Epilepsy Aware Event

Prynhawn da a chroeso, good afternoon and welcome.  

And thank you to Epilepsy Wales for inviting me to sponsor and speak at this Epilepsy Aware Event.

Epilepsy Wales has been delivering direct and accessible services to people with epilepsy, their families and carers for 30 years.

Their Mission is to provide:

People with epilepsy, their families and carers access to information, advocacy, support and training to minimise the impact of epilepsy, stigma and discrimination on their lives and to promote better health, well being and independence.

They are seeing more referrals of people with complex needs, more support requested for care package breakdown, pre discharge planning, and threatened family/ carer breakdown as respite packages and hospice care are reduced - and more requests for benefits advice and guidance.

·       There are 20,000 – 30,000 people with epilepsy in Wales.

·       Epilepsy misdiagnosis rates are between 20 and 31%

·       Around 50 people die as a direct result of epilepsy each year in Wales, with about half attributed to Sudden Unexpected Death in Epilepsy.

·       Over 40% of deaths overall and 59% of child deaths could potentially be avoided through better management of the condition.

·       Although potentially 70% of people with epilepsy can have their seizures controlled with optimal treatment, advice and support around lifestyle measures, only 52% currently have control,  with costly implications both human and financial.

·       Over 30% of people with epilepsy fail to gain control over their seizures. These people are at significantly higher risk of social isolation, social emotional and mental health difficulties, epilepsy related accidents and death.

·       One in five people with epilepsy will have a learning difficulty.

Issues raised by service users include:

·       unequal opportunities in health, education, leisure and employment.

·       Inequality of provision- some areas of Wales do not have access to epilepsy services such as epilepsy nurses, advocacy, training services.

·       A lack of support for those with complex needs and epilepsy. Many families face crisis situations including family and care breakdown.

·       A need for better local networks of support and information – and to meet other families with similar needs.

·       People with intractable epilepsy (seizures that are not controlled by medication) and those with "epilepsy plus" (such as learning, physical and mental health difficulties) are far more likely to fall between the gaps in service provision and are most at risk of negative outcomes and an inequality of life opportunities.

·       Parents of children with epilepsy and complex needs find it more difficult to access appropriate education for their child. They are more likely to have difficulties with transport, medical supervision, delivery of first aid or medication than other families. Children are more likely to have poor attendance and underachievement at school.

·       People with epilepsy are less likely to achieve qualifications; they may find more difficulty gaining employment.

·       Many families/ carers do not know how to best support their child or adult during seizures. They need education, training and support. Hospital beds are frequently blocked until this need is met or families are sent home frightened and unsure of how to respond.

•Adults with epilepsy and complex needs find difficulty getting services that meet their needs; many social care workers and unpaid carers do not have epilepsy training and lack confidence and competence to provide support and maintain safety.

•People with epilepsy often face stigma, misunderstanding and exclusion from society.

Service users want:

•To understand their epilepsy, better manage their condition and be an equal partner in their health and social care.

•Advocacy and information-  on employment issues, benefits, support with personal care plans and care packages, and education.

•Opportunities to represent their needs at local and national levels

• support for family members/ carers.

• AND Epilepsy awareness training for nurses, places of education, leisure, employment and social care workers, including the social and emotional consequences of epilepsy on the whole family.

I will conclude by quoting my constituent and neighbour, Donna Price, who told me:

“Feel free to use my name. Simply my goal is to bring a public campaign, on what to do if someone has a seizure. Every day my life is in other people's hands. My seizures are unpredictable and scary to people around me at that time. We need to educate people on how simple actions can save lives. My need for this is simple, I want to save lives and improve the quality of lives. I am an experienced epileptic and I know this will work”.