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Reasons for optimism in experience of care

Jocelyn Cornwell 04 May 2020

Amidst the profound challenges to patient care created by the Covid 19 crisis, some important signs of progress are emerging from the NHS’s approach to patient experience. Our founder Jocelyn Cornwell asks, Is this the systemic change to experience of care we’ve been waiting for?


Last week was NHS Experience of Care Week. Perhaps it’s odd to celebrate patients’ experience of care in the context of Covid-19, but I am hopeful that responses to the pandemic have brought good things for patients and families that might, just might, last beyond the crisis if we work on them.  Here’s three. 

1. National guidance on hospital visiting from NHS England 

It may be weird to start here, because the guidance actually suspends all visiting with immediate effect, which will cause patients suffering. Hospitals are frightening, lonely and boring, and for relatives to be the separated from a loved-one who is ill, is stressful.  

But, what I like is that the guidance includes an exceptions list for situations where patients may have one partner/visitor: end-of-life care, childbirth, children in hospital and, fourth on the list, where the patient has a mental health issue such as dementia, a learning disability or autism, and not being present would cause the patient distress.  

No-one has done more than John’s Campaign to raise awareness of the necessity of relatives being able to stay with patients who have dementia and delirium. The campaign has been hugely successful but pre-crisis there were NHS wards and hospitals that refused carers permission to stay with patients with dementia, and the campaign was still having to lobby hospitals one by one,  even ward by ward, to get results. Granted, the new guidance is about ‘visiting’, not ‘staying with’, but in acknowledging that patients with mental health issues have special needs it is taking a firm step in the right direction and we must build on it. 

2. Care for the carers

It’s been a long road to get NHS organisations to acknowledge that staff need care and support if we want them to care for patients. Staff health and wellbeing, and psychological support, has been creeping slowly towards the top of the national agenda since the Boorman report. Pre-pandemic the pace accelerated with the workforce crisis, when people began to see that NHS organisations are not necessarily the employer of choice. In 2019, the appointment of NHS England’s first Chief People Officer and the  personal commitment of the Board Chair of NHS Improvement, produced a national strategy for the health and wellbeing of the workforce and now, in the midst of crisis, we have a national strategy for staff stress, psychological distress and mental well-being and staff support.  

The work of caring for vulnerable people necessarily exposes both clinical and non-clinical staff at all levels to traumatic stress. Coming out of lockdown, building on the national strategy, every NHS organisation should consider its approach to stress management and develop an organisational strategy for managing traumatic stress that sits with the Human Resources function. More work is needed at local level, but it feels at last as if we are in a place from which there will be no going back.  

The Point of Care Foundation is of course focusing much of its work at the moment on this area, with the development of the Team Time initiative. Julian Groves has considered how this intervention should sit in the context of the wider set of measures we expect to see for NHS staff. In the longer term, as the peak of the Covid-19 crisis abates, Schwartz Rounds clearly have a significant role to play for Trusts seeking to ensure they are providing sufficient support to their staff. 

3. Suspension of the Family and Friends Test (FFT) and redeployment of patient experience staff 

NHS England has suspended mandatory collection of FFT data in acute hospitals, primary care and community health services. The suspension is temporary, but I’d like it to be permanent, because it has allowed patient experience staff to be redeployed onto more value-adding activities.

The FFT does not satisfy the technical criteria for high quality (quantitative or qualitative) data; academics and doctors have challenged its credibility and the opportunity costs in Trusts are enormous. In most, the roles of heads and managers of patient experience have become defined by the work associated with managing,  collecting and processing FFT data, and yet we know from research that most Trusts lack the capacity to analyse and use all patient experience data (not just the FFT) for quality improvement purposes. 

Suspending the FFT has liberated patient experience staff to spend time on activities that directly improve patients’ and relatives’ day-to-day, real experiences. The activities vary between Trusts, but they focus mainly on information, communication and relational care. For example: creating new family liaison services; expanding bereavement services; working with infection control to create safe spaces for visitors; working with Arts Managers to reduce boredom in the absence of the musicians, volunteers, art therapists and PAT dogs; working with chaplains to support patients’ spiritual needs; and so on. 

The Covid crisis seems to have woken the NHS up to the fundamental importance of humanising healthcare. Suddenly everyone seems to understand what we mean by ‘the human touch’ and no-one doubts its importance. I am hopeful that something significant has changed: the system has shown itself willing to look at the avoidable suffering caused to people when they become patients, and is investing time and effort to reduce that suffering where possible. The changes are real and systemic: they have come from the centre, but they are making an impact on every NHS organisation and changing the work of delivering patient care.