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Health promoting palliative care at the Edinburgh International Book Festival: a collaborative approach

Author: Danuta Orlowska, St Columba’s Hospice, Edinburgh, Andrew Reeves & Brigid Lydon Marie Curie Hospice, Edinburgh, Rebecca Patterson & Mark Hazelwood, Scottish Partnership for Palliative Care
24 January 2018
  • The authors at the Edinburgh International Book Festival

The Edinburgh International Book Festival (EIBF) attracts audiences from around the world every August.

This year, the Scottish Partnership for Palliative Care, St Columba's Hospice Edinburgh and Marie Curie Hospice Edinburgh occupied a large ‘outdoor room’ on Edinburgh’s famous George Street for a weekend as part of the “Reading the Last Chapter” series of events. We collaborated in using this space in several ways.

Exhibition

"It Takes a Village" by Colin Gray and the Scottish Partnership for Palliative Care is a powerful series of portraits and personal stories exploring the idea that as someone’s health deteriorates, care and support can come in many guises.  

The exhibition was on display throughout the weekend and drew the attention of those attending the Book Festival for other events, as well as passers-by popping in out of curiosity. 

Several lovely comments were received, for example:  “Brilliant exhibition!  Keep up the good work.  Happened to chance upon this with my son, so am hoping it opens his eyes to care for us when the time comes :-)”

Conversations

Two "Death Lunches" were facilitated by staff from Marie Curie Hospice and staff from both hospices were available at other times. Some very moving conversations took place and the “Death Lunches” were positively evaluated.

Information resources

A variety of Good Life, Good Death, Good Grief resources were available, including information leaflets on a range of topics, and an origami game to engage people and encourage Advance Care Planning.  Visitors could browse the resources at their leisure, or approach a member of staff for guidance. 

Inheritance Books

As we were taking part in the Edinburgh International Book Festival, we added a book-themed participative element. We invited people to write down the title of a book they inherited or would like to pass on and why this book means a lot to them.

Completed postcards were added to a display throughout the weekend. Staff at St. Columba’s Hospice were invited to contribute to a concurrent display of Inheritance Books there. Examples of books and reasons included:

  • A post-war copy of the Good Housekeeping Guide – To the useful, sensible info my mother contributed marginalia: “Yummy!”, “Don’t try this”, “Takes 10 mins longer” etc. I hear her voice still. Now, I add my comments and hope the next owner will continue the tradition.
  • A Child’s Garden of Verses by Robert Louis Stevenson – My gran bought this book for me when I was sick with chicken pox aged 6 ½. I remember her reading it to me and later reading it myself.
  • Charlie the Chimney Sweep – My granny that died gave it to me
  • A Grief Observed by CS Lewis –A moving account of being alongside someone at the end of life
  • Tuesdays with Morrie by Mitch Albom – The wisdom jumps off the page at you, a refreshing reminder of what is really important in life and what many lose sight of in their daily life.

St Columba's Hospice and Edinburgh Doors Open Day

St Columba’s Hospice was participating in Edinburgh Doors Open Day a month later. Posters and postcards advertising this were available and visitors were given a verbal invitation and asked to help spread the word.

Reflections

The collaboration with the International Book Festival resulted in positive feedback and worked well.  The festival hosts over 800 events, and attracts an audience of over 220,000 each year. 

As such, it provided a great opportunity for three Edinburgh-based organisations to practise health promoting palliative care, sensitively bringing into public spaces information and resources as well as opportunities for discussion and reflection.  

A wide range of conversations took place – some people shared their own stories, some spoke about current situations with relatives who were seriously ill, others found out about how hospice referrals can be made.  

The event was designed to also appeal to those who prefer more quiet contemplation, with the opportunity to pick up leaflets, or quietly reflect on the exhibition and the role we all play in supporting each other through the hard times that can come with death, dying and bereavement. 

Sharing our work and next steps

We created a poster about our participation for the Scottish Partnership for Palliative Care conference (September 2017) and are now sharing it here. We have already had an initial meeting with managers at the Edinburgh International Book Festival with a view to planning our participation next year.

Given the many book and literature festivals around the UK, we wonder whether these might also offer opportunities for health promoting palliative care and look forward to hearing from others who might have been involved.

Please contact Rebecca, Policy and Communications Manager at the Scottish Partnership for Palliative Care: Rebecca.Patterson@palliativecarescotland.org.uk

Find out more

Acknowledgements

We would like to thank the organisers of the Edinburgh International Book Festival, particularly Janet Smyth Programme Director, and Ioannis Kalkounos, Programme Manager.  

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