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Adult Clinics

Adult Clinics

In 2016, we carried out a survey to seek the views of our members in relation to their experiences of the current NHS provision for adult OI services. We received over 100 responses.

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.

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 and not the condition.

We, 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 Clinical Care Guidelines.

This will be a long process, but we ask members to join us on this important journey. We will need your help by 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.


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. This group will continue to work with us in evaluating the data needed for this project and we hope they can deliver a workshop at our next conference and AGM.

Dr Richard Keen, from the Royal National Orthopaedic Hospital, is Chairman of the Adult OI Forum. Professor Faisal Ahmed from the Royal Hospital of Sick Children in Glasgow and Trustee of the BBS also attended this meeting. We had apologies from allied healthcare professionals who had travel issues and unfortunately, our friends from Northern Ireland and the Republic of Ireland weren’t able to make this first meeting.

We will work tirelessly to collect strong evidence for NHS England demonstrating the high unmet need that exists for an adult OI service. We will also be looking at formulating Clinical Care Guidelines. This will be a long process, but we ask members to join us on this important journey. We will need your help by 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 adult OI community.


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.