Getting the care you need shouldn’t depend on being knowledgeable, articulate, and demanding

On 15 December 2017 my life was transformed. In seconds I went from Paediatrician to trauma patient, thanks to a car hitting me as I walked to work. Instead of leading ward rounds and clinics, I spent 11 days in a London trauma centre, recovering from a fractured pelvis, facial fractures, extra-axial cranial bleeds, a shattered proximal humerus and broken leg requiring a femoral pin. During my 10 weeks in a wheelchair I was unable to weight bear, and then underwent months of intensive physiotherapy relearning to walk. It gave me the opportunity to think, and realise how grateful and proud I am of the NHS.

However empathetic I thought I was before, I now recognise the impossibility of truly appreciating what matters to patients unless we ask them. Our imaginations just aren’t up to the task. Until I lived through this, I could never have understood some of the things I now do. Indeed, I have (painfully) acquired a wealth of new insights to draw on for my service transformation work.  

It’s not good enough to have systems that only work when patients protest. Despite my GP’s valiant efforts, data failed to flow between primary, secondary, and community hospital settings. And while perhaps things didn’t happen because of pressure on services, in part this was also due to inflexible and shortermist adherence to policy. We need rules, but not so that they suffocate staff’s caring and supportive instincts. For example, without me speaking up—something I could only do because I am medically knowledgeable, speak English, and confident—I would not have got the physiotherapy I needed, and I suspect I would not yet be independently mobile.

Knowledgeable advocates were important too. Day one post trauma, I was offered a cheese sandwich to eat. With a broken jaw this was tricky, but a visiting colleague helped locate the secret stash of hospital ice cream for me to slurp. It should have been obvious that I was hungry, but couldn’t chew. We have to find ways to empower all staff to really focus and act on the needs of the patient.

Not all my reflections come with a big price tag. I surprised myself by actively enjoying the five-bedded wards over a single room. I particularly benefitted from the companionship and support of fellow patients, some of whom were double my age. It also allowed me to observe care processes close up. Some patient colleagues needed help with eating. The nursing and healthcare care assistants valiantly addressed this. But I found myself wondering why we don’t encourage and support volunteers to offer this support instead? Is it concern over health and safety? It seems to me that thirst and hunger are risks in themselves, and that freeing up staff time for more complex tasks would outweigh any negligible risks. Helpforce are making progress here, and we need more of this.

Being confined to a hospital ward made it clear to me that visiting hours are outdated. Of course there are moments when patients need privacy, but these anachronistic restrictions place staff convenience ahead of patients’ need for the care and companionship of loved ones. Visitors improve health by supporting the patient and alleviating the long hours of worry or anxiety that inpatient stays can lead to. I’m not suggesting a fully open policy, but many units now have flexible visiting hours where patients can be visited by one or two family members or friends at any time. Recent efforts of the Chief Nursing Officer show this is feasible and acceptable—how long until this is the norm?

One particularly vivid memory will probably change my future practice the most. On day eight of my admission, a lovely nurse made the time to wash my hair, cunningly using a flattened bucket with a drain attached. This was not just a vanity exercise. As she rinsed away the blood and road debris from my hair, I started to feel human again. Now I reflect that I have I never asked a patient about support with personal hygiene while on the ward. The fact that my patients are children is not an excuse. This is something I will change.

So as I prepare to return to work I ask each of us working in the NHS to listen harder to the voices of patients and families whenever we can, and be more curious about their experiences and needs. I implore executive teams to review their volunteer arrangements, and to reform restrictive visiting hours. I ask clinical staff to focus on the little things that may not take long, but make the patient experience better. And let’s celebrate the NHS’s 70 birthday with a future where getting the care you need doesn’t depend on being knowledgeable, articulate and demanding, but where excellent care is coordinated and integrated around people’s needs.

Claire Lemur will be speaking at The Health Foundation Annual Conference on 22nd May. 

Claire Lemer is a consultant general paediatrician at the Evelina London Children’s Hospital. Alongside this work she is the deputy director of CYPHP, an innovative data driven public health focused system level transformation. She combines clinical medicine with medical management, service improvement and policy work. 

Competing interests: CL edits for Archives of Disease in Childhood and receives an honorarium. She used to edit for BMJ Quality and Safety. She is occasionally paid to speak on medical management.