Narcolepsy sufferers face uphill struggle in Wales

node leader
7 December 2016

The lack of a treatment centre in Wales for people suffering from narcolepsy is causing problems for people with the condition.

Nikki Huxley, of Rhosllannerchrugog near Wrexham, is one of an estimated 30,000 people throughout the UK who suffer from narcolepsy, a condition that means they have lost the ability to control their sleep function. It’s described as a chronic, neurological disorder and significantly impacts on people’s ability to follow a normal lifestyle and for many driving may be an issue. Things that are often taken for granted such as progressing to their full potential in education, work, relationships and their social life can be severely restricted by the condition.

In Wales, the situation is even more acute, which has prompted Plaid Cymru’s North Wales regional AM Llyr Gruffydd, to raise the matter in the Senedd. He has asked the health minister why diagnosis and, as a result, better treatment is not available in any centre in Wales.

Mr Gruffydd said, “The case of Nikki Huxley, who has to travel to Aintree Hospital in Liverpool for care, is symptomatic of a lack of specialist facilities here in Wales. There is a centre in Abergavenny that provides some expertise but it does not provide for the full range of diagnosis and treatment in the field. Until there is a dedicated sleep centre here in Wales it appears that medication that can help manage the symptoms and lead as normal a life as possible – such as Xyrem and Wakix – will not be made available in Wales.

“Nikki also says drugs available in England are not available in Wales, which is another problem people with narcolepsy face."

“I want to know what the Welsh Government is doing to improve the situation for people with narcolepsy in order to get better diagnosis and treatments here in Wales. Although there is at present no cure for narcolepsy, access to medication and other strategies can help to manage the symptoms and enable people with narcolepsy to lead as full a life as possible. Narcolepsy is often thought of as a sleep disorder, but it’s underlying cause means that it is better classified as a disorder of the central nervous system.”

Matt O’Neill, chair of Narcolepsy UK said, “The charity has been increasingly involved with Jose Thomas in Abergavenny and patients such as Ms Huxley to work towards a better solution for Wales as a whole. We have actively written in support of his request to the Aneurin Bevan University Health Board for more extensive facilities and have attended meetings at Neville Hall hospital to support Dr Thomas in his aim to create a centre of excellence for all sleep related conditions at Neville Hall."

Narcolepsy is estimated to affect about 1 person in 2,500. In the UK there are approximately 30,000 people who have narcolepsy, though it is believed that the majority have not been diagnosed.

Responding to Llyr Gruffydd’s question Vaughan Gething AM, Cabinet Secretary in charge of Health, said, “I have asked the neurological conditions delivery implementation group to consider what greater emphasis we could have on those who are affected by neurologically affected sleep disorder. We know it’s an area we need to expand our understanding of where and how we manage the condition and how we can help and support people in the most effective way possible.”

A video of the question and answer from the Senedd can be seen on the Narcolepsy UK YouTube channel here

For more information about Narcolepsy contact Matt O’Neill, chair of Narcolepsy UK - matt.oneill@narcolepsy.org.uk / 07825 354355 or refer to www.narcolepsy.org.uk