The Muir Maxwell Trust is the leading distributor of free epilepsy alarms by a charity in the UK, to families struggling to cope with their child's nocturnal seizures in epilepsy.
The Trust began distributing potentially life-saving epilepsy movement sensor bed alarms to families in June 2003, coinciding with its launch. Whilst the Trust has funded and completed many different projects over the years, the distribution of epilepsy alarms remains on-going. To date we have successfully distributed over 3,000 alarms at a cost of over £2 million.
At that time an alarm cost £1000. Over the years a number of different alarms have been considered by the Trust and we have worked closely with manufacturers to advise on appropriate modifications to the alarms in order to meet the needs of families in the home, rather than nursing staff in hospitals. We have also managed to reduce the retail cost of a single SensAlert alarm purchase to £712.
For the time being the Trust's preferred supplier is Sensorium. Although Sensorium's epilepsy alarm is not the cheapest available product on the market, our research confirms that it is the most cost effective for our families and the most reliable, particularly over the longer term. If the alarm is looked after, component parts should not require to be replaced as long as the alarm is returned to Sensorium once a year in its origin packaging for a service that will cost just £30 (prices as at 2016). The alarm will be returned within 3/4 working days of receipt. If the alarm is serviced annually there is no reason why it should not be reliable for many years.
The decision to distribute epilepsy alarms to families was based on the Maxwell's own experience of an epilepsy alarm and the quality of life it brought to their son Muir (now 20 years old) and to the rest of the family. The alarm allowed Muir so sleep in his own room and it brought the whole family peace of mind knowing that they would be alerted to a seizure, should Muir have one in the night.
Although the benefit of an epilepsy alarm was immediately evident to the Maxwell family, it has taken years to convince the medical profession and Government of the value of this potentially life-saving piece of equipment for families. The Trust's Family Liaison Manager, Ann-Marie Nelson is inundated with requests for epilepsy alarms from desperate families throughout the UK, all struggling to cope with their child's night time seizures. We regularly operate a wait list as demand exceeds supply. At the same time, the gratitude of families is evident - we are equally inundated with thank you letters from families for their epilepsy alarm when they eventually receive it. Remember, in epilepsy there is a risk of SUDEP - Sudden Unexplained Death of an Epilepsy Patient which is greater in sleep.
Ten years on, we have enough evidence to support the value of the distribution of epilepsy alarms, particularly in the context of quality of life for families. Thankfully, a number of other epilepsy charities have also accepted the merits of epilepsy alarms and have moved in to this arena, including The Daisy Garland, Abbey's Love, Epilepsy Lifestyle and Dravet Syndrome UK. Wherever possible MMT will refer potential beneficiaries to other charities to reduce the demand on our own supply which continues to overwhelm us.
We are pleased to confirm that the Scottish Government has acknowledged the merit of epilepsy alarms based on our work over the last nine years and it is their intention to find a way of providing epilepsy alarms for families in the future. MMT is currently trying to engage with the NHS on the possibility of this happening soon and we will keep you informed. In the meantime, it is our intention to continue with this invaluable distribution service as long as funds enable us to do so and in the absence of the Government support referred to.
To request your voucher for Sensorium epilepsy alarm please email our Family Liaison manager, Ann-Marie Nelson at email@example.com with the following information:
Your child's name and date of birth
Parent's/Carer's name, full postal address and contact telephone number
A brief description of your child's seizures - NB they must have nocturnal seizures with repetitive body movement of 8 seconds or longer.
Alternatively, you may prefer to call Ann-Marie at the Trust's office during business hours Monday/Friday, 9am to 5pm on 0131 273 5256.
The Trust does not means test for movement sensor alarms but donations are gratefully received.