The Paediatric Osteogenesis Imperfecta National Team (POINT) was formed with an aim to provide a forum for clinicians in the UK with an interest in Osteogenesis Imperfecta (OI) to meet and share information and ideas with each other.
POINT is a working group of specialist Nurses, Occupational Therapists, Physiotherapists, Psychologists and Social Workers. The group has grown from a membership of five in 2000 to over 30 in the present day, with meetings held at venues across the UK.
Membership includes staff from the four nationally commissioned, Highly Specialised Services (HSS) and other regional centres in the UK with a specialist interest in paediatric OI. The four HSS centres are:
- Birmingham Children’s Hospital
- Bristol Children’s Hospital
- Great Ormond Street Hospital for Children, London
- Sheffield Children’s Hospital
POINT are keen to involve, innovate and share with centres outside the 4 national HSS, who are all welcome to attend the POINT meetings.
POINT meets on a 6 monthly basis and these meetings are an opportunity for healthcare professionals to share learning and provide peer support, working across disciplines to build cross speciality understanding and skills, developing topical OI information leaflets for use by patients and professional groups, discussing outcome measures, research and case studies.
Meetings enable clinicians within a rare disease group to form collaborative working relationships across the UK. POINT works closely with medical and surgical clinicians to provide holistic care for children with complex, atypical and severe forms of OI, as well as children with mild and moderate presentations.
Our Support Development Officer is invited to meetings to represent the society and its members. If anyone wishes to contact our SDO with any suggestions or comments you would like to be taken to the POINT team, please get in touch.
POINT and the Brittle Bone Society continue to work closely for the benefit of children and families with OI. Recent collaborative work has seen the development of our factsheets, kids hospital packs and Patient Day events. Members of POINT also assist with the annual conference, Cool Bones, and VOICE. POINT also provide a valuable link for the BBS to contact with relevant queries and equipment applications from patients, families, and schools.