Jane started her nursing career in 1975, working for many years in surgical and intensive care wards, later taking time away from nursing when she had children.
“Nursing then wasn’t very family-friendly and I wanted a job I could fit around my family commitments so I took up a teaching role. But the whole time I was away from nursing I didn’t feel completely comfortable or fulfilled. One day my local hospital were running an open day encouraging people to return to nursing and without thinking I signed up to do a return to practice course! I returned to nursing in 1999 and I felt like I’d come home.”
Jane’s current role as an Epidermolysis Bullosa Lead Nurse is a highly specialised position. Epidermolysis Bullosa (EB) is a rare, fragile genetic skin disorder resulting in easy blistering of the skin and mucous membranes, often leading to extensive wounds all over the body and frequent skin infections.
“There are four different types of EB, varying in severity,” explains Jane “we spend about 90% of our time with the 20% of patients who have the most severe form of EB. We support people at home and in the hospital. The role is about being the patient advocate while trying to manage symptoms, monitoring their health and facilitate their care”
Debra, the charity supporting people with EB, funds 25% of Jane’s role allowing her to spend more time with her patients in non-clinical situations like trips away from home and providing bereavement, social and psychological support.
“I feel lucky to have this time with the patients and it’s the part of my role I love the most. You become more than a nurse to them and their families, this relationship can be so important for patients living with such a debilitating condition.”
Jane was nominated for a Cavell Star Award for going above and beyond for her patients' families. Colleague and EB Clinical Nurse Specialist Annette Downe explains,
“Jane is extremely dedicated to her patients and encompasses their family into the holistic care that she gives. She ensures that family members are involved in all aspects of care as appropriate so that they feel supported as they seek to care for their family member.
“It is not without personal emotional cost at times but Jane is passionate about her role in supporting families through some of their darkest and difficult times.”
Jane reacted to winning her Cavell Star Award,
“I was absolutely gobsmacked and I cried a little! I think my team deserve the award more than I do. My team are very special people, without them I couldn’t do this job, I’m so proud of them.
“Caring for people with EB can at times be very distressing and my team are just so supportive of each other. They all go above and beyond, it’s not just me!”