Brittle Bone Society (BBS) Westminster Parliament reception event (OI Awareness)
13th June 2023 at Westminster, House of Commons, London 2 to 4 pm
The BBS secured sponsorship from the local constituency MP Chris Law to support this event at the Parliament. The initial project commenced 1 year ago; seeking greater awareness of OI and calling for the month of May to be recognized, generally supporting the needs of the OI community. We encouraged our members to write to their elected representatives to bring their attention to the OI community. At this planned event we presented the results of our patient charter highlighting the shortfalls in patient care. We are also grateful that Mr Law raised an early day motion in parliament to call for greater awareness and a month of focus on OI.
Please contact your MP about the event
We asked members to get in touch with their elected representatives and make them aware of the event and encourage them to attend. We were pleased when Rt Hon Stewart Hosie MP agreed to sponsor the event, once Mr Law had to step back due to other committments.
OI army of ambassadors
All the individuals and their close relatives involved in ‘the BBS year long campaign’ and who feature on our literature about it were invited to attend. Shani Dhanda, Monique Jarrett, Yvonne Grant, Eva Kelly and her mum Silean, Lucy MacConnell and her mum Dr. Niamh MacConnell, Kieran Dube and mum Rachel Dube, Kat Watkins, Max Edney and dad Steve Edney, Richard Toner, Amna Hammad. We also welcomed former Trustee Jacky Boyd and daughter Alice who manged to attend from republic of Ireland – standing in for young Lucy MacConnell who wasnt able to make the date.
Other OI ambassadors who helped us in other campaigns and have given talks and presentations representing the Charity were invited.There was good representation from the Charity’s Trustee board, BBS medical advisory board and scientific advisory board representation. Key healthcare professionals either involved or interested in our work and other NHS personnel and sponsors. Various funders were also invited to attend, such as friends from the wider rare bone disease network. E.g. HPP, XLH, Fibrous Dysplasia. The aim was to raise awareness of OI and foster greater support for care in rare bone diseases.
Speakers
We had an impressive line up of speakers our supporting host the Rt. Hon. Stewart Hosie MP, we had apologies from The Lord Kevin Shinkwin who had travel issues, CEO Patricia Osborne, Vice Chairman and Trustee Mr John Phillips, Professor Richard Keen – Chairman of our Scientific Advisory Board, Dr Judith Bubbear (standing in for Chair of our MAB, Assoc. Prof Kassim Javaid) and Steve Edney (dad to Max, advocate of OI and champion fundraiser for the BBS). Trustee Yvonne Grant recited a poem written by her late mother and trustee Thines Ganeshamoorthy closed the days event with a vote of thanks.
Agenda
Welcome address from MP about the charity’s standing in the community and hopes to raise more awareness (with input about the UK Rare Disease Plan).
We addressed our important work to develop care pathways referencing to any network care work BBS have contributed to. We referenced published papers we have achieved (eg. The Impact of Covid on the OI Community) and provided an update on new treatments/exciting prospects including research in OI care. There was also a talk from Steve Edney on his, and his family’s own OI Journey.
Westminster Parliament Reception Event: Press Release
Brittle Bone Society attended the Houses of Parliament in London 13th of June bringing their year long OI CAN campaign to Westminster. The event was sponsored by the Rt Hon Stewart Hosie MP, constituency MP for Dundee East and SNP Treasury spokesperson. The OI community gathered on the buildings’ Terrace Pavillion – on what was one of the sunniest days of the year, alongside the charity’s Trustees, staff and invited VIP guests from OI communities in Norway and the USA along with senior NHS Healthcare professionals for an afternoon of engaging talks and updates.
The campaign which was launched one year ago was calling for more awareness about OI during the month of May. The days’ event was to acknowledge those who signed the EDM (early day motion) and to signal the latest position on the campaign and update on vital work the charity are undertaking to formalise care pathways for adults with OI. They also took the opportunity to announce exciting developments with a new NHS RDCN (Rare disease care network) involving over 22 hospitals UK wide that will foster better understanding and exchange of knowledge with healthcare professionals around this rare condition affecting approximately 5,000 people in the UK today.
Charity CEO Patricia Osborne provided an outline of the Charity’s commitment to capture views and how this resulted in their People’s Charter and how this went on to shape the Charity’s next steps to achieve improved care. Vice Chairman John Phillips went on to host the day’s event introducing an impressive line up of contributors. Trustee Thines Ganeshamoorthy closed the days event with a vote of thanks.
Key attendees who fronted the OI CAN campaign from Scotland, England, Wales, Northern Ireland & the Republic of Ireland, lent their voice to the day representing the widest possible reach of the OI community and who featured on the Charity’s promotional literature. The impressive line up included the leading disability advocate and campaigner, Shani Dhanda, alongside Kieran Dube, Kat Watkins, Yvonne Grant, Monique Jarret, Max Edney and Amna Hammad-Saleem. Representing Ireland was Alice Boyd deputising for Lucy MacConnell.
The audience heard from prominent speakers in the NHS including Chairman of the Charity’s Scientific Advisory Board – Professor Richard Keen of the RNOH Hospital, London who discussed groundbreaking research currently happening in Osteogenesis Imperfecta, and his colleague Dr Judith Bubbear who shared the outline of the soon to be launched new Rare Disease Care Network (RDCN). The Charity will formally host this launch in central London in November 2023.
Other contributors included champion fundraiser for the BBS Mr Steve Edney, an exceptional ambassador for the BBS, who shared his experiences as a parent of a child with OI and his journey with BBS, from raising awareness, to fundraising and how he and his wife Leanne are focussed on helping the charity achieve better care for adults with OI. It’s worth highlighting that just days after this event, Steve Edney was awarded a BEM in the Kings Honours List, for his incredible achievements raising awareness and fundraising for the BBS Charity.
The concluding part of the days event involved poetry recitals from Trustee Yvonne Grant (written by the late Dr Margaret Grant MBE) written in 1974 and Max Edney with an offering penned some 50 years later . . . (Through the Eyes of a Child by Leanne Edney). Both poems were incredibly insightful and captivating.
Sign the BBS Charter
There is still time to sign the #OICANMayCampaign charter! You can sign the charter here.
