Emailing my MP

Tags

independent living, LB Bill, voices of disability

Sent to my MP, with copies to friends and family to ask that they do likewise:

Dear MP

Congratulations on your election.

I am writing to ask you if you would kindly consider sponsoring the Disabled People (Community Inclusion) Bill 2015 (‘LBBill’), should you gain a high position in the ballot for Private Members’ Bills.  Otherwise, please would you encourage and support your colleagues higher up the ballot to do the same.  The Bill aims to build on the Care Act and on the post-Winterbourne work, in order to ensure that no disabled people are forced into inappropriate living arrangements simply because no-one is responsible for ensuring that suitable homes are available.

The provisions of the Bill have been drafted by and with people with disabilities of all kinds and their families.  If passed, it will mean that that people with disabilities have the right to a home, not just a placement.  The current draft is available here:

https://lbbill.files.wordpress.com/2014/11/lbbill-draft-2.pdf 

For further information on the genesis, aims and progress of the Bill, please see the Bill website: https://lbbill.wordpress.com/. 

For an explanation of why the Bill is needed in addition to the Care Act, and why its provisions are more appropriate than the medically-oriented suggestions in the Green Paper ‘No voice unheard, no right ignored’, please see:

https://107daysofaction.wordpress.com/2015/05/27/week-10-why-the-lbbill-is-more-than-the-care-act-107days/ 

And for an explanation from some of the people who would benefit from this Bill, please see this short video: https://www.youtube.com/watch?v=MZsAhQ0Hy6U 

Thank you for your time and I look forward to receiving a positive response from you.

Yours sincerely

Kara

WhoByF1re Hovel

YourConstituency
XX9 9XX

 

Feel free to borrow / tweak.  Progress in contacting all Westminster MPs can be seen on the LBBill website and Facebook page.

The Fabric of a Life.

Tags

#107days, #justiceforLB, Connor Sparrowhawk, LB's Justice Quilt

To the University of Lancaster to see LB’s Justice Quilt, which is on display at the Peter Scott Gallery for the rest of this week.  If you get the chance, people, go and eyeball it.  However many pictures you may have seen of it, they do not, cannot, even begin to convey just how beautiful it is.

For starters, the colours are so much more vivid and varied in real life.  There are intense, saturated colours, and delicate powdery ones.  There are shiny, reflective areas and absorbingly matt ones.

Then a quilt is a three-dimensional object, not a flat one.  You need a stereoscopic view of it fully to appreciate it.  And LB’s quilt is three-dimensional to the max.  Patches are decorated with nubby embroidery, bobbly knitting, sharp-edged sequins, smoothly rounded beads, wispy tufts of frayed fabric, spiky lines and knots of metallic thread.  I’d forgotten that my own patch isn’t flat – I’d only sewed the leaves down along the main vein, so that the edges of the three leaflets rise in winged, flying-V shapes from the surface.

I think the shamrock patch was more or less to size, but many patches are irregular; the underlying 4″ x 6″ grid is visible but a long way from being uniformly adhered to (you can see why lead stitcher Janet Read wrote, “I did threaten, at one stage, to stitch a patch that said, ‘Social justice activists can’t measure 4×6 inches’”).  The horizontal and vertical seams waver and meander in places; bands and triangles of material have been stripped in to fill the awkward gaps, adding to the general impression of glorious, barely-organised chaos.

Looking at the quilt, first as a whole and then patch by patch, I felt my eyes filling with tears.  The amount of love, care, and effort made visible and tangible in the quilt is amazing.  And I thought, the #107days campaign and the quilt have created and made real the life LB should have had: colourful, warm, diverse, full of texture and discoveries waiting to be made, chaotic and even messy in places, but full and complete, bounded softly with love and care; and all utterly, indisputably worthwhile.

A big, beautiful life.

Weatherwise.

Tags

intellectual disabilities, true stories, voices of disability, voluntary organisations

A tihirty-five mile trip at ungodly o’clock this Sunday morning, to an outdoor pursuits centre where Grenouille and friends from the disabled sports club were competing in the regional heats of a national competition.

“Lots of layers”, said G’s Papa, who was staying behind to keep Eldest company through AS science revision.  “And waterproofs, and take the golfing umbrellas for when you’re standing around. The forecast says bands of heavy rain.”

As we drove down the motorway, G asked, “Do you think it’s going to rain?”

“I don’t know, love.  I think it was sensible to pack all the waterproofs.  It does look a bit threatening, there’s some dark-grey clouds to the north-west, and as Papa said, the forecast is for rain”.  Under my hands, the car’s steering wheel vibrated as a buffeting side-wind tried to push us into the outside lane.

“I don’t believe the forecast”, said G, in a tone of bright hope.  “Half the time they say something and it turns out totally different.  “

“Is that right?” I said, rather vaguely, one eye on an articulated lorry wobbling to my left, and the other checking out the Beamer roaring up behind me as though keen to get close enough to check whether the inside of my exhaust pipe had been cleaned recently.

G snorted derisively.   In a voice dripping with scorn: “I don’t think the weather people know what they’re talking about.  I’m not listening to any of that old nonsense.”

To keep the wind out, we wore our waterproofs all day; but it never rained.

Sloven Towers and Ordure Hall.

Tags

#justiceforLB, adult LD services, Connor Sparrowhawk, local authority, Ordure Hall, Sloven Health

For nearly two years, since the preventable death of Connor Sparrowhawk, (aka ‘LB’) the organisation under whose ‘care’ he died – Southern Health NHS Foundation Trust – has been making responses of quite monstrous carelessness and crassness.  Its actions have earned the central organisation of the Trust the richly deserved nickname of ‘Sloven Towers’.

There really is a tower!

It started by immediately categorising LB’s drowning in a hospital bath as a ‘natural death’; continued with failure to ensure that remaining patients were safe (two months after he died, the Care Quality Commission failed the unit where LB died on all ten heads of inspection); moved on to putting pressure on LB’s family to stop causing trouble for the Trust; invented a slew of (specious) obstacles to further investigations; scrabbled around for last-minute ways to delay publication of the independent report that found LB’s death was preventable; tried to bully LB’s mother into compliance with Trust preferences and employed smear tactics against her; and most recently, stuck a barrister up in front of the coroner at the pre-inquest meeting, to repeat the long-discredited ‘natural death’ canard and argue that there was therefore no need for a jury.

The coroner, commendably, gave the Trust’s arguments short shrift, and a jury inquest is expected in October.

However, while Sloven is front and centre in the responsibility frame for failing to prevent LB’s death, they are not alone.

LB was admitted to the NHS hospital where he died – an Assessment and Treatment Unit or ‘ATU’ called Slade House, which has since been closed down – because there was not enough support available for him to stay at home safely.  LB, who had autism and learning disabilities, had seemed unsettled in the months before his admission, and his unhappiness had resulted in escalating episodes of behaviour that was dangerous to himself and others.  His mother hoped and expected that the ATU would be able to find out the underlying causes of LB’s behaviour, and help him learn ways to manage his stressors in everyday life.  She also hoped that LB’s time in the ATU would provide an opportunity for Oxfordshire County Council, the body responsible for providing suitable community support to LB, to come up with meaningful help for his return to the outside world.  What little service had previously been offered for LB was not adapted to his needs, and the only alternative offered was the Direct Payments scheme.  The DPs had proved as useless as the Council support, providing money that was unusable, since services or support of a kind that would be helpful to LB were simply not available for purchase by families.  If, when LB’s mother pleaded with them to put something more appropriate in place, OCC had provided the services that would have enabled LB to stay at home, his mother would have continued to ensure his bathing was supervised for safety.  He would not have drowned.

But OCC are also responsible in other respects.  The Council, through its Director of Social and Community Services, was part of the Oxfordshire Clinical Commissioning Group.  The CCG was the body that awarded to Sloven Health the contract to provide learning disability and mental health services.  If Sloven were providing an inadequate service, then it was partly the responsibility of the Commissioning Group for failing properly to scrutinise and monitor the contract.  Let’s not forget that according to the CQC, services at Slade House two months after LB’s death were still so grossly inadequate as to be immediately dangerous to the remaining patients.  But it was worse than that: the CCG had been aware since January 2013 that Slade House wasn’t up to scratch.  It was just that nobody had done anything about it.

OCC also had responsibility for LB’s safety through its membership of the Oxfordshire Safeguarding Adults Board.  The Safeguarding Board should have applied the Deprivation of Liberty Safeguards procedure to LB once he was no longer ‘sectioned’ but was still being held behind a locked door.  It didn’t.

Finally, OCC had the duty to assess LB’s needs and provide the services that would enable him to be safe when he came home.  After a very short time in the ATU, it became evident that being there was not helpful to LB; he was losing motivation and skills; he wasn’t getting any helpful therapy, and he wanted to come home.  But if he came home before the right support was in place, he and his family would find themselves back in exactly the same situation as they had been in prior to his admission.  OCC’s Adult Social Care foot-dragged over assessing and organising support, meaning LB’s discharge was delayed… and delayed.  And while ASC faffed around doing not a lot, LB was trapped in an environment that was so unsafe, he ended up dying there.

So Oxfordshire County Council has responsibility for three areas of failure that led to LB’s death: the inadequate provision of social care which led to him needing admission to the Sloven facility in the first place; the failure of the joint bodies of which the Council was part to provide proper oversight or safeguarding; and the continuing failure to organise suitable social care in the community that inordinately delayed LB’s discharge and left him exposed to unnecessary, and ultimately fatal, risk.

Up until recently, OCC has been very quiet.  Then at the end of March, out of the blue, the Director of Adult Social Services sent LB’s mother a copy of an ‘independent’ review that Oxfordshire had commissioned from a social care consultant.  The council had not told LB’s family that the review was underway or asked for information from them.  It had instead, without family consent or even knowledge, allowed its ‘independent’ reviewer full access to LB’s confidential social services records. The DASS finished by telling LB’s mother that the report – about her own son – was ‘confidential’ to the Council and must not be shared beyond her immediate family without written permission of the said Council.  Dr. Ryan didn’t share the report’s contents at that stage, but she did share the fact of its existence – and also shared the menaces that had accompanied its disclosure.

However, Dr. Ryan’s day-to-day blogging of her interactions with various organisations involved in LB’s (non-)care make it difficult to believe there could be much in the report that isn’t already in the public domain.  Someone commented, ‘I found a copy of the OCC report just lying by the side of the track’ – and added a picture to prove it.

The commenter was quite right.  The threatening tone about breaching confidentiality was, of course, so much spurious claptrap, but when Dr. Ryan protested about the way the report had been created and communicated, she was given more condescending and inaccurate manure.  At one point, the Council tried to explain away the breach of confidence with regard to LB’s records by saying that when preparing the report, the consultant was within the circle of confidentiality because they were working for the Council – thereby blowing their own ‘independence’ argument out of the water.  And the reliability of the finished product was equally bogus.

The report itself proved to be a confection of irrelevance, self-serving half-truths and flat-out lies.  Besides omitting directly to contact LB’s mother Dr. Ryan, the reviewer had also failed to make use of relevant non-OCC documentation that was in the public domain, in particular  Dr. Ryan’s blog, which covered the entire period.  Instead, it seems, the reviewer had taken OCC’s apparently somewhat sloppily compiled records and treated them as though they were in themselves complete and impartial.  A initial trawl through the review showed a number of glaring errors, but in order that this misrepresentation should not come to be treated as a definitive statement of what happened with LB and social care, Dr. Ryan has had to go fine-tooth-combing through the statement, her correspondence and her writing from 2013, to find documentation for a line-by-line rebuttal of the errors.  It has been a time-consuming and soul-wrenching process.  In 23 pages of supposedly independent and impartial reporting, there were 61 examples of provable factual error, opinion presented as fact, or tendentious commentary.

These 61 perversions of fact and truth could have been avoided if Oxfordshire had undertaken a transparent process, or put the report compilation out, with LB’s family’s agreement, to someone truly independent who would have taken account of more than the defensive accounts given by Local Authority officers desperate to cover their backs.  What was produced instead was worse than manure, an unspeakably stinking slurry of shitespeak, smear, and innuendo.  It was textbook Sloven, raised to the nth power: arse-covering untruths, broadcast at random without a thought or a care for the terrible additional damage they would do to an already pulverised family.

Oxfordshire County Hall is an unprepossessing lump of a building: a quadruple-decker sandwich of grubby concrete and dark glass.  For administrative as well as architectural reasons, it will evermore be for me,

Ordure Hall.

Educating Lisa.†

Tags

appropriate vocabulary, mothers, NHS

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

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

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

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

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

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

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

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

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

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

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

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

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

“Er, because G was born at home.”

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

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

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

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

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

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

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

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

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

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

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

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

*****

*****

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

Lessons Learned.

Tags

#107days, #AdsThePoet, #IamThomas, #justiceforLB, #justiceforNico, autism, cerebral palsy, Down syndrome, institutions, mothers

Exam fever has descended on our house, for the second year in a row.  Maybe I’m on the brink of senility, but I don’t remember exams being this big of a deal when I was at school.  You went to lessons, did your homework, did timed single questions every month or so, sat mocks in January, kept pegging away at practice papers, and then stocked up on hay fever preventatives and treatments before the real thing in June.  And, of course, you got a year off from public examinations between your GCEs and your A Levels.

The consequence for schools of public examinations three years on the trot seems to be that there has been very little time in each year for consolidation of knowledge.  Eldest has been galloping through the various AS syllabi right up to the end of this week, and now he goes on study leave.  Er, what?  In effect, by the time he gets to his A2s he will have lost half a term’s teaching from his A-Level courses, compared with the length of time his father and I each had.

Still, his GCSE’s have taught him how to revise methodically, and he has been busy since Christmas condensing his notes down on to file-cards – a different colour for each subject, with coloured spots on them to code for topics – and then expanding them up again.  I don’t think I acquired that sort of skill until I was at University – and even then I only used it for subjects such as law or history, where facts trumped flair.  For language and literature, I just seemed to absorb the books, and, faced with a choice of questions, never had much trouble finding something on which to hold forth in a manner pleasing to the examiners for the length of a forty-five- or sixty-minute essay.

One of my courses was twentieth-century French ‘literature of ideas’: mostly mid-twentieth-century existentialism.  I adored the ambiguities of Camus; enjoyed, in an arms-length kind of way, the waspishness of Sartre (though I could have done without the stodgy density of L’Etre et le Néant); mulled over de Beauvoir alongside the shelf-full of 1970’s feminist texts that my Hall room-mate was only too delighted to lend to me; and laughed out loud at Roland Barthes’ nostalgically lyrical descriptions of wooden toys.  A man who could seriously write, ‘le bois ne blesse pas’ (wood does not hurt), was a man who, in my opinion, stood in great need of the salutary experience of being on the receiving end of an alphabet brick flung with malice, force and accuracy by a younger sibling.  Evidently Barthes’ brother was gentler than mine were, or perhaps, being junior by twelve years, young Michel had been too awed at the brick-flinging stage by the teenage Roland to subject him to these projectile assaults.  But I appreciated M. Barthes’ description and dissection of the then-latest Citroen car, the DS – a bubble of glass and sleek enamel, floating on hydropneumatic self-levelling suspension, which was such an idol that its name was pronounced ‘déesse’, or ‘goddess’.

Unfortunately, it wasn’t enough to read the books; we had also to grapple with the philosophical concepts behind them: Camus’ Absurd; Sartre’s phenomenological ontology; de Beauvoir’s Other; Barthes’ semiology.

On the day of my Final in this particular subject, I had somehow managed to set my alarm-clock an hour early, and having risen, bathed and breakfasted before I discovered my mistake, I decided not to go back to bed – I didn’t fancy getting undressed and having a second bath before re-dressing – and instead did some last-minute cramming on Mythologies.  I’d already memorised a number of quotations, but in his last piece of the book, a mid-length essay called ‘The Myth, Today’, Barthes helpfully provided a little table of levels and degrees of meaning, which I now copied out several times.  Two hours later, in the exam hall, I was faced with a question on semiology that begged for a neatly plotted table to support my disquisition on the evolution of sound into symbol into mythic significance.  I duly sketched it out, wrote my five hundred words, did the other questions required, went home and thought no more about it.  Months later, my tutor pounced on me at the faculty post-graduation sherry reception and told me how the examiners had been particularly impressed by my grasp of semiology in my Barthes essay.

I didn’t tell her about my last-minute cramming, or that I could no longer remember anything much about semiology beyond the notion that ‘things can be more than they seem’ and the general outline (but not the content) of the ‘Myth Today’ table.  University had also taught me the wisdom of accepting a compliment gracefully and of not digging unnecessary holes beneath my own feet.  I smiled, and thanked her, and moved on.  The lessons in social graces I had not only learned, but practised and internalised; the Barthes, alas, had been learned, but not remembered.

That, I think, is the problem with the ‘lessons learned’ from Winterbourne View, from Stafford, from twenty, thirty, forty years of horrified discovery.  Each time, the lessons to be drawn have been so obvious that even the most wilfully ignorant could not dismiss them.  Each time, the atrocities have been roundly denounced, the promises to learn sonorously delivered.  Each time, it is claimed that the lessons have been learned; and each time it has become painfully evident that if they ever were learned, they have not been properly remembered.

Such lessons have to be learned collectively, at the organisational level, so that they become part of the organisation’s automatic reflexes.  Otherwise, the learning dissipates, as individual staff-members leave the service and their replacements are not imbued with the same knowledge.  In an organisation like a hospital, the loss of knowledge can be startlingly rapid.  While a core of staff may be long-term employees, many health professionals need to keep moving on to new posts in order to foster their careers, while many non-medical staff may also be in short-term jobs.  Staff turnover across the NHS has been calculated to be of the order of 25% per annum.  That’s a very rapid attrition of any unembedded learning.

Services need to organise themselves so that they don’t just learn: they retain and transmit what they have learned, so that future versions of themselves know that people with epilepsy don’t get left alone in the bath; that people with very high care needs and a risk of aspiration are not, at their most vulnerable and precarious times, made to share the attention of a lone staff-member with three other similarly disabled people; that people whose mothers are worried about their significant chest infection need to see a doctor as soon as possible; that having a GCS of 3 just now doesn’t mean that you have never had, and never will have, a higher score.

Learning a lesson is useless if you don’t remember it.