David Gilbert is a former mental health service user and has 25 years’ experience of working in patient and public engagement at local, national and international level. He was co-founder and a director of the Centre for Patient Leadership and the NHS Centre for Involvement. He is currently Patient Director at Sussex MSK Partnership. Here is an open letter David has written to Trusts in England, to encourage them to think about appointing a Patient Director to their management teams.
“Dear Chief Executive,
As you are well aware, in all parts of the country, the patient movement is growing. There are patient entrepreneurs inventing apps and social entrepreneurs, community development activists, people with ‘lived experience’ gathering in pathway redesign meetings.
They are moving beyond just ‘telling their stories’, They’re staying in the room to reframe problems and come up with new insights and angles; using the wisdom they have gained through suffering, wanting not to shout or merely have a ‘voice’ any more, but to be true partners.
You’ve begun to realise, perhaps, that the old way of doing engagement does not work – feedback mechanisms that don’t focus on what matters, or fail to have impact, and focus group reports that sit on the shelf.
And yet at the same time, you are distrustful that any one patient can represent others. You want to engage people, but you don’t know how.
So take a look at what we’ve done in Sussex MSK Partnership When the Clinical Commissioning Groups (CCGs) put out a contract for a partnership to oversee the entire musculoskeletal pathway and to make sure patients are in control through an emphasis on supported self-management and shared decision making, they went the step further – they appointed a Patient Director at executive level, alongside Clinical and Operational Directors.
The Patient Director ‘represents’ nobody, not even themselves. They are there to ensure that there is a culture and systems that embed ‘patient partnerships’ in everyday business. We are there to broker opportunities for patients at all levels – at corporate and pathway governance level, in improvement work, in training, in induction, in values and vision work.
We are still learning and evolving. But the early signs are good. On each of our three Commissioning for Quality and Innovation (CQUIN) projects for 2016/17, patient partners contributed to design and delivery of work on pain services redesign, shared decision making and patient-centred outcomes.
We have eight supported, trained and valued partners who will decide how to move forward and how to bring along others.
These patient partners are not ‘reps’ and they do not displace other engagement or patient experience work, but they are supposed to be in the room when decisions are made. The aim is to share power.
I do not believe we would be where we are in just two years of a new partnership, trying to transform and deliver services for a catchment population of 750,000, if there was not a Patient Director.
It is also the right thing to do, ethically, morally, philosophically, politically, personally, professionally. After all, if you were a man leading an organisation made up entirely of men that was devoted to women’s rights, you wouldn’t just set up a couple of focus groups.
You wouldn’t get a woman’s involvement lead, have a women’s sub-committee and have emotional ‘women’s stories’ at the beginning of Board meetings and think that was really ‘putting women at the centre’.
It all adds up: need for new engagement approaches + valuing patients for what they bring + creating opportunities + supporting people + patient director = a better way of doing things that can help heal the healthcare system.
So, what’s stopping you?”
Click on this link to read more from David Gilbert
Do you think having a Patient Director in organisations could work in Northern Ireland?
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