Val Matthews volunteers with us as a member of our Information Advisory Panel and reviews our Teenager Guides. We spoke to Val about why she decided to volunteer with us, why she thinks our information is important and what The Biggest Ever Commitment To Primary Bone Cancer means to her.
How did you first become involved with the Bone Cancer Research Trust?
When my seventeen-year-old son, Martin died from Ewing sarcoma in 2007, I was stunned. But I was also full of questions; How could this have happened? Why had I never heard of Ewing sarcoma? Why had it taken so many GPs and a physiotherapist so long to recognise what was wrong with my son? Why had I not found information about Ewing sarcoma? Why was there so little information about it when he was diagnosed?
We then discovered the Bone Cancer Research Trust was holding its first conference just three months after Martin died. We went along. During the conference, I raised the issue of lack of awareness of primary bone cancers in children and young people. We continued to attend BCRT’s conferences and spoke out for the need for accurate information being available to everyone who needs to know it or access it in order to bring about a prompt diagnosis of bone cancer.
In 2010, BCRT was looking for new Trustees, so I applied. When the existing Trustees realised that I had a scientific degree and a long career history of producing and delivering reliable information and training materials in a specialist field within the Citizens Advice Service, they asked me to work with their Information Officer.
What has been your role at the charity?
I worked with BCRT to discuss what information should be produced for teenagers and parents, I was then involved in reviewing the information before it was distributed publicly. The plan from the outset was to produce information which would meet the Department of Health Information Standard, which is an accreditation which tells everyone that the information is reliable. Therefore, all the information was backed up by a bibliography listing the sources of the information.
In addition to the website information, a two-sided leaflet was produced, which I reviewed for teenagers and parents with very basic information about Ewing sarcoma and osteosarcoma.
BCRT went on to bring together representatives of teenage patients, parents & families and health professionals for a Teenage Advisory Panel workshop, which I helped facilitate. They recommended that information for teenagers should be in print and online and specific to teenagers and young patients.
Web pages are probably the most accessed source of information but a booklet is something that belongs to the patient, something to read at a quiet time e.g. in the middle of the night, something to hold, something that can be relied on and referred to at any time if they may not feel up to looking online.
As a result of these proposals, two booklets were produced for teenagers; one about Ewing sarcoma and one about osteosarcoma that go through the same review process.
Why do you think it’s important for BCRT to develop reliable information materials?
Information can help people to understand what is happening to them or to their loved ones and Information can be used to promote awareness among parents, young people, older adults, medical professionals, researchers and potential fundraisers and funding bodies. Reliable information enables all of these people to contribute to early diagnoses and to finding treatments that will cure bone cancers without damaging the vital organs of the patients.
What does The Biggest Ever Commitment To Primary Bone Cancer mean to you?
One of the reasons I volunteer with BCRT, particularly in the area of information is because the information needed when my son was diagnosed with Ewing sarcoma wasn't available. I believe if you are a person who has been diagnosed with any form of bone cancer, it doesn’t matter how rare your cancer is or how few other people have your cancer, your need for reliable information is just as great as that of someone who is diagnosed with the most common cancer in the world and BCRT’s strategy demonstrates their commitment to ensuring patients and their families have reliable, accurate and easy to understand information, when they need it.
The guides to osteosarcoma and Ewing sarcoma for teenagers and young adults can be found here