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Joining up ‘co-production’ and ‘patient leadership’ for a new relationship with people who use services

David McNally, Head of Experience of Care at NHS England, talks about a new, simple model to help health and care organisations embed co-production into their day-to-day work, and about working with patient leaders.

Co-production is for the whole NHS. It is how we should all be working – doing with and not for, or to, people – not just sometimes, but all the time. The recently published, ‘Co-production Model’ has been developed by patient leaders and others, supported by the Coalition for Collaborative Care. It is a simple guide to ensuring that the voices of people with lived experience are included in decision-making, from commissioning to co-design and co-delivery.

The job of the Patient Experience Team in NHS England is to support the NHS to improve people’s experience of care and we aim to do what we do through co-production. I am surprised how frequently we still find commissioners making decisions about improving people’s experience of care without involving people who use services.

There are aspects of the patient experience that are so important to patients and service users and carers that providers should aim to perform them consistently for every individual, every time. This is the definition of an Always Event. A fundamental principle of Always Events is that they are co-produced with patients and service users and staff. NHS England is working with the Institute for Healthcare Improvement (IHI) and Picker Institute Europe to spread the use of Always Events throughout the NHS.

People who use services are also co-producing checks on the quality of NHS services. NHS Quality Checkers is a programme which ensures that people with a learning disability and/or autism co-produce the right tools that measure the quality of both mainstream and specialist NHS services.

One idea that exemplifies co-production, in which there is increasing interest, is that of working with patient and carer leaders. The King’s Fund has recently published a report – ‘Patients as Partners’ – on their collaborative pairs programme. NHS and patient leaders in the South Region are running a ‘Leading Together’ programme – also an NHS Leadership Academy pilot. Both link patient leaders with a clinical or managerial leader to work together on a real local challenge.

The Centre for Patient Leadership described patient leaders as “patients, service users and carers who work with others to influence decision-making at a strategic level.” For National Voices, patient leadership “describes an aspiration that a portion of (these active) patients may come to be recognised as service leaders, equal in esteem and influence to managerial and clinical leaders.”

NHS England commissioned a project to understand how patients and carer leaders can make a real difference in improving experience of care. We undertook the project throughout on the basis of co-production with patient and carer leaders.

We found out that patients and carer leaders can make a real difference in the attention that experience of care gets alongside clinical effectiveness and safety, and that they can influence NHS organisations to act on patient and carer feedback. To make this approach work the NHS organisations need to; invest in patient leaders; put robust feedback mechanisms in place, and; develop a culture to act on feedback.

Now is a good time to join up our thinking about co-production and patient leadership. If co-production is how we should do everything, then patient leadership enables us to have co-produced system leadership to support continued improvement in experience and clinical quality based on what matters most to people.

The King’s Fund is calling on every NHS organisation to commit to working with patients as partners. We could start with senior leaders in national NHS bodies modelling co-production with patient leaders in an open and transparent way, and then spreading this way of working throughout their organisations.

You can read more on the ‘Co-production Model’ in this feature on the Coalition for Collaborative Care website.

David McNally

David McNally has been Head of Experience of Care with NHS England’s Patient Experience Team since 2013 and is a member of the Co-production Model Steering Group. He worked previously in an SHA, a PCT, Adult Social Care and the voluntary sector.

Last year he led a project to find out what impact patient leaders can have on improving experience of care and has been invited by the French National Authority for Health to talk about the project at a seminar in Paris in November with along with Steve Sharples who is a Patient Leader.

In April David co-designed and co-led a round table on Patient Leadership with patient leaders, the King’s Fund and the Leadership Academy and next year will be running a session on ‘Patients as partners in the business of improving experience’ at The Beryl Institute Patient Experience Conference in Denver with Mark Doughty from The King’s Fund.

He is a member of the Researcher-Led Panel, National Institute for Health Research, Health Services and Delivery Research programme and an Honorary Senior Lecturer at the University of Manchester, Medical School.