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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Rainy Days and Risk Assessments Really Get Me Down

Life’s Lessons 12  on Different perspectives on safety & protection

Today it rained. This was a nasty shock. Yesterday the local beach was so busy we couldn’t get served at the beach bar.

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Oddly enough, this made me think about attitudes to safety, protection and risk assessment.

Here a properly rainy day happens only now and again. A few days’ continuous rain merits much comment and discussion. Grey skies and solid, day-long rain are the exception rather than the rule.

As a result nothing is planned with rain in mind. (For example, the new metro flooded so badly it had to be closed and reconstructed.) Streets turn into temporary rivers. Things leak. Road surfaces resemble skid pads. Minor accidents proliferate as the driving population takes to its cars. The carless retreat into rainfall hibernation.

Yet, to Northern Europeans, it’s a mild wettish day, nothing to cause the slightest drama, at the very worst a minor inconvenience. No panic!

With regard to safety, however, the attitude is the complete opposite. Here, they only seem to pay any attention to risk, if you upset someone in the local council offices and they reckon they can fine you for it. They’re very short of ready cash nowadays at the Town Hall.

The side wall of our eight storey apartment block was painted by one man abseiling down it with a big paintbrush.  He couldn’t manage the front balconies, so the Community (ie Residents’ Association) President hired a sort of fireman’s lifting platform and got two of his pals to paint them, mates rates. No scaffolding, no harnesses, no problem.

An elderly neighbour, who took a couple of tumbles on her mobility scooter as she made her daily round of the village cafe/bars, was reluctantly persuaded to take up residence in the local care home.
Now a cheerful young man pushes her wheelchair up to the bar at lunch time. There is a vertiginous slope at the entrance, everybody smokes on the crowded terrace, there is nobody to help her (except the barmaid) to get to the toilet. I can’t imagine what a risk assessment would look like, especially as she is going there specifically for the purpose of consuming alcoholic liquor and calorie ridden fried food.

Last weekend at the beach I met a party of elderly nuns pushing their equally elderly wheelchair dependent charges down the rickety boardwalk to the water’s edge and some of them were smoking! (The charges, not the nuns!) Try doing a risk assessment on that!

Somehow the “protection” industry in the UK seems to have burgeoned into an oppressive, faux-legalistic, narrow-minded killjoy. In control-freak mode, public authorities seek to impose a tedious, long-winded, timorous value system on the powerless. Yet, if anything, we seem less safe where and when it really matters, like nighttime and weekends in hospitals.  Normal reasonable care and sensible attention to basic safety considerations seem to have gone by the board, buried deep in paperwork.

Personally, I’d rather be wheeled down to the seaside on a dodgy boardwalk by a doddery nun than stuck in a smugly safe, box ticked communal lounge with a booming television and a bored carer for company.

And now, I’m delighted to say, it’s stopped raining!

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On Smiling Villains and Beacons of Hope

Life’s lessons 11 on Betrayal, Hope and Staying Sane

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I always knew that people you loved died. My mother kept one photo by her bedside, the one of a beautiful child I never knew, the sister who died of meningitis before I was born.

I suppose I came into the world in a bid to take away some of that pain.  I certainly provided a bit of noise and distraction. I was never an obedient or obliging child. At the very least I must have tormented my grieving family in such a variety of ways, that they were diverted from dwelling on their sorrow.

In those days you didn’t talk about things. You just got on with it. I don’t know whether it was better or worse. 

When my father died suddenly I remember the teacher who drove me home saying gruffly “Well, I don’t envy you the next days, but we all have to go through it, sooner or later.” I didn’t need him to say more. I knew his words were kind. He was a good man and he had been through the war.

But now, coming towards the end of life, I think that sudden death is not the worst thing to bear. The hardest thing to carry with you, the hurt that defies healing, the lasting bitterness that weighs you down and oppresses your spirit, is betrayal.

So often in the posts related to Justice for LB you hear that pain expressed – that people, who should have cared or protected, betrayed the trust placed in them. They then multiplied the hurt of that betrayal by lying and denying their actions.

Grief, allowed to take its natural course, becomes liveable with in time. It is something we all have to face, like my old teacher said, and in one way or another we muddle our way through to a bearable sadness.

But the cruelty of having to struggle against the odds to establish the truth of a neglectful, untimely, preventable death removes the opportunity to come to terms with loss, obstructs the channels of regaining joy in life.

That the NHS, the service that once shone like a beacon in a naughty world, should be the monster we have to fight, is the grossest betrayal.

Yet somehow this fighting has to be done without losing our sanity. We have to be able to find courage for the battle and believe that we will achieve peace of mind in the end.

Sara has to talk to the Chair this afternoon. We wish her strength and discernment. He may well be a decent man lost in the mire of corporate spin.  He is trapped, restricted in what he can possibly say, but he deserves the chance to act for the good. Sara is giving him that opportunity. Let us pray he is brave enough to take it.

Nowadays I always speak to the people trapped in call centres as human beings. I say to them “Look, I know you have to say these things and it’s not your fault, but this is the help I need.”

It’s surprising how people can act well, when their humanity and the reality of their situation is recognised. Fortunately psychopaths are in the minority, even if it doesn’t always seem so these days.

When my first email account was hacked, I set up another Yahoo account and emailed the hacker at my own address. I explained I was an old lady who hardly went anywhere and that nobody would ever believe I was trapped in Lagos and needed £2000 to get home, so I would be really grateful if I could have my contacts back.

From some distant corner of the developing world he emailed me back to say he was really sorry. He was ashamed of what he was doing but he did the job to fund his way through college as he had no sponsor.

He sent me back my account.