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Who By Fire

Tag Archives: NHS

Adulting.

22 Sat Jun 2019

Posted by Kara Chrome in Uncategorized

≈ 4 Comments

Tags

adult LD services, assessment, care in the community, Local Authorities, NHS, true stories

So cheesed off. It’s the longest day of the year and I think I can say without fear of contradiction that the gold-to-tailings ratio of events chez Chrome in the first six months of 2019 has been notably poor.

Between Christmas and Easter, Grenouille had two bouts of gastro problems that put every other system in G’s body out of kilter, and resulted in a fortnight of bed rest each time.  Bed rest for G means next to no rest for me; as the only adult in the house, Monday to Friday, I get to do 24-hour lone-pilot duty.  For a whole month.  Yippee.

The run-up to the Brexit-that-didn’t in February and March was hideous. Along with hundreds of thousands of other Britons, G’s continued existence relies on European-manufactured medicines whose supply could not be 100% guaranteed in the event of a no-withdrawal-agreement crash-out.  One of the most discouraging things about it, was Brexiters among the people I’ve thought of for decades as friends, telling me to stop drama-queening and whinging on, it would all be ‘fine’.  It didn’t seem to matter to them that I had done the research on current stocks, usage and likely blocks to replenishment, and was genuinely frightened for G’s life if there were to be chaos at customs and gaps on pharmacy shelves. 

In the last week before 29 March, I felt physically ill with apprehension.  The news lurched from the one million march, via a failed Chequers summit, cliffhangers of indicative votes, to desperate resignation-for-a-deal offers from the Prime Minister, before a last-gasp third meaningless ‘meaningful’ vote – on (non-)Brexit day itself – put leaving off for another month or two.  I lurched from feeling sick with fear, to feeling sickened with relief, knowing that it would all come round again in May, or June, or October.

G is expected to have some major surgery in the nearish future.  It was supposed to happen last year, and didn’t, and then it was supposed to happen in the early part of this year, and hasn’t, and at the rate we are going, it may not happen by Christmas either.  However, its alleged imminence has meant that we haven’t been able to plan anything.  Holidays, work trips, visits to friends and family, have all been put on hold or organised in a last minute scramble.  It’s an unpleasantly stuck-in-limbo way to live.

E came home in April, for the week before Palm Sunday.  I drove him back to university and returned home feeling cramped and numb after the long round trip. The next day, I could not feel my right leg at all from the waist downwards and my left leg was without sensation down the back.  I could still walk, but my proprioception was badly off.  My legs felt like your face does after the dentist gives you an injection for a filling – movable but dead.  The GP told me not to drive any more and referred me to the hospital for an MRI and ultrasound scans.  I spent the whole of Maundy Thursday as a day-patient on the orthopaedic ward, feeling somewhere between prematurely aged and ridiculously juvenile, as all the other women in my bay were in their 80s and 90s.  After enduring  a lot of poking and prodding, two claustrophobic passes through the scanner (being maddened by the beat of reggae played through the headphones clashing with the unsynchonised ‘Whum-whum-whum’ of the machine) and a remote consultation with the regional neurocentre, I was diagnosed as having half a dozen ‘dehydrated’ and bulging discs in my neck and lower back pressing on various nerves.

I asked about physio. You have to self-refer these days, a complicated process involving a massive online form and random appointment times.  I can’t do random; events have to fit into G’s timetable, or they don’t happen, so I spent a couple of weeks’ Carer’s Allowance on three 20-minute visits to a private physio instead. Two months and a lot of exercises later, I just have numb soles to my feet, a very sore right knee and a healthy aversion to carrying heavy shopping.

During the Easter holidays, the transition social worker and a commissioner from the CCG came and did an initial assessment of G’s future care needs.  They decided that a full assessment for continuing health care was needed, and came back in the May half-term, with another nurse, to do a full assessment. Three and a half hours of trying to explain all G’s healthcare needs, and it barely scratched the surface. The outcome arrived ten days ago: a resounding ‘No’.

Unfortunately there are some things that G needs help with, on a daily basis, that Local Authority social care workers simply will not be permitted to do. Even the medical respite Health Care Assistants are not allowed to do them, only registered healthcare professionals (i.e. nurses or doctors…) and, of course, good ol’ Mum and Dad. So the decision needs to be appealed, and guess who has to do it?  Not the transition social worker, who, you would think, would have a far better idea of these processes than I.  Nope, the whole shebang has been dumped in my lap, while the social worker, jammy besom, has swanned off on holiday.

I put out a slightly panicked appeal on Twitter and got some very useful feedback (thank you, peeps).  I contacted a disabled people’s support charity and a solicitor.  I compiled a list of relevant legislation, statutory guidance and case-law, tracked it all down on the Web and read grimly through it.  It was like being hurled back fifteen years to when I was desperately researching Statements of Special Educational Needs, up against the deadline of G starting school, except this time my deadlines are a lot shorter.  I got a snakes-and-ladders feeling that I’d slid right down the massive python that spans the board from 99 to about 8.

And today, on the longest day of the year, the first properly sunny day we’ve seen for well over a week, I sat down in front of the computer, with about 23 tabs open in the browser, and piles of paperwork all over the desk, and spent the best part of eight bloody hours composing a long appeal email.  Finally, it was finished.  I went to make myself a hard-earned cup of tea before G came home, and in the ten minutes I was gone, Windows decided to do a software update and restarted the computer. Without saving my as-yet-unsent email.  I stared at the screen in disbelief.  I rummaged in the ‘Draft’ and ‘Deleted’ folders, but I had been working on the email offline.  It was gone forever.

A key rattled in the door and G came in from College.

I burst into tears, big gasping sobs and howls.  G was, not unnaturally, highly alarmed, and did not find my explanatory wails in the least reassuring.  I babbled apologies, but I could not stop crying.  G presented me with the phone: “You need to call Daddy.”  I keened down the line at P for a bit, but he was struggling to make sense of the bawled and mangled syllables that assaulted his ears, and in the end I told him I wasn’t fit to be talked to and hung up.  G propped the iPad in front of me, a favourite song already open in YouTube. “Music might help, Mum, it calms me down when I’m sad.  Would you like a hug?” I accepted the hug, and listened to the songs, and after a while felt the misery and fury begin to recede. I still couldn’t remember a single thing that I had written.  I knew there were six heads of argument, but what they were I had no idea.  Every single one of them had vanished.  My head felt as empty as a blown egg.

Slowly and methodically, I began saving the URLS on the open tabs and closing them down. Couldn’t face trying to reconstruct a whole day’s work until I’d had some time off.  I stacked the paperwork and put it to one side. I looked out of the window at the sunshine on the garden and thought of cooking and the various other chores awaiting my attention, and then I thought, what the hell, and opened up the Spider Solitaire.  I am, I thought, sick to bloody death of adulting, I’m going to be mindless and irresponsible for a bit.

I was halfway through the second game when G came in and plonked a pink post-it note on my desk.  I deciphered the lopsided writing and thought, whatever anyone may want to say about G’s academic accomplishments, there’s no denying that my Froglet has Mensa-level emotional intelligence. G’s 18th birthday is still a few months off, but the adulting thing?

Nailed.

(Mum (k)now how feeling but never give up it is hard).

The Chair of Anthropolyatrics.

31 Wed Jan 2018

Posted by Kara Chrome in Uncategorized

≈ 5 Comments

Tags

#justiceforallthedudes, #Mazars, adult LD services, learning disability, Local Authorities, NHS, Richard Handley

During the morning of the second Tuesday of Richard Handley’s inquest, Wendy Read, one of the United Response staff workers at Bond Meadows when Richard died, was giving further evidence.  The issue of the interplay between Richard’s deterioration in mood, and the worsening of his constipation, came up again.

“There’s been a lot of talk about Richard’s deteriorating mental health.” said the Coroner.  “Could you outline what that looked like, please?”
“Becoming withdrawn,” said Ms. Read, “Staying in his bedroom, not coming downstairs for breakfast, sometimes lunches; not dressing properly; not taking care of his personal care; not going to the day-centre.”

“You’ve told us there was consensus this was deterioration in his mental state,” said the Coroner.  “Was there any discussion that you can remember about whether any of those things might have been related to Richard’s physical health?”
“No,” said Ms. Read.

“Is it possible,” asked the Coroner, “That this could have been because he may have been physically feeling uncomfortable?
“Possibly now,” said Ms Read, implying that no-one thought of it at the time, “Yes.”
“So that is a possibility,” said the Coroner.
“Yes, possibly,” agreed Ms. Read.

The Coroner followed up.  “At any point in those last few months, do you remember anybody saying it could have been a physical problem?”
“I don’t remember,” said Ms Read.
“You have no memory of anyone discussing a physical problem?”
Ms. Read confirmed she had no such recollections.

Sara Ryan went twitterballistic.  Almost unbelievable. People like Richard (and LB) only have mental health issues. Physically, they are perceived invincible.

Not ‘invincible’, I thought.   ‘Insensible’.  Too different from the rest of us, too lacking in cerebral function to notice bodily discomforts, still less be disturbed by them and manifest that disturbance behaviourally.  Not for the learning-disabled, a belly-ache-induced grump, or an incubating-cold lethargy, or post-seizure sleepiness.  Poor mood is a sign solely of mental illness.  So the learning-disabled don’t need treatment for physical ailments that don’t show florid physical symptoms, but neither can their limited minds benefit from mental health treatments based on ‘higher’ brain functions, such as talking therapies.  The only possible treatments will be drugs and other restraints to control or damp down the disordered manifestations of their physical (oh, the irony!) neurology.

Mark Neary, who has watched his son Steven suffer the agonies of nonalcoholic steatohepatitis as a result of this approach, pointed out: It’s set up that way at transition.  Throughout childhood Steven was under a paediatrician.  At 18 he suddenly came under a psychiatrist.  No reason except for age change.

At the moment, G has six-monthly visits with the paediatrician, who makes sure the wheels haven’t come off in G’s various areas of specialist secondary and tertiary care, checks everything’s all right with therapies and education, has a think about anything new that may have come up, and writes a long, detailed letter to the GP, copy to me, so everybody knows where they’re up to.  G has never needed CAMHS or psychiatric involvement and, absent some hideous catastrophe, I am confident never will.  But at 18, oversight of G’s care will pass to the GP; or, if there’s a Learning Disability consultant involved, that person will be a psychiatrist.

Recently, G got yet another new diagnosis.  Looking back over old texts and emails to G’s Papa, detailing days-off-school and the outcomes of GP and paed visits, I reckon this one’s been creeping up on us for about four years.  The GP did some desultory investigations, but once infection was ruled out, the matter dropped.  Not so with the paed.  Every visit, it was, “And how’s the <relevant bit> been since last time?  Not so good, eh?  I wonder if…”  Further tests were less than conclusive, but the paed still wasn’t satisfied, and referred G to New Specialist. New Specialist took a good hard look, came up with a diagnosis, prescribed a suitable treatment and management régime, and G has been a great deal better since.  It’s hard to imagine that a psychiatrist would have been so doggedly persistent about a physical matter, and the GP was already stumped.  I’ve since found out that this new (and lifelong) condition is commonly not diagnosed until people are nearing middle-age and have been suffering for decades.  Large bouquet and grateful thanks for the paediatrician.  And a lot of worry for the future.  Even post-18, G really needs the holistic involvement of the paediatrician.  And it won’t be available.

Well, yes, wrote John Lish, The clue is in the name. If they were ‘anthropatrician’ then it would be a lifelong relationship.

Point is, I replied, a paediatrician is a secondary-care generalist. A psychiatrist very much isn’t. Why are LD people put under mental-health secondary-care instead of general adult secondary-care?

John responded, Other than the GP, there isn’t really an equivalent generalist role. A psychiatrist is probably seen as ‘best fit’ but underestimates the continuing barriers to physical health.  Creating an community based adult generalist might be the way forward.

I’d already mentioned my worries about loss of the paed rôle in a few years, to one of G’s (many) secondary-care consultants.
She sympathised.  “We have so many more complex young people surviving into adulthood these days,”  she said.  “Sometimes their care is more than it’s fair to ask GPs to take on.  We really need a specialism for adults with complex or multiple health conditions, but there aren’t any except in elderly care.  In the past, I have referred some of my complex 18-year-olds straight to geriatrics.”
I boggled.  “Er, doesn’t seem awfully appropriate to be referring 18-year-olds to a service designed for 80-year-olds.  Would they not feel terribly out of place?”
“Oh, no, no, ‘gerries’ are lovely,” she said, warm enthusiasm in her voice.  “They’re the last generalists standing.”  Hmmn, I thought.

(Like anthropatrician, btw, I wrote to John. Could be excellent recruiting incentive?). By which I meant that I could imagine some doctors might like the idea of being called ‘patrician’. G doesn’t have psychiatric or mental health difficulties. Lots of physical problems requiring specialist continuing care, and a spiky learning ability profile, but nothing for a psych to do. Why even go there? Roll on anthropatrics!

John wasn’t letting the grass grow.  Okay, so how do we get anthropatrics established? Transforming Care has to progress to preventative and better quality support/outcomes for LD people.

We batted a few ideas around.  Looking at how geriatrics became established as a discipline and thinking how to replicate the drivers behind its development after the Second World War.  Thinking whom to rope in on the NHS side.  John went off to put his strategic-policy thinking cap on, and I began to get an attack of the wordnerderies.

‘Patrician’ somehow sounded off.  I knew it derived from the Latin word ‘patricius’ (of noble rank).  While doctors might be flattered to be named part of the nobility, I didn’t see how that fitted with the other ‘ician’ names.

I looked up ‘paediatrician’ .  Derived, not from Latin, but from two Greek words, ‘pais’ (child) and ‘iatros’ (doctor).  So the word would have to be ‘anthropiatrician’, from ‘anthropos’ (human).  But ‘human doctor’ doesn’t say much.  That could apply to any medical practitioner, except, I suppose, those in veterinary medicine.  (Not but what input from physicians who are used to reading non-verbal clues to their patients’ conditions and/or pain might be useful).

So, the word for the proposed specialism needs to say “a humans’ doctor who specialises in complex, multiple conditions” … an anthropolyatrician?  I think anthropollies might sit very nicely between the paeds and the gerries, don’t you?

Get a meeting with Ray James, the LD lead for NHS England?  suggested John.  Might as well aim high.

Indeed. So, by ten years from now, how about:

The Connor Sparrowhawk Chair of Anthropolyatrics at Oxford, and
The Richard Handley Chair of Anthropolyatrics at Cambridge?

*****

*****

PS – Friday 02 February 2018

Linnet Mac sent me the link to this touching and beautiful account of her experience of searching for the right ‘adult paediatrician’ for her daughter, who turned out to be a palliative care specialist.
To Fin, to Iona’s current consultant and to all the clinicians who put in many extra hours to go the extra miles – thank you.

 

Shitstorm.

25 Thu Jan 2018

Posted by Kara Chrome in Uncategorized

≈ 6 Comments

Tags

#HandleyInquest, 'supported' living, coroner, court proceedings, Down syndrome, family, human rights, motherblame, NHS, preventable deaths, siblings, true stories

Right, you lovely lot, a few words, please. The ones from this book, mostly:

You may have noticed I indulge in the occasional sweary. Not desperately frequently; I was brought up to euphemise rather than curse. (My sister once acquired a boyfriend whose father turned out to be a Church of England vicar. My parents invited him and his wife to dinner; I was in the middle of a story – indeed the middle of a word – when my gentility reflex kicked in on autopilot:
“… and when we came out it was absolutely piss-sisting down…”. The boyfriend, who was a squaddie, burst out laughing. His father eyed him sternly. “Don’t you try that, son; you don’t have the aplomb to carry it off.” My Dad suppressed a grin; my mother looked bewildered.)

To be honest, I’m not much of a one for the f-word, except under extreme provocation. I don’t have the right accent for fluent and habitual use, especially in writing. I don’t care for the c-word and other specifically female words used as terms of abuse. Females are subject to far too much abuse in general, without having bits of their anatomy used as synonyms for ‘vilest shame’. It’s for much the same reason that I object to racist abuse or the r-word and all its nasty ex-medical cousins. But bloodys, arses, bastards – you’re welcome. And of course, my favourite, the excremental expletive in all its forms. Shit shite shitty shitey crap.

I’m sorry if it offends you, and can only suggest that if you are discommoded by it, you craft yourself a virtual clothespeg for your mental nose, because for the next three weeks this blog is going to be neck-deep in the stuff, in forms both literal and metaphorical, conceptual and weightily material, temporal and behavioural. And the shitty behaviour, I can tell you now, is not coming from people about whom behavioural concerns are usually expressed.

This is the story of the life and death of Richard Handley, whose inquest started on Monday in Ipswich. A life pervaded, shaped by and ultimately lost to shit; and where the dishing-out of shite, particularly to Richard’s family, didn’t stop with his death.

Richard was suspected from an early age of having a condition called Hirschsprung Disease, where the person lacks fully developed motor-nerves to part of their bowel (usually the lower end of the large intestine, near the anus). Wherever the nerve-endings, known as ganglions, have failed to develop, the gut cannot properly push digested food along; the nerveless areas do not relax normally to allow for its passage. As a result, the affected portion tends to contract, leading to a build-up of faeces above the narrowed area. Stool that hangs around in the guts for any length of time loses water and becomes hard, making it even more difficult to push out. After a while the hard stools can become ‘impacted’: cemented together in a solid mass that stretches (‘distends’) the bowel like an overfilled balloon. Sometimes, liquid faeces will seep around the blockage, giving the impression the person has diarrhoea rather than constipation. It’s vital that people at risk of impaction eat high-fibre foods, drink plenty to keep their stools soft, take stool-softening and laxative medicines if needed, and have enemas to wash out turds if they are not able to take a daily dump. Otherwise, the blockage can back up until their guts are filled end-to-end, swollen with rock-solid shit that presses on and squashes other organs, interfering with or damaging those other organs as well. Sometimes, bits of bowel can become so stretched or squashed that they lose their blood supply and die off, leaving a hole in the gut (‘perforation’). This is life-threatening.

To make a definitive diagnosis of Hirschsprung Disease, doctors look at X-rays of the person’s bowel to see if there are restricted and distended areas, and do an operation to take a small sample (‘biopsy’) of the lining of the gut at the point where it narrows. They then examine the sample to see if the ganglion cells are missing.

Hirschsprung Disease is rare. It affects more men than women, and it’s commoner among people with Down Syndrome than among the general population. Richard had Down Syndrome. He also had moderate to severe learning disabilities. His local hospital, James Paget in Lowestoft, advised after X-rays in 1998 that Richard should have a biopsy to see if he had Hirschsprung disease. Eventually, the clinicians decided against it, partly because they felt that the procedure was potentially distressing and/or physically risky for Richard, partly because they did not have suitable laboratory facilities for preparing the sample for examination under a microscope, and partly because Richard’s family managed his poo problems superbly, though a combination of diet, medication, bathroom physiotherapy, and turning the unpleasant aspects of his condition into fun for Richard.

Richard had a keenly developed sense of humour. He liked Mr. Bean, slapstick and visual humour, toilet and fart jokes. His family accompanied him on visits to the lavatory. “In order to have a bowel movement,” explains his mother, Sheila, “Richard needed his mind taken off what was happening, so he could relax and let go. That was the point of the games and physio. The games were things like throwing something in the air so he reached to catch it and giggled at the game. It meant he relaxed and wasn’t worried about going for a poo or if it might hurt.”

In spite of this careful management, in the late 1990s, Richard needed hospital procedures on several occasions to empty his bowel and to try to prevent future problems. At around the same time, his behaviour deteriorated and he was referred to psychiatry by the Learning Disability nurse because he was refusing to get out of bed, he was incontinent and he appeared scared. The psychiatrist diagnosed Richard with a depressive illness with psychotic features. Various professional people noted that the acceptability of his behaviour went up and down, as did the swelling of his belly. No-one seemed to wonder at this time if there might be some sort of physical-to-behavioural causative link. I don’t know about you, but if I had a bellyache and kept involuntarily soiling myself, I might be quite inclined to take to my bed and get snarky with anyone who tried to winkle me out of it for what seemed to me to be no good reason. But then I don’t have a learning disability, so people would have to look for some other explanation than ‘learning-disability-related mental illness’ for my sudden change in bedroom and bathroom behaviour.

Richard went into respite care in 1998 and then in late 1999 into a residential home. As part of his placement, he had a Statement of Health Needs, which specified ongoing/diligent monitoring of bowel function and management as part of his primary and secondary care needs and identified maintenance of bowel management programme as part of his non-negotiable, quality-of-life needs. Richard was given medication to treat his mental-health difficulties. Although some of these medicines had the unfortunate side-effect of causing constipation, through a combination of diet, medicine, exercise and meticulous (and meticulously-documented) bathroom support, Richard remained healthy and happy for several years. The agreed protocol was that if, in spite of his fibre, fluid and laxatives, Richard failed to have a bowel movement for three days, the District Nurse would be called in to do an enema.

Sometime in the mid-to-late 2000s, Richard’s care was altered. His Statement of Health Needs went into an old file that was no longer referred to. The District Nurse no longer came to do enemas. Initially, this was because his diet and medication meant she was not needed, but even when he began to miss daily poos, she was not recalled. A misunderstanding of the Mental Capacity Act by Richard’s support staff meant he was allowed to make very unwise decisions about the food he would and would not eat, even though he had been assessed on a number of occasions as not having the capacity to make health decisions. Even with support, Richard was not able to understand, retain, use or weigh information relevant to his health in making decisions about his diet. He should have had Best Interests decisions made for him, instead of being left to make choices that transformed his diet from high-fibre, high-fluid to low-fibre, low-fluid. The pursuit of the ‘independence’ agenda for Richard also meant that he was not accompanied to the bathroom any more, and proper monitoring of his bowel habits fell by the wayside. As his food became less and less healthy for his bowels, Richard became more and more unwell. The picture painted by the Serious Case Review of Richard at this time, (here given the pseudonym ‘James’), the ‘cheeky chappy’ who dearly loved a bit of toilet humour, is utterly heartbreaking

Serious Case Review: James (Flynn M & Eley R). October 2015, Suffolk CC SAB.

Around the same time, administrative changes in the Health Service, poorly implemented in respect of Richard, left his psychiatrist as his main medical contact. The psychiatrist did not do physical assessments of Richard and did not liaise with Richard’s GP to ensure that his physical as well as his mental health was being monitored. Both the psychiatrist and the staff where Richard lived interpreted his increasing lethargy, apathy, non-co-operation and poor self care, as mental rather than physical health problems. The staff, who did not have medical expertise, did not realise that Richard’s chronic constipation was not being dealt with by his laxatives, which were causing ‘overflow diarrhoea’: seepage of liquid poo around and past the unmoving solid stools.

In 2010, Suffolk deregistered a number of care homes, redesignating them as ‘supported living’. Richard’s care home was one of these and he signed a tenancy agreement, although his family queried his capacity to do so. The changes were supposed to give ‘service users’ more control over their own budgets, more choice in their activities and more independence. The rebadging also gave Suffolk financial advantages – for example, the newly ‘independent’ tenants were expected to organise their own cleaning; the Council did not have to pay the provider for this any more. The house promptly became untidy and dirty, as the residents were not capable of running a cleaning rota and staff were no longer paid to assist with maintenance. Another area of cost saving was in the inspection régime: while care home providers have to be inspected facility-by-facility, looking at individuals’ care plans, supported living providers are inspected centrally. This less onerous inspection regime was also less expensive. Someone whose health and care management was as complex as Richard’s, really should have had an alternative system of monitoring set up, to look at his individual needs and whether they were being met. Instead, the various people looking out for him – the home staff, GP staff, hospital staff, day centre workers, Richard’s family – were left doing the best they could in their own areas. No-one had an overall picture.

Richard’s family were told his health care would remain the same; they did not know (and had no way of finding out) that his health care and monitoring was already much reduced from the levels specified in 1999. They remained involved and contributing, but were not party to information about Richard’s life when they were not around. Richard limped on through 2011 and the beginning of 2012, his mounting uninterest in life ascribed, at his frequent medical appointments, to poor mental health and possible dementia.

On 10 November 2012, Sheila Handley had lunch with her son. She was worried by his swollen abdomen. The following day, Richard saw his father, who discussed, with one of Richard’s support workers, the grotesque size of his belly. On the 12th, Richard’s parents accompanied Richard and a support worker to a psychiatrist’s appointment. The psychiatrist had a high level of concern about not just the size, but also the hardness of Richard’s abdomen, saying he needed an emergency GP appointment. Richard did not get an appointment on the 12th and on the 13th saw a GP registrar, who did not know his history of constipation, and prescribed a large dose of laxatives, even though Richard had been taking laxatives and stool softeners daily for almost all his life. The psychiatrist, meanwhile, arranged an ATU admission for Richard, to address his declining mental health. On the 14th, Richard was taken to the ATU. He seemed unwell: pale and withdrawn. On arrival, Richard had the usual admission examination, and the state of his belly so alarmed the ATU staff that in the evening, he was transferred to A&E. He was found to have massive abdominal distension; his rectum was impacted with faeces and and an X-ray showed his whole colon was distended with impacted faeces.

On the 15th, Mr. Handley senior signed the consent forms for Richard to be examined under anaesthesia. Although the hospital recognised Richard’s lack of capacity, they do not seem to have made best-interests decisions and adjustments to their procedures. Richard was cannulated and anaesthetised under six-person restraint, screaming in terror. 10 kilos of impacted faeces – that’s 1 stone 8 lb in old money – were removed just from Richard’s rectum. When he woke up, he was, unsurprisingly, ‘non-compliant’ with treatment. In his shoes, I think I might have been a touch unco-operative as well. In fact, I’m pretty sure my mental processes would have run something along the lines of, “If one of you white-coated fuckers comes near me again, I’m going to sodding-well BITE you.”

Not that Richard was in much of a state for biting. Although his rectum (the part of his large intestine just above his anus) had been cleared, his colon (the rest of of his large intestine) was still full of solidified shit. He was given drinks but vomited violently and copiously, then passed ‘massive’ amounts of stool but still had a hugely swollen belly. Twenty-four hours after his operation, Richard’s vital signs were decline; his breathing became ragged, his heart-rate was irregular and he had not peed since he came out of theatre. He was catheterised. His oxygen saturation continued to deteriorate. Another X-ray showed his colon was blocked and his small intestine was also jam-packed. Both were pressing upwards into his chest, restricting his breathing. This pressure was also the likely cause of his vomiting; what he was vomiting was faecal matter. He needed to have his guts cleared out more, to take the pressure off his lungs. In the early hours of November 17th, the ITU consultant was called in, but before he could begin treating Richard, Richard went into cardiac arrest. Resuscitation efforts failed. By 2.15 a.m., Richard was dead.

On the first day of Richard’s inquest, the court heard from Richard’s mother, outlining his story. The pathologist who did Richard’s postmortem, Dr. Jason Wong, stated that Richard had died of a cardiac arrest, caused by asphyxiation resulting from aspiration of gastric contents that were vomited because of a large bowel obstruction that was in turn due to faecal impaction. In spite of the manual emptying of his rectum and his later passage of ‘massive’ quantities of stool, Richard’s guts were still so full of shit that they interfered with his breathing and caused him to throw up. He breathed some of the vomit into his throat and the main tubes leading to his lungs, and it stopped his breathing. “A description given in a meeting with the family by @IpswichHosp said Richard drowned in his own vomit”, said Sheila Handley’s counsel. “Is that a fair assessment in layman’s terms?”. “Yes,” said Dr. Wong.

Finally, Detective Superintendent David Cutler of Suffolk Police gave an account of his involvement in the safeguarding investigation into Richard’s death and detailed all the possible offences that he had considered – and then discounted – in relation to the events. Nobody had deliberately set out to kill Richard. Gross negligence manslaughter did not apply; there was not sufficient neglect for it to be considered criminal. He asked for an independent expert’s opinion on wilful neglect, but the expert only assessed Ipswich hospital and felt unable to comment on Richard’s care (and later housing) provider, United Response, and other services. The DS identified failings in service co-ordination in Richard’s daily life, and failings in his hospital care, in particular the length of time it took to refer Richard to more senior doctors, but felt that none of these met the Crown Prosecution Service’s evidential ‘Full Code Test’ for prosecution. He considered corporate manslaughter, but felt breaches of the ‘duty of care’ owed to Richard by various organisations were best addressed by regulatory authorities, not the justice system.

I have to say, I don’t hold out much hope for learning by and from regulatory organisations. I’ve encountered plenty of individuals who seem to be doing their best to re-set their personal thinking patterns and expectations, but the overall impression is of fragmentation. Richard’s family told everybody that he needed extra care, but didn’t know – couldn’t have known – that over time, most professionals seemed to have assumed that somebody else was taking main responsibility. In actual fact, there wasn’t anybody who had an overall view and nobody was ensuring that routine care was being done properly. In particular, Richard’s family, the repository and guardians of his life-history, were cut out of the documentary loop, while the information they had so painstakingly collated and transmitted was shelved. Suffering the consequences of ‘memory loss’ by the institutions into which they are moved seems to be a frequent factor in the deaths of people with learning disabilities. It was definitely in play in the deaths of Connor Sparrowhawk, Nico Reed and Deborah Molloy. It seems to have been a factor in the death of Thomas Rawnsley, who was seen by his family shortly before his death to be so poorly that he was falling asleep into his dinner, but whose concerns, arising from their experience of his previous bouts of severe respiratory illness, were dismissed.

Unless the common threads in these (and many other similar, not necessarily fatal incidents) are addressed and remedied by building in system failsafes, I have a nasty notion there will be plenty more deaths attributable to diagnostic overshadowing and to insufficient patience and attention being devoted to learning-disabled people. I checked the online record of the Coroner’s Prevention of Future Deaths report from Connor Sparrowhawk’s inquest. The diagnostic overshadowing leading to death in his case concerned his epilepsy, and the Coroner asked that Southern Health Foundation Trust, in whose (non)care Connor died, reconsider how they managed care for epileptic patients. In early January 2016, Katrina Percy, the then-CEO of Southern, wrote to the Coroner saying that they would send him a copy of their new ‘Protocol for the Safe Bathing & Showering of People with Epilepsy’, then in final-draft form, ‘as soon as it is ratified’. There is still no copy of that Protocol on the Coroner’s website, so anyone outwith Southern who might be looking for some best-practice ideas about Preventing Future Deaths from epilepsy is out of luck. Two years, mark you, after Connor’s inquest and the publication of the Mazars report caused nationwide ripples; and nearly four years after Verita produced the report that first made it officially clear that poor epilepsy care lay behind Connor’s death.

I want to finish this post by looking at how Richard’s mother was questioned on this first day, by Counsel for the publicly-funded bodies. Bear in mind that Sheila Handley, while remaining very much in her son’s life and supporting him closely, had not been formally consulted about his wellbeing for over a decade and was not included in the circulation of Richard’s health documents. Richard himself could not read these, nor relay their contents to his mother, instead relying on his caregivers to manage for him.

Mr. Hugh-Jones, counsel for the GP registrar who attended Richard on 13/11/12 started by questioning Mrs. Handley on the suspected Hirschsprung’s disease and the lack of a formal diagnosis. Tests, said Mrs. Handley, were delayed while it was felt management was adequate.
Hugh-Jones went on to ask about Richard’s verbalisation of pain. These questions actually went to capacity. Mrs. Handley steadfastly reiterated Richard’s difficulties with comprehending consequences, adding that explanations were, however, useful in securing Richard’s compliance with treatment.
Hugh-Jones asked questions about the notes from the visit to the psychiatrist on the 12th, suggesting that these showed family concern was misplaced:
“…tummy looks better…” “It says tummy looks bigger,” corrected Mrs. Handley.
He queried her recollection of events: “The carer says <the psychiatrist> didn’t touch the tummy.” Mrs. Handley remained poised and dignified. “I don’t think that’s right. My recollection is that he did,” she said.
Hugh-Jones queried Mrs. Handley’s drawing of inferences around the state of Richard’s abdomen in the week before his death. “You weren’t there on the Tuesday when Dr Tajammal saw Richard, were you?” Mrs. Handley permitted herself a touch of asperity. “To be asked to comment whether <his tummy> was static or progressing, I’m getting very confused. He was very distended on Monday and Wednesday, he didn’t lose that distension on Tuesday, if that’s what you’re suggesting? That’s not how it works.”
Mr. Hugh-Jones came back swinging on Richard’s breathing problems: “When you saw Richard on Wednesday he was breathing perfectly normally wasn’t he, so we know it’s progressive?” “Yes,” said Mrs. Handley. Counsel appeared not to process this. “We know he was suffering respiratory symptoms by Wed 16 Nov, we know it was progressive,” he said, adding, “However you might want to shy away from that.” Mrs. Handley neatly sidestepped the insinuation and landed a flush hit: “I’m not wanting to shy away from anything, I’m very much in agreement.” Hugh-Jones seemed slightly flustered by this and proceeded to get Mrs. Handley to flip back again through the bundle so he could query her concerns around Richard’s proposed discharge.
The @HandleyInquest tweets from George Julian record the exchange as follows:
HJ: Were you in the hospital on the morning that Richard declined? SH: I was not, but I am referring to texts I received from my ex-husband.
HJ: Have you had it reported by your husband that Richard had passed faeces? SH: Yes, but he was concerned Richard’s abdomen was still very distended. The junior doctor asked John whether his tummy was normally like that and John told him, no, it wasn’t.
Mr. Hugh-Jones retired from the ring.

Mrs. Handley then had a bout of verbal fencing with counsel for United Response, the housing and care provider:
UR: Would welcome your thoughts on bowel movements in 2011 and 2012. Did you notice a difference in Richard’s willingness to go to the toilet? SH: No, not at all, when he needed to go when he was at mine he was always very happy to have me in the bathroom with him.
UR: He’s been described as being able to go to the toilet independently. SH: I wouldn’t agree with that, especially for bowel movements, he wasn’t capable of cleaning himself up.
UR: Was he able to deal with the bowel movement itself but not clear up afterwards? SH: In essence yes, except in order to have a bowel movement, he needed his mind taken off what was happening so he’d relax and let go – which was the point of the games and physio.
UR: Was that something you discussed with staff at all? SH: Yes, when we had the meeting with Suzan Collins and Clara Paolantonio @unitedresponse.
UR: Was that later discussed with staff in 2012? SH: No, I had no reason to believe it needed to be.

I remembered Sara Ryan at her son’s inquest. Counsel clearly knew he was on dodgy ground insinuating that it was Sara’s, not the staff’s, job to keep Connor safe in the Unit: “I preface this is not a criticism but want to make sure what you say about it, do you accept that during Dr J’s admission of Connor and your call with the Occupational Therapist you… didn’t mention the need to observe Connor in the bath?”
Even in compressed tweet-form, Dr. Ryan’s breathtaken outrage and pain came screaming through: “Yes, but can I add it didn’t occur I’d need to raise with specialist staff? This was a unit that cost £3,500 a week to keep Connor in it!…It would have been a bit like asking a school teacher who took one of our kids on a school trip not to let them loose on a motorway.”

Sheila Handley, I thought, has definitely learned from watching Sara Ryan’s ordeals at the Connor’s inquest and at the GMC tribunal considering Connor’s psychiatrist’s fitness to practise. She’s learned not to get discombobulated by the can-you-just turn-to-page-x trick; she’s learned the value of the “Yes, but…” response; she’s learned how to contradict, politely, statements she considers inaccurate; and she’s learned how to shovel attempted slopey-shouldered offloads of responsibility, right back to where they belong.

Two things leap out at me from this. One is just how much of a nonsense the concept of a ‘non-adversarial’ inquest is. Families want answers, but public bodies want to swerve liability and manage reputation. If their hired gun chooses to take the route of blaming the person’s family, (usually via motherblame, it has to be said) the organisation doesn’t care, as long as the ploy works out for it. In consequence, family witnesses like Sheila Handley have in effect to quasi-professionalise themselves through a form of (self)-training, in order not to be annihilated by the process/ordeal.

The second is that while the organisations are busy fending off responsibility, they will have less attention to devote to improvements for similar patients who may now be at risk. Circling the wagons, not reflecting and changing. It is more than sad, it is sickening to think that the most salient ‘learning from deaths’ to come out of Connor’s drowning may be, not the lesson that Sara Ryan hoped the NHS would learn: How To Provide Good Healthcare To Learning-Disabled People And Avoid Them Dying Prematurely, not the lesson that Mr. Coroner Salter wanted Southern to learn: How Properly To Care For Patients With Epilepsy, but this lesson for other bereaved families: Learn How To Outflank A Barrister At Your Child’s Inquest.
­

Traumatised.

13 Sat Jan 2018

Posted by Kara Chrome in Uncategorized

≈ 1 Comment

Tags

A&E, Accident and Emergency, HCPs, Healthcare Professionals, kindness, NHS

After years of not darkening the door of A&E, we’ve managed to chew through chunks of that scarce NHS resource twice in a month. I seriously misjudged my step near a flight of stairs in mid-December and still have a limb in plaster. A few days into the New Year, Grenouille’s flu-ridden Papa passed out in the bathroom, bounced his head off about five different hard surfaces, and was blue-lighted in with possible C-spine injuries, in a neck-brace and on a spinal ‘scoop board’.

Both times, our local A&E staff have been superb, but the place is a nightmare. It’s a maze of cramped corridors and cubicles, with people sliding sideways past one another. Windowless, it feels oppressive even at noon, and I’ve never seen it but it’s rammed. I don’t know how crowded it was when G’s Papa was taken in, in the wee small hours; I had to stay with G after the smoothly competent paramedics had assessed P, shot him full of morphine, braced and boarded him, got him round the awkward turn on our stairs and up the steep front path. I know they managed to rustle up six competent pairs of hands to get him off the trolley and under the X-ray machine without jolting his neck and thankfully, after a period of worrying uncertainty when the initial films weren’t clear, he was given the OK. But when I was in there, at ten in the morning, it was appalling.

Areas of the department seem to be under refurbishment. I’m not sure if this is merely planned work to remedy some of the terminal shabbiness or whether they’re having to do emergency replacement of bits that have actually started fall down. Either way, there are apparently random areas sheeted off with dust-coated polythene, behind which can be seen foggy outlines of construction workers; and the doctor treating me – Dr A, young, serious, neatly-pressed shirt starting to wilt – had to push me, on a squeaky-wheeled, brakeless trolley, to a half-demolished area. Here, he brushed sawdust off a computer terminal, in order to show me my X-rays and explain what needed to be done for my broken bones. Back in the main area, en route for the plaster nurse, it was impossibly crowded. The doctor manoeuvred the trolley expertly, gently drifting it between scurrying bodies and round tight corners, without bumping anyone or anything, and parked me in a wider stretch of corridor. Around me eddied my fellow-flotsam: an elderly gentleman, slumped in striped pyjamas, whose only word, uttered dolefully at roughly thirty-second intervals, was ” ‘Ome!”; another woman with a leg injury who had brought in her knitting and her e-reader and was determinedly trying to block out her surroundings, though without much success, judging by her winces every time her neighbour foghorned his desired destination; a rather confused late-middle-aged lady who was having trouble communicating with staff. Parents cradled grizzling children and patiently repeated answers to repeated questions. In the distance, the doctor glided past at speed with another trolley, this one bearing an unconscious old lady, her scalp showing through her sparse hair, the same faded pink as the cellular blanket that covered her. The phone on the nurses’ station rang constantly, but was seldom answered. A nurse seized a water-bottle from behind the computer and gulped several swigs before flitting off. Staff coalesced briefly around the desk and rapidly dispersed again. Unlike the parked patients, they were in constant motion.

Suddenly, there was a buzz of bells and a trundle of trolleys moving from left to right, from the direction of the ambulance entrance towards the operating theatres. Half the staff rose and moved off in a body behind them, as though the trolleys were surfing before a Severn bore of blue scrubs.

The confused lady became tearful and grabbed at a nurse for reassurance, babbling an incoherent account of her troubles, symptoms and worries. “My heart… and I can’t remember which day, it’s… and then the stroke… I think I’m going to have one of my panic attacks, but the palpitations, it’s like when…” The nurse squatted in front of her, talking to her as though she were a dim and rather naughty child. “You’re hyperventilating! Stop it! Come on!” She tapped the lady’s hand. The lady breathed harder. A female doctor came over: “I’ve set up an ECG machine in the the office, I think she’ll be better in the quiet.” “Come on,” said the nurse again. “Let’s get you over there.” She stood up and put her hand under the lady’s arm. “Get off!” shouted the lady, suddenly switching to indignation. “You’ll make me fall!” The nurse rolled her eyes. “I’m just trying to help.” “I have to… the stroke, it’s walking. Take my time.” She heaved unsteadily to her feet and shuffled off unevenly, muttering, between the two younger women.

Eventually, the plaster nurse came to find me. “Sorry about the wait. We’ve had a couple of urgent cases come in so Dr. A wasn’t available – he needs to observe this.” She spun me round and set off for the workmen’s area again, acquiring Dr. A en route. He watched as the nurse moved swiftly through her task, giving him minimal explanation and no opportunity to do anything himself. I thought, fuzzily, that if this was the ‘see’ part of Dr. A’s ‘see one, do one, teach one’ training, I hoped he was a very quick study. I was glad I was his first and not his second patient. The nurse handed me a pair of crutches and helped me to transfer to a folding wheelchair that was even more decrepit than the trolley. “Can you find someone to take her back to the front desk?” she said to Dr. A. “I need to get this trolley back in circulation.” She squeaked off, leaving the door open.

“I’ll take you myself,” said Dr. A, shoogling the chair’s handles until the wonky wheels were lined up enough to move. “I haven’t seen a porter at all this morning. Still, you picked a good time to come in. Earlier, it was really busy, and it’ll get worse again later on.”

I looked out at the heaving chaos in the main area and wondered aloud how much worse ‘worse’ would be. Dr. A sounded amused. “We’re jammy just now. We’ve still got a spare operating theatre,” he said, turning down a corridor leading away from A&E, propping a door open with a crutch and deftly retrieving it as we passed through. “No-one’s bleeding uncontrollably, or having a heart attack, or trying to take a swing at a member of staff. And if you’ll kindly shift onto one of these banquettes in the foyer – if we prop your leg like this, is that comfortable? – I’ll have another seat for a patient who’s still waiting to be treated.” He smiled, tiredly, wished me well and disappeared briskly, the wheelchair wobbling in front of him.

I called Eldest to come and pick me up, and tried to imagine what it must be like after fourteen hours of too few staff, in too small a space, juggling too many patients, including bleeders, vomiters, screamers, about-to-croakers. If, as I believe, the quality of care depends on the nature of the relationship between carer and caree, how can you really care in those circumstances? If you really care, how do you cope with having to do half a job much of the time: the bare minimum with no time for relationship, or even kindness? How do you steer between the Scylla of callousness and the Charybdis of collapse? How do you keep sane, knowing you have to do it all again tomorrow?

When E was in his final year at school, one of his friends was knocked down in the road. A group of them had all been at an after-school ‘revision club’, and had stopped off at the local pizza place afterwards; it was winter, and dark, and the car came fast around a blind bend. Milo went up on the car’s bonnet and was then hurled several yards down the road when the driver stood on the brakes. E, who had completed St. John Ambulance emergency first-aid training, did all the right things. He immediately ‘set a perimeter’, flagging down a couple of other cars and getting them to park with their hazard lights on so that Milo – and anybody helping him – was protected from the traffic flow. He stopped a well-meaning passer-by from trying to move Milo. He delegated calling the ambulance to someone else while he checked Milo’s ABC, kept him covered, kept him talking. When the ambulance arrived, E was able to give the paramedics a comprehensive account of the number, nature and possible severity of Milo’s injuries. His other friends agreed to wait for the police; E went with Milo in the ambulance. He called me from there to explain why he was going to be late, and to ask me to phone Milo’s parents and tell them which hospital to go to. No answer on the landline. E didn’t have their mobile numbers, and Milo’s phone had got smashed in the accident. I called E back and told him I’d keep trying. He said that Milo needed to go into theatre immediately, could I speak to one of the doctors to explain. E stayed with Milo right up until he was under anaesthesia, and then he went down to the main entrance so that when Milo’s parents finally arrived, they didn’t have to ask anyone where their son was; he could take them straight to the right place. The surgeons were still operating. E sat with Mr. and Mrs. Milo for another two hours. Milo was still in theatre. At 11.30, E got a cab home.

It was a long night. Although E’s training had clicked in perfectly, and I was able to tell him, repeatedly, with absolute confidence, that what he had done had given Milo the best possible chance of surviving (given that he couldn’t make the car un-hit him), E knew that the injuries Milo had sustained were life-threatening. He was in shock, shaking and unable to sleep. I called the hospital. No information. At some point after midnight, Milo was transferred to the regional trauma centre. They were still more reluctant to say anything, even that he was a patient, but I managed to find out at 2 am that he was undergoing further surgery and was not expected to be out until 6 am. At 6.30, Milo’s father called me to say that Milo had just been moved to recovery. As E had suspected, there had been serious internal injuries and bleeding to sort out, but Milo was expected to make a full recovery*. E fell asleep as though poleaxed; and I got Grenouille up and into the taxi, phoned E’s school to let them know why he wouldn’t be in that day, and retired for a kip myself.

It wasn’t the end of E’s difficulties, though. He had nightmares and trouble sleeping for several days and I had to coax him to keep telling his story over until he had made his peace with it. And so I am troubled about what we are asking of our A&E professionals at present.

Now, I know that there is a huge difference between a seventeen-year-old having to deal with an accident to a friend, and a healthcare professional dealing with patients as part of their job. The HCP has far more training, more experience, more detachment, more formalised support. But they also have more incidents, a closer view of the consequences of injuries, more people to deal with every day, more responsibility. As long as E hadn’t actively made things worse for Milo, he would have done well enough; that he did considerably better than that was just icing. A health professional’s first duty may be to do no harm, but they have to go a lot further, every working day, with every patient. And then they have to complete the paperwork. No chance for a proper debrief, let alone an extended one. Just eat, sleep and repeat.

Expecting them to do so, without breaks, on shifts that are nearly twice as long as the typical working day, in emergency departments that are under-staffed and over-crowded because the entire health system is deliberately underfunded for politico-ideological reasons, is diabolical.

*****

*Milo returned to school, in a jangle of supportive ironmongery, about 6 weeks later; got top grades in his A2s and, fully recovered as predicted, is currently doing very well indeed at university.

The Irresponsible Clinician.

09 Wed Aug 2017

Posted by Kara Chrome in Uncategorized

≈ 6 Comments

Tags

#justiceforLB, Connor Sparrowhawk, GMC, High Ordeals, JusticeforLB_GMC, learning disability, medication, mothers, NHS, preventable deaths, Sloven Health, true stories

Revolting reminder yesterday of the complete lack of empathy and human kindness manifested by LB’s so-called Responsible Clinician, via her brief, at his inquest.

The psychiatrist, Valerie Murphy, is up in front of the GMC’s fitness-to-practice Panel this week and next.  Confusingly, the GMC has decided to refer to LB neither by his name, Connor Sparrowhawk, nor his nickname of LB, but as ‘Patient A’.  There’s probably a whole other blogpost in there about the effect and intentions of this depersonalisation, but right now I am busy with other things.

GMC Murphy notification

The full list of allegations runs to four pages (thanks and acknowledgement to George Julian for posting these).

GMC Murphy 2

GMC Murphy 3

GMC Murphy 4

On a first count, there are 55 separate allegations there, of which only the first does not allege misconduct.  But the effect of 7 (i) and 7(ii a-c) is to multiply the accusations in 7(a)-7(f).  Item 7 contains 24 separate allegations of misconduct, giving a grand total of 68 allegations of individual instances of Murphy’s care of LB falling below adequate standards.

Of those 68 allegations, Murphy has admitted 30, which are accordingly found proven, but contests the remaining 38.  Looking at the matters admitted to, they are either procedural failings (not arranging a best interests meeting, inadequate record-keeping) or related to Connor’s epilepsy.  The ones she is contesting are the mostly psychiatry-related ones: assessment, diagnosis, treatment and medication, including the whole of that multiplex Section 7.

The inference I draw from this is that she intends to assert that her treatment of Connor as a psychiatric patient was unexceptionable, that its poor documentation was down to faults in the system beyond her reasonable control, and that his physical health was not her responsibility.

At Connor’s inquest, she was already citing system chaos, for example on the morning of Day 6:

VM: I can’t remember what was seen or discussed at that meeting, but I remember it as quite chaotic..

11.05  AS asks who those minutes wld be sent to?  VM: Wouldn’t know.  AS: Do minutes of CTM meetings find themselves in patient’s medical records?  VM: Yes, they would.  AS: Would members of the team have a duty to ensure those records were accurate as medical professionals?  VM: It depends, we were struggling w RiO, the Chair would read and confirm them.  

(From @LBInquest tweets)

Now, I’m all for Southern Health management being made to shoulder their share of responsibility.  It was painfully obvious at Connor’s inquest, that the detached and indifferent nature of Southern Health’s oversight of Oxford services was itself probably well over the line of neglectful, leaving staff demoralised and demotivated.  But Southern’s flaws, however egregious, do not excuse a clinician failing in her direct duty to a patient.

The failure properly to treat Connor’s epilepsy is catastrophic on its own.  Psychiatrists are medical doctors, and all medical doctors are required first to train as generalists before they specialise.  Moreover, Murphy is a specialist in the psychiatry of learning-disabled people.  Given that epilepsy is commoner among learning-disabled people than it is in the general population, she should have been well aware of epilepsy in general. And, given the information that came into STATT with Connor and the subsequent additions to that information offered by his family, she should have focussed on epilepsy as a difficulty of Connor’s in particular.  Instead, she dismissed it, and continued to do so.

On Day 5 of LB’s inquest in 2015, she insisted that “there was no evidence of seizure activity during LB’s admission”, because “two instances that were explored as potential seizures….were ruled out”.  This was in spite of clear and urgent warnings, both oral and written from LB’s mother that she had seen signs of seizure activity – drowsiness and a bitten tongue – while LB was in STATT.  Now, it seems, Dr. Murphy has folded on the presence of epilepsy, in the face of the inquest findings, although she apparently continues to claim that its management was not her responsibility. Oddly, she also still appears to contend that she obtained a history of Connor’s epilepsy that included whether seizures made him tired and need to sleep. If she had done so, why did she then ignore that he was drowsy at unlikely moments?

My general feeling for the other contested allegations is that these are areas where it is possible for Murphy to argue that she did the things she should have done; it is merely her recording of them that is defective.  Slap-on-the-wrist stuff, not striking-off material.  Whether those arguments will seem plausible, is likely to be largely down to the credibility of Murphy herself.  She needs to present herself as competent, knowledgeable  and benevolent, but overworked and harassed.

Hence, no doubt, the utterly disgusting hounding of Connor’s mother in front of the Tribunal yesterday.  The interactions of Richard Partridge, Murphy’s barrister, with Dr. Ryan, were not so much a cross-examination as an attempted crucifixion.  He did everything he could to portray Dr. Ryan as incompetent, ignorant, uncaring, shiftless and vindictive, in order to improve his client’s chances of appearing the reverse.  It was exactly the same strategy as the one used at Connor’s inquest by Murphy’s then-counsel, Alan Jenkins.  It failed then and it failed this time, for the same reasons as before.  Firstly, Dr. Ryan is a person whom it is difficult to impugn: she has always been shrewd, informed, capable, industrious and warm; and now she is showing tremendous courage in the face of loss and grief that would overwhelm most people.  I don’t think a Panel with even a modicum of intelligence is going to fail to notice the discrepancy.  The inquest jury certainly were not fooled.  Secondly, and far more importantly,  Dr. Ryan’s personal characteristics are completely irrelevant to the question of the adequacy of Murphy’s care of Connor.  Whether Murphy found Dr. Ryan’s outspokenness uncongenial, difficult or even frankly insufferable, that was still no excuse to ignore the information she contributed about Murphy’s patient, Connor.

That both Murphy’s briefs have taken this line of personal attacks upon the patient’s mother, suggests to me that the initial steer in that direction comes from Murphy herself.  It seems like a risky strategy.  It’s going to be hard for her to come across as competent when she has so seriously misjudged Dr. Ryan as well as Connor himself; or as benevolent when she has allowed her barristers to stick so many unwarranted knives of sneer and innuendo into a grieving mother, and then twist them.

The nadir yesterday came when Partridge read out Dr. Ryan’s impression of Murphy as ‘dismissive, arrogant and distant’ and told her it was ‘very upsetting for Dr. Murphy to hear any patient’s relative describe her as such’.  Dr. Ryan asked for a recess at that point:

” ‘Dr Murphy is upset by your evidence.’ Dr Murphy is upset. Upset. ‘Can I have a break?’ I was taken to a room alone. To howl…“

Nevertheless, she returned to display the intellectual rigour that #JusticeforLB’ers have come to know and admire.   Pursuing an irrelevant line of questioning on the blog, Partridge tried leading his witness: ‘The tenor of the blog was critical, in a neutral term’.

“I don’t think ‘critical’ is a neutral term,” rejoined Dr. Ryan.  “The blog was an honest account of our experience.”

Partridge continued in a similar dismissive vein, referring to ‘the tongue-biting incident’.  When told by Dr. Ryan that it was not an ‘incident’ but a seizure, he went DefCon1 on the patronisation:  ‘I know that you feel it was a seizure.’

Dr. Ryan did not let him get away with that, either. “It was a seizure.”

I really don’t know what Murphy hopes to gain by permitting or requiring her counsel to act thus.  If anything could confirm the accuracy of Dr. Ryan’s negative summation of Murphy’s character, it surely has to be such a display of tone-deaf, compassionless persecution.  To  ‘dismissive, arrogant and distant’, most observers would probably add, ‘egocentric, devoid of empathy, disrespectful and cruel’; in short, thoroughly unsuited to being a consultant psychiatrist.

An irresponsible clinician.

Common Trials: The Coordination Conundrum.

26 Fri May 2017

Posted by Kara Chrome in Uncategorized

≈ Leave a comment

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.

12 Fri May 2017

Posted by Kara Chrome in Uncategorized

≈ 1 Comment

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.

14 Tue Jun 2016

Posted by Kara Chrome in Uncategorized

≈ Leave a comment

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.

04 Wed May 2016

Posted by Kara Chrome in Uncategorized

≈ Leave a comment

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 ansafone response.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.

19 Tue Apr 2016

Posted by Kara Chrome in Uncategorized

≈ Leave a comment

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.

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