Practice Spotlight: Epilepsy

Care Appointments meets Helen MacDonald, an epilepsy fieldworker who herself suffers from the condition…

Lanarkshire-based Helen MacDonald is a Quarriers Epilepsy Fieldworker. As a person with epilepsy herself, Helen is ideally place to offer support to people with epilepsy and also to friends and family members of those with epilepsy.

As a fieldworker, Helen is responsible for:
– advocacy to help people have their voice heard
– clinical liaison with healthcare professionals
– helping people make informed choices
– informing and supporting people of all ages and their families
– providing up to date information on epilepsy
– training for individuals and professionals
– epilepsy awareness and first aid
– administration of rescue medication
– memory awareness training
– North Lanarkshire School Project – providing epilepsy awareness and first aid training for pupils and staff

Helen told us a little of her own fascinating story:
“I had my first simple partial seizure at the age of 23, however I was not aware that I had or was diagnosed with epilepsy until 7 years later at the age of 30. The first experience I had of epilepsy was not actually the seizures as they were very small, simple partial seizures that only gave me a brief feeling of deja-vu, but had an enormous effect on my memory.

“This all began immediately after the birth of my second child and my GP’s reaction was to send me to see a hormone specialist assuming this to be the common reason for memory problems. I seemed unable to convince people that things were much worse than they had been after the birth of my first child and I also found it difficult to cope when people said they understood how I felt because they all had bad memories too! I struggled to deal with being misunderstood.

“My memory problems and tiredness increased as I continued having between 5-10 simple partial seizures each week – this caused me to lose interest in a lot of things. For example, when we moved house I took no interest in the décor and found it all too much to handle.

“When I took my first tonic colonic seizure I was told that I had to stop driving, after being admitted to hospital. This was devastating, as at that time we lived in a small village and I had to drive the children to school. I also travelled a lot and had to cope with life in a remote village where there was only one bus a day. Having to ask for help to overcome this was an embarrassing blow to my self-esteem.

“It was a very difficult time for me and my family when I began the journey of taking the neurologist’s advice to try various anti-convulsant medications. As well as having the simple partial seizures and occasional tonic colonic seizures, I also had complex partial seizures.

“Seven years later I was diagnosed with intractable epilepsy, which cannot be controlled by medication. Following a variety of investigative tests, I was informed that I could consider having temporal lobectomy surgery. {mospagebreak}

“In February 1995 I had the surgery and have been seizure free ever since. It has been a totally life-changing experience – I can drive again and am no longer on medication, but the road to recovery has not been an easy one and I am sure I could have used a lot of help if it had been available.

“Although my seizures have stopped, I am still in the process of rehabilitating myself – by that I mean the recovery of my confidence and especially the improvement and efficiency of my memory.”

Helen has been working as an epilepsy fieldworker with Quarriers for six years now and has a personal desire to develop services in this area.

She said: “Epilepsy does not only affect the person who has it but all their family and friends – and although there is a lot of information and ongoing research being done regarding epilepsy very little actually reaches the people who really need it – the patients, families, teachers, GP clinics.

“Underachievement is understood to be the cause of the unacceptable levels of unemployment and poverty among people with epilepsy, who are three times more likely to be unemployed than the rest of the UK population (NSE). Until recently there haven’t been any services, particularly for adults in Lanarkshire, to combat this. I am currently employed for 20 hours per week and we are hoping to develop this project and work towards bridging the gap between medical and social services by developing the fieldworker’s role, enlarging the provision of training on Epilepsy Awareness and First Aid and Memory Awareness in schools, further education establishments, social and health care services and to the public working in partnership with professionals and community services.”

What is epilepsy? Some facts…
– The term ‘epilepsy’ is used to describe a tendency to have recurrent seizures, involving a disturbance in the brain’s normal electrical activity.
– There are approximately 40 different kinds of seizures, the majority of which are short lived.
– Epilepsy is the most common, serious, neurological condition and can also be a major, long-term disability.
– There are various reasons for the development of epilepsy such as cerebral palsy, meningitis, encephalitis, brain injury, blood clots or strokes and also from drug and alcohol abuse.
– 60% of people with epilepsy develop it with no known reason and there are many psychosocial and psychological aspects to the impact of it affecting relationships, education and employment, such as anxiety, embarrassment, stigma, self blame, loss of confidence and memory efficiency.
– These can all affect social areas such as: Education – dominant hemisphere disturbances can affect language related skills causing misconceptions, low self-esteem and stress; employment – low self identity can cause decrease in feelings of self worth, family life; misconceptions.
– Epilepsy prevalence is 25% higher in the most socially deprived areas compared to the least socially deprived areas.
– 70% of the population with epilepsy in the UK cold be seizure free with optimal treatment.
– Misdiagnosis rates in the UK, where a diagnosis of epilepsy is incorrectly made, are between 20-31%
– Quarriers has the only residential epilepsy assessment centre in Scotland, where patients can stay for up to 8 weeks to be effectively monitored and diagnosed.