A PAEDIATRIC epilepsy charity has called on the Scottish Government to provide better care for sufferers so that charities can focus on developing treatments.
The Muir Maxwell Trust (MMT) said that it is currently unable to explore the causes of epilepsy and develop cures because its funds are being used to manage symptoms and meet the cost of care.
In the last 10 years, the MMT has provided nearly 3,000 epilepsy alarms, which cost £740, to parents.
The devices make a piercingly loud noise when a child is having a seizure during sleep which enables parents to act quickly, put the child in the recovery position and administer rescue medication as necessary.
The MMT, based in Musselburgh, East Lothian, said that the NHS does not fund the devices, meaning individuals have to pay £740 or rely on charities such as the MMT. It currently has a growing waiting list of around 400 families.
Ann Maxwell, who set up the charity in 2003 after her son Muir was diagnosed with Dravet Syndrome, a severe form of epilepsy, said that the MMT is “unable to explore the root causes and ultimately the cures for epilepsy whilst our funds and attention are being pulled in the direction of managing the symptoms - and meeting the costs of care.”
She added: “Epilepsy alarms are just one example of the problems we face. While generous donations and financial support we receive are helping us to provide assistance to many people, we’re simply unable to meet rising demand.
“What we now need to see is more of a partnership structure. The Government has a moral obligation to provide ongoing care and support to sufferers of severe epilepsy and their families.
“By funding devices like epilepsy alarms and offering assistance such as long term residential care, this would free up organisations like the MMT, who are at the cutting edge, enabling us to finally find possible cures for this often devastating condition.”
The MMT said that there are more than 100,000 children under the age of 21 with epilepsy in the UK. Around half of them have uncontrolled epilepsy and 20,000 are severe sufferers.
It said that 50% of those with childhood epilepsy can have some form of learning difficulty and behavioural problems. In extreme cases, epilepsy causes severe developmental delay.
A Scottish Government spokesman said: “The Scottish Government is pleased to be working in collaboration with the MMT and the National Neurological Advisory Group on a questionnaire on epilepsy alarms to better understand the experiences and views of people with epilepsy, parents and carers.
“The questionnaire is currently being piloted and will be launched next month.”