Epilepsy nurse gave me my daughter back

4 March 2016
Picture posed by model.

Picture posed by model.

Leanne, from Broadstairs, was just 24 when she was diagnosed with epilepsy. Here, with her mum Susan, she explains how thanks to her family and KCHFT’s Epilepsy Nursing Service she’s getting her life back, working again and looking forward to her wedding.
Julia Rogers reports.
Susan remembers sobbing down the phone to Epilepsy Nurse Paul Turner and begging for help.

Her daughter Leanne was just 24 years old and had been epileptic for nine months.

The condition was impacting on every aspect of her life – she couldn’t bathe on her own, cook dinner, or even make a cup of tea and she had no option but to give up her job as a travel agent.

She said: “We were in crisis. Leanne had been forced to go off sick from her job and needed looking after all the time.

We could see no way forward. Several medications were not suitable and it felt like the end of the world. Then Epilepsy Nurse Paul Turner became involved and we instantly noticed a difference.”

Kent Community Health NHS Foundation Trust’s epilepsy service runs 18 clinics across east Kent in GP surgeries, health centres, hospitals and also sees patients at home.

Head of service Tracey Truscott initially set up the department to support both adults and children 13 years ago. Now the seven-strong adult service works across east Kent and has more than 1,000 people on its caseload.

Nurses will carry out an assessment to look at the frequency of the seizures and their ultimate aim is to get patients seizure free, with minimal medication and side-effects.

Leanne said: “Being diagnosed with epilepsy was devastating and a real shock. It started in September 2009, I had enjoyed a really relaxing day on the beach with my boyfriend, Lawrence.

“I went to bed and I had a weird feeling something might happen; I insisted moving the bed away from the wall.

“After about 45 minutes I started violently shaking. Lawrence ran to get my mum and they called an ambulance. I was fitting for about a minute. The next thing I knew, I was in hospital.”

After a series of tests including an EEG (electroencephalogram) and MRI scan, a neurologist confirmed Leanne had generalised epilepsy, a condition where abnormal electrical activity affects all or most of the brain.

She was prescribed medication to control her epilepsy, but unfortunately experienced a number of side effects.

“The initial medications hugely affected my memory and coming off the first medication I had a really bad reaction and started to have lots of seizures,” said Leanne.

“I remember walking through our conservatory and starting to have a fit and getting tangled among the gym equipment. My mum had to try to free me and by the time she did I started to fit again. It was horrendous.”

The epilepsy medication also affected Leanne’s mood and made her incredibly tired.

Leanne said “I was on Keppra for two and a half months which put me into such a rage, I had to be signed off work.

“The drug doesn’t have this effect on everybody, I was unlucky, for some people it works really well.”

But that’s where KCHT’s epilepsy service came in to help in the form of epilepsy nurse Paul Turner.

Susan said: “We were able to contact Paul by phone and he was so supportive, he also gave us advice and information.”

Leanne said: “Paul was my lifesaver. The beauty of an epilepsy nurse is they can write to my consultant and get my medication changed quickly without me having to wait. Previously, I had to wait for an appointment with my neurologist.”

“I would phone Paul whenever I was really worried about something, for example, if I had a seizure or a side effect.

He’s so reassuring; he’s explained my diagnosis, helped me to learn to cope with it and understands how it interferes with my life.”

Thanks to new medication, Leanne hasn’t had a full seizure since September last year and on New Year’s Eve got engaged.

She said: “I am still having partial seizures; it’s like when someone pushes pause on the television and I just go blank for a couple of seconds, but thanks to Paul, my mum and Lawrence, there is now a light at the end of the tunnel.

“Paul has helped me with a phased return to work, he told me what he thought I could cope with and we built it up over four months so I am now working three days a week.

“He’s given me lots of tips on the importance of rest and even helped me with financial things like accessing tax credits.

“I feel like I can start to re-build my life now – I feel so much better than I did.

“I want to improve my medication further so I can get seizure free for a year and learn to drive, and also so I can think about having children. Finally, I am really positive about the future.”

Susan added: “Thanks to the epilepsy service Leanne has a life again. More importantly, she is like the old Leanne again, which we had lost for many months.”

If you live in east Kent and would like to be referred to our service speak to your GP or neurologist.

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