Age 12 Stacey Pidden was diagnosed with Pulmonary Hypertension (PH) and given a couple of years to live unless she went on a new trial drug which, with her parents behind her, she did. A decade later and she was given two years to live and put on the waiting list for a double lung and heart transplant – that was three years ago. She blogged her story to fellow students of the Open University from 2010, then a couple of years later started her public blog. One friend with PH stopped taking drugs and died. She shares everything openly and honestly. From age 4 she underwent heart surgery and had a couple of operations every year or so. What is immediately apparent in blog is her skill as a writer and her view that “life is worth fighting for.” She is a feisty and determined and would be far weaker had she not found her voice and even a purpose in life: she is the voice of a new NHS donor card campaign.
Based on Marc Hendricks concerns of children’s voices being marginalised I see value in blogging as a creative outlet: it combines so much that the University of Cape Town team address: giving young patients a voice – their voice, in a way that suits them. Tracey, for example, is in close contact with the 17 other in the UK waiting for a double lung and heart transplant like her: this empowers her and reassures her – there are other people in her situation and she has a voice that requires no filters. Susan Levine talks of a person’s life world.’ Tracey shares her ‘life world’ with us; whilst we may think of our community as neighbours and friends, hers includes her transplant team and regular consultants. A blog is text, voice, photos, artwork and even song; whatever the author wants in fact. It’s certain than visual metaphors as Kate Abney found are an important way to express meaning too. While hospital radio is another way to enable storytelling as Nina Callaghan has found.
Creatively Stacie is a erudite, witty and frank voice representing those waiting for a transplant. Where permitted, children, not just young adults, should be given such freedoms to communicate and share beyond the confines of their ward and so give them confidence to speak their minds, improving their lives, their motivation to live and the quality of communication with hospital staff.
A personal story, in sharp contrast to TB in southern Africa, is a skiing accident in the French alps. This is a world away from the many children around the world who spend long, life threatening spells institutionalised in hospital, and in the UK is historically a century from TB (my great uncle died of TB when he was 27 in the 1920s). A skiing accident is like a traffic accidents these days, nonetheless resulting in children being hospitalised. Age 13 I smashed my leg. It took a traumatic 36 hours to get me into hospital near home 1000 miles away during which time I was trusted with a bottle of pain relief pills. Despite this responsibility once in hospital all power rested with the consultant to whom all communicated, deferred to and waited to hear from, my mother included. If I was in pain – it had to wait.
I found myself isolated in a private room courtesy of family insurance with nothing for pain relief other than a panic button to call a nurse. As I reflect on it I would say the isolation and not getting a response when I called for pain relief was the most difficult. I had no one to talk to. Not even a radio or TV to distract me.
Only when my mother was present did I feel I had an interpreter between the medical staff and me: I was not consulted, I was told. Just as I was told six weeks later moments before I went under that my leg would be re-broken, reset and put in a new plaster which in turn would mean my missing an term of school. The consultant knew everything. I knew nothing, and the way they were treated the nurses knew less.
Decades on, and age 10, I am with my daughter who has potentially suffered a fracture of some kind too. We are in France. Although their English wasn’t fluent and I was present more effort was made, even to my exclusion, to talk directly to her: after all, it was her suffering the pain or discomfort, not me. In this instance there was no broken limb, but I can see that efforts we made to communicate directly with my daughter, not to hear an interpretation of her possible ailments through a parent with a tendency to exaggerate.
Hearing from the patient is not only better for the patient, it is also sound medical practice – increasingly so as we can take some responsibility for understanding what is wrong with us by making informed searches on the Internet.