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Teenager becomes first UHNM paediatric patient to receive ventilation at home thanks to a new specialist nursing role

A Birmingham teenager has become University Hospitals of North Midlands NHS Trust’s first paediatric patient to receive ventilation at home thanks to a new specialist nursing role.  

Children, young people and their families with neuromuscular disorders across Staffordshire and Stoke on Trent and some parts of the West Midlands are receiving the extra support they need with the official launch of the new role from WellChild, a national charity for seriously ill children.

Tracy Procter, WellChild Neuromuscular Nurse for Complex Care, is based at Royal Stoke University Hospital and supports children and young people who have complex health needs. She aims to reduce the number of occasions and overall time young patients have to spend away from home visiting hospital and improve their quality of life and experiences of health services. 

WellChild has funded the role to provide expert advice and practical and emotional support to children, young people and their families in the region with a range of neuromuscular disorders. 

Joshua Lilley from Birmingham who has duchenne muscular dystrophy has become the first paediatric patient at UHNM to have ventilation at home. Normally, patients would need to be admitted for three to five days for ventilation, however with Tracy’s guidance and care this is now possible within the community without needing to travel or visit hospital.

Joshua’s mum, Natasha Lilley said: “Tracy came to our house and showed us the process of the c-pap machine, explaining in detail everything we would need to do. 

“Once Tracy had visited, we then had daily phone calls from her to make sure we were doing everything right which was also really helpful. Joshua has been a patient at UHNM for five years so to be able to benefit from this service is fantastic. It is so much easier than having to travel and attend hospital appointments.”

Tracy said: “I am passionate about advocating for the best interests of children, young people and their families. I believe in empowering them by providing clear communication and support. My background supporting children in the home and in intensive care has given me a deep understanding of the unique needs and challenges children, young people and families face.

“It is phenomenal that we can now support patients like Joshua in the community and be able to provide services which normally only take place in a hospital setting. To be able to carry out this service for families is fantastic and this new role will enable me to carry on providing this service to many other families.”  

Tracy’s manager, Sadie Clayton, Nurse Consultant said: “This post will bring vital support to children, young people and their families who have neuromuscular disease and complex care needs which often require involvement of many specialist teams, frequent health care reviews and multi-agency contacts. Tracy will work closely with all to ensure a high quality service is provided. UHNM is delighted Well-Child have supported this specialist role for the benefit of our patients and families.”