MIKE HEDGES MS WELCOMES PROGRESS MADE IN TREATING AND SUPPORTING PEOPLE WITH EPILEPSY

MIKE HEDGES MS WELCOMES PROGRESS MADE IN TREATING AND SUPPORTING PEOPLE WITH EPILEPSY

Speaking after a Senedd debate on Epilepsy Services, local Swansea East MS Mike Hedges said… ‘ Memories of my Mother mean that Epilepsy has always been a condition close to my heart and I follow developments in treatments for the condition along with support for people with the condition and their families.

I support people with the condition accessing new therapies which have been proven successful in treating the condition, especially those who have uncontrolled epilepsy. I understand the concerns regarding cist effectiveness but if a patient has epilepsy that does not respond to current treatments, they deserve a chance for a better quality of life through better control of their epilepsy.

Mike Hedges MS15:37:02

I was very pleased to support this debate. Until my mother had a brain tumour, I had no personal experience of epilepsy. Her brain tumour led to epilepsy, and it came as a shock to our family and to her. And actually seeing somebody you know and love going through an epileptic fit is entirely different to seeing a stranger. We all say, ‘Yes, we care about other people’, but when it’s actually somebody who you know and love going through it, it brings it certainly home. It certainly brought the problem of epilepsy into focus for me.217

I am pleased the Welsh Government is committed to ensuring that anyone with epilepsy in Wales should have access to the best possible care. I welcome the addition of neurological conditions, including epilepsy, on the national dashboard that, by the way, are monitoring services, identifying inequalities, and improving care. I urge the Welsh Government to continue to work with others to improve services for all those with neurological conditions across Wales, including those with epilepsy, and including those—which is something I raised yesterday—with epilepsy and something else, another neurological condition.218

I welcome the recently published quality statement for neurological conditions, which sets out the outcomes and standards we expect health boards to achieve in delivering those services. It is important that health boards and trusts that have a responsibility for planning and delivering services to those with neurological conditions, including epilepsy, undertake population needs analysis to establish required levels of staffing, including epilepsy specialist nurses. Epilepsy is a common, fluctuating, and often invisible condition. Its episodic and varying nature means that conventional methods of service delivery are not easily adopted. And as Luke Fletcher said, you can have one event, you may wait several years for the second event, in which case, people don’t have you down as somebody suffering from epilepsy.219

Across Wales, the prevalence is around 1 per cent of the population, which is about 32,000 people, with localised variations linked to levels of deprivation. Optimal use of anti-seizure medication can control seizures in up to 70 per cent of patients, but not for the other 30 per cent of patients. Around 52 per cent of patients achieve sustained seizure freedom, but with 30 per cent of patients becoming resistant to all treatments. This shortfall in success of treatment with anti-seizure medication can lead to lots of things: resistance to disease; poor tolerability; patient adherence to other medication; lifestyle factors; or, in some cases, misdiagnosis. Those people with seizures that cannot be controlled with existing treatment continue to face additional risks due to their epilepsy. Each year, epilepsy has led to over 100,000 unplanned hospital admissions, and 1,000 early deaths in the UK. As many as 40 per cent of these deaths could be prevented.220

There has been progress. In December 2021, the all-Wales adult first seizure and epilepsy management pathway was launched, for use by GPs and in emergency departments, for people with an existing epilepsy diagnosis, as well as those who experienced their first seizure. The open access model for epilepsy clinics has been adopted across Wales. This model encourages patients to take ownership of their epilepsy care and reduces the number of appointments, providing families with a point of contact via the epilepsy nurse specialist to discuss problems as they arise. The important thing is that there isn’t enough of them. It’s quite easy to have a policy saying that everybody should be able to access their epilepsy nurse specialist, but we need enough of them so they can actually access them when they need to. 221

Improving psychological support for people with neurological conditions has been prioritised as an area of focus by the Welsh Government, for which I thank them. The epilepsy dashboard was launched in February 2023. The neurological conditions implementation group, as the former national clinical lead for neurological conditions, worked closely with the value-based healthcare team and Digital Health and Care Wales to have a data dashboard for epilepsy, which was launched in February of this year. The dashboard will support the optimum method of care and enable better understanding of epilepsy services within secondary care in Wales. This will include consideration of appropriateness of regional provision. 222

I’ve been contacted by a constituent who had read with interest about the new fibre optic laser therapy for epilepsy as an alternative to therapy. Their grandson has uncontrolled epilepsy, and his doctors are now talking about surgery. Is it intended to look at the success of laser therapy, or the lack of success of laser therapy, because there’s no shortage in any health condition if somebody comes along with an expensive way of not solving it? But if it does work, will it be rolled out in Wales if it does prove effective, so that people like my constituent can benefit?