Prynhawn da a chroeso, good afternoon and welcome.
And thank you to Epilepsy Wales for inviting me to sponsor and welcome you to at this Epilepsy Aware Event, Supporting People With Epilepsy in Wales. Fiona has asked me to say a few words, although I am sure you are al interested in the line dancing performance outside the Senedd by Epilepsy Wales’ South Wales support group at one o’clock!
This even is your opportunity to have your say, raise issues, share your experiences with Assembly Members and Epilepsy Wales.
Any questions or issues raised not dealt with today will be passed on to your relevant Assembly Members.
Epilepsy is the most common serious neurological condition.
Epilepsy - related episodes are the commonest reason for emergency health service activity, accounting for the largest number of bed days in our district general hospitals.
1 in 94 people in Wales have epilepsy
1 in 10 people with epilepsy are children under the age of 18
1 in 5 will have learning difficulties, including those with an Autistic Spectrum condition.
This means there are up to 30,000 people with epilepsy in Wales, with epilepsy misdiagnosis rates of 20 to 31%.
Around 50 people in Wales die each year as a direct result of epilepsy, 50% of which are 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.
Potentially 70% of people with epilepsy can have their seizures controlled with optimal treatment, advice and support around lifestyle measures.
Currently, only 52%, of people have control.
This 18% gap has costly implications both human and financial, to individuals, family and the wider community.
And over 30% of people with epilepsy fail to gain control over their seizures.
These people are at significantly higher risk of social isolation, exclusion from employment, lower levels of - health and wellbeing and at greater risk of social, emotional and mental health difficulties, epilepsy related accidents and death.
The impact of epilepsy is far reaching. It has health, safety, social, economic repercussions for individuals, families and communities.
Epilepsy Wales has been delivering services to people with epilepsy, their families and carers for over 30 years.
- Providing direct and accessible services to people and families affected by epilepsy.
- Working within hospital clinics, providing support both through their helpline outreach services and support groups. This year they have seen new support groups in opening both North and South Wales, and have had several events including a recent one in Rhos on Sea North Wales for children and families.
- Working in partnership with statutory services and care provision and services.
- Providing Epilepsy and Rescue Medication Training
- Supporting the development of skills and knowledge in carers, teachers, escorts and others
- And promoting safety and independence of people with epilepsy while reducing preventable hospital admissions.
In the current budgetary environment they have seen more referrals from people with complex needs, and more support requested for care package breakdown, pre discharge planning, and threatened family/ carer breakdown as respite packages and hospice care are reduced.
They have also received more requests for benefits advice and guidance as other agencies and experience tight budgets and increased demand.
People with epilepsy, their families and carers require 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.
The issues raised by their service users, some of whom are attending today, include:
•People living with disabling epilepsy do not have equal opportunities in health, education, leisure and employment.
• Some areas of Wales do not have access to epilepsy services such as epilepsy nurses, advocacy and training services, including specialist health or education provision. This is particularly difficult for those with complex needs or rare conditions.
•There is a lack of support for those with complex needs and epilepsy. Many families face crisis situations including family and care breakdown.
•Alienation, lack of trust and fear prevents some service users from accessing statutory services.
•There is a need for better local networks of support and information, and opportunities to meet other families with similar needs to share experiences.
•Service users need accessible and timely support and information.
•Families and carers want to have the information, skills and confidence to better care for individuals affected by epilepsy, to be able to advocate for them, and to have service providers, schools, doctors and commissioners listen to them.
•Evaluation of Epilepsy Wales’ own research and feedback mechanisms demonstrates that people with intractable epilepsy (seizures that are not controlled by medication) and those with "epilepsy plus" (epilepsy and other co-morbidities such as learning, physical and mental health difficulties) are far more likely to fall between the gaps in services and provision, to be most at risk of negative outcomes, and to suffer an inequality of opportunities in life.
•Parents of children with epilepsy and complex needs find it more difficult to access appropriate education for their child. Children with epilepsy are more likely to have difficulties with transport, medical supervision, and delivery of first aid and medication than other families. They are also more likely to underachieve at school and have a poor attendance record.
• People with epilepsy are less likely to gain qualifications and find it more difficult accessing the employment market.
•Many families and carers do not know how to best support their child or adult during seizures. They need education, training and support. Hospital beds are frequently full, and until this need is met families are sent home frightened and unsure of how to respond. Families become isolated and feel excluded because extended family, friends and people within the community may feel afraid or uncomfortable with coping with epilepsy.
•Adults with epilepsy and complex needs find difficulty in getting services that meet their needs; many social care workers and unpaid carers do not have epilepsy training and lack confidence and competence to support them and maintain safety.
•People with epilepsy often face stigma, misunderstanding and exclusion from society. Many feel they do not have the same opportunities to learn and contribute.
Service users have indicated that they want:
•Others to understand their epilepsy, be able to better manage their condition and be an equal partner in their Health and Social Care.
•Better understanding and awareness within communities, schools and amongst employers, with 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.
•Advocacy and information that includes support with employment issues, benefits, personal care plans and care packages, and support with education.
•Opportunities to represent their needs at local and national levels
•Support for family members and carers.
At this event last year, I concluded 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 awareness 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”.
She subsequently told me that she proposed a “Seizure Savvy” campaign focused on all seizures, not just those caused by epilepsy.
And she is currently planning a sponsored skydive to raise money for Epilepsy Wales.
So thank you for listening to me and I hope you enjoy the rest of today’s event.