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Charity calls for more seizure alarms for children with epilepsy

A charity has urged NHS officials to ensure that all children with severe epilepsy are given devices that alert their parents if they have a seizure during the night.

The Muir Maxwell Trust, which provides epilepsy alarms to parents as part of its work to support children and their families coping with the condition, said that it is struggling to meet rising demand for the devices.

The alarm alerts parents if their child is having a seizure during sleep by making a loud noise, enabling them to put the youngster in the recovery position

and administer emergency medication if necessary.

The NHS does not currently fund the devices, which cost around £740, leaving families to pay out the money themselves or rely on handouts, the charity said.

Ann Maxwell, founder of the charity, said: “As a charity, the Muir Maxwell Trust 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.

“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.

“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.”

 

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Readers' comments (2)

  • As an epilepsy nurse I find this article misleading. Firstly, alarms can be obtained for around £250 or less, although this is not insignificant of course. Also, in most areas of the UK, patients can access a typical call system through their local council community alarm department for a few pounds a week, less if on benefits, which has various add-on's including seizure/fall alarms. For those in residential settings who are likely to have more severe epilepsy, the alarm is funded through their care package. It must be remembered also that alarms are not foolproof and can cause false alarms if a person moves around in bed, and may not pick up more subtle seizures. Ultimately, as Anne Maxwell says, better treatments for epilepsy to reduce the number of seizures is important too, as is expert medical management with appropriate drug treatment.

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  • To the anonymous epilepsy nurse above, the article is factually accurate. What you think is happening and what is actually happening in many LA's is quite different. There are numerous alarms available on the market and the MMT reviews them all regularly (MMT founders test them under the mattress of their own child's bed who has epilepsy). Cost is not reflective of quality and the alarms MMT distributes are considered to be the most reliable, cost effective and robust, lasting many years with out the need for any spend other than an annual maintenance cost of £30. MMT is a paediatric epilepsy charity and provides alarms to families for their children to alert them to a seizure in the night whilst sleeping. Pagers are inappropriate for children in these circumstances and they are not useful to adults if their seizures occur whilst sleeping. With one or two exceptions, epilepsy alarms are NOT funded by social services and indeed social workers as well as epilepsy nurses and doctors come to MMT on behalf of families from all over the country for a potentially life saving epilepsy alarm. Families are frustrated and upset by some medical professionals who tell them that they can be obtained via social services. It is not the case for the majority. Finally, lease be aware that false positives are a thing of the past as the technology is now so advanced and advancing further all the time. Epilepsy alarms reduce the risk of SUDEP and bring some peace of mind for families as well as the return of long lost sleep. The therapeutic benefit of epilepsy alarm technology for parents and carers, including siblings, should not be underestimated either. MMT has been distributing alarms for over 10 years and has a wealth of knowledge and experience about the technology, the need and the available funding. The prejudice of those who purport to know better than the families who live with severe epilepsy, particularly in their children, is the greatest barrier we have to securing essential funding for once and for all.

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