NHS communication problems: 'We’re at the mercy of a system that doesn’t work'
Illustration by Tracy Worrall
7 min read
Andrew Brightwell was the co-author of a think tank report showing problems with NHS communication are disproportionately affecting women – and leaving a terrible toll on long-term patients. He explains its findings
Julie Inglis says: “I feel helpless. I feel like the situation is hopeless. I really was in a really bad place last year, because there didn’t seem to be any possibility of anything improving.” She is speaking to The House from her home in north-east Scotland. But she is at the frontline of a problem the NHS has in communicating with patients and staff across Britain.
Since Inglis had an operation 23 years ago, requiring the removal of ribs, she has been in chronic pain. A stroke later forced her retirement from the Ambulance Service – and over that time her health has worsened, with fibromyalgia and chronic obstructive pulmonary disease (COPD).
Administrative blunders and problems with IT can all erode time that staff have for patients
Yet she says – aside from her GP, whom she speaks of in glowing terms – only once in all her trips to see doctors has anyone read her history enough to know about the source of her pain.
“It would be lovely to see someone who had taken the time to read your notes,” she says.
I first spoke to Julie about her experiences in 2021, when she was a member of charity Engage Britain’s People’s Panel for Health and Care, and I was its in-house reporter. The panel was a citizens’ assembly, before Sue Gray made them fashionable.
The 100-strong panel, picked to represent Britain in microcosm, included people from all walks of life. It listened to testimony distilled from more than 700 people including those with direct experience of health and care.
The panel then decided on three priorities it felt could best improve Britain’s health and care services.
While it was no surprise that the panel opted for tackling workforce crises in the NHS and social care, it also decided “poor communication” in our health service demanded urgent attention.
“It wasn’t my initial choice,” Julie says. But she adds that because panel members heard so many experiences of fragmented care and communication problems, they discussed their own, and it helped to propel the issue up the agenda.
Engage Britain then worked with panel members, groups of long-term patients and GP practice staff to draw up policies. These recommendations are contained in a report that I helped to write: “I love the NHS, but…”: Preventing needless harms caused by poor communications in the NHS. It was published last year by Demos – following its merger with Engage Britain – and in partnership with the Patients’ Association and the Practice Managers’ Association.
Our report’s polling from autumn 2023 found that 55 per cent of the public report experiences of poor communication from the NHS in the last five years, rising to 61 per cent of women. And, while roughly equal numbers of men and women have struggled with issues such as appointments, waiting for care, or been on the wrong end of IT and administration failures, a gender gap opens up for other experiences.
We found that 29 per cent of female respondents report “finding it difficult to know where to turn for help”, compared to 19 per cent of men. And 32 per cent of women report “being dismissed or not taken seriously” in treatment, compared to 18 per cent of male respondents.
While these statistics lay bare a problem, I believe patients’ own experiences give us a better understanding of how separate issues compound each other and may then have a much more serious impact on individuals.
As a long-term patient with complex, multiple healthcare needs, Julie says she has racked up a range of poor communication experiences that take in the administrative blunder, the casual oversight and dismissive behaviour. These experiences, she says, can be exhausting, upsetting, and deeply frustrating.
Often, she says it’s not clear that anyone has thought through how someone with multiple conditions can negotiate the system. As an example, she recounts receiving a letter from a consultant telling her he wanted her to see a surgeon following an MRI scan in 2021 – which showed “wear and tear on my C6 [spinal disc].” She says: “It left me so worried, looking into what it could be.”
After nine months and now into the next year, an appointment came through. But after an uncomfortable two-hour drive and a long walk to find the right room, it was over in five minutes. “It was just something they could have told me over the phone. Why don’t they ask? I was so angry.”
Julie says that these problems are no individual’s fault. She talks about the NHS’ administration as “all done by computer” without evidence of human oversight, while appointments are “hit and miss”.
Sometimes patients have to do detective work. Julie’s fellow panel member, Jenny Bevan, said her hiatus hernia was first diagnosed by doctors two years before she was told about it – a fact she only learned by asking to see her notes. Her condition would eventually require an operation. “I am sure if it had been communicated to me then, things could have been so much better,” she said.
Similar concerns are shared by staff in our report, who report knock-on impacts of poor communication piling on an already unsustainable workload. Administrative blunders and problems with IT can all erode time that staff have for patients.
We quote an anonymous member of staff at a hospital saying: “You’ve only got a certain amount of time and something has to give, and you don’t want to compromise your care of patients. But how do you fit everything into that time, when each year you’re being asked to do more and more within that short amount of time?”
We’re the most vulnerable people and we’re at the mercy of a system that doesn’t work
Some staff, instead, are burdened with the impact that poor communication has on patients. A manager for a GP surgery once told me that one prospective new hire was given a day to try out working on reception, only to return to say: “I can’t be told that many times in a day how useless I am.”
Nonetheless, it’s the gender gap that might be the most worrying aspect of our findings. If women are more likely to experience issues of poor communication, then the impact on patients like Julie, who by virtue of their complex needs are using the system all the time, is likely to be much greater.
“We’re the most vulnerable people and we’re at the mercy of a system that doesn’t work. When you put conditions on top of conditions, and unless you’re lucky enough to have a good GP, no one can put together the whole picture – and that’s what is so frustrating,” Julie says.
The polling also shows that many more women than men report feeling anxious or stressed as a result of their experiences. This is backed up by research published in February by the Fawcett Society, which finds that 60 per cent of women in the United Kingdom believe their health issues are not taken seriously. And 57 per cent have had a negative experience with a health professional.
The NHS, of course, is not blind to its communication problems. NHS England, for example, publishes extensive guidance on how to manage patient communication. While in Scotland the Charter of Patient Rights, under the Patient Rights Scotland Act, sets out in black and white the expectations patients can have for clear communication.
And all three of Engage Britain’s recommended potential solutions are directly inspired by efforts in Britain’s health systems. Care co-ordinators are clinicians who can oversee the care of long-term patients with complex needs, like Julie. Care navigators – non-clinical staff such as receptionists who are trained to help ensure patients coming to GP surgeries are oriented to appropriate treatment – exist, too. While the third recommendation – rationalising and bringing together a variety of useful services into the NHS app – recognises that some of the best interventions are using smartphone applications to help patients with their care.
Nonetheless, these are all efforts to help patients navigate a complex system. With an ageing society we can expect more patients to develop complex needs – and require more help. As Julie puts it: “As we get older, we get sicker. How many older people are out there suffering with these problems?”
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