Improving patients’ experiences and delivering “patient-centred” care is central to Lord Darzi’s vision for the NHS. But what exactly does it feel like to be on the receiving end of care in the UK?
Moreover, how can the NHS move from being a service that does things to its patients to one that works with patients to better support their needs? LOUISE FRAMPTON reports.
In recent years, there has been a shift towards increasing patient involvement in decisions over the treatment they receive and how it is delivered, as well as obtaining patients’ views on the quality of care being provided though schemes such as PROMs (Patient Reported Outcome Measures). Although a Healthcare Commission report1 on public and patient involvement recently highlighted positive examples of healthcare providers listening and responding to patients, many patients and service users said they felt their views were not listened to or properly acted on. Few Trusts involved in the study could demonstrate that they routinely took account of people’s views in their decision-making. When the Commission asked organisations what changes they had made to services as a result of people’s views, it found people are least likely to influence areas such as quality of clinical care or choice of services provided in the local area. The study also showed that people in vulnerable circumstances or in poorest health often found it hardest to get their views and experiences heard by health services. Anna Walker, the Commission’s chief executive, said: “There has been a sustained effort in recent years to increase the involvement of patients and the public in healthcare, but what we need now is to take the next step. Patients want action to be taken in response to their concerns, and we can see that this is not always happening. “The current standards require health and social care providers to ‘engage’ with patients and service users. Organisations now need to make a final push and really act on the information given to them by patients and the public to improve services for the local community. Events at Mid-Staffordshire show what can happen when this does not occur.” The Commission found that most Trusts were increasing efforts to involve patients and the public and that people have influenced healthcare in important ways as a result. Patients and the public have been able to drive improvements in areas such as: the quality of information about services; appointment systems; opening hours; car parking and food choices. However, the review showed many healthcare organisations involved in the study were not doing enough to ensure people’s views had an impact on services. Patients and service users involved in the study generally felt they did not have enough say in their health services. They said they wanted more information about how to give their views and what changes are made as a result of their contributions. The Commission recommended that Trusts should strengthen the culture of being open and responsive with local people and give feedback on how their contribution has improved services. Patients and service users involved in the study also said they experienced problems when trying to make their views heard. Themes they identified included: poor communication; lack of openness; poorly designed local surveys and questionnaires; not enough opportunities to discuss views in an environment where they felt comfortable; no sense of NHS Trusts building a relationship with them over time. One in four comments from patient groups on NHS Trusts’ performance against the relevant core standard in the annual health check were negative. Most of these (80%) were about Trusts failing to seek the views of patients and the public. About 50% were about how far, if at all, their views were taken into account. Most Trusts could provide some examples of using people’s views, but few demonstrated they routinely took account of them when planning and improving services. The Commission recommended that Trusts should be able to demonstrate that people are influencing their major service and commissioning decisions. Most Trusts recognised they did not do enough to use the views of those in the poorest health or most in need of their services, and identified specific groups. The Commission found groups least likely to be heard included: black and minority ethnic communities, older people, people with learning disabilities, disabled people, children and young people. The watchdog urged healthcare organisations to increase efforts to reach these groups. An initiative called “experienced-based design” (EBD) is responding to some of the issues raised by the study, taking the notion of “patientcentred” care one step further by assessing how services can be improved from the patient’s point of view – as well as staff. Seemingly small changes can make a big difference to patients’ dignity and their overall experience, yet often sources of patient distress, discomfort and embarrassment are not immediately obvious. Tasked with delivering care within a pressurised, target-driven environment, it is often difficult for staff to take time out to view the care being delivered through the patient’s eyes. EBD is being championed by organisations such as the NHS Institute for Innovation and Improvement and the King’s Fund. The goal is to redesign services by listening to how patients feel about the care they receive, but the most surprising aspect of the initiative is the fact that often the solutions can be implemented, immediately, at little or no cost. To aid the redesign of services, the NHS Institute for Innovation and Improvement has launched a guide and set of tools to show staff how they can work more effectively with patients to understand their needs. The guide was developed following a number of pilot schemes, rolled out across the country, which resulted in significant improvements in areas such as dignity, safety, waiting and patient information. Lynne Maher, head of innovation practice at the NHS Institute, explained: “There has been an ambition in the health service, for some years, to involve patients more. One of the Department of Health’s policy documents, Creating a patient-led NHS: Delivering the NHS Improvement Plan, identified a need for a shift from professionals leading the service to having a more patient-led NHS. “There has been some progress, including the introduction of patient forums and service improvement projects that have canvassed patients for their opinions. However, the Healthcare Commission report shows that being an NHS patient is still an all too frustrating experience. We considered whether there was something else we could do to ensure the service engages with patients to make it a better experience. We started by identifying other industries which do this well; then examined the EBD methodologies applied to services such as call centres and hotels, for example, where efforts have been made to improve satisfaction.” She added that the EBD approach is at its most powerful when applied to healthcare because people often feel at their most vulnerable when they need NHS services.
Pilot studies
“Feedback from our pilot sites has been overwhelmingly positive,” she continued. “Finding out how patients feel about the service has helped Trusts to make huge differences to patient care and even reduce unnecessary costs.” The first of the pilot projects took place at the Luton and Dunstable Hospital. The Trust decided to pilot EBD in the head and neck cancer service and began by conducting in-depth interviews between January and March 2006 with patients, carers and staff. The service was already considered to be excellent in terms of clinical outcome and was receiving 98% satisfaction rates. However, staff and patients identified the “touch points” or “moments of truth” which had shaped their experiences – the highpoints and the low points of interaction with the service. Patients and staff worked together to redesign these experiences (including staff from every aspect of the head and neck service, such as receptionists, care assistants, consultants, therapists and nursing staff). The joint staff/patient group came up with 43 different improvements to the efficiency, safety and overall patient experience of the service. Two changes directly improved the efficiency of the head and neck service, four improved patient safety and 37 improved the overall patient experience. The improvements ranged from relatively simple things, such as rearranging the chairs in the outpatients’ clinic and spacing appointment times to reduce overcrowding/lengthy waits, to training more ward staff to reinsert dislodged feeding tubes. There are better information and support mechanisms now at every point on the patient journey. The patients themselves have become a resource and have rewritten some of the information leaflets. Patients who participated in the first round of improvement activity have helped in gathering stories from newer patients to check whether their experiences are now more positive. Key to the success of the initiative was finding innovative ways for patients and staff to work together. The experiences were captured through patients telling stories, either verbally or through story boards. Patients also found the medium of film to be a powerful way to share their experiences. When the care team saw the films, they reported a “stronger empathy towards the deeper needs of patients” and felt compelled to make improvements. “One of the most interesting story boards was one from a patient who, instead of depicting the service itself, outlined the difficulties he experienced when returning home. It gave a different insight into how the Trust could make his life easier between visits, which was important to his overall experience,” commented Lynne Maher. The Trust found that one of the biggest challenges was to identify the patients to be involved, to choose the right time to involve them, to be sensitive to them and to give them time to reflect on their experiences before helping them share their stories with staff. However, an additional outcome has been the fostering of a strong sense of community between patients, carers and staff, and the Trust has since decided to extend this way of working to new areas such emergency and short stay care.
Using video feedback
The Royal Bolton Hospital NHS Foundation Trust introduced the “Bolton Improving Care System” (BICS) to become more effective at delivering what patients value and find important. While there had been some notable successes in improving patient pathways and reducing mortality rates, the Trust recognised that it needed to go further. The next step was to work in partnership with patients to improve their experiences. Joanne Bolger, senior BICS facilitator, commented: “Improving the patient experience is critical. It doesn’t matter how many targets we meet if we can’t get this aspect of care right. At Bolton, we’re good at involving patients but we don’t always actively encourage them to participate. We had heard about experience based design via the Fractured Neck of Femur Network2 and felt it would help us to build on the success of BICS. EBD is a way of capturing and understanding how patients actually feel. By involving patients in co-designing services we can use these experiences to improve processes, communications, attitudes or environments. It is about moving from being patient-centred to being patient-driven.” The Bolton team concentrated initially on orthopaedics. It began by handing out diaries to patients having elective joint replacements asking them to record how they felt at each stage of their journey. While this material was valuable, the team felt it would be even more powerful to hear the patients recounting their experiences and the next stage was to invite these patients to be filmed. Filming took place in the hospital or the patients’ own homes. There was no formal interview structure. Patients were simply invited to talk about what they remembered and how it made them feel. The films were then edited and shown to staff over four sessions. Staff reactions were filmed using a Big Brother-style diary room format. Elizabeth Patel, a specialist nurse who played a leading role in the work described the effect that the patient videos had on staff: “From the start of this project, I don’t think any of us involved could have foreseen the powerful impact it would have on patients, staff and the wider Trust. The sessions we ran allowed us to work with staff to understand the impact of their interactions with patients, some examples of good practice and some where we could do better to improve the patient experience.” Staff and patients worked together to develop ideas that could improve experiences for patients. Suggestions varied widely, from developing a “Top 10 Tips” for patients undergoing joint surgery, written and compiled by other patients, through to improving pain control and setting up an informal patient support group. From watching the videos, staff learned that the practicalities of leaving the hospital after surgery were particularly difficult for patients, with many struggling to get into the passenger seat of a car and not knowing what to do with the wheelchair once they were in the car. In response, all patients now practise getting in and out of a car before they leave the ward and are accompanied to their vehicle by a nurse or physiotherapist. Many other improvements are still being implemented and the team plans to remain in contact with patients so that they can continue to be involved in development work. Such has been the success of the EBD work in orthopaedics, it is now being rolled out across other departments. The Wrightington, Wigan and Leigh NHS Trust also used a Big Brother-style “diary room” to encourage patients to share their experiences. The suggestions led to direct improvements, including: investment in additional genito-urinary medicine (GUM) clinics to reduce waiting times; building a dedicated chute between the emergency floor and pathology lab to decrease the waiting time for test results; and developing a new patient information sheet for the elderly care ward, giving useful numbers for patients or relatives once discharged.
Dignity in care
EBD has also been particularly effective at improving dignity in care and ensuring services feel less “dehumanising”, according to Lynne Maher. She cited an example where patients visiting a cancer clinic were being weighed in a public area of the waiting room. “We asked the patients ‘how did it make them feel?’ They found it very embarrassing and said they felt anxious and uncomfortable. As a result, the weighing scales were immediately moved into a private area. Simple changes like this are quick and easy to implement but mean a great deal to patients,” she commented. Furthermore, the patients’ feedback circulated around the rest of the organisation so that, by the end of the following morning, scales had been moved throughout the whole of the Trust. “The Institute did not pass on this information – the staff spontaneously responded to the findings and exchanged their insight into patient feedback, throughout the Trust,” she continued. She also highlighted a case where an elderly female patent needed radiotherapy. The patient explained that she had been greeted by a male staff member who asked her to remove her top. However, as she was rather nervous and embarrassed, she asked if there was a gown she could put on. The clinician replied: “Don’t worry – I’ve seen it all before”, which she said “made her cringe”. Although she “knew where he was coming from”, she said: “He hadn’t seen me before – only my husband had.” She explained that the experience had made her feel uncomfortable and vulnerable. Stroke patients also described how difficult and undignified their experience was when visiting the bathroom. Although they had recovered to the stage that they could walk to the toilet facilities, the paper dispenser for some patients was located on the side of the body affected by stroke. Patients felt unsafe and unstable when reaching across and there was one incident of falling. One patient reported having to call for assistance which they found embarrassing. The problem was easily remedied by installing toilet roll holders on both sides in all toilets, to meet the needs of patients with residual weakness on differing sides of their body. Waiting rooms at South Tees Hospital NHS Trust were also reorganised so that chairs were no longer back-to-back, but positioned to offer opportunities for social interaction. Patients said this made the experience more “human” and they liked the fact that they could chat with other patients. “These changes could be made very quickly and significantly improve patients’ experiences,” said Lynne Maher. “This feedback resonates with staff in a way that I have never experienced before and I have worked with the NHS all of my adult life. It really motivates staff into action.” She added that there was a great deal of positive comment in relation to “caring”. Patients made comments such as: “It really made a difference when the nurse held my hand,” and: “I could tell the consultant knew everything about me and had read my notes.” This was equally important – making staff feel more positive, rewarded and empowered, she concluded.
References
1 Listening, learning, working together?: A national study of how well healthcare organisations engage local people in planning and improving their services. Healthcare Commisson, March 2009. 2 Part of the Delivering Through Improvement Chief Executives network supported by the NHS Institute.
