International Epilepsy Day - Support and Signposting for Parents and Carers

Mary_Scope

As we wrap up our focus on epilepsy this week, I want to provide resources and support for parents of children with epilepsy. This post offers signposting to organizations that can offer further support, information and advice.

Epilepsy Action
Epilepsy Action provides information, advice and support to people with epilepsy and their families. They have a helpline and live chat that parents can contact to talk to someone about their concerns. There is also a section on their website specifically for parents and carers and virtual support groups for parents and carers.

Young Epilepsy
Young Epilepsy provides information, advice and tailored support to children and young people with epilepsy and their families. They have a section dedicated to parents on their website section dedicated to parents on their website. They also have a specific Youth Service offering support for children and young people epilepsy including virtual youth clubs and 1-2-1 support online or face to face depending where the young person lives.

The Daisy Garland

The Daisy Garland provides support to children and families affected by drug-resistant epilepsy. They provide family support as well as grants for lifesaving monitors and funding ketogenic dietitians. They also run parent support groups and much more!

Local Offer
Your local offer usually has information about parent and carer support groups for those who have disabled children in your local area.

Listening Ear Service By CONTACT
Listening Ear is a great service for parents and carers of disabled children looking for emotional support. You will be able to talk to the adviser about how you are feeling and get some support for yourself.

Could you recommend other organizations that support parents of children with epilepsy? Have you had any personal experience with these organizations?

What other "weekly focus" topics would be helpful for you as a parent or carer to a disabled child? All suggestions are welcome, no matter how broad or specific!

Please share your ideas below!😀

Legwax

Hi Mary, May I highlight The Kinship Carers charity who support kinship carers. www.kinship.org.uk As a kinship carer, I found them invaluable and they support informal and formal (local authority recognised) carers of children and young people. Often, carers have no formal support themselves if they don't have Parental Responsbility and they can fall through the net of support available to parents and families whatever the additional needs of the child/young person.

Thank you.

Mary_Scope

Hi @Legwax

Thank you for sharing, Kinship Carers is a wonderful organisation and its so good to hear that you were able to get support from them and had such a positive experience!😀