Helen Dolling, Kym Winter and Melanie Watson: The impact of a genetic diagnosis on mental health

Behind the Genes

In this episode of the G Word, Vivienne Parry, the Head of Public Engagement at Genomics England, is joined by Helen Dolling, a researcher at the Centre for Family Research at the University of Cambridge, Kym Winter, the Clinical Director and founder of Rare Minds, and Melanie Watson, the Lead Genetic Counsellor for the Wessex Clinical Genetic Services, to discuss the impact that a genetic diagnosis can have on mental health for both the person directly affected and their wider family.

For Mental Health Awareness Week 2023 (15 to 21 May) we want to signpost to resources and support available for those families affected by a genetic diagnosis. Our guests discuss the gaps in mental health support and how the process of receiving a genetic diagnosis could be improved to support the mental health of those affected.

You can read the transcript here: Genetic-diagnosis-and-impact-on-mental-health.docx

Resources and support mentioned in this podcast:

Charities and patient organisations

Rareminds work in partnership with patient organisations to provide psychotherapeutic counselling, groups, and training about the mental health impact of rare conditions.

Unique provide support, information and networking to families affected by rare chromosome and gene disorders.

Genetic Alliance UK have a comprehensive list of condition-specific patient organisations.

SWAN UK supports families affected by a syndrome without a name.

Gene People provide valuable resources for adults and children affected by genetic disorders.

Affinity Hub signposts to emotional support (including counselling) for parents and carers of children with special needs.

Other resources

Rareminds and Medics4Rare Diseases have worked together on a module for Health Care Professionals on 'Rare Diseases and Mental Health'.