Epilepsy 'postcode lottery' for 10,000 Scots

Published on Thursday 20 March 2008 21:15

ONE in four Scots living with epilepsy has no access to speciality nurses in their own area, new figures have revealed.

Almost 9,000 adults and 1,000 children with the condition travel to other health boards in a postcode lottery of services.

More than 8,000 Scots who have both learning difficulties and epilepsy have no speciality nurses at all – 41 per cent of all such patients in the country.

Epilepsy Scotland, which is preparing the figures for the Scottish Parliament's cross-party group on epilepsy, described the survey results as "shocking".

Scotland has only 36 per cent of the nurses required for children and a mere 7 per cent for adults, based on the charity's calculations.

NHS Borders, Dumfries and Galloway, Orkney, Shetland and Western Isles are all without even one epilepsy nurse. Only four out of 14 health boards in Scotland have speciality nurses for adults with both learning difficulties and epilepsy.

Alasdair Allan, an SNP MSP for the Western Isles, who suffers from epilepsy, said the government should set minimum standards for the diagnosis of epilepsy and support of those with the condition.

He said: "I think provision is improving, but it still remains patchy."

Epilepsy Scotland aims to sign up every MSP to the cause and will campaign during National Epilepsy Week in May.

Susan Douglas-Scott, its chief executive, said: "Specialist nurses are a valuable part of epilepsy care. It's shocking that five NHS boards are not providing this service locally.

We want MSPs to support our aim "

The minister for public health, Shona Robison, said: "

In relation to specialist nurses, we are aware of the value which people with epilepsy attach to them. They have an important role."

VITAL REASSURANCE OF HAVING SOMEONE ON THE END OF A PHONE

MARIE and John McLeish look after their 18-year-old daughter Amanda full-time at their home in Glasgow.

She had her first seizure at the age of just five months and has needed constant care ever since, living with a severe form of epilepsy known as Dravet syndrome.

Marie, 44, said they would be lost without their epilepsy specialist nurse, who is a first point of contact for questions or if anything goes wrong.

She said: "You need to have someone who can give you support.

"When your child is having a seizure, this nurse is the very first person who answers the phone. Your epilepsy nurse is the person on the front line and can get a hold of the neurologist for you.

"There's a real need for more epilepsy specialist nurses. Every parent and child deserves to have someone there at the other end of the phone. It must be very, very frightening for parents who don't have that support."