family), who group together to try to raise issues or protest about how their beloved children, or friends, or parents have been, or are being, treated.

The message is clear. Don’t bother, because it’s being placed on record that the leaders won’t be swayed. Their word is law, though you’re welcome to come in for a cosy little chat now and again.

The letter says the organisation is doing lots of things right and has lots of hardworking employees. I’m sure it has. That’s not the point.

As far as the NHS trust is concerned, we, the little people who pay the taxes, are regarded as no more than vexatious complainants.

Our views are there to be mocked in the office amongst colleagues, our reputations disparaged and insulted, our concerns glossed over and, wherever possible, silenced.

Practically every paragraph in the letter begins with the word “I” – “I believe this or that”, “I support this or that”.

But it is not about what one individual “I” believes or supports.  It is about best and rotten practice. It is about taking proper, justifiable pride in a job well done and facing up to a botched one.

It’s about right and wrong.