Happy Birthday Me - Musings of a Two Year Old Patient Director

by David Gilbert

June 9, 2017

I know there are a few other things going on in the world right now.

But have a break... This blog is to share learning with everyone out there. I hope it helps your endeavours to do patient-centred work better.

It is not the most entertaining blog I have written, but it tries to be practical and illustrate some of the pieces of the jigsaw.

I hope also that it persuades you that a Patient Director is crucial to bringing patient-centred work to life – and that a pool of patient partners is also the way to go.

Happy Birthday Me

It’s two years almost to the day since I came into post as Patient Director – a bold experiment on the part of Sussex MSK Partnership.

My job is to ensure that what we do is done ‘with’ patients as partners and that it focuses on what matters to people who use our service. We do this by:
• Gathering and using high quality data to improve what we do – this is sometimes called ‘patient experience’ work
• Working with patients and carers as partners – in co-designing improvement and being part of decision-making
• Making sure this work is part of everyday practice – this is about having the right culture, processes and systems that hard-wire patient and public work.

Key Features of the job are:
• Being at executive level means an ability to join up disparate ‘patient-centred’ activities and to give them a bit of oomph.
• Having had life-changing and long term mental health issues means that I can bring a human element (e.g. vulnerability) into the work and model ‘collaborative leadership’ in order to mirror shared decision-making at senior level – practice what I preach and try to get others to do the same is a less NHS-ease way of saying it!
• I do not represent anyone but try to broker conversations between patients and staff that help both sides and improve what we do and how we do it.

Two years and two nervous breakdowns later, I can see how far we have come. We have focused on getting the foundations right rather than indulging in showy engagement activities that may include people but where information gathered often goes nowhere.

Patients’ experiences work

With our patient experience survey over a year old, we now have useful regular data on what people think about our service. As well as doing the usual corporate reports, we are now providing each of our condition-specific teams with quantitative and qualitative data as to how they are doing.

I will be meeting the clinical leads next month to find out what they are doing with the data and find ways to help them improve based on the data – I also want each multi-disciplinary team (MDT) to have two patient partners on it so we do not look at data only through professional eyes. We are also regularly monitoring the survey comments for actionable issues. We have done great work to improve letters we send to patients and information on the website and other small but significant pieces of work.

Our work on patients experiences has led to us focusing one of our CQUIN improvement projects on ‘supporting our administrative staff’ (call handlers and receptionists) to get even better to what they do. We are bolstering our survey with questions on reception areas and receptionists.

We have also conducted discussions with over 50 members of staff about what we could improve and have been doing some observation work in waiting rooms. All this data will be taken forward to our Patient and Carer Forum next month and we will make the improvements necessary alongside patent partners who are on the project team.

Patients as Partners

We have eight patient and carer partners whose role is not to ‘represent’ but to be partners in improvement and governance work. So far, they have been involved in six substantial projects (on our admin systems, pain services redesign, shared decision making, patient-centred outcomes, fibromyalgia services redesign, developing a welcome pack for partners). They have also advised on various ad-hoc issues, such as improvements to letters and patient information. Their impact has been evaluated as positive – leading to changed relationships and practice, for example.

Our first away day a month or so ago led us to develop together a welcome pack that includes role and person specification, confidentiality agreements and information about the service. We will hold another planning day to develop wider recruitment and training needs. We are working with the Patient Director in the East Partnership to develop more of a joint approach and were shortlisted in the KSS Leadership Awards recently.

The next steps will be to
- Get patient partners into more governance roles, such as MDTs
- Make sure we have access to a wider pool of people who want to be involved (but who may not want to be fully fledged partners)
- Link better to community groups and the wonderful local work of the voluntary sector (I am working closely with our self-management lead, Chloe Stewart).

Patient partners are one element of our patient and public engagement work. The best bit is that clinicians and staff are clamouring for more engagement and more involvement of patient partners. We can’t yet keep up with demand!

There is no shortage of willing folk but we need to route people in better – not easy when I don’t have a formal team, but have to rely on informal influence and relationships.

Meanwhile, unsurprisingly, the patient partners want to go off the beaten track and be involved in stuff that suits their passions and skills rather than be slotted into institutional opportunities. One has started blogging, one led development of the welcome pack, one wants to do more on developing relationships with clinicians, etc.

Hard Wiring 

We are developing processes to support staff to work with patient partners, do involvement work and gather patient experience data. This will include sections in the new staff handbook, induction sessions and ongoing training events. We run a ‘what matters’ informal lunchtime learning session where admin staff get together and review what they have learned recently about patients’ experiences and what we can do to improve.

I am planning to share reflections on my mental health experiences to help raise awareness and tackle stigma in the workplace. This is part of wider work on staff and patient story-telling. Two patient partners led a session with me at our recent staff conference, one of those patient partners is part of our ‘culture club’ that focuses on our culture and values

Perhaps most importantly, we value our patient partners by offering them the NHSE recommended honorarium of 150 pounds per day for involvement in improvement or governance work. One of the keys to embedding this reimbursement policy is to have other project managers commit to matching my central pot of money, so they do not come to me ‘cap in hand’ but build engagement resources into early project planning.


The above does not do justice to the fun we've had and all the useful stuff we have done. Or the tears. I’m sure I have forgotten something.

After two years of the PD role, we can look back with some pride as to how far we have come and the main highlights seem to me:
- My relationships with staff and patient partners – The main reason I came back twice from illness was the love and care I felt from people in the organisation and the trusted relationships we have built
- I am pleased that there seems to be a real hunger for the work, and that it seems to be based on a mindset that sees patients as ‘helping’ rather than engagement as a tick-box affair. This ‘positioning’ of patient-focused work is crucial.
- I am glad that we focused on the internal hard stuff – wiring the systems, processes and culture – so as to create the fertile soil for engagement and experience work. That was a gamble that has paid off – I have always been suspicious of creating engagement activities that look good but go nowhere.
- We need to further embed the work and there is a long way to go. But that will be another story…

Get in touch if you want to know more.


If you liked this blog, read more at www.futurepatientblog.com


© David Gilbert 2017

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3 comments on “Happy Birthday Me - Musings of a Two Year Old Patient Director”

  1. Thank you! for sharing your refections. Very helpful. Might you be able to share the instruments/techniques that you use to collect your data on patient experience? Many thanks for considering.

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