The voice of wounded people: appreciating the life lived

27 June 2019
Volume 28 · Issue 12

I am writing this at EWMA 2019, and what an amazing start to the summer for national and international wound care it has been.

The highlight of the year is the strong representation and voice of people living with wounds that has been incorporated into our national campaigns and conference programmes. Having used narrative inquiry to explore the experience of injecting drug users living with leg ulceration for my Doctorate in Health Research (DHRes), I am all too mindful of the need for the narratives of people living with illness and wounds to be heard.

I refer back to an encounter I had with a doctor some years ago, one of the many examples I use when I discuss the dangers of labelling patients without knowing the person. I was approached by one of the senior doctors on a busy ward about a woman who had been admitted with a leg ulcer. He said to me ‘Can you possibly see this IDU* with a leg ulcer in bed 20?’. I replied: ‘For sure … does the lady have a name?’. He smiled shyly at me with a look on his face; a second of reflection perhaps. I raised my eyebrow and smiled. ‘Sure sure’ he said and quickly gave me her name.

We must be conscious that in a world so often unforgiving for a road taken in life, people should not be defined by their past, personal choices or past medical history. As a specialty, tissue viability has now embraced the narratives of our patients in all its complexity, individuality and character.

I attended the annual Tissue Viability Society (TVS) Conference in Southampton 1-2 May 2019 and presented a shared story with Lorna, one of the ‘Legs Matter’ patient representatives living with a leg ulcer. Lorna developed her leg ulcer following a history of injecting in the lower limb. Lorna honestly and bravely captured the hearts and minds of everyone who came to listen to her presentation. You can listen to Lorna's story and many other inspiring presentations on the TVS webpage: http://tvs.org.uk/leg-ulcers/. By working with people with wounds we can raise awareness of their condition, share and improve practice and increase the political profile of lower limb and foot conditions and chronic wound care.

The Legs Matter Campaign (3-7 June) was an example of how powerful clinicians can be when they come together with patients and the public, driven by a common purpose and a belief that change is possible and will happen. The campaign team includes people from all walks of life collectively portraying their stories of living with a lower limb and foot condition. The support for the campaign enthusiastically came from all over the country and has been humbling and inspiring. People embraced the Legs Matter week and flooded social media with photographs and videos of events over the week: from highly decorated stalls to groovy socks, brightly coloured compression hosiery and banners. Legs Matter pledges and legend nominations fuelled everyone's enthusiasm and hard work. Every day thousands of people's quality of life is devastated by the limited advice and support on preventing, diagnosing and treating lower limb and foot conditions. For further information on the campaign and to read Lorna's and other people's stories go to https://legsmatter.org/legs-matter-week/stories/. This is just the beginning!

I spent the first day of the campaign visiting a hostel in London for people aged 22 or over experiencing homelessness and having high support needs due to alcohol abuse. Together with Mr Lukla Biasi (Consultant Vascular Surgeon, Guys' and St. Thomas' NHS Foundation Trust), I assessed and washed the feet and legs of residents, gave advice and encouragement and suggested medical and wound care plan for their GPs and district nurses. Foot care in people experiencing homelessness is crucial; often basic necessities, such as clean socks and footwear, are a luxury they cannot afford. The residents welcomed a clean pair of cotton socks, with the men preferring the blue stripe as it reminded them of football. A pledge you could make, in light of this, would be to put an extra pair of socks in your shopping basket next time you buy yourself some, and donate them to your local homeless charity. You should not underestimate the difference your donation makes.

The next day I headed to the annual EWMA conference in Gothenburg, Sweden for three inspiring days showcasing the best international evidence, expertise and industry the world has to offer in the field of wound management. The theme this year was ‘Person-centred wound care. Who is in charge of the wound?’.

The conference kicked off with an inspiring and moving first session, ‘The person behind the ulcer’, presented by Claes Hultling; a physician and professor at Karolinska Institute, Stockholm. Hultling is the founder and CEO of the Spinal Foundation, a cutting-edge rehabilitation facility in Sweden that is dedicated to researching and developing treatment for spinal cord injury. In 1984 Hultling was paralysed from the chest down following a diving accident. He also suffered with a pressure ulcer and described the challenges this presented. He has dedicated his life to rehabilitation, research and advocacy for people with spinal cord injuries. I was completely blow away by this articulate and emotive presentation. Hultling described the details of living with his injuries and challenged the taboos of his condition. Another inspiring example on the reality of living with a wound.

We must continue to encourage patients to voice their lived experience, as we can learn so much from them. I am looking forward to what the rest of the year holds for wound care, with the Journal of Wounds Care's Wound Expo and the annual Wounds UK conference coming soon.