Adult Rare Bone Service
The Brittle Bone Society, along with the Medical Advisory Board are working tirelessly to collect strong evidence for NHS England demonstrating the high unmet need that exists for an adult OI service. As part of this, we are also looking at what services should be offered for adults (people aged 16 years and over) with all types of OI, as well as developing Clinical Care Guidelines.
Living with a long-term, multi-disciplinary condition, people with OI often feel left to manage on their own, without support, follow-ups and regular monitoring. The symptoms are being treated but not the condition.
We will therefore need your continued support in getting involved in further consultation events, completing surveys and assisting us to gather relevant information to form a suitable service for the needs of the OI community.
March 2020
Adult Services Survey of how well the NHS is serving your needs for Osteogenesis Imperfecta
We want to send a big thank you to everyone who helped us with this critical survey.
We have had over 200 responses and the survey is now closed. The Medical Advisory Board, which includes people living with OI and leading NHS healthcare professionals, have reviewed the preliminary findings which demonstrate significant care gaps around mental well-being and fatigue. We are updating the BBS factsheets to cover some of these areas, e.g. ‘Best Contraception for your Bones’ and one for ‘Hypermobility’.
Over the next year we will use the information from the survey to recommend (i) a pathway for the care that people with OI should expect to receive from the NHS, GPs, community services, hospitals and specialist centres and (ii) steps that a person with OI can take independently. This is an exciting next step for people with OI, and we may come back to you for your further help.
We will publish the summary of the survey findings in the next few months.
If you would like to be considered to also work more closely in any aspect of our charity’s research and other projects, please contact our Support Development Officer, Coreen Kelday, at coreen@brittlebone.org.
Best wishes,
Medical Advisory Board Chairman, Dr Kassim Javaid & Brittle Bone Society Chairman, Elaine Healey
June 2018
We held a Parliamentary Reception at Westminster which highlighted excellent provision for paediatric care of OI. We used this platform of awarding excellence to draw attention to the severe lack of adult OI services throughout the UK. You can read more about this event here.
December 2016
The BBS held our first consultation meeting with OI members on the Adult OI Forum who are supporting our call for a specialised adult OI service to be created in England. There was a good mixture of ages represented from England, Scotland and Wales representing all sections of the OI family. Dr Richard Keen, from the Royal National Orthopaedic Hospital, is Chairman of the Adult OI Forum.
December 2016
The BBS held our first consultation meeting with OI members on the Adult OI Forum who are supporting our call for a specialised adult OI service to be created in England. There was a good mixture of ages represented from England, Scotland and Wales representing all sections of the OI family. Dr Richard Keen, from the Royal National Orthopaedic Hospital, is Chairman of the Adult OI Forum.
Throughout the survey, members consistently told us there is a lack of knowledge around OI within the wider healthcare/medical professions, especially at GP level and within Accident and Emergency departments where people with OI regularly attend.
This led to us forming an Adult Forum and doing further Consultation work.
To see the results of this survey, please click here.