, , , , ,

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 me 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.