Taking Liberties.

Tags

adult LD services, care in the community, Deprivation of Liberty, DoLS, independent living, Mental Capacity Act

I can’t pretend to be a Deprivation of Liberty Safeguards (DoLS) aficionada. But a little research reading reveals that the current ‘acid test’, in England and Wales, for assaying whether a person is subject to a Deprivation of Liberty is: if the person is ‘subject to continuous supervision and control and not free to leave’, she or he is deprived of her or his liberty and therefore needs the Safeguards applied, to ensure that the Deprivation and any restrictions or restraints used to enforce it are in the person’s Best Interests.

If a person lives in a care home or hospital, the Local Authority is responsible for checking that the Deprivation is in the person’s Best Interests and authorising it accordingly (a ‘Standard Authorisation’), but if they live in some other place – supported living, Shared Lives houses, children’s homes and residential schools, or even their own home – and are ‘subject to continuous supervision and control and not free to leave’, then any Deprivation of Liberty (and associated restrictions or restraints) has to be scrutinised and authorised by the Court of Protection.

Deprivation of Liberty was one of the lynchpin issues in Hillingdon v Neary.  Steven Neary was placed in an ATU; he was under (theoretically) continuous supervision and control and he was not free to leave the Unit; on the occasions when he managed in practice to elude the ‘supervision’ and escape the control, he was sought and brought back by main force.  Besides the physical restriction of being kept behind a (mostly) locked door and not being allowed to pursue his normal activities, Steven was also subjected to pharmaceutical restraint in the form of high doses of Risperidone.

Since he has been living in his own home, with a round-the-clock support team consisting of his father, Mark, plus a number of paid support workers, Steven has been able to direct his own life.  He decides where he wants to go and when; if he expresses a wish to do something out of routine, his support team facilitates that, whether it’s an unscheduled trip to the shops or dropping in on a family member.  If he wants some time to himself, his supporter(s) will go into a different part of the house, respecting his need for space and privacy while still being available should he need their presence. He is also no longer subject to pharmaceutical restraint, having been weaned off the Risperidone because of the terrible damage it was causing to his physical health.

So while Steven is still subject to continuous supervision, it is questionable whether he is, any longer, subjected to ‘control’.  He is the one in control, his decision-making is supported in accordance with the Mental Capacity Act provisions and his right to make unwise decisions is respected.  He is also arguably ‘free to leave’, even though he would still, in leaving, be subject to continuous supervision, as his support person would go with him to ensure his safety and that of people he may encounter outside the house.

However, the Local Authority has a duty to assess people who ‘may be’ deprived of their liberty, so Steven’s new Social Worker is coming round to do a ‘Community DoL’ assessment on Thursday.

I can’t see that Steven is being deprived of his liberty, but I think there is someone in Steven’s setup who, in practical effect, is being deprived of liberty.  Not, as I say, Steven – he is supervised, but he has a measure of control, and if he wishes to leave, his team enables, rather than preventing, his leaving.  Not the support workers, who have freely entered into a contract to provide services to Steven at certain times in return for remuneration, and who are at liberty to leave and seek alternative work should they so choose.

No, the person who is deprived of freedom is Steven’s father, Mark.  How does officialdom manage this?  By exploiting the fact that Mark loves Steven, while denying Mark’s family relationship to Steven: Mark is classified officially as Steven’s ‘live-in carer’.

When our neighbour across the road developed Alzheimer’s, her nearest relatives – a nephew and niece-in-law – organised live-in-carers for her.  They were called ‘Caring Companions’; they came via a regulated provider; they did two-week turn-about stints with a mandatory two hours off in the afternoon of every day; they were generously paid; and they got the other two weeks a month entirely to themselves, with absolutely no further duties.

Mark, on the other hand, has to be available to Steven at all times when the paid support workers are not present.  He can’t nip out when the notion takes him, if that would leave Steven unattended. There is no provision for short-notice respite to cover illness, for a regular daily break, or even for a block of sleep once in every twenty-four hours.  In addition, Mark is obliged to do a great deal of real administrative work – 115 hours last year, or more than 3 full-time working weeks in 37.5 hours-per-week Local Authority terms – and carry the responsibility of being an employer, all for a financial reward of £0.  He can’t choose whether to support Steven without jeopardising Steven’s liberty and entire way of life.  His liberty to choose when he will support Steven is also curtailed by a social care budget that won’t stretch to the actual costs of providing Steven with appropriate, least restrictive care.

In my view, Mark is, in practical terms, deprived of liberty.  He’s a prisoner of conscience.

On World Social Work Day, that’s a discomfiting thought.

The Palace and the Pigsty.

Tags

adult LD services, care in the community, independent living, Local Authorities, true stories

E goes up as an undergraduate in a couple of weeks.  He didn’t manage to get a place in Hall, and the prospect of him spending his first year in digs was somewhat daunting.  I had visions of an insanitary Young Ones-style flat, but student accommodation these days is considerably more recherché than it used to be.  A trawl of student lettings websites came up with some truly palatial purpose-built apartments.

Even the ‘shared houses’ have gone way, way up in the world:

  

Very nice.  Lucky lads and lasses, these privileged ones.  Rob Mitchell, Calderdale’s Principal Social Worker (of the Year 2015, no less), taking his own son up for the first time, was also mulling over chance, privilege and good fortune:

1/2 Taking my son to Uni. Reflecting on what it must be like for those whose children rely on social work & social care.

— Rob Mitchell (@RobMitch92) September 10, 2016

2/2 How do you trust the state to care for the most cherished & loved person in your life, when they narrative is continued failure?

— Rob Mitchell (@RobMitch92) September 10, 2016

Sara Ryan, who has more right than most to an opinion, replied, “You don’t. You just hope with all your heart.”

Mark Neary’s son, Steven, is also in search of somewhere new to live, as his ‘secure temporary’ housing is due to be demolished early next year for redevelopment.  In Steven’s case, though, the search is complicated by his autism, which means that his potential choices are restricted to social housing.

Mark has been bidding for every available social housing property for which Steven might be eligible (very few, as it turned out) and was getting close to despairing of finding something suitable before Demolition Day, when he was offered a direct allocation of a flat for Steven in “an exclusive and stylish new collection of studio, one and two bedroom apartments set within the leafy suburb of Cowley, Uxbridge, surrounded by picturesque parks and plenty of idyllic countryside walks … the perfect combination of peaceful countryside living within a town environment.”

A walk past the place and a peer-through-the-ground-floor-windows inspection confirmed that it was nearly ready for occupation, with carpets and white goods already installed.  The mock-ups of the flat interiors suggested that these affordable flats, like the student ones, could be positively luxurious.  Mark was overjoyed to accept the offer.

So maybe Rob is too cynical?  People with autism, like their student contemporaries, get offered modernity and comfort suited to their needs?

The keys were due to be handed over to the Housing Association five weeks later.  Five days before that, Mark found out – quite by chance – that there was a hitch.  Nobody could quite say what, though later rumour suggested major problems with the electrical installation.  But the upshot was that to be sure of getting Steven a new place to live before he became homeless, Mark had to go back to bidding for other, non-direct-allocation housing.

Steven was offered first refusal on another flat – except he wasn’t, because Mark had to make the decision for him before there was time for Steven to see the place.  It wasn’t right for Steven, and with much trepidation, Mark turned it down.

The next flat was the right size and in the right place, but, said the Housing Manager, a bit of a mess.  That proved to be an understatement.  Mark considered it a ‘pigsty’; I think RSPCA officers might have condemned it as unfit even for pigs.

Mark is swearing off hoping.  Hope, the one thing left in Pandora’s box, and the only thing that wasn’t a curse.  Yet in the face of inevitable let-down, hope can be a curse, one that dooms a person to make poor decisions, or renders them unable to call out wrongs, or causes irretrievable delay as hope prevents action.  And don’t think you can escape by abandoning  hope: the sneaky blighter will turn and rend you with claws of guilt for giving up.

Looking at pictures of the flat, you can see exactly why Mark renounced hope, even before Hillingdon Council declared that Steven was expected to move in immediately; and refused to let Mark have time, permission or a rent-holiday to do the flat up to suit Steven’s needs and tastes.

 And no, I don’t think Rob Mitchell is taking too sour a view of matters social care.  If anything, he’s understating the case.

Here Come The Girls.

Tags

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

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

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

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

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

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

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

*****

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Health and Capacity.

Tags

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

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

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

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

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

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

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

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

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

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

Dr. Crapshite Revisited.

Tags

adult LD services, appropriate vocabulary, care in the community, kindness, learning disability, medication, voices of disability

I must be spending far too much of my time reading off electronic devices these days, because I was thumbing through my copy of There’s Always Something or Other With Mr. Neary, and when I had read the 1 September 2012 entry, my first impulse was to start jabbing the page with a forefinger to add a comment.  Oops.

One of my more eccentric computing tutors used to say that if paper had been invented after the silicon chip, everybody would think it was the bees’ knees.  “You don’t need batteries!  You can build your own basic matrix from plant fibres!  You can write to it with a carbon stick!  And the refresh time is up to a thousand years!”  As this was well before the invention of the tablet computer, he didn’t add, “But however hard you poke at the side of a book, you won’t find a backlight for reading under the bedclothes!”  I have to remember that for myself.

Anyway, the piece in question is about Steven Neary’s twice-a-year visits to the psychiatrist.  The trick-cyclist seems to be a rather unpleasant fellow; when Steven proffers his hand, as he has learned it is polite to do, the psychiatrist refuses to shake it.  He then avidly notes the distress that this can cause Steven and blames Steven’s resulting behaviour on his father and support workers for ‘failing to set boundaries’.

If Mr. Neary senior remonstrates with him, the psychiatrist  goes into Sly Game Playing Mode:  “It looks like the conflict increases your anxiety, Mr. Neary”.

I want to ask Dr. S., “That being so, why are you provoking conflict?  What are you getting out of making Steven miserably disoriented and his father stressed?  It doesn’t seem a very professional way to act, more a sociopathic/sadistic one.  Quite apart from professional considerations, to refuse to co-operate in a conventional exchange of courtesies is simple oikish bad manners.  You’re being plain rude.”

Steven’s father once tried to let Steven down gently by suggesting that Dr. S. had a sore place on his hand, but it didn’t help, as Steven then wanted to see the scab.  I have a fantasy in my head of Mr. Neary telling Steven the truth, and reminding him in the consulting room: “Dr. S. doesn’t shake hands, remember, Steve?  Dr. S. doesn’t shake hands because…?”

“Because he’s an arsehole, Dad.”

An Outbreak of Sanity.

Tags

care in the community, Down syndrome, LB Bill

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

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

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

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

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

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

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Watch news video

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Vulnerability, vengeance and vileness.

Tags

#justiceforLB, #justiceforNico, care in the community, High Ordeals, kindness, preventable deaths, true stories

After his kidney failure diagnosis, Richard never went back to Rigg.  Instead he went home… except for the three-times-a-week, eight-hour dialysis sessions at the Infirmary.

His diet, already carbohydrate-controlled because of his diabetes, had to incorporate a whole new set of restrictions, with limitations on protein and liquid, and reductions in salt, potassium and phosphates.  The hospital dietician gave him booklets specifying a suitable diet, but most of the recommended meal plans consisted of foods he either didn’t much care for or actively disliked.  He sent me the lists of restrictions, and I worked out ways to modify dishes he liked to eat, so as to keep him within his mineral and fluid limits, while providing enough of the right kinds of carbohydrate.  He was assigned home helps, whose job was to come in daily and cook for him as well as doing the cleaning; it was vital to provide suitable recipes for them to use.

The thrice-weekly haemodialysis was not only onerous but tiring.  After a while, the Infirmary offered an alternative therapy: continuous ambulatory peritoneal dialysis or CAPD.  In younger patients like himself, Richard was told, this method of dialysis often gave better results than haemodialysis and could help stave off the need for a kidney transplant.

Being set up on CAPD entailed an operation to fit catheter through Richard’s abdominal wall, with internal tubing in his abdominal cavity.  Dialysis fluid was poured in through the catheter, left for a few hours to absorb waste through the walls of the blood-vessels supplying his guts, and then drained out through the same catheter before fresh solution was added.  Because of his sight problems, Richard could not manage the dialysis solution changes or the catheter care by himself, so nurses from the District team came in three times a day to help.

Changing dialysis solution is not a quick procedure.  It took about 20 minutes to drain the used solution and another ten to infuse a fresh bagful, and it was vital that the whole procedure be carried out with scrupulous attention to hygiene, to keep the catheter and cap sterile.  Dialysis fluid contains quite a lot of glucose; any germs that got down the catheter would find themselves in bug heaven – with food, warmth, moisture and every opportunity for multiplying wildly and causing life-threatening illness.

It was not long before Richard’s CAPD treatment began causing him problems.  The District Nurses were, almost without exception, kind, efficient and meticulous.  However, they were all under time-pressure, and one worried him considerably.  “I swear, she’s not cleaning down properly between emptying the used fluid and infusing the new bag”, he told me.  “I know I can’t see what she’s doing, but there’s nothing wrong with my ears – or my ability to count time – and I know she’s not doing all the steps that the others do.”

He tried speaking to her about the steps that she was going through, but she took the huff at having her way of working questioned, and a couple of weeks afterwards, the phone call sounded not just worried, but frightened.  “That clarty besom was here again, and she’s still bloody furious with me.  She’s been downright rude to me today – speaking to me like I’m a naughty child, and I’m absolutely sure she didn’t wash her hands before she got started.  She didn’t clean round the catheter thoroughly, either.  I think she’s doing it deliberately, to pay me back for calling her out.  And she was really rough – she was pulling at the tube.  My belly hurts.”

I encouraged him to ask for her to be taken off his team, but it was too late.  A few days later, the drained fluid was cloudy and foul, Richard had a high temperature, and he had to be readmitted to hospital, where he was found to be suffering from MRSA peritonitis.  Once antibiotics had seen off the infection, the catheter had to be removed, and that was the end of his CAPD.

Up until this point, Richard’s haemodialysis had been carried out via a neck line, but now that he was going to be permanently on haemodialysis, he was told he would need another operation to create an arterio-venous fistula in his arm.  The procedure would involve connecting an artery directly to a vein.  In the weeks following the operation, the increased blood flow and higher arterial pressure would make the walls of the vein dilate and thicken so that it could be used for repeated, frequent needle insertions without collapsing.

For months, Richard refused the procedure.  The prospect of subjecting himself to further anaesthesia scared him.  He was now experiencing chest pains and breathlessness that were put down to diabetes-induced cardiovascular problems  and he did not want to die on an operating table.  Eventually, however, he got to the point where continuing with the neck line was becoming less and less tenable, and he agreed to the fistula surgery.

As usual, he called me the day before he was due for admission.  Although he was still worried about the anaesthesia, he was beginning to plan for the extra freedom that the fistula could offer.  It would be easier to access dialysis away from home, so he might be able to visit family again – something he had not been able to do for over eighteen months.  If he came to visit his sister in London, would I come up to Town to see him, as I had done when he visited before?

We had ourselves a lovely time planning what we might do.  His sister lived not far from a particularly beautiful park; if it were good weather – and there was every chance of pleasant weather in August or September – it would be the perfect place to go.  Richard had begun experimenting with photography, taking close-ups of natural objects and enlarging the resulting pictures to A3 size so that he could pick out details.  He knew from previous visits that the park had some trees with interestingly gnarled bark that would make excellent subjects…

Four days later, I received a call from his stepmother.  Richard had, as usual, been admitted to the Infirmary a couple of days in advance of his planned theatre date, so that the hospital could be sure that his diabetes and dialysis were all stabilised prior to surgery.  On the day before he was due the operation, his consultant had come to see him on the ward round.  Richard had been in fine form, joking with the surgeon, teasing the medical students, and flirting with his nurse.  According to her colleagues, the nurse had returned to the central station in a high state of giggle to confide some of Richard’s more outrageous sallies, before setting off again to take him for his dialysis.  When she got back to his bed after five minutes away, she had found him still sitting propped against his pillows; but he was dead.  She was so shocked that the ward sister had had to send her home for the rest of the day.

Subsequently, the autopsy found that Richard’s heart problems and chest pains had not been due to diabetic vascular disease, but to pericarditis – an inflammation of the membrane that surrounds the heart – which had led to a build-up of fluid around his heart.  The pressure of the fluid had finally simply stopped his heart from beating.  And the underlying cause of the inflammation was infection by MRSA, the same strain of MRSA as had caused his peritonitis.  The pathologist thought it likely that the bug had been lingering ever since the original episode, had somehow crossed the diaphragm and found itself a nice safe hiding-place in Richard’s pericardium.

Instead of having a day out in the park, a two-year-old Eldest and I went to the funeral, on a summer day that blazed as bright as Richard’s hair under a sky no bluer than his eyes.  People had come from all over; schoolfriends from Richard’s home area, family from London and the Home Counties, a coachload of friends and ex-colleagues from Scotland.  I travelled by train and met up at the station with University friends coming from the other direction.

The curtains did not close around the coffin at the crematorium. As the congregation filed quietly outside, Richard’s father stood with his hands on the polished wood and his head on his hands.  The bright blue eyes that Richard had inherited were drenched with tears for his son, while his remaining children hugged each other and wept also.

I did not think about the ‘clarty besom’ at the time, but I have since wondered whether seeing that scene would have caused her any twinges of conscience about her interactions with Richard, or whether she would simply have shrugged.  I suspect the shrug to have been more likely, on the basis a person prone to a twinging conscience probably wouldn’t react with anger and vengefulness towards a patient who was frightened and in need of reassurance.  And a person who could feel true compassion for a bereaved family would be unlikely to behave vilely towards a vulnerable person, however annoying they might find them.

Blowing Bubbles

Tags

#justiceforLB, appropriate vocabulary, care in the community, independent living, institutions, voices of disability, voluntary organisations

Have needed to be quiet this week because I gave myself something of a fright last week with where I ended up on my ‘Justice for LB’ post.  Having floated the idea of some sort of post-education IPSEA-type website – without, I regret to say, having done enough thinking-through – I now feel it’s incumbent on me to follow it up.  However, like Christopher Robin’s parent’s grandfather’s sailor, I’m more than a bit stumped as to where to begin.

Starting from what I know seems the only possibility, and fragments of database design have been rolling around my brain, but I realise that’s putting the cart before the horse.  I’d need to do a big listening project before I could get anywhere near having a reasonable working template of the overall design of what’s needed, much less start putting the detail in.  Perhaps putting some design ideas down on paper – even if it’s only for someone else to shred as inappropriate or unworkable – might be a possibility.  If nothing else, it might let me brain-dump out ideas that are likely to be more of a hindrance than a help, and which, at the moment, are making me feel that my best option is a precipitate retreat into the deepest, most inaccessible foxhole I can find, before I can be accused of going on in Alan B’stard style: “… if <someone> is needed to save Britain, then I am humbly… HUMBLY… prepared to put myself forward.”

The New Statesman, of course, had in spades what is needed from a true leader.  “Self-confidence” says a (probably confidently self-styled) business guru, “is the fundamental basis from which leadership grows.”  So a leader among leaders will be supremely self-confident, right?  Too right.

Hear ye the the words of the Lord – or at any rate the good knight – Sir Stephen Bubb, Chief Executive of the Association of Chief Executives of Voluntary Organisations, whose blog is part of the national Blog archive at the British Library, whose provider members in learning disability are top, and who hath, moreover, a Plan (Capitalised but with no capital – that will have to come from social funding).  Hear ye the words of the Plan, which shall be callèd ‘Bubb’s Challenge’ before the face of all peoples, which hath been inscribed for time and eternity, not on mere tablets of stone, but on the back of a breakfast.  For lo, the Joint Improvement Programme of Winterbourne hath been utterly overthrown, and its deadlines are as lines dead in the water, (despite having been missed and/or overshot) and there hath been weeping, and wailing, and gnashing of teeth.  Yet verily, the nations may be comforted, saith the Bubb, for his Plan is entirely doable and hath been accepted by person or persons unspecified. And yea, buildings will be invested in and ten year contracts commissioned and <needle-screech across recording of celestial music>.

Seriously, go and read it for yourself.  It’s quite eye-poppingly, stomach-churningly un-self-aware, unaware of the situation of the people unto whom it is proposed that the Plan (as writ on the Holy Bacon Rasher) will be done, and equally unaware of the previous failures of precisely the solutions the Plan appears to be proposing.  Read the comments, and weep.

At one point, the Almighty Bubb pronounces on former attempts to ‘solve’ the learning disability ‘problem’ “… in the 80s when it was determined that all mental health asylums be closed and people cared for in the community. A patchy programme but one everyone now knows was exactly right.”  Exactly right?  Exactly right?  It was the right idea, but I have a fistful of as-yet-unpublished Schoolroom Centre stories that say the programme in its patchiness was light-years from exactly right.   Its rightness extended no further than my great-grandmother’s dictum that ‘patch upon patch is better’n holes’.  If it had been exactly right, we wouldn’t now have over 3000 people incarcerated in ATUs.  It was shabby, penny-pinching, secondhand and second-rate.  ‘Patchy’ barely covers it.

After a thorough blasting from people who actually know what they are talking about, His Bubbliness came clean and admitted that far from having a Plan, he and his angelic fellow-chiefs ‘are at the early stages of scoping the remit of the steering group’.  Which sounds less like coming clean than an attempt to soft-soap.

The Americans have a delightfully vulgar phrase which means ‘to use flattering or high-flown language in an attempt to deceive’: blowing smoke up somebody’s ass.  In the Plan’s case, there seems to have been something similar going on, but with bubbles.  Or Bubbles.  Alas, I fear this bubble was pricked before it was fully blown.  And so, good night, good knight.

For bubble-pricking and otherwise cutting down to size, another guru-ish website, Businessballs, recommends asking:

• ‘What is your evidence (for what you have said or claimed)?’
• ‘Whom have you consulted about this?’
• ‘How did you go about looking for alternative solutions?’
• ‘How have you measured (whatever you say is a problem)?’
• ‘How will you measure the true effectiveness of your solution if you implement it?’
• ‘What can you say about different solutions that have worked in other situations?’

I shall go and put questions to myself and others until I’ve come up with some reasonable answers about the website.  Please feel free to pitch in any that you think I ought to be considering.  Thank you.

 

 

 

 

Eleanor and the assessment of competence.

Tags

#107days, assessment, care in the community, independent living, schoolroom centre stories, true stories

Eleanor was a tall, sturdy-boned but sparely-covered lady, with dark-grey bobbed hair, who had lived in the residential hostel for a number of years.  She was a gentle, easy-going, happy personality, and although she had a tendency to anxiety around the unfamiliar, was always game to try new things.  When I found a sewing-machine at the back of a cupboard, Eleanor had been one of the first to sign up to do a little basic dressmaking, in spite of the mild cerebral palsy that affected her hands and speech.  She learned to pin, cut and tack the patterns, and even, after repeated coaching and much reassurance, got enough confidence to attempt some straight seams under supervision, very slowly and cautiously.  However, it took a very long time for new things to ‘stick’ with Eleanor.  To help her move items from her short-term into her long-term memory so that she could do them unprompted was a near-Sisyphean task.  Indeed, even once a task seemed mastered, she could lose her ability to perform it if she did not keep practising, so endless, patient repetition was the order of the day.

Eleanor regularly spent weekends visiting or entertaining the families of her brothers and sister and liked to bake on Friday mornings (often her favourite sponge sandwich cake with raspberry jam) as her contribution to these occasions.  The sponge sandwich was one recipe that she could do start to finish unaided; on other popular items she needed support – for example with reminders of the movements needed for ‘rubbing-in’ of fat to flour, when making scones.  Friday afternoons were for having her hair washed and set in preparation for these family gatherings.  On Monday, she would tell us all about who had visited, or where she had gone, and took great pride in there never being a crumb left over from her baking.

With a firm base of routines, Eleanor led a full and happy life.  I expect it was her apparent flexibility and competence that made her a candidate for being moved to more independent living, as the third person in June and Agnes’ flat.  I won’t pretend that the staff at the Centre thought this would be a good thing for Eleanor – or for June and Agnes, come to that.  We knew how much Eleanor relied on a scaffolding built from absolutely reliable routines and gentle, repeated prompting with non-routine things.  We didn’t think it was fair to ask June and Agnes to supply this scaffolding for Eleanor, and we didn’t think it was fair to expect Eleanor to do well without it.  So when we heard that an independent assessor would be coming to test Eleanor’s ability to look after herself, and to check that she had enough everyday knowledge to manage daily living, we were privately relieved.  It seemed to us that anybody who asked even simple, relevant questions – How much money do you expect to put aside each week for food shopping?  For gas and electric?  What other things will you need to budget for?  If something costs two pounds and you hand over a five pound note, how much change would you expect to get?  How long do potatoes take to cook?  What number would you telephone if someone in the flat were ill?  Tell me about your medicines and how you know whether you’ve taken them properly? – would soon realise that Eleanor would need more support than she would get in the flat.

The assessor was coming to see Eleanor in the evening, at the hostel.  The following day, Eleanor was very excited.  She had been given the go-ahead to move.  There was a moment of stunned silence.  Then:

“Tell us about what happened?” said the manageress, breathlessly.

Eleanor said that the assessor had met her in the common-room of the hostel.  He had asked her a number of questions about current affairs – what year it was, and who was the Prime Minister.  He had talked to some of the hostel staff.  And he had asked her to make a cup of instant coffee and some cheese-on-toast.  She had succeeded, and that meant she was capable of living independently and managing all her affairs for herself.

 

Days, Dudes, Doom and Drops of Brilliance.

Tags

#107days, care in the community, kindness, LB's Justice Quilt, Prader-Willi syndrome, true stories

Another day, another LD dude in difficulties.

Today it’s Dude David, who has Prader-Willi Syndrome.

PWS is caused by the loss, or failure to function, of a tiny region of Chromosome 15, so it is sometimes known as a ‘microdeletion disorder’.  The relevant genetic region may be minuscule, but the effects of it being unable to work are HUGE, literally and metaphorically.  The missing or non-working genes code for controlling the production of a hormone called ghrelin, which tells people when their stomachs are empty and they need to eat.  People with PWS vastly overproduce ghrelin.  By a miserable twist of ironic metabolic fate, they are also unusually sensitive to another ‘hungry hormone’, insulin, and are resistant to the ‘had enough’ hormone, leptin.  They never feel full and are always hungry.  Really, really hungry.  Stomach-gnawingly, raid-the-fridge, where’s-my-dinner hungry, even if they have just eaten a large meal.

Given the chance, people with PWS can literally eat themselves to death.  Some become so enormously obese that their health collapses and their body gives up.  Others who have got unexpected access to food have eaten so much that their stomachs have burst, and they have died of organ trauma and internal bleeding.  Given money, they will buy food in massively excessive quantities and consume it all at once.  They will eat discarded food from bins, still-frozen food straight from the freezer, and non-food items, because of their overwhelming need to still that ever-present, unquenchable hunger.

Families of people with PWS learn to live with locked food cupboards, chained and padlocked fridges and freezers, even locked food-waste bins.  They learn ways to distract the person with PWS from seeking food, and from indulging in the skin-picking and self harm that many people with PWS use as a diversion.  They know that love is … cooking rigidly calorie-controlled meals.  They eat their own meals to a schedule and forgo snacks – except in secret – to avert melt-downs in the affected person.  They manage pocket money to ensure that spending opportunities do not include food items.  They make sure that the person with PWS follows a rigorous exercise programme (PWS also lowers muscle-tone, lean body-mass and metabolism, so not only do affected people feel hungrier, they also burn off anything they eat at about half the rate of a typical person). They give the daily growth hormone injections that can help the person with PWS build up lean, rather than fat, tissue.  Family members deal with the intellectual differences that come with PWS, learn how to answer fifty-times-repeated questions (‘perseveration’) and to cope with difficult behaviour kindly and patiently.  Families set inviolably firm boundaries, but with gentleness.

Then their dudes grow up….

Dude David wasn’t keen on moving into a place of his own when he turned eighteen.  He wanted to stay at home with Mum, but over the following two years or so, his care manager persuaded him that his own supported flat would be a good place. The flat was beautiful.  Dude David got to decide how to decorate it and to fit it out with all the things he wanted.  It was perfect.

The support package, however, was a disaster.  Staff didn’t manage demands due to Dude David’s hyperphagia (wish to over-eat) well, so he rapidly gained a great deal of weight.  Their failure to understand and respond properly to his needs led to a marked deterioration in Dude David’s behaviour.  After only ten months, social services decided the flat wasn’t appropriate after all and took it back.  Neither of the alternatives offered was tailored to Dude David’s needs: local residential provision was not geared up for PWS, and all the specialist provision was miles from friends, family and familiar support.  Dude David’s mother rightly insisted that his emotional needs be given priority after all the upheaval and upset, so for now Dude David is in the local residential home, while his gorgeous, barely-used furnishings languish in storage.

Two years on from his original move into the flat, there is ‘hope’ that a specialist supplier will be creating a properly-tailored service for Dude David ‘at some point in the future’, but no word as yet on firm undertakings or timelines.

Sigh.  And sob.

It was precisely because I have heard so many of these doomy-gloomy unhappy stories that I wanted my contribution to #JusticeforLB to be something positive, and so adopted Day 28 of #107days of Action for ‘Drops of Brilliance’.  I hoped that enough stories might come in to make a little book of examples of everyday good practice – maybe even 107 examples.  Some fabulous stories came in – of a teacher who noticed the achievements rather than the shortfalls, of support staff who achieved the Never-before-attempted – and On Ice – by refusing  to admit the word “can’t” into their vocabulary.

But so far, there have been fewer than half a dozen contributions.  I’m loath to believe that I, by myself, can find more sad stories than all the rest of you, amongst yourselves, can find inspiringly brilliant ones.  So I’m challenging you to cap the following post-within-a-post story, with even better ones of your own.

You can leave your own Drops of Brilliance as comments on this blog or add them to the comments at #107days’ Day 28 here.  And your starter-for-ten Drop of Brilliance iiiiiiis:

The Taxi-Lady Comes Up With A Belter.

Grenouille has to wear a medical device that attaches to the body and delivers continuous life-supporting medication, twenty-four hours a day, seven days a week, fifty-two weeks a year.  In order to avoid site infections and skin breakdown, the device has to be moved around every three days.  G’s taxi escort noticed that on some days, G seemed to be finding it uncomfortable, and realised that the car’s seatbelt was pressing into the repositioned device.  Now she checks with G every morning as to where the device is today, and makes sure that G gets to sit on the side of the car where the seatbelt won’t touch it.

Simple.  Thoughtful.  Kind.  Brilliant.

Go on – top that.

Meanwhile, I’m working on my patch for LB’s Justice Quilt.