CP Network and Epilepsy Action Collaboration-Interview with Jan Paterson Epilepsy Action

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As part of Cerebral Palsy Awareness month, we are discussing CP and co-existing conditions. Janet Paterson from Epilepsy Action Cymru is hosting an insightful presentation on March 12 2025, "Epilepsy-It's not one type of seizure." Please register at https://www.scope.org.uk/cerebral-palsy-network to attend this event.

I recently interviewed Jan where we discussed her background, her role at Epilepsy Action and how she raises awareness of epilepsy. Supporting those living with the condition. Here is a transcript of our interview.

Q 1: Hi Jan, Welcome to Scope’s online community. The CP Network and Epilepsy Action are working together to raise awareness of cerebral palsy and co-existing conditions. We thought it would be useful for our community to learn more about epilepsy and the impact it can have on a person’s life

Before we get into the details, tell me about yourself and your background

A 1: I am a mother of three grown-up children, all of whom have left home, and a proud grandmother to a 10-year-old girl named Enia. I live in North Wales but support individuals living with epilepsy across the whole of Wales.

My professional background is diverse. Ranging from working as a nanny to becoming a nursery manager, and later an employment advisor, helping people with disabilities find suitable jobs. I also worked with families of children with additional needs through SNAP Cymru. Later, I joined Conwy Council, where I worked on various projects, including my role as a parenting practitioner. Essentially doing work like "Supernanny," which was quite an experience! I remained in that role for eight years.

It was during this time my eldest son, Richard, suddenly began to experience absence seizures at the age of 26. A passionate car enthusiast and mechanic, the prospect of giving up driving was devastating for him. At the time, he was working as a support worker for adults with challenging behaviour. A job he excelled at, thanks to his remarkable patience. Fortunately, his employer was very supportive. They adjusted his shifts to accommodate his need for public transport in rural Wales with limited bus services. He continued in that role for several years.

After months of uncertainty and distress, Richard underwent an EEG, which revealed unusual brain activity. (He jokingly reassured me that, yes, he does have a brain!) He was then referred to Walton for further tests, where a CT scan uncovered a large tumour in his temporal lobe. Two weeks later, he underwent a nine-hour operation. The relief was indescribable when he came out of surgery and was able to speak immediately. A month later, a follow-up scan confirmed that the tumour had been completely removed. His seizures stopped, and much to his delight, he regained his driving license and rejoined his car club. Today, Richard continues to pursue his passion for cars and is now a master technician at a well-known garage in Llandudno.

A few weeks after his surgery, I found myself seeking a new challenge. That’s when I came across an online job posting from Epilepsy Action, looking for a Development Officer to expand their services into North Wales. I jumped at the opportunity, applied, and got the job. From the start, I focused on establishing support groups across North Wales. It was through this role that I met Sara Edwards in 2016. She has been a dedicated supporter of Epilepsy Action, collaborating with NHS officials and key stakeholders to improve epilepsy services.

Q2: What is your role with Epilepsy Action?

A2: Below are some of the tasks I need to do to complete my role:

Raising awareness and increasing understanding of epilepsy

• Lobbying and campaigning for a better future for people with epilepsy
• Representing the voice of people with epilepsy in Wales at strategic bodies such as NHS and Welsh Government.
• Raising awareness and increasing understanding of epilepsy.
• Lobbying and campaigning for a better future for people with epilepsy, through linking in with people with lived experience.
• Providing epilepsy awareness training sessions to groups who want to learn more about epilepsy. These include private employers, healthcare and service providers and schools.

Q3: What is the definition of epilepsy?

A3: “Epilepsy is a sudden burst of intense electrical activity in the brain.” We all have electrical activity in our brain. It’s how the brain works, how our brain tells our body to do things, causes thoughts, feelings and sensations. Epilepsy is when these otherwise normal signals become excessive for a short period.

Q4: How does the condition impact someone?

A4: Epilepsy impacts people in a variety of ways, affecting their physical health, mental well-being, daily life, and social interactions. The severity and frequency of seizures vary from person to person, making each experience unique. Here’s a breakdown of the keyway’s epilepsy can impact individuals:

1. Physical Health

• Seizures – The most direct impact, ranging from brief absence seizures to severe convulsions.
• Injury Risk – Falls, burns, or accidents during seizures can cause serious harm.
• Medication Side Effects – Fatigue, dizziness, weight gain, or cognitive issues from anti-seizure drugs.
• Sudden Unexpected Death in Epilepsy (SUDEP) – In rare cases, epilepsy can be life-threatening.

2. Mental and Emotional Well-being

• Anxiety & Depression – Fear of seizures, stigma, and the unpredictability of the condition can lead to mental health struggles.
• Memory and Cognitive Issues – Some types of epilepsy and medications can affect concentration and memory.
• Sleep Disruptions – Seizures, medication effects, and anxiety can impact sleep quality.

3. Impact on Daily Life

• Driving Restrictions – Many people with epilepsy are unable to drive due to safety concerns.
• Employment Challenges – Discrimination, difficulty maintaining consistent work, or workplace safety concerns.
• Education Difficulties – Learning may be affected by seizures, fatigue, or concentration issues.
• Social Limitations – Fear of having a seizure in public can lead to isolation.

4. Social and Relationship Challenges

• Stigma & Misunderstanding – Many people face discrimination due to misconceptions about epilepsy.
• Impact on Family & Caregivers – Loved ones often take on caregiving roles, which can be emotionally and physically demanding.
• Limited Independence – Restrictions on activities like swimming alone, operating machinery, or certain jobs can reduce autonomy.

5. Financial Burden

• Medical Costs – Medication, specialist appointments, and potential hospital stays.
• Reduced Work Opportunities – Some people struggle with maintaining a full-time job, affecting their income.

Despite These Challenges…

With the right support, treatment, and understanding, many people with epilepsy can lead full and active lives. Advocacy, improved healthcare access, and raising awareness can help reduce stigma and create a more inclusive society.

Q5: Can epilepsy be cured?

A5: Currently, epilepsy cannot be completely cured in most cases, but it can often be well controlled with treatment. The management of epilepsy depends on the type, cause, and severity of the condition. Here are some key points regarding treatment and potential cures:

Medications (Anti-Epileptic Drugs - AEDs)

• About 70% of people with epilepsy can control their seizures with AEDs.
• If a person remains seizure-free for several years, their doctor may consider stopping medication.

Surgery

• In some cases, epilepsy caused by a specific brain lesion or abnormal tissue (such as a tumour or scar) can be treated with surgery.

Dietary Therapy

• The ketogenic diet (high-fat, low-carb diet) is especially effective for children with drug-resistant epilepsy.
• Modified Atkins diet is a less strict alternative that may also help.

Can Epilepsy Go Away?

• In some children with benign epilepsy syndromes, seizures stop as they grow older.
• Some adults may become seizure-free with medication and may eventually discontinue it.

Q6: If people want to learn more or need support, what are the ways to contact Epilepsy Action?

A6: Epilepsy Action offers various ways to access information and support, below are some examples.

1. Helpline:

• Phone: Call 0808 800 5050 (free from UK landlines and mobiles).
  • Hours: Monday to Friday: 8:30 am – 5:00 pm; Saturday: 10:00 am – 4:00 pm.
• Email: Send inquiries to helpline@epilepsy.org.uk.
• Live Chat: Available on their website during helpline hours.

2. Text Support:

• Text 0747 963 8071 (UK only); responses within 24 hours on working days.

Thank you for your time today Jan.

Do you have epilepsy or know someone with the condition? What advice would you give to others? What are the main issues facing people who live with epilepsy?

Let us know in the comments!