June 2024
What is your current role?
We're clinical nurse specialists for children and young people with cystic fibrosis based at Royal Brompton Hospital. We're part of a team of 5 nurses with various responsibilities but with the main aim of supporting children with cystic fibrosis and their families. We often meet families through the newborn screening programme when the baby is just 3 weeks old and look after them until they transition to adult care when they’re between 16 and 17 years old. We provide patient and clinical support and education for families, nurseries and schools. We're a resource of expert knowledge for ward nurses, GPs, primary and secondary care services and social care.
We provide home visits, school visits, telephone support, support during appointments and when children and young people need to stay in hospital.
We work closely with a large team including doctors, physiotherapists, dietitians, psychologists, play specialists and pharmacists. It is truly a great team to work in and an example of a multi professional team working at its best.
We're always striving to improve the quality of care for children and young people across our service, with input from them and their families.
We make every effort to involve our families as much as possible. We hold regular parent evenings and write a yearly newsletter which keeps everyone up to date with the latest news about our research, brilliant team, treatments for cystic fibrosis and more.
Tell us about a typical day
Our days can be varied depending on what our patients need. We can be visiting a family to inform them that their baby might have cystic fibrosis after a heel prick test and what the next steps are, or helping a young person on the ward who has come in for intravenous antibiotics.
We could also be attending national meetings or helping to advance practice and guidelines. For example, Katie was part of a team from across the UK who updated The Cystic Fibrosis Trust's guidelines for managing cystic fibrosis related diabetes.
We spend a lot of time on the phone! We're often the first port of call for parents who need advice about their child.
What's the best thing about your job?
We're privileged to get to know not only children and young people with cystic fibrosis but also their whole family. We're often the one consistent member of the team that families see, which means they do not have to retell their history each time. We're able to get to know patients and families as individuals and identify and advocate for their needs. Working within a multi professional team where everybody's voice is heard and respected to ensure the best possible care for children and young people and their families is why so many of the team have worked here for over 20 years.
What is your proudest moment?
Jackie was awarded a Barnardo's Childhood Champions award for her dedication and work with children with cystic fibrosis. She was nominated by families she has looked after at Royal Brompton Hospital.
We set up and have run the newborn screening programme at Royal Brompton Hospital since it was introduced 16 years ago. Despite the fact that a diagnosis of cystic fibrosis is a devastating time for parents and carers of newborn babies, we were told that they felt we handled the process with care and compassion and felt well supported by our team from the beginning.
What are you working on at the moment?
Jackie is leading a project to improve the transition of young people from children's to adult services. She is looking at making sure the process is what our patients want and need. She is planning on holding a focus group with parents and carers and young people over the age of 12 to hear their views.
Katie is leading a project to improve care for children and young people with cystic fibrosis related diabetes, having been a member of the national cystic fibrosis related diabetes working committee for over 5 years. She is working with a team to organise and run a national study day to improve and streamline cystic fibrosis related diabetes care across the country. She also aims to make sure we're offering the best care for the growing number of children and young people with cystic fibrosis related diabetes.
Why is it important to raise awareness of cystic fibrosis?
Cystic fibrosis care has changed dramatically over the past decade. However, it remains a demanding and burdensome condition to manage for children and young people and their families. Families continue to work very hard to keep their children as well as possible and it is important that this is recognised. Although new treatments have changed the course of the condition for many, there remains a number of children who are unable to access these medicines and we must make sure awareness and research continues for all children with cystic fibrosis.
Thank you to the children and young people who have so brilliantly illustrated our blog pages.