Public confidence in the NHS is at an all time low (1). And even when people can access the service, national surveys tell us that their experiences of NHS services are deteriorating (2). 

Here we make a simple plea: that all aspects of patient experience – not just their experience of accessing services – is taken seriously. 

We say this because politicians tend to play it safe and follow public opinion on the NHS. When the public are asked what they most care about, it is invariably shorter waiting times for treatment and more doctors and nurses (3). 

More funding and political energy then goes into efforts to cut NHS waiting times and increase system capacity. See the prominence of cutting waiting lists to the Prime Minister’s five headline policy pledges and the investment in the Government’s NHS workforce plan (4). 

Such a transactional approach to health policy is increasingly inadequate. The backlogs of care and levels of unmet need require a radical re-orientation of the political-system-public relationship. 

This needs to involve a complete step-change in how patients are engaged in their care. Greater ownership of their medical information, more involvement in managing their health and care, better care coordination, and collection and routine use of patient feedback all present opportunities to improve care quality at very low cost (5). 

Change is coming

The public’s relationship with the NHS and their demands for more responsiveness, personalisation and digitisation mirror their experiences of interacting with other services in their daily lives. There is a growing realisation that one more top-down push on waiting lists won’t solve the health system’s problems and that we need patients and the public to be active participants in their care. This means a significant shift in the way the NHS goes about its business (6).

We know how to do this but we struggle to do so on a system-wide level. Sir Derek Wanless challenged the system to support the public to become fully engaged in managing their health in 2002 (7), and Lord Darzi drew attention to the importance of patient engagement and experience in 2008 (8). 

To support this transformation, the NHS in England now collects seven national patient experience surveys on an annual basis, but what do healthcare organisations do with the data?  

At a national level, the deterioration in patient experience is clear but what is being done locally to address it? Multiple public inquiries into healthcare failures have shown us time and again that treating patients with dignity and respect, keeping them informed and involving them in decisions are critical elements of a high quality service and core to the safety agenda (9).

So why do we have a problem? We believe there are a number of reasons why patient experience isn’t taken as seriously as it deserves:

·       Provider organisations are, in general, paid for activity rather than experience or outcomes

·       Other than waiting time data, experience is seen as an optional extra and not as important as safety or effectiveness

·       Survey data are core components of CQC inspections but otherwise there is no incentive for providers to improve experience 

·       Most healthcare organisations are in a state of permanent crisis and struggle to prioritise patient experience against the myriad of other priorities.

So, what needs to happen?

1. At a national level, politicians and policy makers should rebalance system performance measurement to take greater account of the principles of patient partnership, shared decision making and other elements of patient experience (10)
2. Policy makers should increase investment in ways to collect and use qualitative feedback from patients, which can help add a further layer of insight to routinely collected national survey data
3. Providers should ‘know their data’, understand their performance in relation to similar providers and be incentivised to improve their performance. This should be reported annually in their Quality Accounts
4. Leaders in Integrated Care Systems need to hold providers to account for poor performance and ICSs should employ teams of patient advocates and improvement advisors to support provider improvement efforts. Improvement should focus on the three ‘Darzi’ domains of quality and not separate out experience from safety and effectiveness
5. The next Government should use the next update to the NHS Constitution to engage widely with patients and the public on building a health system that is more responsive and engaged with patient feedback.

At a time when services and staff are so stretched, it might feel out of touch for us to call for more focus and investment in improving patient experience. We argue the opposite: now is precisely the time to act. The warning signs are there and clear to see. It has never been more important to listen to and act on the experience of patients.

Alf Collins, Trustee the Patients Association, Freelance Health Consultant, Richard Sloggett, Programme Director Future Health Research