Patient and Public Engagement for Real: What we are doing at the Sussex MSK Partnership

by David Gilbert

April 23, 2016

This blog serves two purposes. Firstly, it’s going out to colleagues - the fab Clinical Leads and other staff - to update them on our patient and carer work; secondly, as a public post.

My role is all about how Sussex MSK Partnership (Central) can work with, and for, patients, carers and citizens. As Patient Director  I want us to have the sort of cultures and systems to make this part of everyday business. And make sure this matches our vision of providing people with a great service, helping them look after themselves as best they can and be part of decision-making. This includes all staff modelling trusting relationships between each other and with patients and carers – wherever they are in the organisation.

In Control: Self-Management Support

We have finalised agreements on work with the National Rheumatoid Arthritis Society (NRAS) to provide self-management programmes for people with Rheumatoid Arthritis. In the Autumn, a NRAS worker will be ensconced in our offices co-ordinating this work.

Meanwhile, The Fed – who are leading work on helping people with MSK conditions to be active in the community – held a launch event for the project ‘Right Track’ in Brighton last week. Over a hundred people came to learn about self-management and what the voluntary sector are up to. It was a busy and buzzy event.

At one stage, 25 people from the Chinese community rolled up. The interpreter asked if we could hold an impromptu Q&A for them over lunch. But no, we couldn’t do that could we? We had an agenda set up, didn’t we? Step forward Gareth, one of our physios, who said ‘let’s do this’ and took them through what our service can do. We brought lunch to them and shifted the agenda. It felt like a symbol of how the NHS should adapt professional-centric behaviours to patients, rather than fit them in to our institutional systems!

From this, Kieran Barnard, one of the clinical leads, has invited The Fed to come and present the Right Track work to the MDT (Multi-Disciplinary Team) on hip and knee conditions. The voluntary sector will also come to the next GP Education Session where we will be talking about our service to GPs and Practice Managers across Mid Sussex and Horsham and Crawley – partnerships in action!

The most exciting news is the arrival of Chloe Stewart, our new self-management lead (though I prefer the label ‘self-care’!). She will work with clinicians and staff to get self-management right up there on the clinical agenda. We will work together (and with the voluntary sector and our Patient and Carer Forum) to develop a self-management strategy.

This will also bring together self-management work we are doing in the pain service, fibromyalgia and probably areas I don’t even know about yet! The next Patient and Carer Forum in late May will focus in depth on self-management support.

What Matters: Improving Patients' Experiences and Outcomes

Data is rolling in from our new patient experience survey where we are asking patients who have been discharged from our community specialist clinics (yes I hate that word ‘discharge’, as most people know). Clinical leads – we have one for each of our ‘pathways' - will receive data monthly about what people think about their service.

I will be writing quarterly reviews of what has been done with the data and identifying cross-cutting corporate themes. There is no point in gathering data if we do not do anything with it. You can find out more about my thinking on this in a report I wrote last year ‘making sense and making use of patient experience data’.

Meanwhile, one of our other clinical leads, Hilary O’Conor (lead for ‘shoulder and elbow’ – I know, it’s a bit like that song ‘heads, shoulders, knees and toes…’). Anyway, Hilary has been leading fantastic work on finding out whether patients feel involved in decisions about treatment options. Starting off in hip and knee OA (Osteo-Arthritis) we are implementing the SURE Score – a measure of people’s confidence on whether they have been involved.

At the same time, in our spine service, Johan Holt, is leading work on helping clinicians and patients assess ‘pain chronicity’ using a measure called ‘STarT Back’. This will help clinicians identify whether patients are at risk of developing chronic back pain and therefore who needs targeted interventions.

Zoe Schaedel, our lead for how we work with primary care, is hatching plans for ‘patient-reported outcome measures’ (PROMs). We will be rolling out the MSK-HQ survey that has been designed to look at outcomes for people with all MSK conditions. How we roll that out is a challenge – we don’t want to over-burden patients with questionnaires! We need first to start in the spinal pathway and then see where next.

Back to patient experience: I am kickstarting a project with a Senior Patient Care Advisor, Stephen Cracknell. He helps to manage our Patient Care Advisers (PCAs) who staff the telephone lines and support patients (e.g. in booking appointments, dealing with their issues). We believe that PCAs know a lot about what matters to patients, as they are talking to them, and listening to them every day (just like clinicians).

The ‘PCA Sponge’ project (better title needed?) will work with PCAs on how they can better pick up on patient experience issues, either being able to deal with them on the spot, or better translate what they find out into service improvements. I am very excited by that one!

Patients as Partners

Next week, we go to the CCG to find out whether our plans to develop a People Bank – a dozen trained, supported and paid patients/carers – gets the green light. This will mean recruiting folk over the Summer so that they can get involved in service improvement work, governance (e.g. on the MDTs), research and training.

Already this week, one of our early People Bank members, a patient with RA, joined a discussion of how we take forward our work on instilling our vision and values. Another patient is set to help us with our work on redesigning pain services (alongside people from the voluntary sector).

If you are reading this as a person with a MSK Condition… watch this space. We will be recruiting for members soon as we widen this pool of talent who should get access to the most wonderful ‘patient leadership’ training in late Autumn.

We have patients and carers lined up to join the rheumatology MDT and as the work to redesign pain services evolves, I will be working with Jonathan Kenyon, the lead there, to support patients and carers to be on that MDT as well.

Better information and communication

Our website has improved, though it’s by no means perfect! Guided by the sterling work of Marina Asaad, our comms lead, we now have better patient information up there. The work on improving appointment letters is getting good feedback and we hope it leads to patients being better prepared for consultations. And I am going to work with Paul Macauley, part of an internal improvement team, on developing a bank of digital patient stories.

We need to match how we communicate with health professionals about service changes with messages going out to the public. We will be developing our communications strategy alongside our neighbours – the Sussex MSK Partnership (East) who have a terrific Patient Director, Anne Sabine.

Final word

One of the best things so far about my (not quite so) new role is the emergence of trusting relationships between myself and the clinical leads – and the way they just ‘get’ the patient partnership agenda.

I got a call from Kieran Barnard this afternoon. We discussed how patients could be involved in research about a particular type of knee and hip surgery (especially when there is evidence that it doesn’t work for all patients). This could lead to focusing shared-decision work in this area.

I am struggling with how to keep up and communicate what I’m up to. I am having exciting, but quite fragmented discussions with all sorts of people. I want to find ways to frame information about the patient and carer work without overburdening people with numerous useless emails.

It was Sally York, our new physio lead who suggested a regular blog for clinical leads. And I think it will be useful for other staff, and for a wider audience.

So if you like it, praise me. If you don’t, blame Sally 🙂

(c) David Gilbert 2016

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2 comments on “Patient and Public Engagement for Real: What we are doing at the Sussex MSK Partnership”

  1. Have you come across Basecamp? A repository for ideas in the cloud- I've heard it mentioned again this week. Also fantastic achievements and we need to have a conversation some time about self-care vs self-management-I do both!

  2. Fab blogs you're producing, David. I love the Chinese adjustment, the 'sponge' (great name IMHO) and the People Bank. Revolutionary work you're doing - and it shouldn't be revolutionary, but there are a lot of barriers and power structures (set up for largely unhealthy reasons) that need breaking down. Your pioneering work can all be replicated elsewhere. So it's a service to everyone. What's the situation with 'mental health care' in your trust?

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