Thanksgiving.

Tags

Commemoration, family, kindness

I’m usually pretty good about sending my many American friends Thanksgiving greetings.  Didn’t happen this year – sorry, folks – because that Thursday was Uncle Mal’s funeral.  But the day was very much one of thanksgiving: for having had the privilege of knowing and loving a gentle and gentlemanly man who lived his long life with kindliness and in gratitude, acknowledging and enjoying his happiness to the full, striving hard and conscientiously for the wellbeing of those around him, and bearing his troubles with fortitude and dignity.

Apart from Brianna’s girls, the only representative of the youngest generation at the funeral was Wee Cousin.  Schools these days, especially secondary schools, seem to hold dim and obstructive views of pupils taking a day off for family occasions.  Times have changed since Auntie Gen’s funeral, when our secondary schools were pleased to grant time off for the purpose, but it was thought slightly odd of my mother to bring my then-primary-school-aged younger brother.  Mum felt strongly it was important for my father, as he bade farewell to his sister, and for my uncle and cousins, as they took leave forever of their wife and mother, to have the support of their whole family.  She also believed – rightly – it would be important for my brother to be able to say a proper goodbye to his beloved Auntie.

However, my children were required to stay in school, so preparing for Uncle Mal’s funeral was a major operation in our house.  The car needed to be thoroughly checked over, the route planned.  I phoned Shelagh to ask what dress code she would like us to observe.  I co-ordinated with my mother and siblings about transport – trains for the boys, cars for the girls – and lunch.  The children’s Papa had to curtail what should have been a week-long business trip on the Wednesday, in order to work from home on the Thursday so that he could get G and Eldest off to school in the morning.  I wouldn’t see them all day, as I would have to set off at half-past ungodly o’clock a.m., in order to have plenty of time in hand in case of traffic incidents.  I cooked four meals on Wednesday in order to see everybody through in my absence.

Grenouille had to be primed.  This was probably the most difficult and delicate task of all, as G was torn between wanting to come and wanting to go to school (especially as illness and hospital appointments have already knocked out a good week’s worth of school this term).  Add to that being upset about Mal, being upset because I am grieving, and being upset at missing an event at which cousins would be present, and I’m surprised we managed to get through with only a couple of collapses: one at school which meant a missed lesson and one fairly spectacular explosion at home.  But by dint of explaining exactly what would happen, and precisely when, G was on an even keel by Wednesday bedtime, and I could turn my attention to the last detail: music for the journey.

Although I sing constantly, I don’t often listen to music nowadays.  I’m not a person who can study or write to music; I find it a distraction.  I listen to it during my sporadic attempts to level Mt. Laundry (the day Eldest became old enough to iron his own shirts was, I regret to say, one of my personal high points in my mothering career) and on long, solo drives.  The trip to see Mal in hospital had been fuelled by a brass-laden selection from my Stax/blue-eyed soul collection, but I felt this time needed something quieter and more contemplative, so it was all what could be loosely termed ‘modern folk’.  Something that would keep me awake but but calm, particularly if members of the Middle Lane Residents’ Association were out in force on the motorway.

Music was a big part of the day; we are a family with a number of musicians and singers amongst us.  Mal’s favourite spiritual for the entry of the coffin.  A classic children’s hymn at the beginning and another of Mal’s favourites before the Gospel.  One of the hymns from Mal and Shelagh’s wedding; and a rousing, joyful one as the celebrants and the family processed behind Mal for the last time, to the church porch, where the committal was performed at the door, so that nobody had to watch the coffin depart.  During the Eucharist, Brianna sang the ‘Sanctus’, solo, from high in the chancel, her beautiful warm, clear voice without a tremble as she gave her Dad a last gift.  I was so proud of her, my brave baby cousin.  It’s hard to realise that she is about the age that Auntie Gen was when she died.  And strange to realise that Shelagh has been married to Mal for longer than Gen was.

Blended families will always have a lot of adjusting to do; it’s a constant, lifetime’s work.  While being utterly devoted to Mal, Shelagh has always been more than considerate towards us – Gen’s brother’s family.  To maintain warmly friendly relations with one’s husband’s first wife’s relatives is a great accomplishment and one Shelagh has undertaken graciously.  I would have liked to have sung something for her, but it didn’t feel appropriate to offer.

The wake was a protracted affair, and it was pitch dark and spitting rain by the time I left.  Negotiating the snarl of rush-hour traffic around the city that I needed to circumnavigate in order to get to the motorway was exhausting.  Almost as soon as I got on to a clear three-lane highway, I realised I needed to pull in at the first service-station I came to; where I parked in the darkest, quietest spot I could find, put the seat back, drew my coat over me, and fell asleep for an hour.

Then I fired up the CD player and drove steadily home, arriving just as the last song on the last disc in the stack started.  Shelagh, this is the song I would have liked to sing for you, as a duet with Brianna.

With love and thanks, Kara.

***

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Seven Shades of Shite.

Tags

#justiceforLB, coroner, preventable deaths, Sloven Health

1) In your Assessment and Treatment Unit, don’t assess or treat.  If a patient is a fun person, you can forget about their patient status.   Don’t support their routines – remember, you are here to promote their flexibility, independence and choices.  Unless it’s their choice to leave, in which case remember to keep the doors locked and don’t let on to anyone outside the Unit what the patient’s preference is.  They can’t choose just anything – they must learn to pick from the choices they are offered.  But do remember to do helpfully disorienting things like repainting the rooms of patients for whom order and familiarity is a vital support.  Heap their belongings randomly onto cupboards.  Shrink-wash their clothes and don’t trouble yourself to make sure that the ones they get back from the laundry are the same ones they sent in.  That way they will feel the same as the other patients; it will help them fit right in.

2) Because you are, you know, professionals and therefore omniscient (or as near as makes no difference), don’t bother to take a proper history from the patient’s previous carers.  They’re only family.  Exclude them as far as possible and if by some mischance you are obliged to grant them access, make them jump through arbitrary hoops to get it.  Quoting the patient’s right of self-determination and manipulating the patient’s exercise of said right can provide hours of harmless fun.  If, having gained access to the patient, the family carers subsequently try to raise any concerns with you, downgrade and dismiss them.  You know so much better than they do.  Remember, family carers are likely to be over-involved and unable to see the patient’s best interest clearly.  It is your duty to treat them as the main obstacles to the patient’s progress.  It makes it so much easier to dump blame where it ought to belong if anything goes wrong.  Co-morbidities are not your problem.  They are not what you are there to Assess and Treat.

3) Assume that nothing will go wrong.  Risk-assessment is a tedious process and can distract you from vital paperwork.  Don’t worry about checking that safety and resuscitation equipment is operational.  As long as it’s ticked off on the check-sheet, the actual state, or even presence of the – what was it you called it again? Oh yes, the defibrillator battery! – is an irrelevance.  When you get a nasty surprise like a patient drowning in one of your bathtubs, make sure to document that resuscitation was provided in line with policy and procedures.  If you can ship the patient out of the unit on life-support, then the death will not have occurred on your watch and it will not, nohow, in any way, be your fault.

4) When the patient’s death is certified – elsewhere, well done! – nip in quick and loudly proclaim that this death by drowning was due to ‘natural causes’.  It is natural to be unable to breathe when a person has been submerged for up to 15 minutes.  Water is a natural substance.  Therefore the death is natural.  QED.  If an independent review finds that actually the death was avoidable, try to keep the report private.  Instead, you could send out a letter telling the (dead) person how you are going to manage their information.  If that doesn’t work, make the report’s release as late as possible.  After 6pm should do nicely.  By the next day, all sensible people (and news outlets) will have ‘moved on’ in line with your recommendations.

5) If the report fails to sink without a trace, turn your attention to your deceased patient’s family and friends.  A graduated approach is recommended here.  Start with patronising them.  Referring to patients’ parents as ‘Mum’ and ‘Dad’ is a good start.  Tell them that you understand what they’re going through (see point 2, omniscience, above).  Suggest that they move on.  If that doesn’t work, try harassment.  Pester them for meetings.  A face-to-face meeting should let you annihilate the threat with your superior knowledge.  If that fails, try innuendo and smearing.  It’s maybe not a good idea to suggest directly that they are linked to (unsubstantiated) harassment of staff, but putting them in the same sentence as a non-sequitur mentioning the alleged harassment should do the trick.  Put on a sad face and talk about how disappointed fellow-inmates, sorry, patients, were to be excluded from the funeral.  Ignore the fact that the patients were welcome, but that your organisation did not make the arrangements that would have allowed patients to attend without the (understandably) unwelcome Unit staff.  Say that you were willing to kiss and make up, and parade your hurt at being rebuffed.  If you’re still not coming out on top, escalate to level ‘bullying’.  Don’t take no for an answer.  Even if your Chairman tells you to stop, don’t give up.

6) If that still doesn’t get rid of the awkward, ungrateful buggers, don’t give them another opportunity.  Stock up on cartridges of black ink so that you can redact entire pages and documents to a uniform ‘starless midnight’ hue. Don’t forget to give the heads-up to other organisations that you circulated those documents to, so that they toe your freedom-of-information restrictions line.  What’s that?  You didn’t, so they didn’t?  Oops.  You may have to resort to the nuclear option – barefaced lying.  Oh dear.  You already did, and the unredacted documents have shown you up?  Hmmn.  Double oops with brass (neck) knobs on.  May be time to go quiet.  Stay under the radar.  Naturally, you will keep on surveilling any public-domain information about them, while stoutly denying you are doing any such thing.  Why would the fair use provisions of the Data Protection Act apply to you?

7) If you find yourself in a situation – such as, ooh, lemmesee, a coroner’s court – where you can’t keep schtum, get lawyered up.  Seriously lawyered up.  There can be no such thing as too many lawyers for you.  You won’t have to fork out for it – the taxpayer, bless them, will cover it for you.  You know it makes sense – those insects facing you are not entitled to any legal support, which is like, totally fair.  After all, they are taxpayers themselves, so why would they want to go against the legal representation to which they are already contributing?  Then try some of your tactics above on the coroner.  It doesn’t matter if you contradict yourself in court.  Remember, the important thing is to conceal that you don’t have a leg to stand on.  Tell the coroner what he should think and how to go about his business.  He will surely appreciate having the benefit of your omniscience and won’t dare to back his professional judgment and tell you to sling your hook.  Of course he won’t.

How’s that working out for you?

Charts, Charters and Chancers.

Tags

#justiceforLB, (un)accountability, coroner, inquest, PR spin, preventable deaths, Sloven Health

I’d almost forgotten this long-ago attempt to get into writing, but one summer when I was down from University, and had had no luck finding gainful employment, I interned for a (long-defunct) weekly music paper.  I seem to remember getting my travel expenses up to Town paid, and a minimal allowance for lunches, plus payment-per-line on record reviews.  The paper’s offices were a cramped suite up a narrow staircase in an old townhouse somewhere in central London, with desks jammed together in the middle of the limited floor space, and apart from me – the only female thing in the establishment – were inhabited by rather geeky, would-be-cool guys with unfashionably long hair who wore a dated uniform of jeans and freebie band/tour T-shirts.

I don’t even remember which day we went to press, but I do remember that on the day preceding press-day, I had the task, unwanted by anyone else, of ringing round a long list of local radio stations to ask for their most-rotated discs over the previous week, in order to compile a ‘radio playlist Top Twenty’.  In the days before computerised spreadsheets, it was a long-winded, tedious, and frankly rather pointless task.  I ran down the long list of radio station phone numbers and called one after another – “Hello?  It’s <paper name> here, ah, calling for your playlist Top Twenty?”

Sometimes the person at the other end just didn’t have time for me; sometimes they would rattle off a list of song titles so fast that, since I didn’t have shorthand, I didn’t have a hope in hell of keeping up.  I would scribble down initials and then have to go back over the lists after hanging up.  Sometimes I wouldn’t even know what the songs were.  By mid-afternoon I would have a deskful of lists, none of which was ever in complete agreement with any other, so that I had to work out the weighting for the final compilation – 20 points for a number 1 slot, 1 point for a number 20, add ’em all up and arrange numerically by cutting the totals list into single-song strips to reshuffle on desk until I had the final arrangement.  Copy down, type up, present to editor.

It didn’t take long for me to realise that since not every radio station responded, and since the chance of a given station responding on a particular day depended entirely on who was answering the phone that week, the playlist chart was hardly scientific or accurate.  After a while, I’d phone maybe half a dozen stations, with a good geographic spread (these were the days when local music scenes varied markedly from north to south) and then… well, basically make it up.

The guy who’d done the job previously, a curl-topped skinny drink of water whose name eludes me since he was mainly remarkable for his encyclopaedic knowledge of percussion instruments, gave me a cynical grin.  “Worked out how to do it, have you?”  His grin widened as I guiltily tried to spread out my few pieces of paper to conceal the acres of wooden desk-top.  “Don’t be daft, the boss’d far rather you got in well ahead of time than hold him up by making sure to include Radio Shetland and Isle of Wight Radio.  Finest journalistic tradition, that is, creating a story from a minimum of facts.  Hit your deadlines, that’s the thing.”

I was reminded of his cheerfully cavalier attitude when looking at the HSJ (Health Service Journal) Awards last week.  They, like my chart compilations, are all about making yourself look good:  organisations self-nominate for awards, and the judgment criteria seem have all the ethical clarity of those that contributed to my long-ago decisions about who was to get that no.1 playlist slot.  An acquaintance who works in events organisation tells me that these days, fan conventions are some of the biggest business in the ‘events’ world, contributing significantly to media companies’ income streams, but that trade-press beanfeasts are also highly profitable.  I bet.  George Julian has done a cracking job of looking at how well HSJ does out of its awards and how much taxpayers’ money gets diverted annually to EMAP publications: not for providing professional update information, but for organising a black-tie knees-up-cum-ego-massage-session.

HSJ is the publication that dubbed Sloven’s CEO, Katrina Percy, ‘NHS Chief Executive of the Year’ in November 2012, calling her an “outstanding leader with real drive and energy”, who demonstrated “a style of leadership that engenders self-motivation among staff.”  Ms. Percy’s award acceptance speech included the self-deprecating phrase, “We know that leadership directly impacts quality of care.”  Despite her leadership engendering a level of staff self-motivation at Slade House insufficient to prevent a learning-disabled patient with epilepsy from drowning in a hospital bath in July 2013; despite the fact that only yesterday Sloven was slapped down by the coroner in that case for trying to persuade him that the death was ‘natural’ and therefore the inquest didn’t need a jury; despite an arm’s-length list of other failures in Learning Disability provision in the last three years; despite all that – Sloven’s Learning Disability division is thinking of ‘reviewing its position to assess whether there is sufficient evidence of effective change to pull together a submission for the BMJ Awards this year’.

Hmmmn.  I’d say most recent evidence suggests not.

Although there is a case for recognising good practice, I don’t think that commercial awards are the way to go in public service.  People don’t need fancy dinners and the adulation or envy of people from up and down the land to feel that their work is recognised.  When I was working for a local council, a colleague in the Community Care Department, which organised things like day-care centres and meals-on-wheels, put in a submission for a Charter Mark, which in those days were, if I remember rightly, competitive awards.  She did most of the documentation in her spare time, and shot a little video of the service facilities and activities, complete with self-scripted voiceover, original soundtrack courtesy of an improvisational bass guitarist friend, and credits that were scrolled up a computer screen by dint of Sally crouching out-of-shot and pressing <line down> on the keyboard.  The Charter Mark team was much impressed with her enterprise and came and inspected the Department, which was eventually awarded a Charter Mark.  Sally and her colleagues were formally congratulated by the Chairman of the Council at a full Council meeting, and got to put the Charter Mark on their buildings, vehicles and stationery for the next three years.  They didn’t need a dinner in London to know and feel that their work was recognised and appreciated.

After a while, Charter Marks stopped being a competition and became a benchmark award – a guarantee that the service was up to the required standards.  Then, it seemed, they were quietly done away with.

It wasn’t until I did a bit of research on Friday that I learned that they still exist, but since 2008 are called Customer Service Excellence Awards.  Pfft.  Customer Service Excellence sounds like a Marks and Sparks aspiration, an award for retail and commercial kudos, not for public service.

However risible the Citizen’s Charter may have been, however box-ticking its mentality, I’d far rather have public-sector awards that evoke something of Magna Carta, government obligations, citizens’ rights, and public service, than ones that are predicated on generating revenue for media companies’ coffers.

That way, if it becomes manifestly evident that a Charter award was made on inadequate or spurious grounds, or was otherwise undeserved, maybe it could be removed, instead of allowing failing services to carry on using their ‘awards’ as PR patches for their tattered reputations.

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

Family, Friends and Farewells.

Tags

Commemoration, hospital, kindness, NHS, preventable deaths

Phone call from Rosa.  After rallying to the point of sitting up and making jokes with family who visited the day after I did, Uncle Mal developed breathing difficulties and died quietly and peacefully at mid-morning, with his wife and children surrounding him.

In spite of the pain that preceded it, a good death.

 x

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9

Since kindness doesn’t come in the units easily measurable against Key Performance Indicators, I’m quite sure the hospital staff, who helped to make Mal’s good death possible, won’t collect any glitzy-dinner awards for their work and care.

In some ways, that’s quite right – kindness should be a given, a basic condition of doing the job, not bolted on to win gilt-spackled certificates and PR kudos.  It shouldn’t be something so remarkable that it has to be singled out and spotlighted.  At the same time, creating the conditions for a good death, the conditions that help a family feel comforted in their mourning, is, on each and every occasion, a supreme achievement that deserves recognition and gratitude.  This is going to be a short post today, because besides all the other things I need to do before this evening, I need to write to the ward staff to thank them for the way they looked after all of us, me included, while Mal was their patient.

Kindness can’t be bought, and true care can’t be paid for, in the currencies that organisations use.  Kindness won’t appear on any Trust balance sheet or in a hospital’s end-of-year report.  Yet from the point of view of the person lying in the bed, and the people sitting in the chairs alongside, it’s one of the hospital’s most important assets.  If it goes missing, the consequences are everlasting and unforgivable.

I know the Sloves aren’t listening to this.  They should be.

The Friends and Family Test.

Tags

institutions, kindness, NHS, true stories

A hard, heavy-hearted weekend that involved a solo round trip of over 400 miles in a single day, in order to spend half an hour with my Uncle Mal.

Uncle Mal has been living with cancer for more than two decades. “It’s got the key to the door”, he joked on the 21st anniversary of his diagnosis.  It is a type of cancer that is described as ‘indolent’, unlike the rampant cancer that over thirty years ago carried off Mal’s first wife, my Auntie Genia, within three months.  Notwithstanding its alleged laziness, after the initial round of treatment, Uncle Mal’s cancer spread from its soft-tissue origin into his bones, where it has been indolently busy ever since, very gradually crippling him.

My cousin Brianna phoned my mother to say that Mal had broken a limb.  He’s in hospital, but nothing could be done about the break except to splint it.  With the cancer riddling his bones, surgery wouldn’t help Mal and he would in any case be unlikely to survive the anaesthetic.  The splint was purely for his comfort.  The bone is almost certainly not going to mend itself.

I phoned Shelagh, Uncle Mal’s second wife, whom he married a few years after Auntie Gen’s death, to ask if Uncle Mal would be up to a visit.  Since Mal has been housebound, I’ve always tried to make a point of going to visit whenever we’ve been in their neck of the woods.  I’ve also tried to make a point of keeping visits reasonably brief, so as not to upset Shelagh’s routines or overtire Uncle Mal.  Shelagh said a visit would be fine, if it was just me, so I set off early on Sunday morning.  It was a long, unexciting drive, mostly on motorways and dual carriageways, with just a few country roads at the far end, and I arrived in time to have some lunch before the 2-4pm visiting hours.  I intended to leave by three at the latest so that I would have a little light for the start of the return leg.

The ward didn’t have the buzz-in doors that I am used to from children’s wards, but the staff desk was just inside the entrance, festooned with large notices asking you to state whom you were visiting.  “I’ve come to see Mr. Mal MacKay”, I said.

The nurse looked puzzled.  “What name?” she said, running her finger down a list.

“MacKay,” I said.  “Mal MacKay?”

“Oh, you mean Iain“, said the nurse.

Obviously not someone who was directly involved in his care.  “He’s always called Mal”, I said.

The eldest boy in Uncle Mal’s family has always been Iain Malcolm, time out of mind, and the tradition has been to alternate the name that is used in each generation.  Uncle Mal’s father was Iain Malcolm known as Iain or Nink and Mal’s grandfather Iain Malcolm was Colm or Callum, but there will be no more Iain Malcolm MacKays.  My cousin Iain is childless; Brianna’s children are all girls, and after her own brush with cancer a few years ago, Brianna won’t be having any more babies.

Perhaps their idiosyncratic nomenclature was one of the things-in-common between Uncle Mal and my father when they were teenage friends, sixty-something years ago.  My father, like Mal, never went by his first given name, except on official documents.  He didn’t use his full middle name either, come to that; also like Uncle Mal, he was always known by a diminutive of his second name.  Whatever it was that led to them becoming friends, also led to Mal meeting my father’s sister, Genia; which in turn led to a lot of other things, including Iain and Brianna….

The nurse broke in on my reverie by saying, “Well, he’s in side room 3.  Up there on the right.”

I had barely begun walking in the direction indicated, when a diminutive woman, trim in a ward sister’s uniform, skidded to a halt in front of me and said, “No visitors for Mr. MacKay.”  I must have done a double-take at her, because she said, apologetically, “He’s not at all well at the moment and his wife has said no visitors today.  Perhaps tomorrow.”

“I can’t come tomorrow”, I said, numbly.  “I’ve just driven over two hundred miles to get here and I have to leave in an hour or two, tops, because I’ve got to get back home to my children tonight.  But if Uncle Mal’s taken that much of a turn for the worse… well, if he’s too ill, he’s too ill…”  I trailed off, feeling my face crumple.

Sister looked uncomfortable.  “Are you the relative who was coming from Xton?” she said, naming the town where we used to live, which was only half the distance away.

“I live in N— now,” I said, “But I did get in touch with Shelagh yesterday to ask if it was OK to visit, so I expect she means me.”

Sister looked even more uncomfortable.  “Mrs. MacKay is aware that you’re coming and she’s sorry she couldn’t let you know before you got here but she’s said no visitors.  We have to respect her wishes.”

“Of course”, I said.  “Well, um, if you get the chance later, maybe you could pass on my love to Mal?  Tell him it’s from his niece Kara.  Chris’s eldest.”

As I turned and began to walk blindly back towards the exit, tears distorting my vision and making hot-then-cold tracks down my cheeks, Sister ran round in front of me again.  “Look,” she said.  “Mal’s having some treatment at the moment.  Go and get a cup of tea and come back in half an hour.  Maybe you can at least speak directly to Mrs MacKay for her to pass on the messages.”

“Are you sure?  I wouldn’t want to upset Shelagh, she must be under so much strain already.”

Sister’s face twisted oddly, almost as though she might start crying too.  Then she became nursily brisk.  “I’m sure.  Off you go.  Café’s on the ground floor.”

The café was a chain-coffee-shop concession, all striplighting and massive paper cups with plastic lids.  Nothing resembling real tea was to be had for love nor money, certainly nothing acceptable to a confirmed tea-jenny like me.  I had a brief vision of my lovely mother-in-law, the darling, who used to issue already-sugared-and-stirred mugs of builders’ best to my father-in-law and husband, and then present me with a tray bearing cup and saucer, milk jug, napkin, and an entire teapot of Darjeeling or Assam to myself.  I couldn’t face cardboard-flavoured hospital tea and I rarely drink coffee, especially not when I’ve two-hundred-and-odds miles’ driving in prospect.  I left the café and wandered around the car-park, watching semi-sodden brown leaves flap feebly on the tarmac in the stiff breeze. The light was already beginning to seep away.

When I went back up to the ward, I was directed to the day-room to wait for Shelagh.  It was obvious that no patients spent time in there: a table in the corner, flanked by a couple of chairs, held a few dog-eared magazines; a television with a sticky note proclaiming it to be out of order sat next to a mattress-less bed frame; the other corner of the room was a clutter of dripstands and digital sphygmomanometers on little trolleys.

After a few minutes, Shelagh came in, apologising for not having been available earlier.  “Mal’s very poorly, and there was a bit of a crisis.”

“No need to be sorry.  I understand how ill he is.  How are you?”

Shelagh blinked, then half-smiled.  “I feel much better than I did.  I just love him so much, I don’t want him to suffer any more.  Did you know he was on the orthopaedic ward in St. B’s  (the specialist cancer hospital in the nearest city) for the first ten days?” I shook my head.  “The way they looked after him, I couldn’t have asked for better, but when they decided they couldn’t do anything specific for him and said they would send him back here to be close to home for palliative care, I was absolutely frantic.  My old Mum – you remember her, don’t you? – she was on the elderly care ward here before she died, and it was dire.  Awful.  Dirty, and the staff were rushed and rough.  And you know Iain’s wife Rosa?  Her mother was on the same ward afterwards and if anything it was worse.  Rosa’s mum was in a terrible state – left dehydrated and unwashed.  As you know, Rosa didn’t get on with her mother and barely spoke to her for years but when she found out what was happening, she went ballistic – said she wouldn’t leave a dog or her worst enemy in those conditions.

“So when they said they were sending Mal back here, I just broke down.  I was begging them to keep him in St. B’s – I didn’t care that it was twenty-five miles away, as long as he was properly looked after.  I told them what I knew about the geriatric ward here and they told me not to worry – he would be kept within orthopaedics.  Of course, I was still terribly worried.  I couldn’t believe there could be that much difference between wards in the same hospital, but there is.  The staff here are amazing.  They say that they ask themselves every time, ‘What would I want if this person were my Dad, my uncle, my Grandpa?  How would I want someone I care deeply about to be treated?’  You can see it.  They have been wonderful.”

She paused.

“There’s only one nurse who’s been less than nice – she told me off for using the ward lavatory instead of going down in the lifts and right round to the front entrance to use the visitors’ lavatories.  I didn’t say anything, but I thought, ‘At my time of life and when my husband is so ill, I’m blowed if I’m going on a hike every time I need to spend a penny.’  Sister had told me to use that loo, anyway.  And later on, I had been doing some of Mal’s cares just before I left and she said “Remember to clean your hands before you go out!  Use the alcohol gel at the end of the bed!”  Like that, ordering me, you know, as though I haven’t been doing these things for Mal for years or was too stupid to understand the correct procedure.  I thought, right, that’s enough from you m’lady!  I said, ‘Thank you for reminding me to clean my hands before I leave.  Now please come with me to the desk because I want a more respectful nurse assigned to Mal.  And don’t you ever, ever, dare to speak to me, or my husband, in that tone again.’  And do you know what?  She looked at me and said, ‘Oh, I am so, so sorry’.  But I still asked for another nurse – and I got one.

“Everyone else has been lovely.  They are looking after us – me, and Brianna, and the children, as well as Mal.  Even little things, like telling us we could get a weekly parking pass.  We were paying every visit, and it’s three pounds for two hours – shocking, isn’t it?  Especially when you are here three or four times a day.  There are no notices anywhere telling you how to get a long-term ticket.  But the staff on the ward told us where the office was, and wrote a note so that we could get the other tickets refunded.  Well, the ones we’d kept, anyway – some of them had been thrown away by then, because we didn’t know, you see.

“They ask me how I want them to explain things to Mal – the upsetting things, you know – and they don’t discuss patients at the desk or in the middle of the ward . They take you into the office and shut the door when they need to talk to you, so that they keep confidentiality.  Do you want to come and see Mal?  You’ll be OK for a few minutes.”

Uncle Mal was half-sitting in an orthopaedic bed that could be positioned almost like a chair as well as in a flat position.  “It means they can change his position without him having to transfer to a chair”, said Shelagh.  Mal was very spaced out on opiates, but managed a few words.  “Oh, hello”, he said, a look of recognition crossing his features.  “This is … surprise.”  Then he nodded off for a few seconds and woke wheezing, confused and distressed.  Shelagh held his hand and stroked his hair.  “It’s alright, sweetheart, I’m here.  The doctor’s just getting you some medicine for your chest.  It’ll be better soon, darling.”

A healthcare assistant came in to do obs.  “So sorry to interrupt”, she said, pressing the alcohol-gel spout and rubbing foam over her hands, “But please can I just do your pulse and temperature, Mal?  I won’t try to do this thermometer in your mouth just now – are you all right if I put it under your arm?”  She waited.

“Arm”, croaked Uncle Mal.

“Thank you”, said the HCA.  She very gently pushed the blanket aside and positioned the thermometer and the pulse oximeter.  Thirty seconds later the machines bleeped and she removed them, deftly tucking the covers back.  “Thank you”, she said again as she left.  Uncle Mal closed his eyes.  I studied his face.

With his square jaw, cleft chin, high cheekbones, long-lashed brown eyes, straight nose, broad forehead and wavy hair, Uncle Mal in his twenties had the film-star looks of a matinée-idol cast to play Superman. Even now, in his eighties and desperately ill, he remains a handsome man, although, scrunched up in bed as he was, there was no impression of his once-powerful physique – the height, the broad shoulders, deep chest and long legs that gave him significant advantages as a fly-half and a swimmer.  His looks are helped, of course, by his having kept his own teeth, and a full head of hair – even if it is now silver-white instead of dark as it used to be.

The door re-opened quietly.   “Hello Mal”, said the newcomer.  “It’s Dr. Jess again, with your medicine.  Are you ready for this now?”

“Pl’se”, said Uncle Mal.

“I’m going to trickle it into the side of your mouth with this syringe, if that’s OK with you”, said the doctor.  “I don’t want to choke you, so I will only do a drop at a time.  Is that all right? “

“Mmn”, said Uncle Mal, eyes still shut; and for the next few minutes, the doctor dripped the medicine in, while Uncle Mal swallowed laboriously.  When it was finished, Uncle Mal leant back, apparently exhausted and murmured “Sorry such nuisance.”

The doctor leant over the bedrail and took one of his hands in both of hers. “You’re no nuisance, Mal”, she said, softly and warmly.  “It’s a privilege and pleasure to help look after you.”

Uncle Mal raised his eyelids with an obvious effort, then a ghost of his lady-killer smile appeared as he registered her blonde, willowy, barely-thirty prettiness.  He tightened his grasp slightly and pulled her a little closer.  “Say that again”, he rumbled in a low register with distinct overtones of the old come-hither.

The doctor gave a little laugh that sounded both surprised and flattered.  Shelagh smiled indulgently.  “He always did know how to butter up the ladies,” she said. “Didn’t you, you terrible flirt?” Uncle Mal raised his eyebrows at her, a faint gleam in his eye, then fell back to sleep.

The doctor smiled at Shelagh and said, “He is such a lovely man.  So gallant, in all senses of the word.  Makes my day every time.”  She tiptoed out.

A short while later, I decided it was time to leave.  Mal had woken again, but trying to talk was too much of an effort for him, so I kissed him and said I hoped to see him soon.  I handed over the little gifts from Grenouille and Eldest to Shelagh, and as Shelagh’s mobile rang with a call from Iain  – “Oh, thank you for calling back, yes, the nurses are saying you really need come today if possible”, – I slipped away.

Outside, the blonde doctor and a man in blue scrubs were waiting, holding a clipboard of paperwork and a tray of medical equipment.  “Is Mrs. MacKay on the phone?” said the woman.

“Yes, she’s just taking a call from Mal’s son.”

“In that case, we’ll wait a little longer.”

“Thank you for waiting just now”, I said.  They both made don’t-mention-it gestures.

“We don’t interrupt family unless it’s clinically necessary”, said the man.

“This isn’t urgent, you having time with your uncle is much more important”, said the woman.

“Well, thank you anyway.  I appreciate your consideration”, I said, and aimed myself through the now blurrily-swimming doorway, towards the lifts and the smeary dark outside.

I’ve always found those ‘How likely would you be to recommend this healthcare facility to friends and family?’ questionnaires faintly embarrassing.  I mean, if you need a hospital, you need a hospital and you are unlikely to have much say about which one you end up in, so what’s the point?  And the survey-monkey generic nature of the questions means that the collated data are so unspecific that they are unlikely to contribute meaningfully to decision-making.

So I still think the questionnaires are pointless.  But if I knew somebody whose relative needed orthopaedic treatment in the area, I would recommend that they stamp, scream, shout and move heaven and earth to get their relative’s aftercare there, on Uncle Mal’s ward, even if they had their surgery somewhere else.

Maybe not next year, or even next month – places change as people move in and out.  But this week?  Definitely.

Common Trials: Out of the Mouths…

Tags

appropriate vocabulary, institutions, learning disability, local authority

Had trouble getting Eldest out of the door to school this morning.  Not because he was up late, or dawdled over shower and breakfast, or even because Grenouille was causing a holdup (a not-infrequent obstacle to progress).  He needed to get something off his chest before he was ready to go and focus on academics.  So I walked round the house with him, listening, as he packed his bag, tied his tie, gelled his hair, wiggled his feet into his shoes, and talked non-stop.

Yesterday an outside speaker had come to give a talk for the weekly PHSCE afternoon.  She explained that her job as a senior social worker involved supporting people who had suffered abuse and hate crimes.  In her allotted hour and a half she would, she said, be focussing on the groups most likely to suffer abuse and crime, but that did not mean, she said, that such things did not happen to other groups, and she named some of the minority groups whom she would be touching on in passing, but not talking about in any depth.

Seventy-five gruelling minutes later, she invited questions.  The very first one was along the lines of, “You said that you would be giving us an overview of the topic but you haven’t mentioned any of the minority groups in your talk.  What proportion of the total do those groups constitute, and do they come in for broadly similar abuse to the majority, or is there a qualitative difference?”

The speaker had lots of facts and statistics at her fingertips.  The minority groups accounted for about 15% of the reported incidents.  It was assumed that this broadly reflected the proportions in the unreported totals as well.  She gave figures for the minority groups and some (gruesome) examples of incidents.  The data suggested that on the whole, those minority groups were slower in coming forward and suffered worse injury.  However, it was necessary to focus on greatest need, which meant on the majority.

You don’t get away with assumptions in front of E’s schoolmates.  They may be kids of varying abilities, but it’s one of the great strengths of the school they have all, without exception, been rigorously trained in ethics and encouraged in critical thinking.  The questions multiplied.  “Why do you think it is reasonable to assume that the unreported proportions are similar to the reported ones?”  “If people in the minority groups take longer to come forward and have suffered worse injuries, doesn’t that suggest your assumption is dodgy?”   “How do you justify measuring ‘need’ by incident numbers, not seriousness?”

I think the speaker may have got a bit flustered at this point, because she gave replies that acknowledged that the data were arguably flawed, and that the seriousness of minority abuse was probably discounted, but then said that this ‘wasn’t important’.  I gather a bit of a hubbub promptly broke out and the Head of Year diplomatically decided that there wasn’t time for any more questions, as he needed the last five minutes to thank the speaker for her time and input.  As a result, E never got to put the point he was burning to make, which was that calling the experience and needs of any particular group, minority or majority, ‘not important’ was, basically, outrageous and unacceptable.

I agreed with him, but asked him to remember that because of his family situation, he has extra sensitivities.  I wondered whether maybe the speaker was trying to say something about ‘statistical significance’, couldn’t find the precise words she needed, and so, under pressure, used an inappropriately vague one?

E glared at me.  “If she couldn’t find the right words, then she should have just shut up.”

I tried again.  “Or perhaps she meant to say ‘not paramount’ and got mixed up?”

E still wasn’t having any of it.  “Somebody at her level would only say the wrong word if, somewhere at the back of her brain, she was thinking it”, he said, flatly.

He pulled his keys off the hook and half-turned on the doorstep.  Suddenly, he looked tired, sad, and much older.  “I know I’ve got extra sensitivities.  But as far as I’m concerned, the moment she let that ‘not important’ out of her mouth was the moment she stopped being a social worker and started being a git.”

Pants.

Tags

#justiceforLB, #justiceforNico, appropriate vocabulary, institutions, Sloven Health

Grenouille was officially diagnosed at around 2 1/2 as having a severe language impairment.  From the outset, G’s receptive language has been way ahead of speech production. Listening to stories has always been a favourite activity, and G has a remarkably wide vocabulary, but still finds some talk dealing with abstract concepts baffling.  G prefers to focus on the concrete and the practical, and has no patience with the unnecessarily high-faluting, considering it a waste of time and breath.  An adult indulging in persiflage will be slapped with a stern, dark-blue stare from under drawn brows, and the flat question, “Wassat s’posed to mean?”  And after whatever-it-is has been conveyed to G in plain terms, the even sterner question follows: “Whyn’t you ‘splain it p’operly first time?”

 After a decade of intensive speech therapy, G’s utterances remain difficult for some people to follow until they become familiar with the idiosyncrasies of cadence and construction.  In spite – or perhaps because – of the difficulties that G has in producing long sentences, what comes out is often almost poetically economical and inventively fresh.

Today’s Monday-morning breakfast table was enlivened, after a half-term week of wearing comfy jammies and slouchy trackie bottoms, by G getting up and treating us to a hip-wiggling dance, accompanied by pulling and plucking at the school uniform’s sharply-tailored nether garments.

“What on earth is the matter, G?”

“Pulled my pants and trousers up too tight.  They’re gypping me with wedgies.”

Bless.

For some things, however, G prefers to use a brief, one-size-fits-all response.   To those who use their brains for context, as well as their ears for sound when listening, it means a lot more than the single word (or lone syllable) conveys in isolation.

For example… well, here’s an extract from Southern Health’s September 2014 minutes:

‘7.19 Simon Waugh observed that the Trust had previously reported good progress in relation to reducing out of area bed usage, and queried the reasons for the recent deterioration. Lesley Stevens, Director for Mental Health & Learning Disabilities, noted that this was a multi-faceted issue, but that there was significant focus on working through various solutions.’  (My italics).

I had been fizzing about the pointless platitudinousness of this and decided this afternoon to run it by G.  It took some explaining of the Chairman’s question: what ‘out-of-area beds’ were and why it was important to the Trust to keep the use of such beds as low as possible, but G understood that having to buy space in a place far away would be expensive (“like staying in a hotel when we go away on holiday?”) – a major concern for Sloven if paragraphs 7.21 and 7.22 are anything to go by – and could think of reasons why people would not want to be further from home than they had to (“like when I was in Admitting Hospital and Papa and E could only visit every other day because it was so far?”).

So then we tackled the Director’s response, and here we came utterly unstuck.  I could explain the meaning of each word so that G could understand it, but string them together and the overall meaning of the statement remained a big, fat zero.

“Wassat s’posed to mean?” said G, scowling.

“I’m not sure,” I said.  “What do you think it means?”

G frowned even more ferociously.  “Means nothing.”

“And what do you think of somebody giving a nothing answer to an important question?” I said, pretty sure of what the answer was going to be.

“Pants!”

Indeed, sweetheart.  The sort that gyp you with wedgies.