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The voice of Scotland’s vibrant voluntary sector

Published by Scottish Council for Voluntary Organisations

TFN is published by the Scottish Council for Voluntary Organisations, Mansfield Traquair Centre, 15 Mansfield Place, Edinburgh, EH3 6BB. The Scottish Council for Voluntary Organisations (SCVO) is a Scottish Charitable Incorporated Organisation. Registration number SC003558.

Epilepsy charity campaigns for life-saving technology

This news post is over 10 years old
 

Muir Maxwell Trust is calling on the Scottish Government to ensure technology that can save the life of children with epilepsy is free on the NHS

Families are being urged to pile the pressure on the Scottish Government to fund life-saving epilepsy alarms.

The Muir Maxwell Trust (MMT) wants the alarms, which alert parents when their child is having a seizure during sleep, to be provided free on the NHS.

It is asking all families affected by the condition to take part in a Scottish Government survey investigating the experience of patients and carers who use the alarms.

These alarms give a degree of peace of mind and the return of long lost sleep for parents.

Currently people either have to pay around £740 or rely on charities such as MMT to provide an alarm.

Founder of the trust Anne Maxwell, pictured above with her son Muir who has Dravet Syndrome, said the charity has a permanent waiting list of around 300 families. By filling out the survey those who have an alarm could help ensure others are able to receive one for free.

She added: “Caring for a child with complex epilepsy is challenging, requiring 24-hour care and these alarms give a degree of peace of mind and the return of long lost sleep for parents.

"They are potentially life-saving as there is a risk of death in seizures, particularly whilst sleeping.

"We see this survey is a unique, one-off opportunity to help secure much needed public funding for many more life-saving epilepsy alarms."

The survey is available on the National Neurological Advisory Group website.