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
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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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This Ain’t Just Business, It’s Personal

Last thing yesterday, before I got into bed, I read Sara’s blog.  This morning I woke up realising, that for all my Grannie wisdom, in the past I’d been wrong.

You see, I’d always hoped that the whole sorry Sloven business wasn’t just aimed vindictively at one person.  I’d very seldom come across such actual malice during a lifetime’s experience of working in various branches of public service.

I’d come across plenty of bad practice – sloppy procedures, chaotic administration, hopelessly out of their depth managers, arrogant trend-driven consultants, sheer basic incompetence and plain simple idleness.  All of these were bad enough, but at least they were open to remedy, given the will, the time and the determination.

And of course families caught up in such Kafkaesque nightmares suffered, but they weren’t targetted.  They were a sad, innocent part of a big mess that needed sorting, and at one time many people entered politics, or the public services or local government, in the hope that they could help clear it up.

My Dad was one of them. He wouldn’t even accept a bottle of whisky at Christmas in case it looked like corruption.  Having taken on the job as a young man in the Depression, largely because it offered security,  he faced up to a career of sorting out corporate mess. He never made a song or dance about it.  He went about it quietly and steadfastly, simply because he believed it was the right thing to do.  

As I read Sara’s latest blog, I had to admit that my Dad’s world was dead.

A public service, part of the NHS, could whine about criticism from a bereaved family, and seriously cite this as a reason for not carrying out their own procedures efficiently. It was this that finally forced me to see that the principles my Dad lived by have become things of the past.

Nowadays, like some D list celebrity complaining about her Twitter following, a public body states  (and presumably believes) that social media coverage of a preventable death is somehow unfair to them. 

They choose to home in on a single blogger, one honestly outspoken citizen, as the unacceptable cause of their staff problems and their procedural difficulties.

So I apologise to Sara for ever doubting that the treatment of her family was more than awful indifference, maladministration and incompetence. I finally have to admit that the only rational explanation for the intransigence of the Health Trust in consistently laying their failings at her door is that they seriously believe her to be at fault.  They resent her stubborn unwillingness to be silent in grief, her friends’ determination to meticulously research and record corporate failings, the support of all who campaign and fund raise on her behalf.  All these people must be in the wrong and Sara Ryan is the wicked ringleader who stirs them up!

This isn’t just business, it’s personal.

Welcome to public service in the UK today!