Patient leaders should have been Francis' first recommendation

In the post-Francis report era, the need to work with patients and carers on safety and quality issues is more urgent than ever. Rhetoric around patient centred care is in abundance.

The 14 national bodies which signed the government’s response to the report said: “We will put patients first, not the interests of our organisations or the system.” NHS England’s “key aim”, meanwhile, is “securing the best possible health outcomes for patients by prioritising them in every decision it makes”.

‘Where organisations do “consult” on the future they rely on one-off consultations and often avoid the difficult, honest conversations’

There remains no real sense, however, of quite how this need to fully involve patients could, should or will be met. Robert Francis advocates the introduction of more feedback mechanisms, and urges professionals and institutions to listen better and act accordingly.

The problem with that approach is that the fundamental engagement model remains paternalistic and is unlikely to deliver the changes required. “Insight” from patients is still rooted in the gathering of data rather than conversations. It is also usually about past rather than current experiences.

Moreover, little focus is placed on what happens to the data collected, how it should feed in to decision making, and how it should drive change. Reports tend to sit on the shelf. Where organisations do “consult” on the future they rely on representational structures or one-off consultations and often avoid the difficult, honest conversations needed to transform services. These engagement channels are inadequate, restricting the potential intelligence available and closing down people’s ability to help.

Ultimate power

The real problem, though, is that the ultimate decision making power in healthcare still lies with professional leaders acting for, rather than with, patients. Calls for patient centred leadership, or of giving more decision making power to clinicians, are still based on this status quo.

‘Many patients help train health professionals, peer to peer mentoring is on the rise and social media fosters the trend for patients to support each other’

The key to real change is instead ensuring that patients, service users, carers and the public are at the heart of decision making. Patient leaders − individuals with the confidence and capability to work with clinical and managerial leaders to influence change − must be encouraged and developed. This approach is founded on seeing people who live with health problems and use services as an asset.

Dominic Makuvachuma-Walker, who has used mental health services and works as engagement manager at mental health charity Mind, says patient leadership can be a challenging shift. “In co-production, different stakeholders come together, with both purportedly leading,” he says. “But people who use services are powerless and professionals have control over decisions. Patient leadership redresses that imbalance. The system will not budge and it will not give you power. Before you get to being equal, you have to tip the balance.”

That process is starting, albeit slowly. Many patients help train health professionals, peer to peer mentoring is on the rise and social media fosters the trend for patients to support each other or converse with professionals. There are dozens of community based programmes where community leaders, health champions or researchers contribute to wellbeing and better quality of life.

Patients can also create their own opportunities to improve health and healthcare. The Centre for Patient Leadership worked with the NHS Institute for Innovation and Improvement to support renal patient leaders in promoting shared decision making. They are working with professionals and becoming a repository of patient wisdom to promote shared decision making.

Learning and development required

That said, widening opportunities for patient leadership is not enough. To play an effective role, patient leaders need to be offered learning and development.

‘As well as helping to develop patient leaders, organisations will need to foster a culture and systems within which their contributions can flourish’

Again, this is already happening in some places. Last year, NHS Midlands and East commissioned work to train 160 patient leaders across the region as part of its Patient Revolution programme.

The learning programme focused on developing interpersonal skills so that they could contribute to patient experience work. Sir Neil McKay, then chief executive of NHS Midlands and East, says the benefits have been tangible: “Changes in the way we make decisions and changes to what we as professionals thought we should be doing… this is leading to real changes on the ground. Patient leadership seems to be the ‘missing link’ in engagement work.”

Trevor Fernandes, who became a British Heart Foundation ambassador after he suffered a heart attack and who worked on the Keogh review, reports the ability to meaningfully discuss issues with healthcare professionals is invaluable: “The skills of effective listening and questioning have enabled me to challenge institutionalised thinking and encourage health professionals to truly hear what patients and the public were saying.”

As well as helping to develop patient leaders, organisations will need to foster a culture and systems within which their contributions can flourish. This will involve work on both the strategic and operational sides, as discussed in the Centre for Patient Leadership’s Bring It On guide.

Transformational leaders

Many organisations are now interested in making this sort of progress. East and North Hertfordshire Clinical Commissioning Group has run a programme for its locality reference group members, while the National Institute for Health and Research Collaboration for Leadership in Applied Health Research and Care for north west London ran four programmes to support patient and community representatives in its improvement work.

‘It is encouraging to see patient leadership being discussed more widely. It is concerning that some of these discussions take place without patient leaders’

North Durham CCG is considering developing a local cadre of patient leaders to ensure that services are co-commissioned, co-designed, co-delivered and co-assessed in line with the engagement cycle. NHS England seems keen on identifying ways in which it can support patient leadership. 

It is exciting and encouraging to see patient leadership being discussed more widely. It is concerning, however, that some of these discussions take place without patient leaders in the room, and without an agreed understanding of what patient leadership means. The risk is that the concept itself will be co-opted and distorted; potentially reflecting and perpetuating the very culture that patient leadership seeks to address.

True patient leadership could be transformational: a climate of collaboration; joint work towards solutions; innovative ways of dealing with challenges; patient engagement in tough decisions on planning and policy; continuous improvement in the quality of patient care and experience.

It could mean problems are nipped in the bud, with no more terrible tales of poor care and subsequent scandals. Ultimately, it could deliver the patient centred care we are all looking for. It should have been among the foremost of Francis’ recommendations.