Patient leaders have experience of life changing illness, injury or disability and can influence change through working in partnership. They must be involved in the leadership task itself, says Alison Cameron and colleagues

As part of a growing community of patient leaders, we gave evidence to the Future of NHS Leadership inquiry into “what types of leadership does the NHS need to prosper now and into the future?”

‘Patients clearly need to be much more intimately involved in the design of current and future services’

Despite discussing patient leadership in depth and putting forward practical suggestions, the report stated only that: “Patients clearly need to be much more intimately involved in the design of current and future services. But we have rejected the suggestion that a ‘chief patient officer’ or equivalent should be appointed to the board of every NHS organisation.

“That feels to us tokenistic, and begs the question of which sort of patient. Ticking a box that says ‘we have a patient representative’ will not bring about the close involvement of patients at all levels in service design that is needed.”

It seemed we had not been listened to. We needed to respond.

Work of the patient leaders

Patient leaders have experience of life changing illness, injury or disability and can influence change through working in partnership. Our specific roles vary, but our work is rooted in a mindset of collaboration and dialogue.

We agree that more is needed than ticking boxes – the traditional forms of engagement predicated on “feedback” (countless questionnaires and focus groups with little impact) or “scrutiny” (“representatives” without clarity of role or support, slotted into institutionally defined opportunities).

However, we need to be true partners in the leadership task itself, and equals in difficult conversations and decisions.

‘Patient leaders have experience of life changing illness, injury or disability and can influence change’

The NHS Five Year Forward View declares that the NHS must “engage with communities and citizens in new ways”; the Berwick report called for engagement from “ward to board” and the King’s Fund states “organisations such as the Centre for Patient Leadership stress the importance of seeing patient leaders as a resource for change”.

In the US, Stanford Medicine X programme has the hashtag #everyoneincluded putting patients on an equal footing in the co design, planning and delivery of the programme including at board level. President Barack Obama recently held a meeting at the White House for leaders of change in healthcare and within the list, but in equal proportion, were patients.

In the UK, the report’s dismissal of a “chief patient officer” has been superseded by those with clearer vision. The King’s Fund now has two patient leaders as associates, the British Medical Journal has a patient editor and Sussex MSK Partnership has appointed a patient director (David Gilbert was named one of HSJ’s Patient Leaders for 2015) with real influence and strategic oversight.

On the agenda

Only when patients have this sort of influence, can a wider vision for healthcare be realised where patients will:

  • be in control of their health – not “put” at the centre of our healthcare – but help lead it;
  • be in charge of their own information and be full partners in shared decision making;
  • change the face of healthcare through technology and social media – driving changes in healthcare policy and practice;
  • support better health and well being in the community as well as improvements in the system, alongside other citizens and community champions;
  • be full partners in planning, designing and undertaking research – from informing priorities to working with researchers to translate the findings into practice;
  • reshape clinical and non-clinical education by co-designing and delivering local and national training and learning;
  • work in equal partnership with health professionals and policy makers at every level as joint decision makers on health policy, regulation and practice;
  • work together to become joint commissioners of health and healthcare services;
  • be entrepreneurs and innovators – supported and supporting one another to invent and apply new technologies to our everyday lives; and
  • co-deliver services, moving from advocacy and peer to peer support, to being full partners in the healthcare delivery team. Patient led organisations and teams will become the norm.

True value

Ultimately, this is about valuing people. The forward view states: “We have not fully harnessed the renewable energy represented by patients and communities.”

Our energy is a finite resource. To continue to use patients merely as feedback data and box tickers is to waste a precious resource.

We need new opportunities for patients and carers – leadership must be opened up to a wider range of actors. And significant investment in support and training for patient leaders is needed to level the playing field with the vast amounts spent on training of clinical and managerial leaders.

‘We need new opportunities for patients and carers’

As one HSJ respondent wrote: “[Naylor’s] recommendations chip at the edges of the issues. Continued deference to hierarchy, position and title will result in the presentation of solutions premised on the same factors. If the NHS is to deliver its purpose then the solutions will not be discovered by those responsible for creating the past.”

The final word goes to Machiavelli. Five hundred years ago he wrote: “There is nothing more difficult to take in hand, more perilous to conduct, or more uncertain in its success, than to take the lead in the introduction of a new order of things. Because the innovator has for enemies all those who have done well under the old conditions, and lukewarm defenders in those who may do well under the new.”

Alison Cameron is a mental health service user, chair of the Patient Safety Champion Network at Imperial College Health Partners, associate of the King’s Fund and transformation fellow at NHS Improving Quality; David Gilbert is a former mental health service user, patient director of Sussex MSK Partnership (Central) and director of InHealth Associates; and Michael Seres is a bowel transplant and cancer patient, founder of connected device company 11Health and member of NHS England’s user council on digital health