As the NHS in England becomes confident that it has managed the first peak of covid-19 without being overwhelmed, it is taking stock of the enormous changes created in service provision, and asking a new question: what do we keep for the future?
On 1 May the NHS Confederation (the membership body for all NHS organisations) launched a campaign called “NHS Reset”, with the simple message: “We must build on the progress made to chart a new course.” But who is to say what progress looks like, what has worked, and should be kept, and what has not? The Confederation suggests these questions will be answered by “leaders and clinicians”: their background briefing pays no attention to the experiences of patients, carers and families as it embarks on redefining “the way we (sic) plan, commission, and deliver health and care.” This is a mistake. Assumptions about what patients and the public value are not a good basis for planning and design.
This point was hit home at a webinar hosted by National Voices with the Traverse and PPL consultancies on 7 May 2020, where participants agreed that patient experience and preferences must be central to driving service redesign. So how should that be done?
Arguably what we need now is a new national research agenda for patient experience, which should highlight three dimensions. Firstly, a thorough understanding of what people have experienced during covid-19. Secondly, a radical review of how patient experience is measured; and thirdly a focus on what enables and supports people to self manage their health and medical conditions.
Understanding of patient experience during the pandemic
A wealth of information about patient, carer and public experience during the pandemic, especially the lockdown period has been logged and continues to accumulate. National Voices is posting first-person stories as ‘OurCovidVoices’; Healthwatch England is doing likewise; so too the Patient Experience Library, and Traverse has just launched the results of some insightful interviews and discussions. Condition specific charities are also building pictures, using data from their helplines. For example, Cancer Research UK reports the mixed bag of cancer patients’ experiences: frustrated at treatments being suspended or revised, but also understanding that this is often for medical reasons (where the treatments weaken immune systems) as much as reductions in service. Research needs to inform us not only about new forms of service delivery, but what people feel about such trade-offs. Large surveys in Europe and the US have shown extensive concern about disrupted services. The Ideas Alliance is also hosting an illuminating series of blog posts on people’s experience of covid-19. #covidconsiderations
Along with this information we need bigger data to answer bigger questions. Have the service changes cost lives, as may be indicated by the data on excess deaths not attributable to covid19? What has happened to the “normal” caseload of severe and acute conditions such as heart attacks and strokes that hospitals expected to keep seeing?
The result of Traverse’s small study suggests people have not sought care for a combination of reasons. Fear of getting and then spreading covid infection (for oneself or family), misinformation (such as that all non-covid services are “closed”), and previous poor experience of accessing healthcare services.
These suggestions need bottoming out—what if, as some winter cold snaps have also previously suggested, there is a substantial chunk of urgent care use that can be traded off without undue harms? Other questions in urgent need of answers are: What has been the impact on patients of primary care (and other services) shifting wholesale from face to face appointments to 75% phone triage and virtual consultations? Or the replacement of outpatient clinics with on demand phone support? Without that knowledge it is not possible to determine the right balance for the future.
The benefits and risks of a massive shift to new forms of virtual care need to be defined by patients and families as well as health care professionals. For some people, the loss of direct consultation, and the psychological comfort of human caring, may be a major issue. For others there could be sheer relief at not needing to leave home and journey to medical facilities.
Assessing the impact of the disruption to normal care during the pandemic should provide insight into something that the NHS has been slow to recognise and accept—the extent of overdiagnosis and overtreatment. There should also be important lessons to take from the very sharp contrast, especially for people with multiple conditions, between previous patterns of service, where frequent attendance for appointments at different clinics on different pathways created a well-researched extra ‘burden of treatment’, and the new situation where people have had to take total control of self management. What is the comparative impact on people’s stress, anxiety, pain and fatigue?
Rethinking how patient experience is measured
The NHS established national surveys of patient experience in 2002, now managed by the Care Quality Commission and, for general practice, by Ipsos Mori on behalf of NHS England. These, and the later Friends and Family Test, are all based on assessing people’s physical “visits” to service settings, especially hospitals.
How do these data fit with a future—prefigured in the NHS Long Term Plan, now massively accelerated by the coronavirus—of keeping people away from services? Building “digital first” options, massively cutting outpatient appointments, and forming integrated primary and community care “networks” were already set to be the “new model of care.”
The experience of tens of thousands of people self isolating or ‘shielding’ at home, reducing their service use, while things are brought to their door or provided online, looks like an exaggerated but not inaccurate version of the future. So what have those experiences been like?
Of course, health—and safety—have been top of everyone’s minds, but not necessarily in the sense of ‘using health services’. As Iona Heath writes in The BMJ, the coronavirus has returned us to a historically ‘normal’ state of living ‘at a cliff edge’, in fear of infectious disease.
To understand the realities for shielded people, others with underlying conditions, carers or other patient groups, we need a wider angle lens capable of looking at what it means to be thrown into full-on self management—and what it takes to feel safe and supported, and to succeed.
University College London’s Covid-19 Social Study, using a panel of over 85,000 respondents, has been assessing these psychological states. By week six of lockdown, levels of loneliness, anxiety, self harm and abuse were stable, but one in 12 adults was worried about access to food; and stress linked to fear of catching or becoming ill from covid-19 continued to be high.
Thus while professionals worry about getting people to present themselves as patients again, people themselves may be focused on basic survival issues. Their use of services including the NHS is part of a changed set of priorities, coping strategies and trade-offs.
It may be time to trial new forms of experience measurement that are more similar to those used in social care, or for users of local authority services more generally. They would look at the experience of being supported to manage one’s health: getting access to and using a range of health and health-related support services, experiencing personalised care, and improving one’s knowledge, skills and confidence to manage. All of this would follow the logic of the Long Term Plan, including its ‘Universal, Personalised Care’ model, and of reframing the NHS into community based networks within Integrated Care Systems (ICSs). The ICSs, as regional health and local authority systems acting for the whole population, might follow the lead of Surrey Heartlands in establishing residents’ panels as part of this feedback.
Sources of local support should be identified and valued in the move to “reset” health.
During the pandemic “very local” support has been crucial to ensuring people feel safe, not alone, and have access to basic needs. A story on “OurCovidVoices” illustrates this: the narrator and their daughter both have respiratory conditions and are isolated from each other by ‘shielding’ guidance. But it is not contact with health services as such that is top of mind: rather, the risk of depression and the fact they both ‘struggle getting access to food and essentials… [but] the local voluntary services and charities have been incredible in supporting us both with food and offering well-being support.’
This localised support has been mobilised by covid mutual aid groups. There are over 3,500 in the UK, findable through a national website. I help manage one at village level: supporting 58 individuals among our 340 households with daily phone calls, food access, prescription delivery and a pop-up shop for essentials, we have no need of national schemes like the NHS Volunteer Responders.
Ours is small beer. But covid mutual aid groups cover whole towns, London boroughs, and even whole cities—mapping most of Sheffield’s wards, for instance.
“Very local” support seems invisible to the NHS, but not to other bodies. Voluntary sector infrastructure organisations, local businesses, housing associations, national funders such as the UK Community Foundations network, and especially local authorities (large and small) have responded by adding funding and offering support to self-organisation.
In Sheffield they have quickly modelled this by seeing the very local groups as the front line of personal support, establishing a level of community “hub” support and coordination, and linking in the statutory bodies
The picture of “what has worked” during covid-19 is not complete without recognising how this support has enabled people to stay and feel safe and keep away from service settings. And future redesign must incorporate it as part of the potential fabric supporting people’s coping strategies.