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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 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.