Patients’ actual care pathways often differ markedly from doctors’ perceptionsBMJ 2013; 347 doi: https://doi.org/10.1136/bmj.f6728 (Published 08 November 2013) Cite this as: BMJ 2013;347:f6728
Seeing care through the eyes of patients is demanding and sometimes demoralising to clinicians, a conference at the King’s Fund in London on 6 November heard.
The clinician’s idealised view of the patient’s care pathway had little in common with the actual experience of patients, especially those with a chronic illness, whose pathway typically involved occasional brief encounters with clinicians separated by many days and weeks, speakers said.
Even acute interventions that cured a patient’s illness could consist of more sandwich than filling. At Alder Hey Children’s Hospital in Liverpool, the doctors Joanne Minford and Julie Grice looked at the care received by children with abdominal pain.
“We’d been quite complacent,” Minford admitted. “We believed we always put the child first.” But observation of actual patients showed that waits were long, care was inconsistent, diagnoses were delayed, and many admissions were unnecessary.
One patient was shadowed from her arrival at Alder Hey, after a GP appointment first thing in the morning and a referral to a district general hospital. She was finally seen by a surgeon at 5 pm. He said that she needed an operation but that there was no room on that day’s list, so she was sent home and returned the next day. She was operated on and discharged the day after. In a patient journey in which she had taken two days just to reach the theatre she had enjoyed just 1.5 hours of “touch time.”
Staff whose own children had been treated at the hospital responded to a survey with mixed messages. At worst, these were profoundly discouraging. One said, “It wasn’t as good as we got in India. But that was private. You can’t expect that on the NHS, can you?”
Services at the hospital have now been improved in line with what had been learnt. Staff created a Surgical Decision Unit for acute surgical assessment by “pinching” four beds from another ward. Pain management was improved, access to theatre sped up by faster assessment, and numbers of admissions reduced. As a result, 95% of parents now say that waiting times were as expected or shorter, more than twice the 45% before the changes, and 86% said that they were well informed, compared with 28% before. The proportion who said that their child’s pain had been managed well had risen from 48% to 100%.
Even patients who had developed considerable expertise and intuition about their condition found themselves ignored, said Charles Ellis, a non-executive director of East Sussex Healthcare NHS Trust. Ellis, after a 23 year career as an NHS manager, developed multiple sclerosis, lost the use of his legs, and in a crisis in 2007 was admitted to a hospital that he did not name.
“The scary thing was that despite knowing my way round the NHS I felt powerless to influence my care,” he said. “Whatever I would say wasn’t listened to, and that’s quite frustrating. I became well aware of how low morale at that hospital was, and it transfers itself to you. There were not many smiling faces.” He lost much weight.
He was rescued by two friends who visited him and were alarmed at his condition. They arranged for him to go to a rehabilitation clinic in London that provided everything the first hospital did not. “There was good team work, the staff were happy and engaged, and ward rounds were inclusive—I was asked how I felt.”
His discharge was properly planned and went well. “I was lucky in my friends,” he said, “but it shouldn’t be down to luck. I was an experienced manager in the NHS and known to be quite stroppy, but I couldn’t change the direction of my care on my own.”
Putting patients first, said Jocelyn Cornwell, director of the charity the Point of Care Foundation, was much more difficult than had been realised. “Patients and families have a radically different experience from staff. Staff genuinely want to feel they are doing a good job and have all sorts of defences against listening to what patients say or confronting things that don’t go well. Patients see everything, staff don’t.”
Mike Richards, England’s chief inspector of hospitals, told the conference that patients’ opinions and complaints were an important source of information that he would not ignore. A patient and public “listening event” is held before an inspection begins, and the views expressed are often strongly polarised, he said. “Complaints are very important, and they can direct us where to look.”
But he came under mild criticism from the Alder Hey doctors for publishing the risk scores that have informed decisions on the first hospitals to be inspected.1 The Hospital Intelligent Monitoring tools now used by the Care Quality Commission had put Alder Hey in a band of hospitals deemed to be at the highest risk.
Grice said that publishing this list had damaged morale at the hospital. Richards replied that he had tried very hard to make clear that the bandings were not a judgment on the hospital, which would not be made until it had been inspected. “But I do recognise there has been some fall out,” he said.
Cite this as: BMJ 2013;347:f6728