Listening to and learning from people and communities
In our work on Understanding integration, The King’s Fund and the Picker Institute developed a guide for health and care partners to come together to better understand and learn from the views and lived experience of people and communities, in the spirit of delivering genuinely integrated care. Centred around 10 principles, the guide was designed to help systems to work to co-ordinate services around what matters to people and communities.
Over the past year, The King’s Fund has been working with NHS England and the HOPE network to design and develop projects drawing on the principles and ways of working outlined in the guide. The HOPE network provides peer learning and support opportunities for leaders within NHS trusts with responsibility for patient experience.
The work aimed to:
- co-design with sites (selected NHS trusts from around England) specific pieces of work drawing on the principles of the guide, with the aim of bringing together partners in ICSs around patient experience
- explore the enablers and the barriers to the ways of working outlined in the guide
- compare, contrast and share experiences and learnings with each other and the wider HOPE network.
Projects ranged in scale and included bringing together providers across an ICS to design a patient charter, telling the story of patient journeys across a stroke pathway, and understanding the experience of patients from diverse ethnic backgrounds. The work was led by NHS trusts, with the aim of bringing together local service providers to listen and learn from what people and communities were telling them about their experiences of care. So, what have we learnt from this work and what are the implications for how ICSs work on patient experience?
Patient experience is still not prioritised
One of the key principles of the Understanding integration guide was that if listening to and working with people and communities are to become central to the work of health and care, then they cannot be the preserve of patient experience and public engagement teams only. They need to be everyone’s business and everyone has a role to play, whether that is in listening to people and patients or acting on what is learnt. Working with the heads of patient experience, we heard there is still a long way to go before this is the case in the NHS.
I think if you were to ask the leaders in my organisation, they would say ‘patient experience is front and centre’. But I think for them, that means I crack on and do it… They’re not that aware of where their responsibility sits around the patient experience agenda.
Those working on the projects had tried to engage colleagues from across the local system with mixed success. Where there were pre-existing relationships, the work was easier to put in place, but there were still challenges around the additional resources required. Project leads were often asking busy people to take part who did not have time to devote to ICS activities. Currently, cross-system working often relies on goodwill rather than dedicated capacity, and trying to encourage ownership is difficult when people do not have the time, permission or resource to take on more work. Although partners saw the benefit in working this way, there were challenges around capacity (for example, admin support, data analysis and project management) and making resources available.
Our sites reported that clinical support is key to progress, but there was a feeling that in the NHS, patient experience is still seen predominantly as a nursing function, and it lacks buy-in from doctors. Medical directors at one site were interested and engaged but this was the exception rather than the rule.
There are medical colleagues who are more and more aware that they need to be listening to people – both patients and their staff... My hope is that there are things happening now… but it’s a really slow, long journey.
The heads of patient experience recognised that they needed leaders to acknowledge and champion the patient experience agenda, but this was still not happening in a way that would ensure that more people sat up and took notice of what patients were telling them.
We discussed how to frame the patient experience agenda in a way that would encourage key players to support and promote the work – in particular how to align it with other key priorities. One site was linking work on patient experience to the patient safety agenda, showing the link between good patient experience and patient safety. In another site, it was about linking work on patient experience with quality improvement. The rationale was that issues around safety and effectiveness were less likely to be deprioritised, so tying patient experience to these concerns could prevent it slipping further down the agenda.
One frustration that sites raised was the false distinction often made by people in the NHS between patient and public engagement, and patient experience functions. Some misrepresented patient experience as being about quantitative data from surveys, while engagement was seen as being about qualitative data. In reality, patient and public engagement and patient experience both rely on a range of different sources – from stories to surveys – to understand how people and communities experience services. There needs to be more effort to bring these different functions together, recognising what can be learnt from both and what can be done as a result.
ICSs need to provide clarity about where responsibility for patient experience sits
The sites we worked with had very different experiences of working with colleagues across their ICSs. At one site, a clear partnership model was in place. The integrated care board (ICB) had a designated lead for quality and patient experience, and the team at the trust was working closely with the lead to share and implement the findings from their project.
In another site, the ICB recognised that engagement and patient experience were linked, and there was collaboration between the teams. There was a clear sense that the ICB was prioritising this area of work, and colleagues working on the project felt supported as a result. However, even in this otherwise positive example, progress was limited as a result of staff turnover caused by the reorganisation of the ICS.
It was notable that this experience contrasted sharply with some of the other sites. In a number of cases, staff working on patient experience at NHS provider organisations were unsure who to contact within ICSs to progress their work, and they reported being given conflicting information about where responsibility for patient experience lies at ICS level. One participant had been told to reach out to the quality lead but could not establish who that was, leading them to question how high patient experience was on the ICB’s agenda.
This type of experience limits progress, as work being done below ICS level will lack the advantages that come from scaling up or from accessing the resources of the ICB and the knowledge from colleagues on integrated care partnerships.
Insight from patient experience is still not on an equal footing with other data
In Understanding integration, we argued that patient experience work should be placed on an equal footing with other data and information gathered at a system level. This would both demonstrate the importance of patient experience and recognise how it can add understanding and meaning to other collected data and information, rather than them being treated separately.
The learning from our work with the HOPE network suggests there is still a long way to go. This was particularly true of the qualitative insights being collected. One reason why patient experience struggles to get to the top of ICS agendas relates to culture. The old maxim of ‘what gets measured gets done’ reflects the existing bias across the public sector to prioritise quantitative metrics and view dashboard numbers as the best measures of quality. Understanding patient experience needs qualitative data and individual stories to make sense of the data from surveys of users – things that the NHS has a harder time processing and accepting as meaningful.
As a result, those working on patient experience can find themselves feeling isolated within the system; some of those we worked with described their role as ‘lonely’. Their work means listening to stories of increasingly difficult experiences for patients, as a system under strain fails to deliver minimum standards of care. Yet despite holding these stories, as well as data from other sources, they are often left feeling powerless to make a difference.
There has been a great deal of rhetoric around the formation of ICSs and working with people and communities. There is a real opportunity to work differently with people and communities, and for partners across health and care to come together as an ICS to hear from the populations they serve. However, our work with the five sites suggests there are still some significant challenges to overcome if this area is to become core to the business of health care systems. There are examples of great practice and a real commitment in some areas to ensure that working with people and communities is at the heart of ICSs’ work as they develop, yet too often it is not seen as a priority and still feels like an appendix.
It is perhaps not surprising that patient and user experience is not top of the list of priorities for a health and care system under unprecedented strain. More than 7 per cent of medical posts are currently vacant, and as recent waves of strikes demonstrate, the health service faces challenges if it is to retain the staff it has. Funding also remains a perennial concern: ICSs are being asked to make significant cuts to their running costs over the next few years, just as they are setting up. Combine these issues with an ever-increasing waiting list and it is easy – though not excusable – to see why systems are focusing on firefighting rather than engaging with agendas, such as patient experience , that can seem less pressing.
The problem, though, is that patient experience is pressing. Across the board there have been significant drops in reported experience across a range national patient experience surveys over recent years. Public satisfaction with the NHS is at an all-time low.
Those working with patient experience can often feel like they are holding all the insights and stories that clearly show how the system is failing some of its users, but they also feel they lack the agency and support to make a difference. Those we worked with told us that patient experience has always felt like a ‘Cinderella service’, lacking the importance placed on the other two dimensions of quality: patient safety and clinical effectiveness. Rather than seeing improvements, things are becoming worse, and patient experience lacks the emphasis that was placed on it as recently as a decade ago.
An incident from one of our sites demonstrated the emotional burden of this work. A head of patient experience had been tasked with providing patient stories to present to their trust board. They did this, but after a few meetings was told that the board needed to hear more positive stories in future. Those negative stories are still being collected but are no longer being heard, leaving the head of patient experience feeling alone with them.
There was a clear recognition across the sites that if these projects are to change how care is provided then they need senior buy-in. If working with people and communities is to move to the heart of ICSs’ work, it will require leadership and resource that is currently not always there. ICBs need to ensure there is clear oversight of patient experience work. If a site is not clear about who is the ICB lead for patient experience, there is a problem. In addition, there is a real opportunity for ICBs to consider insight from all the sources available to them – patient and public engagement, patient experience, quality improvement – to inform decision-making and improve services.
Services designed without the input of people and communities and delivered with limited focus on people’s experiences are less likely to produce good outcomes and are more likely to waste stretched resources.
There needs to be a renewed emphasis on patient experience work, both from national NHS bodies and from ICSs. Without this, there is a real risk that ICSs will end up representing yet another reincarnation of an NHS that does not prioritise the voices of the people it serves.
My wife and my own experiencies over the past few years ,both being 80 years old, and living with various health issues, have been extremely positive with both hospital and primary care services. I hear from other areas of the problems they encounter but in East Leake at the VHG practice and with Nottinghamshire University Hospitals I can only say how well our treatment has been, and all staff at all levels have have treated us in an exemplary manner.
I left the NHS 13 years ago jumping into the Voluntary Sector a babtism of fire. No heating, computers, long term contract, pay scales and a pension of 3%. I was unleashed and able to put my leadership style of compassion into care in the community without feeling weak or not a professional. Teaching the NHS and the public sector how to care is not a good starting point, I have tried and now use my own toolkit, that contains tissues, a cup of tea and a psychology diffusion pack. I feel privileged to have worked closely through all ranks and professions together with the patients and public with an aim to get to the heart of a problem. You can find it if you try hard enough,v and with the time and support needed without the fear of blame. Allowing the NHS to show they care without the threat shield, requires a whole system culture change. Managing difficult discussions with a successful outcome is a skill that requires emotional intelligence - how deep do the ripples go. Do we truly listen to all voices, with intent to make a change and a positive one. In my experience after 40 years of working at the heart of patient, public and parent care, my motto "would this be good enough for your family member” allows reciprocal feelings to unfold, with a natural emergence of respect dignity and compassion for all involved.
I feel betrayed by the NHS. I started 2 years ago with a groin problem. The receptionist said "Goodness me you never come to the surgery" Well I did that day. I have had 2 years of frustration trying to get help. I have been on endless NHS waiting lists and only now am I starting to get towards the front of the queue. I have deteriorated and so badly that I have funded a replacement hip, physiotherapy and 2 cataracts. My other hip needs replacing and I am damned if I will fund that. The pain is excruciating and other parts of my body are deteriorating even more but I still have of months of waiting for a telephone pain clinic appointment, left hip replacement.........There is much more . Can never get through the GP telephone system to get in the queue - we are experiencing execessive calls today please ring back later so I can't even join a queue . NHS stands for NO HEALTH SERVICE. How many of we elderly are having to spend our life savings. This is a public disgrace.
Agree with everything said. But I think there's another angle. For me, public/patient engagement by ICBs isn't just about them asking us for views. It's also about them being open and transparent about what they do, so we can be informed and feed back to them - perhaps on topics or issues they are not soliciting input on. It is dispiriting that there is no direction on this from the top: my recent blogs for nhsnetworks about the Fuller and Hewitt reports highlight the lack of attention paid by either to public/patient/community engagement
Twenty years into retirement and 82 years old my wife and I feel abandoned by the NHS. We both have multiple complaints, and have to wait to see a GP, we see a different GP every time who has little knowledge of our medical history, so no one is overseeing our conditions. Any specialist referrals are months away. We cannot think of anyone who cares about our care. The doctors and nurses whom we see are clearly kind and doing their best, but the overload and pressure in the system mean that they cannot offer the care which we have experienced in the past.