Case studies

"Feeling you have helped and supported the young person, their family through their journey of diagnosis, treatment and difficult times is lovely. It is why I come into work each day."

I lead the nursing service in the Great North Children Hospital for children and young people (CYP) with rheumatological conditions across the whole of the northern region.

My mother was a paediatric nurse and my great aunt a matron so I guess you could say nursing is in my blood. 

I always knew I wanted to work with children and I trained in Liverpool based at Alder Hey. Since then I have worked in a variety of roles including oncology, research, outpatients, surgery and neonates. 

I moved to the North East after meeting my husband on a blind date!

How did you end up in paediatric rheumatology?

Some 20 years ago all children with conditions such as arthritis, lupus, vasculitis were cared for by adult rheumatologists. Eventually, it was agreed nationally that all paediatric patients should be under the care of paediatric rheumatology teams. 

I knew nothing about this group of patients but as a sister of children’s outpatients was asked for some advice one day by Professor Helen Foster in clinic. She told me about her drive to set up this service and I could feel her passion. I knew I wanted to be part of it. I was excited at the thought of setting up a new service and was able to draw upon my previous experiences as a senior paediatric nurse.

I was very proud to be appointed as one of the first Paediatric Rheumatology Clinical Nurse Specialists in the UK. At that time there were no protocols, guidelines, treatment pathways, information or advice to support our patients. 

I linked with other teams and we set up a national nurses group, which I chaired for 3 years. This group worked tirelessly to address the gap in care for children and young people with rheumatologically conditions. 

Our own team expanded at the Great North Children's Hospital and my role changed from clinical nurse specialist to lead nurse. 

Tell us about your role

This role includes education, awareness and promotion of the care for CYP regionally, nationally and internationally:

• I have been part of the Royal College of Nursing rheumatology forum developing nursing competencies. 
• I have taught and spoken at international conferences raising awareness that children and young people get arthritis too.
• Working with the medical team led by Professor Foster we have developed tools to help professionals to examine children’s joints effectively – pGALS which helps nurses and doctors screen for joint issues. This is now part of the medical student curriculum. 
• I have worked with pharmaceutical companies to improve treatments and make them more suitable for CYP.

What are your future aspirations?

I have retired and returned and I am due to leave my role in 2023

What do you love about your job?

Working in this role you really get to know families. Meeting a new family and supporting them through diagnosis and treatment is so important. Many of our patients require complex medication to be given at home.

 Having worked within the team for over 20 years I have been very privileged to start the journey with families and watch the child grow and develop. We offer a transitional care service where we support children and young people to take over some of their care so when they move to adult care they have the skills and knowledge they need. 

I know many young people who I first met as small children move onto adult care and still keep in touch. I have one patient who has recently got in touch to tell me about her new baby. 

Feeling you have helped and supported the young person, their family through their journey of diagnosis, treatment and difficult times is lovely. It is why I come into work each day.

Another aspect I love is sharing my knowledge and expertise with other professionals. I have presented at international areas and closer to home I enjoy coaching and supporting junior colleagues. 

I have a role within the Great North Children's Hospital supporting and raising the profile of all the clinical nurse specialists. As a senior nurse with a clinical role many colleagues come for advice and support. I feel privileged to be able to offer this to my colleagues.

What has been your proudest moment so far?

To see a service start from nothing to where it is today is amazing. I can still remember my first day in the job and I didn’t even have a base and sat in the library. To be part of the development of the service locally, nationally and internationally is an amazing feeling. I have met some inspirational colleagues along the way. 

Working together we developed on online educational resource for professionals. Many of the images are from GNCH and of my families. www.pmmonline.org has become an international success with a section written for nurses by nurses.

Any tips for finding a job that you love?

I would recommend using every opportunity to explore different roles. Try to be brave and move about rather than qualifying and staying on the same ward. By moving round you will find what you like and what you do not. 

There are so many different opportunities and different roles in nursing and all offer different experiences. 

If there is an opportunity to apply for a secondment this is often a great way to find out about different roles.