A good year for patient leadership

What a good year for the roses
Many blooms still linger there

Elvis Costello

Covid decimated patient voice. Or so it seemed. The fragile architecture of patient and public engagement crumbled as centralised decision-making transformed delivery of health services. Many, including me, surmised that the cause had been put back by a decade. I was right… and wrong.

In Sussex, our co-production work did not merely survive, but has thrived. Why? 

We have an embedded engagement model – The Patient Leadership Triangle. It consists of a Patient Director, a pool of Patient and Carer Partners (PCPs) involved in improvement and governance and also a Patient and Carer Forum – a formal governance mechanism that oversees all ‘patient-centred’ work. 

Our musculoskeletal (MSK) service, like other community services, shifted quickly during Covid. Many staff were redeployed, and we ran a ‘skeleton’ service (pun acknowledged) for our patients. 

We also swiftly set up a ‘recovery programme’ that focused on how we might continue to run things operationally, but also improve what we offer. This included ramping up people’s ability to ‘self-refer’ to us, getting better at information we gather about patients to support shared decision making, improving our website and information provision and switching to being able to offer virtual appointments (by phone and video). 

The times they are a’messy.

Unlike many provider organisations, patients were included. As a Patient Director, working at executive level, I made sure Patient Partners were involved in the Recovery Programme groups. Patients were also involved in testing virtual systems and making sure they were accessible. 

It wasn’t perfect, of course. The times they are a’messy. And we sometimes had to struggle to ensure patient partners were not reduced to a feedback role and instead became part of decision-making and advisory groups.

But we were at the table, well-sighted on improvements and operational challenges. Patient partners forged new alliances with different leaders coming through the ranks. And I believe they helped, as well as challenged assumptions and shifted thoughts and functions. It seemed that staff and patients were working together.

As we emerged from the first lockdown period, patient partners also formed their own priorities for the future – resurrecting good patient feedback mechanisms, planning community engagement events to identify what matters to people with MSK conditions after Covid, and a more systematic approach to Diversity and Inclusion. 

As a Patient Director, I have been able to connect these three programmes with our two corporate priorities – First-Contact Practitioner (FCP) work and better metrics (PROMs and PREMs – outcome and experience measurement). 

I fear that where engagement has not been embedded like this, it will take longer to re-build the foundations. 

 ‘How do we do patient and public engagement differently?’

Meanwhile, something else has happened, beyond my MSK role – people have been getting in touch with me. Some have read the book (The Patient Revolution), some have heard about the MSK work. Others have attended my Patient Leadership Training Programmes. 

They have been united in their question: ‘How do we do patient and public engagement differently?’.

They have witnessed Covid decimating the engagement industry and see crisis as opportunity. They don’t want to build the same old structures – based on patient feedback and representation – those endeavours have well and truly failed. The NHS needs fresh ideas, about service delivery, improvement or co-production. Despite central inertia, at local level, good leaders spot the potential for Patient Leadership.

Now, as Director of InHealth Associates, I am no longer Billy No-Mates. Far from it. Do contact me if you want to join the emerging network of like-minded advocates for a different way of doing things.

For example: 

  • We may soon be helping a mental health trust to embed a radically different approach to service user engagement, with lived experience practitioners leading the way. 
  • We are supporting a national statutory body to recruit and support a new ‘lived experience advisor’ panel. 
  • We are in discussions with a merged acute hospital as to how they can embed patient leadership in transformation and integration across different specialties. 
  • And yesterday, we agreed to work with a STP (Sustainability and Transformation Plan) to assess the system’s readiness to develop a pool of Patient Leaders in digital improvement. 

Across both my roles – as Patient Director of Sussex MSK (Central) and Director of InHealth Associates, it feels like we may emerge from Covid with some exemplars of good practice in the Patient Leadership field. These will be more than one-off projects, based on a more systematic understanding and acknowledgement of Patient Leaders – those who have been through stuff, who know stuff, who want to change stuff. We are also considering developing a network or community of practice for Patient Leadership – an idea that will not go away.

We bring jewels of wisdom and insight from the caves of suffering. Or, if you prefer, roses that bloom through troubled times. 

Good luck with it all.

Learn more and contact David at InHealth Associates