Lack of specialist care shocks sick tot's mum

A LINCONSHIRE mother of a little girl who suffers from an extremely rare epileptic condition says she is shocked by the lack of a specialist epilepsy nurse in North Devon. Julie Evett, whose two-year-old daughter Rose is thought to be one of only 100 peop

A LINCONSHIRE mother of a little girl who suffers from an extremely rare epileptic condition says she is shocked by the lack of a specialist epilepsy nurse in North Devon.Julie Evett, whose two-year-old daughter Rose is thought to be one of only 100 people in the world to suffer from a genetic disorder called Pyridoxine Dependent Epilepsy, moved to Barnstaple on Friday to be near her family.The toddler, the youngest of three children, is also blind and suffers from a muscle condition called hypotonia, which means that her body is as floppy as a newborn baby's. She is unable to turn onto her side on her own or even hold a bottle and needs around-the-clock one-to-one care.Single mum Julie, 30, who appeared on the GMTV sofa with Lorraine Kelly in November to publicise her campaign for better Government grants for disabled children, said she had moved to Barnstaple for the support of her family.Prior to her move on Friday, she was stunned to read a story on the North Devon Gazette website in which Torridge and West Devon MP Geoffrey Cox urged the Devon Primary Care Trust (PCT) to take on a specialist epilepsy nurse at North Devon District Hospital, in Barnstaple.Mr Cox said the charity Epilepsy Action had been campaigning for a specialist nurse, also known as a "Sapphire Nurse" to be taken on at the hospital in order to support large numbers of people in the area who suffer from the condition.Julie told the Gazette: "I have moved to Barnstaple to be near my family but was also hoping to find better care and facilities for Rose than were available to us in Linconshire."We are all very excited about the move as North Devon has a lot to offer but I'm amazed that there is no specialist epilepsy nurse available here."Devon Primary Care Trust, which commissions services for the Northern Devon Healthcare Trust confirmed that there is currently no specialist epilepsy nurse based at North Devon District Hospital.PCT spokesperson Tony Gray said the nearest epilepsy nurse was based in Torbay."There is a neurology service based in North Devon that deals with epilepsy patients through a consultant service," he said."There is an epilepsy action group in North Devon and the PCT is keen to work with the group to develop a business case for a epilepsy nurse," he added.Steve Sylvester, acute contracts manager at Devon PCT, added: "As part of the Devon Primary Care Trust strategic review we are looking to identify gaps in our commissioning services. "This review will help us make decisions on future commissioning and address the current gaps to meet the needs of patients across Devon."According to National Institute for Clinical Excellence (NICE) guidelines published in 2004, epilepsy specialist nurses should be "an integral part of the network of care of individuals with epilepsy".The recommendations go on to say that specialist nurses ensure access to community and multi-agency services and provide information, training and support to the individual, their families and carers.Mr Cox said he had written to the chief executives of Devon PCT and Northern Devon Healthcare NHS Trust urging them to consider an offer put forward by Epilepsy Action. The group is willing to fund a specialist nurse for a year, or two years if taken as a part-time role, on the condition that the local health authority takes over the funding after that period.He said: "Some 700 sufferers in the area are clearly in need of this support and I do not see why the PCT and North Devon Hospital could not continue to provide the area with a service it desperately needs in the form of a specialist Sapphire Nurse.


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