“Epilepsy Aware” At The Senedd

Mark Isherwood, Shadow Minister for North Wales, Communities and Housing, calls for Welsh government statement on epilepsy support

Following the “Epilepsy Aware” at the Senedd” event on May 29th, 2012, sponsored by North Wales AM Mark Isherwood, Mr Isherwood called for a statement by the Welsh Government on its support and proposals for people with epilepsy and their families.

Speaking in the Business Statement, Mr Isherwood said: “We must recognise and standardise good-quality care and effective practice, measure the true cost of epilepsy to families and communities and respond to reduce the risk of epilepsy and its impact, noting that one in every 94 people in Wales has epilepsy, one in 10 of whom are under the age of 18.  An estimated 20,000 to 30,000 people in Wales have epilepsy and that there is often gross underreporting”.

“One person in 20 of the general population will have a seizure during their lifetime, and that of an estimated 1,200 deaths as a result of epilepsy across the UK annually, approximately 400 to 500 could have been avoided… we are standing at a crossroads, and real improvements in epilepsy treatment are needed.

If we do not manage epilepsy properly from childhood, it creates economic dependence and higher costs for education and health services.

Without ideal medical management, people are disenfranchised from life, but with it, 77 per cent of people could have their epilepsy controlled and therefore be educated, go to work, contribute to the economy and achieve higher levels of social inclusion.”

Mr Isherwood also spoke of the crucial role of Specialist Nurses and of the concern and anxiety around their future across Wales. He said: “A presentation by an Epilepsy Specialist Nurse and a representative of Epilepsy Action at the Cross Party Group for Neurological Conditions explained how much money was being saved across Wales by Specialist Nurses.

We heard that Specialist Nurses, including those for MS and Parkinson’s, were worried about their jobs and futures – and particularly about the people they care for.

I therefore asked the Health Minister whether she would attend a future meeting of the Cross Party Group to listen to these concerns and am pleased that she has agreed to attend our next meeting on 26th June 2012.”

The Minister for Finance and Leader of the House, Jane Hutt, said the Welsh Government is working to ensure that not only prevention awareness, but engagement with those affected, is key in terms of its priorities.

Ceri Hughes, a north Wales school pupil speaks at Senedd Epilepsy Aware Event

The event included a presentation prepared by Wrexham school pupil Ceri Hughes. Ceri is the sister of Iwan, who has Dravet’s Syndrome, a devastating epilepsy syndrome.

Referring to the family in his speech, Mr Isherwood, who is Chair of the Assembly Cross Party Group on Neurological Conditions, said: “Ceri’s contribution illustrates the invaluable role played by siblings and young carers in families with disabled children.

“Her presentation will demonstrate the real impact of epilepsy and the determination of Iwan and his family to ensure that, despite his condition, he has the same opportunities to be a typical 4 year old as any other child.

“Iwan’s mother also deserves particular praise. In addition to her caring role, she has been active in the Epilepsy Wales Llay Support Group. Epilepsy Sucks UK Group and Dravet’s UK, raising funds and awareness for these charities.

“The implications of living with epilepsy are far reaching for the individual and for the family and have costly implications for government and service providers.”

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