Parents’ anger over NHS trust decision

Linda Potter with her daughter Nina. December 5th 2013 E49215P
Linda Potter with her daughter Nina. December 5th 2013 E49215P

Angry parents who have been sent a letter saying their disabled children’s incontinence pads will be reduced branded the move ‘disgusting’ and ‘outrageous’.

Scores of families from Eastbourne and neighbouring towns were sent a letterfrom East Sussex Healthcare NHS Trust saying from January next year they would be provided with three disposable products per 24 hours but many parents have said this is not enough and criticised the suggestion that they should seek higher Disability Living Allowance (DLA) to cover the cost if they feel the amount of pads is insufficient.

Many say they are already on the higher rate of DLA due to their child’s complex needs and also criticised the letter for saying their was a specialist continence nursery nurse available for toilet training programmes, stating their children would not be able to be toilet trained.

Jackie Hoadley whose son Mathew has cerebral palsy, said, “My son gets through two pads before he goes to school.

“They are saying my child can sit in dirty nappies all day long and if you want extra you have to pay for it out of DLA.”

Since then she said she was sent another letter saying children entitled to continuing healthcare will be provided the normal amount of pads, which includes her son but added, “All children should be assessed on their needs, it shouldn’t be that some can have all of all their pads and other can’t.”

Linda Potter, who has a 17-year-old daughter called Nina who is quadriplegic and has a cerebral palsy, said, “I’m outraged.

“I think it’s wrong discussing my daughter’s incontinence needs in public, it feels degrading but what is actually degrading is someone saying she doesn’t need to be cared for properly.”

Referring to the pads the letter read, ‘These products will be home delivered quarterly and will be a wrap around disposable body worn product which come in a variety of absorbencies. Alternatively we will provide fixation pants and pads and again patients will receive three per 24 hour period’.

Suzie Ray’s nine-year-old daughter Mollie has a unique chromosome abnormality, along with other conditions. Her daughter uses pull-ups but she said she was given a different disposable product to wear which was not suitable and when she asked to switch back was told no. She said, “It’s just disgusting.”

Alice Webster, director of nursing said, “The Trust’s children’s bladder and bowel service has developed a fully integrated paediatric bowel and bladder promotion service in accordance with NICE guidance.

“This means that the supply of products is governed by clinical need and these needs should be regularly reviewed and monitored. The benefits of the NICE guidance includes improving clinical outcomes for children and young people and their families through evidence based treatment that promotes continence, preventing unnecessary long term reliance on nappies and pads.

“Any changes we have made are in line with what is offered by other children’s continence services and are based on best practice and national guidance. Any parent who has any concerns is encouraged to contact the service so that a further review or assessment can take place into their child’s needs.”