From Brighton Evening Argus, December • Story by Andy Chiles
Health bosses are taking steps to improve care for ME patients in the wake of the tragic death of Lynn Gilderdale. The Primary Care Trusts responsible for East Sussex, where Miss Gilderdale lived and had spent 17 years bedridden as she struggled with the condition, have pledged a number of improvements.
They have taken action in part in response to lobbying from the Sussex ME/CFS Society and Brighton Pavilion MP David Lepper who have called for improvements in treatment for the controversial condition.
Colin Barton, chairman of the society, said East Sussex had been slow to make improvements by comparison with neighbouring West Sussex and Brighton and Hove which have been increasing spending.
Critics have accused the trusts of not taking the controversial illness seriously enough.
A joint statement by East Sussex Down and Weald PCT and Hastings and Rother PCT said they are supporting a dedicated county-wide service and are working with a consultant paediatrician at the Brighton and Sussex University Hospitals Trust to develop a service especially for children and young people with ME/CFS.
The PCTs said they already provided support to patients through GPs and a community services team. )Mr Lepper has written to the PCTs calling on them to ensure ME patients are seen within 18 weeks.
Mr Barton said: “In the past the PCTs have seemed reluctant to dedicate money towards these services. They have certainly improved but it has been slow, particularly in East Sussex.”
Miss Gilderdale was a prominent campaigner for improvements to ME care who suffered chronically from the condition.
She was found dead at her home in Stonegate, near Heathfield, on Thursday last week.
Her mother Kay Gilderdale was arrested and bailed on suspicion of murder following allegations of a mercy killing.
She had been the full-time carer for her daughter since she contracted the condition at 14.
Sussex Police yesterday said it was continuing its investigation.
DCI Andy Griffiths said he was awaiting post mortem results but they were likely to take weeks not days, as had previously been reported.