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Clinic Feedback

NHS Barth Syndrome Service

Feedback from families attending recent clinics included the following comments:

"It totally exceeded all my expectations. This is the first time we've been able to talk to experts in the condition who are so knowledgeable but who are also so friendly and approachable and willing to listen to and work with us."

"This is the first time we've ever been able to speak to a psychologist and I'm so grateful for this opportunity."

"Being able to share experiences with other families is incredible - we want more!"

A Grandparent's perspective:

"All the families were united, not to complain or cry on each other's shoulders but instead working together with the medical people to find solutions, or contributing by providing a unique perspective. They are finding comfort and hope in speaking to each other and to experts."

"Yes and have gone away with a lot more information than I could have imagined. I feel very grateful for the organisation that has gone into the clinic. Brilliant. Thank you."

We are also able to offer talks and group discussions around issues that are relevant to the families and follow-up any issues with families through telephone contact and in some cases home visits in between clinic times. We can also help families link into local services that if this is helpful for them. We constantly look to the families to help us shape the clinic to ensure it is patient lead and as helpful to the families as possible.

If you would like to access this clinic or talk to any of the healthcare professionals then please contact us.