Julie Barnett is an Advanced Nurse Practitioner in Paediatric Oncology and Haematology at the Children’s Hospital for Wales where Latch is based. Julie has been a paediatric nurse for nearly 20 years and has worked in oncology/haematology for most of that time. She sees how patients and families benefit from ward staff working closely with Latch. Julie says that the charity has supported her professional development, helping her to implement ideas that improve patients’ lives on the ward.
“When families leave hospital to go home after their child has had cancer treatment, it can be really overwhelming. They want to go home. But, as the day approaches, doing so can feel absolutely terrifying. Parents need to think about infections, checking their child’s temperature, monitoring what they eat and drink, and managing all the medicines they need to take. I'm passionate that the talk from health professionals to prepare a family to leave the hospital for the first time should be done on more than one occasion, and that it should not be rushed.
This is why I worked with Latch to develop a resource that puts in place a process of things to happen prior to the first discharge home. They paid the costs to print an information booklet called Going Home, and also to translate it so it’s also available in Welsh. The booklet is given to every family who is treated at the oncology ward of the Children’s Hospital.
I developed the booklet in 2015 when I started observing what doctors and nurses did and said in their going home talk. Everyone did it slightly differently. Now, nurses and doctors use the booklet as a prompt, going through it in order so they cover everything, from giving the contact details of staff on the ward to preventing infections.
Our ward is so lucky to have such a close, totally unique relationship with Latch. They help families in different ways, depending on what they need. And they’ve supported my professional development and that of my colleagues too.
“My personal experiences have made me have more empathetic with the children and families I work with”
I have been at the Children’s Hospital working in oncology for over 16 years, doing various roles, including as a clinical nurse specialist. I am the oldest of four children and always wanted to work with children. I had a lot of operations as a child for various reasons. I had club foot, my adenoids removed and I was accident prone. I met a nurse I loved who sat down, played and talked to me, giving me her time. She was a big reason why I wanted to become a nurse.
When I was 30, I was diagnosed with breast cancer and went through surgery, chemotherapy, radiotherapy, targeted therapy and hormone therapy. I was already working in oncology then but it enabled me to appreciate the side effects of treatment that the children go through and how they might feel.
Woking alongside Latch Social Workers
I spend four days a week either on Rainbow Ward, Rocket Outpatients or in our day bed unit, where children come in for treatment. The best thing about what I do is making a small difference to someone and that might be simply listening to them. Perhaps I can make something a bit easier, or put them in touch with someone that can help, like Latch.
Rocket Outpatients is next to Latch’s office and if I am concerned about a patient, I might pop in there to see if a Latch Social Worker is about. The social workers see families in their home environment, meaning they get a truer sense of how they're managing life away from the hospital. Families trust Latch.
The social workers also go to a weekly multidisciplinary team meeting with the psychologist, community nurses, ward manager, key workers and consultants. Every week, we explore different ways that we can support families who are perhaps struggling and would benefit from some additional support. This meeting enables us to provide a holistic view of a family in oncology. It's not just treating the medical aspect of a child's diagnosis.
“Latch’s support is vital for families”
I might also ask Latch to talk to families about finances, which can be a massive stress for them when children are having treatment for a long time. Some of our families travel long geographical distances to get their treatment. Latch can also help support siblings if they are struggling at home too.
Having the LACTH accommodation just upstairs from our ward eases anxiety so much for families. Because their children’s immune systems are down, they often can’t mix with the general population. But having the accommodation upstairs means parents and carers are able to take a break and not be too far away from the ward.
One of the most challenging things about my role is when we run out of treatment options for children and knowing we are not going to be able to cure them. I have observed that our POONS (Paediatric Oncology Outreach Nurse Specialist) team and Latch are an excellent support to families that have lost a child, for as long as they are needed by the family.
Latch have funded my professional development
Now, 20% of my work is non-clinical, doing projects to try and improve things on the ward. For example, working on a guideline so that we get the correct anti-sickness drugs prescribed and given to children from the start.
Latch have paid for me to attend conferences, from which I’ve come back with ideas we are now putting into practice on the ward.
They funded myself and other nursing colleagues to attend the annual Children's Cancer and Leukaemia Group (CCLG) conference. Hospitals in the UK follow their guidance on how to treat children with cancer. For years, nurses from the oncology department were unable to attend this conference due to the cost. But for the last five years,Latch has funded our conference ticket and accommodation. Providing these opportunities to staff is essential to ensure we grow and develop services and improve patient care.
After attending a very interesting talk at the CCLG conference, myself and a consultant have been involved in securing funding from Latch for a machine on the ward to provide photobiomodulation therapy. This type of low-level light therapy is to help with the side effect of oral mucositis and aims to improve the healing process for children going through chemotherapy. The chemotherapy treatment we give affects the healthy cells in your mouth, causing ulcers.
I’ve come back from the conferences with different ideas about how we run clinics and how we can improve efficiency and patient care and experience. I attended a talk from doctors and physiotherapists about the importance of physical activity. Since then, I have discussed this with our ward physio and families about how we can implement ideas on the ward.
“Latch look at the bigger picture for families”
Latch also funded me to go to a conference in Edinburgh about fertility and cancer treatment. We are proud that we can provide a fertility preservation service in Wales for children who require cancer treatment that will affect their fertility. This is provided by working closely with Oxford University Hospitals NHS Foundation Trust and with the support of my colleague Nicola, a Paediatric Non-malignant Haematology/Stem Cell Transplant Clinical Nurse Specialist.
The information I gained at the conference helped me to ensure we remain aware of updated techniques. It also aided me in delivering a talk on protecting children's future fertility for nurses training in administering chemotherapy. I am passionate about this topic. I myself had an egg collection cycle before my own cancer treatment.
I love my job. I'm always searching out ways that might improve the service for children and families. Latch look at the bigger picture for families too. I hope Latch and Rainbow Ward in the Children’s Hospital can continue to have a good, close relationship. It’s amazing that we've got them as a resource for families.”
