BBC Wales News Website
A woman having epileptic fits has been told will have to wait more than a year to be seen by her nearest specialist.
Ms Hilton suspects the epilepsy she had in her 20s has returned
Sandra Hilton, 52, of Cilgwyn, near Caernarfon, has seizures which often leave her exhausted for days.
New medical guidelines suggest patients needed to be seen within weeks but an epilepsy charity said Ms Hilton's likely wait was typical.
The Welsh Assembly Government said it had formed an expert group and had an action plan to reduce waiting times.
Ms Hilton first had epilepsy 20 years ago. She began having fits after the birth of her second child, but the attacks later stopped.
The signs that the fits had returned began earlier this year. Within weeks, she felt she needed help.
She said: "I went to my doctor in August. I must have had two or three then. They were not full-blown, they were partial."
Her GP referred her to the out patient clinic at Ysbyty Gwynedd in Bangor, where she was told she would have to wait up to 56 weeks for an appointment.
She said: "I was appalled but I didn't really do anything about it. I settled down to wait."
Ms Hilton then heard the charity Epilepsy Bereaved describe how an estimated 1,000 people in the UK die every year due to epilepsy-related events.
Up to 400 of these deaths were considered preventable with proper diagnosis and treatment, the charity said.
"When I realised how important it was to be diagnosed, I started fighting then," Ms Hilton said.
Ms Hilton said she suffered another major fit the weekend before last, but now hopes that she will be referred to a neurological unit in Liverpool, which has a fast-track referral system.
In October, the National Institute for Clinical Excellence (Nice) published guidance for Wales and England on the diagnosis and management of epilepsy in children and adults.
Its key recommendations included ensuring precise and early diagnosis, tailored drug therapy, and regular structured reviews of care, at least annually, for each patient.
Nice's recommendation is that patients with suspected seizures are seen within two weeks.
Epilepsy Bereaved estimated epilepsy affects 26,000 people in Wales.
Director Jane Hanna said senior doctors in Wales had assured her that a waiting time of 56 weeks was not uncommon, and that the problem was worse in south Wales than in north Wales.
She said: "People with uncontrolled seizures are 23 times more at risk of sudden and unexpected death in epilepsy, so it is no reassurance for someone like Sandra if she has to wait 56 weeks.
"If someone develops seizures out of the blue, then that person does need to be seen urgently."
The charity pointed to figures which showed that waiting times for neurology appointments in some hospitals in Wales can be two years or more.
North West Wales NHS Trust, which runs Ysbyty Gwynedd, said the issue was a matter for Health Commission Wales, an executive agency of the assembly government which is responsible for planning and commissioning specialist health services in Wales.
A spokesperson for the Welsh Assembly Government said the improvement of epilepsy services was being taken "very seriously".
A group of experts involved in epilepsy care - including neurology consultants, nurses, GPs, and members of the voluntary sector - had been formed, she said.
This group was developing a policy and action plan for epilepsy and was making good progress, she said.
This included setting a target of a waiting time of no more than 18 months for a first out patient appointment, she said.
"The group aims to develop a framework for the management of epilepsy, promote equal access to appropriate services and support and identify opportunities to promote awareness of epilepsy.
"We are also working very closely with the All Wales Epilepsy Forum, which includes Epilepsy Bereaved.
"Targets have also been introduced by the Service and Financial Framework to help reduce waiting times across the NHS in Wales by the end of March 2005."