Sussex Argus 12th December 2008

“ 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. “

The recent tragic death of Lynn Gilderdale has again highlighted how severely ME can affect a minority with the illness. The Gilderdale family who have always been supportive of our organisation have taken part in many awareness campaigns and fundraising activities over the years including a Silver Fish fundraising project co-ordinated by Richard Gilderdale’s colleagues in the Sussex police force. We remember also a number of us along with Richard attending a celebrity golf day in Surrey a few years ago. Lynn and her mother Kay were always willing to help highlight how things are for the very severely affected.

We now have a Condolences page for Lynn, click here. 

The Sussex & Kent ME/CFS Society is extremely saddened to hear news of the death of Lynn Gilderdale from East Sussex. Lynn had been severely affected by ME/CFS for many years. 
According to media reports, her mother, Kay was arrested last week on suspicion of murder and bailed to return in March.
Both Lynn and Kay, who supported her daughter throughout her illness, inspired many in their fight to raise awareness about ME/CFS. 
Chief Inspector Heather Keating, Sussex Police, said: "This is a very tragic incident, but we are not looking for anyone else in connection with it." 
A statement from Lynn's family says:
"Lynn was young, beautiful, loving and caring.
"At the age of 14 years she was struck down by M.E. - an illness greatly misunderstood - and as a result, suffered the stigma attached to this dreadful illness.
"She fought long and hard for 17 years with immense bravery, enduring constant pain and sickness.
"Every system of her body was affected. She required 24 hour care that was provided by her totally dedicated mother, with continuous support from Lynn's father.
"Lynn suffered many hospital admissions, sometimes lasting several months, for life threatening conditions.
"Prior to her illness, which left her paralysed, unable to speak, eat or drink and until recently, no memory, she was an active healthy teenager full of life's dreams. She grew up in the Stonegate area, attending local schools and participating fully in her local community.
"She enjoyed sailing, swimming, cycling and was an accomplished musician.
"Her family praise and admire Lynn for her courage, which she showed to the end.
"She was a much-loved daughter, sister and granddaughter who despite her illness always gave love and support to others.
"In life Lynn strove to help the medical profession improve their insight into M.E. which affects thousands of people, in varying degrees of severity.
"Her dedicated mother, supported by Lynn's family, has pledged to achieve her ultimate goal - for better understanding and recognition of this life destroying illness.
"Lynn's family say her death will leave a massive void in their lives - and the love she gave so unreservedly, will be missed every minute of the day."

We now have a Condolences page for Lynn, click here to sign. 

The Winter edition of the Sussex & Kent ME/CFS Society’s 20 page newsletter includes coverage of the South East ME/CFS Medical Conference and news on the Sussex and Kent NHS services for people with CFS/ME and other topical subjects. Top nutritionist Dr Alan Stewart has written about Vitamin D and there are pieces on The Lightning Process and a planned Pesticides review. Also included is information on gatherings held across Kent and Sussex as well as a list of our telephone contacts. To secure your copy see the Join Us page of this website.