In an article in the Health Service Journal published on 20 January 2012, David Gilbert writes about the role of the “Patient Leader” and says that “-patient leaders have a valuable role to play in tackling the problems facing health and social care at a national and local level.” He sees people living with health problems as a huge untapped asset and an engine for co production. Although data is collected, the intelligence gathered isn’t used to inform decision making.
In this time of financial pressure, the role of service users, their carers and families is crucial to innovation and Gilbert sees a need for leadership programmes for people who aren’t clinicians or managers to get involved in decision making structures and processes.
In fact the creative solutions needed by health and social care often rest with patients and public themselves, writes Gilbert in a passionate plea for quality leadership training and development for patient representation. In a critical look at the role of the patient representative, he cites clarity as a key indicator to successful involvement at the decision making table.
“Without clarity, people rely on personal experiences and are labelled as having an axe to grind. Or in the process of trying to build relationships they cosy up to organisations and risk losing critical faculties – they are captured and tamed.”
He sees the marginalisation of patient representation characterised by too narrow recruitment of representatives across too wide a range of committees.
“Even the words are loaded. Take the phrase: lay representative. “Lay comes from “laity” invoking notions of a priesthood that excludes non members. Sterile debates about whether patients can represent others serve to distract from a proper definition of the role, which is two fold:
Community Channel – externally facing, keeping in touch with local communities and bringing in wider perspectives;
Critical friend – internally facing, flying the patient flag and offering strategic advice from a non institutional perspective.”
Being clear on this insider-outsider role can lead to better discussions on the competencies required and what learning and support should be available.
Gilbert goes on in his HSJ blog to raise awareness of the role of health champions, community development practitioners, community researchers, peer to peer mentors and even patient entrepreneurs, who coupled with the “thousands of representatives or advisors” emerge as either…
“Transformers – system facing leaders wanting to improve the health and social care system ( the representatives and advisors)
Enablers – community facing leaders wanting to improve health and well being in the community”
Ending with a critique of current training provision, Gilbert’s HSJ Blog calls for co produced learning which focuses on what matters to people as patient representatives, “for instance, how to deal with professionals and navigate the system, build trusting relationships in order to influence decision making and developing the skills of dialogue” and he also calls for progression, where a “lay” representative might go on the be a parent governor and pathways for Patient leadership which could empower citizens and co production.