We spoke to Jane Forsythe, Sarcoma Clinical Nurse Specialist at The Royal Orthopaedic Hospital, Birmingham. Jane volunteered her time to review our new children’s storybook Abbie Has Osteosarcoma.
Can you tell us about yourself and your role?
I’m a Sarcoma Clinical Nurse Specialist at The Royal Orthopaedic Hospital in Birmingham; I support patients 0-24 years old and their families going through a diagnosis of bone and soft tissue cancer. I’ve been working within the NHS Trust for 32 years and I’ve been a Clinical Nurse Specialist for 12 years.
Patients are referred to us every day from all over the country. I attend a daily Multidisciplinary Team meeting and we discuss patients that have been referred to us and who I will be supporting. They have my support throughout their journey and this includes; attending clinic, having a biopsy, undergoing surgery and their treatment.
Before they even come onto the ward, I contact them to introduce myself, answer any questions they may have, explain the whole process to them and give them practical information. This includes helping them coordinate their journey before they arrive. It’s a massive supportive role from the very beginning. The patients and their families really appreciate this support at such a difficult time.
Why did you decide to get involved with reviewing Abbie Has Osteosarcoma?
I’ve been doing my role for a long time and I have many years’ experience of looking after children with osteosarcoma and I wanted to share my expertise in this storybook. There is also no specific child friendly osteosarcoma storybook I can give to children and their families, so I wanted to be involved with the development of this essential new resource.
Why do you think it is important for children and their families to have access to Abbie Has Osteosarcoma?
Sometimes people go online for information and it’s not always accurate, but with Abbie Has Osteosarcoma you’ve got the right information at hand to give to children and their parents. I can tell them that I recommend it, I endorse it and the information is correct.
Sometimes parents worry and struggle with how to tell children about what they are going through. What words do I use? How deep do I go? What do I say not to frighten them? I always advocate you should be truthful with your child and sometimes that is very difficult for parents. Having Abbie Has Osteosarcoma for guidance helps parents explain to their child what is happening in easier terms.
How do you think Abbie Has Osteosarcoma will help children and young people through the diagnosis and treatment journey?
A lot of young children like books and it will give the family the opportunity to sit down together and read the story and look at the pictures. Abbie Has Osteosarcoma explains everything very simply and it will help children generate questions that I can answer.
It’s a book they can keep and go back to it whenever they want to. Abbie Has Osteosarcoma will support them from the start of their journey and throughout, they will be able to relate to it and will get a lot of benefit from the book.
