Throughout the summer of 2012, Wellcome Trust Senior Editor Chrissie Giles spent time at the Day Hospice at Princess Alice Hospice, Esher, running a creative writing group.
Kathy Birch, therapies/day hospice manager at the hospice, said: “We decided to take part in the project as it was a great opportunity to work in partnership with a well-respected organisation such as The Wellcome Trust. My team and I saw it as an additional opportunity to work with our patients in a non-medical way. Sometimes we can get caught up in the clinical care. We wanted to find out more about our patients as people and who they are in a wider social context.
“This was also a time for our patients to explore themselves. At a time when many of them are re-evaluating aspects of their life, this was a way of them gaining increased emotional independence, which is a very important part of a patient’s journey.”
Just as patient care at the hospice is tailored to the individual, so too were the writing sessions and discussion groups that made up the project. Chrissie Giles reflected on the attitude and flexibility of the sessions, which may have played a part in so many different people getting so many different things from their involvement.
Chrissie said: “One of the nicest but potentially derailing aspects of the writing group was our love of chat. Towards the end of the course, I asked the writers to reflect on how the sessions had been. With characteristic insight, Guncho wrote: ‘the more we are asked to write, the more we want to speak. It’s like we are starved of company – myself included’.”
Kathy Birch added: “The partnership was a great success; it met its immediate aims and has in fact gone over and above. The resulting publication benefited the initial group, but is now being seen and read by a variety of people connected to the Hospice – patients, volunteers, staff from other departments and it will also be used as an educational tool.
“The project was an extension of our creative therapy and discussion groups, it was wonderful to have the additional experience and support of Chrissie the author of the book. Working with patients, hearing about their lives and finding out additional information about them as people, is going to benefit their future care. I am beginning to implement a project to improve communication with our in-patient unit. The Day Hospice team know what makes our patients ‘tick’; this value added information helps the team care for them in a more informed way. By taking into account views, backgrounds and personal experiences each patient can have a tailored approach to the care and support they receive.”
In a series of posts for the Wellcome Collection blog accompanying the exhibition Death: A self-portrait, Chrissie reflected on her experiences there and showcased some of the writing produced by group members. These stories have now been gathered together as a single publication that is set to have a long term benefit for patients at Princess Alice Hospice and possibly beyond.
The voice of the patient is paramount and each story that features in the book and has been included on the blog, highlights the different ways in which the patients used the opportunity to express themselves and consider their current, past and future situations.
Jackie, one of the patients taking part, said: “Being part of the group had helped give me a bit of confidence about writing. My head’s such a muddle, this experience has shown me that I can still get my thoughts down on paper and express myself. My piece about my son is very special to me. When I read it to the group – I cried. My family loves the poem, especially my mother, who reads it aloud to everyone who will listen”
Another patient who used the sessions to express views on a loved one was Rory. He was a regular participant and was seen tapping away on his iPad. The tablet became his way of communicating via a text-to-speech app; a jaunty electronic voice explained to Chrissie that he had a neurological condition; it was this same voice that brought smiles to the group as he tapped out a piece about his father.
In response to this piece, Rory wrote: “I am quite a basic person and describe things as they are – nothing too deep – and that way quite a vivid picture can be built up of how I see things. I think I have captured the many attributes of a great father, friend and mentor.”