A Cork mother has accused the HSE of asking her to weigh her child’s nappies in order to prove that the four-year old, who has an intellectual disability, needed an extra nappy a day.
Rebecca O’Riordan shared the “humiliating” experience online in a tweet which has since gone viral and prompted an outpouring of support from others who say they have had similar experiences with the HSE.
Tweeting this week, she accused the HSE of asking her to weigh her daughter’s nappies: “I thought being asked to weigh my disabled daughters nappies to justify why she needed 5 a day instead of 4 was the most degrading experience @HSELive could inflict but somehow they continue to outdo themselves again and again,” she wrote.
I thought being asked to weigh my disabled daughters nappies to justify why she needed 5 a day instead of 4 was the most degrading experience @HSELive could inflict but they somehow continue to out do themselves again and again @AnneRabbitte @BernardGloster
— Rebecca O Riordan (@RebeccaHegarty9) August 15, 2023
The “degrading” experience, which she says happened in recent weeks, was described as “disgraceful” and “appalling” by dozens of users, with the request being deemed “a breach of dignity and respect” by another user.
Speaking to Gript, Rebecca said that asking for input and output was a standard practice for public health nurses, for children and adults – but insisted that didn’t make it any less degrading.
“I know for a fact this isn’t unusual,” she said.
The family hadn’t had any issues with getting the necessary number of nappies under the HSE for the four-year-old, who has an intellectual disability, is autistic, and also suffers from epilepsy, until they recently moved into a new area. Rebecca said she didn’t realise there was a cap of four nappies and asked her if the four a day could be increased to five.
She claims that when the request wasn’t put through, she was asked to do a nappy input diary.
“I thought, ‘these are nappies – how do you get input and output for nappies?’” It was explained that if she weighed the nappy before and after use, she would be able to do so.
“I said, ‘I’m sorry, there’s absolutely no way I’m doing that.’ I said under no circumstances.”
Rebecca said the experience is all the more appalling because from anecdotal evidence, it happens on a routine basis to older people as well.
“The sad thing about it is that this isn’t just children. There are older people too, who, instead of using their medical card – because they know that stuff like this goes on.”
“Older women will need these products outside of the normal baby size – which is really expensive. That’s why these continence products are covered on a medical card. But the idea that there are older people out there spending their pension on this because they just don’t want to deal with the degradation is terrible.”
“An older person is just going to think, ‘Not a chance you’re getting that information.’ It would be hard enough for someone to approach them about needing those things, let alone for this to be asked of them.”
Indeed, on Twitter, many people said they were not surprised by her experience – adding that pensioners are among those treated in the same way.
One man by the name of Pete also shared how: “The same thing happened to my sister in law with her disabled son 40 years ago in the Health Clinic in Crumlin, Dublin 12. Degrading.”
Others shared experiences with their own children with additional needs. One user, Amanda, shared with Rebecca:
“We have been asked the same as needed to increase our son’s pad usage and also told that maybe we should give our son less to drink so he doesn’t need to be changed so much! It’s a basic need and right that we shouldn’t have to justify or explain.”
Rebecca claims the HSE also wanted to check the continence output to “make sure” her daughter “wasn’t drinking too much” which she feels showed a lack of dignity and respect.
“It’s morally bankrupt. I think people just seem to forget – if it was them, how much would they like to have to be changed four times a day? Would they like to sit in a soiled nappy? It’s degrading beyond belief.”
Rebecca says that the request is only the latest turn in a series of disappointments and let-dows over her daughter’s care.
In her four years of life, her daughter has never met her disability team in person, her mum claims.
“My daughter is starting at a special school in September – yet she has never had the chance to meet with her current children’s disability network team.”
She adds that when her child’s doctor recommended that a special toilet seat be supplied to help support her daughter – who has some issues with her stability – the disability team came back and said this would not be necessary.
“It was just so she would feel secure, and her doctor thought that this might help. But her disability team turned around and said, ‘There’s no need for that.’ But her doctor recommended it, and we feel she should be entitled to it on her medical card to give her that little extra bit of help.”
Rebecca says that it “adds insult to injury” that her daughter only began to need the extra nappy a day because of extra output, which came about, she says, because she was put on medication which actually caused the child to have toilet accidents.
“The inhumanity of the whole situation just keeps layering and layering on top. She had aspirated during a seizure last year, and she developed a fear of food and drink – which was a totally reasonable reaction.
“The hospital, when they were discharging her said, ‘We really need her disability team to step in and support her.’ But it never happened. She lost 2kg in weight in a very short period of time, so the hospital put her on an anxiety medication to help her with her anxiety around food.
“They also had to put her on daily laxatives because she wasn’t drinking enough. So here we are, over a year later, and she’s still on adult laxatives and anxiety medication due to a lack of input from her disability team.
“And now we have a situation where they are saying ‘No, sorry, there is no need for a toilet support — and would you mind weighing those nappies?’ How much more insulting can the situation possibly get?”
Rebecca, who is a member of Family Carers Ireland, said it is easy to become desensitised to the inadequate treatment she says is given to carers, however, when people started reacting to her Tweet and sharing their own experiences, it emphasised how “outrageous” the situation really is.
She encouraged people to support the work of the carers body and listen to the experiences and support those affected by such rules.
Gript has contacted the HSE for comment.
UPDATE: Cork Kerry Community Healthcare, in contact with Gript on Friday, provided the following statement:
”We are very conscious of the needs of children with disabilities in relation to continence products, and we work to provide the best possible access to such products for those who need them.
“The standard allocation of continence products is four per day, but we must stress that this allocation can be increased following a continence assessment.
“Continence assessments are best practice so that we can make sure that each individual child is receiving the product which best meets their changing needs. A continence assessment or a discussion about arranging a continence assessment does not involve asking a parent to weigh nappies.
”We have looked into these serious allegations in the short time frame you have allowed us. We have no evidence that a staff member asked a parent to weigh a child’s nappies anywhere in that region.”