How to Soften the Blow of Rationing in NHS Healthcare.
We all know that rationing is inevitable in publicly funded healthcare systems where demand far outstrips resources.
How should doctors and nurses soften the blow of this uncomfortable phenomenon?
I had reason to think on this question twice in the last fortnight. Firstly, having been discharged from hospital where I had received six units of blood 10 days previously, my blood test showed that I had bled out all the blood I had been given and that I needed to go to hospital again. Because I had received such a generous amount of blood 10 days previously, my haemoglobin, the amount of oxygen carrying capacity in the blood, was not as dangerously low as it has been in the past, but was still low enough to require admission and transfusion.
My GP phoned me with the blood result at 5 pm, and told me that she would arrange an ambulance to take me into hospital. I quickly jumped into the shower (I have a phobia about turning up the hospital dirty), stressing out all the while that the ambulance would arrive while I was hosing down. But it didn’t.
I had also reminded the GP that because I live on a second floor flat with no lift, there are 50 or so stairs to negotiate and I have to be carried up and down them in a stair carrier operated by two ambulance personnel. With a prosthetic leg on one side and the other leg shattered and enclosed in an ilizarov frame, I can’t do stairs at all, either going up or down.
After waiting around four hours, I phoned to make sure an ambulance had been requested, and was told that it had been requested as a ‘routine’, not an urgent. Does anyone need to attend Accident and Emergency as a ‘routine’? It seems a paradox, a contradiction in terms. Nevertheless, I completely understand that someone with a heart attack or extra dural haematoma or someone unable to maintain adequate oxygen levels in their blood because of severe respiratory or cardiac disease should be prioritised over someone who can wait safely for a few hours. Having said this, to drop from a haemoglobin of 13 g/dL to one of 7.5g/dl in 10 days is quite alarming. If the doctors in the previous admission hadn’t been so generous, listening to my plea that I was transfused above the standard 8 or 9g/dl, I would have been sent home with a much lower haemoglobin, as I was from the orthopaedic ward, when I was sent out with a haemoglobin of 8 g/dL after an operation and major haemorrhage. If my blood count after my last admission had been at the miserly 8g/dl it had been on discharge from orthopaedics, I wouldn’t have been alive to take the call from the GP. (My haemoglobin dropped from 13g/dl to 7.5g/dl from transfusion to next admission. If I had dropped 5.5g/dl from a starting hb of 8g/dl, my haemoglobin would have been 2.5 g/dL, which is incompatible with life.)
I should add that my own consultant in orthopaedics, Dr Jamal, is wonderful and attentive, kind and considerate and conscientious. It is only the revolting locum ortho registrar who was rude to me as I haemorrhaged for 13 hours and refused to call for help that I resent.
Incidentally, in most patients *without* active bleeding (ie not me), it is presumed that the patient will quickly make more blood cells after discharge if they have adequate iron, B12 and folate stores, so patients are often only transfused up to a haemoglobin of 8 or 9g/dl if not bleeding. I always receive an iron infusion on my gi bleed admissions. However, it takes a foolish doctor to limit the amount of blood given to someone with chronic GI blood loss and discharge them with a haemoglobin of 8 g per dl, knowing that they will lose half of this in in the next few weeks, as I kept informing the orthopaedic Locum registrar who refused to treat me for my massive 13 hour haemorrhage.
But back to the decision to call the ambulance as a routine, I’m sure it would have been fairly safe for me to wait a while before being admitted. But could my GP have managed my expectations? Rather than keeping me on high alert with adrenaline bounding through my system, couldn’t she have said ‘ I’m going to request this ambulance as a routine because this isn’t an emergency situation, and I don’t think it’s an urgent one either.’ I actually disagree with her on that, I think it was an urgent situation if not an emergency one. I could easily have bled more and died. Given that I hadn’t noticed any blood loss at all, and that I had lost half of my blood volume, assuming I was no longer bleeding was myopic. But I think not requesting an emergency ambulance was reasonable. I would rather emergency ambulances are reserved for those who may die if they don’t reach hospital within the next hour or two.
But if only my GP had told me this. If only she had said ‘ look, Leyla, it might be 12 hours until the ambulance arrives. Why don’t you relax, pack a bag for hospital, try and get a little bit of sleep?’
12 hours later, the doorbell went. It was a single ambulance woman. She didn’t have a stair climber or a colleague. She was lovely, and came in and took my blood pressure and saturations. After taking my history for about an hour, she said that she would phone ambulance control to get another paramedic sent over with a stair climber or chair for manual movement of patients.
I was so incredibly tired by this point, but she was perky and bright, and friendly and warm, so it felt rude to ask her if I could just lie down and try and doze until her colleague arrived.
Her colleague arrived about two hours after she did. This second paramedic did not speak to me at all, she simply started up a voluble conversation with the first paramedic, which didn’t end until I had been deposited at the hospital 40 minutes later. When I told her that I take my duvet to hospital with me because I’m always cold, she said she would come and get it after I had been taken down to the ambulance. To my horror, she dragged it along the ground and threw it on the floor of the ambulance. I quite obviously had an ilizarov frame with 16 needles piercing my skin, drilling through my muscle and sub cutaneous tissue, and inserting into the broken bones in my leg. Did she not realise the implications of infection?
But sometimes you just have to put up and shut up. I bit my lip. I was so cold that I was just grateful for my duvet being there.
The second paramedic’s sloppy behaviour was not directly due to rationing. Perhaps indirectly it was, if the chronic shortage of ambulance personnel meant a higher than normal workload with fewer breaks, and thus fatigue and sub-optimal service. I haven’t complained about her, and I don’t want to because the first paramedic was so caring and concerned. The second one just wanted to gossip to the first one about who they knew in common, and where they had worked.
The second example of rationing on this hospital admission came about when, around five days after admission, I found a very hard, craggy lymph node in the back of my neck. Any doctor knows that healthy lymph nodes are soft/rubbery. Hard ones are abnormal and should always be investigated.
So I mentioned the lymph node to the GI consultant on the Monday 5 days after I had been admitted. To my utter astonishment, she looked a little put out and then said ‘ that’s best dealt with by seeing GP after you’ve been discharged.’
I was dumbstruck.
If the hard lymph node was lymphoma or leukaemia or indicative of spread of a different kind of cancer, the many week delay in waiting until after I had been discharged in 14 days’ time (my procedure/ operation for gi blood loss had been scheduled for 10 days after that Monday and I knew they would keep me in for a few days afterwards to make sure I wasn’t bleeding from the operative sites) could have worsened the prognosis.
Even then, that meant two weeks until discharge. There would also be another long delay in seeing a GP since they are so busy, and then a further two week delay in being sent for imaging, even as an urgent.
And yet here, I was at the moment, scheduled to lie in my NHS bed for another 10 days, with absolutely nothing happening until my operation, and the consultant couldn’t, or wouldn’t arrange for me to have the lymph node imaged while I was in?
I fretted and worried. The following day, the registrar did a ward round with the SHO, and I told him I wanted a second opinion. I said that people with Scleroderma are more likely to develop lymphoma and other types of cancer than people without. I told him that I have been having night sweats (I have, but I put them down to hormones.) And for the past decade, I’ve eaten like a horse yet remained slim.