Abstract
The NHS Operating Framework for England (2011) describes each patient's experience as ‘the final arbiter in everything the
Commissioners and providers are expected to be guided by feedback on patients' experiences, and the public and patients are encouraged to use their own insights to ‘engage’ and help make decisions about resource allocation. The English NHS in-patient experience surveys coordinated by the Care Quality Commission assess patients' reports of their experiences in a number of domains (e.g. access, cleanliness and waiting times, safe, high quality and coordinated care, food and comfort) for which management, medical and multidisciplinary clinical teams are clearly, and variously, responsible. Yet, despite this, the ‘patients’ experience' has been mainly positioned as a nursing issue.
This was made particularly clear when, in January 2012, the UK Prime Minister, David Cameron, blamed excessive paperwork for preventing nurses from attending to the core elements of respect and dignity which affect the patients' experience. Announcing the creation of a Nursing Quality Forum in England, he also called for strong nursing leadership and hourly nursing rounds on hospital wards. Tweeting critics wondered if there was any evidence for the cost effectiveness of hourly rounds and some noted that an hourly round in a ward of twenty people would take a nurse more than an hour to perform. Others noted that none of this was likely to be achieved alongside the NHS having to make large financial savings. But it is not hard to imagine improvement, if, before moving on to the next patient, each nurse made a point of pausing to ask, ‘Do you have everything you need? Is there anything else I could do to make you more comfortable?’ These questions recall Don Berwick's 2 self professed ‘extremist’ vision of patient-centred care which suggested that nearly every interaction should conclude by the staff member asking, ‘Is there anything at all that could have gone better today from your point of view in the care you experienced?’, before listening to, and learning from, the answers.
En route to the development of a questionnaire to assess experiences of health care, Entwistle et al. in this issue 3 have conducted a critical interpretive synthesis of the literature to develop a thorough conceptual map of the aspects of health care delivery that matter most to patients. Strikingly, compared to existing health care quality frameworks (specifically the World Health Organisation, 4 US Institute of Medicine 5 and SENSES frameworks), 6 the elements that are important to patients focus on the interpersonal relationships involved in care. The authors have sensibly resisted condensing and grouping the elements of the conceptual map. The danger of broad banner headlines (such as patient-centred, secure and autonomous care) is that they can become too familiar, too easy to disregard or too readily assumed to be someone else's responsibility. Based on a capabilities approach, and rooted in statements that emphasize the service user's position, the conceptual map includes items such as wanting health care staff to ‘take me seriously’ and ‘anticipate, invite, welcome and answer questions’.
Some might quibble that patients are bound to pay more attention to the relationship side of care since relatively few have sufficient clinical knowledge to make a judgement about whether they have received good care. It is entirely possible that the occasional service user might experience relatively pleasant, yet objectively poor quality, clinical care. Yet usually patients, and their visitors, are in a strong position to observe how the system is working (or not) while they are in it. When invited to talk about a stay in hospital, patients (and their friends and families) often provide insights on the organization of care, communication and information, staff skills and teamwork. The Heart of England NHS Trust recently won a Patient Experience Network award for a ‘back to the floor’ programme which involved asking patients about their experiences while in hospital and then working on areas of concern. The King's Fund in London has published an Experience Based Co-design toolkit to guide provider organizations through a service improvement process that involves collecting insights from service users and staff. 7
How might the issues that matter to patients be enlisted to make a difference to the way that health care is delivered? Patients are sometimes so moved by their experiences that they offer compliments or make complaints. A patients' survey questionnaire, a patient reported outcome measure (PROM) or a patient experience measure (PREM) may prompt them to comment on designated, generic, aspects of their recent health care. However, many are disinclined to give feedback, sometimes because they think that their own experiences, whether good or bad, are unusual. For example, me and my colleagues found that lymphoma patients, interviewed throughout the UK, believed that that they had been surprisingly lucky to receive well-organized care from kind and talented NHS health professionals, yet these impressions were far from atypical. 8
The internet is changing the way that patients and the public experience health and illness. It seems likely that this will extend to shaping health care. The NHS Future Forum report on Information 9 talks of ‘a new culture of transparency and public voice being fuelled by the digital revolution’. Patients' experiences, gathered and disseminated on the internet, are expected to be a central plank of this culture change. Web based feedback sites populated with comments from other patients with comparable experiences, may prompt people to write about what has happened to them (even from the hospital bed) and could be a highly efficient way to identify pressing concerns, such as patient safety, as well as for longer term quality improvement. Websites featuring patients' stories about specific providers (such as www.patientopinion.org.uk/www.patientstories.org.uk) have already provoked discussion, debate and, crucially, responses from providers about safety and quality issues. People may be more encouraged to complete PROMS and PREMS if they can then compare their scores and experiences with those contributed by other patients.
There are numerous benefits to be gained from listening to, and changing the way that services are delivered, in line with what matters to patients. Anyone who remains sceptical might be encouraged to think of the Public Inquiry into the failure of care at Mid Staffordshire NHS Foundation Trust where, had the patients' stories been heard earlier, the scandal just might have been avoided. 10 Enwistle et al. have provided a route guide which encourages us to think about the importance of the relational aspects of care and to recognize that the consequences of getting it wrong can spread far beyond the original encounter.