Another Year of Working on What Matters - a Patient Director Healthcheck

by David Gilbert

February 17, 2018

This blog is based on a forthcoming report I am writing as Patient Director for our Patient and Carer Forum. It is a review of the year from April 2017 to March 2018. Forgive the slightly institutional tone, but I hope it provides a flavour of what we are doing, and the role of a Patient Director.

Of course, this patient-centred work is being developed during a time of huge challenge. At a time also, when it would be easy to forego development work of many kinds, particularly in the field of 'patient and public engagement'. This would be a huge mistake in my mind, and so it is to the credit of my organisation and colleagues that this work continues to be supported.


The Sussex Musculoskeletal (MSK) Partnership (Central) receives referrals from GPs of people who have joint, muscle or bone problems. The services stretches from Brighton and Hove through Mid-Sussex and Horsham to Crawley. Clinicians screen referrals, and many are offered an appointment at our ‘specialist’ clinics, with ‘advanced MSK practitioners’ or physiotherapists (often working alongside consultants and others, such as psychologists).

The Partnership is a ‘Lead Accountable Provider’. It comprises Sussex NHS Community Trust, Sussex Partnership Trust, HERE (a social enterprise) and The Horder Centre (a charity). In Autumn 2015, three clinical commissioning groups (CCGs) pooled a total of £50m per year for five years to us, so we could run a better system for people who use services. We want to get it ‘right first time’ so that people do not have to go here, there and everywhere for different diagnostic and treatment interventions. And we, like the NHS rhetoric always says, want patients to be at the heart of what we do.

The Partnership made a brave decision to appoint the first Patient Director – someone who has had experience of a life-changing illness, injury or disability (in my case, mental health problems) and can harness these experiences at senior decision making levels. This role ensures that patient leadership is embedded at senior level, within an executive team that includes a clinical director and managing director. This models shared decision making at corporate level.

The Patient Director’s role is to help The Partnership focus on what matters. This includes:
• Hard wiring the work – embedding ‘patient-centred’ cultures, systems and processes
• Learning and Improving - Making sure we learn from, & act on, patients’ experiences data
• Patient as Partners - Supporting people to be influential, valued partners in decision-making

The portfolio of work overseen by the Patient Director

The work below reports specifically on the portfolio of work led by the Patient Director and augments the Partnership’s other work to ensure we focus on what matters, and the work of our lead on self-management and shared decision making, Chloe Stewart. It doesn’t include all the more ‘invisible’ stuff I try to do, developing a shared understanding of patient leadership and patients as partners, and/or helping support a different way of working – and, of course, I am far from the only one doing that. NB. I work three days a week for the Partnership.

We do not have a Patient and Public Engagement and/or Patient Experience Team. The work relies on informal relationships across different locations and pathway teams. We work closely with hardworking and inspiring managers, clinicians and support staff colleagues. Crucially, it also involves Anna Roberts, Quality and Improvement Officer, who joined us late last year, and previously Jo Howe. Together, we have worked hard this year to ensure the following stuff happens.

1. Patients as Partners (and other patient and public engagement work)

We have nine patient and carer partners (PCPs), Iris Keppler, Stan Pearce, Jenny Preece, Lesley Preece, Marilyn Walker, Jane Watts, Norman Webster, Cherry White, Lindsay Whittaker. They bring professional and personal wisdom alongside their experiences of using our services. PCPs are not ‘representatives’ or there to provide feedback, but are ‘critical friends’ who check assumptions, ask questions, provide insights into reframing issues or identifying problems, change dynamics and model collaborative leadership.

My role is to broker opportunities in improvement or governance & support them to ensure they have the capacity and capability to be effective. Patient and Carer Partners augment other involvement and feedback work. In the last year:
• We have put systems in place to hard-wire the work, including dedicated budget, reimbursement policy based on NHS Guidance, monthly reflective meetings, role and person specifications
• PCPs have worked on eight improvement projects over the last two years, three this year. On admin processes, pain services, shared decision making, patient outcome measures, physio self-referral, support for admin staff, integration of physical and mental health
• PCPs attended three multi-disciplinary teams, MDTs (pain, hip & knee, physio), sit on key governance groups (eg Clinical Quality Group) attended cross-organisational Quality Summits & were central to our recent CQC inspection
• PCPs led workshops at last year’s staff conference (on patient partnership) & will lead a workshop on access this year. We plan a patient-led summit in Autumn 2018 on access
• PCPs presented at local and national events (e.g. Local GP conference, national ‘Rehumanising care’ event, forthcoming; NHS England Right Care event on shared decision making; The Snow Community, national network for Patient Leaders)
• PCPs have been involved in recruitment processes and internal education sessions
• PCPs have developed three strategic priorities for next year:
A. Quality and patient experience (better use of PREMs data and dialogue with staff about quality on MDTs)
B. Being cared for as a human being (integration & continuity in rheumatology and pain)
C. Access and inclusion (beyond waiting times)

Other engagement work includes:
• We have run seven patient and carer forums attended by about 100 different patients/carers and members of (clinical and support) staff that have looked in depth at patient-centred improvement work (e.g. Shared decision making, self-management, use of PREMs data, patient and public engagement).
• We have helped clinical champions and other individual project leaders (e.g. For physio self referral) to undertake one-off engagement activities and/or feedback methods.
• We have developed a ‘People Bank’ of 200 patients who want to be more involved. This will involve identifying and brokering opportunities for engagement and a regular newsletter.

2. Learning from, and improving, patients’ experiences

Pathway teams (nine of them) receive weekly patient comments. We now audit these monthly & have processes to monitor and report on learning and action taken:
• Comments have been used as plaudits to raise morale
• Comments have helped us improve reception interface, take action on privacy, feed back on rare instances of poor clinical conversations & explore communication issues (e.g. appointment and clinic outcome letters, explanations regarding follow up appointments).

Pathway teams receive a quarterly PREMs (patient reported experience measures) survey report that provide trends against baseline data for the pathway across themes such as overall experiences, ‘pre-appointment’ experience, what happens at the consultation (including care & compassion, quality of information & involvement). We now have processes in places for monitoring and reporting actions taken that are aligned to the six-monthly corporate reporting of pathway leads on other aspects of activity and quality
• This data has assured us of high rates of ‘satisfaction’ & allowed us to see that experiences of waiting times and environment have improved as a result of corporate actions.
• This data allowed us to ensure targeted strategic priorities for patient partners for 2018/19
• PREMs data (quantitative and qualitative) has played a major role in focusing our CQUIN project (see below) on what matters
• We are piloting innovative methods to ensure patients analyse and discuss PREMS data (including analysing ‘actionable’ comments, patients on MDTs, exploring experience data in more depth in the spine pathway, holding a ‘special’ hip and knee MDT on PREMs)

We have improved processes for complaints and incidents, for generating and integrating learning from complaints and incidents with PREMs feedback. We are sorting out glitches in the PREMs data gathering work, like ensuring links work, trying to cut down on duplication of questions asked, etc.

As part of an Improvement Project about enabling support staff to give a great service, we:
• Ran weekly ‘what matters’ informal learning sessions for call handlers and admin staff to generate learning from what they know about patients’ experiences
• Gathered data from 100 members of staff and six hundred patients around issues for improvement in enabling support staff to give a great service
• Have co-designed and run five training sessions for call handlers on routine and difficult conversations, for new and experienced staff, with about 25 attendees
• Have run two clinically led sessions for admin staff about demystification of clinical terminology attended by 16 staff
• Developed accompanying materials (glossary of clinical terminology, checklist for call handlers) that are being included in the new staff handbook
• Provided improvements, such as new chairs designed specifically for people with MSK in our waiting rooms, access to water, quieter environments, improved signage and access support for patients to our clinics
• We have developed a new role specification for receptionists that better values and allows them to focus on what matters to patients and carers

If you have got this far, well done. We have got this far too. And we think it's well done. Loads more challenges. Onwards and upwards.


Please note, the information above is purely based on my perceptions and is, of course, my own personal opinion.

(c) 2018 David Gilbert

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