Mental health support

Caring for a child with Dravet Syndrome is life-changing. Parents and carers face complex medical emergencies, disrupted sleep, long-term uncertainty, and immense emotional strain; often with little space to process their own wellbeing. At DSUK, we believe families deserve support not just for their child, but for themselves.

The emotional toll: what the research tells us

A recent study, Trauma, Coping and Adjustment When Parenting a Child with Dravet Syndrome, has shed light on the psychological impact of this condition on parents.

Families report:

• • High levels of anxiety and depression
    Parents describe these as dominant and ongoing consequences of their caring role.
  • Symptoms of trauma or PTSD
    The unpredictable, often life-threatening seizures cause repeated traumatic experiences, which may lead to acute or complex PTSD.
  • Chronic stress and sleep deprivation
    Many parents remain in a constant state of alertness leading to exhaustion and difficulties coping with daily life.
  • Grief and isolation
    Parents grieve for the loss of expected milestones and experience disconnection from typical social circles or support networks.

How we can help

We’re here to support you, not just as a parent or carer, but as a person with your own needs and wellbeing.

 Accessing support from DSUK

• Family support team
  We’re here to listen, advocate, and guide you through accessing mental health, respite, or carer services.
  Email: [email protected]
  Call: 01246 912421
• Peer support and community connection
  Join our parent and carer networks to connect with others who truly understand.
• Workshops and events
  Our events at Center Parcs and beyond include dedicated spaces to focus on emotional wellbeing and mental health.

What to do in a mental health crisis

If you’re in crisis or feel overwhelmed, you are not alone and help is available.

 Immediate help

• Call 999 if you or someone else is in immediate danger.
• Call 111 (NHS non-emergency line) and press option 2 for urgent mental health support.

 24/7 crisis support services

• Samaritans: Call 116 123 (free, 24/7)
• Shout: Text SHOUT to 85258 for free, confidential support via text
• Mind Infoline: 0300 123 3393 (Mon–Fri, 9am–6pm)

 Speak to your GP

Ask for an emergency appointment to discuss your mental health. You can say:

“I’m not coping and I need urgent mental health support.”

Support beyond DSUK

You can also seek help through the NHS and other services. Here are some starting points:

Speak to your GP

You can use these talking points:

• “I’m experiencing ongoing stress and signs that may be linked to trauma.”
• “Could you refer me for trauma-informed counselling or psychological support?”
• “Can I be assessed for carer’s support or respite services?”
• “I’d like my mental health to be reviewed regularly not just once.”

Ask your GP about:

• IAPT (Improving Access to Psychological Therapies) – for counselling, CBT, and stress support.
• Specialist trauma therapy – such as EMDR or trauma-focused CBT.
• Bereavement or anticipatory grief counselling.
• Referral to community mental health teams or carers’ organisations.

Organisations that can help

• Mind – Mental health support, information, and helplines.
• Carers UK – Expert guidance on carer rights, benefits, and support groups.
• Scope – Offers practical advice, emotional support, and free helplines for disabled families. Their online community and Navigate service (for parents of children under 18) provide tailored emotional and practical support.
• YoungMinds – Advice and mental health support for young carers and siblings.

You are not alone

If you’re struggling, please know that support is available and you deserve it. Whether you need someone to talk to, help accessing support, or just a moment to breathe, DSUK is here for you.

Contact the Family Support Team
Call us on 01246 912421