‘My story’ – Having control in life and in death

Michael created his one-page profile to help him move from an NHS mental health facility into supported living and to help the people around him understand him as a person and not just his schizoaffective disorder.  This story shows how Michael’s one-page profile transcended its first purpose and helped to support him at the end of his life, enabling him to leave behind ‘his story’ in the way that he wanted it to be told.

Written by Nicola Thompson’s (Michael’s nurse)

Michael's one-page profile

Michael’s one-page profile

Sixty-two year old Michael is described as a man’s man, with great strength of character, someone who has pushed through many difficulties in his life, an inspiration to others and someone who never gives up. Michael was a schoolteacher for many years but resigned due to problems with his mental health. Towards the end of his life he lived in a community mental health rehabilitation scheme in Manchester.

Michael had a diagnosis of schizoaffective disorder and his physical health had slowly deteriorated as he had stage three kidney failure and excessive oedema in both his legs. Sadly Michael died within months of producing his one-page profile which then supported him and his family in his passing.

Michael created his one-page profile with the help of his key nurse so that when he attended appointments where people didn’t know him they would have a better understanding of who he was as a person rather than as a patient.  Michael was also being supported to move into sheltered accommodation and it was felt that the profile could travel with him and that important information to him would not be lost within his move.

It took Michael approximately two months to create his profile because his condition meant that he had prolonged periods where he was either too unwell or unable to work on it.  Together with his key nurse, Michael worked through the person centred thinking tools including relationship map, good day/ bad day, important to/for, communication chart and his formal NHS assessments such as the MANCAS.  The sessions always took place at his home as this is where he felt most comfortable. He also produced a story to accompany his one-page profile and his wish was that he could leave a copy for his grandchildren after he passed away as they were both too young to understand his illness and subsequent death. It was important to him that they knew what he was really like as a person.

When Michael started his journey no one knew that his one-page profile would be used to support him at the end of his life and that it would help him to communicate about his physical health as well as his mental health. In the weeks before his death it meant that the people supporting him had a greater understanding of why Michael behaved in certain ways.  It helped reduced frustration for both Michael and his support team and meant everyone was more patient with each other. Michael and others were finally able to accept things the way they were, rather than questioning them. Importantly, it enabled Michael to have better control over his life without having to continually explain the reasoning behind some of his more unusual behavior.

Michael was able to take his story and profile to hospital when he became very unwell.  Again it helped the nursing staff see Michael as a person and not just a patient.  The team was able to use the profile to see what was important to Michael and what was important for him, allowing for better communication and understanding.

Michael was a proud father and grandfather. His wife had passed away ten years earlier and this was still the source of much upset for him. Being able to express himself to his family and to leave behind a story and one-page profile that would help others feel more connected to him would have made Michael very happy – as would knowing that his story lives on and that you are reading it now.

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