Concerns raised over epilepsy care
A COUNCILLOR whose daughter suffers from severe epilepsy has called for a greater awareness of the condition in a bid to break the stigma that surrounds it.
An estimated 5,500 people in Suffolk are affected by some form of the illness – yet all specialist treatment is outside the county.
Caroline Page’s 17-year-old daughter Emma is currently at the Sir William Gowers Assessment Centre, run by the National Society for Epilepsy (NSE) in Chalfont St Peter, Buckinghamshire.
It means Caroline, a county councillor for Woodbridge, is forced to travel more than 100 miles to visit her. On Sunday she will be cycling the distance in a bid to raise money and increase awareness.
“Although she is fit, active and intelligent, Emma’s life has been overshadowed by intractable and often dangerous epilepsy for the last ten years,” said Caroline. “It has spoilt her education, interfered with her social life, consigned her for weeks on end to hospital, stopped her ever being on her own and every single day prevents her from doing the things all other people of her age take for granted.
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“Epilepsy remains very much a ‘Cinderella’ condition, kept secret, inadequately recognised and poorly funded. People are often anxious to prevent others knowing they suffer from it because they fear discrimination.
“Unfortunately there is a disgracefully low profile of epilepsy care in Suffolk – it’s currently so low that specialist healthcare is outside the county.”
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Her concerns have been echoed by charity chiefs.
An NSC spokeswoman said: “There are very few specialist epilepsy consultants in England. Many of these are based in tertiary care centres like the NSE’s Chalfont Centre. The rest are sprinkled thinly across NHS hospitals.”
Epilepsy Action campaigns manager Aimee Gee said health services for people with epilepsy fall far short of minimum requirements set out by the National Institute of Health and Clinical Excellence, with a lack of specialist nurses a particular concern.
“Epilepsy is often very misunderstood and is not widely talked about,” she said. “Many people with epilepsy are still discriminated against due to ignorance about the condition.”
NHS Suffolk said its was committed to providing support and care for epilepsy patients of all ages.
“Paediatricians, health visitors and nurses based in the community work in close co-operation with their colleagues in hospital services, and are well equipped to deal with epilepsy in children and young people,” a spokesman said. “Continuity between children’s services and adult services can be a sensitive area, and we are working to ensure that every patient is supported through this transition.”
On Sunday Caroline, who has started her own epilepsy support group on Facebook, will be cycling from her home in Woodbridge to visit her daughter in a bid to raise as much money as possible for the NSE. She will be joined by her 15-year-old son Ben and cousin Paul Dennis.
“Because I choose to use sustainable transport I have been getting the train and then cycling to Buckinghamshire anyway, but this time we thought we’d bite the bullet and do the lot by bike,” she said.
To sponsor the trio visit www.justgiving.com/Paul-and-Caroline-go-visiting.