The mother of a severely incontinent child says a decision by Cornwall Council to stop providing continence goods for disabled children across the Duchy is outrageous.
Parents with disabled incontinent children have been told by the council that they will cease being provided with products from September 2025.
Instead, they are being told that they should focus on toilet training.
The move has caused shock and anger among parents with disabled children, with one parent with two disabled children setting up a petition on Change.org opposing the move.
Another parent, Mari Taylor from Mawnan Smith, whose child is severely incontinent due to a rare genetic condition, said she was shocked by the decision.
Her son, Stanley Barnes, aged 11, has been diagnosed with Sanfilippo, a condition likened to Alzheimer's, that means he can now no longer communicate with his family or remember everyday words.
And although he remains active, mum Mari says his cognitive skills are now so limited he often doesn't even recognise her.
Stanley was first diagnosed with the condition aged just 16 months.
Recently Stanley and his siblings also suffered the sudden loss of their father Ross, a popular local teacher.
Mari says stopping funding for disabled children to have nappies from next year will put her in a severely difficult financial position.
And she says she is shocked that, in response, Cornwall Council has said that the emphasis should be on toilet training instead.
“Our children wear nappies not out of choice or lack of training on how to use a toilet but through medical needs, so in that case none of them should have them taken away.”
She said after receiving the letter from Cornwall Council she spoke to the school nurse, who told her she’d have source her own.
“I would love to see how the council will come in and train my son who has Sanfilippo (like Alzheimer’s) how to use a toilet when he is losing the ability to walk, feed himself or understand,” she said.
“He functions like a three-month-old baby and will only regress. He is in the final stages of his disease but medically well, which I'm quite proud about!"
She added: “He has never been able to use the toilet and never will. It is insulting to suggest a workshop or training to me. I work in early years education and know how to toilet train a child!”
She said it’s not a fair outcome as it does not apply for every disabled child and is also a postcode lottery.
“I know for a fact it is not applying to children with Stanley's disease in other counties,” she said.
The author of the petition, who the Packet has tried to contact through Change.org but who has yet to respond, says the decision directly threatens the quality of life and dignity of the most vulnerable children.
“The continence products currently provided by the council are not a mere convenience, but a necessity that safeguards the health and wellbeing of many disabled children in our community,” they say.
“Discontinuing this support is not just a financial issue, but a matter of basic human rights. It poses a safeguarding risk, which could lead to increased health issues, social isolation, and emotional distress for vulnerable children. Some families will be unable to purchase adequate continence products on their own.”
According to the NHS, around 900,000 children in the UK, or about one in 12, from five to 19 years old, suffer from bowel and bladder issues (NHS England, 2018). Continence problems are even more prevalent within disabled communities.
“I would like to call upon Cornwall Council to reconsider this devastating decision,” says the petition author.
“We urge the council to uphold their duty of care towards the most vulnerable in our society.”
In response Cornwall Council issued a lengthy statement saying that current guidance states that the provision of continence products for children without a medical diagnosis of bladder or bowel disfunction is not considered best practice and should not be seen as a suitable long-term solution.
“The emphasis should instead be on toilet training,” it said “which is why the council has decided to cease the discretionary provision of continence products for this cohort and refocus on early intervention and support workshops for families to address the underlying causes.
“We know this decision will be difficult for families, but the role of our public health nurses is to support toilet training where possible rather than encourage a reliance on continence products.
“Across Cornwall, we have introduced toilet training clinics in two areas on a trial basis. Both have proved hugely successful, and the clinics will now be rolled out more widely.
“We have also identified ‘continence champions’ in our service who can offer additional support and training to health visitors and school nurses when required.”
Every family will receive a letter informing them that the council will no longer be the provider of continence products from September 2025.
All families will receive a review with their named health professional to review their options and see if toilet training can be supported or any necessary referrals should be made.
“We continue to work closely with the NHS bladder and bowel service so that appropriate referrals can be made for those children where toilet training is not possible,” said the council.
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