How patient partners are changing healthcare | David Gilbert

David Gilbert

Seeing patients as partners, collaborative leaders, critical friends and insightful supporters, is key to turning healthcare on its head, writes David Gilbert.


The Sussex MSK Partnership is the first organisation in the world to appoint a patient director.

My role, covering Brighton and Hove, Mid Sussex and Horsham and Crawley, is an executive-level post to help us focus on what matters to the people we serve, and hardwire patient partnerships into improvement and governance work. This includes using data for improvement and effective patient and public engagement. 

The latter includes working with eight patient and carer partners (PCPs). They are not representatives, but collaborative leaders, critical friends and insightful supporters who draw on their wisdom – born of living with pain and suffering, loss of identity, loneliness and vulnerability, resilience and passion alongside their experiences of healthcare and of life and their vision of patient-centred care. 

Their experience is equal to, and different from, system insiders. 

They have been working mostly on improvement projects. For example, on improving administrative processes, co-designing services for people in pain and for people with fibromyalgia. PCPs have been involved in corporate work on values, quality summits as we prepare for Care Quality Commission inspections and staff away days. 

Each of our six ‘CQUIN’ projects over the last two years has been co-designed and co-delivered with PCPs, including work on shared decision-making, pain redesign, developing patient-centred outcomes, integration of physical and mental health services, supporting admin staff, self-referral in physiotherapy. 

They don’t just ‘tell their stories’, but also stay in the room for difficult conversations. This takes courage on both ‘sides’ to be open, for staff to ‘hang out their dirty linen in public – and deep trust. Jane Watts, one of the partners, states: “Honesty goes a long way in establishing the trust, and dialogue, so patients help clinicians to help them.”

Partners view care from different angles. One changed our appointment process by challenging how we fixed (inconvenient) appointments that led to floods of cancellations. 

“You really want to put us in control? Let us call you to make an appointment that suits our life.” So, we did. Our admin staff like it. And it will save us an estimated 3,400 cancellations when we roll out the new process.

Things are changing

The PCP group is getting to know each other better. And people’s gifts and talents rise to the surface. One sees her ‘frozen assets’ thawing. She wants to do more in her special field of training and education and is leading work on how we capture learning and raise awareness of partners’ skills. 

Another, with corporate PA background, has written a welcome pack for new partners. Insights from the caves of suffering is being combined with professional talent and life skills – the person within the patient emerges.

Some have wanted to move on. This work may suit them for a while. Or they may get ill again. This work can be tough on many levels. Our passion and idealism can lead to great things, but we are human and frail. It can be flattering to be valued again. But we need to value ourselves too – rest, rest, rest. 

Yes, we need to recruit others. But we only know about the role because we have spent time getting there. The group has grown even more feisty! No longer will they accept being slotted into institutionally defined opportunities. They want to embark on their own projects and work collectively. We might launch a piece of work on coordinated care. One exciting possibility is that partners could become mentors and catalysts for systems thinking and collaborative leadership. The group is changing its spots. 

Then, instead of getting professionals to come up with things that PCPs can do, it’s becoming the other way round – bringing innovative ideas into the organisation. I need to get out of the way as better relationships between people flourish. 

The patient director journey

Our journey as a PCP gang mirrors my own as patient director. This was the first role of its kind, and I have struggled (two breakdowns after not having been ill for 18 years). 

Within a frenzied NHS culture, holding the space and time for this work is the most important, but most challenging part of my job. 

My advice to others is not to start by defaulting to procedures – skills audits, database development, recruitment processes, policy documents. I am reminded of a friend who, when asked for his preferred ‘leadership model’, replied: “I get a gang together, we decide what to do, then do it.” 

And what of the benefits? Some partners report improvements in their own health and confidence – personal and professional. 

Staff value the impact of partners, and practices and policies (slowly) change – new appointment letters, new questions on surveys, more widespread patient outcome measures, shifts in models for pain services and education programmes, patients on recruitment panels, more honest conversations about change, etc. 

One clinician said: “Recommending a patient to be partner is the best treatment I’ve ever given.” 

David Gilbert is patient director at Sussex MSK Partnership (Central) and director of InHealth Associates
This post is a short version of an article posted on David’s Future Patient blog. Head to the website to see the full post.

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