Sometimes A Man - Reflections of a Patient Director

by David Gilbert

March 7, 2019

I have not always found the role of Patient Director easy. But it is blossoming into one of the most worthwhile professional experiences of my life. Spring is almost here – in more ways than one.

Maybe it’s the fact that our amazing Patient and Carer Partners (PCPs) are making a difference. We have eight paid, valued and supported PCPs working in improvement and governance roles. And we have been hard-wiring systems and processes for partnerships. And the work is bearing fruit.

From the establishment of our service for people with Musculoskeletal (MSK) conditions, PCPs have been involved in improvement and staff training (e.g. leading workshops during staff conferences) and members of our regular Patient Forums alongside staff.

More recently they are taking the lead – establishing their own priorities, co-designing and delivering projects, being part of Multi-Disciplinary Teams (MDTs), eyeballing patient experience data and overseeing improvements and getting involved in decision making.

PCPs have helped ground the service in what matters. As one clinician noted: “This (patient and carer partner work) does improve relationships, but more importantly for me it simplifies processes, bringing everything back to our main purpose of care. We can easily become wrapped up in our medical mind and ‘fix it’ mentality without much reference or consideration to our actions, all with extremely good intentions”.

Last year, they were integral to one of our CQUINs - projects that garner additional support from the CCG. They helped support administrative staff (call handlers and receptionists) to enhance patients experiences, for example triggering improvements in waiting room environment, changing role descriptions for receptionists so as to focus on patient-facing duties and helping to design call handling training.

That project has bloomed into one where support staff and patients are working together to improve how we gather information about communication needs of patients, improving information provision and making clinics more accessible.

We are piloting having PCPs as equal members of MDTs with clinical staff. They will bring in patient experience data and lead a regular agenda item on ‘what matters’. They will help explore quality and safety issues – a recent discussion looked at expectations around diagnostics. For me, this is shared-decision making writ large. Patients modelling collaborative and reflective dialogue (that’s the posh phrase for it).

One member of a MDT noted: “It is possible to have a more person centred health care service, if people are open to working differently and widening their horizons as to where solutions to improvements may be. Patient partners hold an experience of the systems that we want to improve. We need commitment and adequate time allocated to exploring this from both sides to ensure that roots can grow, and that they become part of the make-up of the health care service as much as any clinician or admin team member”.

Last week, our Darzi Fellow, Emma Lloyd worked with patient partners, staff and the local voluntary sector to hold a ‘Pain Matters’ event for people with fibromyalgia and MSK pain. We had 150 people through the door. The room was buzzing so much, it felt like a massive peer to peer fest rather than an engagement event. I have been talking to our pain services lead, Karen Cox about repeating the event and linking it with work she is doing on redesigning pain services. We will be talking about this at our next Patient and Carer Forum.

Meanwhile, having finally got the hang of process mapping (actually, having got help from our wonderful project manager, Imogen), we have nailed what we do with free text comments from our regular patient experience survey. It is now clear what data should go where – which to corporate level and which to ‘pathway’ leaders and teams – and how it links up to the MDT work (above) so as to improve what we do.

We are developing a stronger data gathering programme and are about to bung in (that’s a technical term) a few questions into our regular survey on ‘how people want to receive information from physiotherapists and our advanced practitioners’. This flexible approach to data gathering then links up with the accessible information project (above).

In fact, it all links up.

The ‘Sussex Model of Patient and Carer Partnership’ is one that rests on a triangle – between the role of Patient Director (at executive level), the Patient and Carer Forum (at corporate governance level) and the Patient and Carer Partners (involved in improvement and governance). It is backed up by systems and processes to ensure the work becomes part of everyday practice.

This triangular foundation connects to other work that helps us to maintain a focus on what matters – learning from patient experience data and wider engagement work. It also links closely to shared decision making, self-management and well-being (programmes of work led by our incredible self-management lead, Chloe Stewart).

We think this model is one that other people can learn from.

At the same time, my own professional confidence is stronger than it has ever been. As many know, I have had bouts of mental health problems and have sometimes struggled to feel my own worth in this role.

There are still challenges – we need to communicate better the work of the PCPs so people know what they can do (and can’t sometimes, because they don’t have the support that staff take for granted); we need to make sure we close the loop on data – to monitor actions and impact; we need to make sure that patient engagement is built in at the beginning of all corporate improvement projects. And, for patient partners, we need to put in better learning and support so that they can be even more effective.

Meanwhile, in my corporate role, in the last six months I have felt better able to support my amazing colleagues, strategically and operationally. I have been less adolescent and needlessly challenging when stressed. I like to think I am a tad more creative, solution focused and insightful. I enjoy the work more, and look forward to going into the office. What more could a boy – sometimes a man – want?


© 2019 David Gilbert

If you liked this blog, see more at


All blog posts
what we do

7 comments on “Sometimes A Man - Reflections of a Patient Director”

  1. I always find your blogposts thoughtful and interesting. From a patient perspective I think the real work to be done in your service is with the gatekeepers, the call handlers and list managers who have more than once removed me from a list when they shouldn’t have. It has taken so much arguing, stress, distress and time to find my way back to the professional I was originally seeing, who then says “that shouldn’t have happened, you should have called me” - when that’s precisely what I did x months ago... These failing processes sap physical and mental health when we are already sick. I've found your health professionals great when I eventually get to see them, it’s the systems and processes, especially around gatekeeping, that I find so problematic.

    1. I am sorry to hear of your experiences. I have been working at Sussex MSK Partnership (Central) for almost four years. In that time, I have systems improve and those who take calls, manage clinics and staff reception areas as kindly people who have developed a lot. Many of them have become good friends. So, this is not nice to hear 🙁

  2. I have just read your blogpost, I friend passed on the link to me, and I’m not sure whether I feel encouraged or further discouraged. I have been trying to get patients in my hospital department more involved for the last two years now, with little success I’m afraid. Maybe I’m missing a trick and need ideas. I have done two talks at patient events, written newsletters, helped design surveys, been to department meetings, all to no avail. We even had to cancel a coffee morning due to ‘patient apathy’. It’s hard enough trying to get the departmental staff to canvas patient involvement (I don’t think they have tried to recruit any others apart from me). Any ideas?

  3. Don’t mind me, I’m just feeling very let down. I’m a patient myself and remember how releaved I was to chat to others with my condition when first diagnosed. I can’t understand why others in my area with the same long term condition don’t seem to want to be more involved and keep up with advances in treatment options etc.

Leave a Reply

Your email address will not be published. Required fields are marked *

patient leadership newsletter

Sign up to our Patient Leadership Newsletter and get a free eBook

When you sign up to the quarterly Patient Leadership Newsletter you will receive a free download of The Rise of Patient Leadership, an eBook collection of David Gilbert's most popular articles.

Get a free eBook of David Gilbert's most popular articles

Subscription Form (#8)