What about the patient?: David Gilbert

What have you done?

Our partnership takes all GP referrals for MSK services in three clinical commissioning group areas, and provides an integrated service, with an emphasis on community-based interventions.

As patient director, my role is to focus us on what matters to patients and bring together things that are traditionally done in silos – patient engagement, complaints, patient experience and so on.  And I broker opportunities for people to be involved in an effective way.

Our Patient and Carer Forum brings together patients and staff and sits alongside other governance committees like finance and performance and clinical quality. It has become a key opportunity for the whole partnership to come together to think.    

We have also trained and supported a core group of Patient and Carer Partners. They are paid the NHS honoraria of up to £150 a day to be involved in improvement and staff training and to be members of the Patient and Carer Forum. They are ‘critical friends’ who draw on their experience of our services to check assumptions, ask questions, identify problems and provide insights.  

PCPs have been involved in several major improvement programmes, for example redesigning pathways and integrating physical and mental health provision. They have led workshops during staff conferences and co-designed training for call handlers on difficult conversations.

I see the patient director role, the Forum and the PCPs as three points of a triangle that make up our “Sussex Model” of Patient and Carer Partnership. It is backed up by systems and processes to ensure the work becomes part of everyday practice.  

What was your motivation?

I have been critical of traditional, tick-box approaches to engagement and wanted to go beyond them. I had previously worked with Mark Doughty to develop the field of patient leadership and I wanted to put those leadership principles into practice. I wanted patients to be influential and valued partners in improvement and governance.  

How were patients and families involved?

The key is to involve people as partners and equals. At first, there was a tendency to want people to tell a story or offer feedback and then leave. Part of my role was to challenge that and insist that PCPs stayed in the room and in the conversation.

What was the impact?

The partnership as a whole has transformed MSK services with, for example, reductions in waiting times and unnecessary surgery. We have had to continue a service for a population of 750,000 people at the same time as improving it. It’s been like changing an airplane engine in mid-flight!

It’s not easy to separate out the impact of the explicitly ‘patient-centred’ work from the wider service, but I think it has helped to change the culture. For example, it has created a safer environment to challenge practice and question assumptions. 

An early example was how we redesigned the appointment system. Lots of people were calling to cancel or change inconvenient appointments that we had booked for them. A patient partner suggested that, instead, we send opt-in appointment letters and ask patients to phone in with their own preferred appointment times. We tried it out and it was a success.

There have been many other things that sound little but which matter to patients: for example, better chairs in the waiting rooms; improved signage, appointment letters that try to prepare people better for their consultations, post-consultation letters (clinic outcome letters) which are addressed to the patient and copied to the GP. 

Slowly, PCPs have become trusted equals. They help reframe issues, change the dynamics and model collaborative leadership. A turning point was when they started to identify their own priorities, such as access and inclusion, rather than wait to be allocated to projects. 

What have you learned?

The role of patient director is still novel. It has taken a long time to do the groundwork, build relationships and make the case for a different model of engagement. 

You have to go where the energy is and be opportunistic. The emotional labour is underestimated, and it can be lonely. You need support.

Simple is not easy. An example was “Chairgate”. People were telling us that the seating in our waiting rooms was uncomfortable and unsuitable. Though it was nobody’s fault, it took months to sort out who was responsible, where decisions could be taken and who would pay. Eventually, through schmoozing and good relationships we got the chairs!

What next?

We are experimenting with PCPs on our multidisciplinary teams to improve the level of reflection and dialogue on issues of quality. We are revamping our website, to reflect a more coherent self-management offer. 

What is your message to HSJ readers?

Patients can help!

I think every NHS provider would benefit from a patient director and a bank of patient and carer partners. The starting point should be improvement – not “we need a patient on a committee”.

The partner role is pivotal. They are advisors not ‘reps’ or feedback fodder. They are not there to tell stories and give people a compassion rush. They are people anchored in what matters, who challenge assumptions and ask: “So what? How does this affect patients?” and provide advice and support – true partners, just like a clinical adviser.  

They should be recruited properly, paid, trained and supported to be involved in improvement and governance. They need to stay in the room.

This isn’t just about benefits to patients. We have found that our approach helps to re-connect staff to why they came into the service – it re-humanises healthcare. It really pleases me that staff are able to come forward with ideas for improvement that we try and work through together to implement.   

I explore a lot of these issues in my blog and in my forthcoming book The Patient Revolution: How We Can Heal the Healthcare System. Now available for pre-order and published by Jessica Kingsley Publishers on 19 September.

The past What about the patient?

Annie Laverty