Epilepsy Wales, alongside other members of the All Wales Epilepsy Forum, held their annual Epilepsy Aware event at the Senedd to raise awareness of the key issues affecting people with epilepsy. Over 70 people attended, including Assembly Members, to gather and share information about their experiences of epilepsy services and support across Wales. The event was sponsored by Julie Morgan AM, who commenced proceedings by welcoming all to The Senedd and highlighted the need to reduce risk and lower death rates among those with epilepsy.
The key messages:
- Maintaining good health and well-being
Critical to supporting people to maintain good health and well-being is access to specialist epilepsy services. However, in some localities patients do not have access to an epilepsy nurse, advocacy, training or no specialist provision either social care or education, particularly for those children and young people with complex needs or rare conditions such as Dravet’s Syndrome. There is one Epilepsy Nurse Specialist for adults covering Betsi Cadwaladr University Health Board area when the Royal College of Physician and the Association of British Neurologists recommends nine nurse specialists per 500,000 population. This equates to 12.2 nurse specialist for epilepsy being required across this particular health board, which is a significant clinical risk to patients with epilepsy.
- Reducing attendance at A & E and hospital admission
Across the health boards, there are likely to be over 3000 presenting at A & E. The frequency of known admissions and re-admissions suggests that seizures are poorly controlled in some people with epilepsy. However, other multiple factors need to be considered which result in people presenting at A & E, such as:
- Not being unable to see a GP promptly,
- Isolation and fear of being on their own.
- Non-compliance of taking medication.
- Those supporting people with epilepsy not being sufficiently aware of the condition and how to support compliance or delivering rescue medication to avoid hospital re-admittance.
Presentation at A & E and subsequent hospital admission of people with epilepsy is a financial pressure for health boards. If, those with epilepsy had access to specialist provision it could bring significant savings and reduce the likelihood of re-admission due to better management of their condition. However, a significant contribution is through public education and awareness, but specifically professional development and awareness training to staff in public health, education and social care organisations, but particularly in being proficient in administering rescue medication such as Buccal Midazolam for example to reduce the need to be admitted to hospital.
We would to keep epilepsy on the political agenda because:
- We want accessible and equitable services for all people with epilepsy across the 7 health boards.
- People with epilepsy want prompt diagnosis, optimal treatment and follow up support from specialist epilepsy services.
- People with epilepsy need individualised information, training and support to minimise the impact and risks associated with the condition.