Riding Out with the Mothers from Hell.

Tags

#107days, #justiceforLB, Local Authorities, mothers, Special Needs Education

Grenouille’s nursery schooling was a real patchwork.  On Mondays, Wednesday and Fridays, it was the local mainstream pre-school, initially with me as support and then, once G hit three and became eligible for funding, with one of two 1:1 aides.  On Tuesdays, we had a home visit from the Portage worker (followed by a peripatetic Early Years Teacher once G graduated from the Portage programme), and on Thursdays, we went to the specialist nursery that worked particularly on G’s motor difficulties.

I say ‘we’, because the philosophy of the specialist nursery was that they asked parents to stay for part of the sessions, so that the Mums and Dads (and Nans and Grandpas) could know what their child was learning, do some of the activities together, and be able to carry those activities through into life at home.  We family members worked through passive movement and plinth exercises with our children, then retired as a group to the parents’ room until we were needed for snack- and meal-times and other activities requiring a level of 1:1 support beyond what the staff could provide.

When G started school, the head of the Resource Base was happy to support G in continuing with the school-level programme that the specialist centre offered, so on Tuesdays, I drove 10 miles south to collect G from school at lunchtime, then headed 15 miles north to the centre.  In the scheme of things, our journey was relatively short – children aged 5-15 came from a  50-mile radius to attend this session.  Although parents were no longer required as helpers in the same way as at the nursery stage, most of them – all mothers, most weeks – had come too far to go home during the sessions, so we would sit in the parents’ room and enjoy the luxury of a legitimate three-hour break.

Inevitably, a lot of the conversations that went on were about comparing notes and swapping tips, because there was usually someone needing a steer from the experts by experience.  One mother knew just about everything there is to know about gait training and the different therapies and equipment available; another was a Braillist and knew a lot about visual impairment; others could offer insights on gastrostomy and tube-feeding.  After my epic fight with the Local Authority to get G’s Statement done properly (22 months, start to finish, and five hours in front of an SEN Tribunal), I suppose I was the barrack-room lawyer, with a special interest in speech and other therapies.  At any rate, I could quote large chunks of the Education Acts, the statutory guidance in the SEN Code of Practice, and the  judgements in cases like ‘Lancashire’ ( R v Lancashire County Council ex parte M 1989 2 FLR 279).  For many of the children who attended the specialist session, the issue of therapies-as-education was a continual bugbear; they needed therapies in school in order to be in a position to benefit from other aspects of education, but the LAs were deeply reluctant to arrange them and foot-dragged endlessly over providing then.  I could point people at where to look for the sort of evidence they would need to support SEN appeals, or suggest ideas for wording of letters to health professionals, LAs and the Tribunal.

One dark November afternoon, a mother brought in a file of correspondence with her child’s LA, documenting a long tussle over the LA’s refusal to provide therapies under the Statement, and while wind-driven rain whipped horizontally across the windowpanes, we sat in the bright warmth and went through it together, with much wielding of a marker pen and comments from me on the rubbishness of the LA’s process.  The only explanation that appeared plausible for the Authority’s seemingly wilful refusal to understand her child’s needs was that this mother was a non-native English speaker, and that her sometimes unusual idiom was being misconstrued on purpose.  With input from the other mothers, we worked together on finding forms of words that even the most deliberately obtuse LA could not fail to understand.  Afterwards, we rewarded ourselves with another cup of coffee and over the steam from her mug, she said, “Now I understand how you got the Statement exactly for G as you wanted.  At County Hall, must they a lot worry when they you coming see !”

I was surprised into a crack of laughter, and nearly slopped hot coffee into my lap.  “Oh, I reckon G’s SENA file has a big red warning stamp corner-to-corner across the front cover, saying, ‘MOTHER FROM HELL'”.

At which the other dozen mothers in the room burst out laughing as well, and chorused, “Ours too!”

As #107days rolls on, I very much hope that there are some people, in LAs and other public bodies, who are going to find out that their worst nightmare is a band of mothers who have been through Hell for their children and, having emerged toughened from the flames, have now allied to hunt down those responsible for setting light to the fires.  And pyres.

Saddle up!

#JusticeforLB

 

The Conference.

Tags

#107days, #justiceforLB, adult LD services, LD professionals, learning disability, Learning Disability Studies, voices of disability

No reply as yet to the e-mail I sent last week.  I guess investigations take time….

After we got Very Important Medicine back into Grenouille’s treatment régime on Wednesday, it took a little while for things to settle down.  In fact, G wasn’t well enough to go to school on Friday, which meant I had to do some emergency rescheduling for my planned activities, too, so both this blog and my head are still somewhere behind ourselves.  I want to go back a week to the #107days/Day 82 Conference on Learning Disability Studies.  I have to admit that before the Conference, and despite its title of “Challenging Attitudes, Changing Lives”, I was more than a little sceptical.

I have reason to feel deeply uncomfortable with the word ‘Studies’ in regard to dudes, although thus far more on the medical than on the social science side of things.  Grenouille is ‘an interesting case’.  Born with a rare genetic difference, G has gone on to develop some even more unusual medical conditions as a result of the underlying disorder.  Health professionals have been keen to document and discuss these, and although the formal studies are designed to be for the benefit of affected individuals, I am not so naïve as to think that’s their only purpose.  G’s father does research, and I know exactly what sort of pressure researchers are under to publish regularly, and how much of a career-boost a striking paper can be.  I also know what is supposed to happen to get ethical approval for targeted studies rather than generalised ‘fishing expeditions’ and how informed consent to participation is supposed to work.  So I went ballistic the day that G was diagnosed with an ultra-rare new condition and the doctor doing the consents for medical photographs asked me to sign the form with three consent boxes – (a) for personal medical records, (b) for use in training and education within the Trust and (c) for publication in research papers and professional journals, all pre-ticked.  I gave him a fishwife earful there and then, seized his pen and scrubbed out (b) and (c) so hard that I shredded that part of the form and left biro-lines on his desk, and marched off to medical photography shaking with rage and with tears of fury blurring my vision.  The medical photographer, looking at the tattered pink slip I presented, and at my no doubt red and blotchy countenance, said, gently, “I see it’s very important to you that these photographs be kept confidential.  Please be assured that they will be.”  That calmed me enough to be able to help G manage to sit still, in uncomfortable positions, under painfully bright lights, for the photographs; but I later wrote to the Chief Executive of the Trust to complain about its consent processes, which seemed to me to be severely lacking in the ‘informed’ component.  The Trust took the view that because I had deleted the unwanted consents, there was no harm done, and therefore nothing wrong with their process.  They seemed unable to understand that the point was, that not everyone would feel able as I did to call medical personnel out on poor practice.  G’s Papa also went up vertical when he heard what had happened, but neither of us managed to get the Trust to rethink their concept of ‘informed consent’ and how properly to implement it.  Sigh.

On telling the story to friends – in an attempt to check that I was not being unreasonable – I got a pretty consistent response: a sharp intake of breath, followed by variations on a theme of ‘How dare they?’.  “That’s evil,” said a friend with three (typical) children.  Only two people failed to react with outrage: a GP and a pharmacist, who both seemed to think that potential research benefits trumped informed consent.  “Not surprised,” said G’s Papa, who has spent years trying to inculcate the ethics of research and consent into medics, and has found with each new study that his work is to do over again.

My other reason for feeling dubious was that over the years, G and our family have come into contact with, literally, hundreds of professionals.  I last totted them up when G was still in nursery and we had to do a list of ‘relevant professionals’ for the multidisciplinary team that was managing G’s entry into formal education at age four.  Even then, it ran to over fifty, and since then we’ve moved to three new hospitals and into community care teams as G’s needs have become more complex.  But with a few honourable exceptions,  most of what we’ve achieved for and with Grenouille has come about, not from professional actions, but as a result of our own efforts, or by following tips and hints from other parents.  That’s not to say that the professionals haven’t done their jobs; they have.  Still, we’ve had to go looking for them and tell them what we needed, rather than them coming up with ideas and suggestions.  The honourable exceptions include, but are not limited to, the Health Visitor who made sure G got Disability Living Allowance, by rocking up one day with the forms and a big box of tissues, and offering to sit with me until the whole hideous forty pages were completed; the paediatrician who, without being badgered, did referrals to every conceivable specialist for screening AND one to the education service so that G was known to them from very early age; and the Head of the specialist nursery who spontaneously offered to write a report to help us start the process of getting G a Statement of Special Educational Needs.

On the other hand, we would never have found the specialist nursery – which was in a neighbouring town – if a mother whose daughter had previously gone there, hadn’t stopped me in the street for a brief conversation, written the contact number on a scrap of paper and pressed it into my hand.  The woman was a stranger to me.  She just happened to clock Grenouille one day and decided to be brave and, in the nicest possible way, to stick her nose in.  I never met her again.

So I hadn’t noticed LD Studies making any difference to professionals’ attitudes in our everyday lives.  I guess my attitude to such academia was a bit like that of my father’s colleague’s housekeeper.  My father was an academic, and one of his senior colleagues – in a largely male-dominated field – was a single woman.  She lived somewhere in a beautiful and rural part of the Thames valley, in a big Edwardian house set in extensive grounds.  As a woman living alone, with a housekeeper who ‘lived out’, she preferred to be listed in the telephone directory by her academic title, rather than as ‘Miss’.

In her house, as in many older houses at the time, the single telephone reposed not in Dr. L’s study, but on a table out in the hallway; and one morning when she was sitting at her desk, she heard the housekeeper picking up a call.  “Hello?  Yes, this is Dr. L’s residence……. Oh dear.  Well that does sound nasty.  Poor little mite.  Mmn, I’ve heard there’s a lot of chicken-pox going about.  Yes, if he’s got spots in his mouth he definitely needs to see a doctor….. Well, you’ll have to phone the surgery to get an appointment, I can give you the number if you don’t have it.  What?  Oh, no, there’s no point in asking to see Dr. L.  You see,” – lowering her voice, which still, however, clearly penetrated the study door – “she’s not the sort of doctor who could do anybody any good.”  Dr. L, whose work had in fact brought a lot of (non-medical) benefits to humanity, thought this a tremendous joke and would happily tell the story against herself.

(As an aside, the joke in G’s Papa’s family was that while G’s scientist-Papa is a ‘real’ doctor, since he has a PhD to his name, his medically-trained ‘Doctor’ brother was merely an MB ChB.  Although since he became a consultant, Dr. Uncle has reverted to ‘Mr.’  It’s all very confusing!).

Anyway, when it came to academic doctors and the Learning Disabilities Studies programme at Manchester, I couldn’t have been more wrong.  Far from putting dudes under a research microscope and prodding at them to see if they will do anything interesting, the Manchester course starts from listening to the experiences and views of dudes and doing a lot of thinking about how other people can support them without getting in the way.  The course is built on foundations laid down by the Partnership Steering Group, a body of dudes, academics, students and supporters, who set up the framework for the programme that is delivered to students.  Dudes teach students on some of the courses, do research and publish papers.  In 2012, they edited an entire special edition of the British Journal of Learning Disability.  And last Monday, it was dudes chairing and running the conference.  Absolutely fantastic.

My eyes filled with tears again, but this time of gratitude.  I was so pleased to find an academic milieu where people with learning disabilities were treated as just that – people – and where making the time for them to express their opinions wasn’t even seen as a ‘reasonable adjustment’, but simply a basic human courtesy.  It fairly took my breath away, and it was a struggle to find the voice and volume to express my appreciation of their work.

Later in the day, we heard from a former student on the course who now works in service commissioning, talking about how what she learned on the course has affected her practice.  It has taken time for her to get into a position where she can begin to influence the future direction of services and change them for the better, showing clearly how important it is for this type of course to be made a permanent part of the academic offer, so that change can propagate through the system.

Having gone in as a sceptic about LD Studies, I was so rapidly converted that by the end of the morning, I was horrified to learn that after twelve years, the Manchester course is to close.  The Partnership Steering Group’s statement says:

BA (Hons) Learning Disability Studies – University of Manchester
• Our course has achieved so much since being invited to the university in 2000. It has raised the profile of partnership approaches to teaching and research in learning disability studies; learning disabled members contribute their ‘expertise by experience’ to PSG meetings, lecturing, conferences, assignment assessment. PSG achieved a world first with the peer reviewing and editorial for the special issue of the BJLD; graduates are well-equipped to take up roles as social leaders in general but in particular in learning disability services for adults/children; 100% NSS score last year
• Learning disabled people are some of the most excluded and vulnerable in society. on average they die 16 years before members of the general population due to inadequate investigation, diagnosis and treatment (rather than lifestyle choices like the general population). Services are not working – evidenced by recent abuse scandals like Winterbourne View, Fiona Pilkington and daughter, MENCAP Death by Indifference reports. Last year CQC found over half of learning disability services did not meet expected standards, with failings a direct result of care that is not centred on the individual or tailored to their needs. Person-centred thinking and approaches are a key principle of the LDS course.
• Manchester Institute of Education says there are plans for learning disability studies to be continued in some capacity but at the present time they will not inform us how. We are very concerned that this will only be in relation to children (i.e. education/schools) – thus overlooking adults completely i.e. the majority of life.
• University says course was closed because we didn’t reach target admission numbers but the method by which the closure was carried out was unfair and did not allow students to be admitted via Clearing or right into September as is usually the case. PSG members don’t understand why it all has to be about numbers/targets. They think it should be about people – improving the lives of learning disabled people. Therefore on behalf of students past and present and the PSG and learning disabled people we would ask you to sign our petition to request that the university reconsider their decision to close.

Just to repeat, that petition is here.

It aims to save a course that not only provides a space for dudes’ voices to be heard, but trains future professionals to develop the ‘right kind of ears’ for properly listening to dudes.  The sort of ears that would have heard enough to prevent Connor Sparrowhawk from drowning in an NHS bath.

I hope you will feel able to offer your support.

Common Trials: The e-mail.

Tags

#107days, (un)accountability, medication, true stories

 

TO: Charlotte Nemo, Medical-Supplies-Company
FROM: Kara
SUBJECT: Very Important Medication for Grenouille
DATE: 11 June, 2014

Dear Charlotte

Here is the timeline of events from my perspective:

Sunday: Discover device for administering Grenouille’s Very Important Medication is empty.  Go to get new vial & find that there are none.  Unfortunately, another carer must have changed the vial last time and thrown the box away, or I would have called a fortnight ago.  Phone your Medical-Supplies-Company, which is responsible for managing the supply of, and for delivering, this medication.  Speak to helpline worker.  Told that there is no valid prescription and that nothing can be done as it is Sunday.

Ask to speak to manager.  Speak to Matthew, who confirms that M-S-C has allowed prescription to go out of date and that even if it had not, there are no pharmacists available to dispense it at the weekend.  Explain to him how important VIM is, as G is also on Life Supporting Medication, so abrupt withdrawal of VIM is likely to cause problems with the LSM regime.  Matthew says he will send e-mail to pharmacist straight away, for attention first thing on Monday (8 a.m.).  My understanding is that he is asking the pharmacist to request immediate faxed prescription from GP so that the delivery will come out on Monday.  Matthew says he will not be in until 11 a.m. on Monday (fair enough).  Ask him to ensure that I am called on my mobile as soon as the delivery slot is arranged as I will need to make arrangements for someone to be at home to receive the delivery.  Am under the distinct impression that Matthew has undertaken to do this.

Call G’s specialist nurse and the on-call specialism registrar at the Children’s Hospital for advice on altering LSM doses.  There is no set empirical method for doing this, it will involve trial and error and a greatly increased level of (invasive)  monitoring – tests 2-hourly, day and night.

 Go short of sleep to ensure necessary overnight testing is done.

Monday:  Send G to school with revised care plan.  Speak to transport and school support teams to ensure that they understand the changes to LSM doses and testing, the reasons for the changes, and what to do if test readings are abnormal.  Go to the LDS conference.  Arrive unavoidably late and keep having to try to call M-S-C, so cannot fully participate.
No call from M-S-C received by lunchtime.  Having problems calling the M-S-C helpline from my mobile.  At my request, Eldest phones the helpline several times to try to find out what is happening.  Eldest cannot get a comprehensible answer out of anybody.  When I get home, it is to find that despite the increased testing, G has suffered an adverse health event, entirely attributable to difficulties with rebalancing LSM in the absence of VIM.
I finally receive call in late afternoon from Matthew.  Told that as the prescription was not returned by 4pm, which is when the pharmacists leave, it won’t be coming out until Tuesday.  Am given walk-through of convoluted process.  Frankly, could not care less.  Your process is your problem, I am interested in outcome, which is that G has suffered through being deprived of treatment.
I ask why non-receipt of prescription was not chased up, am told that’s the pharmacist’s responsibility. Matthew had sent e-mail on Sunday to be with pharmacist at 8 a.m Monday.  Agree that I knew Matthew wasn’t in until 11 am on Monday, but why did he not then check up, as promised?  Apparently he had a two-hour meeting first thing.  That takes us up to 1pm, why didn’t he get on to it then?  He had to meet with his own team.
NOT GOOD ENOUGH.  As important as meetings may be, they are of microscopic significance compared with doing the job of getting urgent meds out.  If this were a question of customer service, it would be bad enough, but actually, it’s a matter of PATIENT CARE and therefore is worse than abysmal.
Tell him to call me with a delivery slot when one is arranged, put phone down.  Subsequently receive self-justifying (and slightly patronising-in-tone) expectations-management voicemail from Matthew, explaining again that process is complicated.

 By now it is after 5.30 pm.  Phone GP surgery to find out why they failed to return prescription in good time.  Surgery admin staff can find no record of prescription request.  Suggest I call again in the morning when the repeat-prescription-processing staff will be back in.

Go short of sleep to ensure necessary overnight testing is done.

Tuesday:  Call GP surgery first thing (8 a.m.).  Still no record of VIM prescription request.  Speak to repeat prescription manager, who assures me (and I have no reason to disbelieve her) that surgery has not received a VIM prescription request since April.  Tells me that she will take on the responsibility of finding out what needs to be done, and making sure it is done.  Send G to school with revised, revised care plan etc.  Leave for work.
Receive phone call from Charlotte while driving back from my work appointment, she agrees to call me later.  Charlotte calls after 4.30 pm & we discuss matter.  Charlotte offers apologies and says she wants fully to investigate the errors.  I agree to send this e-mail as my contribution to the investigation.

VIM delivery arrives about 7pm.  Credit where it is due, thank you to whoever thought to include standard quantities of accessories without my needing to ask for them.    However,  to avoid overnight problems, G takes VIM in morning, so needs to stay on the revised LSM regime for one more night.

 Go short of sleep to ensure necessary overnight testing is done.

 Wednesday: Administer normal VIM dose and return to normal LSM and test regimes.

Questions I would like answered:

• WHY wasn’t a repeat prescription requested from the GP in a timely manner?
• WHY was the urgent request not followed up on Monday by Matthew?
• WHY did the pharmacist make no request to the GP on Monday?
• WHY was I given the false impression that the hold-up on Monday was the GP’s surgery’s fault?
• WHY was Charlotte the first person to offer a genuine apology, i.e. acknowledge that M-S-C had got things wrong, AND make sure they were put right a.s.a.p?
• HOW will you ensure that this doesn’t happen again?
• WHAT will you do to make sure that this type of incident doesn’t happen to anyone else?

Sincerely

 Kara

 

Academia, inspections and learning inability. With added frogs.

Tags

#107days, #justiceforLB, adult LD services, Connor Sparrowhawk, institutions, learning disability

Took a day out from my usual round to attend the Challenging Attitudes, Changing Lives conference in Manchester and came away with about a fortnight’s-worth of daily blog posts buzzing round in my head – on how people with learning disabilities are mostly admitted into academia only as subjects (veering towards objects), not as contributors; on what it means to be human; on the benefits traps that prevent people from being properly rewarded for making valuable, if intermittent, contributions; on patience and patients; on my new ambition: one day, to sing a duet with the tuneful David from DIY Theatre Company.  And a growling rant on the uselessness of the delegated/contracted-out services that, at regular intervals throughout the day, kept me distracted in a three-cornered and ultimately utterly ineffective phone conversation.

I don’t have time this evening to write any of them (boo! hiss!) so instead here are some brief thoughts on some old acquaintances who – mercifully – had very little to do with the day: the Sloves.

Remember how in September 2103, the Care Quality Commission inspected Slade House, the short-term assessment and treatment unit where Connor Sparrowhawk died, and failed it on every single count?    And that the reaction of Southern Health was to close the unit?  And that it’s entirely unbelievable that this closure was arranged in the interests of the residents/patients?  That their needs and interests had never seemed to figure largely in Sloven’s concerns?  Instead, it  looked like an easy way for Sloven Health to extricate itself from an uncomfortable corner?  No unit = no problem, right?

Well, Slade House had a partner unit, called John Sharich House, for medium-term assessment and treatment.  It remains open, and was reinspected by the CQC in May 2014.  Here’s what the reinspection report had to say:

We spent time observing the daily work of the unit. Although we heard warm personal interactions between staff and patients, we noted little obvious therapeutic activity throughout the day. Staff stayed in the staff room for considerable lengths of time, working on administrative tasks. This surprised us, as this had been an area of rigorous discussion after the previous inspection.
……
We saw that there were five staff on duty for five patients. The staff told us that four of the five patients being cared for would be discharged soon and arrangements were being made for this. We were able to speak with some patients in John Sharich House, but one patient did not wish to speak with us. We asked them about the assessment, treatment, care and support they received. One person told us it was “okay” and said they were happy being cared for there.

Another patient told us they were not happy to have had their baths stopped. We were surprised to hear that bathing was not allowed for anyone. We asked why this was. We were told this had been a response to a death in the unit last summer when a young man had died in the bath. We asked if this decision had been made with input from all relevant professionals and from the patients it concerned. We were told it had not.

Patients told us that their consent was sought before any care or treatment was commenced. However, it had not been sought regarding the decision on bathing and one patient was able to tell us they were “upset” about this.

When it comes to learning disability, Sloven Health seems to have a learning inability.  The blanket ban on baths (though presumably not a ban on blanket baths) so spectacularly misses the point that it reminded me of another frog story, this time from The Bydand Myths.  Those of a squeamish disposition may want to stop reading now.

‘The Glaswegian lecturer shouted, “Attend, I am about to prove something of great importance.”  He cupped his hands round a frog on his desk.  His students craned forward.  “Jump!” said the lecturer, taking his hands away, and the frog dutifully sailed through the air.  It was retrieved and encompassed once again in the lecturer’s grasp.  “Jump!” he said again, and the frog obeyed.  The lecturer took out a penknife and cut off the frog’s legs.  “Jump!” he ordered.  “Jump!” he said again.  And finally, “Jump!”  “You see,” he told the class, “When you cut off the legs of a frog, he has difficulty hearing.”‘

Frankly, there is no conceivable excuse for Sloven’s deafness.  Nor for their – in all senses of the word – dumbness.  Even though, in respect of their non-care of Connor, they don’t have a leg to stand on.

Common Trials: Living in the Valley of the Shadow.

Tags

#107days, #justiceforLB, learning disability, preventable deaths, Sloven Health

You may have seen the figures going around about how people with Learning Disabilities die, on average, fifteen years sooner than people without.  I stumbled today across the 2010 report that seems to be the original source of the figures.

It’s called, in a superbly what-it-says-on-the-tin, no-bull way, ‘How people with learning disabilities die‘.  For a report based on statistical analyses of probability and therefore necessarily using terms like median, Standardised Mortality Odds Ratios, confidence intervals and Chi Square tests, it’s brilliantly readable.  Props to the authors for thinking very carefully about their use of language.

What it says is that All groups with definite or possible learning disabilities died younger than people without.  People with learning disabilities, but no physical condition reported as a cause, lived longest; but the age by which half of these had died was 15 years younger than for people without learning disabilities.

In other words, even if you are physically fit and healthy, having a learning disability is likely to shorten your life significantly.

If you have a physical condition underlying your learning disability, such as cerebro-spinal malformations or a genetic disorder, your lifespan is likely to be even shorter.  People with Down syndrome commonly die in their fifties and sixties, and people with hydrocephalus / spina bifida in their thirties and forties.  I guess it’s commonsense that if you have a physical condition, your body is likely to wear out sooner.

We had to begin facing this when Grenouille was seven-and-a-bit.  The little body that, up to then, had seemed perfectly healthy, began manifesting various conditions that are life-threatening.  Ever since, G’s, and our, time has unfolded in the shadows of a growing mass of medicines and machines that narrow our view down the days, even as they keep the slightly-bigger body tethered to life.  Every so often, my mind tiptoes around the idea that one day we will probably have to say goodbye to G; that it’s very unlikely to be the other way about.  How many parents, I wonder, live with the knowledge that it will almost certainly be them, one day, burying their child?  I probably have a disproportionate number of such parents in my acquaintance.  Like calls to like.

I tell myself that at least we had those seven (and a bit) gloriously carefree years; and that a couple of brushes with the darkest shadows since have taught me to value every day in a way that I didn’t before.  That as G’s Mum, if someone has to follow a coffin, grieving, I would rather it be me than G.  Only if it’s G’s body giving out, though.  Not if it’s because somebody blundered with the medicines or the care.  If that were to happen, I would be a tornado of fury and retributive vengeance.  Less Psalm 23 and more Exodus 21:24.

The authors of the report, of course, did not go into eye-for-an-eye mode, but they did recognise that it was eminently possible that some of these very early deaths were not due simply to imperfect bodies breaking down faster.  They looked at specific causes of deaths by age groups and compared causes of death in learning-disabled and non-learning-disabled people.  They found, as you’d expect, that people with Down syndrome, for example, were more likely to die of heart or thyroid-related problems.  Heart and thyroid problems are commoner among people with an extra Chromosome 21 than among the general population.  It would be likely that causes of death would correspond with the prevalence of those conditions, giving rise to the differences between people with T21/Down syndrome, and people in the general population.  However, even allowing for the deaths that could be linked to specific physical conditions, it seemed as though the death-rate amongst people with learning disabilities was higher than that of the general population.  It was reasonable to infer that some of these deaths were probably preventable.

On the subject of avoiding preventable deaths, the authors said, Two, possibly preventable, causes stood out as particularly important, because they were common and affected most groups of people with learning disabilities. They were lung problems caused by solids or liquids going down the wrong way (14% of deaths where a condition associated with learning disabilities was reported), and epilepsy or convulsions (13%). 

They also noted that Just over 5% of people with hydrocephalus / spina-bifida died with pressure sores; in three quarters of cases this had led to an infection of the blood.

And their conclusion? Services looking after people with learning disabilities should pay particular attention to these problems.

I’m guessing this short report never showed up in the heaped paperwork loading the desks and occupying the attention of the people at Slade House and Sloven Health.  I can’t help asking myself if it would have made a blind bit of difference if it had.  And answering myself, “Probably – not.”
Another blot of gloom to add to the cloud weeping above our vale of tears.

 

 

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.

 

Peter and bereavement.

Tags

adult LD services, local authority, true stories

Another unexpected story.

When we moved to our present house, Peter was one of the first people to greet us.  He chatted about the previous owners, asked lots of questions about us, advised us on some local facilities: (“Do you like a pint?  Don’t go to the Bell, it’s not a pub for a lady.”)  He was a delightfully friendly and cheerful dude and would always pop over for a natter whenever he saw me clipping the front hedge or working in the garden.

In his late forties, Peter lived with his elderly mother in the family home – a three-bedroomed Local Authority house in the estate across the road.  He did the physical work around the house and garden under his mother’s direction, and night carers came in to see to his Mum when he went to bed.  About a year ago, his Mum became very ill.  We were awoken several times by the blue ambulance lights flashing across the way while a stretcher bumped out of Peter’s front door, and Peter’s conversations became less frequent, shorter and more worried.

I haven’t seen Peter around lately, but yesterday, I bumped in to him in the centre of town, looking uncharacteristically morose, and we had a long chat.  His Mum died in mid-February.  I hadn’t known, and expressed regrets both for his loss, and for not having realised that his Mum had died, “Although I did notice I wasn’t seeing you around this Spring”.

Peter tells me that’s because he isn’t living in the area any more.   As a single man, he wasn’t allowed to stay in a three-bedroomed house.  The Council has moved him to a one-bedroomed bungalow in another part of town.  Peter didn’t want a bungalow; if he had to move to somewhere one-bedroomed, he would have preferred a flat, but all three offers he was made were for bungalows and he had to take the third one or he would have been made homeless.  He is particularly incensed by the fact that the bungalows are all wheelchair-adapted, with ramps and level-entry showers –  he feels that he is being written off (“I’m only 50 and there’s nothing wrong with my legs”) and also that ‘some poor old soul’ who needs these adaptations is missing out on them.  But, he says, the Council was desperate to lay hands on the three-bed house and moved very quickly to prevent him under-occupying a family-sized property.  I make noises of agreement that February to May seems like a pretty swift move.

Peter says that actually, he’s been in the bungalow for the best part of three months.  His Mum’s carers helped him register her death, and the Council said it would pass the information on to other relevant departments, to save Peter struggling with difficult paperwork.  The Council were certainly very efficient in passing the news on to the Housing Department, because Peter got his termination and resettlement notice four days after his Mum died.

He and the rest of his family were still in the middle of arranging the funeral.