Proud to be 'Patients Included'

Dr Sarah Williams, Associate Director of Research and Improvement at Solent NHS Trust, reflects on eight years of the Research and Improvement conference and shares why she is proud to be 'Patients Included'.

As we host our annual Solent Research & Improvement conference, and launch our Academy, I am filled with overwhelming pride and emotion at what an event it has become. This is our 8th conference, and I can still remember the days when I’d be seeking out people to present and struggling to get people to attend. Now we have nearly 200 people attending and we could have filled the event twice over with research and improvement projects happening in our organisation. This is an extraordinary thing, I promise you.

I’ve pondered why this has become such a big and happy day and there are lots of reasons - we have great people working for us, who really care about the service they provide, and who will always strive to make things better. But the thing that’s made the biggest difference is really working in partnership with our patients and their families to plan and deliver this event. This has resulted in us becoming the first and only NHS Trust to receive the international accreditation for holding a “Patients Included” event for the last two years. 

‘Patients Included’ accreditation involves meeting five basic criteria –centrally involving patients in the planning and delivery of an event, patients having the opportunity to actively participate in it, providing free places or bursaries for patients to attend, making the event accessible and streaming it  online. None of this is particularly hard – granted, it can take a bit longer in the planning, but there is absolutely no doubt that the co-design and delivery makes it better.

Our story goes back to 2015 when we opened the event up to our patient ambassadors and partners to attend as delegates. We asked them for feedback and what followed was some very blunt, honest and rather sobering views on how we were getting it wrong – the language was academic,  presentations were difficult to follow, the inclusion felt tokenistic, even the pudding after lunch wasn’t up to scratch. It wasn’t easy to hear, but it rang completely true, and after that we asked our patient ambassador group to help us plan … and we’ve never looked back. Small but significant changes have seen this event become massively well attended – by both staff, patients, partners and our Board;  it is interactive and fun, the presentations are short and jargon free, and increasingly our patients present in partnership with our clinicians. I’m hoping next year they will present on projects they have led…. It feels like a celebratory event for everyone.

This goes way beyond an event, however, and reflects a positive and joyful way of working. Just like attendees at an event that felt distant and inaccessible, the health services that we deliver can feel very much the same if we don’t take the time to work with our patients/ partners on how best to manage and develop them. Any health professional who has also been a patient or a carer, will know first hand how frustrating it is when NHS systems are hard to navigate, when you don’t feel listened to, when the only way to point out a simple idea that would improve experience immeasurably is to make a complaint. Involving patients in on-going improvement can only make a service better – and it makes me rather sad that we don’t do this more.

After all, part of the NHS Constitution states patients have “a right to be involved in the planning of healthcare services .. commissioned by NHS bodies,.. in the development and consideration of proposals for changes in the way those services are provided, and in decisions to be made affecting the operation of those services.” Moreover, there is clear evidence that involvement in the way health care services are run not only makes them more effective but improves the healthcare outcomes of our patients. It shouldn’t be a ‘might do when we have time’, it should be a ‘have to do this or we will get it wrong’ activity.

At a recent event, a public partner related good public participation to being part of a family.. he said, you start as a group of individuals, you become a group, then a team and eventually a family – in which members can disagree, fight, bicker, celebrate difference but ultimately come together with shared purpose, loyalty and love. It does take time, it can be uncomfortable, but it is fabulous. I love our Side-by-Side group for the time they’ve taken to make this event better, to support patient and public partnership and for their endless honesty.  

My pledge is that this Academy will embody partnership working, with patients, service users, their families and those that work with us; and that we will be able to embed and spread a real culture of partnership and participation across all the research and improvement activity we support. Get involved peeps…., we’d love to hear from you. Sx