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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.
In order to function legitimately, the Department of Health has to authorise Clinical Commissioning Groups. To find out more about what this means click here for the guidance document issued by the Department of Health in September 2011.
Stakeholders engaged in developing the process have told the Department of Health that there should be “meaningful engagement with patients, carers and their communities” and the competency should enable:
“CCGs … to show how they will ensure inclusion of patients, carers, public, communities of interest and geography, health and wellbeing boards and local authorities. They should include mechanisms for gathering a broad range of views then analysing and acting on these. It should be evident how the views of individual patients are translated and acted on. CCGs need to promote shared decision-making with patients, about their care.”
What benefits do people think the LINk can bring to the role and responsibility of Patient Representation at CCG level? How can LINk Devon best promote and support this type of involvement in commissioning? The role of the network is to enable people to comment on the quality and standard of care and whether it could or should be improved.
This might mean, for example, raising awareness of the idea that the relationship between patients and GP is a positive one of shared decision making about which treatment or care to be given. Another possible way in which CCGs could take account of people’s views is to record patient choice in such a way as to ensure that commissioning decisions about which services to make available reflect the choices and needs expressed by patients. It might also mean, what are the plans to involve lay people in monitoring the quality and standard of services? What do people think are the acceptable qualities and standards of services ? Is whatever’s on offer good enough for me and my family?
If you have any ideas or queries about how Clinical Commissioning in Devon is developing, please get in touch with us so we can answer your questions and add your views to those of others to feed into the development process. We will add and update the content re Authorisation as and when it becomes available, but if you have any useful links or snippets, please let us know using the comments box, or email, ring or write to us!