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This is a guest blog.
Guest authors bring different perspectives and diverse voices to our blog. They do not always represent the views of The King’s Fund.

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How can the NHS work effectively with patients and the public?

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In a guest blog for our NHS and the public project, Ceinwen Giles, Founding Director at Shine Cancer Support, asks what patient involvement could mean for the NHS.

Eight years ago, the NHS saved my life.

Diagnosed with Stage 4 non-Hodgkin lymphoma, I was critically ill and unable to care for myself, let alone my six-week-old daughter. Within weeks of commencing an intensive course of chemotherapy, I was able to get out of bed, shower and – excitingly – brush my teeth. I felt like Lazarus, risen from the dead. Today, I remain disease-free, an NHS success story rooted in scientific innovation in cancer treatment and good-quality care.

Like many other patients helped by the NHS, I came away from my experience wanting to ‘give back’. I spent six months in the hospital and still receive follow up treatment on a monthly basis. You see a lot in six months in a hospital – both the truly good and the fantastically awful. Compassionate nurses sat with me while I cried, desperately wishing someone would wave a magic wand and make me better. I was also accused of ‘refusing treatment’ when staff tried to give me a duplicate dose of medication, and I saw numerous mistakes in my notes that no one was interested in correcting. There was much that I felt could be improved, and I threw myself enthusiastically into joining various patient committees and groups.

Now, eight years later, I find myself – like many other patients I know – increasingly tired, and often cynical, of ‘patient involvement’. I’ve spent a lot of time at meetings where the views of patients may be trumpeted as ‘valuable’ and ‘insightful’ but have ultimately gone nowhere. I’ve been a member of committees that were established to improve services only to find that the services or the committee (or both) are to be changed in a re-organisation that means that almost everything needs to start again from scratch. Recently, I contacted NHS Improvement about a non-executive position at a local NHS trust as a ‘patient experience adviser’. I was told that my job (as director of a small cancer charity) precluded me from applying due to the risk of ‘lobbying’ and that they wanted someone who was closer to their own ‘experience’.  Ironically, I’ve been turned down for other positions for precisely the opposite reason – I was ‘too close’ to my own experience and wouldn’t be able to adequately represent the views of others.

What does this tell us about the relationship between the NHS and its patients? My main thought is that there is widespread confusion about what exactly is to be done with patients. A professor I once knew remarked that working at a university ‘would be a great job if there weren’t any students to deal with’; I’ve often wondered if the powers that be in health care feel the same way about patients.

'A professor I once knew remarked that working at a university ‘would be a great job if there weren’t any students to deal with’; I’ve often wondered if the powers that be in health care feel the same way about patients.'

Despite years of attempts at meaningful patient involvement, in 2014, the NHS five year forward view noted that the ‘health service has been prone to operating a “factory” model of care and repair, with limited engagement with the wider community, [and] a short-sighted approach to partnerships…’.  As a result, the report argued that ‘the renewable energy represented by patients and communities’ had not been fully harnessed. A 2017 update on the Forward View stated, ‘progress on our priorities and addressing the challenges the NHS faces over the next two years cannot be done without genuine involvement of patients and communities’. This genuine involvement, however, has often failed to materialise; as many people involved in the development of sustainability and transformation partnerships will tell you, patients have often been absent from discussions surrounding their structure, formation and impact.

There are many reasons given for the absence of good-quality, meaningful patient and public engagement: it’s time consuming, it’s expensive, it’s difficult, and it can be deeply challenging and uncomfortable. Medicine remains a largely top-down profession in which health care is ‘delivered’ and patients are supposed to do what they’re told. Unfortunately, while this may work for an acute illness such as a sore throat, it works less well in a complex health system where people are living longer lives, and with increasing chronic illness. Given the rising democratisation of knowledge and the growing availability of online information and support, it is also difficult see how power, control and leadership can continue to rest solely at the top. As we move further into the 21st century, surely it is not good enough for hospital boards to be without proper patient representation, or for major policy changes to take place without the involvement of those who are most affected?

To achieve real change, we need a much clearer understanding of exactly how a seemingly monolithic health care system can work with patients as equals at the personal, institutional and system levels. We need to stop lumping together terms such as ‘patient experience’ and ‘patient involvement’ and become clearer about what different types of involvement can achieve. Patient involvement in a volunteer tea-trolley service requires, and can achieve, vastly different things than having a paid patient director overseeing services – but both are important. Too often, however, neither are adequately defined, managed or supported.

'Patient involvement in a volunteer tea-trolley service requires, and can achieve, vastly different things than having a paid patient director overseeing services – but both are important.'

Perhaps most importantly, to achieve transformational change I believe that we need to set out a much clearer vision of how patients can contribute at all levels of the health system, while admitting that getting there will be difficult, with many challenges along the way. Working with patients and the public requires patience, skill, creativity, and a willingness to experiment. Such an approach is in direct opposition to a target-driven NHS culture that emphasises the continual management of risk. This limits the development of meaningful collaboration between health care practitioners and patients because the challenges experienced along the way – an integral part of trying something new and different – are too often seen as an indication of failure rather than hurdles that might be creatively overcome.

When waiting times are increasing, A&E targets are being missed, and the media labels patients ‘bed blockers’ or ‘time-wasters’, the relationship between patients and the NHS can feel increasingly fraught, but it’s not broken. After all, we need each other, and despite a media narrative of the ‘failing’ NHS, public and patient support for the service remains high. But we do need the NHS to listen to patients and to work with us more – to see us as part of the solution, rather than, as the professor might have said, an inconvenience that gets in the way of the real work of delivering health care.