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Batten disease, a terminal, childhood condition, has a devastating impact on the whole family’s mental health. Our newly launched family well-being service has seen double the expected demand. We need to maintain and expand the service to offer vital mental health support to more families.
Categories
Beneficiaries
Situation
Batten disease is a terminal neurodegenerative condition that affects children and young people. Families are grieving from the day they receive the diagnosis. Our beneficiaries face inequalities in access to mental health services across the UK. They have expressed a need for specialist support with an understanding of how trauma and loss impacts the whole family and can have a lifelong impact. Siblings who are young carers need the opportunity to connect with other siblings in a safe space.
Solution
We have launched a holistic family well-being service, enlisting the support of The Maypole Project, an organisation that specialises in providing therapeutic support to families who have children with complex needs and life limiting conditions. These services are free at the point of access for families and include: one to one counselling, couple therapy, family group therapy, children’s therapies and a specialist activity support group for siblings. We aim to increase capacity to meet demand.
