Common Trials: The Coordination Conundrum.

Tags

institutions, learning disability, medication, mothers, NHS

I’ve just spent 2 hours making phone calls to a dozen different people, trying to make sure that G will be safe during an upcoming hospital admission.  My phone line must be white-hot by now and it’s a good thing we have hard floors, or I’d have worn the carpet down to the canvas, pacing back and forth.  I have to stand and pace when I’m making this sort of phone-call; I need to keep my energy levels high in the face of incomprehension, it’s-not-my-job, and we-don’t-do-that.  Because I understand all too well what may happen – and what is likely to happen – if I don’t persuade people to see things from “just Mum’s” viewpoint, it becomes my job, and I have to do that.  All the while, there is a constant worry at the back of my mind, that if I rub someone up the wrong way, I may end up tarred with the ‘inappropriate involvement’ brush from paintpots like this recent case (where censure was warranted) and #LBInquest (12.14 onwards) (where it most definitely was not).

It is, as they say on Facebook, complicated.  Specialisation applies to administrative as well as clinical staff.  The admissions team schedules theatre slots, but you have to speak to the ward about bed spaces and to the departmental teams about staff complement.  The procedure that G is about to have is normally ‘day case’, but G’s complex interlocking medical conditions mean a three-day stay for pre-op stabilisation and post-op observation.  In turn, that means that the surgical team need to co-ordinate with respiratory and gastro, that an HDU bed must be booked, that the anaesthetics team need to be reminded that they have been warned of the extra wrinkles.

It’s very obvious from the letter advising me of the provisional admission date, that none of this has got through to the admissions team.  It’s a standard day-case admission letter, and if I felt inclined thus to waste my time, I could go through it furiously underlining every other word and muttering, “Wrong,” “Nope,” “Ain’t happening,” “In your dreams and my nightmares, sunshine”.

Instead, I burn through my phone bill, a deliberate smile on my face to help me pour bouncy-walk-induced positive energy down the line, talking to clerks, secretaries, nurses and answerphones, to get the whole thing orchestrated.  Each time, I repeat all the name, rank and serial number information with enthusiasm, as if I couldn’t possibly think of anything else I’d prefer to do on a summer morning.  I sympathise with technology glitches, make jokes, throw in a compliment here and fulsome thanks there.  I note numbers, names, who has agreed to do what.

Now, I have to wait and see (and maybe make a few follow-up phone calls in a week or 10 days).  I did all this four months ago, only for the procedure to be cancelled at the last minute.  It was scheduled for February half term and too many staff were away, taking winter holidays with their kids.  Of course staff need a work-life balance, their children deserve holidays, and I hope every last one of them had a thoroughly enjoyable time.

It’s just …. well, some of us get to go ski-ing.  And some of us feel we are permanently skating on thin ice.

Chains of Love.

Tags

#justiceforallthedudes, #justiceforLB, Connor Sparrowhawk, learning disability, Local Authorities, NHS

More satisfactory news for #JusticeforLB recently.  The Slade House site, which Southern Health had been intending to retain in its property portfolio, with a view to selling it off and keeping the profit, is being returned, lock, stock and barrel, to Oxford Health. Thank the entity – or epithet – of your choice for that.

Keeping Slade House for Oxford wasn’t part of the original Connor Manifesto, but as Southern decided – or were pushed – to cut and run from providing services in Oxfordshire, the fate of the site grew in importance.  Sloven, although demitting from healthcare in Oxfordshire, still intended to hold on to all the Oxonian physical assets that had transferred to them at the start of the contract.  But this time, it wasn’t only #JusticeforLB howling, “You have got to be kidding me!”  Oxfordshire residents and local politicians were equally outraged. Under no circumstances could it be morally or ethically acceptable that Sloven would get away with (1) taking over a faltering service, (2) running it down further until it killed a patient, (3) using that failure as a pretext for ceasing to provide services, but (4) still keeping hold of the assets needed for alternative service provision.  Yet the drafting of the contract with Sloven had been so sloppy that, in strict legal terms, Sloven’s retention of the real estate was a distinctly plausible outcome. The Justice Shed began contingency planning for protests, should it ever look like happening.

Under pressure from patients, from local residents, from the press and from politicians, Southern Health eventually conceded that, in the circumstances, insistence on pocketing all the windfall gains from a patient’s death wasn’t tenable.  Nevertheless, the wholesale return of the Slade House site was still by no means a certainty.  As recently as April, Southern were still haggling to put conditions on the return of the site, so that they could take a cut of any profitability, were the site to be decommissioned subsequently.  Continued intervention, not least from outgoing MP Andrew Smith, finally got the matter resolved in Oxford’s favour.

‘Just glad I don’t have to chain myself to the fence‘, wrote Connor’s mother.

I know she would not have been alone there.  Whether #JusticeforLBers would have been able to encircle the whole site, Greenham-Common-Style, I’m not sure, (while smaller than the Common, it’s still a fair old skelp of ground) but I know we’d have had a good crack at it.  In any case, it seems there were enough people who cared sufficiently about LB, to form a virtual chain around the site and protect it.  A chain of love, if you like.

The question now, of course, is what should be done with it from here on?  On Horspath Driftway, at the southern end of the Slade House site, there is – or was when the Google  Earth images were taken – a sign saying ‘Oxford Health and Wellbeing Centre’.  If only, eh?  But it might be a good place to start.  The Connor Manifesto says that for all dudes – Oxford-based or not – there should be:

• An effective demonstration by the NHS to making provision for learning disabled people a complete and integral part of the health and care services provided, rather than add-on, ad hoc and (easily ignored) specialist provision
• Proper informed debate about the status of learning disabled adults as full citizens in the UK, involving and led by learning disabled people and their families, and what this means in terms of service provision in the widest sense and the visibility of this group as part of ‘mainstream’ society.

Back when LB was in the Unit, the struggles, headaches and sheer bloody terror of ‘transition to adult services’ was something I understood only with my head; not, as now, with my churning gut.  G was pre-adolescent, still very definitely a child, rather than a ‘young person’; the transition of the time was the move from primary to secondary school.  But as Pagnol says, “Le temps passe, et il fait tourner la roue de la vie comme l’eau celle des moulins”*.  It’s not just E who has grown and changed: G is at the threshold of ‘transition’ and we have been introduced to a new actor in the production of ‘The Life of G’: the 14-25 Officer.

I have to say, I do not know what this person is for.  Allegedly, he is there to smooth G’s path through ‘Preparing for Key Transitions’ and ‘Preparing for Adulthood’, but so far has contributed nothing: merely collated the documentation of a few things that were already being done elsewhere (and better) by other people.  I’ve asked, repeatedly, for an outline of post-16 options, and been told it’s up to me to scope all that stuff out.  So what’s the point of this officer?  He seems neither use nor ornament.

Equally, I am having trouble with the NHS.  I’m told that as G is not in a special school, paediatric services will cease at age 16.  Never mind that the blasted EHCP – including the H-for-Health component – runs on to 19 or even 25.  Never mind that said EHCP is novella-length, or that G sees so many different health professionals that we need a lever arch file with about two dozen dividers in it to keep track of all the appointments.  Never mind that the twice-yearly consultations with the developmental paediatrician are the only place where I can feel that here is another person, besides myself, who has an overall – if not finely detailed – view of all G’s health needs and direct lines into the secondary-sector specialists that G needs.  Nope.  Immediately G reaches blow-out-16-candles day, all this will fall to the GP (lovely person, but 10-minute appointments can’t substitute for the hour and a half or so that the paediatric reviews get) and the Learning Disability Community Nursing team.

That’s another thing.  Learning Disability ‘medicine’ is embedded firmly in mental health services.  You can’t get a consultant in Learning Disability as such, only a psychiatrist.  Children’s learning disability services are part of CAMHS and they don’t seem to deal with learning disability unless the child also has autism and/or behavioural problems.

And there’s the rub.  G isn’t autistic and doesn’t – at present, at any rate – have any mental health problems.  G is learning-disabled.  G has normal teenage anxieties about fitting in and being part of the group and what-will-I-be-when-I’m-grown-up.  Any additional difficulties with that are not due to mental illness, but to developmental delay that means G isn’t as proficient as the typical teenager at processing those anxieties (and goodness knows, it’s not easy even for the most ordinary and laid-back teenager).  All G needs to stay on top of things is extra time: more time to think about stuff, more time to get responses out, a bit longer to ease into being an adult.

It’s always been the same.  I can remember various, ahem, discussions with various professionals during G’s infancy, during which I was criticised for, allegedly, seeking my own gratification by keeping G over-dependent on me.  Not pushing hard enough for whatever the flavour-of-the-month goal was: weaning; walking independently; having support withdrawn at nursery; and similar things that G wasn’t yet ready for.
My conversation-stopper was, “You do know that G’s genetic condition causes developmental delay, don’t you?  What do you think that means in real life?”
“Erm, well, G’s development is, um, delayed?”
“Obviously.  AND?”
“Er, not quite sure what you are getting at….”
“It means <pause while I mentally insert, ‘you nincompoop’>, G needs to be a baby for a bit longer.”
And of course, when G was good and ready, all those things happened: but on G’s schedule, not anyone else’s.   I just wish there were somebody now willing to work with, rather than on, G.

I hear that since Cheshire West got a pasting in their DoLS case over P, an adult with Trisomy 21, the West Cheshire health bods have appointed a specialist health facilitator for learning disability.  This person will tap into mental health services if they are truly needed, but is primarily concerned with the overall health care of learning-disabled young people and adults: building a person-specific system, based on the presumption-of-capacity provisions of the Mental Capacity Act, to ensure that during ‘transition’, each learning-disabled person’s health-care and communication support needs are fully documented; that they are plugged in to appropriate health support systems; and that if they have to go into hospital at any time, full and accurate information goes with them, to prevent them being put at risk by ignorance.  If only there had been something of the sort for LB, so that the staff would have had his epilepsy, and What Not To Do, set out for them in unmistakable terms.

Apparently, the West Cheshire person holds the only such rôle in the country, so I presume that elsewhere, dudes with physical health problems are potentially still as much at risk as LB was.  But maybe the Slade House site could be repurposed – whether by reuse or by sale –  to provide a permanent Connor Sparrowhawk Learning Disability Health Facilitation Service in Oxfordshire.  And maybe it could, by example, spread learning disability good practice to every Health Trust.

I don’t know if Connor’s family would see that as a worthwhile memorial to their Laughing Boy.  I just have a picture in my head of the love that they have for him, forming the first link in a chain that would wind on endlessly, through other loving families and dudes, into the future.

 

Here Come The Girls.

Tags

#justiceforallthedudes, care in the community, independent living, institutions, kindness, Local Authorities, NHS

Six weeks ago, I was wondering, “where are the girls?”.  A couple have emerged onto social media since.  Although neither is in exactly the same situation as the lads who featured in The ATU Scandal #7DaysofAction, I am noticing same old themes of waiting until a situation turns into a crisis, counterproductive provision, failures to keep safe, the dangers and indifference of total institutions, isolation, the powerlessness of loving families, the difficulties of leaving an ATU, financial skewing that makes it advantageous for mental-health provision to hang on to people and disincentivises Local Authorities from bringing them home, and terrible, all-pervading, stress and fear for inmates and families alike.

Sophie doesn’t have a learning disability, as far as I am aware, but she does have bipolar disorder.  She is currently in St. Andrew’s hospital in Northampton.  This hospital, a very large one headquartered on the old Northampton ‘lunatic asylum‘ site, is not actually part of the NHS; it is a private institution with charitable status that bids for NHS contracts.  Sophie’s family, who live in Middlesex, have concluded that the hospital is not suitable for Sophie.  According to the petition for her transfer, it’s making her life and her family’s life hell.  The family have tried everything they can think of to get her home, but “nothing works”.  Her family believe she is treated badly where she is and is not kept safe.  Sophie has managed to self harm on many occasions, sometimes very seriously.  Her family are ‘desperate’ to have her closer to home so that they can support her.  They say: “Sophie is 21, she is a beautiful, caring, lovely young lady who just wants to be with her family.  She suffers with bipolar but she is not a criminal, so she should not be locked away like a prisoner.  To be honest, prisoners have a better quality of life than Sophie does in St. Andrew’s.  She doesn’t receive basic human rights and is not kept safe.  We need her closer to her loving family.”

The second young lady is not in an ATU – yet.  Her name is Emily, she is 19 and profoundly disabled by her autism and learning disabilities.  She needs 24-hour, 3:1 care.  For the last few years, she has been living in a residential school with visits to her parents’ home in Shropshire, but in less than three weeks, when term ends, she will have aged out of the school system.  So far, she doesn’t have anyplace else to live either, despite her family’s long-running and increasingly frantic efforts to find her a home of her own with proper supports.

They have been through all the hoopla of trying to secure her a liveable income (which was initially denied) and a house.  They have been asking their Local Authority and Social Work departments for help and support, which has been in very short supply and seems mostly to have consisted of ‘signposting’ to providers.  Wrong boxes were ticked by official form-fillers, meaning that Emily has missed out on some potentially suitable houses.  Those which were offered are all unsuitable for one reason or another – too far from family, too small, too insecure.  The only currently empty property which, according to Emily’s swathe of professional therapeutic and medical reports, is suitable, is said to be in leasehold limbo between the Council and the Housing Association.  Apparently, it will not be made available to Emily anyway, because it is earmarked for adults returning from ATUs.  But if Emily doesn’t have somewhere of her own to live in two-and-a-half weeks’ time, she will end up in an ATU.  Her family have been told that, absent a home of her own, there will be no other options.

Let’s just think about that for a minute.  Emily’s education, health and social care professionals have known for nearly two decades that Emily will always need care and support.  Her 18th and 19th birthdays can have come as a surprise to no-one.  Yet there has been no forward planning for the end of her schooldays.  Unless someone does something very soon, Emily will be placed in a facility intended for (a) assessments (which have already been done – exhaustively), and (b) treatment (which she doesn’t need and which can’t help her since she has autism, not a mental illness).  She will be in uncongenial surroundings that will be very likely to exacerbate her difficulties with making sense of the world, and she probably will be subject to the forensic, carrot-and-stick, behaviour-modification-restraint-and-heavy-medication regimes that have left too many dudes in a terrible state; and the prospects of which have Emily’s mother in agonies of terrified apprehension.

Yesterday, whilst her father was travelling to visit yet another far-flung shoebox property remote from Emily’s family and home town, the car encountered a pothole that has left it inoperable due to suspension problems.  It’s not the only thing that is breaking down.  If Emily ends up in psychiatric care, I fear her Mum may just be driven to join her, as the strain is very obviously getting to within a whisker of being too much for her.

*****

*****

I.Can’t.Even.

Tags

#justiceforLB, (un)accountability, Connor Sparrowhawk, institutions, learning disability, NHS, preventable deaths, Sloven Health

This latest #JusticeforLB development is almost beyond comment.  It does, however, throw into sharp relief the siege mentality obviously operating within Southern Health; and speaks volumes about Sloven culture and the messages purposefully circulated within, and outwith, the organisation.

The transcript below comes from a message left on LB’s mother’s office answerphone from someone claiming to work for Sloven.  It doesn’t much matter whether the caller is a member of management, a lower-ranking staff-member, or just an unconnected crank; she has obviously absorbed and internalised an execrable attitude to LB and to his mother, and feels justified in spewing it out.  A toxic attitude that aligns precisely with Sloven’s dealings with LB and his family, all through the more-than-three-years since LB was admitted to STATT.

And Sloven’s response?  Of a piece with their previous form, and with the call.

Sloven are not setting up an enquiry, actively seeking the culprit and requiring staff to disclose information.  They’re not even setting up an internal enquiry and asking for all available information.  Oh no.  They will, apparently, set up a ‘full internal investigation’, if and when they receive ‘any information’ in response to their ‘urging’.

Pathetic.  As always.

 – – – – –

Good morning, hello. Hi, I believe this is a message for Dr. Sara Ryan, um, I’ve been seeing on the media about your son, your poor son that died under the care of Southern Health.  I work for Southern Health and I’m, it, it’s awful that you’ve lost him, I’m so sorry that you have done, um, ’s tragic, and … I hope you find some closure after the report, the, um, issue of the GMB … CQC report today, but I do think you are being reall- very vindictive.  I think you are a vindictive cow.  On TV all the time, ummm, slating the NHS Southern Health.  With your intelligence background, you know, as much as anybody else knows, that Southern Health only took over those units in Oxfordshire recentl-, you know, the recent months before your son died.  You know, with your background, it takes a while to make changes in anywhere, and I think now you’ve just become a bitch and you want some attention, but you are vindictive, you are unpleasant, and you are a nasty cow.

This message was recorded at 9.33am on Friday April 29th.  To save this message press 1.  <beep> To-  Message saved.

– – – – –

Health and Capacity.

Tags

#7DaysofAction, #justiceforallthedudes, assessment, autism, care in the community, learning disability, Local Authorities, NHS

So I was doing some background reading for a piece I was writing for #7DaysofAction and it involved trying to get a good grasp on the Mental Health Act 1983 (as amended by MHA 2007) and the Mental Capacity Act 2005 as they apply to ATUs and other NHS provision, in order to understand how what has happened to so many autistic young people came to happen.

For a non-lawyer, it was a bit of a brain-melt.

The Mental Capacity Act is intended to protect people who lack capacity to make their own decisions.  If there is a reason to suppose that a person is incapable of making a particular decision because of a cognitive impairment, then someone else can be designated to make that decision in the person’s best interests.  The decision-maker has to take into account the person’s preferences and ensure that in each case, the decision made is the ‘least restrictive option’.  When it comes to decisions around where a person should live, there’s a whole extra layer of protection – the ‘Deprivation of Liberty Safeguards‘ or DoLS – intended to make sure if a person is in hospital or a care home, that person lives in the least restrictive environment that can meet their needs.  The Safeguards require the professionals making the decision to show that the proposed restrictions on the person’s liberty are in his or her best interests, and to arrange for the person to have independent support (an Independent Mental Capacity Advocate, or IMCA) to help evaluate and challenge the restrictions.

So far, so good; but the DoLS require the organisation which is applying for a DoLS authorisation to restrict someone’s liberty, to certify that the person ‘has a mental disorder’; and to consider whether they should instead be considered for detention under the Mental Health Act.  The MHA is much more wide-ranging than the MCA; while the MCA is exclusively concerned with capacity, the MHA provides for a plethora of situations in which people may need to be compulsorily treated for a mental illness, including where they are a danger to themselves or others, and where they have committed or are accused of a crime.  Although the statutory guidance under the Act – the Mental Health Code of Practice – says that the person receiving treatment should be involved in its planning, that his or her wishes should be taken into account, that family and/or carers should be involved unless the patient asks for them not to be, and that treatment should be given the least restrictive way possible, this sits uneasily with the forensic, criminal-justice parts of the Act.  Patients are also supposed to have support from an Independent Mental Health Advocate (IMHA) to enable them to understand their rights and  to support any appeal to Mental Health Tribunal against continued detention.  Yet even when the person is detained under civil provisions, the treatment regime for patients with learning disabilities seems to have a strong forensic flavour, along the lines of: demand complete compliance with a regime of generic treatment and prescribed behaviours, unmoderated by any reference to the person’s particular condition(s) and needs; and apply restrictions and sanctions for any failure to comply.  Look at what is happening, today, to Eden and Jack.

The Mental Health Code of Practice was extensively revised in 2015, in the last few months of the Coalition government.  It now contains a whole, separate chapter on learning-disabled and autistic people and the relevance of the Mental Health Act to their care.  It is explicit that inpatient services are not relevant to people with autism or learning disabilities who are not mentally ill; that long-term residence in NHS care is not appropriate.  It contains the phrase, ‘hospitals are not homes’ and is clear that behaviour is communication and that ‘challenge’ is often incorrectly construed as the person being challenging, when it is actually the environment that is challenging the person.  The 2015 Code says that the Mental Capacity Act should be considered and applied along with the MHA; no more MHA automatically trumping MCA.  Read it for yourself.  Chapter 20.

‘Treatment’ is often not appropriate or even applicable: what people need when they are finding the everyday world difficult to navigate, is support.  And a person doesn’t need to be in hospital to get support.  In most cases it can be perfectly well provided in their own home.

A year on, the recommendations of the Code of Practice are taking far too long to trickle down into practice, which is why I am delighted to see that five families are collectively challenging the lawfulness of their autistic and/or learning-disabled family member being detained under the Mental Health Act when it is not (or is no longer) true that:

(a) he is suffering from mental disorder of a nature or degree which makes it appropriate for him to receive medical treatment in a hospital; and
…
(c) it is necessary for the health or safety of the patient or for the protection of other persons that he should receive such treatment and it cannot be provided unless he is detained under this section.

I wish the dudes and their families all the best and have everything crossed for a definitive win, because at the moment, MHA culture seems to be eating policy and strategy for breakfast, elevenses, lunch, afternoon tea, dinner and supper.  Here’s hoping the law will prove a lot chewier.

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

The Wood And The Trees.

Tags

#justiceforallthedudes, #Mazars, NHS, Sloven Health

---

---

I still haven’t got my head around the Mazars review. Partly because it takes even me some time to read 254 pages of dense text packed with excruciatingly painful stories behind each digit in the statistical content, but mostly because – as NHSE and Sloven no doubt calculated, by releasing it at the very last gasp before Parliament rose for Christmas – most people, including me, have had one or two other things to occupy our minds for the last 10 days or so.

Because the report wasn’t available in its final form until after the House of Commons had closed for the holidays, it has gone into limbo until Tuesday 5 January 2016 at the earliest.  I hope it gets picked up and thoroughly aired as soon as possible thereafter, floods notwithstanding.  Meantime, there are a quite few things from the Urgent Question on the leaked report that I have filed for future reference and review. In no particular order:

• ‘Parity of esteem’ there is not, even within lowly mental health services: 30% of working-age adult deaths were investigated, but only 1% Learning Disability deaths, and an even smaller proportion of deaths among people above retirement age.
• There needs to be a focus on Southern Health’s particular failings but, as noted by the MP for Stafford, the findings have implications for the wider Health Service in relation to mental health and learning disability services.
• The lack of family involvement was shocking.  The full report cites families who were not merely ‘not involved’ but were actively excluded from investigations.  I suspect that this is a function of power and control.  The patients were not seen as real people with a context, but as mere ‘cases’, so their families could be readily dismissed; and this view also played to Southern Health’s narrative whereby the service was the sole repository of knowledge about the person and their condition, the sole possessor of wisdom as to how to manage them, and the sole wielder of the power to treat and cure.
• A Public Enquiry along the lines of the Francis enquiry is warranted, although “Fast action to change culture now” is also needed.  The conclusions of the Francis enquiry, if implemented immediately at Southern Health, could do no harm and could potentially do much good.
• The scrutiny of Southern Health needs to be ‘intense & ongoing’.
• The Secretary of State placed an inappropriate emphasis on clinicians as the main actors in the present state of things at Southern.  At the root of problems at Southern Health was a massive, protracted and embedded failure to manage.  Facilitating whistleblowing by individuals is only a partial solution of the problem.  It can make no difference until senior management & Boards are held to account for their response to problems.
• That the problem with inquests whereby interested public bodies are entitled to unlimited state funding, but the dead person’s relatives have personally to fund their relative’s representation, has been noted, with 2 MPs asking about it. The Secretary of State replied as though the crowdfunding was a matter of relatives’ choice or was to fund civil litigation for pecuniary compensation, but of course this was not true.  Inquests are not non-adversarial proceedings in practice, whatever they may be in theory, and the question of funding for families at inquests should be put to the Secretary of State for Justice, Michael Gove.  In turn, the unfair and invidious position of families at inquests raises wider questions about legal aid and access to justice.
• A system of independent medical examiners could do much to assist with transparency and openness.  Oddly enough, the creator of probably the best-known fictional Medical Examiner, the author Patricia Cornwell, was on the radio in the week before Christmas, talking about how her Kay Scarpetta character, like the real ME who inspired her creation, views the bodies she examines as patients: real people who are just as entitled to proper care postmortem as they should have been in life.
• That there are questions to be asked of organisations beyond Southern Health about people’s care as patients, but also questions to be asked beyond the NHS about how to support people with mental ill-health or with learning disabilities to make a life.  Alongside the Health Secretary and the Justice Secretary, the Secretary of State for Work and Pensions also needs to be put firmly on the spot, over the closure of the Independent Living Fund, the reduction of Employment and Support Allowance paid to people in the ‘Work Related Activity Group’ (that is, people who are unwell or disabled but have the potential to move towards work, with proper support), the reduction of support to Local Authorities which in turn has meant the cutting of social care budgets, and the forthcoming transfer of Attendance Allowance to local authorities, which is likely further to reduce the support available to older people.

A dense and extensive forest of thorny problems, and just to add to the thickets of unpleasant underbrush, there is the matter of Winterbourne View and the Joint Improvement Programme, which seems to have died  the death with no results.  The number of people spending long periods of time in supposedly short-term Assessment and Treatment Units has reduced only marginally; around half of the current inmates are people who were also incarcerated a year ago.  The biggest difference is that the average distance between home and place of stay has increased.  There are many reasons to worry that the whole Mazars review could follow Winterbourne view into the long grass and the wilderness, even though, unlike at Sloven, at Winterbourne View nobody actually died as a result of the non-care and neglect.

As I say, much of this got lost for a few days in the Christmas run-up.  Lots to do, and we miss my Dad especially at this time of year.  My parents were married just a few days before Christmas, so it was an extra-special festival in our family.  Dad always did the cake, with his special home-made marzipan that is a million times nicer than anything that ever came out of a shop.  On Christmas Eve, after we went to bed, he would arrange some of Frederik Bramming’s cardboard Kravlenisser, which he and Mum had purchased in Denmark on the way back from a snowy Scandinavian honeymoon, on the curtain rails and picture frames. There they would sit, laughing at us and each other, for the full Twelve Days.

Without Dad, it’s difficult.  As it is for lots of people, whether because they have lost someone, or are alone, or are ill, or don’t celebrate for other reasons.  It’s a time when it’s easy to feel excluded or overwhelmed.  After she posted this, I sent Nico’s mother a picture of a tree decorated with sunflowers.

It wasn’t ideal  as Nico’s sunflower-tree, as it didn’t have all the right colours on it; but it was the best I could do in limited time.  We were due to gather at my youngest brother’s house, on Christmas Day, and there had been much to-ing and fro-ing over the wires and airwaves about who was getting what for whom, whether we were buying presents for the adults or only for the kids, who was contributing which component of the food, and what the theme was for the present-wrapping this year.  My sister is the queen of fabulous wrapping.  Each year she takes a theme and wraps to suit.  One year we all got parcels wrapped in brown paper and tied with buff raffia, with a trail of glitter-frosted ivy leaves wrapped around the string.  Another year, she had paper printed with sleighs and big jingle bells on top of each present.  The year my brother-in-law decorated the tree with peacock-feather baubles, she found silver bird tree-decorations to perch on the parcels and gave each one a peacock-eye tailfeather.

This year, however, Youngest Uncle and his other half had outdone themselves by completing a tree each.  Uncle’s, in the study/library, was all silver and crystal, with a few deep-red baubles as contrast, while his partner had gone for a multicoloured Victorian theme in the sitting room.  I had found some Victorian-looking cream paper printed with holly leaves for the presents from us, while my sister had wrapped this year’s parcels in metallic paper, with crystal snowflakes dangling from sequinned yarn.  Looking at the two contrasting trees, and with Nico’s sunflower tree still occupying one corner of my mind, I suddenly had a vision of a Justice Christmas Tree Festival.

I am pretty certain is is taking place somewhere in Oxford, although I’m not sure of the exact location – I didn’t really notice the sign at the entrance because I was looking at the Justice Shed banner.  It’s not a shed, anyway, it’s a big, stone-built hall, with narrow windows that allow the trees to be displayed against the walls. You might think it looks a bit like the Great Hall in the Harry Potter films.

First to greet us at the entrance is the tree that inspired the occasion: Nico Reed’s.  It is a blue spruce, decorated with, of course, wide-open sunflowers.  Their petals are edged with gold and their centres brushed with bright copper.  Copper-coloured tinsel winds round the branches, and between the sunflowers there are glittery pale-blue snowflakes as bright as Nico’s eyes, reflecting the pale blue and gold lights. At the top is the face of Nico himself, wearing his fur-trimmed red hat, a particularly beautiful nisse.

Next to it, against the north wall, stands Connor’s dark-needled fir tree, hung with a traditional red-and-green theme of untraditional miniature London buses and big shamrocks.  At the pinnacle, a huge multifaceted crystal casts rainbow splinters of light into every corner of the room, and showering down from it are many smaller drops of brilliance, each throwing out its own shards of colour, which intensify as the sun moves across the south windows, until all the out-of-the-way corners, for so long dark and unnoticed, are filled with light.

The #JusticeforLB tree has ribbons in blue, yellow and red; and crowdsourced padded fabric bauble shapes, each one appliqué’d with a George-Julian-style embroidered quotation.  In place of the fairy, a model of blind Justice flourishes her sword and scales.

Christmas Tree Festivals are usually charity fundraising events, but I am not sure that charities have a place in this one (although that tree behind the door, with the dark-pink ribbons and shiny pink pigs, might belong to @Mishap_Charity).  But this festival is really for individuals, not organisations.

Steven Neary’s tree has metallic ornaments shaped like old-fashioned microphones and miniature EPs, with candy canes and brightly-coloured sweets all round them, and a cherry Bakewell in place of the star.  Grenouille’s is almost monochrome: silver tinsel, a few dark-blue matt-metal baubles, and many dangling strips striped in pearled white, iridescent black and silver, representing chromosomal conditions.  The star at the top is actually a starfish.

Here is Ollie’s tree, hung with horseshoes and bright with bunches of glowing colour-change  fibre-optic  filaments.  Here is Naomi’s, garlanded with cut-paper festoons and button-strings.

In pride of place, at the far end, and two or three times as tall as all the other trees, is the #JusticeForAllTheDudes tree.  You can’t really see what sort of tree it is, because is is covered, smothered, in – what else? – gingerbread people.

By next year, here’s to being able to see our way out of the wood and admire the trees.

Positive Outcomes.

Tags

#justiceforLB, Connor Sparrowhawk, inquest, LB Bill, Local Authorities, NHS, preventable deaths, Sloven Health

Friday afternoon.  The verdict finally came in at LB’s inquest.  In an ‘you don’t need a weatherman’ kind of way, the jury’s questions to witnesses had suggested they were finding the family’s perspective on events more convincing than the Trust ones.  Still, the extent of what the jury eventually found was more than I, for one, had dared hope for.

They didn’t buy the ‘died elsewhere’ finagle, stating firmly that Connor died in STATT, not at the John Radcliffe Hospital.  They said that his death was ‘contributed to by neglect’ and set out a laundry list of serious failings, both within the unit, and beyond it.

It was exactly the right verdict, and the only shame was that it had taken so long to arrive: 824 days, to be exact.  I watched the BBC news segment and hoped Connor’s family weren’t feeling too poleaxed by the media interest.

After Dad’s inquest finished, I remember being a peculiar mental place where most of my thoughts seemed suspended, but also twin-tracked.  My body, voice and volition still seemed to be operating effectively, and one track of my consciousness was observing and noting this with rather surprised approval.  The other track seemed to be running through an empty cavern of what just happened? so vast that all I could hear were echoes of thoughts that petered out into nothingness.

I remember handing out the family statement to the journalists and saying brief goodbyes to my mother and siblings; and then, of all the bizarre things, rushing to a shop to pick up a Dalek costume for Eldest, who was off to a Dr. Who convention the next day.  I know I had just enough time to skedaddle to the station and make it across the platform and into the train, about 5 seconds before the doors slid closed.  After that, it is pretty much blank.  Thinking back to it now, I have a sensation of vacuum in my head, as though all my thoughts had been sucked out into that whispering void.  If you’d asked me a question, I could probably have given you a pretty logical-sounding Track One answer.  But the real me was lost, somewhere down along Track 2.   Fortunately for me, I didn’t have to answer journalists’ questions.  They were content with the pieces of paper.

Connor’s family, on the other hand, walked out of court into a battery of cameras: BBC; ITV; Channel 4; journalists asking for reactions to the Sloven ‘apology’ (which the Slove PR department extruded within minutes of the verdict being delivered; it went to the media, not to Connor’s family).  On this Friday evening, I felt that familiar blankness of relief and released mental tension; I imagined Dr. Ryan might well also be beyond ordered thought or identifiable feelings.  Late the following morning, she tweeted, ‘Still no coherent inquest thoughts’.

I watched the television segments about the inquest.  Channel 4 and ITV pitched it pretty near perfectly, although I was still shouting into the ether when Sloven’s Medical Director said she was sorry for ‘what happened to Connor’ (“NO! You should be ‘sorry for what WE DID to Connor and for how WE FAILED him by not providing proper care’, you wretched woman!”) and when she began huffing and eye-rolling, even as she strained to avoid being verbally critical of Connor’s mother, I nearly sent the remote through the screen.

But Friday’s 10pm BBC report by Michael Buchanan bothered me.  For me, it was jarring almost from the outset, starting by saying that Connor ‘died tragically’.  I was disappointed to hear a BBC reporter using a rhetorical flourish that could have been lifted straight from the Sloven Manual of Duplicitous PR.  Justice for LB has been calling out the ‘tragedy’ trope for eighteen months; and still is.  Regrettably, I found the ending of the piece even worse: after alluding to Justice for LB and the LB Bill, it finished by saying that Connor ‘would not have died in vain if the NHS learns lessons from his preventable, untimely death’.

That had me squawking at parrot pitch again.  As did the question on BBC Breakfast on Sunday about ‘what positive things have come out of your (Dr. Ryan’s) experience?’; the questioner was clearly angling for a triumph-from-tragedy story.

Listen up, and listen well, folks, because here is where I lay it on the line for you.

There ARE no upsides to losing a child.  The unnecessary death of a young man is not something that has positive aspects, spin it how you like.  Connor’s death WAS in vain.  His death was pointless and neglectful and preventable and appalling and couldn’t-care-less and just plain wrong in every respect.  Nothing, nothing, can redeem that.

He was sacrificed, not to some greater good (as if any good, however great, could merit such a sacrifice) but to organisational cheeseparing and the vanity of clinical and managerial staff.  In their egotism, certain of them refused, and still refuse, to acknowledge, or even admit the possibility, that they were in error of any kind.  Some, like the psychiatrist Valerie Murphy, mulishly insist that they made correct decisions at all times.  Others, like the Chief Executive Katrina Percy and Medical Director Lesley Stevens, make media-friendly, reputation-gilding, unforgivably tardy non-apologies or half-apologies; all of insulting inauthenticity.

But even if these monstrous egos could be deflated and brought to genuine remorse; even if every Health Trust and Local Authority in the country learned the lessons of LB’s death and put them faithfully and carefully into immediate practice; even if LB Bill were to be passed tomorrow and fully implemented the day after – Connor’s death would STILL be in vain.

Simply, it shouldn’t take the unnecessary death of a young man to prod organisations and people into doing the right thing.   It shouldn’t need that, and it certainly isn’t worth it.  Connor should still be here, living a good life the way he wanted to, and they should be doing the right thing anyway.

 

Educating Lisa.†

Tags

appropriate vocabulary, mothers, NHS

The day Grenouille was born was one of the best days of my life.  It was a Sunday, syrupy with late-summer warmth.  In the afternoon, Eldest plumped for a visit to the koi carp farm as a family outing.  His Papa chose the short route, which had recently been fitted with speed bumps whose profile appeared to have been modelled on the Matterhorn.  I yelped as we bounced over the first one, and even though P slowed the car, each subsequent bump felt like a blow to my lower abdomen.

At the farm, the fish swished lazily in their pools like the aquatic equivalent of tortoiseshell cats.  It was too hot under the glasshouses.  Even out in the carpark, the sun beat down.  On the pond opposite, a swan glided in serene dignity, its wings arched over its back.  Suddenly, it upended itself, feet beating furiously at the pond surface, sending a great flurry of brownish-white water high into the air and leaving its bum stuck out of the water, quivering.  E pealed with delighted laughter.

Since we couldn’t join the swan in the water to cool down, we decided to move on to our local stately home, where a public footpath through beech and fir woods offered shade.  The beechwood was dim and golden, and the fir trees further down the hill threw deep green shadows at the sides of a pale, sandy path.  Shafts of sunlight slanted between the branches and dust motes danced up and down them.  We moved slowly from one patch of shade to the next, but at the bottom, where the woods opened out into grassland, I decided I’d had enough.  The ache at the base of my belly hadn’t gone away since the speed bumps episode, and now it felt like the sore place had a bowling ball pressing down on it.  We toiled laboriously back up the hill.  I had to stop at intervals, as the bowling ball threatened to sink right into my pelvis.  Back in the car, I realised that the intermittent heavy feelings were actually contractions.  I made P go home via my friend Chrissie’s house; she had promised to lend me a low bedroom chair that was a perfect nursing seat.

Chrissie was slightly surprised to see us.  “I thought you weren’t due for a week or so,” she said, despatching her husband to fetch the chair down from her daughter’s bedroom, and eyeing it doubtfully as he brought it downstairs.  “I’m afraid it’s a bit grubby from the kids scrambling all over it.”

“No worries, I’ll put the upholstery cleaner over it this evening. “

Chrissie inspected my middle even more doubtfully than the chair.  “Do you really think you’ll have time?” she said, as a muscle-wave swept over it, visible under my clinging T-shirt.

At home, I phoned my midwife, Mary, to warn her that I might be calling on her services later that night.  P sorted dinner and put E to bed while I scrubbed the upholstery shampooer all over the chair, pausing at intervals to lean heavily on the nozzle and take some deep breaths.  I finished about 10pm, and P carried the chair up to our room.  At half-past, I told him it was time to call Mary again.

She arrived as I was halfway up the stairs, on hands and knees and focussing very hard on my breathing.  She laughed.  “Well, I don’t think you called me out too early!  Do you want to go up and down a few times?  Stair climbing is great for getting things moving along!”

I peered round under my elbow at her.  “No offence, Mary, but I think when I finally do make it to the top of these stairs, I’ll be staying put for a while.  I feel like I’ve done enough up and down for now.”

G made an unfussy entrance not very long afterwards.  The waters didn’t break until just before the birth, which Mary said often made things easier.  I stayed crouched low on on all fours, breathing hypnotically, and G slithered down the gentle chute of Mary’s hands to land face-up between my knees, squinting lopsidedly at me.  I was instantly entranced.  It was so different from E’s hospital birth, where he had been whipped away before I’d even seen him, stuck under a warmer and cleaned up before I was allowed to touch him.  When they brought him back, I wasn’t quite sure he was mine.  I picked G up out of the puddle of birth fluids myself, the thick, purple cord between us still pulsing strongly, and Mary wrapped us both in a large, warm towel.

I didn’t know it then, but Mary was worried.  For a baby who had had such an easy birth, G had a low initial Apgar, and there had been meconium in the waters.  She suctioned G, to prevent meconium aspiration, and stayed with us until 8 in the morning – long after I had pushed out the placenta, G had had a first feed, I had showered while P cuddled G to his bare chest (“Get your shirt off!  Babies need skin-to-skin!” said Mary) and drifted into contented sleep with G tucked up next to me.  Then Mary drove straight to our GP’s and waylaid my doctor on her way to her morning surgery.

The doctor came the next day to do the newborn check.  Two days after that, she came back again, accompanied by Mary, to explain that they had some concerns about G, and had made an appointment for us to see the paediatrician at the local hospital the following noon.  “And,” said Mary, “I shall come with you, unless you don’t want me to.”

The next day, we dropped E off at a friend’s house for a lunchtime playdate and drove to the hospital.  A dark-haired woman whose badge on a lanyard proclaimed her to be Dr. Lisa N-, paediatric registrar, clerked G in.  Lisa was puzzled as to why someone hadn’t already checked G out by “walking past the end of the bed while you were on the maternity ward”.

“Er, because G was born at home.”

“Oh, I didn’t realise you had a home delivery.”

“I didn’t,” I said, rather irritated.  “G had a home birth.”

“Ah, um, er, yes.” said Dr. Lisa.  She turned to Mary.  “And you are Granny?”

Mary smiled wickedly at her. “No, I’m Kara’s midwife.  Mary Lloyd, independent midwife.”

Dr. Lisa looked still more flustered.  “Oh.  So did you do the delivery?”

“No. Kara gave birth and I caught the baby.”

Dr. Lisa put down her pen and looked straight at Mary.  “You don’t like the term ‘delivery’ either?”

“Kara feels – and I wholly agree with her – that it’s a term that implies passivity and imposes object-status on mothers,” said Mary.  “It’s terminology centred on the medical practitioner.  Woman-centred language is: Mothers give birth; babies are born.  If you ever have children yourself one day, I hope you’ll find you can actively give birth rather than passively be delivered.  As women, none of us can afford to give our power away by using feeble words.”

Dr. Lisa opened her mouth, closed it again, looked slightly stunned.  “Mmn, I can see I need to consider my vocabulary,” she said, picking up the pen again and moving on to the next lot of questions.

The paediatrician came in.  Dr. Lisa presented to him: “… and Mary here was the midwife who did the home delivery…”

“I attended G’s birth!” said Mary.  “You’re talking about Kara’s baby, not a pizza!  Home births mean babies, home deliveries mean fast food!”

Lisa turned scarlet.  “We, er, we were having a discussion about appropriate language,” she said to the paediatrician.  “I think I’ve just been taught something I’m not going to forget again.”

*****

*****

† The alternative title for this post was going to be, Extirpating Pizza.

Selective Hearing and Elective Mutism.

Tags

#107days, (un)accountability, High Ordeals, institutions, NHS

This week’s #107daysofaction has been about listening – or not – to families. Katherine Runswick-Cole blogged on Bettelheim and mother-blaming, Sara Ryan on speaking up for your family member, and Mark Neary gave us another chilling portrait of institutional deafness.  I’ve had similar concerns going round in my head for months and months now.

An acquaintance, whose child receives 1:1 health worker support in school to manage a life-threatening medical condition, last year gave permission for one-off participation in an educational activity which the child does not routinely access. The school’s trained risk assessor, with health-risk assessment input from the healthcare worker, devised a safe way of delivering the activity to the child on that occasion, using 3:1 support.

The healthcare worker was subsequently disciplined by the Trust for not preventing the activity.  Healthcare managers visited the parent at home and tried to get agreement that proper parental permission had not been given for the activity.  The parent repeatedly asserted that permission was in fact given, but felt that the managers’ attitude and language implied the parent was lying to protect a worker to whom the family had become ‘too close’.  The managers then declared that even if given, the permission was invalid because it was in an improper format and from a parent insufficiently informed to understand the ramifications.  The parent was incensed:  “Are they trying to say I was too ignorant to give permission, or just too stupid?”

What seems to have riled the heid high yins of the Trust, is that an ‘unqualified’ parent and a lowly healthcare assistant trespassed on their fiefdom by daring to take part in decision-making with school staff, but without deferring to, and involving, the almighty expertise of the health management.  Things which tend to support the idea that management took a hissy fit include the conduct of the disciplinary investigation and the disciplinary panel.  An ‘independent’ member of management – i.e. a manager out of the worker’s direct line of reporting – was charged with investigating and reporting on the incident, but:

– Did not follow agreed procedure;
– Did not consider the legal and practical responsibilities of, and limitations on, the health worker in school;
– Failed to seek evidence from the school staff and school management;
– Did not refer to, never mind place any weight on, the parent’s responses to the managers;
– Cited the one clause in the worker’s contract that could be construed as requiring supervisory oversight during risk-assessment, while ignoring several others that mandated routine independent risk-assessment and joint working with education staff;
– Ignored the provisions of the child’s care plan, which required the worker to risk-assess;
– Accepted, without any supporting evidence, management assertions that there was a risk referral system (there wasn’t, and never had been);
– Refused to accept, despite supporting evidence, that permission had been given and suitable risk-mitigation put in place;
– Took no account of customary practice; and
– Did not seek to check that delegation, training and supervision had been set up and delivered as claimed by management (they weren’t, and hadn’t been for some time).

In spite of all its faults and omissions, the worker was found on the basis of the investigation report to have committed gross misconduct and the severest sanctions were applied.

The worker, together with the Union representative, did huge amounts of work to find evidence to refute the allegations.  Some of the school’s other healthcare workers had been interviewed by the investigator.  All mentioned that the worker was known to have a high reputation, but each agreed, with some or with marked reluctance, that the worker’s conduct might be blameworthy in the scenario as described by the interviewer.  When the Union rep contacted the co-workers to ask if they would be prepared to give evidence in person about the qualities of the worker and their understanding of the scenario, they all refused.  All seemed to be fearful about what might happen to them if they spoke up.  The Union rep then contacted the parent, and on hearing what was happening, the parent volunteered to act as witness for worker, to state that valid permission had been given for the activity.  The Union rep – also a Trust employee – subsequently mentioned having been the recipient of pointed remarks from managers on the subject of being overzealous in trying to find staff witnesses, although according to the rep, no pressure to appear had been put on anyone – they had merely been asked, and any refusals accepted at face value.

At the hearing, the parent was told, dismissively, by member of the disciplinary panel that even valid parental permission and school risk-assessments or management plans did not override the health worker’s duty to determine suitable activities and prevent ‘unsuitable’ ones.  The parent was stunned and asked the panel, “When did Trust personnel take over my responsibilities?  When did my child become a looked-after child?”  The only response was huffing and eye-rolling.  The school staff who had also volunteered to come, as witnesses to the risk-assessment procedure, seem to have been similarly rudely treated; apparently there was much fury and a few tears of outrage in the anteroom after evidence had been given.

In the end, it was the school’s risk assessment trainer – a very senior healthcare professional who is now an independent consultant to settings that care for children with complex medical needs, and who, like the education staff, had volunteered as a witness – who gave the evidence for the worker that tore to shreds the allegations, the management’s supposed superior risk-assessment capability, and the way the healthcare workers were managed and (un)supported when working with the child in school.

Once all the substantive allegations had been disposed of, the management seriously considered changing the accusation and disciplining the worker for ‘risking the Trust’s reputation’.  The parent threatened to go to Press and allow the public to judge precisely who had put Trust’s reputation at risk, pointing out that it was the child who had been at significant risk, and from the actions of the Trust, not the worker.  After disciplinary proceedings were begun, and the worker removed from duty, the parent had been left without trained cover for lengthy periods of time and on several occasions had had to stay awake to the point of dangerous exhaustion, in order to provide the round-the-clock observation and care that the child must have.

After all this malarkey, family is now so distrustful of health service management that it is embarking on the personal budget route for the child’s future care. And an excellent healthcare worker – the most capable, conscientious and trustworthy, says the parent, of all who have ever cared for the child; one who cares not just for, but about the child – has been off work for the best part of a year.

I wonder if that ‘not just for, but about’ is the nub of the problem.  ‘Caring for’ is a professional activity: seen as regulated, neutral, dispassionate, cerebral, theoretically-based, rational, considered and orderly.  ‘Caring about’ is unprofessional: therefore unregulated, involved, emotional, visceral, practically-based, instinctive, reactive and messy.  It can’t be reduced to spreadsheets and tick-boxes, it can’t be fitted in to predetermined slots.  It spills over, like life, like laughter.  It doesn’t respect professional pomposity and it threatens professional power.

As such, it is dangerous for professionals to listen to the voices of those who ‘care about’ – mostly, but not exclusively, family – unless they are prepared to give up their power and thereby risk their professional status and, potentially, the income that derives from it.  Even worse is to suggest that other professionals besides one’s self should listen, as that threatens whole swathes of professionalism.  The safe thing to do, professionally, in a status-defined field of work, is generally to keep schtum oneself, and suppress anybody else who looks ready to speak.

Selective hearing and elective mutism work fine as defences for power, until power comes up against someone who has so little of it that they have no stake, no interest in maintaining the power structure and are happy to kick the supports away.  Striving to maintain the appearance of power then becomes less a method of defence and more one of shooting yourself in the foot.

The parent in the story above is going to walk away from the power-game with the budget-ball, leaving a reduced service that will probably, eventually, need a reduced number of managers.

The health worker was so pulverised by the spitefulness of the way the disciplinary was handled, and the threat that over a decade’s dedicated work would be utterly obliterated by what was basically managerial arse-covering, that all the energy and thought that had previously gone into work was redirected to building a defence case, with results that must be deeply uncomfortable for all in the Trust hierarchy.  What’s more, when that worker is back in post, it is pounds to pennies that they are not only going to do everything by the book, but they are going to allow zero leeway for management to do things other than by the book.  In future, says the parent, that worker is going to be stamping, hard, on any toe that comes even a fraction out of line.

The school staff are not answerable to the Trust, and resented the implied attempt to impugn their conduct in their own areas of professional responsibility.  It was the school that initially alerted the risk-assessment consultant, by calling them in to double-check that education staff had in fact done things properly.  The consultant wasn’t prepared to have their training smeared-by-implication either, so volunteered for witness duty.  Although a health professional, the consultant now works outwith the NHS, so had no inhibitions of loyalty to the Trust to prevent them from doing a thorough demolition job on the execrable management case.

Everybody knows that sooner or later, the tactic of sticking one’s fingers in one’s ears and humming loudly is bound to fail.  Eventually, the elective deaf-mute will have to listen, and have to answer for their actions.  Much better to start off by listening carefully, so that you actually hear what is being communicated; and by speaking up whenever (but only if) you’ve got something worth saying.