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.

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.

Learning from #JusticeforLB

Open Letter to Sir Stephen Bubb

Dear Sir Stephen,

Over the past four months, as an outsider to the debate, I have been given the opportunity to listen to the experiences of adults with learning disabilities and their families.

I have learnt much through involvement in two on-going campaigns to achieve accountability in cases where young people in institutional care have died.

Much strong opinion has been expressed by those with learning disabilities, their families and the research community, that institutional care cannot meet their needs.  They argue that they have an equal right to family life under Human Rights legislation. Anything other than that is discriminatory.

With regard to the unsuitability of institutional care, I have noted these key points:

1. Inconsistencies in Care
Many people react badly (challengingly) to any sort of change, which is difficult to avoid in a staffed institutional environment. As a result they are classified as problematic, subject to heavy medication,  restraint and identification as a risk to themselves and others. This leads to long term incarceration in an institution.

2. Disregard for Family Input
When they reach 18, learning disabled people become adults, so it is all too easy for their families’ opinion to be sidelined. Their detailed, in-depth knowledge of the person’s background and needs can be ignored, undervalued or disregarded by paid carers and professional personnel.

3. Quality of Staff and Management
To put it bluntly, sadists, bullies and idlers find working with the vulnerable attractive. This is especially so when their skill set does not enable them to find better remunerated employment elsewhere.
Once trapped in an enclosed institution with no protection from family or friends, people with learning disabilities are at the mercy of such staff.

Even in a less extreme situation, being dependent on disinterested or careless staff makes life hard to bear. It also increases the likelihood that you give up trying to do the things you attempted or enjoyed in a different environment.

(Poorly motivated staff can’t be expected to make life in an institution an enabling or positive experience. Consistently good care demands staff be properly supported, managed, trained and offered a financially rewarding career structure)

The image of a small unit offering intelligent, imaginative approaches to individual care is superficially attractive, but many in the user community do not feel the same way. They want the independence, choice and individual approach that an institution cannot accommodate.

3. Waste of money
Institutional care is expensive.  If the user communities say it does not meet their needs, then the money given over to their care is being wasted or mis-spent on this type of provision. 

My overall impression is that decision and policy making bodies are seen as too limited in their vision of how care for learning disabled adults can be managed, thinking in terms of buildings and professional organisation, rather than flexible approaches to community and family based care.

Highly paid executives are also seen as remote from the realities of the lives of learning disabled adults and their families.

I would like to believe that the gap between these different perspectives is not insurmountable, given good will and honesty on both sides. 

With best wishes

Grannie

Lesson 38 – Listening to the Quiet Voice

Lesson 38 on What Danielle Taught Me

Teaching is a noisy job.  It’s not just the clamour of corridors filled with voices and the clatter of many feet, it’s the conflicting demands of all sorts of activities and duties that create a kind of mental noise that won’t leave your head.  You always know there is something you have left undone.

It is so easy to lose sight of what matters.

Danielle was a frail, sad, quiet girl who had started off her education in the School for Delicate Children.  When I first met her, the phrase “Failure to thrive” jumped unbidden into my mind.  She just seemed somehow blighted.

It was hard to know how best to encourage her.  She hated any attention being drawn to her, and seldom answered in class, but she followed carefully whatever was going on.  She didn’t interact with the others, but she didn’t upset anybody either.  The group just accepted she preferred to keep her own counsel and in the end I simply fell in with that. With regard to written work, she jogged along in the slow lane, but she listened and thought about things.  I always felt she understood.

If anything, I saw her as a failure on my part.   She didn’t make dramatic progress, though she didn’t regress either. She was just a quiet presence on the edge of things.

It came as a complete surprise therefore to receive this hand written note from Danielle’s Mum when I was leaving.

“Dear Mrs Wise,  We will always be so grateful for what you have done with Danielle.  It has meant so much to her.  You cannot believe what a difference it has made.”

I was pulled up short by this.  I felt so ashamed.  What on earth had I ever done for Danielle in all the time I had taught her?

All I could think of was this – I had provided a small place in the confusing, noisy world of school where she felt safe and where her right to be quiet and thoughtful had been respected.

I had simply been kind and tried to do my best for her.

Danielle taught me what a privilege it is to be in a position to make a difference.

And she reminded me what really matters.