We interviewed Milli Lipshaw – Paediatric and Adolescent Sarcoma Clinical Nurse specialist, from Royal National Orthopaedic Hospital about our information resources.
1. Can you please tell us a bit about yourself and your role?
My name is Milli Lipshaw and I work with my colleague Hannah Ellis as part of the London Sarcoma service. We care for children and adolescents aged 0-19 years old. We meet families at the start of their cancer journey and support families by answering any queries or concerns they have. We breakdown information so it is easily understood by families. We also do a lot of work in the background, ensuring information is communicated between the Orthopaedic team and the treating Oncologist/Radiologist and community teams and that families are kept up-to-date. We present at conferences and teach staff how to care for our patients to ensure we maintain high standards of care and keep up to date with research outcomes.
Another part of our role is to raise awareness of Sarcomas and the help and support available to benefit families going through this journey. We have information hub’s in both our outpatient departments and on our children’s ward at the Royal National Orthopaedic Hospital.
It is a very privileged position that we are in. We form a bond with our families and see them throughout their treatment and follow up. I find it very rewarding to make a families cancer journey a little bit smoother. It is a very varied role and that is what keeps the job interesting. No two days are the same!
2. From your experience as a paediatric and adolescent sarcoma clinical nurse specialist why do you think our children’s resources are so important?
The bone cancer research trust resources are amazing; they not only help the patient and parents but also siblings and the extended family in understanding a rare and scary situation. ‘Harry has an operation’ and ‘Abbie has osteosarcoma’ are fantastic resources which explain in simple terms and pictures to help families understand the processes and treatment plan ahead. They are written like story books, which helps to engage children and allows them to ask questions.
3. How do you think our children’s resources support a child and their family going through a diagnosis?
When people have a question these days, they tend to go straight to the internet to find out the answer. We all know how easy it is to end up “down a rabbit hole” scrolling through internet sites and finding information that may not be helpful or relevant. The Bone Cancer Research Trust booklets are extremely helpful as they have clear and concise information about the specific type of cancer (sarcomas) and what to expect. They allow families to read information that they can trust is factually correct. They are worded in nice simple terminology and include a glossary of medical words that you might not understand yet. We always advise our families to stick to trusted websites rather than typing search terms into a web browser, but often the information in the Bone Cancer Research Trust Sarcoma guides is enough for families. I also recommend the ‘Step-by-step guide for patients’ as it is useful to jot down your treatment details and contacts in one place.
4. How do our resources support you in your role?
We understand that a cancer diagnosis is a very difficult thing to hear. Most of the time people hear the word ‘cancer’ and everything else is a blur. It is usual for families to not have any memory about conversations we have had in clinic settings. Part of our role is to ensure the family understand what is going on and guide them to the next steps. The Bone Cancer Research Trust booklets are really helpful as they contain information we will have discussed with families. We can highlight sections for them to refer back to.
5. Is there anything you would like to say to our supporters who are raising funds so that we can create information resources for patients and their families?
Raising funds also allows for new research which can help our future patients and of course the creation and distribution of resources from Bone Cancer Research Trust.
On behalf of our team at the London Sarcoma Service, well done and thank you!