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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 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 .
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.