How To Do Sorry.

Tags

#justiceforNico, institutions, no-fault-near-miss reporting systems, preventable deaths

I’ve brought my children up on the principle that if you’ve done wrong, being willing to say sorry is a good start, but only a start.

In our house, there are two more necessary components to an apology. You have to say sorry specifically for what you did wrong, and in a way that helps the person to whom you are apologising feel better. And then you have to do sorry: think about how to avoid upsetting that person – and other people – in the same way in future and work on that prevention.

 It doesn’t just apply to the children.  When we offend, we adults have to apologise too, sincerely and without reservations; and then we have to do better afterwards.

Grenouille understands this.  Not saying the execution is always perfect – who enjoys admitting they are wrong? – but the effort is there.  G knows that no-one, not even a parent, is beyond reproach; and that you don’t need to be clever to say and do sorry.  Even a child with learning disabilities can figure out ways to make things better after they’ve set them awry.

Not, it appears, at Southern Health.  This is the best they could do after Nico Reed’s inquest.  Nico’s mother has written an hilarious politely-sarcastic reply, behind which her disbelief, her forced-upon-her cynicism and her absolute outrage stand screaming.

If I had had a say the upbringing of the person who should have written that letter (and no, I’m not old enough to be her mother, but am of an age to have been her big sister) it would have read something like:

Dear Mr and Mrs Reed,

My name is … and I am….

I am writing on behalf of Southern Health Trust, with the knowledge and endorsement of the Trust Board, to apologise to you from the Trust as a whole, for our part in the death of your son Nico.

We are sorry that during our takeover of Ridgeway, we didn’t do the due diligence work that could and should have shown up the holes in Nico’s care. We are sorry that because we didn’t do this work, poor practice was allowed to continue.  One aspect of this poor practice was that there were too few staff on duty overnight for the needs of the residents, so Nico was not cared for according to his Plan and as a consequence he died when he might have been saved.  We are sorry that we misled you over the timing and nature of Nico’s death.  We are sorry that we refused to talk to you and tried to hide the causes of Nico’s death from you.  We are sorry for claiming that needs specified in a care plan were guidelines, not requirements.  We acknowledge that we were trying to wriggle out of the liability that was properly ours, and we are ashamed of and sorry for that.  We are sorry for being too cowardly to face up to our responsibilities and for hiding behind taxpayer-funded lawyers in our attempts to evade responsibility.  We are sorry for causing you over two years (and counting) of additional grief and stress by our evasions.  Above all, we are sorry for Nico’s unnecessary death and for our failure to spot, and insist on, the changes that could have prevented it.

We are now ensuring that all care plans are rigorously specified with information from families and previous carers as well as our own medical staff, by <process>, and we are making sure those plans are fully adhered to from residents’ first day with us.  We have put in extra staff to provide the hours needed for each resident to get all of the care specified in his or her Plan.  Our system for checking that care plans are followed consists of <…..>
We have reviewed how staff communicate with families in emergency situations. All staff are now trained by <this appropriate, named organisation> in emergency communication and will receive refresher training annually.  We have tightened up how documentation is done by <process> and we have also put <these contingency arrangements> for cover staffing in place so that if ever there is an emergency, the staff-members involved will be enabled to record events immediately and fully.
We have put in place an airline-style no-fault near-miss reporting system and policy.  While staff are not sanctioned for concerns or mistakes that they report, they are liable to severe sanctions, in accordance with Section N of the policy, for failing to report near-misses that subsequently come to light.  Friends and families of patients are able and encouraged to make reports through the near-miss system by <…..>   So far, the near-miss reporting system has drawn to our attention <these> issues, which we have addressed by <actions>
If we take over or set up any other long-term care facilities in future, we will ensure that we check them against these standards and we will have our systems installed at the first opportunity.

We know that none of this can bring Nico back.  We hope that what we have done begins to reassure you that we are trying our hardest to make sure that what happened to Nico never happens to anyone else on our watch.  If you think we should be doing something more, or something differently, please get in touch with <name of top relevant manager> via <choice of communication channels> to flag it up.  We promise we will investigate your concerns fully and include you in the process according to your wishes.

Please let us know if you would like to hear from us again.   For example, we could arrange to let you have an annual report each year on our residential homes, or we could do something else that you would prefer, to let you know how we are maintaining and improving on the systems we have outlined above.  
If there is anything else we can do, at any time, to reassure you that Nico is not forgotten, and neither are the lessons that we should have learned straight away, you only have to tell us.  
You can contact us via <these various channels> or by using the enclosed SAE, whichever suits you best. 

I feel that as Chief Executive of the Trust, responsible for the overall organisation of our services, I also owe you a personal apology.  I am sorry for not preventing,  within the organisation that I lead, the failings that contributed to your son’s death.  I apologise for not ensuring that, after Nico died, events were managed to cause you as little additional stress as possible.  I’m sorry.   

Yours sincerely

Katrina Percy

Chief Executive

An Outbreak of Sanity.

Tags

care in the community, Down syndrome, LB Bill

Good news from the north-west: the Calvert family have won their case to have family member Mike offered a home in his own community.

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Mike was born with Trisomy 21, and has led a full and productive life, working for 20 years in a local factory that produces labels and packaging.  A few years ago, he had to give up his job when he began to develop dementia and limitations on his mobility.  Michael is a gentle, kind and loving man, but at age 47, he now has high care needs, which his immediate family are having increasing difficulty with meeting in full.  Reluctantly, they have come to the decision that it is time to seek twenty-four-hour, paid-for, care for Mike.

Mike’s mother Marilyn and his younger sister Jennifer had found a ‘fantastic, ideal’ place for Mike in his hometown of Wigton, just around the corner from his friends and family, and everything looked to be falling nicely into place until the local commissioners for care refused to give approval for Mike to live in the Wigton home.  They suggested that a place in Workington (22 miles away) or Maryport (16 miles) might be suitable.

For anybody with dementia, being removed from the familiar is unhelpful and disorienting.  For Mike, who has lived all his life in Wigton, staying local was vital. The family decided they had to go public with the story, and were overwhelmed with support in Wigton.  Local news organisations picked up the story after Jennifer started an online petition in mid-December 2014.  Over 155,000 people (thank you each and every one) supported her call for Mike to be cared for near his friends and family.  “He needs us and we need him”, said Jennifer.

On 19 January, the commissioners met to reconsider their decision.  They concluded that Mike could go to the place that his family had found, one street over from his mother’s house.  The family have found campaigning for Mike’s future while still caring for him ‘exhausting’.  “This has been a hard fight and it’s taken a long time”, said Jennifer.  “I just want to say thank you, thank you to everyone – the support is what’s kept us going.  We still have to give Mike up and give him to other people, but at least we know we’re giving him to the right place for his future.”

That the Calverts have felt they needed to mobilise tens of thousands of supporters, simply in order for humane common-sense to prevail, is abominable.  It should be an obvious given that the wishes of people with disabilities and their needs come before marginal financial savings.  For the sake of families in situations similar to the Calverts’, the LBBill needs to become law as soon as possible, so that people with disabilities no longer have a fight on their hands in order to get the living arrangements that they (and their families) want and need.

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Watch news video

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The Internal Refugees.

Tags

assessment, ATU, autism, institutions, true stories

This time last year, 17-year-old Tianze Ni was living happily with his parents in Fife.  He has autism and learning disabilities and attended a special school.  Then he hit the teenage developmental/existential crisis that derails so many adolescents, and in the absence of any suitable placement, was escorted by police to Stratheden hospital in Fife and admitted on 28 April 2014, for what was supposed to be a one-night-only stay prior to a Tribunal hearing on the 29th.  He never returned home.  Stratheden was not suitable as a placement either; indeed, it transpired that nowhere in all Scotland was there an establishment that felt able to cater for Tianze’s needs.  The Scottish NHS made the decision that Tianze should be referred to an assessment and treatment unit in England.  After the Tribunal, Tianze was sent in May 2014 to an ATU in Middlesbrough for an assessment period that was to last at least six, but no more than 12 weeks.  He has been there ever since.

Over the summer, there was talk of finding a residential school for Tianze, but it hasn’t happened.  Part of the trouble seems to be that Tianze isn’t responding to treatment – quite the reverse.  He is endlessly miserable, begging to come home, composing a song about how much he misses his home and his family and singing it to his mother at every opportunity.  He expresses his frustration in destructiveness and doesn’t trust the staff; with good reason since he knows fine well that the people in charge tell lies, starting with the one about ‘only one night’ in Stratheden and going on with the ‘maximum 12 weeks in Middesbrough’.  Since he was sent to Middlesbrough, Tianze has been so unhappy and angry that he has begun to self-injure.  It seems impossible to find anywhere else to take him on while he is self-harming, but until he gets out of his present environment, he will almost certainly be unable to stop himself.  Classic ATU Catch-22.

So for 8 months, Tianze’s parents, Nina and Clinton, have been making a weekly 400-mile round trip, which takes 12-14 hours on public transport, in order to visit him for the permitted two hours.  Sometimes a visit has been curtailed or cancelled without warning for some deemed infraction on Tianze’s part of a hospital behaviour policy that he does not understand and has certainly never signed up to.  The Nis are worn out and their business is suffering.  Their petitions to various Scottish Health Ministers have got them nowhere.  They have had enough and have decided that they can no longer make these long trips.

They have not, however, abandoned Tianze.  Instead, they have abandoned their home of ten years and their adopted country of Scotland, upped sticks and left the Kingdom of Fife for the borough of Middlesbrough, so that they can be near their son.  If ever anybody has been forced by authority into becoming internally displaced persons, it is surely the Nis.

And if ever anybody wanted an exemplar of unconditional parental love, the Nis again provide it: they have given up all that they spent the last decade building, purely for love of their son and to try to do the best they can for him, in appallingly difficult circumstances.  They, and Tianze, deserve better than to be arbitrarily chased from pillar to post with no permanent home in prospect.  They shouldn’t be turned into refugees.

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The Illusion that is ‘Choice’.

Tags

independent living, LB Bill

Need to get a new winter coat.   After many years of service, my gorgeous, warm, swishy black cashmere, is still warm and swishy, but is only gorgeous to the eyes of the heart and of memory: viewed objectively in the (very) cold light of day, it’s well past shabby.  The nap has worn off the front placket and the French seaming, the lining has torn and dips below the outer hem, the underarm stitching has come apart.  The pockets have holes and the top button has gone walkabout and doesn’t look like returning.  I know exactly the style I want to replace it – a semi-cape – and I’ve found a beautifully-cut and trimmed coat in that style and in my price-range.  However (there’s always a ‘but’, isn’t there?) it only comes in grey or a peculiar mustardy brown.  Neither of these are  colours that suit me.  That, in a nutshell, is the illusion of choice: that choice will get you what you need, when you need it, in the form that you need it.

So I have a decision to make: am I going to settle for a choice, or am I going to keep on looking for what I really want, even as the snow falls past my window?

I see further problems with ‘choice’.  Choice is passive and one-off – one is offered choices and has only to select from amongst them.  Decision, by contrast, is active and iterative – one has to research options, decide what factors are relevant and what weight they should be given.  It is – or has potential to be – an in-depth process, while choice is unavoidably superficial.

Somebody who is, for example, in need of care may not ‘choose’ to use a residential facility, but they may decide that in their particular circumstances – for example their carer being too ill with a bad bout of ‘flu to be able to provide the care needed – that it is appropriate to arrange (or at any rate, acquiesce to) it.

One reason I prefer to frame option-selection as ‘deciding’, is that ‘choice’ sounds somehow more irrevocable.  Decisions can be revised.  Choices, once made, have an aura of having to be stuck to – ‘Yer pays yer money and yer takes yer choice’.

But someone who has decided to use residential care at a given point, is still able to decide, later on – maybe when their carer has recovered their health – that they would like to do things differently now; return to how things were before, or request additional support at home.  They can do what they did before: make a decision appropriate to the current circumstances.  People tend to invest personally in decisions, but not in choices.  I could choose that dreary grey coat, or the peculiar brown one, but I wouldn’t like either of them.

I suspect this is why government bodies are so keen on ‘choice agendas’.  They give the illusion of autonomy being conferred upon the choosers, whilst actually forcing pre-chosen cards into their hands, Derren Brown-style: smoke, mirrors and illusion.  So I am supporting the LB Bill, which is offering people with disabilities the right to decide for themselves, with impartial, non-directive support if needed, where and how they will live, instead of having to pick from a limited menu of ‘choices’.

And the coat?  Well, I could choose the grey, which will wash all the colour out of me.  Don’t think it is fair on the good folk of N— for a figure like a corpse in a grubby winding-sheet to be seen stalking amongst them.  The brown is fresh-cow-pat colour.  No way.  So I’ve decided that anyone who hoves within visual range of me will just have to put up with the tatters of the black cashmere.  It’s in everyone’s best interests.