28 February 2019
Rare Disease Day: Meet the OI team
Today is Rare Disease Day (28
February) with people around the world joining together to raise
awareness of rare diseases. As part of this year's events we are
highlighting the work of one of the teams here at UH
Bristol.
The osteogenesis imperfecta (OI) team at the Bristol Royal
Hospital for Children, is just one of four highly specialised
paediatric services in England. OI - more commonly known as brittle
bone disease - affects around 5,000 individuals living in the UK.
Characterised by fragile bones that break easily, presenting in
many different ways and a range of severity, the condition requires
medical intervention and patient support from newborn babies
through to adulthood.
Dr Christine Burren (pictured, second from left with the OI
team), consultant paediatric endocrinologist and service lead,
said: "Bristol has been delivering treatment and surgery to
affected patients since the 1980s. In 2012, NHS England selected
our services as one of four highly specialised childhood services
in the country to provide more intensive support to patients;
including occupational therapy, psychologists, social workers,
physiotherapy and specialised nurse input. "The team consists of 14
colleagues who deliver a multidisciplinary approach to patient
care, so that all aspects of the condition, its physical and
psychological effects, are managed. As a result, almost 100
patients from across the South West region, and a small cohort from
Wales, are under our care."
Last summer, colleagues from OI services across the country, and
affected individuals and their families, were welcomed to a
Parliamentary Reception at Westminster. In celebration of the
Brittle Bone Society's 50th anniversary, the event continued to
raise awareness of the condition and the requirement for improved
multidisciplinary healthcare for adult services that meet the same
standard of treatment and care available to paediatric patients. In
a letter from Prime Minister Theresa May, clinicians delivering OI
services were thanked for their tireless contributions tackling the
condition in order to make a real difference and heartfelt
congratulations to those recognised through the Brittle Bone
Society Excellence Awards, including Bristol Royal Hospital for
Children.
"I am extremely proud of the service we are able to deliver to
our patients and their families, which wouldn't be possible without
the whole team who input their expertise", says Dr Burren.
"In addition to the recognition we received last summer, we are
also an accredited member of the European Reference Network for
Rare Bone Disease, and often collaborate with international
colleagues. "We strive to make improvements to ensure patients
receive the best possible care, and continue to work on a number of
initiatives to ensure patient needs are catered for.
For more information about the team click here.
You can find out more about Rare Disease Day here.
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