The project to build the Margaret Kerr Unit at the Borders General Hospital involves many people, including the dedicated team of specialist palliative care doctors and nurses.
Palliative care is a holistic approach to care which looks after not only the physical symptoms of a patient’s condition, but also their emotional and spiritual needs. One aspect of holistic care is an innovative project which allows patients and carers to create their own digital story.
Traditionally, these have been created by the patient about an aspect of their care, or perhaps a record of their life which they wish to leave for their loved ones to remember them by.
However a digital story can be about absolutely anything – the creator chooses the topic. It can encompass photographs, video, animation, sound, music and text, often with a narrative voice.
Digital stories are typically short – around three minutes – which is a key part of their appeal and impact.
There are a wide variety of stories available on the internet, and they are used in all walks of life – in education as well as museums, and as part of public health initiatives.
NHS Borders first used the stories in a palliative care conference three years ago, when delegates were shown three very different interpretations, one recorded by a patient and the other two by women who had been recently bereaved.
“After each story, you could have heard a pin drop,” says Dr Annabel Howell, speciality doctor in palliative care who helped run the conference and oversees the digital story project.
“The stories created a great deal of debate and were a wonderful learning experience for us all. One story was about a gentleman called Forbes, who shortly after retiring got a diagnosis of metastatic cancer with a very short prognosis.
Indeed, he was too unwell to have been able to do a story himself, but his wife went on to create a story about his life before diagnosis, how he was diagnosed and the subsequent efforts by the palliative care team to get him home for end-of life-care – his wish and strongly supported by his family. The story portrayed his interests and hobbies, as well as an overriding impression of a much loved family man.
Forbes’s wife, Helen Morton, of Blainslie, said: “Creating Forbes’s digital story just a few months after his death produced a huge range of emotions. Looking through photographs was difficult and sometimes distressing, but it also brought back so many memories; reminders of many years of happiness together.
“Looking back, it was a very therapeutic thing to do at that time. Watching it now reminds me of the sadness I felt then, but also brings back wonderful memories of a loving, dignified, strong Christian man to whom I had the privilege of being married. The DVD is a very treasured memoir.”
Helen is now actively involved in fundraising for the new unit, and has allowed the fundraising team to share Forbes’ story in their presentation.
As a result of the impact created by the digital stories at the conference, the palliative care team were able to arrange for a number of patients to have stories produced by a team in Edinburgh.
Creating your own story can be very therapeutic, looking through photos and deciding what you want to say, but it should not be rushed, so it can be very time consuming. Patients’ wellbeing often varies, which impacts on their ability to produce a story.
After an opportunity was missed for a patient, her family donated funds which have enabled NHS Borders to set up the digital stories project, which is unique in the UK, as the service is provided by volunteers who act as facilitators. They have had training in the use of storyboards, the software involved, as well as listening skills, and they are supported by the cancer information service and the palliative care team at the BGH.
Dr Howell, the project leader, is keen that as many people as possible are aware of the digital story service, and the benefits that it can provide.
“Creating a digital story can be a wonderful experience for patients to share with their family and friends. Involving others in the process can also help during difficult periods when the patient feels too unwell to continue with the creation of their story.
“This service is a way of caring for each individual, creating discussion and humour while still allowing patients to be in control, despite being unwell, and we hope that as many people as possible are able to benefit from it.”
If you would like further information on digital stories, contact Dr Howell on 01896 826813. For further information about the Margaret Kerr Unit Appeal, contact Clare Oliver on 01896 828261 or visit www.thedifference.org.uk