I logged into this. An interesting meeting with a number of ideas arising which may be useful in different settings.
Lucy Watson – who is the Chair until December this year – ran through major issues of the year. This is the 60th anniversary of the association.
Their focus has included: Covid-19 and all its consequences, Patient Partnerships – a main plank of their aspirations for the future, Trustees – efforts to get to know each other in conversations – diversity – recruitment – periods of office – biographies on the website
They provide comment about relevant weekly news on the website. They have surveyed patients to gain an understanding of their experiences. Membership is 2,600+, 40% responded to the online survey so that is an impressive number. They have conducted 27 focus groups where again shared decision making (related to Patient Partnerships) was identified as what people are keen to achieve.
Sarah Tilsed spoke to valuing and making constructive use of lived experiences – especially encouraging patients to share their stories: Patient Voices Matter About Patient Voices – Patient Voices
Patient Voice – will be a magazine featuring patients’ stories. There is already something similar CONQUER - CONQUER: the patient voice (conquer-magazine.com)
They are working with Herts Valley PPGs to learn more of what Patient Participation Groups are doing: ppg-flyer.doc (live.com)
Key issues from patients: Accessibility, Communications and Personalisation – there is encouragement for the Patients’ Association to campaign and provide feedback to the professionals.
It seems to me that this is a good model for gathering interest and knowledge. Making use of personal stories to balance the trade in statistics and numbers makes it more likely we can get things right and produce services and actions which feel right and will be ‘owned’ by people.
I am involved with our practice PPG – early days – and it will be good to have an alliance with the Patients’ Association and perhaps build a network with other local PPGs. For sure we will be pushing for the special needs of older people and for people with dementia and their families – Having a sense of partnership and ownership at this level could make a big difference to morale – and to the quality and relevance of how we live together with illnesses.