herald

Wednesday 23 January 2019

Little tax on rich but terminally ill Ellie (6) has nappies halved

TERMINALLY ill Ellie Cunningham has had her nappies reduced from eight to four a day under cutbacks within the HSE.

Ellie (6) suffers from a condition that has left her blind, deaf, with cerebral palsy and liver failure.

Her mum Amy Cunningham said that it means she has to spend an additional €96 a month on nappies alone.

This is in addition to the cruel cuts imposed on carers in Budget 2013.

The respite care grant cut will particularly affect their household income and Ellie is on 14 different medicines which will all cost more with the new prescription charges.

Amy said that the reduction in nappies allocated to her child was yet another harsh choice.

"Ellie is down to four nappies per day. She has an uncontrollable bladder and particularly with the medicine that she is on it is very difficult," she told the Herald.

"She needs her nappy changed at least 15 times.

"She used to get eight a day -- at least that was a help."

Children with special needs up to the age of three are only entitled to a limited supply of nappies under recent measures.

The free nappy scheme is available to children over the age of three years who have not been toilet trained because of a disability.

Earlier this year, the HSE changed suppliers of nappies but many parents claimed the new products were inferior, with the new brands tearing, leaking and causing skin rashes.

"The HSE has changed suppliers to save money," Amy said.

"My only other option was to source it where they got nappies. They sell it to the chemist, but they won't sell to an individual. My pharmacist has been very good and said that they would buy in more.

"All in all, that is going to add €96 on to my bill."



sterile

Amy said that Ellie needs a range of medical equipment on a daily basis including syringes, sterile water and dressings.

Amy's home-help hours have also been cut to one hour within a 24-hour period.

"I need to stay with her constantly, she is awake at 2.30am for medicines and wakes up again at 8am," she said.

"Someone needs to watch over her all the time.

"She is self-harming too -- she tries to bite her tongue so I have to watch out for that.

"I am going to lose her eventually but she deserves so much more."

Amy said that she would be lost without the help of those in Ireland's only children's hospice, LauraLynn House.

Lorraine Dempsey, chairperson of the Special Needs Parents Association, said that they have had several meetings about the nappies issue with the HSE and producer.

"Parents have had difficulties and they don't know what to do or who to talk to.

"If parents are having difficulty with the volume the first point of contact would be their public health nurse who will actually take it from there."

A representative for the HSE was unable to comment at the time of going to print.

clairemurphy@herald.ie

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