A total of 33 patients were interviewed and participated in focus groups (8 relatives also participated in the study, 2 of whom were unequivocally happy with their care); 12 patients described being very happy with their care (4 on the stroke pathway and 8 on the hip fracture pathway) and 21 described a mixture of good and poor experiences of care (13 patients on the stroke pathway and 8 on the hip fracture pathway). Interview quotes are labelled according to the type of interviewee and numbered to illustrate the different people who are quoted. We discuss the first research question in relation to individual, patient-staff interactions and team dynamics that made a difference to how patients experienced their care. The second research question explores wider structural factors that limited staff’s ability to create changes to improve patient experiences. The third research question on outcome measures explores how staff gathered and used evidence and data about patient experiences. Through this analysis, we answer the fourth research question about the power dynamics that arose at different structural, cultural and agential levels in the case study Trusts and their impact upon staff as well as patients and carers, drawing these issues together in the Discussion section.
What individual and team behaviours and attitudes result in improvements to patient and family experiences?
Patients and their relatives at both sites described good and poor experiences of care. Patients who had good experiences of care spoke of acts of kindness, compassion, respect, empathy, emotional support, caring and efficiency that made a key difference to their care.
“They were actually waiting for us as the ambulance pulled up, I mean I’ve only seen that on Casualty and Holby City. We could not expect any better service at all” (Stroke AE, relative 1).
“On one occasion, a member of staff got down on her knees and washed and creamed [the patient’s] feet, which [she thought] was wonderful” (Hip fracture ward, patient 2).
“The cleaners, they’d run errands for some of the elderly ladies who never had visitors … they’d go off duty and next day they’d come in with fresh soap for them and something they like to smell, lavender and things” (Hip fracture ward, patient 3).
Patients also described positive experiences of communication where they and family members were “informed”, “given information verbal and written and visited by senior members of the clinical team after surgical procedures”.
One patient described how they found staff doing everything they could in the circumstances:
“They did so many tests it was unbelievable, it was as if we’d got every specialist running around, there was no waiting for this, wait for that, everything was done” (Stroke AE, patient 4).
Conversely, patients who experienced poor care (described as behaviour lacking in compassion, unkindness or rudeness, bullying, gossiping, not listening), said they felt considerably disempowered:
“The only thing I did not like was them night nurses gossiping and they couldn't be bothered to answer that bell … She said ‘you don’t need a bedpan’. I said ‘I will do, by the time I get out now I’ll be wetting myself and I’ve waited long enough for you’. She said ‘we’re too busy’” (Hip fracture ward, patient 6).
“I tried to explain how I was feeling at this moment in time, and all he could do was complain about the NHS” (Stroke outpatient, patient 7)
Overall, 21 out of 33 patients across both sites described feeling lonely and isolated in their care. They raised concerns about poor or inadequate communication or information by doctors and nurses that did not allow them to feel listened to, ask questions or to discuss their concerns, test results, clinical condition, care and treatment or the taking of new drugs:
“In my opinion, you’re told what’s going to happen to you and you ain’t got no say in the matter” (Hip fracture ward, patient 8)
“Just being acknowledged that I existed would have been really very nice” (Stroke ward, patient relative 9)
Policies that were supposed to support patient- and family-centred empowerment did not always translate into patient and relatives everyday experiences: A relative of a stroke patient who had experienced various difficulties in getting her concerns and then her formal complaint addressed and in trying to use services such as the Patient Advice and Liaison Service, said: “Didn’t know which PALS [Patient Advice and Liaison Service], so there was one for North-X and one for South-X and so I wrote to all of them and I got no joy from anybody” (Stroke relative with concerns across the pathway, 10).
Communications with patient and family members could be particularly problematic:
“He was suffering from dementia and he couldn’t communicate with anybody … he was so terribly lonely, he was crying … they [nurses] could have tried to communicate with him better than what they did … They were just going in with his medicine … saying, ‘Hi X’ and that was it, out again” (Stroke ward, relative 11).
“The worst thing was when they actually thought I was dying [in intensive care], instead of waiting for my husband … My youngest daughter was eighteen. She was at the hospital all the time; she wanted to know what was going on. So she sat there and sat there … and my husband’s not there and family … And, instead of waiting, when the consultant came round, he told my eighteen-year-old, ‘Well, we don’t think your mum’s going to live’. And I think that’s a terrible thing to say to a young girl.” (Hip Fracture, Intensive Care Unit patient about communication with her family, 12)
However, patients’ agency to have a say in their care could clearly be constrained by time pressures, on both wards:
“Generally, she felt the nurses didn’t explain or give her info about her fracture properly, how big an operation it was. They just didn’t seem to have the time and said they would come back to her about this but didn’t” (Hip fracture ward patient 13).
Additionally, after discharge in outpatient clinics, patients commented about the lack of opportunity to ask questions: “There wasn’t the time, they were more interested in in and out” (Stroke patient 12).The husband of a stroke patient noted, with respect to communicating with his wife while she was “out of it all” with her stroke, “There was no backup at all [for his wife], she seemed to be a nonentity” (Stroke ward patient relative 14).
However, staff’s own individual values and attitudes could shape the communication process with patients and their families and make a difference: “They’re naturally passionate about it [patient care] for no personal reason, no personal gain, no positional gain whatsoever …” (Hip fracture senior staff member 1). Healthcare assistants, ward domestics and assistants showed a strong sense of awareness of the importance of core patient-centred values in the caring process by talking about looking “at the patients as if it’s my mum or my dad in that bed” (Staff on Stroke pathway 2).
However, on both pathways, staff general attitudes towards patients were causing concern and compounding issues of poor communication and patient care:
“We’d got lots of complaints about staff attitude, we’d got lots of complaints about patient care generally and I felt that if we engaged with the relatives more, if we involved them more that we would reduce the number of complaints” (Stroke staff member 4).
In mediating these communication issues, staff hierarchies could play a further part in the communication difficulties in different ways.
One patient said: “I feel more confident talking to a nurse about my symptoms than I do the doctor because it seems like the doctors are just … probably not their fault, they’re absolutely rushed off their feet but it’s very, boom, boom, boom, move on” (Stroke ward patient 15). On both the stroke and hip fracture pathways there was also evidence of the importance of the role of domestics and ward assistants in communicating with patients and relatives in a supportive and less authoritative way:
“The domestics, they go in, they just go into bay one and I’m not kidding you, they’ve had a massive laugh in there, all the patients get on, the families have joined it, they’re all having a bit of banter about what they’re going to have to drink, what they’re going to have to eat and the tea lady, oh she was amazing, but it bucks everybody up … the tea lady, the domestic, they would come and tell you, ‘oh she’s not very comfortable in the bed, can you go to her’ … so they are your eyes and ears as well” (Senior stroke staff member 4).
“For the dementia patients, we ask the family to give us information on how they were before and we can use that information then so we know the patient before she had the dementia and we can talk to her about her husband” (Hip fracture health support worker 5).
At both sites, management talked about finding staff with the right values to promote patient-centred care and challenge paternalism through actively recruiting “people with the values and skills the organisation wanted”, “changing the culture through staff leaving, and ongoing staff management processes” and through “supporting staff, by trying to make things better for them as well as for the patients” (Senior staff member, Stroke pathway 6).
“Whether it’s departmental culture or organisational culture, it’s rooted in the beliefs and values of the staff that actually work within that department, and it’s very difficult to change beliefs and values …, very difficult to change medical values when they’ve been entrenched in 300 years of training, but what you can do is to recruit people with the values that you believe are important, and that’s how you then change an organisation” (Doctor, Hip fracture pathway 7).
However, social context, staff team and organisational systems also shaped the relationships that staff had with patients and relatives. Multidisciplinary teamwork was generally noted by most staff at both sites as important and supportive. This enabled them to tackle the complexity of patient care across pathways stretching from AE through to the ward and discharge, while juggling competing demands and shared resources. Key enablers in this process included promoting a strong team culture, shared values, interdisciplinary teamwork and ward rounds involving various healthcare staff (e.g. doctors, nurses, healthcare assistants, physiotherapists/occupational therapists, domestics, etc.) and support from colleagues. A senior practitioner on the hip fracture pathway thought that having a supportive team open to change was more important in getting her job done than the support she received from the wider organisational environment: “We do bounce an awful lot off each other and support each other, and we are very close, because sometimes it’s a very difficult job” (Senior hip fracture staff member 8).
On the stroke pathway, different staff spoke about being prepared to take on roles that went much wider than their job descriptions, because if they just stuck to their job descriptions, the “ward wouldn’t function”. Some senior staff saw themselves as patient advocates, in trying to challenge systems that disempowered patients: “I shout at bed managers because that’s my job, I have to be a voice for my stroke patients. They don’t like me but I’m not here to please … if somebody is in the bed where a stroke patient should come, the bed manager will get a roasting from myself” (Stroke staff member 9).
Structural barriers also impacted teamwork as staff described a lack of support to attend meetings and share concerns. Hierarchies of power and authority within teams could considerably impact teamwork relations: “So this is what happens in a meeting, when you have a multidisciplinary meeting, the surgeon responsible actually has an interaction with a patient for probably the least amount of time from the other members of staff and yet would dominate 90% of the decision-making process or the influence, you know” (Doctor, Hip fracture pathway 7).
This situation could particularly impact more junior members of staff: “I suppose we have only limited power, however much we say. I suppose if it is not in the right tune, I suppose it just goes onto deaf ears” (Stroke staff member 10).
On the hip fracture pathway an Advanced Nursing Practitioner described how a lack of continuity of care on the wards, aggravated by 12 h nursing shifts, made it much harder for “teamwork and ownership” to happen and to get the information needed because you “haven’t got the same nurse looking after the same patient more than one or two days in a row” (11). On the stroke pathway, more regular team meetings were suggested to improve communications between staff, but some staff feared this would just increase their workload. Staff at both sites talked about wanting to be valued more, rather than being told “what’s wrong”. A senior hip fracture staff member said: “We’ve obviously got huge concerns for our staff because it’s a speciality you burn out in and the pressures over the last couple of years have been immense” (12). To try and alleviate this stress, the organisation provided the support of a wellbeing team, chaplain support, physiotherapy and massage services, and a drop-in clinic with a senior nurse to discuss any problems. However, several staff suggested that what was crucial to them was to address the structural and organisational issues impacting upon the provision of care that were often outside of their control, as described below.
What systems/structures and processes enable/impede individuals and teams in improving patient experiences?
Prior to the King’s Fund PFCC research being conducted, staff highlighted the considerable improvement efforts that had been made at both case study sites to improve the quality of clinical care for patients. A large amount of work had been undertaken to streamline clinical pathways and improve services, using national quality indicators and guidelines to align with efficiency and productivity requirements. The King’s Fund PFCC work built upon these developments; however, despite the previous improvement work undertaken, staff at both sites still described many factors that disempowered them and which had a considerable impact in delivering good PFCC. These issues were related to wider structural and systemic factors. Staff frequently talked about feeling powerless or struggling to address these wider structural issues in managing patient care.
Staff shortages were a major issue, compounded by having to manage some very vulnerable patients on stroke and hip fracture wards. On one hip fracture ward, 10 patients from a 30-bed ward had dementia and 6 staff were absent, including 2 on maternity leave. Staff at this site described considerable shortages with therapists who were operating 3 times over capacity. Managing the pressure of patient flow through the hospital, exacerbated by a lack of theatre capacity and shortage of beds on wards or patients ready for discharge still occupying beds, was also a major problem. On the hip fracture pathway staff felt it was not possible for them to change the lack of beds or flow problems in AE, as this issue was part of a wider system problem: “What we can’t do is influence the patients going out, from my perspective in the ED I can’t get people home faster”. The point was also made that the way health service funding worked in Wales at the time of the research may have actually exacerbated these problems as budgets stayed the same no matter how many patients came through the door, “so there’s no impetus to do more work”. Similarly, with respect to managing discharge, staff found themselves negotiating systems in caring for patients that they had little control over, but which was hugely time consuming:
“You are dependent, as an acute unit on making sure that the family makes those arrangements, that social services make those arrangements, and that there’s a space available for wherever they’re going to go (e.g. community hospitals)” (Hip fracture staff member 13).
At the time of conducting the research, one staff focus group at the Wales site found that 13 out of 26 beds on the trauma ward were being occupied by patients who were ready to go home. Patients and staff also talked about the importance of the ward environment and patients having access to things such as a day room, comfortable chairs, TV’s they did not have to pay for and facilities like access to a wheelchair to get to the hospital shop, newspapers, radio, a chiropodist, etc., which could make a big difference to a patient’s recovery, particularly for elderly patients. These were facilities that staff said in the current cost climate they often had to fundraise for. Broader structural issues also concerned the quality of the food service, noise, and ward layout leading to patients having to be moved about to ensure single-sex wards, subsequently impacting on continuity of care.
The limited resources of the hospital system particularly came to the fore when discharging patients on the stroke pathway. Patients spoke of being discharged quickly without sufficient information and, sometimes, without enough resources to be able to cope in the community. The relative of a stroke patient (17) contrasted the Trust’s “excellent” mission statement on discharge, with what happened to his wife in practice “they broke every facet of the mission statement”. Conversely, in the hospital itself, there was significant pressure for speedy discharges as reducing length of stay and ensuring that there were enough beds for new stroke patients was vital. With the hip fracture pathway, whilst most patients and relatives seemed to be mostly content with the discharge process itself, the main problems occurring seemed to be with long waits to be discharged from hospital, finding rehabilitation beds in the local areas and the complex communication and processes involved in these siuations:
“We had a patient here, she was medically fit, for 41 days. But what happens is more often than not – which is fair enough – is that patients live in their own home, you've got the family that’s caring for them, they obviously work, it’s very difficult, so then they fall. They can’t go to rehab because they’ve got dementia, so the next step then would be a nursing home, probably, but there is another process then to go through and it’s a long process … if they’re self-funding I suppose it isn’t that bad but if they need to be funded you’ve got to have meetings, a meeting with the family and the social worker, the physio, the nurses. You’ve got all this information there you’ve got to gather to send to the social worker” (Hip Fracture, senior staff member 14).
At both sites, there was an acknowledgement that staff could try to mitigate the effects on patients of systemic pressures by communicating and explaining problems and issues with patients. However, time and space for this communication was increasingly squeezed with staff who were already feeling disempowered by the organisational issues described above.
What outcome measures enable agents to understand if changes have impacted patient and family experiences of care?
The outcome measures that were being used by the two case study sites to evaluate experiences of care were found to influence and set particular limits, trajectories and priorities for improving patient care. Specific measures included patient experience and nationally introduced clinical audits and outcome measures. On the stroke pathway, this included the Safe Implementation of Treatments in Stroke audit for any patient that has undergone thrombolysis and the Sentinel Stroke National Audit Programme for any patient that had been on the stroke pathway. These audits included data such as how many patients are scanned within 1 hour, how many patients are admitted to a stroke unit within 4 hours, how many stay on the specialist stroke unit and data on discharge processes. Mortality figures and length of stay were also key measures that were carefully monitored in addition to the number of and types of complaints. On the hip fracture pathway, the main reporting indices were 30-day mortality, acute length of stay and the average time to surgery with the percentage of patients receiving surgery within 24 hours.
The King’s Fund PFCC improvement methodology required teams to identify specific project aims and a small number of locally devised before and after measures, as part of a Plan, Do, Study, Act (PDSA) cycle, to enable them to monitor their own progress on locally devised improvement projects. However, in practice, teams on both pathways defaulted to the use of the national clinical outcome measures that were already being used on the pathways, rather than develop specific PFCC improvement measures. It was therefore not possible to measure the specific impact of the PFCC improvement work. Both sites also used their own organisational patient experience surveys to evaluate patient experience; however, problems were identified with how this data was collected and managed. On the main stroke ward, the ward policy was to give questionnaires to all patients upon discharge with the aim of capturing feedback from 80% to 90% of patients. In practice, staff tended to complete the forms with patients on the ward because they were not well enough to do this on their own or, because of short staffing, the ward administrator randomly chose patients who were capable of participating. This meant that only about 15% of patient feedback was captured and the whole process of completion raised questions about the independence of the feedback, the lack of capacity of some patients to fill in the forms and support for staff in completing the process with vulnerable patients.
In the hip fracture services, similar issues also arose with the way in which patient experience measures were collected and used. The main hip fracture ward was required to hand out patient experience forms to all in-patients on the ward once a month and had to collect at least 16 (it was formally 30), out of a possible 90 forms. The data was then collated and displayed on the ward notice board, although not discussed in staff meetings. Whilst the ward sister felt that she had been able to pick up on key issues and make lots of changes as a result of this feedback, another member of staff noted that she “did not think staff generally looked at the charts on patient experience”. She thought it would be good for the feedback to be discussed at morning handover meetings, which would enable healthcare assistants and nurses to participate. The second trauma ward on the hip fracture pathway stated that they did not collect patient feedback. A staff member interviewed said: “I know we have got the patient surveys although I have to hold my hands up and say I don’t know where they are and I’ve never given one out”.
More generally, while 33 patients and 8 relatives participated in the research study (12 being very happy with their care and 21 describing a mixture of both good and poor care), none of the patients interviewed said they had been asked to complete patient feedback and experience forms as part of the process of gathering patient feedback as described above. Despite the concerns raised by interviewees, only one person had made a formal complaint, which she felt had been dealt with very negatively, “I’ve said I haven’t wanted to complain in a negative way, I’ve wanted to raise concerns so that things can be made better”. No other complaints data appeared to exist for these pathways.
These results illustrate the difficulties that the case organisations had in collecting, collating and acting on patient experience evidence and measures. The way this was being conducted would not have supported staff in evaluating patient experience in any comprehensive way. Clinical effectiveness measures still dominated the understanding of improvement work and these measures became the signposts for patient experiences; this tended to reinforce the dominance of clinical effectiveness in comparison to patient experience, when understanding and improving healthcare quality. This situation was compounded by the fact that no patients nor the public were involved in any of the hospital-based PFCC work at either of the sites.
Despite this situation, both sites described the PFCC work undertaken as supporting them to think more broadly beyond the clinical indicators being used. On the stroke pathway, an early PFCC study session enabled staff to think about the links between poor staff experience and its impact on patient experience, with further work being done to improve staff experiences. On the hip fracture pathway, staff described how new perspectives and patient-centred values emerged from the PFCC project shadowing and care process mapping. This enabled clinical staff to gain a much wider perspective on the whole service pathway from patient perspectives; this was information that the King’s Fund PFCC work expected staff to act on locally.
Patient and public involvement
A key weakness in the PFCC work was that it did not include the involvement of any patients and the public in the processes of improvement. Some staff noted that, whilst they wanted to involve patients to a greater extent, it was difficult to do this in relation to the resources, skills and time available. The study findings illustrate that, in practice, there were clearly a huge number of context issues with staff having the right infrastructure to support PFCC and involvement. One way that greater partnership working was enabled between researchers, lay members and staff in the research was to draw upon a PAR approach. This methodology allowed us to address some of the power imbalances in conducting the research through RAGs for each pathway (described in the Methodology section).
Whilst this more collaborative process greatly enriched the research design, it clearly provided a starting and not an endpoint for developing more equal collaboration. Future learning in building on this process would be to start earlier to gain the involvement of lay perspectives into the process and to ensure that methods supported the inclusion of both patients with personal experiences as well as those working for voluntary organisations and the input of a wider diversity of patients. It is also important to address hierarchies in partnership working and to ensure more input is gained from junior staff as well as senior members and from BAME and other under-represented groups.