Patient Directors –The Next Step in The Patient Revolution

I’m just off the phone to a chief exec of a large healthcare provider. She wants to recruit a Patient Director. I recently spoke with the Director of a major patient organisation. She wants to see Patient Directors in all healthcare organisations. I also just got a message from a voluntary sector leader who wants to see them in that sector too.

What do they have in common? Well, they all get it. They all see the next step for the Patient Revolution cannot happen unless people who have had life-changing illness, injury or disability are in true positions of power and are equal decision-makers alongside clinical and managerial directors.

They don’t have much truck with people who, based on erroneous assumptions about what Patient Directors could be, argue that the role is (a) unnecessary (b) unfeasible (c) tokenistic.

They see that the role comes as part of a systemic model of embedded engagement – see The Patient Leadership Triangle – one where people who have been through stuff, who want to change stuff also have a range of meaningful opportunities and serious investment in capacity building to influence change. This includes being able to be peer support workers, improvement advisers and governance partners, as well as Directors.

What else do those three interested and committed folk have in common? They work in other countries: New Zealand, Canada and Ireland.

I find it deeply disappointing (that’s NHS-speak for pissed off) that efforts to install Patient Directors in this country seem to have faltered. This is not just due to the fragility of engagement structures during Covid. Two Patient Director roles created a couple of years ago, have been abandoned. National agencies and most national Patient Organisations have not yet embraced the concept of Patient Leadership, let alone advocated for Patient Directors. You’ll need to ask why because I simply don’t know, despite asking.

What does a Patient Director do? This is an executive and salaried position, at the same level as the Clinical and Managerial Directors, helping to oversee the daily delivery of services and plan for the future. My role at The Sussex MSK Partnership (Central) includes:

• helping embed our organisation’s systems, processes and culture to focus on what matters;
• brokering opportunities for dialogue between patients/carers and staff in decision-making (whether that be in operational, improvement or governance conversations);
• overseeing a coordinated approach to wider engagement and patient experience work (plus now a lead role in our health equities work);
• modelling collaborative leadership principles at leadership level, and to support our amazing Patient Partners (paid, supported and trained to be improvement partners);
• working closely with our Personalisation Lead, Chloe Stewart and her Personalised Care Team, Georgi Daluiso and Helen Patten on issues such as shared decision making.

This work has led to patients and patient partners having an impact on policy and practice, for example, prioritising our health equities plans, co-researching the impact of remote consultations during Covid, peer-led research on shared decision making, transforming admin systems, inputting into the design of pain management programmes, as well as the ongoing participation in training, and recruitment panels. The CQC rated our service as outstanding, partly due to the acknowledged contribution of our Patient Partners.

More than that, the relationships between staff and patient partners has led to more and more calls upon their time, and mine! Patient partners are developing their own corporate priorities now embedded in our work; and to patients facilitating staff wellbeing events during Covid – not least because staff have found their authenticity and leadership qualities of vulnerability inspiring, transgressive and personally liberating. Staff have more in common than they used to think with patients – and Covid in some ways helped that. A deeper bond based on our common humanity is being played out behind the scenes locally.

At a day to day level, Patient Partners are part of our clinical and operational teams helping to restore the service, for example on working groups looking at how to balance bringing back necessary face to face appointments with continuing to build on the benefit of virtual consultations; supporting the implementation of online booking systems, and gathering patient experience data post-Covid. Working together – clinical staff, admin staff and patients is becoming the norm.

Meanwhile, nationally, I haven’t given up on this country yet. As this article is being written, so I wait with bated breath for new NICE Guidance on Shared Decision Making. The draft that went out to consultation foregrounded the need for a Patient Director in all healthcare providers so as to help coordinate personalisation and SDM.

I am also working with one ICS, exploring how the Leadership Triangle model might be adapted there to create a ‘Patient Director for Digital Services’ and a team of ‘Patient Advisors on Digital Services’. And I am in touch with several Trusts who are intrigued by the model.

But I’m really not sure that people here are as ready for true innovation as they are for creating new organisational structures, logos and  acronyms. Once upon a time Simon Stevens argued for our talent to be recognised and valued, though he did use the word ‘harnessed’ which sounds a bit like we are horses. Now maybe he sees us as belonging in the knacker’s yard.

We are certainly knackered in other ways.

My book The Patient Revolution includes a chapter on the late great Michael Seres who couldn’t get his entrepreneurial ideas into the NHS and moved successfully to the States to do so. I’m wondering whether to do likewise. I hear Australia, Ireland and New Zealand are nice.

Find out more about Patient Leadership and the role of Patient Directors by coming to one of our regular series of training programmes.