Vital support for seriously ill children in Manchester
Seriously ill children and their families in Manchester are receiving vital support on their journey from children’s to adult services thanks to the work of a WellChild Children’s Nurse Janice Fauset-Jones.
The post was only made possible thanks to the generous support of the St. James’s Place Charitable Foundation, which has enabled WellChild, the national charity for seriously ill children, to fund the WellChild Children’s Nurse post at Manchester University NHS Foundation Trust. Janice is now hard at work helping children and young people in the Manchester area.
WellChild Nurse in Manchester
Janice is based at Royal Manchester Children’s Hospital (RMCH), Part of Manchester University NHS Foundation Trust.
Through her unique post as Transition Nurse for Complex Needs and Long-Term Ventilation, she supports young people through their transition to adult services, working closely with colleagues in the community, hospitals and other specialist centres to ensure the highest quality of care. As the WellChild Children’s Nurse she is providing specialist advice as well as emotional and other practical support for the whole family.
The WellChild Nurse posts seeks to support families at home to minimise the number of times they have to be admitted into hospital which can be upsetting for families. Through this post they receive close support in the community from a nurse who can help parents gain in confidence and guide them through difficult times.
Janice is trained as both an adult and children’s nurse and worked in a variety of settings across acute and complex care in paediatrics for the first 10 years of her career, such as Neurosurgery, Neurology, High Dependency and Long-Term Ventilation. During this time, she learnt to care for children, young people and their families with complex neurological/neurosurgical illnesses and also gained short and long-term ventilation experience.
She worked in her last role as Nurse Specialist Practitioner for children and young people with Cystic Fibrosis for over 20 years, providing specialist expertise, knowledge and advice to children and their families as well as to other professionals across health, education and social care. Janice was an advocate and support for patients and their carers and provided an important interface between hospital and community.
Being part of the patients’ lives for such a long time, meant that she watched children, who dealt with daily challenges, grow into young adults, and it she says it was an absolute pleasure to be able to support them in them with their onward journey to adult care.
Janice said: “I have had many years of experience in my previous role working with young people and preparing them and their families for moving into adult services. Although young people with complex health needs and their parents and carers have many professionals involved in their care, their transition process can be fragmented, with no one professional responsible for taking the lead and providing a co-ordinated and planned approach. It is vital that these young people and their families are supported at this often stressful stage in their lives so that they are fully informed and prepared about moving on to adult services. I am thrilled to be part of the WellChild network of specialist nurses and hopeful that the patient care I provide, coupled with influencing change, will make a massive difference to the patient and family transition experience and ultimately improve their quality of life.”
I am thrilled to be part of the WellChild network of specialist nurses and hopeful that the patient care I provide, coupled with influencing change, will make a massive difference to the patient and family transition experience and ultimately improve their quality of life.”
One child who benefits from Janice’s support is Joseph who has complex medical needs. His mother Rebecca said: “Before meeting Janice the thought of transitioning to adult services with Joseph was extremely daunting and overwhelming due to his very complex medical needs and having made very good relationships with his consultants over the years.
“During the transition process, Janice has made us feel a lot more reassured about the process, putting measures in place to make sure all Joseph’s medical needs are met through to adult services and the new consultants are aware of Joseph’s medical needs and also answering any questions we may have. She has been a great support. We are very grateful to her for all the work she has done during the transition.”
Another young person who has benefitted from Janice’s support is 19-year-old Jawad and his mother Safina. Jawad has complex medical needs, and he was under the care of many different specialities in Royal Manchester Children’s Hospital. Janice was introduced to Jawad and his family in March 2020 when he was 18, to support him and his mother with transition to adult services. Janice was there to listen to Jawad and Safina’s worries, providing information and empowering them. She helped plan for Jawad’s future bringing all the specialities together to ensure they were supporting Jawad’s needs.
Jawad said: “I really appreciated the help I was given through my transition nurse Janice because I was really scared to go to adult side. I have been known to the Manchester Children’s Hospital for 19 years and at times it felt like my second home, knowing all the doctors and nurses, and going to a new place that doesn’t know you and your needs was really worrying for me.
“Janice has helped me to arrange my medical passport with all my medical needs and support that I need. Janice supported me with my first appointment to adult side because I was worried about what to expect so it was nice to have someone that I knew and understood me.
“I still feel a lot more needs to be done with patients like myself with complex needs especially if they are not ready to go to adult side. Things could be done to help the transition, such as slowly transitioning while still getting service from the children’s side, doing visits in between and having friendly meetings with the adult team just to get to know them and for them to get to know their patients and to see the wards. Also, patients from the age of 16 to 20 should have their own wards that would really benefit them to transition to adult side.
“If Janice hadn’t supported me, I would have found transitioning really hard and I really appreciate her hard work. But I would say that we need more transition nurses that can support young adults with transition to adult sides especially the ones who have complex medical needs to make it an easier and happier transition for them.”
Safina added, “As a parent to Jawad and being part of his whole life, and all through his difficult times with his conditions, you become very worried about losing the attachment of people that have cared for your child over the years and who you have known and trusted. Your child going to a completely new start with doctors and nurses and gaining that trust again is a very big thing. So, getting the support and advice and reassurance from a transition nurse who knows what you feel and helps you understand what to expect is very important because, as a parent, you are so worried too since you have always been involved with your child’s care too.”
Janice’s manager, Dr Marie Marshall, Consultant Nurse for Transition, said: “Janice’s role as WellChild Transition Nurse for Complex Needs and Long-Term Ventilation has such a positive impact on the healthcare transition journey young people and their parent/carers at RMCH are involved in. Janice ensures that, in her delivery of care, she maintains a holistic approach throughout her involvement with young people and their parent/carers. Having a single professional involved in the co-ordination of their transition of care has meant that they are fully included and informed at every stage of their journey. Janice ensures she is available at the request of the young people to support the first appointment in the adult setting providing a further level of reassurance to the young people and their parent/carers. Janice really does put the ‘quality’ into the transition experience of young people and their parents/carers at RMCH.”
WellChild’s Children’s Nurse programme began in 2006, and its success has already resulted in the creation of 46 posts across England, Northern Ireland, Scotland and Wales. Further posts will be funded during this year.
Tara Parker, WellChild’s Director of Programmes, said: “We have worked to make sure that the essential service now provided by WellChild Children’s Nurses in regions of the UK have a long-reaching impact. Our target is for every seriously ill child or young person to have access to a WellChild Children’s Nurse, and thanks to the extraordinary generosity of the St. James’s Place Charitable Foundation, I am delighted that we have now been able to extend that support in Manchester.”