Introduction and context
Stroke care in the UK has improved radically since the launch of the National Audit Programme in 19981 and the National Stroke Strategy in 2007.2,3 Access to specialist services, reduced length of stay and community services such as early supported discharge are now accepted as standard. However, important efficiency and process improvements such as these have not always been matched by the experience of patients, especially those with moderate to severe disability, who can spend weeks and months on an inpatient stroke unit. Persistent concerns are raised about stroke unit environments that focus on organisational priorities, which provide minimal opportunities for patients’ social, cognitive or physical activity.4,5 Results from observational studies on stroke units since the 1980s have consistently shown that, for most of the time (> 70%), patients are inactive and very often alone.6–8
Currently, the focus in relation to activity levels is the provision of structured rehabilitation by therapists [physiotherapists (PTs), occupational therapists (OTs) and speech and language therapists], which is audited against a national guideline that recommends that every day each patient should receive at least 45 minutes of therapy, as appropriate.9,10 However, audits and standards have not improved the experience of patients or increased activity opportunities outside these structured rehabilitation sessions with therapists.11,12 This is critical as when patients are bored and inactive it can have an impact on aspects of their recovery and potentially foster a feeling that ‘nothing is being done’.7
In a recent commentary on mainstream approaches to quality improvement and the potential role of co-production, Batalden13 highlighted how professionals and patients can become increasingly frustrated by product-dominant models, which focus solely on processes, actions and outputs, and that such approaches risk neglecting relationships and outcomes that are important to patients but are less easy to measure (such as patient preferences). However, improvement work to date in acute stroke care has been highly regulated and measured through national and local audits;3 there is an opportunity now for more creative responses to the persistent problem of very low activity levels in inpatient stroke units. Co-production uses the experiences and assets of patients with stroke and their families to work together with staff to address the problem.14,15
We aimed to evaluate (1) whether or not co-production approaches can be used to improve the accessibility and quality of therapeutic activity in acute stroke care and (2) whether or not the co-produced solutions in one stroke unit are transferable to other similar acute inpatient services.
In this introductory chapter, we briefly describe stroke and stroke care and management, setting out the policy context before providing a brief summary of the persistent concerns about rehabilitation, inactivity and improving patient experience. We then describe experience-based co-design (EBCD), our chosen co-production method for quality improvement. Our rapid evidence synthesis, conducted during the set-up of the sites 1 and 2 and for the EBCD study, is mentioned here briefly. Chapter 2 provides a description of the methods and Chapter 3 provides the results. The paper was published in 2017.16
Stroke: the state of play
Stroke statistics: organisational issues and impact
Stroke, known in recent public communications as a ‘brain attack’, can have a devastating impact on people’s lives and equally on the lives of those who live with and care for those people.17 The effects of stroke are wide-ranging depending on the location and extent of the brain damage, but they can include paralysis and cognitive and communication difficulties among many other problems, such as difficulty with vision, continence and fatigue.18 Stroke continues to be the largest cause of disability in the UK, and 84% of people leaving hospital will require help with activities of daily living.17
Stroke incidence is high; 100,000 people will experience a stroke in the UK each year.17 Although the numbers of first stroke have fallen significantly since 1990, by 2035 the rate of people over the age of 45 years having a stroke is expected to rise by 59% and the absolute number of people living with stroke will rise by 123%.17 Population studies show that stroke incidence is not equal across different populations; people of black African, black Caribbean or South Asian ethnicity are more likely to have a stroke at a younger age.19 In London, black people are twice as likely as white people to have a stroke. In addition, people from more socially deprived groups are likely to experience more strokes earlier in life.20
These UK trends are also reflected in global studies that show that the absolute numbers of people who have a stroke every year, stroke survivors and related deaths, as well as the overall global burden of stroke, are great and increasing.21 Estimates vary depending on the population sample and data sources, but it is suggested that in the UK there are 950,000 people aged ≥ 45 years.22 This costs the UK economy approximately £8.9B per year (5% of the NHS budget), of which £4B is spent on treatment, including organised inpatient stroke unit care.23 This figure is set to treble by 2035.22
Recent decades have seen significant developments in the organisation and management of stroke, particularly following the implementation of the National Stroke Strategy by the Department of Health and Social Care in 2007.24 The role of organised stroke care is well established in significantly improving outcomes after acute stroke.25 Most people experiencing a stroke in the UK will get early access to care provided by stroke specialist staff. Large-scale service reconfigurations such as the London and Greater Manchester models have fundamentally changed care pathways, and the average length of stay on an inpatient stroke unit is likely to be around 17 days.26,27 Large-scale reorganisation has also seen the case mix on stroke units change; patients with mild disability are discharged earlier as a result of the expansion of early supported discharge services, while critically ill patients with more complex and severe disability are likely to require a considerably longer inpatient stay.1
Rehabilitation, recovery and persistent concerns
The component of acute stroke care consistently highlighted as likely to improve long-term outcome is rehabilitation. This assertion is informed by research showing that early activity post stroke not only improves overall prognosis but also can reduce disability.28 This is reflected in the following statement from the Department of Health and Social Care’s National Stroke Strategy:
Rehabilitation after stroke works. Specialist co-ordinated rehabilitation, started early after stroke and provided with sufficient intensity, reduces mortality and long-term disability.
Rehabilitation is, therefore, a major part of stroke care. Multidisciplinary stroke teams typically include doctors, nurses, social workers, therapists, dietitians and psychologists, but OTs, PTs, and speech and language therapists are recognised as the central providers of rehabilitation who aim to maximise independence and prevent further complications after a stroke.29
The fifth edition of the National Clinical Guideline for Stroke,9 published in 2016, includes a number of key recommendations that, if followed, would have the most impact on the quality of stroke care. One of these recommendations is about the intensity of rehabilitation, and states:
Patients with stroke should accumulate at least 45 minutes of each appropriate therapy every day, at a frequency that enables them to reach their rehabilitation goals, and for as long as they are willing and capable of participating and showing measurable benefit from treatment.
Similar recommendations were published in the 2013 National Institute for Health and Care Excellence (NICE) guidelines for stroke rehabilitation30 and updated in more recent formulations of NICE stroke rehabilitation pathways:31
Offer initially at least 45 minutes of each relevant stroke rehabilitation therapy for a minimum of 5 days per week to people who have the ability to participate, and where functional goals can be achieved. If more rehabilitation is needed at a later stage, tailor the intensity to the person’s needs at that time.
Each of the recommendations is underpinned by high-quality evidence that increasing the frequency and intensity of rehabilitation improves recovery and clinical outcomes.32,33 This has strongly influenced the design and implementation of organisational change interventions with a focus on achieving large doses of therapy and the belief that ‘more is better’.18,34 However, this hypothesis is built on three assumptions: first, that national stroke guideline recommendations on rehabilitation intensity are interpreted and enacted consistently by therapists; second, that therapy is available over all 7 days of an inpatient week; and, third, that rehabilitation is the responsibility of therapists alone and not that of the whole multidisciplinary team.
Measuring the performance of stroke units against agreed standards is the responsibility of the Stroke Sentinel Stroke National Audit Programme (SSNAP). A minimum data set based on self-reported activity is collected continuously and reported quarterly, which includes performance against the rehabilitation intensity standard described above. Although the proportion of patients reported to require therapy remains constant (PT and OT, 80–85%; speech and language therapist, 50%), the median number of minutes received of the required intensity remains below the target of 45 minutes (PT and speech and language therapist, 30 minutes; OT, 40 minutes), with wide national and regional variation. Importantly, therapy is rarely a 7-day service; in 2016, SSNAP data showed that only 31% of stroke units had access to at least two types of therapy 7 days per week.35
Several authors have stated concerns about the focus on a 45-minute therapy guideline:11,12 first, the accuracy of reporting and what is being counted and, second, that direct contact time with therapists could be considerably lower. Clarke et al.11 carried out an ethnographic case study across eight stroke units comprising > 1000 hours of non-participant observations and 433 patient-specific therapy observations and found that a considerable amount of time was spent carrying out activities relating to information exchange rather than patient-focused therapy. In another ethnographic study across three stroke units, Taylor et al.12 found that therapists wanted to provide more therapy and felt guilty for not doing so; there was also a lack of multidisciplinary rehabilitation. Both research teams found that rehabilitation was largely the responsibility of therapists, and patients were often observed as inactive outside their designated therapy sessions. Evidence from these studies and others shows that the issue of inactivity of stroke patients on stroke units persists. Studies consistently show that often the most disabled patients are likely to spend the majority of their time inactive and disengaged.7,36
Some attempts have been made to address the enduring issue of inactivity, but with mixed results. A study in Australia37 concluded that dose-driven interventions, including circuit class therapy and 7-days-a-week therapy, increased the amounts of therapy provided but did not increase meaningful patient activity outside therapy sessions; the researchers called for greater understanding of the drivers of activity outside therapy sessions. Trammell et al.38 found that a programme of physical activities ‘prescribed’ in addition to structured therapy on a stroke unit was feasible, but again this was overseen and graded by therapists. Although the research team found that staff and patients reported high satisfaction, levels of expectations about activity prior to implementation were not known and the activities consisted of repetitive exercises that required supervision.
We question whether current models of ‘therapist’-focused inpatient stroke rehabilitation and reliance on ‘waiting for therapy to be delivered’ may foster dependency and inactivity and are, therefore, at odds with promoting activity and self-management in hospital and after discharge.39,40 The irony is that a highly medicalised stroke unit can meet national quality standards but is counterproductive to promoting patients’ independent activity. Overall, evidence suggests that acute health-care environments, staff, carers and patients could do more to enable an increase in activity, which could also have the potential to expedite discharge and decrease dependency on health and social care services in the longer term.28,40,41 We have found that although studies have identified short-term methods to increase patients’ activity, these are often driven by the perspectives of professionals, with little evidence of patient and carer involvement in the development and implementation of interventions.
We subscribed to the ideal put forward by Sir Roger Boyle, previously the National Director for Heart Disease and Stroke, ‘to make rehabilitation the basis of the patient’s day’ (p. 4; contains public sector information licensed under the Open Government Licence v3.0).42 We also recognise that there is an opportunity for patients with stroke, families and staff to work together to address the issue of inactivity. Studies thus far have emphasised the necessity to change but have not directly considered the ideas and experiences of the people that they seek to help.
Improving patient experience: acute health care
Improving patients’ experiences and putting patients at the centre of everything is a key aim of the NHS and is frequently reflected in health policy such as ‘putting patients first’, which highlighted citizen participation and empowerment as one of six characteristics of a high-quality, sustainable NHS.43 The value of innovations, which build on patients’ rights to drive up quality of experience, is becoming more apparent. NHS England’s Five Year Forward View44 set out how the NHS must change, arguing for a more engaged relationship with patients and carers in order to promote well-being and prevent ill health. Frameworks are now available for organisations to carry out organisational assessments to evaluate how patient experience is embedded into culture and operational processes, with ‘good’ exemplified by evidence of staff and patients who have worked together to improve services.45 To improve patients’ experiences, NHS policy-makers increasingly seek to encourage the development of new relationships between patients, carers and clinicians. These relationships are to be based on working together, in equal partnership, not only to make personal care decisions and agree care plans, but also to develop partnerships in which patients, carers and clinicians are involved in the co-design, co-commissioning and co-production of health-care services.45,46
The NHS is a complex system, and to focus on patients’ experience when resources and workforce are under pressure is a fundamental and critical challenge. Some authors have raised concerns that ‘the picture [patient experience] is one of monitoring and compliance rather than ownership and motivation to improve this key aspect of quality’.47 In addition, the empirical evidence for patient and public involvement is low and tends to be descriptive rather than evaluative.48 Yet Berwick states that ‘workers and leaders can often find the best gaps that matter by listening very carefully to the people they serve’;49 similarly, Goodrich and Cornwell highlight that ‘patients’ stories and patients’ complaints remind us of the importance of seeing the person in the patient and bringing patients’ experience alive’ (© The King’s Fund; reproduced with permission under the CC BY-NC-ND 4.0 licence, see: https://creativecommons.org/licenses/by-nc-nd/4.0/).50
Co-production
We believe that engaging patients and staff in service redesign of stroke units could provide solutions that address the lack of activity outside structured therapy. Co-production methods harness the power of patients, carers and staff to make changes they know and care most about.46,51,52 In the broadest sense, co-production means delivering public services in an equal and reciprocal relationship between professionals and people using services and their families.53 The central idea in co-production is that people who use services are hidden resources, not drains on the system, and that no service that ignores this resource can be efficient. Advocates of co-production see it as a different way of thinking about public services, with potentially transformational consequences, as people who use services take control of defining and managing their care:
The biggest untapped resources in the health system are not doctors but users. [. . .] We need systems that allow people and patients to be recognised as producers and participants, not just receivers of systems. [. . .] At the heart of [co-production], users will play a far larger role in helping to identify needs, propose solutions, test them out and implement them, together.
[. . .] assessing, and evaluating the relationships and actions that contribute to the health of individuals and populations. At its core [co-production] are the interactions of patients and professionals in different roles and degrees of shared work.
Batalden emphasises the value of health care as a co-produced service but that the essential aspects such as utilising all forms of knowledge are often neglected. The ambition of ‘shared work’ can be misinterpreted and the importance of trustworthiness between patients, carers and staff misunderstood.
Despite the increased focus on co-production in health-care policy and improvement, no studies have reported using a co-production approach or participatory methods to improve acute stroke care. However, there are examples from across other areas of acute health care. Our first research question was ‘What is known about the efficacy and effectiveness of co-production approaches in acute health care?’. A rapid evidence synthesis published in 2017 systematically reviewed the outcomes of studies that had developed and implemented co-produced interventions in acute health-care settings.16 The review highlighted a lack of rigorous evaluation of the effectiveness and cost-effectiveness of co-produced interventions in acute health care (despite the increasing adoption of co-production as a form of intervention and one that typically drew on co-design approaches). Nonetheless, the impact of what might be perceived as ‘small, mundane things’ and the range and quality of patient-focused improvements seems to have a large impact on experience. As other authors have commented, an increasing focus on the attached meanings, rhythms and time frames in a health-care service – the degree and type of ‘the doing’ – can shape services in profound ways.54
As interest in co-production within health-care improvement grows, so do the concerns that co-production may become misused or diluted from its original aim of enhancing collaborative work to produce public goods or services with citizens playing an active role.16,55 Co-production originated through a recognition of the role that service users play in determining the effectiveness of public services, but several authors have highlighted issues with the false impression of equality or implicit professional dominance that can emerge as relationships between service users and providers are – supposedly – reconfigured.55,56 Approaches that prioritise the narrative and lived experiences of those who use health-care services can have the power to captivate and engage staff, helping to create conditions necessary to enable shared improvement work.
Experience-based co-design
With increasing attention to the potential for co-production and applying design thinking as a means of improving health care, participatory approaches such as EBCD have become more widespread. The ‘co’ in ‘co-design’ refers specifically to partnership, equity and shared leadership in terms of face-to-face user and provider collaboration in the co-design of services.47,51 EBCD originated in 2005 as a participatory action research approach that explicitly drew on design theory51 and was first piloted in a head and neck cancer service at Luton and Dunstable Hospital.57 Through a structured six-stage process, EBCD entails staff, patients and carers sharing and reflecting on their experiences of a service, working together to identify improvement priorities, devising and implementing changes, and then jointly reflecting on their achievements. An important element of the approach is that patient experiences are gathered through filmed narrative interviews, and insights from these are shared with staff in an edited ‘trigger’ film. Several years ago, an international survey of completed, ongoing and planned EBCD projects in health-care services found that at least 59 EBCD projects had been implemented in at least six countries, with at least a further 27 projects in the planning stage.58 The number of projects appears to be growing year on year, but, to our knowledge, EBCD has not been used in acute stroke services, despite the seemingly intractable issue of inactivity and boredom and an over-reliance on system- and (narrowly defined) outcome-focused improvement.
Full details of each of the six stages in EBCD can be found in The Point of Care Foundation’s free-to-access online toolkit, which also provides lessons and feedback from staff and patients, including details of an ‘accelerated’ form of the method, which was previously developed and evaluated with funding from the National Institute for Health Research (NIHR) Health Services and Delivery Research programme.59,60 A general overview of the approach is provided in the study by Robert et al.61
The EBCD cycle, which typically takes 9–12 months,51 is divided into six stages: (1) setting up the project; (2) gathering staff experiences through observational fieldwork and in-depth interviews; (3) gathering patient and carer experiences through observation and 12–15 filmed narrative-based interviews; (4) bringing staff, patients and carers together in a first co-design event to share – prompted by an edited 20- to 30-minute ‘trigger’ film of patient narratives – their experiences of a service and to identify priorities for change; (5) sustained co-design work in small groups (typically of four to six people) formed around those priorities; and (6) a celebration and review event.47
One of the major barriers to the implementation of the approach is the time and costs involved.16,60 Questioning whether it is always necessary – for the purposes of local quality improvement work – to generate local trigger films in the discovery phase, Locock et al.60 tested an accelerated approach that used a national video and audio archive of films; they found that this method generated a comparable set of improvement activities. Building on this work, we first aimed to evaluate the feasibility of a full EBCD cycle and the impact of stroke patients, carers and staff co-designing and implementing interventions to increase activity in two stroke units. We then aimed to compare and contrast the impact of undertaking a full EBCD cycle in these two units with an ‘accelerated’ approach – which drew on the fieldwork and findings from the first two units – in two further units. We recognised that stroke projects addressing inactivity have focused mainly on physical activity, and for this project we used an umbrella term of ‘activity’ to be anything that patients do, however small, supervised or non-supervised, and encompassing physical, cognitive or social forms.
In summary, we believe that rehabilitation and the promotion of activity should be considered as a joint enterprise that draws continuously on both lay experience and professional expertise; this contrasts with the largely unsuccessful target- and audit-driven approaches employed to date. An EBCD cycle may provide a novel space and sufficiently flexible structure for staff, patients and families to think creatively about how post-stroke care in stroke units could be redesigned to increase activity. Central to the approach is the carefully considered development and implementation of workable solutions that can be applied and tested in routine practice through an iterative process of co-designing and prototyping. This extended type of engagement recognises the necessarily adaptive nature of stakeholder involvement, and of the gradual crafting, refinement and emergence of innovative interventions. Developing cultures of continuous rehabilitation is likely to require early and sustained involvement of the whole multidisciplinary team and some revision of their working practices, and the development of practical ways to engage and involve patients and their families.
This led us to formulate the following research questions to be explored through our empirical fieldwork in four acute stroke units in England:
- How do patients and carers experience the use of a co-production approach and what impact does it have on the quality and intensity of independent and supervised therapeutic activity on a stroke unit?
- How do staff from acute stroke units experience the use of a co-production approach and what improvements in independent and supervised therapeutic activities does the approach stimulate?
- How feasible is it to adopt EBCD as a particular form of co-production for improving the quality and intensity of rehabilitation in acute stroke units?
- What role can patients and carers have in improving implementation of National Clinical Guideline recommendations on the quality and intensity of rehabilitation in acute stroke units?
- What are the factors and organisational processes that act as either barriers to or facilitators of successfully implementing, embedding and sustaining co-produced quality improvements in acute care settings, and how can these be addressed and enhanced?