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

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Part of The public and the NHS

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. Ceinwen is also a member of The King’s Fund’s General Advisory Council.

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.


john mortimer

Service and business designer,
Impro Consulting
Comment date
11 April 2018

it is an interesting and sad article to read. I too have become frustrated at the inability for the NHS to understand and effect real change, The rhetoric and funds continue to be poured into innovation in the NHS, and that had almost no real sustained effect. It has come to the point where I dont even want to work in the NHS anymore.
Every patients has an opportunity to contribute to helping to define the NHS, and that can happen at every interaction with a patient. It is when the NHS applies standardised approaches, and focus on the wrong things, that they feel the need to remedy this by having patient participation. Participation and engagement can and should be the default. It certainly was when I was involved, and the results are a far more appropriate workflow for that patient, and reduced waste. But for this to occur, the barriers that stop this from happening need to be challenged.
In my time with the NHS, I have identified these barriers that prevent all that you say from happening:
1. Structural and funding decisions are based on politics rather than value. The silo structure hampers innovation by providing departmental and budget barriers to end to end working.
2. In many cases financial cuts target the areas of the NHS that provide prevention and good value. Cuts have damaged the ability for the NHS to be effective and efficient in the first place. Therefore innovation has no hope to go forward unless this basic competence is recreated. Staff - people are at the heart of innovation, and NHS staff have been abused as employees, so that their engagement and participation is non-existent.
3. The value in the NHS is in the end to end workflows. Design these workflow to occur, rather than targeting silos.
4. The majority of the cost of the NHS lies in people with needs that extend further than simple medical issues. `innovative examples have shown that such working goes against the current way of working of the structure of the NHS.
5. The methods that leaders use to manage the NHS is driven by RAG reports, and short term cost management. Both of these stop any type of innovative end to end working.

Can these be changed? Yes
Is it difficult, because the change runs so deep? Yes.

But we have to do it, why are we waiting?

Lee Taylor

Consultant Orthopaedic Surgeon,
NHS (GMC2372318)
Comment date
09 April 2018

Having been a consultant for 30 years, I have witnessed an ever increasingly beaurocratic top down management structure that ignores not only patient opinion/engagement but also medical.
Hospital executives are so detached from day to day running of hospitals (despite FT’s having patient governors) they create a protective, unhealthy environment surrounded by medical managers who have no choice but to tow the party line ; suggestion or challenge is actively stamped out.
The executives and boards despite their narrative put money ahead of patients and they themselves remain without any true accountability.
In my opinion more money (although necessary) until there is significant and meaningful structural reform will be throwing good money after bad, as the waste is disgraceful.
It is very sad.

Julia Ross

Chief strategist care and health,
Comment date
08 April 2018

Interesting blog and I totally endorse the views expressed. However I do wonder if people’s proper and legitimate engagement in their own patient experience can sometimes obscure the bigger picture. The NHS operates or should operate within the wider community of local democracy and representation. It’s called local government. Surely both are part of an ideal wider system of accountability and change ?

Julie Ann Racino

Cornell and Syracuse Alumni
Comment date
07 April 2018

With American Society for Public Administration, Health and Human Services Administration Section, 2018

Gordon Cairns

Voluntary Secretary Blacon Health and Wellbeing Group,
Blacon Health and wellbeing Group
Comment date
06 April 2018

I fully endorse the views in this blog . I had Prostate Cancer in 2004 and had Radiotherapy 32 sessions and had no recurrence since . so a 13year survivor . About the rejigging of Services I volunteered for 3 years with NHS England specialised services as a Patient Rep on a National Clinical Reference Group on Specialised Urology Surgery and learned a really huge amount sitting with 15 of the top Urological Cancer surgeons in the Country . I only got train fares to meeting venues countrywide . Then NHSE changed the whole system and 27 Voluntary PPI in 8Cancer CRGs were kicked out and replaced by 3 paid PPI in one overarching Cancer CRG which I applied for and got a generic letter saying I didn't have enough experience for daily paid work . Then I went on NHS New Models of Care Interview Panels in London for Clinical Associates to help Vanguards where some PPI were paid Daily but I volunteered for just train fares getting the 06-26 train from Chester to Euston to get to venue for 09-00 and the 18-10 train back every night 8 days of that . The paid ones were travelling the day before and staying overnight in a Hotel paid for by NHS and getting £150 a day . .The NHS now call them NHS PPI Partners and I have applied lots of times but not got to interview stage ever not enough experience . I am now a service user Governor at CWP Foundation Trust . Secretary Voluntary for West Cheshire Mental Health Forum Member West Cheshire Mental Health Partnership Board . Community Director Avenue Services NW LTD An asset Management Company with 65 Employees and£2.5M turnover and not enough experience . More like not wanted because I am not posh talking and have a Diagnosis of Autism with depression and anxiety which I admit to on application forms . I am 71 with a pass in NHS Leadership Academy Edward Jenner Course and an ILM level 7 in strategic leadership and management still not experienced enough

Carol Coombes

Strengths based Leadership consultant,
Cracking Leadership
Comment date
06 April 2018

In an ideal world, we could facilitate everyone Becoming their Own Expert about our wellbeing, as a more sustainable approach, in partnership with the NHS. It would be great to use data as intelligently as we would if we were just setting the NHS up. Gathering Wellness data could not only fund itself and much more, but tell us more about how the body responds to attempts to strengthen itself. . Other improvements would be to answer the calls for people using kinder approaches (to cancer ) to have even basic assessments. (Please contact us to join our hackathon. Everyone welcome) and separate the process improvements from the policy decisions required. For e.g..I know of NO other organisation that sends an appointment out, just expecting people to make it. The cost of a phone call would be met easily by the reduction in DNAs. There are many many things that drive the NHS staff as mad as they do the patients. It would be good to see a real process for change, with benchmarks and measurements.

Ceinwen Giles

Director of Partnerships & Evaluation,
Shine Cancer Support
Comment date
04 April 2018

Totally agree Shahid - it's not good enough to only keep patients in voluntary roles which are poorly defined and unremunerated. I think Patient NEDs is a great start and Patient Directors across structures is also something useful to consider. Patient experience and involvement are too often lumped together and then also considered to be something other than the main business of caring for people.

Shahid Sardar

Comment date
04 April 2018

The challenge for the NHS is to ask, not just how will we do this, but how can we do it at scale so that we don't recreate a patchwork of improvement which works for some? How do we avoid the tokenism that bedevils much of the involvement currently operating, but now.. in a paid role?

I don't have all the answers either but we could begin by sanctioning that all NHS Boards appoint Patient Non Executive Directors within 2018-19; that experience as a patient is highly desirable and that all Board appointees are asked at interview (ideally by a current patient) what experience and reflections they have on using the NHS themselves.

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