When the mobile phone leaps into life before 8am, it's usually ominous. Yesterday was no exception, with a text from my sister Amy: 'Tony has been in a terrible accident and is fighting 4 his life. Everyone pls pray 4 him.'
Once we feared the early morning phone call; nowadays it's the early morning text. Tony, who turned 21 in June, is Amy's youngest son, a motorbiking DJ who lives down south with his mother. Assuming she will be at the hospital waiting for news, I text back inviting her to call whenever she can.
It's been a summer of tracking family illnesses, mostly from 250 miles away and often through the medium of text. Two months ago Amy went over to Ireland to visit our mother, found her fragile and feeling low and brought her back to England "for some proper medical care". Amy's quest for treatment - and a diagnosis - has been tireless. The text messages betray her mounting frustration:
"Just 2 let u no mum worst. At a and e tday. Rash infected. Dr sd cant let it get any worst!" (3 August).
"How is it when in a and e she had v low white blood count 2 dangerous 2 kp in hospital as prone to infection. All they hav is tht she had allergic reaction 2 pills prescribed 4 fungal infection" (6 August).
"Told [by GP] not 2 go 2 a and e again or nhs direct! Visibly annoyed that we did but it was out of hours dr sent us there last saturday. gp ordered blood tests 4 munday apparently cant call hospital n get them. If u can help do because they seem 2 think past sell by date" (6 August).
"Mum much better 2day but rash driving her mad!" (8 August, 9.28am); "Changed again sleeping all morn going 2 gp 3.50 not right at all" (12.25pm); "Gp having sd bring her in changed his mind n just called saying don't want 2c her til Monday!" (12.30pm). Until, finally, following the Monday morning appointment, the message we all half-expected: "Is leukemia! Going 2 mass bk abt 11" (11 August).
The plea for help will be familiar to many who work in the NHS and therefore, are presumed to have influence. Or, at least, inside knowledge of how the system works. But this lack of co-ordination and the absence of good communication seem dismally familiar.
At 11am the phone rings. Clare, who's "babysitting" Mum while Amy is at the hospital, reports Tony collided with a van. Both legs and both arms broken, plus pelvis, nose and facial bones. Worries about loss of blood flow to one leg: he may lose a foot. He has been in theatre all morning and is expected to return to intensive care this afternoon, before transferring to St George's in a few days for specialist surgery on that pelvis.
Ah, St George's. A little while back I did some work on the funding of pelvic reconstruction, a complex and expensive procedure at which St George's excels. Back then the standard payment by results tariff didn't cover the true cost of the operation. So trusts threatened to stop offering it. The surgeons briefed World in Action. Cue hurried Department of Health intervention and there is now a payment by results funding loophole specifically covering pelvic reconstruction. Surgeons 1, Accountants 0.
The motorbikers' injury
The pelvis has two important functions: it protects delicate organs like the bladder and kidneys and gives the legs something firm to hang on to. Fractured in one place, it can knit back together. But break the pelvis in two places and neither of those important functions work. Reconstruction is needed. The most common candidates for the procedure are young people - older ones tend not to survive - who fall from high buildings or horses, or ride motorbikes. Imagine the effect of crashing one at speed into a solid object. Like, say, a van on the A23.
As I try to make sense of the day's events, the texts from down south are starting to fly:
"Stable broken leg pelvis both arms severed main artery in leg internal injuries" (12.03pm).
"They say not sure abt brain or spine til at least tmrw. Thank u kp praying. They say if survives up 2 a year in hosp'tal" (8.00pm).
"has bn stable overnt. He has hd a lot more blood. He opened his eyes a couple of times bt they put him straight bk 2 sleep. Hospital sd that he wont b able 2c friends 4 a couple more days. Kp praying" (7.50am).
The bit about seeing friends is as encouraging as the bit about a severed main artery was alarming. Tony may face a long road to recovery, but it's better than Cemetery Road, the cul-de-sac 19-year-old uncle Billy took in 1949 when he came off his motorbike.
Anxiety and confusion
So, different "patient pathways". Is there anything about these personal stories that carries a wider significance? Two conclusions spring to mind. The first is that, among all the other fears, anxieties and confusion, at least we haven't had to worry about the cost of treatment. The founding tenet of the NHS - medical care that's free at the point of delivery - remains liberating in times of trouble. Someone remind me of this if I ever start advocating co-payments, social insurance, rationing or any of the other dilutions of a proud 1940s principle.
The other is about Lord Darzi and "quality". Before recent events I'd been preparing to write about attempts to measure it and the importance of including, somehow, that responsiveness is hard to define but all too obvious when missing. Ever given up in sheer annoyance when trying to get call centre staff to address your problem? Sometimes we know quality by its absence.
It would be hard to fault the NHS's response to Tony's accident; but Mother still doesn't know what happens next with her illness. Amy's latest texts: "consultant will look at mums Friday scan results next wk n if we dt hav an appt by next thurs we 2 chase up w cont secretary." (13 August); "appt blood specialist 7th Oct! God" (15 August).
This doesn't seem consistent with cancer access targets but is all too consistent with "past sell-by date". Sigh. Perhaps quality is when it isn't always a struggle.