A mum-of-three has slammed a global baby company for its uncaring response after she appealed for some flexibility on buying products for her disabled son.
Kellie Barker, 45, contacted Nuby UK to raise the issue of the lack of support for parents using bottle teat products for children with disabilities and how, as a possible life-long cost, the company should be more inclusive.
Kellie is mum to nine-year-old Oscar who is severely autistic and has eating disorder Arfid which manifests as negative feelings over the smell, taste or texture of certain foods.
For Thanet Riding for the Disabled member Oscar this means he will only consume food from a bottle and is prone to chewing the teat which he will not then re-use because of the texture.
Oscar survives on build up drinks but will sometimes stop eating altogether, leading to dramatic and dangerous weight loss, putting a lot of pressure on his internal organs as he has no visceral fat and could result in the need for tube feeding.
Kellie contacted Nuby UK to explain she was going through more than 20 teats a week at a cost of around £6 for two and will likely need to buy the teats for lifelong care of Oscar.
But the company responded initially with a 10% discount offer, then 25%, and also suggested she join the baby club.
Kellie, who runs Born Anxious clothing promoting understanding of autism, said: “I contacted Nuby and explained the whole situation, that this was potentially life-long, it is really expensive and there are stock issues.
“They offered a 10% off one-time purchase and said join the baby club.
“Oscar is not a baby, he is nine and disabled and I was asking them to validate his needs. They are a leading manufacturer and there must be lots of special needs children that use these teats but they just didn’t think we were important.
“Why don’t they have a recycling scheme, the teats aren’t even biodegradable.
“I wasn’t happy, I was offended, Oscar is a disabled child, and they were talking about him as if he is a baby. I escalated my complaint and they then offered a 25% discount but as their products are more expensive than Boots that doesn’t really help either.”
Kellie says the multi-national company is missing an opportunity to show it is supporting children with special needs.
Oscar, who lives with mum Kellie, dad Brendan, sister Orla,20, and brother Lorcan,14, is under the care of Green Banks Centre for Disabled Children and has multiple needs.
Kellie said: “Oscar is severely autistic and has an eating disorder. He is under Evelina Hospital in London for multiple things.
“He is really orally sensitive. He only eats build up drinks and will only drink out of a bottle, He is not verbal and is led by visual symbols. It is very complicated and we do not really know what his development will be, he might drink out of a bottle for the rest of his life. We have tried to work with occupational therapy to get him on to a cup but in his mind it is the bottle or nothing.
“He doesn’t really have muscle memory to drink from a cup and it is all about how he feels, with the bottle he will chew and drink and we have to be led by what works for him.
“There are about 200 calories in each drink, Oscar has had times when he will starve himself because of his eating disorder which is not led by body dysmorphia and is about messages from his brain.
“He once ate a quarter pounder on holiday in Spain but he has never had one since and doesn’t remember because every time he eats it is like it is brand new and his brain tells him no.
“It’s so important to us as parents to know Oscar is healthy as he can’t tell us and doesn’t know if he is hungry as his brain doesn’t receive the messages. He can decide he doesn’t want to eat because of sensory issues and this can last for up to two weeks. The only way to keep him healthy and out of hospital is for him to drink his build up drinks”
Kellie compares the feeling of eating for Oscar to someone being told to just put a ‘big hairy spider’ in their mouth and says the build up drinks are the only way to make sure he is getting vitamins.
She added: “One of the problems is that the bottle he liked have been discontinued so we have to get them on ebay . The teats are £5.50 for two in Boots or we can go online and get ten at a time and once he has chewed them he won’t use them again.
“It is a health need, these drinks keep him alive, but there is no subsidy for the bottles and they aren’t always in stock.
“Services for disabled children are shocking, even Oscars 1-1 has been taken away which means his school now has to meet that need.
“As a multi-national company Nuby could give 50% off and advertise how they support children with special needs.”
Kellie says Oscar, who likes CBeebies and Pokémon figures, and other disabled children are long-term customers and so they should be accommodated.
She added: “It was insulting, they were unthoughtful and just wanted me to go away.”
The Isle of Thanet News made attempts to contact Nuby UK but is yet to receive a response.
