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Patient Voices: Patient and Public Involvement (PPI) stories from NHS Leeds


Patient and Public Involvement (PPI) stories from NHS Leeds

These stories were told by a group of service users, carers and PPI professionals in Pilgrim Projects Patient Voices workshops in 2009. The stories reflect the personal and professional experiences and aspirations that lead to participation in the PPI process by both patients and staff.

Harry’s legacy
Linda’s father taught her important lessons about how people should be treated. But her experience of healthcare as a result of accidents, miscarriage and a mysterious, undiagnosed illness gradually strip away Linda’s self-respect. Getting involved has offered a way for her to regain her dignity and honour her father’s legacy.

I’ll do anything
Although Brian was happy to get involved in most projects, he was a little sceptical of something called Patient Voices … But making a digital story proved to have benefits that went far beyond the excellent refreshments.

An ordinary life
Aileen reflects on the only life she knows, a life of joy and sadness – an ordinary life – until one day it all becomes too much. However, becoming involved as a patient has led to a new life.

Getting involved in research
It’s Ken’s wife, tired of having him under her feet at home all day, who gives him the gentle nudge he needs to get involved. The satisfaction of having a say in how healthcare services are designed and delivered have given Ken a new lease on life – and keep him out of the house!

My careers officer said …
Andy’s early career choices were determined by his mother – but not quite in the way she intended! It’s only relatively recently that he has taken the career officer’s advice and turned to a life of caring for others, getting involved in their lives and their welfare – and finding a new life for himself in the process.

Why I became a blood donor
A terrible car accident as a child, in which Ken nearly died, resulted in his decision to give blood – and to the satisfaction that his involvement in this way will help others to live.

They’re my eyes
Years of poking and prodding and eye drops and tests and blurred vision and heavy spectacles follow a childhood close encounter with a gate, all in the service of trying to improve Angwen’s vision. But she prefers to see things in her own way, through her own eyes.

Learning to listen
Angwen recalls a travelling and caring childhood … but over the years, depression and alcohol change her lovely, vibrant mother into someone who needs to be cared for rather than caring and Angwen learns how to listen.

From Red Dwarf to black hole…and back again
Pat’s busy, full and energetic social life and career come grinding to a halt after accidents and surgery, but the expert patient programme provides her with a new frame of reference within which she can accept her new role as a patient, and begin to build a new, different, but rewarding life.

For Louise and her daughter Laura, a summer of celebration is followed by the trauma of a burst appendix and urgent surgery. Unfortunately, Laura’s recuperation doesn’t go to plan, and further surgery and care is required before normal life can resume.

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