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From Job-Job to Rock n’Roll-Role – The Sussex Model of Patient Partnership

by David Gilbert

November 23, 2019

We have nine paid and supported Patient and Carer Partners (PCP) at Sussex MSK Partnership (Central). This, in addition to bespoke engagement work and gathering and learning from patient experience data.

Yesterday, I spoke to one of the nine: “I was in the waiting room – was I a patient or a patient-partner? I was now thinking about improvements that can be made. I then went with a friend to another hospital where we seemed powerless and told him about the patient and carer partner role… he was fascinated”.

I suggested she write a blog and that this is used to discuss the role at our next meeting. We also talked about her re-using her extraordinary research brain to look into availability of acupuncture in the NHS and locally – partly as a way of developing relationships with our clinicians and partly as a way of gaining system knowledge and thinking through local and national practice.

I suggested to another PCP that she becomes a mentor for a health professional. “That’s turning the tables, isn’t it?” she said. She has been taking part in observations of clinics and assessing the quality of shared decision making, alongside other PCPs and peer-clinician observers.

The project has been so successful, we will probably roll it out into other clinics, and maybe revise the assessment process and measurement tool so as to be more patient-centred. The other day, the lead clinician for the upper limb team, the extraordinary Helen Patten, agreed to patient-centred observations being on a level-playing field to peer-observation for appraisal purposes.

As a result of this project, this particular PCP has struck up a close relationship with the clinician she observed who had found the patient-centred observation uniquely valuable. “Patients as mentors of clinicians as the next step....?” she paused: “Why not?”

Another PCP has been invited by a clinical lead to participate in work on staff inclusion, beginning by looking at experiences of BAME professionals. I am going to ask this PCP whether that experience can be widened to look at patient inclusion. This will expand on last year’s work on accessibility and information provision.

Meanwhile, another PCP is going to help us analyse qualitative data from our patient survey and join a project on improving our appointment letters.

Another more experienced PCP is closely involved in the roll-out of local plans for advanced practitioners to be ‘First Contact Practitioners’ in GP practices. This has taken her deep into plans around work-force and quality assurance. These are issues she is actually more qualified than most to take part in, given her professional background, as well as her personal experiences of care.

Thus, PCPs are beginning to develop their own portfolio of work. This portfolio builds on their ‘frozen assets’ (expertise from a former life before illness) plus the ‘jewels of wisdom’ from the caves of suffering (expertise from patient-hood, including leading with vulnerability, awareness of power and trusts issues, primacy of healing relationships). These are things we discuss in the book ‘The Patient Revolution’.

The PCPs are also developing a set of collective priorities. These are likely to include a closer focus on pain services and physio and a patient-led project on ‘coordination and consistency’ across pathways.

Once these individual and collective priorities are decided upon in early 2020, we will co-design a learning and support programme that focuses on ‘core skills’ (e.g. bridging personal experience for strategic gain; communication and relational skills) and ‘context-specific’ skills (e.g. how to move from being an ‘improvement partner’ to ‘governance committee role’).

The vision is for PCPs to develop a ‘career-pathway’ – from judicious use of own experience narratives (i.e. in learning and education) through being ‘improvement partner’ through to ‘governance advisor’. NB. We now have PCPs on two MDTs (upper-limb and lower-limb) and will expand that to four MDTs (pain, physio) in 2020.

Of course, this ‘pathway’ can go the reverse-route, and encompass other roles, such as on recruitment panels, undertaking research, being a mentor or moving into peer-support. 

The benefits of our work are becoming visible – our recent CQC ‘outstanding’ report included specific praise for our model of Patient Partnership. More importantly, we have seen changes in policy and practice, improved self-management programmes, changes to shared decision making approaches, improved access to clinics, better user experiences in waiting rooms, etc etc.

But the most satisfying thing for me is, I do not need to sell the work. Staff are coming to us. That shows how far we have come.

Last week, one of our PCPs hosted a celebration event for the CQC ‘outstanding’ assessment. Next week, two of them will meet with Simon Stevens in order to demonstrate that social enterprises should stay included on procurement frameworks.

But aside from the posh stuff, three PCPs will be expert panellists at a phsyio learning day – the keynote morning presentation in front of about 100 local practitioners and admin staff.

As one of our newer recruits to the role of PCP said: “I am not used to being encouraged to delve into my experiences of having a long-term condition in a positive way and people wanting me bring that to the table. I am slowly coming to terms with the fact this is not a job-job, in the sense that I have X hours a week to do Y. That we can influence things and find ways to match our passions with the needs of the organisation. And vice-versa.”

It’s not a job-job. It’s a ‘rock and roll-role’.

© 2019 David Gilbert

If you liked this blog, you can find others at

The Patient Revolution – how we can heal healthcare’ is published by Jessica Kingsley Publishers.




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