Contacts
Consultants
Professor Colin Steward
Telephone: 0117 342 8102 / 0117 342 8044
For urgent advice out of hours, Professor
Steward can be contacted though Switchboard at Bristol Royal
Infirmary on 0117 923 0000.
Dr Alison Hayes
Telephone: 0117 342 8848
Professor Ruth
Newbury-Ecob
Telephone: 0117 342 5107
Multidisciplinary team
Members of the team can be contacted
either via the telephone numbers or email addresses below or via
the website of Patients Know Best (PKB). Access to this for
those involved in a patient's care can be organised via Mrs Brenda
Harding, Service Administrator.
Miss Hayley Smith / Mrs Christina
Morris - Barth Syndrome Clinical Nurse Specialists
Telephone: 0117 342 1693 / 0117 342 8077
Email: Hayley.Smith@uhbristol.nhs.uk
Ms Vicki Powers - Principal Clinical
Biochemist
Telephone: 0117 342 2590
Email: Victoria.Powers@uhbristol.nhs.uk
Mrs Brenda Harding -
Administrator
Telephone: 0117 342 8102
Email: Rachel.Baker@uhbristol.nhs.uk
Dr Vanessa Garratt - Prinicipal
Clinical Psychologist
Telephone: 0117 342 8163
Email: Vanessa.Garratt@uhbristol.nhs.uk
Mrs Nicol Clayton - Specialist
Dietitian
Telephone: 0117 323 5428
Email: Nicol.Clayton@nbt.nhs.uk
Useful links
Barth Syndrome Trust (UK)
The Barth Syndrome Trust offers support to
patients and their families, access to latest information from
around the world, a regular newsletter and invitation to the
international conference held every two years in the USA and
organised by the Barth Syndrome Foundation (USA).
Barth Syndrome Foundation (USA)
The Barth Syndrome Foundation (BSF) was the
first charity established to help patients and families across the
World affected by Barth Syndrome. Based in the USA, BSF organises
an international conference, which acts as the major focal point
for families. BSF and BST fund many research projects looking into
the scientific basis and new treatments for the disease. Dr Steward
is a member of the Scientific & Medical Advisory Board of
BSF.
Cardiomyopathy Association
The Cardiomyopathy Association helps sufferers, their families,
and their medical advisors to best manage the impact of
cardiomyopathy.
Children's Heart Federation
CHF is a federation of support groups in the UK and Ireland for
families with (or expecting) a child with a heart condition.
GUCH
Grown Up Congenital Heart patients Association (GUCH) provide
support for families and patients suffering from
cardiomyopathy.
The Miscarriage Association
The Miscarriage Association acknowledges the distress associated
with pregnancy loss and strives to make a positive difference to
those whom it affects.
SANDS
SANDS is an organisation which can offer support to parents
whose baby has died during pregnancy or after birth. Many of the
staff of SANDS have been through this experience themselves, and
are able to offer support and information.
