‘We value your feedback’: what patient experience really tells us
The emphasis on feedback from service users is relatively new, but central to improving care
The emphasis on feedback from service users is relatively new, but central to improving care
When the patient feedback organisation now known as Care Opinion started up more than a decade ago, its chief executive James Munro took a bit of an earbashing.
NHS bodies that were criticised over aspects of patient care or experience were not, on the whole, happy that these comments were being made public and some reacted crossly. However, 13 years on and this kind of feedback – and focus on patient experience – is more routine.
‘In 2005, after the first couple of patient stories were published, the phone rang from trusts saying that what we were doing was illegal and that we should take it down. There were quite strong reactions,’ says Dr Munro. ‘We haven’t had the sort of phone call where people are shouting at us for a long time.’
The birth of Care Opinion – previously called Patient Opinion – was part of the growth in mechanisms to focus on the experience of patients, as well as on their clinical outcomes, that began in the late 1990s and early 2000s.
Since then, we have seen a growing prioritisation of patient experience, with initiatives such as inpatient and primary care surveys, and the NHS England Friends and Family Test, which aims to highlight good and poor patient experiences.
Such initiatives now seem embedded in the health service, but this wasn’t always the case, says Dan Wellings, former head of insight and feedback at NHS England and now a senior fellow at the King’s Fund.
‘The patient experience field is still relatively young,' he says. 'You could argue that it wasn’t seen as a priority until the early 2000s.'
What the findings tell us
The field may be young, but what does it show us?
In June, the Care Quality Commission published the results of its latest NHS adult inpatient survey, which looked at the experience of 72,778 people discharged from an NHS acute hospital in England in July 2017.
As usual with such surveys, there was a mix of positive and negative findings. For example, it found that the quality of communication between doctors and nurses and patients continued to improve, but preparation for leaving hospital still leaves something to be desired.
At the time, Mr Wellings commented that the findings showed that patient experience in hospitals was ‘holding up remarkably well’ and that staff were, for the most part, managing to find ways to provide a positive experience for patients in the face of severe constraints on funding and staffing levels.
Speaking to Nursing Standard, he suggests several reasons for this. ‘Staff are making every effort despite the pressure they are under – it could be that staff are absorbing the shock,’ he says.
Surveys are only part of the picture
‘Also, it’s hard to measure, but it’s possible that people have responded in the way they have because they know staff are under pressure, so they have adjusted their expectations,’ he adds.
In his previous job, Mr Wellings and his team were responsible for commissioning and running a number of national surveys in England, including the GP patient survey, cancer patient survey and staff survey.
‘Patient stories are important... you need the qualitative as well as the quantitative data to understand people’s experiences’
Dan Wellings, senior fellow at the King’s Fund
But he believes that surveys are only part of the patient experience picture. An overall rating of ‘good’ may effectively smooth out the peaks and troughs of a patient’s experience within a hospital, or even in one ward or department.
‘That’s where patient stories are important,’ he says. ‘People might say “for the most part it was fine, but…”. You need the qualitative as well as the quantitative data to understand people’s experiences.’
The big challenge for the future will be ensuring that patients have a good experience across the whole health and care system, he says. For example, a good experience should continue when a patient is discharged to the community. To achieve this, organisations and professionals need to work together effectively, based on what users tell them about what works well and not so well.
Bev Fitzsimons is head of improvement at the Point of Care Foundation, an independent charity with a mission to ‘humanise’ healthcare. She believes that a variety of ‘intelligence’ is needed to drive real improvements in patient experience.
‘We need less collection of similar types of data and more variety, including patient and staff stories, closer to the action, which help staff and patients to work on things that need improvement,’ she says.
‘The organisations that bring their efforts together on quality and patients’ experience and align these with the activities of nurses on the wards, seem to do better at focusing on patient experience as part of the quality agenda,' she says.
Nurses across an organisation are vital in creating the circumstances that enable a positive patient experience.
‘Making the time to undertake these activities in the face of relentless clinical pressures is hard’
Bev Fitzsimons, head of improvement, Point of Care Foundation
‘Nurse leaders play a pivotal role,’ says Ms Fitzsimons. ‘They are critical in creating the conditions for this “bottom up” work to happen. This means ensuring the organisation pays attention to this sort of work, and that people have the head space to be able to take it forward.’
The Point of Care Foundation’s Sweeney programme is a patient-centred improvement initiative in which participants use the ‘lens’ of patients’ and families’ experiences, via methods such as observation, interviewing and shadowing. Working in multidisciplinary teams, they try to find creative solutions to identified problems.
‘People say it reconnects them with the reason for going into the profession in the first place,’ says Ms Fitzsimons.
But there are barriers to implementing this. ‘Making the time to undertake these activities in the face of relentless clinical pressures is hard, and satisfying external requirements [such as the Friends and Family Test] while enabling people to work on what they want to do locally is a challenge.’
‘If we hadn’t asked, we might not have identified training needs’
As a learning disability nurse with 35 years’ experience, Linda Phillips knows that general health services are not always set up to meet the needs of her patient group.
As the mum of a daughter with Down’s syndrome and complex needs, she also has a personal motivation to improve services. But she is acutely aware that even with this level of professional and parental expertise, she doesn’t hold all the answers for how to get things right.
‘People with learning disabilities must be involved in making these improvements,’ she says. ‘There’s no point in us saying what we think should happen – it’s got to come from the individual.’
‘People’s experience has an impact on how they regard the health service and how they engage with services, which is important for their health and well-being’
Around 18 months ago, Ms Phillips, then a community learning disability nurse in Llanelli, south west Wales, led a project on improving the experience of hospital care for people with a learning disability.
Part of the Foundation of Nursing Studies Patients First programme, the project for Hywel Dda University Health Board involved working with people with learning disabilities to develop and deliver learning sessions for ward staff in a district general hospital.
Ward staff, people with learning disabilities, patients and carers were asked what was important to them, and this information was used to develop the learning sessions.
The main issues identified included communication and challenging behaviour, and the training covered strategies such as finding out more about the patient and what he or she wants, talking to carers, and seeking support when required.
‘People’s experience has an impact on how they regard the health service and how they engage with services, which is important for their health and well-being,’ says Ms Phillips.
‘The staff survey showed that most felt they needed training. But learning disability isn’t high on the agenda and they might not have identified the training need if we hadn’t asked them.’
Foundation of Nursing Studies (FoNS) practice development facilitator Jo Odell says that staff well-being is intrinsically linked with patient experience, and that organisations should take the two issues equally seriously. This means doing more than simply running occasional staff well-being events: ‘A head massage is nice, but if staff are under stress then it is going to affect retention.’
‘A good relationship between the manager and the team, where they talk to each other, is better for staff well-being and makes the patient experience better.’
Ms Odell believes it is ‘everybody’s job’ to collect patient experience. Similarly, everyone has a role in trying to improve it. Programmes such as FoNS Inspire Improvement, and the previous Patients’ First initiative, are helping nurses to innovate and improve practice cultures, she says.
Sparking a conversation
While giving and receiving feedback on services has become normalised, that doesn’t mean everyone is happy about it, as Care Opinion’s Dr Munro knows only too well.
‘Some people say they don’t know what to do with the stories,’ he says. ‘Some say they like the positive stories but the negative ones are bad for morale. But people are gradually starting to feel they can learn from all the stories, whether positive or negative.’
‘It isn’t just that patient experience is important as part of care. Healthcare can’t work without people feeling listened to and taken seriously’
Dr Monro, Care Opinion
He says the beauty of Care Opinion is the conversation it sparks between patients, families and staff at a given organisation, who can reply to comments and report on changes made as a result. These can include apparently small things that make a big difference to patient experience, and can also be profoundly moving.
One 93-year-old patient, in hospital with a broken leg, described how nurses at the Biggart Hospital in Ayrshire, Scotland, ensured that he and his wife, who was dying, could be cared for together by creating a ‘double’ hospital room.
More recently, staff at Forth Valley Royal Hospital, also in Scotland, were able to reassure a patient kept awake by noisy bins that soft-closing ones were on order.
No longer an ‘optional extra’
‘That story about end of life care has been read more than 50,000 times,’ says Dr Munro. ‘We love seeing stories about extraordinary care. But we also love seeing responses and conversations developing.
‘It’s important to involve staff. People don’t want responses from the head of complaints – they want the feedback to get to the people they have met.’
While he says it is ‘easy to be despondent’ because progress hasn’t been faster, it’s important to remember that the emphasis on patient experience has come a long way.
‘People used to talk about “patient satisfaction” but it wasn’t a core element of quality healthcare – it was seen as an optional extra,’ says Dr Munro.
‘It isn’t just that patient experience is important as part of care, but that healthcare can’t work without people feeling listened to and taken seriously,' he says.
People who don’t feel listened to are less likely to take medication, for example, potentially worsening their condition and putting more pressure on the NHS. ‘You can’t separate “clinical” and “patient experience”,’ he says.
End of life care – from the patient’s perspective
According to nurse Lorraine Motuel, the question that must be at the heart of every single project the health service undertakes is, where is the patient?
‘Whether it’s a project about sepsis, end of life care or anything else, that’s the simple question that you have to answer,’ she says.
Ms Motuel, pictured right, who is now quality and safety improvement lead at North Bristol NHS Trust, was part of an award-winning project to improve end of life care.
Working with the Point of Care Foundation, the trust developed the Purple Butterfly project to support staff who were not experts in palliative care, to ensure the experience of patients and their loved ones was as good as possible.
Notable elements of the project include Purple Butterfly trolleys containing information and equipment to support the care of patients at the end of life, such as signage for doors (a purple butterfly) and relevant paperwork. The project began in one complex medical ward at the instigation of ward sister Emma Parslow and has now been rolled out across the trust.
‘Staff are aware of what it means when there is a purple butterfly on someone’s door – the porters know not to call out to their mate at the end of the corridor’
As part of the development process, a team including Ms Motuel ‘shadowed’ patients who were dying to get perspective of their experience. This led to the formation of the Purple Butterfly menu, which allows patients who are dying to order the ‘comfort food’ they want, in the amounts they want, when they want it.
‘A lady I was shadowing told me she’d lived through the war and rationing – she’d been an evacuee. She found the food portions overwhelming, and then she felt guilty because she was leaving food when people were starving,’ says Ms Motuel. ‘I told this story to the board, and the facilities staff said they could do a Purple Butterfly menu.’
Patients and families support the changes, adds Ms Motuel. ‘One of the best things is that everyone is so willing to tell you about the service. And staff are aware of what it means when there is a Purple Butterfly on someone’s door – the porters know not to call out to their mate at the end of the corridor.’
Jennifer Trueland is a health journalist