A GRIEVING mother whose daughter died after a long battle with anorexia, is channelling her strength to help others.

Sue Barnes's daughter, Kayleigh, died last year aged 29.

Sue has now formed a group for families, carers and friends of those who suffer with eating disorders.

She also took part in the BBC's Victoria Derbyshire Show, which focused on the subject of anorexia and the changes in the way it is treated, which are currently being implemented in Wakefield.

Kayleigh, of Ryde, had anorexia nervosa since her teens, and lived with the illness for well over a decade, but eventually died of multiple organ failure as her body shut down due to starvation.

Sue said: "When Kayleigh was diagnosed there was nowhere for me to go and find any support.

"As a parent you are really just expected to get on with things the best you can.

"I ordered books from Amazon and accessed the charity BEAT just to have some references, some knowledge and some hope.

"Although the guidelines recommend open and transparent communication between all those involved, so often this is not what actually happens.

"So I am forming a group for families, carers and friends of those who suffer with eating disorders so that they can speak with people who know what they are going through — the frustrations and the pain of watching a loved one suffer.

"This is not in anyway a professional mental health group. It is people helping each other the best way they can.

"I am connected to several eating disorder charities, national and international, and am formulating some helpful leaflets.

"I don't want anyone to feel the way I did when I had nowhere to turn, no one to talk to and no advice given.

"My daughter was an inpatient in three different secure eating disorder units and they were not able to help her.

"This left Kayleigh isolated and also meant she had very few friends able to visit her.

"When you send an 18-year-old off of the Island which is the only home she has known, and put her in a secure unit with severe sufferers, only bad will come of that environment.

"At best it is toxic and at worst it becomes a forum for education in how to trick, manipulate and hinder treatment."

She has also spoken to hospice and hospital staff to give them insight into the differences that exist for people with chronic and enduring anorexia, and help educate about the inappropriate use of words and treatments.

She also hopes to establish an eating disorders care pathway on the IW, and plans to speak to GPs, schools, medical students, and others, about what she describes as her "really horrific and tragic life story".

Sue would like to point out that the final care Kayleigh had by the mental health team could not have been better.

She said: "My daughter's death will not be in vain and I will continue to fight to educate as many as I can as to what to look out for, the need for early intervention and for GPs to be more aware of the signs."

Sue is fundraising to help her mission, via Kae's Trust CIC on Go Fund Me.

Contact Sue on islandgirlsue@gmail.com

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