Mary O'Brien

Mary O'Brien is a Research Fellow in the Faculty of Health at Edge Hill University and is currently studying for a PhD part time supervised by Professor David Clark at the International Observatory on End of Life Care at Lancaster University.

Mary's PhD involves an exploration of different genres of personal illness narratives written by people with MND.

What has been the highlight of your day?

Delegate reporter Mary O'Brien The multi-disciplinary meeting this morning included a broad range of presentations. One showed improvements in patient care following the establishment of a care centre, while another evaluated hope, quality of life and well being in patients and carers.

Two complimentary presentations addressed healthcare practitioners decision-making and patients decision-making regarding tube feeding.

What message would you give to someone with MND about what you have learnt so far?

Following the session on complementary and unproven treatments I would stress the importance of questioning claims for improvements/cure.

Which presentation did you find most interesting?

The session on learning from the experience of people living with ALS/MND because while clinical trials and lab studies are obviously important, this session emphasised that the study of ALS/MND is incomplete if we do not take into account the perspectives of those directly affected by the disease.

Who has made the biggest impression on you?

Louise Locock and Janice Brown both presented work on narratives in MND. I was very impressed by the thoroughness of their studies.

How will what you have learnt at the symposium influence your future work?

It has reaffirmed for me that the personal perspectives is vital in our understanding of the impact of the disease and has encouraged me to recognise the importance of my work in this area.