Over the past 20 years there has been a growing emphasis within health and care on ensuring that user voices are heard. People with longer memories will remember Lord Darzi, in the 2008 report High quality care for all, putting patient experience on an equal footing with safety and effectiveness in the definition of quality.
In 2013, the Francis Inquiry on Mid Staffs found ‘A culture focused on doing the system’s business – not that of the patients’ and concluded that ‘There must be real involvement of patients and the public in all that is done.’ The Five Year Forward View, published by NHS England in 2014 devoted a whole chapter to ‘A new relationship with patients and communities’ arguing that ’the health service has been prone to operating a “factory” model of care and repair, with limited engagement with the wider community_’_ before going on to say that communities and citizens need to be directly involved in decisions about the future of health and care services.
More recently, the advent of integrated care systems is being seen as an opportunity to work more closely with the communities they serve. And yet, despite all this, work with people and communities, can still feel like ‘a nice to have’ rather than being core to the business of the health and care system. For those of us working on this agenda it can feel like pushing a rock up a hill.
It is rare to find anyone working in health and care who disputes the importance of this work but if judged by actions rather than words there is still a long way to go. In a system under increasing pressure, this work is too often seen as expendable when times are hard. Health and care systems like the one The King’s Fund documented in Wigan that prioritise a citizen-led approach still seem like the exception rather than the rule.
There is still a long way to go before systems recognise that they do not hold the answers to many of the issues they face and that work with the communities they serve might actually be part of the answer. Perhaps more needs to be done to make the case for this work; not just because this work is the right thing to do but because it will make services better.
'There are strong moral and ethical reasons for ensuring that people’s and communities’ voices are heard.'
There are strong moral and ethical reasons for ensuring that people’s and communities’ voices are heard: people have the right to have their say over the public services they pay for. But the case for doing this work is as much as a business decision as anything else. Services will be more effective, more efficient and safer if users’ voices are built into how they are designed, monitored and evaluated. There are so many examples of services that have been designed, leaflets written, admin processes put in place with little to no input from users of services and then people scratch their heads wondering why they do not seem to have the desired impact.
It is extraordinary that this is still the case. If you want to understand why people are frequently readmitting to A&E, why co-ordination of care is not working or why people are struggling to access services then the answer is fairly obvious – go and ask them, and ask for their help in designing services that will meet their needs. Put starkly it is hard to understand how services are designed without user involvement, that those in charge think they know better than the people whose needs they are there to meet. In any other service industry this could and would not happen:
'In other sectors of the economy, there are severe consequences for knowing so little about what people you serve want. It’s called bankruptcy. In healthcare it’s called unsustainability.'
Dr Al Mulley, MD for Global Health Care Delivery Science, the Dartmouth Institute
The health and care service is under huge strain right now. The pressure coming down on those managing and delivering services is immense. We have heard the argument that when time is of the essence, work with people and communities can slow progress. But there is a less haste more speed argument here. We would argue that not building in user voice is actually counterproductive and costlier in the longer term. One participant in The King’s Fund’s recent work on partnering with disabled people summed it up nicely:
'(Disabled people’s groups) were consulted on quite a few projects and what was being proposed was not accessible for disabled people, and we said, ‘If you go ahead with this [as is is], it's going to cost you money once you've done it, to redo it, to make it fit for disabled people.’ So if you engage with us at the development stage then you might save money, so that was actually an easy win.'
NHS non-executive director
Health and care systems have to move to a place where this work is routine and core to everything they do. How can you make a difference to people’s lives if you don’t understand those lives? From designing new services to building trust with communities this area of work is too important to remain a ‘nice to have’.