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BBS Response and Resources

Our coronavirus response

During the pandemic our team quickly adapted to working in new and different ways to address the needs of the OI community. We continue to work tirelessly to provide a frontline response to the crisis by:

Reducing pressure on the NHS by:
Answering those queries we are able to  address and providing a steer and information to individuals with OI, therefore, decreasing the need for them to have to contact their healthcare professionals. Enquiries to the BBS quadrupled in the first month of the 2020 pandemic.

Information:
Working closely with NHS OI healthcare professional experts and keeping up to date with the latest Government guidance to keep patients well informed by providing the most up-to-date information on our various social media channels.

We delivered webinars  and a health and wellbeing event in collaboration with NHS healthcare professionals to reach as many individuals as possible and to address common concerns. This included not only healthcare professionals but individuals with their own experiences of covid. These can be viewed here.

We held the 2020 and 2021 Family Conferences online.

We have been resolute in increasing our Digital presence to bring individuals and families together as a community to reduce isolation by holding fun virtual events from pub quizzes, sing a long session, to virtual chat rooms.

Resources
We produced useful resources to help alleviate anxiety see our Mind Matters page.

We developed a series of Pilates videos, to address pain issues many were experiencing as well as the lack of mobility due to being housebound.

We produced a list of useful resources for keeping the kids entertained and educated during lockdown, we held weekly Ollie the Owl give away competitions and we sent out 106 gift boxes for Christmas 2020.

Surveys and Consultations
We developed an important series of surveys to hear experiences from the community in relation to accessing routine healthcare, remote consultations, emergency care and to find out the perceived risk of Covid-19 and the effects the pandemic had on mental health and lifestyle. Results can be found here.

We have used these results to feed into numerous consultations in relation to the pandemic. It is our intention to have this data published and we have been working with the Office for Rare Conditions in Glasgow under the guidance of Professor Faisal Ahmed.

As the situation evolves and we prepare for the new normal, we will adapt our support to meet the changing needs of the OI community. We will do this in full consultation with our wider community and supporters of the BBS.