Archive for the ‘end of life’ Category

Motor Neurone disease – End of Life, One familys’ story (Update)

26 March 2013

This is an update from Helen Findlay, who first shared her familys’ story with us in 2009

Helen Findlay

THE FINDLAY REPORT    was first published informally in 2006.

It was written by me and other family members and relates the experience that my 85-year-old father, James went through in trying to get appropriate care after he was diagnosed with Motor Neurone Disease.

It contains a day-by-day account covering four months detailing what was happening to him and the activities of health and social care services around him in the community, in a care home and in hospital where he eventually died. It also contains recommendations from us about how his experience of care could have been so much improved and enabled him to have had a ‘good’ end of life experience.

From the diagnosis of MND until my father’s death was just seven weeks. In those seven weeks we all lived a lifetime. They were weeks coloured by stress, problems, despair, feelings of helplessness, intense sadness and tears all because of the way that my father was treated, as well as what the disease was doing to him, the way my mother, Joan, who had dementia was treated and the way we, his children and other family members were treated. But it was a time that was also coloured by mounting anger. And it is the anger that is still driving my family and me on in pushing for the problems and solutions that we identified to be implemented not just locally with the care services where my father lived but also nationally as what happened to him can be multiplied many times over.

If you want proof of this then you only have to (more…)


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