February 2025
What is your current role?
Liz: I am a paediatric cardiac clinical nurse specialist (CNS) and I have been in this role for the past 14 years. I first started working at Royal Brompton Hospital on Rose ward 18 years ago. Ruth and I worked together at Royal Brompton Hospital and were part of the cardiac nurse specialist team. We are looking forward to working together even more in the future.
Ruth: I began my career in paediatric cardiology in 2005 at Guy’s Hospital. I was part of the exciting move to the brand-new Evelina London Children’s Hospital in the October of that year.
I've been working as a paediatric cardiac clinical nurse specialist for the past 15 years. I first did this role at Royal Brompton Hospital in 2010, and worked there for a few years. I returned to Evelina London Children's Hospital in 2013.
Guy's and St Thomas' children’s cardio-respiratory and intensive care services came together under the leadership of one management team in April 2022 after the merger of Guy's and St Thomas' NHS Foundation Trust and Royal Brompton and Harefield NHS Foundation Trust the previous year.
This means our children's cardiac service cares for children and young people with heart conditions at Royal Brompton Hospital and Evelina London Children's Hospital, and we sometimes need to talk about patients we share. We also attend cardiac conferences together and meet up with our children in between!
Tell us about a typical day
We both attend clinics in our hospitals, as well as network outreach clinics across south east England.
Network outreach clinics are held in our patients' local hospitals, so they do not have to travel all the way to us in central London. We attend these with a cardiologist and sometimes a nurse from the local hospital.
We visit schools and we meet patients and families on the ward who are ready to go home to give them advice and answer their questions.
What's the best thing about your job?
Liz: It is such a pleasure supporting families and patients and getting to know them throughout their journey from diagnosis up until when they transition to the adult congenital heart team. It is rewarding to know that even a little time spent with families can make a big difference to their lives. We are learning every day which keeps work challenging and exciting and there is never a day which is the same.
I am fortunate to work with amazing colleagues who are always willing to help and support each other. This makes coming to work every day fun.
Ruth: It is very rewarding to see babies we cared for on the ward many years ago and watch them grow to be young adults and transition to adult congenital heart disease care, which makes me feel a bit old nowadays!
It very rewarding and fulfilling to be in a caring and supportive role for our patients and their families. Paediatric cardiology is also very interesting and always evolving and improving medically and technologically. It's difficult to have a mundane day! I learn every day in my role, which keeps it challenging and exciting too.
What is your proudest moment?
Liz: I completed an advanced clinical assessment course in 2023 while balancing family and work life, maintaining a full caseload. I am able to use the knowledge and skills I have learned in everyday practice which has made me a better CNS.
When we meet new patients, their families can be understandably upset and overwhelmed about their child's diagnosis. I am passionate about educating and empowering them to confidently look after their child at home and prepare them for investigations and admissions. It is a privilege to support them through their journey.
I love being able to support such lovely patients and their families and this makes me feel proud every day to be a paediatric cardiac clinical nurse specialist.
Ruth: One moment where I was proud of myself was when I presented to a packed lecture theatre at a 'congenital heart week' conference run by the education teams at Royal Brompton Hospital, Evelina London Children's Hospital and Great Ormond Street Hospital. I'm not an outgoing natural speaker and would much prefer one to one counselling with families but it was about our home monitoring programme that I'm passionate about and it was very well received.
What are you working on at the moment?
Liz: I help to manage and coordinate the international normalised ratio (INR) machine training for our patients and their families. The INR machine measures the time taken for someone's blood to clot. This is necessary for children and young people that will be on warfarin (a medicine that prevents blood clots) for a long time that need frequent blood tests. This allows children and young people to have INR testing at home, so they don't have to miss school or work.
Ruth: I help care for our patients on our home monitoring programme, which has been designed to support our most vulnerable babies born with only one ventricle working in their heart instead of the usual two. We ask parents and carers to use a saturation monitor to measure the oxygen in their baby's blood and weigh them at home. They record the observations in a daily diary, which we check weekly. We have appointments with them every 2 weeks, or more often if we think they need it.
Over the past 10 years this approach has allowed us to provide life-saving care to patients when they need it and given us insight into the complex nature of their heart condition and the impact it has on them and their families. Currently the daily diary is on paper but we hope parents and carers will be able to record their results electronically soon.
What's next for your team?
It's important that the cardiac teams across our hospitals work together to provide the best possible care we can to babies, children and young people, wherever we see them. Over the last year or so, our cardiac teams have been doing a lot of work to integrate.
We all took part in focus groups 'playing' with Lego to break down barriers and to facilitate getting to know each other and how any differences could be used together as advantages. This helped us to collaborate on ideas for one super cardiac CNS team!
Once the CNS team is fully integrated, in the near future, there will be cross cover of in-house clinics and network clinics. We will pool our expertise to create a brilliant one stop resource hub! This also includes sharing specialist support for our patients seen by sub specialties such as electrophysiology and inherited cardiovascular diseases. This can only be positive for the children and families we care for and provide opportunities for development for us as nurses.
Thank you to the children and young people who have so brilliantly illustrated our blog pages.