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Patient Voices: Power of Story


Power of Story

‘Continuing to be me’ is an important part of recovery for older adults. This Patient Voices workshop was part of the NHS South London and the Maudsley Foundation Trust’s ‘Power of Story’ project, which aims to gather the unique experiences, life stories and thoughts of service users, relatives, carers and staff. Opening this ‘book of stories’, will help to better understand how mental health impacts our lives and help develop future services.

Ann’s recovery
This is Ann’s story.

Every morning I’m happy!
This is Sylvia’s story.

This is Isabel’s story.

Wedding dress
This is Tamara’s story.

Long road home
People travel a long way in the journeys through life. They may physically move away from home, culture and family. They may, in crisis, be cut off from their memories, their past, their identities. All of these things are challenges that staff who support and work with the elderly or people with dementia face every day. Attending to the patient, and their physical needs is often paralleled with attending to their whole being, their culture, their story.

My mother, my patient
It’s a long way from the Philippines to the UK, but a journey many care staff make. They come with many motivations, but central to them is the desire to care. Nelia comes to the UK to provide care for the elderly, and to provide a better life for her family in the Philippines. That journey brings her commitment, devotion and skills to her elderly clients in the UK, but when her mother develops dementia back in the Philippines, her experiences of caring in the UK also feed back into her awareness of her mother’s health back home.

My second family
Priscilla comes from a family where careers in the caring professions are common – a family where the old care for the young and, in turn, the young care for the old. She chooses to work with older people, and is able to bring together her experiences of caring for her grandmother and her clients. Now she has two families.

Everybody has a story
When a client comes in with dementia and hardly any life story left, it’s up to the staff of Greenvale to help her to rebuild that story, and to recapture the woman they can see beyond the dementia.

I remember…
Always a carer, Roy has grown in stature and experience over the years, but remembers so many experiences. Amongst the things he remembers are all the people with dementia, families and care staff he has worked with over the years. One special set of memories is of the stories of a Polish couple who survived the camps, staying together until Jan developed dementia and became one of the people who have changed Roy’s life, and made him who he is today.

A debt repaid
People travel the world for many reasons – to work, to grow. A poor trader in Ghana, Sam’s mother supported his studies so that he could become a successful man in the UK. He always wanted to repay her kindness and, while he did send money to support her, he could never get home to pay her back in other ways. When she dies, he decides to change careers, become a carer, and repay her by caring for elderly people in the UK.

The book of Stephan
Susan’s loving, intelligent partner develops early onset Alzheimer’s at 58. The whole family comes together to care for him, and to learn how he likes to be cared for. They develop and document their experiences and expertise in the ‘Book of Stephan’ and, when Stephan needs to go into residential care, they pass on their learning to those who will be caring for him. But, time and time again, their expertise is ignored and Stephan’s future looks bleak. Then they find a care home where everyone, from Consultant to Cleaner, is prepared to read the book of Stephan…

No shrinking violet
John is an incredibly fit, competitive cyclist. He has developed skills of self-preservation and determination that come into play in life-saving ways, when he feels that a diagnosis of IBS in masking symptoms of cancer. Eventually his persistence and ownership of his own health pays off – and a colonoscopy reveals a large, but operable tumour. But he’s not able to lower his guard, even at that point, as no appointment letter turns up. With the assistance of his PALs service, his own assertiveness and stamina, his operation is scheduled, successful, and allows him to return to the cycling he loves.

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