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

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 read the accounts of what happened at Mid-Staffordshire Hospital detailed in The Francis Report.

Mix this in with a general attitude towards the elderly in this country, that seems to range from indifference to contempt, then you have a potent mix. Just have a read of what Ann Clwyd MP has to say about what happened to her husband who died in hospital or the recently published Filkin Report called ‘Ready for Ageing?

This hasn’t all just started in society generally or in the health service, it’s been going on for years. People decided to close their minds to problems while governments continued to just throw money at the NHS and then shut the door on it without going back to find out how things were going.

I always knew when THE FINDLAY REPORT came out that it would be a long process, that it would take years of constant pushing and persuasion by us to have our recommendations even listened to, taken seriously and then possibly put into practice. I know that it has been having an influence because of the numbers that my family and me have been distributing to people around the UK and abroad over the last 7 years, many of whom have been passing it on to other people – it runs into hundreds at least. This includes health and social care professionals at all levels; academics; government ministers, MPs and Prime Ministers; local councillors; civil servants in local and national government departments; officers in third sector organisations; government regulatory bodies etc.

Our report is still appropriate and copies are still being requested. I know for a fact from the feedback I have received from people who have read it that it is being used in training courses for future healthcare professionals studying at university and college; in palliative and end of life care nursing courses; quoted in research reports and books on issues around health and social care also as an example of service user involvement; used by professionals to help inform their day-to-day work on caring for people at the end of life. It has also helped to inform the work of the NHS End of Life Care Programme and the work of the National Council for Palliative Care (NCPC).

I am a member of the People in Partnership service user group at NCPC and a Dying Matters Champion. If you want to know what good palliative and end of life care should look like and how to ensure it happens then visit their websites at  and

We will keep on going as a family with our Findlay Report. It’s a testament to my dad’s courage. Not a lot has changed in the 7 years since we published it and if it takes another 7 years so be it, and another seven after that, we will not waiver in our determination. We will continue to use The Findlay Report to try and improve attitudes and practices towards elderly care generally, whatever condition a person may have, as well as particularly to keep trying to improve the end of life care experience for everyone so that it is the best that it can be for the person and all those concerned about them.

Maybe the three F’s – Findlay, Francis and Filkin – together can provide a catalyst for change. It is possible – it just takes will and determination to want to do it.

Helen Findlay

March 2013

If you would like more information please contact Helen

PDF version here –    THE FINDLAY REPORT



Can we request that you share this report as wide as possible.

Thank you



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