On Friday morning, Mum was readmitted to hospital. She is 85 years old and vulnerable to infections, with a provisional diagnosis of leukaemia.
Having been discharged from the same hospital two days earlier, her temperature rose and so, following the guidance of her GP, she returned to the accident and emergency department of the local hospital. That's where the messages from family members begin.
Day 2: "M now needs feeding and drinks thru a beaker! Nurse said normal 4 chest infection. U shd c the state of her".
Day 4: M "seems better" and there is a prospect of discharge later in the week.
Fine, but no-one is talking about the leukaemia, which is scarier than the chest infection. An outpatient appointment to discuss M's care is still a fortnight away. On day 5 a patient advice and liaison person, initially so helpful, explains that M doesn't actually have a diagnosis. ("Utter rubbish" according to her GP, "the hospital diagnosed the leukaemia three weeks ago".) But, meanwhile, a new message:
Day 5: "Mrsa groin nasal cavity and in wound in rt arm". This has secured M a single room.
Infection control
By the time I see her on day 6 M is visibly poorly and we're into the infection control ritual of disposable gloves and aprons. We're also into the NHS complaints ritual:
Day 6: "I guess u will hav heard about my day! [Indeed I had: a phone call about alleged insensitive behaviour by a junior doctor] i made a formal complaint and as a result spent last 2 hrs with matron and then was seen by a registrar".
A pre-booked meeting with a reassuring senior house officer clarifies how all M's conditions - the chest infection, the MRSA, her skin troubles, a new sore under her arm and the all-important leukaemia - are being actively treated or investigated and that by early next week it may be possible to plan her discharge. It's the first sign of any coherent co-ordination.
Treading on toes
And light begins to dawn. I'd wondered why M was under the care of a rheumatologist: fine and decent doctors, but not generally known for their cancer expertise. But of course - patients admitted via A&E automatically come under the care of the physician "on take" at the time: in this case a rheumatologist. That's why the junior doctors are behaving as though M's in hospital for a chest infection. And the medical culture makes hospital doctors from one specialism wary of treading on the toes of another. They're experts, not co-ordinators. To make any real progress on the leukaemia we need to speak to the haematologists. Their empire is separate. Meanwhile M is getting sicker.
Day 8: "M v bad waiting 4 a blood transfusion! sister sd then she shd improve a bit hopefully".
Day 9: "Staff nurse 2 busy 2 tell us how M is this morn. I sd right il hav 2come n c4 myself then".
Day 11: "nthg been done re lump under arm. dr nt bn here 2day. Not eating at all tho i am bringing in food."
On day 12 I ring the hospital and ask for an update. A new doctor calls back, introducing himself as "FY1".
Skeletons in the NHS
"FY1?" I ask, confused. "Yes, foundation year one." Ah. How refreshing to speak to newcomers to the medical profession and observe how the doctor culture is being passed on intact. FY1 doesn't appear to have actually seen M, nor has he prepared for the call, yet clearly sees this as acceptable. He tells me how short-staffed the hospital is: his metaphor of a "skeleton service" seems grimly apt. He tells me he'll be able to answer my questions (How is she? What's happening?) by Friday, apart from the difficult one about the leukaemia. And so we lurch towards a third week in hospital, frustrated and concerned.
What happened next? Well, not long afterwards the consultant haematologist took personal control of M's care. He was overheard telling a colleague that the family had been asking questions, as indeed they had. They were challenging the effectiveness of infection control and trying more generally to make sense of what they were seeing. At one stage there was talk of simply discharging M, taking her to another A&E and starting again.
Day 13: "Had infection control nurse come 2 talk abt mrsa and their protocol. I sd fine bt staff nt doing. Why if they wash her do they use same towel? Why do drs take blood with no gloves? Why has she got same sheets as y day? Not enough staff n need proper training. Told by sister 2 many drs involved in M's case. Causes confusion".
Day 14: "M just offered tea or coffee. I sd but shes nil by mouth". Day 14 (7.20pm): "Operation [to drain the underarm lump] cancelled. No food available. What kind of hospital can't come up with a bit of toast? I'm going home to make some".
Day 15: "M v v sick 2day. On phone 2 gp finding out abt private operation if she is alive".
Care pathways
The lump was eventually drained and by that evening M was "on v good form and sat up in bed having cup of tea". By day 18 she'd recovered some of her feistiness and was picking up the mood of challenge before being eventually discharged on day 19, with a package of care designed to allow her to spend more time at home.
Reflecting on M's "care pathway" - and of course her care and this hospital may not be typical - there are two obvious conclusions. One is that the traditional culture of professional silos appears to be alive and well, at least within medicine, and care co-ordination remains an aspiration rather than a reality. The second is that, contrary to myth, any managerial pressure to use hospital beds more intensively doesn't seem to be forcing doctors into earlier discharge. On the contrary. If, by chance, your inner auditor is wondering about occasional gaps between messages, generally they reflect weekends.
Nothing much happens at weekends.
It all seems a long way from the Darzi vision.
No comments yet