What do we do?

On referral, the person with Barth syndrome and their family or partner is given an appointment for initial assessment by the multidisciplinary team. Follow up reviews are held bi-annually for children under five-years-old and then annually. Each attendance provides the opportunity for review by the multidisciplinary team. We aim for clinics to be approachable and friendly while delivering high quality care. These clinics also provide patients and their families the opportunity to ask questions and receive advice and support around any issues they may have. 

Between appointments there is ongoing email and telephone support from the team during office hours to families and professional involved in their care.

The team also provide and offer home and or school visits where appropriate from specialist nursing, dietetic, psychology, social worker, occupational therapy and physiotherapy. The service will work with other agencies such as social care, education and other health professionals when required so patients can access appropriate care.

There is also the option of video reviews for those patients unable to attend in person due to remote locations.