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Transition was good. Everyone was friendly, helpful and caring

Barth Syndrome


If you have Barth Syndrome you will be looked after by the team in Bristol, they are the specialist centre for the whole of the UK.

Consultants in the Barth Service provide care for both childrens and adults, but you might find that other members of the team change when you move to adult services. Outpatient appointments when you are under 18 years old are in the Childrens Hospital, when you transfer to adult services, you will still need to come to Bristol but will be seen at the Clinical Research and Imaging Centre, Bristol Royal Infirmary or the Bristol Heart Institute. The other difference is that if you need to stay in hospital while you are under 18 years old you may stay on Apollo 35 in the Bristol Royal Hospital for Children, which is a ward designed specifically for young people. If you have to come into hospital and are 18 years old or older you will stay in the Bristol Royal Infirmary which is next to the Children's Hospital.

The main differences between the hospitals are the visiting times and facilities. You can find out more information on the hospital website here. Although usually family and friends can't usually stay overnight on wards in the adult hospital, staff know that it might make you feel and a bit anxious and so do ask if you feel that it would be helpful to have someone stay. You can talk about this with your team or someone on the ward when you are admitted.