We spoke to Hannah Ellis, Sarcoma Clinical Nurse Specialist at The Royal National Orthopaedic Hospital, Stanmore. Hannah volunteers with us to review our information resources, including our new children’s resource ‘Harry Has An Operation: A Guide For Children With Bone Sarcoma’.
Can you tell us a bit more about yourself and what a typical day looks like for you?
I work as a paediatric and adolescent sarcoma clinical nurse specialist, so I work with children, teenagers, and their families throughout the diagnosis and treatment of their bone cancer. One of the things I love about my job is that no two days are ever the same, but a typical day will usually involve spending time with families either on the ward or in clinic. I often meet families when they are admitted to hospital for investigations to diagnose their tumour. This is a scary time and families really appreciate someone to talk through what’s happening and what might happen next. Many parents will call for advice or support so I spend time speaking to families on the phone, addressing concerns or queries. I also spend time in meetings with other professionals, discussing patients and their upcoming treatments and care.
What made you want to get involved in reviewing our first children's information resource and how did you help out?
I have been using information booklets produced by BCRT for years now and have always found them to be an excellent source of information and support for families. These tumours are rare, so reliable information specific to these tumour types can be difficult to find, which is why the resources produced by BCRT are so valuable. When BCRT approached me to be involved in reviewing this new booklet I was thrilled to be involved as I think there was a real gap in the market for this. I was able to look at the draft copies and provide feedback to ensure the content was accurate and included all the important points.
Why do you think it's important for patients, and their families, to have access to reliable information such as ‘Harry Has An Operation’?
Having surgery for their bone tumour is a huge part of treatment and it’s really important that children, and their parents, feel prepared for this. Having any operation is always a scary time, so knowing what to expect and having resources available to help children process this information is really important. Now this new booklet has been completed I have been able to share copies with the play specialists who are able to use the booklets when talking to children about their upcoming operation. So far these have been well received and have proved a valuable tool in the preparation process.