Campaign? What campaign? Am I bothered?

 

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.

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

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Better Pens Than Mine

This week I’ve been listening to Dickens again in my audiobooks. I listen when I wake up at night and get bored. Usually they send me back to sleep, but this time a passage woke me up instead.

It was this extract from The Old Curiosity Shop

” Grandfather, what was that you told me? That if they knew what we were going to do, they would say that you were mad and part us? Grandfather, these men mean to carry us before some gentleman and have us taken care of and sent back.”
“How, dear Nelly, how? They will shut me up in a stone room, dark and cold, and chain me up to the wall, Nell – flog me with whips and never let me see thee more.,”

Dickens was writing in 1840.

This week in England, Thomas, 20 years old, died. He had learning difficulties and had been in an Assessment and Treatment Unit (ATU) miles from home. He had been abused by carers in the past and, when admitted as an emergency to hospital this week, had unexplained carpet burns on his back. His family had been desperately trying to enable him to be cared for in his own community, not separated from the people he loved.

This week a report was also published giving details of the thousands of people with learning difficulties kept in ATUs. Many far away from home, cut off from their families. Many existing year after year, never going into the outside world. Many, it gradually comes to light, ineptly and cruelly treated.

The report’s authors were writing in 2014. 

When I googled The Old Curiosity Shop one commentator described it as a melodrama, too exaggerated for reality…

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.

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.

It Was Always Thus

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.

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.