Petra: Rolling Rocks Uphill.

Tags

#7DaysofAction, #justiceforallthedudes, (un)accountability, adult LD services, assessment, babies, learning disability, Special Needs Education, true stories, voices of disability

Week Two of #7DaysofAction for ATUs has come and gone, and there seems to be very little good news.  When I wrote the end-of-week summary piece for Week One, back in April, I was quite optimistic that Education, Health and Care Plans would in future supply support to ensure that young people would be diverted away from ATUs before they ever got near one.  However, EHCPs do not seem at all to be working as envisaged, being frequently late in arriving and often inadequate when they do.  Then this week, I heard a story to make anybody despair.

Petra is a 20-something mum-of-three.  She has an eight-year-old son, a six-year-old daughter, and a five-month-old baby, and the two older children are both struggling in school.

Petra herself had a mixed experience of school.  She loved learning, but she had trouble writing things down in the way teachers like them arranged.  At secondary school, she especially enjoyed history and English, but again, her written work meant she ended up in bottom sets for all subjects.  Most of her fellow-pupils in these groups were noisy and disruptive.  Petra, a quiet and unassuming person, could neither quell their boisterousness nor study well in the midst of it.  Although she sat a full sweep of GCSE’s, she was ungraded in every single paper and left school without a qualification to her name.

When her son was born, he was found to have a heart defect.  His sister was hospitalised with repeated infections as a baby, and was very slow to walk.  By the time the little girl was four, she was still in nappies and didn’t speak a word.  And by then, her big brother was behaving in a way that was hard to manage.  He slept very little: four or five hours a night; and when he woke up, he woke the whole house up.  Neither child appeared to have any concept of danger, so Petra needed to have eyes in the back of her head.  That’s difficult when you are permanently exhausted.

Social services became involved.  Huge meetings were convened in Petra’s living-room, with every chair and all of the floor occupied by strangers.  Petra and her partner were sent on parenting courses and workers dropped in to watch how they managed the children.  Petra felt criticised and scrutinised.  She did everything that she was told to.  But it made no difference to how the children acted.

Eventually, Petra’s doctor arranged for her daughter to have genetic testing.  The tests came back showing her daughter had a genetic difference.  The rest of the family were tested.  Petra’s son had the same difference – and so did she.

Petra’s own Mum says she spent Petra’s entire childhood voicing her worries about her sweet, slowly-developing daughter, in vain.  She was told, repeatedly, that she was an over-anxious mother.  Now, way too late for help,  Petra was finally diagnosed with a learning disability arising from her genetic condition.  The Adult Speech Therapy service at last assessed Petra’s communication and wrote a report explaining her difficulties, and what services should do to help her understand.  Petra took the report to various departments, trying to find someone to listen to her concerns about her children.  No-one in the Local Authority seemed to hear.

Petra may not have passed any exams, but she knows how to use IT and social media.  Via the internet, she found a support group for people with the condition that she and her children have.  She got information, advice and – a new experience for her – found friends.  With support from her internet friends, and a great deal of effort, she managed to get a Statement of Special Educational Needs for her daughter.  But there were continuing problems.  Her daughter’s behaviour was increasingly hard to understand and manage; she insisted on routines and had great difficulty moving from one activity to another.  If anything was not to her liking, she would kick off into epic tantrums that involved constant screaming, destruction of anything breakable in the vicinity, and physical attacks, for hours on end.  Her daughter’s paediatrician ascribes all this to her genetic condition, but a locum paediatrician described it as autistic behaviour.  Two years later, Petra is still trying to access a formal autism evaluation for her girl, while enduring physical assaults from her daughter that are becoming more serious as the child grows bigger and stronger.

In the meantime her son has been falling further and further behind his classmates.  Now in Year 4, he cannot even manage Reception-level work.  He doesn’t understand how to play with other children in a give-and-take way.  He has no friends and Petra worries he will be picked on and bullied for his oddities.  In July 2014, she wrote to ask for a Statement for him, but her Local Authority told her they were not doing Statements any more because EHCPs were starting that September.  Petra asked, through the school, for him to be given an EHCP assessment.  He has not yet been assessed for an EHCP.  He still has no concept of danger, and is over-friendly to strangers, to his mother’s considerable alarm.  He sleeps no more than he ever did and whiles away the wee small hours, either with tormenting the rest of his family, or with destroying his bedroom: disembowelling pillows and mattresses, picking the paper off the wall and dismantling his toys and furniture.

With all this to contend with, Petra and her partner did not intend to have any more children.  They did not realise baby number three was on the way until relatively late on in the pregnancy, and then they were in a horrible quandary.  It was too late for a medical or surgical termination of the pregnancy.  The option they were told about was a ‘partial-birth’ abortion, which would only be offered if the baby was disabled.  This baby would have the same 50/50 chance of inheriting the same condition as the elder two, but Petra decided she couldn’t face giving birth to a dead baby.  In the end she and her partner didn’t bother with an amniocentesis, held their breaths and hoped.

Petra asked for genetic testing for the baby immediately after birth.  The hospital doctor first tried to dissuade her, then simply failed to send the blood samples off for processing.  Petra, in a near-zombie state from caring for a non-sleeping newborn alongside her two non-sleeping children while recovering from a C-section, had to ask, cajole, insist, and finally take the baby for a second, wholly unnecessary blood draw.  It confirmed what she already feared from observing her infant: the baby also had the genetic condition.

Petra asked for help.  Her partner, as exhausted as she, was suffering seizures brought on by tiredness, her wider family were for various occupational and geographic reasons unable to offer much practical support, and the summer holidays were looming: six weeks without even the respite afforded by six hours’ school, five days a week.  More people came and sat on Petra’s sofa and took notes.  And then… nothing.  No holiday clubs.  No respite care.  No suggestion of what support might be available or forthcoming.  Petra limped through the summer holidays, feeling increasingly hopeless and desperate.  Things came to a head of sorts at the first weekend of the autumn term, when the children, probably stressed after a week of lessons, ran amok.  Petra phoned the emergency social work team and an adult social worker came out to see her the following week.  A friend from her internet group sat in on the meeting and it was agreed that Petra needed a multi-disciplinary team to help her co-ordinate the many health, education and social care professionals involved.  She needed help to care for the children and get them out to school on time, and above all, she needed respite care for the children so that she herself could get some rest.  But organising those things would be the responsibility, not of the adult social work team, but of children’s services.

So yet again, nothing happened.  Half-term arrived, and once more, there was nothing for Petra.  She was offered a meeting with an organisation that runs parenting skills courses and ‘child behaviour support’ programmes, but when she attended, was told it was an obviously inappropriate referral as they had nothing relevant to offer.  No practical help.  No care for the children.  No rest for herself.

I have to admit I am baffled.  How can a household containing four disabled people, including three young children with disabilities, and a fifth person with a serious health condition, get no social care at all?  Why, when the Authority has been ‘involved’ with the family for years, does Petra have to keep going on the same weary round, knocking at the same closed doors?

Why is Petra, as a learning-disabled adult, not entitled under the Care Act to support that will promote her well-being in respect of her personal dignity, her physical and mental health and emotional well-being, and her domestic, family and personal relationships?  Why has she never been offered advocacy services?  Waking night care?  Weekend and holiday respite?  Short breaks?

Why are the children, all of whom have a genetic condition that in nearly every case causes learning disabilities alongside communication and health problems, not all acknowledged to have Special Educational Needs as defined by Section 20 of the Children and Families Act?  Why has no-one from the Authority supported Petra to get EHCP provision for her son?  Why is the genetics service refusing to make any referrals for the baby before December?

Petra, according to her internet friends, is at the end of a stretched-to-the-extreme and frayed-to-snapping-point tether.  She is trying very hard to do it right, but she can’t manage some of the things that have been suggested, like applying for Direct Payments.  Last weekend, they say, she was talking about asking to have the older children taken into care.  Her friends persuaded her to call Social Services’ out-of-hours line again, and once again she got no immediate help… but the following day she got a call from her GP, saying that he had been contacted by the service and told she was unwell and mentally unstable.  Petra, furious, shamed and frightened, assured him that it was ‘just because she had been a bit tired’, got off the phone and back online and swore that was the last time she would ever, ever ask for help.

Unless someone can suggest a way to sort this out fast and effectively, I’ve a nasty feeling that the next time her Authority’s Social Services department hears from Petra, will be when she shows up with her older children, their suitcases and a speech along the lines of, “You’ve been telling me for years that I should do better and don’t need help.  Well, I can’t and I do.  Since you’re so clever, it’s your turn to see how you get on. Let me know how it goes.”

Who could blame her?  I am generally a fit and healthy person; I have just one disabled child, who has high medical needs and learning disabilities but is mostly well-behaved; and in spite of all that, some days I am on my knees.  I can’t imagine looking after three children with disabilities, two of whom are bouncing off the walls 19 hours a day, never mind doing it all as a person with a disability myself.

And then what?  In ten years’ time, will both the children be in, or on their way to, ATUs?  I wouldn’t bet against it.  Yet I would equally put money on it being avoidable, if  just a little support were put in to keep the strains on this family at a manageable level.

That no help is forthcoming is chokingly, nauseatingly shameful.

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.

The Ministry of Tragic.

Tags

assessment, fiction, institutions

Good morning, Ms. Parsley, and welcome to St. Mungo’s Mental Elf Hospital Trust.  Perhaps you’d like to tell us a bit about yourself?

“My name is Citrina Parsley and as you know, I’m applying for the post of Witch in Chief.  I always wanted to work in the Elf Service – my father was a Healer and my mother was a Fizz-Tickle Therapist – so after doing my degree at Hogwets College of Bitchcraft and Bollockry, I applied to Nollege College, to do a course in Wizmanagement (Healery).  In the holidays, I got myself an internship in the Department of Stealth.  Well, the Department of Stealth and Total Obscurity, it was, then, and after that I had two years on the Ministry of Tragic’s MsManagement training programme.

“Then I spent five years Pottering around various projects while wearing a badge that I had Charmed to display a variety of fancy-sounding titles, before skipping overseas to hone my msmanagment skills somewhere nice and remote.  Here, I had overladyship and msmanagement of all magical and non-magical operations within the coven: goading two dozen disciplines to deliver enchanting sorceries for pea-Knuts. My work saw a vast increase in the numbers of victims of magical misfortunes arriving at our door, so I arranged for the construction of a monstrous maze to manage patient flows and stymie new arrivals.  I also planned new buildings and worked with the stoneraisers, the Chief Wizard and Healers to plan the new Almshouse (including futurology and service transmogrification) for the agreed amount of Galleons.

When I came back, I did a year as a Sorcery consultant – working with all the top Adminwizards of the Almshouses and Covens in my area to source saucers – and then I landed a plum role at St. Werburgh & St. Walstans, redisorganising the entire establishment of what were acknowledged as the most disorganised dungeons in the country.  By means of Polyjuice Potion, I impersonated the Chief Wizard both internally and externally during this period.  I led and managed all the magical disciplines, properties and accoutrements, plus conjuring, transmogrification, sorcery development and Paracelcian msmanagement.  I created a new management clique in each area, to control conveyance and transmogrification through staff capacitation alongside implicit imponderables.

“My next move was to community magimedicine – providing the vanguardium leviosa for thousands in the magical community and msmanaging millions of Galleons.  I stuck that for over three years until a better opportunity came up in the Hufflepuff Herbology Foundation Trust, which in turn led to me to the position of Witch-in-Chief at Slytherin Fountain Elf Trust, where I’ve been for the last five years.”

Thank you for that.  Is there anything else you would like to tell us?

“I was awarded Witch Weekly’s Most Charming Coiffure of the Year.”

You’ve brought your academic certificates with you but we’re having a little trouble with this Gothick printing on the Hogwets diploma – does it say your degree was in Healing?

“No.”

Oh.  Definitely not Potioneering – is it Herbalism?

“No.”

Could you help us out a little, here, Ms. Parsley? 

“Leylines.”

Leylines?  Leylines.  Well, that’s, er, certainly an unusual route into the Healing sphere.  With a Healer father and a Fizz-Tickle therapist mother, it might have been expected that you would have studied Healing or a related discipline yourself, rather than geomancy?

“Well, of course you’re a Healer, aren’t you Doctor Flssstfckmnst?  I know all about you, He Who Cannot Be Pronounced.  Just like my father, all, ‘You’ll never amount to anything, Citrina, if you don’t get straight O grades. Can’t study Healing with E’s, you know.  They may call them Exceeds Expectations but I call them not good Enough.’  Even when he didn’t say it, I knew he meant it.”

Would you like a tissue, Ms. Parsley?  Well, if Healing wasn’t for you, did you not consider one of the auxiliary professions?  Herbologism, say, or Potioneering or Fizz-Tickle Therapy like your mother?

“What, and have Dad snarking at me the way he did at my Mum?  No thanks.  Anyway, I showed him.  So what if I only got A’s?  My grades were Acceptable rather than Outstanding, but who wants to be an outlier?  My degree may be in leylines, but I’ve had literally hundreds of Healers working for me, and if I felt like it, I could make ’em widdle their drawers with fear; I had the power to hire, fire, or petrify.  Haha!  How do you like them apples, Dr. Daddio?  And once I’m Witch in Chief here, you’ll say, How High?, Mr. Boring Chairman, when I say Jump, or I’ll turn you into a frog!”

Fascinating.  Tell me, Ms. Parsley, do you really think you are here for a job?  Don’t you remember you were brought here suffering from self-induced Delusionaria Grandiosa and this is your admission interview?

“I’m admitting nothing.  And I’m not staying here if I’m not going to be in charge!”

Come, come, Ms. Parsley, you’ll find your time here will be much easier if you just resign yourself to undergoing treatment.

“I’m not resigning.”

***

The Internal Refugees.

Tags

assessment, ATU, autism, institutions, true stories

This time last year, 17-year-old Tianze Ni was living happily with his parents in Fife.  He has autism and learning disabilities and attended a special school.  Then he hit the teenage developmental/existential crisis that derails so many adolescents, and in the absence of any suitable placement, was escorted by police to Stratheden hospital in Fife and admitted on 28 April 2014, for what was supposed to be a one-night-only stay prior to a Tribunal hearing on the 29th.  He never returned home.  Stratheden was not suitable as a placement either; indeed, it transpired that nowhere in all Scotland was there an establishment that felt able to cater for Tianze’s needs.  The Scottish NHS made the decision that Tianze should be referred to an assessment and treatment unit in England.  After the Tribunal, Tianze was sent in May 2014 to an ATU in Middlesbrough for an assessment period that was to last at least six, but no more than 12 weeks.  He has been there ever since.

Over the summer, there was talk of finding a residential school for Tianze, but it hasn’t happened.  Part of the trouble seems to be that Tianze isn’t responding to treatment – quite the reverse.  He is endlessly miserable, begging to come home, composing a song about how much he misses his home and his family and singing it to his mother at every opportunity.  He expresses his frustration in destructiveness and doesn’t trust the staff; with good reason since he knows fine well that the people in charge tell lies, starting with the one about ‘only one night’ in Stratheden and going on with the ‘maximum 12 weeks in Middesbrough’.  Since he was sent to Middlesbrough, Tianze has been so unhappy and angry that he has begun to self-injure.  It seems impossible to find anywhere else to take him on while he is self-harming, but until he gets out of his present environment, he will almost certainly be unable to stop himself.  Classic ATU Catch-22.

So for 8 months, Tianze’s parents, Nina and Clinton, have been making a weekly 400-mile round trip, which takes 12-14 hours on public transport, in order to visit him for the permitted two hours.  Sometimes a visit has been curtailed or cancelled without warning for some deemed infraction on Tianze’s part of a hospital behaviour policy that he does not understand and has certainly never signed up to.  The Nis are worn out and their business is suffering.  Their petitions to various Scottish Health Ministers have got them nowhere.  They have had enough and have decided that they can no longer make these long trips.

They have not, however, abandoned Tianze.  Instead, they have abandoned their home of ten years and their adopted country of Scotland, upped sticks and left the Kingdom of Fife for the borough of Middlesbrough, so that they can be near their son.  If ever anybody has been forced by authority into becoming internally displaced persons, it is surely the Nis.

And if ever anybody wanted an exemplar of unconditional parental love, the Nis again provide it: they have given up all that they spent the last decade building, purely for love of their son and to try to do the best they can for him, in appallingly difficult circumstances.  They, and Tianze, deserve better than to be arbitrarily chased from pillar to post with no permanent home in prospect.  They shouldn’t be turned into refugees.

***

***

Impolite and Stupid.

Tags

appropriate vocabulary, assessment, institutions, NHS, reputation management, true stories

Dear Service Manager (Paediatric Department) Outpatient Treatment Hospital,

Thank you for your letter informing me of the date and time assigned for Grenouille’s annual ‘teen MOT’, the one that comes as a free bonus for having to attend one clinic or another every few weeks.

I know, because I have assiduously cultivated good relations with and a sympathetically listening ear for the staff at the Hospital, that these annual stocktake appointments are a logistical nightmare for the paediatric service.  They are much longer than normal clinic appointments, and involve rotating staff off the wards and routine clinics to do the extended battery of tests and evaluations.  If a patient fails to show up for one of these appointments, it is a huge waste of staff time, effort, and resource.

I wonder if anyone in the Hospital has considered that the assessments are pretty hard on everyone else, too?  As you will know, the kids have to be fasted, so many parents dread the day – persuading a stroppy teenager that they really mustn’t have the breakfast usually required to transform them from growly misanthrope into something vaguely resembling a human being, is a tough challenge.

As I know staff are also well aware, some children, after years of hospital contact, stop acquiescing to blood and other tests, develop medical phobias, treatment resistance, and hospital refusal, making the parents’ task that much harder.  And whereas one could, if push came to shove, pick up a screaming 3-, 4-, or 5-year old and carry them, kicking and biting, into a treatment room, one is on a hiding to nothing trying to do that with a hefty 13-, 14- or 15-year-old.  Or even a less than hefty teenager, if they are being ear-bleedingly vocal about their disapproval.  Adolescence is often the time when children become less compliant.  I invite you to consider the idea that there is a limit to the level of force that parents can legitimately apply.

Nevertheless, I wouldn’t dream of missing G’s annual appointment.  It’s a valuable early-warning system that allows us to scope out the current state and trends of G’s health, with a view to heading trouble off at the pass if anything looks like it’s going off-track.  If that means I have to put in a month of preparation, discussion, soothing, meltdown-management, and answering endlessly repeated questions, I will, because G needs this oversight.  It has to be said, though, that in the scheme of things, G is – so far, touch wood – pretty damn compliant.  Yes, we go round and round the same loop until I’m half-deaved with it, but G does understand why the tests are important, and accepts that sometimes we have to do things we don’t like, for our own good.  Given that, I’m prepared to cultivate patience and let G check over the questions and answers as many times and as often as necessary.  At the same time, I can deeply sympathise with parents who face bigger difficulties, because what I face is enough to drive me three-quarters nuts occasionally.

So when the annual appointment letter arrived, for such-and-such a day at such-and-such a time, with lots of pleas in bold reminding parents that they must fast their child from midnight and need to bring these bits of information and above all, please, to CONTACT US NOW TO REARRANGE THIS APPOINTMENT IF YOU CANNOT ATTEND on the date given, I put the date into the diaries – mine and G’s – and pulled the second sheet of paper out of the envelope to see what else we needed to know.

As I expect you will remember, dear Service Manager, since it was issued in your name, the second letter was much shorter.  It could, I think, only fairly be described in vulgar parlance.  It was, not to put too fine a point on it, gobsmacking.

It told me, in two terse paragraphs well sprinkled with capital letters, that G ‘must attend the Annual Appointment, in line with Hospital and Paediatric policy’ and that if I failed to produce G at said annual appointment, we would be ‘further discussed and … referred to the Child Safeguarding Team’.

Permit me to inform you that I consider this a gross insult, and a piece of profound stupidity on your part.

Perhaps you’d care to check, but we have never, to my recollection, missed an appointment with Outpatient Treatment Hospital.  We’ve arrived late, on the days when the traffic has been more than usually snarly, and we did once rock up a month early when the hospital had bumped the appointments to allow for staff holidays, and I hadn’t kept track of all the changes.  But we don’t miss appointments, and – if you care to delve further – G’s routine monitoring results are the sort that have your medics grinning broadly and high-fiving.

“Oh,” said an acquaintance to whom I mentioned my fury, “Ignore it.  It’s just a standard letter, they’ll send them to everyone because children are involved.”

She meant well, but it’s precisely because it’s a standard letter that I am so <expletive deleted> angry.  That letter tells me that OTH’s default position – your service’s default position – on parents, is that they are careless, shiftless, culpably negligent and potentially criminally dangerous wastrels until, and even after, they’ve proved themselves otherwise.

It says that your service believes parents will only do right by their children if coerced by threats.  That you consider you as professionals care more about G’s health, than I and G’s father do. That as parents, G’s Papa and I are, in your eyes, automatically suspect; that unless you’ve threatened and bullied us about it, we cannot be trusted to be doing the best – or even enough – for G.

I do not see why we – and why I in particular as, to adapt your own jargon,  the main hospital-facing parent – should have to take that sort of insult from what is still supposed to be a public service.

It’s not as though this is a one-off.  Over the last decade-and-a-bit, it’s been absolutely relentless: from the people who asked how G ‘slipped through the net’  – meaning how come, Kara, you didn’t have an abortion, like a sensible person; to the officious ignoramus in a white coat who told me that G’s failure to grow was my fault for breastfeeding (‘you’re suppressing G’s appetite’) when in fact G has a metabolic condition that meant growth wasn’t going to happen until treatment began; to the LA who were complete bastards about providing appropriate education (‘if we provide G with what you’ve asked for it will deprive other children’) although I hadn’t asked for anything other than what was a statutory obligation to provide – and if budgets are not adequate, it’s not I that anybody should be browbeating about it; to the docs who say G is a fascinating case and whose principal interest seems to be the potential G represents for career-enhancing papers; to the little shits who think it’s funny to taunt Eldest that his sib is ‘a spaz’ and ‘a retard’; to the big shits like Ricky Gervais and Frankie Boyle who think it’s clever to do much the same to profit from paying audiences; to this latest two-fingers.

Everybody has a point where they crack and I’ve reached mine.  It’s unfortunate for you that you happen to be at the point where ‘shit treatment of parents’ and ‘my tolerance limits’ intersect, but you put yourself there by treating parents shittily: your letter is not acceptable and you need to be told, so that you can stop doing it.

In any case, I don’t see how this is useful or sensible in any context other than administrative arse-covering (‘here’s proof we recognise our safeguarding obligations and do something about them’).  The normal, proportionate action would be to send a letter to people who have missed annual appointments, explaining the possible consequences.

In my opinion, such a letter should also *first* contain some helpful and empathic suggestions about how the team can help if the family is finding management of the child’s health difficult, rather than simply whacking in such a threat of referral to the Social.  As I know your staff are well aware, children with G’s health conditions often have problems complying with what are very intrusive and onerous treatment / lifestyle regimes, especially as adolescents.  Poor test results / needle phobia / disordered eating / hospital refusal in the children doesn’t necessarily mean parents are abusive or neglectful.  It means they and their child need support. Understanding and support, not suspicion and threats.

Besides, the annual assessment is just that – one day in a year.  It provides useful information to guide treatment, but the thing that makes the real difference to the child is the day-to-day care from his or her parents.  If parents are struggling with giving that care, the Health Service sure as hell are not going to make it easier by menacing them with child protection procedures.  People who are criticised instead of supported tend to turn avoidant.  This extraordinarily discourteous and foolish letter might be just the thing to push a struggling parent into thinking, “This is all too hard; why am I bothering?”, and from there into giving up trying.  And if parents do give up, will the OT Hospital retrieve and shoulder the burden of that 365-days-a-year care?  Of course not.  Here’s a thought for you and for your paediatric clinicians: in combating the effects of complex health conditions, parents are your, and your patients’, allies.

I know the ‘fighting ill-health’ metaphor has its detractors, and I recognise its limitations.  Nevertheless, I’d like to stick with it for a few minutes, and draw your attention to this delightful little publication, originally issued by the War Department in Washington, and reprinted by the Imperial War Museum:

The contents are a brief outline of what a GI might expect to find when he went from ‘a country at war’ (America) into ‘a war zone’ (Britain).  It reminded him that while there was nothing wrong with being proud of his own country and considering it the best in the world, he had to allow for the fact that other nationalities had the right to be equally proud of their country and that even America could, and had, learned from Britain, the ‘cradle of democracy’.

It pointed out that while Britain might appear shabby and unkempt to eyes from the States, the fact was that every Briton, uniformed or civilian, ‘housewives in aprons and youngsters in short pants’ had in effect been serving in the front line for years, ‘enduring more high explosive in air-raids than many solders experienced …. in the last war’.

Most of all, it wanted the American serviceman to understand that if he behaved in a way that alienated a Brit, he was doing Hitler’s job for him, making it easier for the Nazis to divide and conquer.

The take-home punchline that the War Department wished to impress on every American serviceman was a single sentence, which is repeated in the text and at the end:

It is always impolite to criticize your hosts;
it is militarily stupid to insult your allies. 

I think the the analogy holds up for the Health Service and families.  Clinicians and parents have common cause in keeping ill-health at bay, but it is families, not clinicians, who live 24/7 in the war zone.  Highly-trained professionals have much to be proud of themselves for, but so do families who keep on keeping on without recognition or reward; and any clinician worthy of the name knows that there is much that professionals can learn from families.  While medical personnel may provide a constant trickle of treatment along the lines of lend-lease, and sweep in for the crises that are the medical equivalent of the D-Day landings, it is families who defend the everyday ramparts of care and deliver the barrages of medicine.  Clinicians draw up plans for defensive lines of diet and therapy regimes, but it is families who construct those defences in practice and keep them in repair.  It is families who do the ARP watch at nights, sleeping with one ear open for a monitor alarm rather than a ‘Moaning Minnie’ siren; who ‘make do and mend’ because having a child with complex disabilities in a family limits the opportunities for career pursuit and lifetime family earnings.

Discourage families, and all you are doing is to make it easier for a child’s condition to get the better of their health; not, I am sure, what you set out to do.

 To quote the Instructions again: ‘Let your slogan be:’

It is always impolite to criticise your (child) patients’ families;
it is clinically stupid to insult their parents.  

Sincerely,

Kara

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.