Posted on Jul 28, 2021
A: Angie Stewart
Q: Board Role designation
Q: Your link to the BBS
A: I have OI
Q: Have you ever been a Trustee for any other charity or similar? How many years have you been serving on the Board for BBS?
A: I have been a trustee for several local charities, all of which supported people who have a long-term condition to access and influence health and well-being projects in the North of England.
Many moons ago (when I was 16) I was an observer on our Trustee Board, on behalf of the Junior Brittle Bone Society. My Dad was the Vice Chairman, so I attended with him and was able to represent young members (although I couldn’t vote). I was hooked from that moment on…
Q: Was there a moment when you decided that you wanted to support the work of the Brittle Bone Society or perhaps you were co-opted?
A: My family became members when I was 3 years old. One of my earliest memories is being at the North East Branch meetings and there were people there just like me! My Mam knitted toys and Dad was recycled tin cans to raise funds for the BBS. It was our family thing! The conference has always been the high-light of our year!
Q: What do you enjoy most about serving on the Board?
A: I love being part of the growth of the organisation and making sure that it does what people affected by OI need it to do. We are a great team, with such a range of skills and expertise, which benefits the BBS hugely. I have personally learned so much during the time I have been a Trustee.
Q: What is the biggest challenge in your role?
A: Probably developing a greater awareness of how the different medical specialisms can support a person who has OI. This has grown so much since I was a child, when the only specialist I saw was an Orthopaedic Surgeon. The BBS staff team are fantastic at explaining every aspect of an OI clinic to the Trustees. This means we can make informed decisions, about influencing and prioritise according to what members tell us they would like the BBS to focus on.
Q: How important do you see the role of the Brittle Bone Society in helping to raise awareness around OI? And including participation around research or anything else you feel pertinent.
A: The role of the BBS is invaluable. We are certain the knowlegde we share about the condition is up to date and accurate. We are independent, from all pharmaceutical companies, enabling all information about treatments we share to be impartial. We offer the voice of people affected by OI to practitioners who are shaping services and creating treatments, which supports involvement and co-production.
Q: How would you like to see provisions for healthcare change in the future for people with rare bone conditions and specifically for OI?
A: I would like to see a greater knowledge and awareness of OI and its impact in every hospital in the UK. Especially within maternity, paediatrics, and A&E. Where a local hospital does not have the specialisms needed for OI, I would like them to have connections with the specialist centres, which would be available for children and adults across the UK.
I would also like to see a greater awareness of OI across social care, so that practitioners know it can be a fluctuating condition according to fractures and fatigue.
Q: Is there anything coming out of the Covid Pandemic that you feel will be learned positively to improve the quality of life for people with OI and their families?
A: The ability to have virtual clinics where appropriate, to avoid time off work and school, car parking and long journeys to local or national hospitals. However there needs to be opportunity to choose, whether a virtual or physical face to face appointment works best.
Q: Do you have any unusual hobbies or interests that you would like to tell us about?
A: I started to grow my own vegetables in my garden during 2020 and absolutely love it! I enjoy creating vegan meals with my home-grown vegetables. I have the cutest chihuahua called Annie McFluff who also enjoys eating the carrots from my garden.