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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Vacancy -Monster Fighting Change Agent Required

On “turning things round”

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Before Florence Nightingale, “nurses” enjoyed a deservedly dodgy reputation.  Dickens, always plugged into the popular culture of his time, knew what he was doing when he created the ghastly Mrs Gamp and her dreadful friend.

Caring is a role that brings with it a very dark side. It is dangerously easy to take advantage of the weak and the sick.  It is so simple to blackmail or terrorise them into silence and acquiescence. 

The vulnerable quickly learn that, to get even half decent treatment, you have to be “good”. And good is always defined by the care provider as giving your  “carer” an easy time.

It was bad enough in the past, with gin-sodden, slovenly Mrs Gamp, but now we seem to have created something even worse: a whole monstrous system which is based on not giving the care provider a hard time.

Whether it be the Hospital Trust or the Local Authority or the judgemental Social Work Department, we little people are blocked from attempting to criticise or question. As patients, clients or employees, we are expected to be “good”: to be quiet and compliant; to accept without complaint every idiocy of chaotic administration; every petty cruelty of poor organisation; the endless esteem-sapping disrespect and indignity.

Because otherwise we know we’ll suffer, in body, pocket, mind or spirit, or any combination of the above.

Now Florence Nightingale was a ferociously determined and successful change agent, but she also had a good few things on her side. She was well connected, with privileged access to people of power and wealth. She had a highly successful market image, a sympathetic press and popular support. She was not a little person.

How are we little people going to fight our newly created monster?

I’ve seen institutions change, but it’s a big ask, as they say nowadays

1. You find a leader with determination, endurance and integrity.
2.  You get a board/cabinet/party/pressure group to back her/him.
3.  You get rid of the bad staff by (a) making them work (b) dragging them through disciplinary procedures, tribunals etc.
4.  You promote and reward the good staff, so that the balance of power & influence in the workforce changes, with good practice becoming the norm.

A big ask indeed! We’re going to need a monster fighting change agent, to battle alongside us little people.

Any good politicians out there any more?

Anyone with principles and a bit of backbone?

Situation vacant.

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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.

This Is For All The Little People

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

image

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.