Which patients with which needs are leading the patient-led NHS?

It was the summer of 1992 when we first met. She was a retired nurse, aged 76, recovering from a heart attack. I was new to the practice, and we talked at some length. She told me about her work in the hospital, her children and grandchildren. And we talked about my experiences on the same wards and my growing family. She was checking out the new doctor, while I was putting into practice the “bio-psychosocial” approach drummed into us as we prepared for our college membership exams.

A few months later I was called to see her at home. She was short of breath and showing the first signs of heart failure. We talked about medication, investigations, or outpatient referral. She wanted as little “interference” as possible—preferably never to go near hospital again. We worked our way through various treatments and her symptoms improved a little. But gone were the daily walks to the baker or the newsagent—a few steps down the path became all she could manage. Nevertheless, she remained invariably cheerful, playing host to several groups of medical students, helping them with their “chronic disease” projects. I called in every now and then to monitor her progress on an ad hoc basis, yet she always managed to have a plate of sandwiches waiting.

We had been on life's journey together over 14 years

Over time her symptoms gradually worsened. Later she developed diabetes, predictably difficult to control. We controlled her blood pressure with tablets, which worsened her renal function. A statin lowered her cholesterol, but her liver function went haywire. Her blood sugar rose inexorably, despite triple therapy, so we switched to insulin. She lived with her beloved grandson who took over administration of her injections, but her H A remained stubbornly high. Beta blockers made her breathing worse and her warfarin had to be stopped after a gastric bleed. I continued to call in every month or two—there always seemed to be a new symptom or drug side effect to deal with. We tinkered with medication; introduced a nebuliser; and always had a good chat together, catching up on each other's families, exchanging photos. She ended up in hospital a couple of times but returned home after each admission full of determination to remain independent.

She is not the kind of patient who had the opportunity to fill in the “Your health, Your care, Your say” survey (www.nhs.uk/ yoursay) to inform the recent white paper on community care. But if she had been asked, I feel sure continuity of care from a practice where everyone knew her was infinitely more important than “instant access for routine care at anytime” that seems to drive the white paper. But then she was not middle-aged, middle class, and living in middle England. She rated the quality of her personal care very highly—from the reception team to the visiting nurses and general practitioners. I don't think her view would have changed even if she had known that her care fell short in many areas of the Quality and Outcomes Framework (QoF)—indicators for which GPs receive payments as part of their contract.

A few weeks ago she suffered another heart attack followed by a stroke, and never returned home. She died peacefully this week in a local “continuing care” bed, at the age of 90. We had been on life's journey together over 14 years—the epitome of what I had hoped and believed general practice would be about when I began my training at medical school. Last night I opened her computer notes to record a final entry: “Goodbye to a true friend—RIP [rest in peace].” There are no longer any flashing alerts highlighting our failure to control her blood pressure, her ischaemic heart disease, or her diabetes. But then a smile overtook my tears. It was in true character that this generous spirited woman turned all the red entries green by dying just before the end of the QoF year, when figures count towards GPs' payments under this scheme.

I am not sure, as I approach retirement in another 14 years' time, whether we will still be delivering this kind of care to our patients—quality that is very much appreciated but so hard to measure. Quality that means patients are looked after by “my doctors and my practice.” Sections of the population quite understandably want a very different model of access and availability. But this focus may end up seriously eroding the delivery of long term continuing care to the elderly and chronically sick. We are building our patient led NHS. However, sometimes I do wonder exactly which patients with which needs are actually in the lead.