Helen Findlay is a PhD student in the College of Health and Life Sciences at Brunel University London, on the topic of ‘Service user involvement in palliative care’.
If someone had said to me earlier in my life that one day I would be pursuing a PhD in palliative care I would have seriously wondered what was going to happen to draw me to that particular topic. I was not a health or social care professional and had been awarded an MSc in Politics from Strathclyde University. It was to be an intense personal experience that provided the catalyst.
My father, James, was diagnosed with motor neurone disease (MND) towards the end of 2005. This was after eight years of looking after my mother, Joan, who developed dementia following a stroke. The speed of my father’s deterioration was an almighty shock – he died seven weeks after diagnosis. The inability of health and social services to provide appropriate care for him and my mother was also a shock and added to my father’s torment and that of his family in trying to do the best for him. This led to our writing The Findlay Report (see link below), published in 2006 after my father had died, that details his experience and our recommendations as to how the care could have been so much better. These include the need for everyone to have access to palliative care at the point of diagnosis of a terminal illness and the need for a ‘conductor’ to help people navigate through health, social care and other services. I firmly believe that a culture change is needed in healthcare provision particularly attitudes towards palliative care.
I am an active campaigner with the UK’s National Council for Palliative Care; Marie Curie Expert Voices Group; MND Association and the Cicely Saunders Institute. I have spoken at UK and European health, social and palliative care conferences and to members of parliament and Peers in the UK Parliament about my father’s MND story and my mother’s dementia and the impact that both experiences had on their family. I tweet extensively about palliative care and the issues surrounding it (@helenfindlay).
My PhD research involves exploring understandings of service user involvement in palliative care. My work so far has led me to the belief that non-clinical and non-health professionals and ordinary people should be positively encouraged to engage in palliative care research. This would help broaden perspectives and findings that can be put into practice and help drive progress and change in creative ways.
The year 2015 marks the start of the 10th year since my father died. My passion to improve palliative care has not diminished. During the past decade I have learnt that little victories are hard won and require even more effort to maintain. Changes in our approach to palliative care are necessary and have to come.
Find out more…
- Download a copy of The Findlay Report on the Palliative Care 2020 website.
- National Council for Palliative Care (People in Partnership page).
- Cicely Saunders Institute (Patient, Family and Public Involvement).
- Marie Curie Cancer Care.
Read more ‘Palliative Stories’ on the EAPC blog
Later this month, Anne Molloy from Ireland will be sharing her story.
If you missed the introduction to this series, please click here.
If you have a patient, or a family member or friend, who would like to contribute to the series please contact the editor.
A message from the EAPC
We would like to thank everyone who has kindly contributed to this series of ‘Palliative Stories’. In publishing patients’ and families’ stories we are aware that content may sometimes focus only on one side of the story but we hope that the stories will help us all to better understand people’s palliative and end of life care experiences. Unfortunately, we are not able to give advice or comment on individual cases but we share in the distress that our contributors have experienced.
If you’re coming to Copenhagen
If you’re attending the 14th EAPC World Congress in Copenhagen, please come along to the session on ‘User involvement in palliative care – do we need bridges between the knowledge of professionals, patients and relatives?’ on Saturday 9 May at 11-12.15 pm (parallel session 11). Follow us on Twitter @EAPCOnlus – our official congress hashtag is #eapc2015