DOCTORS' "egos" are blocking a simple measure which can improve the lives of struggling families, according to the founder of a major UK charity.

Ann Maxwell, who founded the Muir Maxwell Trust and has won multiple awards for her work, is calling on the NHS to inform parents of children with epilepsy about alarms which alert them if a child starts suffering a seizure in their sleep.

The charity, which she launched after her son Muir was diagnosed with a severe form of epilepsy, has capped their waiting list for the alarms they give out at 300.

They have just launched a new fundraising campaign in the hope they can buy more of the devices to address this permanent backlog.

However, to Mrs Maxwell's extreme disappointment new guidelines on epilepsy for the medical profession do not mention the devices.

She said: "It is quite hard to explain why the medical profession particularly in Scotland are so reticent to discuss these matters with patients. It is a cultural thing, more than anything else.

"The groundswell of interest in this subject including the need for alarms is coming from families and from charities and the medical profession do not enjoy being told what to do. They are quite resistant to the wishes of the families."

Mrs Maxwell said she has used an epilepsy alarm in Muir's bed since he was five years old. The device detects movements which indicate a seizure and uses noise and vibrations to alert his parents.

"It was the single biggest thing we did to transform our quality of life," she said. "Until that point Muir was sleeping between us in our bed because it was the best way of keeping a vigil over him. And in the evening you would run up and downstairs checking him all the time. You just never relaxed."

In 2011 a Fatal Accident Inquiry into the deaths of two girls from epilepsy recommended that patients should be warned they could suddenly die from a seizure and discussed the difference night supervision might make.

The new SIGN guidelines, which give medical professionals up-to-date clinical advice, are expected to say that patients and families should be told about the risk of sudden death, known as SUDEP.

But Mrs Maxwell wanted the guidance to also prompt doctors to discuss the potential benefits of the alarms with families.

She stressed families can understand the alarm will not prevent SUDEP - about which little is known - but says the alarms can make a difference to families struggling to cope with profound epilepsy.

Christine Jeans, from Mid Calder, knew nothing about SUDEP or the alarms when her son Stephen McClelland, died at the age of 38. She said: "The alarms do not prevent SUDEP and they might not have prevented Stephen's death, but if I had known, I can honestly say I would have had one regardless. People need to know they are there and can make their decisions from that."

Mrs Maxwell's call comes just days after the mother of a girl who died from a seizure spoke out about the lack of support she was given when her daughter was diagnosed with epilepsy- saying the first time she heard of SUDEP was when she saw the words on her death certificate.

A spokesman for SIGN, part of Healthcare Improvement Scotland, said: "We are delighted to say that SUDEP is covered in the forthcoming guideline and includes a recommendation that patients in the 16-30 age group should be counselled about the risks of sudden unexpected death in epilepsy at an appropriate time for the patient and by an appropriate healthcare professional. We are aware that The Scottish Government also plans to launch a consultation on the usefulness of epilepsy alarms. If evidence becomes available from this consultation then the guideline will be revisited."

The spokesman said HIS is happy to talk to the Muir Maxwell Trust about how the trust might contribute to revisions of the guidelines in future.