Belfast Telegraph

Trust swept aside dignity of disabled daughter, says mum

The mother of a severely disabled teenager says her daughter’s dignity was “swept to the side” by a health trust which left her without incontinence pads for three months.

Linda Spence, from east Belfast, blasted the Belfast Health Trust after she was “fobbed off with different excuses” when she tried to get the special sanitary supplies her daughter Natasha needed.

Natasha (19), who suffers from Aicardi syndrome was born without a corpus callosum, the thick band of nerve fibres connecting the right and left sides of the brain. The disorder is characterised by frequent seizures, delayed development, lesions on the retina and other problems — Natasha is one of only three females in Northern Ireland with the condition.

Her mum said: “It’s not like I can get these from Tescos, they are specially designed to suit those who have needs like Natasha and have to come all the way from Sweden.

“I don’t ask for much for my daughter. I look after her full-time and I don’t put her into respite as I don’t like to leave her on her own.

“Living on a carer’s allowance of £53 a week, I really don’t feel why they couldn’t deliver us these pads in time, and at least tell me the truth as to the hold-up.

“They end up telling me three months later that they have to order them — it looks like the order wasn’t placed, even though I have constantly called them to enquire.”

Ms Spence, who also has a teenage son, said: “Natasha is such a brilliant daughter, she never cries unless she takes ill. She doesn’t deserve to be treated this way, she is a human being. All I want is for Natasha to be happy, comfortable and treated with dignity.”

Natasha finally received one month’s supply last week, however, Ms Spence has been told she will not be receiving the three months’ worth she missed.

“I feel like I moan all the time to the trust and it’s horrible, but you don’t get listened to otherwise.

“It wasn’t that long ago when Natasha’s wheelchair tipped backwards while we were at the supermarket. We have to carry an oxygen tank and it tipped back with the weight of the canister. If it wasn’t for a couple in front of me who caught the wheelchair’s footrest I would dread to think what would have happened.

“When I told the Belfast Health Trust it was like they didn’t believe me. I had to complain tirelessly about that until they took the wheelchair away to test it — and found it to be unstable.

“I let that go, but I just can’t let this go. This treatment needs to be addressed. I have heard this has happened to others. I have made a formal complaint to the health trust.”

UUP councillor Michael Copeland said: “Natasha’s mother is one of the unsung heroes who day and daily administers care and love for little or no support from those who should know better. She has encountered services from a system which seems blind to individual needs and views everyone who doesn’t fit into a specific category with bewilderment.”

A trust spokesperson said: “Belfast trust are sorry for any distress that may have been caused and we are currently meeting with the family to resolve their issues.”

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