Viewpoint: More resources needed to involve patients in health service design

Speaking last week at the launch of the King's Fund's third Annual NHS Leadership and Management Summit, I had the chance to talk about its report on Patient-Centred Leadership: Rediscovering Our Purpose, writes Ailsa Bosworth, chief executive of the National Rheumatoid Arthritis Society.

Ms Bosworth: 'If we want truly great patient leadership we need to go even further still.'
Ms Bosworth: 'If we want truly great patient leadership we need to go even further still.'

Of the many important messages arising from the report, the one I chose to concentrate on was the notion that ‘NHS leaders should encourage and nurture patient leaders to help build collaborative relationships and develop genuine co-production as a way of improving services’.


I made the point that under the new reforms everybody wants patients to be involved in everything related to the NHS. This is of course to be welcomed, but I believe it will require a concerted effort to move beyond the rhetoric and tokenistic involvement of patients to invest in tools, strategies and education that will actually make meaningful patient leadership in service design, ensuring safe practices and improved quality of healthcare, a reality.


Fundamental paradox


Whether we like it or not there is a fundamental paradox at the centre of the health reforms. On the one hand we have NHS leaders now clamouring to hear from the patient voice, while on the other hand we have the difficult realisation that many patients struggle to understand the reforms and often do not have the requisite knowledge of the system and associated skills to ensure they are properly heard during discussions about service design.


In this context, it occurs to me that mentoring needs to be instilled to a much greater extent in the new NHS and amongst its leaders. Mentoring of potential patient leaders by experienced patients in leadership roles should also be considered.


Nothing in the Francis report encourages patients to be leaders and nowhere in the otherwise excellent King’s Fund report are there ideas about how to find, screen and train ‘this cadre of patient leaders to support quality improvement in healthcare’. There is evidently a need for a more strategic patient voice at the centre.


Cadre of patient leaders


The reality is that it is charities that frequently have to fill the void when it comes to developing this ‘cadre of patient leaders’ and this comes at a financial cost to us. We don’t want to shirk our responsibilities to patients, but I believe we deserve a little more help. The less support offered from the centre, the greater the impression of an adversarial ‘them and us’ leadership culture between patients and the NHS.


Of course there are solutions, such as the Centre for Patient Leadership, which is quite rightly getting a lot of interest in its work and concepts, but as admirable as this is I don’t think it is enough. The new NHS Leadership Academy has set up a number of programmes focused on delivering greater leadership across the health sector, which is extremely important, yet at the moment there is no dedicated patient leader training programme. I do hope this will change.


If we want truly great patient leadership we need to go even further still. On a practical level the government ought to work up an easy to understand patient involvement map, setting out the main avenues for prospective patient leaders to get involved in the major health bodies; it could also provide a definitive menu of ‘options’ for patient involvement with the expected levels of time commitment and desired levels of expertise required to encourage patient leaders to come forward.


Furthermore, instead of the leaving it purely to local Healthwatch, CCGs and the other health bodies to haphazardly recruit patients the government should devise a dedicated online recruitment gateway and place useful signposting information on the new GOV.UK website (the Cabinet Office’s public appointments gateway doesn’t go far enough). All of this would help to formalise patient leadership recruitment and make the whole process more transparent.


Prestige factor


Dare I say it – there is also the prestige factor that needs to be addressed. How much prestige is currently attached to patient leaders of local health services? Not much. If we want to encourage patient leaders to come forward, we are also going to have to address this image gap. An awareness campaign would be helpful.


We frequently talk about patient-centred leadership from the clinical and managerial perspective. This is crucially important, but I do also feel that there is a missing piece of the jigsaw. That piece of the jigsaw relates to NHS’s ability to empower patients themselves to be leaders in service design – this is distinct from the focus on changing the personal patient and clinician relationship, but is equally important if we want to create a genuinely new type of patient-centred leadership in the NHS

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