Reassurance.

Tags

#107days, #justiceforLB, #justiceforNico, #Mazars, preventable deaths, Sloven Health

News today that the Hampshire All Party Parliamentary Group is to ‘quiz’ Southern Health Chief Executive Katrina Percy.

The piece is not very clear on exactly what is expected to happen. Initially we are told that Ms Percy will be ‘scrutinised’, which sounds promising, and would be a novel experience for the Trust CEO, who is accustomed to being deferred to and lauded. But then it appears that Ms. Percy will be ‘addressing the meeting’, which sounds, depressingly, much more in keeping with her preferred style. On the other hand, local MP Suella Fernandes is expecting some ‘frank questions’ to be put. But there again, the said Member for Fareham is only wanting ‘reassurance’.

Ms. Fernandes, I can tell you now, you will get reassurance by the syrupy bucketload. Reassurance is a Sloven speciality, to be poured generously over concerns until they disappear under the sticky golden tide of sugary sweetness. And the recipe for this elixir of reassurance seems to be one part sparkly mendacity to two parts emollient obfuscation, spun into impenetrable thickness in an expensive PR machine.

The New Forest East MP, Julian Lewis, however, has shown himself in the past highly capable of subjecting Sloven spin to truly rigorous, data-based scrutiny (thank-you, @59kemppaul, for the heads-up). I hope Mr. Lewis is able to attend the meeting and give Ms Percy a thorough in-person grilling. Because while a few may be content to swallow syrup of reassurance, what everybody else wants is knowledge: knowledge that crunches like an crisp apple with the sharply acid taste of factual truth.

Running Scared.

Tags

#justiceforLB, #justiceforNico, #Mazars, (un)accountability, independent living, learning disability, Local Authorities, NHS, preventable deaths

Been missing my twitterpal Rosi Reed.  She has had to take time off socmed for health reasons, and I sometimes feel I should join her, in the interests of preserving my sanity.

As soon as Jeremy Hunt refused to promise that the Mazars report would come out before Parliament broke up for Christmas, I, along with the other #JusticeforLB’ers, knew we were in trouble.  The whole shebang was headed for the long grass and tumbleweed territory, and so it has proved.  Today, the 100th day after #Mazars was published, absolutely nothing positive has happened.

Southern Health NHSFT claim their ‘panel’ has reviewed 289 learning disability deaths, but there appear to be no reported outcomes from those reviews, and no information on their nature, scope, processes or findings.  Meanwhile, Sloven Board meetings continue to be opaque to the public, when they are not being downright disrespectful to individual members of the public who exercise their right to attend said meetings.  Katrina Percy and her merry band of nodding yespersons remain in situ, although a number of non-executive directors have jumped (or been pushed).  Among the remaining NEDS, one, Malcolm Berryman, appears to have been guilty of some seriously inappropriate talk over the family table in his moated mansion (and a catastrophic parenting fail in the teaching-courtesy department), since his teenage son popped up on twitter to call Connor Sparrowhawk’s mother a ‘fucking pest‘ for continuing to ask Mazars-related questions.  Needless to say, this indiscretion has not led to any consequences.  Now Sloven are quietly preparing to realise their assets in Oxfordshire through land sales, probably with a view to disinvesting in their unprofitable northern patch.

Although a few individual MPs have continued to ask questions, Parliament as a body has not followed up on the Mazars recommendations; nor, more pertinently, has the Secretary of State for Health, who appears to be evading every opportunity to take executive action.  As Rob Grieg said this morning on BBC Breakfast, it’s hard to avoid the conclusion that the Government does not consider the lives of learning-disabled people to be of any importance.

Since Christmas, I’ve also been grappling with ECHP* paperwork, as Grenouille’s SSEN** was due a major overhaul, which in turn means a switch to the new system.  All the usual, draining nonsense has ensued: lack of communication from the Local Authority; insufficient or inaccurate information in what communication there has been; blind following of ‘our processes’, in defiance of both the law and of simple commonsense, when the ‘processes’ manifestly don’t apply to G’s specific circumstances; layers of bureaucratic obfuscation; and a hefty helping of plain mulish obstinacy.  “Just go with it, and we’ll Tribunal ’em,” said G’s Papa, wearily.  I have persisted, because if we go down the Tribunal route (again), the chances of things being sorted before next academic year are hair-thin; but I resent doing, for free and at length, the admin that someone in County Hall is well paid ostensibly to be responsible for.

At the same time, Parliament has voted to cut Employment and Support Allowance – a benefit set at a level intended to sustain people for the medium to long term for people in the ‘Work Related Activity Group’,  to that of the short-term Job Seeker’s Allowance. This means a permanent 28.5% reduction to the income of anybody who, while unable to work now, might be able to do so at some future point, however distant (and it could be years… or never).

Personal Independence Payment criteria have been tightened to the point that some people are losing their Motability cars, their jobs, their homes and their independence.  In the Budget, the Chancellor proposed to cut PIP still further, to ‘save’ £1.2 billion a year, and only the Brexit-directed flouncings of the Secretary of State for Work and Pensions prevented the proposal becoming immediate reality.

 The Health Secretary, the smooth-spouting Jeremy Hunt, is locked in a patently stupid dispute with the junior doctors and his strategy for providing himself with a way out appears to be ‘keep kicking until I’ve made a big hole the NHS’.

Finally, the current Education Secretary, Nicky Morgan, has out-Goved her predecessor by announcing plans for the forced academisation of all State schools in England.  The ideologically-driven bonkersness and economic illiteracy of this notion is beautifully dissected in this blog; but the effects on Special Needs Education of effectively abolishing the bodies – the Local Education Authorities – charged with specifying and ensuring individual provision, adds a further layer of horror to the gruesome prospect.  Academy schools don’t ‘do’ SEN.  They are supposed to, but there are no meaningful sanctions for their failures or refusals.  When we were looking at secondary schools for Grenouille, the local Academy school was the only one at which we couldn’t get an appointment to view with the SENCO, despite repeated requests and despite the facts that it is (a) our nearest school and (b) the one that Eldest attends.

Yes, Local Authorities have to be watched like hawks over EHCPs, and it’s a pain and a headache to keep them up to the mark, but the marks are there, and so are the legal levers, and the links to local education establishments.  At the end of the day, it sort of works, after rather string-and-safety-pins fashion.  We certainly couldn’t ask for a better school for G than the one we ended up naming, but it’s hard to see how the school could have accommodated G, were it an Academy.

So what will there be for Grenouille, if all this goes through, after all my days and weeks and months and years of caring and researching and learning and writing and meeting and persisting?  No place in the academised, privatised school system (Special Needs provision is costly, not profitable), so unequal access to education?  A lifetime of pauper-level income and severely limited prospects for work, leisure and healthcare?  And a premature, care-less and ignored death?

I’m seriously frightened.

*Education, Health and Care Plan
**Statement of Special Educational Needs

Expected Unexpecteds.

Tags

#justiceforallthedudes, #justiceforLB, #justiceforNico, #Mazars, Sloven Health

At the time of writing, the Mazars report into the deaths of patients of Southern Health NHS Foundation Trust, although ready to go, is still unpublished. The BBC news stories on Wednesday 9 December were based on a copy of the final draft of the report, leaked to them by person or persons unknown to #JusticeforLB.  The House of Commons Urgent Question to the Secretary of State for Health, on Thursday 9 December, was based on the same unpublished final draft.

As a general rule, I find televised Parliamentary proceedings an irritating bore, epitomised by that baying bearpit of ritualised smuggery and yah-boo-sucks non-addressing of the issues, that is Prime Minister’s Questions.  The UQ was very different: sober, even appropriately sombre.

Heidi Alexander (Lab., Lewisham East, Shadow Health Secretary) was suitably urgent in putting the question: “To ask the Secretary of State for Health if he will make a statement on the report of the investigation into deaths at Southern Health NHS Foundation Trust. “

Health Secretary Jeremy Hunt (Con., South West Surrey) would, at length.  He is obviously a bright boy.  He realised long ago – as soon as Verita 1 came out in early 2014 – that any attempt to dig a bomb-proof shelter on this issue would simply end up with him in a massively embarrassing hole, and he promptly came out with his hands up.  He adopted the same approach for the UQ, displaying cast-iron courtesy and resisting the temptation to yield to snark, even when asked awkward questions several times over.  Indeed, his responses were so cordial as to take on a slightly surreal air, as Members on all sides of the House heard the Minister telling them that they were ‘absolutely right’ ‘quite right’ and ‘completely on the same page’.  There were, of course, several places where he failed to answer the question despite replying at some length.  He is, after all, a politician.  Although the Mazars report states clearly that Southern’s major problem was a dreadful lack of adequate Board-level leadership, Mr. Hunt diverted to issues around individual health professionals and whistleblowing.  He did at least have the decency to look faintly embarrassed by his own equivocations, and at other times a slight hoarseness in his voice betrayed either a consummate actor, or else genuine feeling behind his words.  Watching him through the dispassionate microscope of television, the latter seemed more probable.

Ms. Alexander and many of the other MPs present also did themselves credit.  They had grasped that the point of the report was not the number of unexpected deaths, but that the overwhelming majority of the unexpected deaths had not been investigated.  They asked pertinent questions about informatics, mortality statistics and the prospect of independent Medical Examiners.  They pressed the Minister on when the finalised report would be published and pushed for it to be while the House was still sitting.  Mr. Hunt said NHSE had promised ‘before Christmas’, but not ‘before the Christmas Recess’.  (The Justice Shed promptly debated when actual publication would be.  Consensus was definitely in favour of 24 December, but 4pm or 5pm?)  Nobody in the Chamber was questioning the general validity of the Mazars findings, but outside, things were otherwise.

Health Service Journal (which named Katrina Percy, Southern Health’s CEO, ‘NHS Chief Executive of the Year 2012’ at one of their glitzy, pricy awards dinners) followed the line of a part-disclosed Southern-Health-commissioned review-of-the-Mazars-review (do keep up at the back there!) in dissing the Mazars findings by trash-talking their methodology.  The review review, written by Mohammed Mohammed, Bradford University Professor of Healthcare Quality and Effectiveness, picked out two items from page 5 and page 26 of the Mazars report and focussed on these as though they were the main thrust of Mazars findings.

The other query that came up was on the definition of ‘unexpected’.  I had already heard my Dad’s voice in my mind’s ear, asking, ‘What is meant by unexpected?  What constitutes a sufficient investigation?”, so I paid attention to these questions.

NHSE’s Serious Incident Framework says an unexpected death is one ‘where natural causes are not suspected.’  Posting that definition online got a near-apoplectic response from a medical practitioner, who said the definition should be ‘where unnatural causes are suspected’.  Initially, it sounded reasonable, but I could feel a niggle.  What if there was no reason to expect a person to die, but equally nothing to instantly give rise to suspicion of unnatural death?  Would those deaths just go into a limbo? Could they be classified as ‘nothing obvious’?

The BMA guidance to doctors issuing a Medical Certificate of Cause of Death (MCCD) suggests that an ‘expected death’ is one where the person has a current illness or condition from which they have been unable to recover despite appropriate treatment.  Other deaths are called ‘sudden or unexpected’ and fall into two categories: those where there is prima facie (obvious) evidence of violence or other unnatural causes, and those where despite the death being sudden or unexpected, there is no such prima facie evidence of unnatural cause.  The BMA adds that doctors

“are advised to be cautious in making or attempting to make this distinction unless they are forensically trained and experienced in clinical forensic medicine. It is too easy to wrongly classify a sudden or unexpected death.”

In other words, where the death is sudden or unexpected, the decision about its ‘naturality’ is medico-legal and not purely medical.  The BMA says,

“English law, contrary to popular belief, does not, at present, place an obligation upon a doctor to report all sudden deaths to the Coroner. In practice, the wise practitioner will report a sudden death to the Coroner, normally through the agency of the local police… In all but very exceptional circumstances, even where there appear to be no suspicious circumstances, the doctor would be wise to notify the coroner.”

It appears that the principles around investigating deaths are of the precautionary variety – deaths are to be investigated, unless there is obvious good reason not to do so.  It’s a much lower bar than ‘investigate only if there are immediately obvious reasons to do so’.  It also means that it is reasonable to ‘expect’ some sudden or unexpected natural deaths to occur.  People do die suddenly, like the jogging guru Jim Fixx, who dropped dead at 52, but equally, they don’t die for no reason.  The causes of the death must be determined.  Mr. Fixx had a genetic predisposition to heart disease, possibly exacerbated by previous lifestyle factors.

Not until cause of death has been investigated, can the questions of preventability and accountability come into play.  And this is where Southern Health, despite their protestations, have failed.  They are not keen on accountability, particularly when it appears to be encroaching on the ivory towers of upper management.  In order to evade accountability for preventable deaths, they have avoided doing death investigations thoroughly, or at all.  They are complaining bitterly and loudly that people are conflating ‘unexpected’ deaths with ‘preventable’ deaths, that the Mazars report did not look at quality of patient care, and that it’s all so unfair.

It’s true that no-one can say that the uninvestigated deaths were all preventable.  Indeed, it’s certain that a proportion of them could not have been prevented by any efforts.  But there is equally no way of knowing whether that proportion was big or small, because Southern Health didn’t make any effort to find out.  They did not do the preliminary sifting to see what the causes of death were, or to see if those causes might be linked in any way to Southern Health’s care.  They are now pointing out the gaps in the data and saying ‘No evidence of wrongdoing’.  But an absence of evidence is not evidence of absence.  Other evidence – such as their eagerness to classify Connor’s death as ‘natural’, such as their treatment of the Reed family, and their attitude to the father of David West, suggest that some of the uninvestigated deaths might well have been preventable, and that a truly ‘learning organisation’ would have wanted to evaluate causes and circumstances of death, to see what could be done better in future.

We’ll never know.  Because Sloven couldn’t be bothered to look.

Less Than Human.

Tags

#justiceforLB, #justiceforNico, #Mazars

It was Grenouille’s school Christmas Concert yesterday.  Always an utterly fab event.  The school has a very strong music department and runs an orchestra and two choirs.  G, love and bless, can’t carry a tune in a bucket, or remember all the words of a song in the correct sequence, but has been an enthusiastic and assiduous member of the choir from the word go.  The wonderful music teacher has given nothing but encouragement and praise for every effort, and has done wonders for G’s confidence and willingness to join in.

Attending the concert this year was tricky.  G had a healthcare monitoring appointment after school, so the afternoon schedule went: leave school; be driven along 10 miles of Rural Road to meet me at Healthcare Facility; get through (longish) appointment; go home; have early dinner; be driven back along 10 miles of Rural Road to Concert Venue in Schooltown; and all in three and a half hours.

The early part ran smoothly, and just before 5 p.m. I was in the kitchen, boiling water for spaghetti to go with the bolognese sauce I’d made earlier.  As always when I am cooking, my Radio 4 reflex kicked in, and I switched on in time for the start of ‘PM’.  And promptly forgot about spaghetti, and concerts, and anything, really, except what I was hearing.

The story at the top of the hour was about a review of deaths in a large Mental Health Trust.  My ears pricked up instantly.  Ever since LB’s inquest, and the publication of the incomprehensibly mangled Verita 2 report (might as well have been printed in whitewash, instead of ink) #JusticeForLB has been waiting for a second report.  This further report, commissioned by NHS England and being produced by a firm called Mazars, looked into all deaths in Southern Health in the period April 2011 to March 2015.

I haven’t felt able to blog about the reviews/reports; it was just too depressing for words.  The Verita 2 report, commissioned and paid for by Southern Health, and published just after Connor’s inquest, showed every sign of having been subjected to extreme leaning-on by Sloven.  It set out a recognisable version of the facts, all pointing in one direction, then slewed round in its conclusion to come to findings that were at 90° to the whole line of the report up to that point.  Despite protests from the family’s advocate and the independent advocate on the report panel, Verita blandly refused to reconsider their findings and published the report as it stood.  Sloven gave it a smug welcome, but since the Inquest jury had already reached a verdict diametrically opposed to Verita’s, the report seemed a particularly ‘meh’ exercise of monumentally pointless hypocrisy.  It didn’t bode well, however, for how much notice Southern Health was likely to take of the Coroner’s Prevention of Future Deaths report, whenever that might be published.

The Mazars report, which had been ready at the same time as the Verita 2 report, dragged on.  Sloven were contesting the findings and asking for changes.  Lots of changes. About 300 of them, according to George Julian, the family advocate on both report panels.  Mazars rejected nearly all the proposed changes.  Southern Health started questioning the academic methodology of the report.  NHSE seemed to be cool with this.  The report publication date was put back, and put back.  George, who had postponed her holiday until after the expected publication date, went away worrying that it would come out while she was not there to support the family; but it was still unpublished when she returned.  Connor’s mother was becoming ill with the strain of waiting and not knowing what was happening.  NHSE called yet another discussion meeting for Friday 11 December.

But here we were, on Wednesday 9 December, and surely this report in the news had to be the Mazars report?  It was, and it was a shocker.  Out of 10,000+ deaths, there were 1,454 ‘unexpected deaths’ in Southern Health over the four-year period.  Of these, only 272 were investigated: 13% of all unexpected deaths, less than 1% of unexpected deaths of people with a learning disability and just 0.3% of unexpected deaths of people with a mental illness who were aged over 65.  How can Southern Health claim to have learned, I thought, when they haven’t studied?

I listened to the end of the piece, only semi-processing much of it; my mind was reeling. Then the pasta pan boiled over, with much steam and hissing, and I hastily returned my concentration to the evening’s preparations.

In the dark of the car an hour later, though, as my hands turned the steering wheel back and forth and my eyes checked the rises, dips, twists and turns of Rural Road, my mind went back over what I had heard.

“G, can you help me divide 1,454 by 4, please?”
“How?”
“Can you just hold 350 in your head, please?”
“OK”
“And add 10 to it?”
“360.”
“And add 3?”
“363.”

363.  Three hundred and sixty-three.  One a day, if you take a break on, say,  Christmas Day and Boxing Day.  There’s even a couple of spares left over for Leap Years, my inner cynic said, and I felt the saliva of disgust rise and flood my back teeth.  No wonder Southern Health were so swift to brush off Connor’s death; sudden or unexpected deaths are such a commonplace to them that they don’t even think about them unless forced to.  “There were no more unexpected deaths than were to be expected”, had said the Southern Health response, gnomically.

Concert Venue is a beautiful, old, mellow-stone building.  The atmosphere inside is equally mellow: warm and peaceful.  The concert was as wonderful as ever, but I couldn’t enjoy it.  I forced myself to concentrate on the pieces where G was taking part, drinking in the serious little face turned towards and wholly focussed on the conductor; but during the other items I remembered Connor’s mother mourning over his end of year assembly, and how Mark Neary can’t watch his son’s old school shows any more: not because Steven is gone, but because so many of his classmates are.  I thought of 1,453 other Southern Health families who, over the last four years, have suddenly found themselves in the parallel dimension of grief.  I felt like I needed to stay in touch with the Justice Shed.

So I did what I would have always sworn I would never, ever do in a concert or play: fished my phone out and scrolled through my twitter feed.  The horrified shock, sadness and hurt were palpable. Each tweet was like a blow to the chest.  Then there was a tweet from Nico Reed’s mother, Rosi, and it was as though my bruised heart broke:

” I cannot adequately put into words how I feel about that statement, ‘No more deaths than expected’. My son.”

The light on the stage blurred, shimmered, deformed.

How could, how COULD they?

Inhuman.

Rosi’s blog on the report and its aftermath, ‘The 1%’ is here

Lessons Learned.

Tags

#107days, #AdsThePoet, #IamThomas, #justiceforLB, #justiceforNico, autism, cerebral palsy, Down syndrome, institutions, mothers

Exam fever has descended on our house, for the second year in a row. Maybe I’m on the brink of senility, but I don’t remember exams being this big a deal when I was at school. You went to lessons, did your homework, did timed single questions every month or so, sat mocks in January, kept pegging away at practice papers, and then stocked up on hay fever preventatives and treatments before the real thing in June. And, of course, you got a year off from public examinations between your GCEs and your A Levels.

The consequence for schools of public examinations three years on the trot seems to be that there has been very little time in each year for consolidation of knowledge. Eldest has been galloping through the various AS syllabi right up to the end of this week, and now he goes on study leave. Er, what? In effect, by the time he gets to his A2s he will have lost half a term’s teaching from his A-Level courses, compared with the length of time his father and I each had.

Still, his GCSE’s have taught him how to revise methodically, and he has been busy since Christmas condensing his notes down on to file-cards – a different colour for each subject, with coloured spots on them to code for topics – and then expanding them up again. I don’t think I acquired that sort of skill until I was at University – and even then I only used it for subjects such as law or history, where facts trumped flair. For language and literature, I just seemed to absorb the books, and, faced with a choice of questions, never had much trouble finding something on which to hold forth in a manner pleasing to the examiners for the length of a forty-five- or sixty-minute essay.

One of my courses was twentieth-century French ‘literature of ideas’: mostly mid-twentieth-century existentialism. I adored the ambiguities of Camus; enjoyed, in an arms-length kind of way, the waspishness of Sartre (though I could have done without the stodgy density of L’Etre et le Néant); mulled over de Beauvoir alongside the shelf-full of 1970’s feminist texts that my Hall room-mate was only too delighted to lend to me; and laughed out loud at Roland Barthes’ nostalgically lyrical descriptions of wooden toys. A man who could seriously write, ‘le bois ne blesse pas’ (wood does not hurt), was a man who, in my opinion, stood in great need of the salutary experience of being on the receiving end of an alphabet brick flung with malice, force and accuracy by a younger sibling. Evidently Barthes’ brother was gentler than mine were, or perhaps, being junior by twelve years, young Michel had been too awed at the brick-flinging stage by the teenage Roland to subject him to these projectile assaults. But I appreciated M. Barthes’ description and dissection of the then-latest Citroen car, the DS – a bubble of glass and sleek enamel, floating on hydropneumatic self-levelling suspension, which was such an idol that its name was pronounced ‘déesse’, or ‘goddess’.

Unfortunately, it wasn’t enough to read the books; we had also to grapple with the philosophical concepts behind them: Camus’ Absurd; Sartre’s phenomenological ontology; de Beauvoir’s Other; Barthes’ semiology.

On the day of my Final in this particular subject, I had somehow managed to set my alarm-clock an hour early, and having risen, bathed and breakfasted before I discovered my mistake, I decided not to go back to bed – I didn’t fancy getting undressed and having a second bath before re-dressing – and instead did some last-minute cramming on Mythologies. I’d already memorised a number of quotations, but in his last piece of the book, a mid-length essay called ‘The Myth, Today’, Barthes helpfully provided a little table of levels and degrees of meaning, which I now copied out several times. Two hours later, in the exam hall, I was faced with a question on semiology that begged for a neatly plotted table to support my disquisition on the evolution of sound into symbol into mythic significance. I duly sketched it out, wrote my five hundred words, did the other questions required, went home and thought no more about it. Months later, my tutor pounced on me at the faculty post-graduation sherry reception and told me how the examiners had been particularly impressed by my grasp of semiology in my Barthes essay.

I didn’t tell her about my last-minute cramming, or that I could no longer remember anything much about semiology beyond the notion that ‘things can be more than they seem’ and the general outline (but not the content) of the ‘Myth Today’ table. University had also taught me the wisdom of accepting a compliment gracefully and of not digging unnecessary holes beneath my own feet. I smiled, and thanked her, and moved on. The lessons in social graces I had not only learned, but practised and internalised; the Barthes, alas, had been learned, but not remembered.

That, I think, is the problem with the ‘lessons learned’ from Winterbourne View, from Stafford, from twenty, thirty, forty years of horrified discovery. Each time, the lessons to be drawn have been so obvious that even the most wilfully ignorant could not dismiss them. Each time, the atrocities have been roundly denounced, the promises to learn sonorously delivered. Each time, it is claimed that the lessons have been learned; and each time it has become painfully evident that if they ever were learned, they have not been properly remembered.

Such lessons have to be learned collectively, at the organisational level, so that they become part of the organisation’s automatic reflexes. Otherwise, the learning dissipates, as individual staff-members leave the service and their replacements are not imbued with the same knowledge. In an organisation like a hospital, the loss of knowledge can be startlingly rapid. While a core of staff may be long-term employees, many health professionals need to keep moving on to new posts in order to foster their careers, while many non-medical staff may also be in short-term jobs. Staff turnover across the NHS has been calculated to be of the order of 25% per annum. That’s a very rapid attrition of any unembedded learning.

Services need to organise themselves so that they don’t just learn: they retain and transmit what they have learned, so that future versions of themselves know that people with epilepsy don’t get left alone in the bath; that people with very high care needs and a risk of aspiration are not, at their most vulnerable and precarious times, made to share the attention of a lone staff-member with three other similarly disabled people; that people whose mothers are worried about their significant chest infection need to see a doctor as soon as possible; that having a GCS of 3 just now doesn’t mean that you have never had, and never will have, a higher score.

Learning a lesson is useless if you don’t remember it.

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

Inquest for a Sunbeam.

Tags

#justiceforNico

Nico Reed’s inquest made it to the Oxford edition of BBC South Today last night. A piece-to-camera from the journalist briefly (and, if I have understood Rosi Reed aright, not wholly accurately) outlined Nico’s life and the circumstances of his death.  Then a few items picked from the day’s proceedings were mentioned as a voiceover to shots of participants arriving at court: Nico’s family, bundled up against the cold and walking quickly, and a group of people whom I presumed from the commentary to be some of the healthcare team, one lugging along a trolley stacked high with file-boxes.

According to the journalist, the care staff on duty on the morning Nico died testified yesterday that all his care had been given according to his plan.  Probably in one (or more) of the file-boxes there was a sheaf of paper documenting the care given, with all the boxes ticked.  But under that care, Nico went from being a person who lit up his surroundings and other people’s lives with his sunny personality and beaming smiles, to being someone who had lost his hard-fought-for communication skills and had become ‘thin, depressed and frightened by the care he received’.

And I thought, surely the point is not so much about whether the care was performed to plan, but that the plan specifying the care was hugely, horribly inadequate?

Pants.

Tags

#justiceforLB, #justiceforNico, appropriate vocabulary, institutions, Sloven Health

Grenouille was officially diagnosed at around 2 1/2 as having a severe language impairment.  From the outset, G’s receptive language has been way ahead of speech production. Listening to stories has always been a favourite activity, and G has a remarkably wide vocabulary, but still finds some talk dealing with abstract concepts baffling.  G prefers to focus on the concrete and the practical, and has no patience with the unnecessarily high-faluting, considering it a waste of time and breath.  An adult indulging in persiflage will be slapped with a stern, dark-blue stare from under drawn brows, and the flat question, “Wassat s’posed to mean?”  And after whatever-it-is has been conveyed to G in plain terms, the even sterner question follows: “Whyn’t you ‘splain it p’operly first time?”

 After a decade of intensive speech therapy, G’s utterances remain difficult for some people to follow until they become familiar with the idiosyncrasies of cadence and construction.  In spite – or perhaps because – of the difficulties that G has in producing long sentences, what comes out is often almost poetically economical and inventively fresh.

Today’s Monday-morning breakfast table was enlivened, after a half-term week of wearing comfy jammies and slouchy trackie bottoms, by G getting up and treating us to a hip-wiggling dance, accompanied by pulling and plucking at the school uniform’s sharply-tailored nether garments.

“What on earth is the matter, G?”

“Pulled my pants and trousers up too tight.  They’re gypping me with wedgies.”

Bless.

For some things, however, G prefers to use a brief, one-size-fits-all response.   To those who use their brains for context, as well as their ears for sound when listening, it means a lot more than the single word (or lone syllable) conveys in isolation.

For example… well, here’s an extract from Southern Health’s September 2014 minutes:

‘7.19 Simon Waugh observed that the Trust had previously reported good progress in relation to reducing out of area bed usage, and queried the reasons for the recent deterioration. Lesley Stevens, Director for Mental Health & Learning Disabilities, noted that this was a multi-faceted issue, but that there was significant focus on working through various solutions.’  (My italics).

I had been fizzing about the pointless platitudinousness of this and decided this afternoon to run it by G.  It took some explaining of the Chairman’s question: what ‘out-of-area beds’ were and why it was important to the Trust to keep the use of such beds as low as possible, but G understood that having to buy space in a place far away would be expensive (“like staying in a hotel when we go away on holiday?”) – a major concern for Sloven if paragraphs 7.21 and 7.22 are anything to go by – and could think of reasons why people would not want to be further from home than they had to (“like when I was in Admitting Hospital and Papa and E could only visit every other day because it was so far?”).

So then we tackled the Director’s response, and here we came utterly unstuck.  I could explain the meaning of each word so that G could understand it, but string them together and the overall meaning of the statement remained a big, fat zero.

“Wassat s’posed to mean?” said G, scowling.

“I’m not sure,” I said.  “What do you think it means?”

G frowned even more ferociously.  “Means nothing.”

“And what do you think of somebody giving a nothing answer to an important question?” I said, pretty sure of what the answer was going to be.

“Pants!”

Indeed, sweetheart.  The sort that gyp you with wedgies.

 

More Than One Life.

Tags

#justiceforLB, #justiceforNico, interdependence, preventable deaths

Another post that seems to have coalesced from wildly unrelated items – my father’s birthday last week; reading forwards from the old mydaftlife post that George Julian retweeted; Rose Tremain talking about her short story The American Lover.

This year marked the seventh time that my father’s birthday has come and we have been unable to celebrate it with him.  I still have – in my ‘bitties’ drawer – the now-yellowing card that, a few months before the date, had caught my eye as the perfect one for E and G to send to him seven birthdays ago.  It shows a gang of short-trousered schoolboys, probably his approximate contemporaries, playing cricket with an oversized bat improvised from a roughly carved plank, with another plank as wicket.  Quintessentially English, long on ingenuity, big on fun, short on material resources in childhood; it was my father to a T.  ‘It’s your birthday, Grandad’, says the inscription, jaunty as the lads’ smiles.  ‘Hope it’s a big hit, just like you!’  I don’t know what to do with the card.  E and G don’t have another Grandad to send it to, and I can’t bring myself to throw or give it away.  So it sits there, and every so often I catch sight of it and am reminded of a time when….

George reminded me of a different time when…, the time when the mydaftlife blog had the fun of LB’s contributions and Dr. Ryan’s street photography.  Following the ‘Previous’ and ‘Next’ buttons from the highlighted June 2013 post, I revisited cyclists, statues and coffee, cake, chat and choice scenarios.  After 15 months of relentless bureaucracy and grinding inhumanity, I had almost forgotten the happy breeziness of the blog, back in the day.

Rose Tremain’s inspiration for her story, she said, was, “How our lives turn on little pivotal moments, what Wordsworth called ‘spots of time'”.  Apparently, her protagonist, Beth, has a teenage affair with a much older man, which causes her life to veer off in a wildly unexpected direction, only to be upended again when the lover leaves.  She finds literary success when she fictionalises her experiences, but fame is not a pleasant experience for her and later, a car accident causes another abrupt twist in her path. “I’m very interested in the idea that from this one moment comes all this wounding” said the author.  The interviewer was more focussed on the idea that the piece was like a Russian doll – stories within stories, lives within lives.

The ‘little-pivots -> huge (potentially disastrous) step-change’ thing seems to me to be such a truism as to be teetering on the edge of cliché.  Little pivots like the moment in which some anonymous bod at STATT suggested that Connor’s tongue, bitten in an unnoticed seizure, needed Bonjela and closed the incident at that.  The split-second in which a clinician decided, exasperatedly, that my mother’s repeated reporting of, and queries about, my father’s symptoms, were not concern but obsession; and therefore (fallaciously) concluded that Dad didn’t actually have any significant symptoms and wasn’t really ill at all.

Of more interest to me is why, having made these apparently insignificant, on-the-fly choices, people seem trapped in their own commitment to them, even in the face of mounting evidence.  NHS staff refused to recognise evidence of Connor’s epileptic seizures, even after his mother explicitly drew attention to the signs. Clear pointers that there was something far wrong with my father’s health seem to have got lost somewhere between his oncologist and his infectious disease consultant.  Nico Reed’s therapies were not reinstituted despite his weight loss and mood changes.  Steven Neary was kept on an ATU in the face of his clear desire to go home. At the time of writing, Claire Dyer is sequestered in a psychiatric facility hundreds of miles from home, and is subject to a punitive behaviour-modification regime, even though she has autism, not a mental illness, and up until her transfer was safely spending extended periods of time out in her supportive local community. Why is it so hard to take a step to the side and say, “Actually, not sure that was quite right.  Let’s think again.”, instead of remaining with both feet planted in the chute that plummets, at an ever-steeper angle, towards the pit of disaster?

But the thing that really caught my attention was the image of the matryoshka doll: lives within lives, and, it occurred to me, at each step-change, the lives getting smaller, more restricted.

It is not just the life of the main protagonist that is reduced, confined to a progressively more closed and isolated space or even, finally, a coffin and a grave.  It’s not just Connor, Nico, Steven and Clare with doors slammed in their faces as they stood on what should have been the threshold of an expansion into young adulthood; not just my Dad, who could and should have been poddling happily and healthily through his eighth and ninth decades.  It’s the lives of the people around them.  It’s Dr. Ryan, in a life where she no longer has the time or the energy to focus her attention and her camera on tiny glimpses of other people’s lives.  It’s my mother, permanently cut off from the man whom she had, for over fifty years, loved without reservation.  It’s me, my siblings and our children, with the Dad/Grandad-shaped blank in our lives and the repercussions sending echoes of fear into our futures.  It’s Nico’s parents and sister, ground down to ‘the dust in the corner’.  It’s Mark Neary, living a life that consists almost entirely of care, work, care-work, care-paper-work, and inability to sleep.  It’s Claire Dyer’s whole family, grinding back and forth along the weekly narrowness and exhaustion of the Swansea-to-Brighton corridor, in hopes of maintaining some semblance of a relationship with her.

Multiple lives, and each of the multiple lives-within-lives a diminution; a deprivation of the bigger should-have-been lives.  The metaphysician of St. Paul’s is as right today as he was four hundred years ago.  What happens to an individual is not about just their one life.  It’s all our lives.

Sunshiny Day: Justice for Nico.

Tags

#justiceforNico, Commemoration, mothers, siblings

Rosi Reed has asked that on 22 August, the second anniversary of her son Nico’s death, friends ‘fill the world with sunflowers’ in memory of  Nico, and ‘all the happiness, love and laughter he brought into the world’.

If you have a twitter or Facebook account, please change your profile picture to a sunflower on Friday, ‘in memory of Nico and all the precious and loved young people who have died needless deaths, deaths by indifference, by neglect, by poor practice and by ignorance.’

Rosi has told me that Nico was ‘a total music-head’.   I don’t know what his preferred musical genres were, but  I hope his family will feel that the following are true to Nico’s sunny spirit, (even though I suspect he himself might well have considered them fatally old-school and uncool).  And I hope they like the sunflowers – and the sunflower-coloured uke.

 

I can see clearly now, the rain is gone,
I can see all obstacles in my way
Gone are the dark clouds that had me blind
It’s gonna be a bright, bright
Sunshiny day.
I think I can make it now, the pain is gone
All of the bad feelings have disappeared
Here is the rainbow I’ve been prayin’ for
It’s gonna be a bright, bright
Sunshiny day.
Look all around, there’s nothin’ but blue skies
Look straight ahead, nothin’ but blue skies….
I can see clearly now, the rain is gone,
I can see all obstacles in my way
Here is the rainbow I’ve been prayin’ for
It’s gonna be a bright, bright
Sunshiny day.

 

Bring me sunshine in your smile,
Bring me laughter all the while,
In this world where we live
there should be more happiness,
So much joy you can give
to each brand new bright tomorrow,
Make me happy through the years,
Never bring me any tears,
Let your arms be as warm as the sun from up above,
Bring me fun, bring me sunshine, bring me love.

Bring me sunshine in your eyes,
Bring me rainbows from blue skies,
Life’s too short to be spent
having anything but fun,
We can be so content
if we gather little sunbeams,
Be light-hearted all day long,
Keep me singing a happy song,
Let your arms be as warm as the sun from up above,
Bring me fun, bring me sunshine, bring me love.