Fiona McLaughlin is a patient with ME, and a former carer. She volunteers for Northern Ireland Rare Disease Partnership and the PSP Association. Fiona recently presented a paper at the Queen’s University, Belfast ePatient conference, on how patients use social media to learn, connect, and influence.
‘At a recent conference, Maeve Hully of the Patient and Client Council commented that people often experience the Health and Social Care system not listening. Hurrah!
This is not news to many of us, the very many people who have been trying for years to feel that our stories have been heard, to feel that we can make a difference somehow. Too many of us have felt worn down by ‘the system’. Too many people with enormous expertise and experience have felt abandoned, or used, by a system that appears to still value old fashioned ‘do as I say’ attitudes over listening, involvement, and working in partnership.
Is it too much to hope that the mood is beginning to change? The Donaldson report recommended a stronger patient voice for Northern Ireland; the Public Health Agency published standards to promote Personal and Public Involvement across all Health and Social Care bodies; and the Health and Social Care Board and Patient and Client Council ran the ‘Leading in Partnership’ training course for patients and service users.
In September, Queen’s hosted an event about ePatients. ‘e Patient’ is a term used to describe patients who are enabled, equipped, engaged, empowered, and also electronic. Patients across the world are doing research and getting involved in policy. Social media enables us to raise awareness and to connect; to share and to learn together. Digital media is part of the story, but not of all it.
Locally, draft policies and strategies such as the draft implementation plan for rare disease and the medical optimisation framework, refer to ‘empowerment’ or ‘patient centredness’. I do wonder what that will mean in reality.’
Do you feel listened to by your health and care team, or by policy makers?
What would ‘empowerment’ mean to you?
How can we strengthen the patient voice in Northern Ireland?
This was originally posted on the blog of the Patient & Client Council on 2 October, 2015. It was interesting keeping to a 300 word limit!