As I left home at 5.00am this morning, I thought of my courageous friend Ally and ‘that’ blog. How she has called out the ‘shiny' improvement movement. And how tired many Patient Leader friends are of the work. And I thought of the personal price I have paid over the last three years – three scary mental health relapses.
And of the work that has gone into getting this far with my amazing colleagues at the Sussex MSK Partnership – how the Partnership has delivered, improved and changed how services are delivered, at a time of huge pressures in the NHS.
And how we have sweated together to undertake a different approach to being ‘patient-centred’ and holding close a model of ‘patients and carers being true partners’ in improvement work.
Patients as Part of The Team
When we formed our pool of Patient Partners – eight fab people, valued, paid and supported to be part of improvement work – I always wanted us to move into the heart of decision making. I wanted them to be at every MDT, the regular meetings of practitioners overseeing quality in each of our musculoskeletal pathways (orthopaedic and rheumatological, pain management and physio).
That was two years ago. First we battled hard to get their places as more than story-tellers and feedback fodder in redesign work – the partners proving themselves well able to reframe problems, generate new solutions and model collaborative leadership and shift dynamics. They have become trusted equals in any improvement processes. It has not been easy and is dependent on time, money, space, trust… all the things the NHS has precious little of.
And when I realised we could not ‘supply’ two patient partners in each of our eight MDTs (not enough budget, not enough capacity, not enough time on agendas), we switched paths. In recent months we have been talking to Kieran Barnard, our lead for the ‘hip and knee’ pathway. And three of the patient partners have planned a pilot for how patient partners might be involved. The idea being to hold a ‘special MDT’ to focus on issues of quality and patient experience. And for us to see how this went and whether it could be a model for other pathways.
Meanwhile, over on the data side of things
At the same time, we have been gathering a shed load of patient experience data, but my tiny team (basically two of us, me and the special Anna Roberts) have been bogged down in ‘feeding the beast’ – gathering data, analysing hundreds of qualitative comments and corporate reporting. We have not been able to move into the space where we could feed the data to the right level and work with teams to use the data for improvement.
So, I have been aware that the last two years have been about, on the one hand building the foundations for the patient experience data machine so as to generate useful data, find capacity for analysing it, and mechanisms to better report (as well as making sure we could find out what is done with it) and on the other building the case for, and capacity of, patient partners.
Shall I say it again? It’s been hard. And all the while, my colleagues have been working equally hard, more so, to deliver the service and also introduce more patient-centred practices, alongside our amazing colleague, Chloe Stewart, who has supported them to undertake shared decision making and signposting to supported self-management.
It's been a long journey
So, today, I woke up at 5, drove around the M25 to a small meeting room at The Vale Surgery where the Hip and Knee Pathway Team met at 8.00am. And I met Jenny, one of our Patient Partners outside to discuss our half hour slot. This was to set out how we were collecting data and discuss staff issues and concerns around people’s experiences of services – and primarily to get agreement in principle for a pilot ‘special MDT’.
And, as with all plans, as with all work in the NHS, as with life, the minutes ticked away as other agenda items ate in to ‘our’ time with Kieran doing his best to cover what needed to be covered, all the while glancing nervously at me and Jenny!
With 15 minutes till the end, we got our go. And we made our case and listened to what came back. It was beyond our wildest dreams.
Many of the practitioners stayed behind to discuss how patients and staff could collaborate. They wanted more – they wanted to hear about experiences, they wanted to talk about patient and staff assumptions, they wanted to explore difficult issues, they wanted patients as part of the team, they wanted to find a way forward. They were hungry for time and space to reflect together (and 'together' meant with patients!).
And so, next MDT we will have an hour’s ‘protected time’ for an agenda that will include a focus on a hot topic, how we use data and how we can ensure patients are part of regular MDTs, and this could pave the way for a different model of reflective governance across the Partnership (maybe?)… Our work is done.
Meanwhile, next week
• We will have ready a People Bank of about 200 MSK patients across the patch who have volunteered to take part in ad-hoc involvement activities
• We will launch a new improvement project on how patients can better prepare for consultations after referral – it will have patients on the core working group as well as ongoing engagement work to design the information aspect of things (i.e. The forms that patients fill in about what matters to them that practitioners will have with them when they come to an appointment)
• Patient partners will lead an hour and a half workshop at our staff event on access, inclusion and diversity
• Anna and I will present plans for a more systematic way of using patient experience data
• Me and another patient partner will meet with the rheumatology team to think through better ways to gather information on what matters to patients who come through the rheumatology service
In addition, the next Patient Forum in June will focus corporately on how we use patient experience data and also be a place where we can reflect on work so far
This stuff is not shiny
A few weeks ago, I was ill. Suddenly, the jigsaw pieces of the Patient Director work are coming together. Weird. Wonderful.
Thank you to all our colleagues and patient partners for helping make this happen.
And, as I was driving home, I thought of brave Ally and the shiny improvement brigadistas. Those who seem to me to assume that infographics and conferences will change the day.
This stuff is not shiny. This stuff is hard. This stuff takes a fuck of a lot of blood, sweat and crying in toilets. It has taken three years for this stuff to begin to take off - months of building relationships, doing the ground work, making the case for a form of engagement predicated on two things:
1. People with experiences of living with long term conditions or life-changing illness, injury or disability bring wisdom and insight from the caves of suffering
2. Those same people can help practitioners and organisations in their work and to improve experiences and quality
The only thing that’s shiny (and temporary while I write this) is the sun. May you have a shiny weekend. And undertake not-so-shiny improvement.
(c) 2018 David Gilbert (all views expressed here are my own)
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