'Hell' for mum after NHS gluten free food for son with cerebral palsy stopped

Chantal Chaervey

Harry and his mother Chantal, who has been struggling to get the specific brand of food his son requires - Credit: Chantal Chaervey

A Suffolk mother has described the past month as 'hell' after not being able to get her son, who has cerebral palsy, the diet he needs because his NHS gluten free provisions have been stopped.

Chantal Chaervey is a full-time carer for her son Harry and she has been struggling to find the specific sort of brand of bread her son can eat, as it is often out of stock or available only as an expensive bulk order.

Harry, who also has several allergies, is no longer eligible for gluten free provisions from the NHS because they are only available for people under 19.

Cerebral palsy

Chantal described the rule as 'complete and utter negligence' - Credit: Chantal Chaervey

She said: "Genuinely it's been hell. When you're caring for someone and you can see the frustration on them because you can't give them what they would normally have.

"You're scared stiff as to what the effect will be but you have no choice to try it."

Harry is lactose, glucose, wheat and fructose intolerant and Chantal said he "blisters before your eyes" when given the wrong bread.

With Indian flat bread he couldn't even chew it because of his cerebral palsy.

Most Read

"I do agree with the withdrawal of products from certain people because being a full time carer, you're always hearing of people who abuse the system that always goes on," Chantal added.

"To take a blanket decision without looking at the clinical diagnosis and the importance of what that means, that really does go against the oath that they swore to uphold."

Chantal Chaervey

Harry is kept to a strict diet to maintain his general health - Credit: Chantal Chaervey

This week a neuro physio told Chantal that it looks like her son is going to lose all his mobility imminently.

She says this will put more pressure on his digestive system, which now is being further aggravated, and his breathing system.

A spokesman for NHS Ipswich and East Suffolk and NHS West Suffolk clinical commissioning groups, said: “Gluten-free products on prescription for people aged 19 years and older have not been provided in east and west Suffolk since January 2016.

“There are many naturally gluten free alternatives to bread and pasta to maintain a healthy diet. There is also a huge range of gluten-free foods now available, with every major supermarket chain offering a good variety of reasonably priced gluten-free products.

“When gluten-free food was difficult and expensive to source, people with coeliac disease could expect to receive a prescription for certain foodstuffs. Today, gluten-free food is widely available and is sold at prices that are considerably lower than the NHS is charged."

Become a Supporter

This newspaper has been a central part of community life for many years. Our industry faces testing times, which is why we're asking for your support. Every contribution will help us continue to produce local journalism that makes a measurable difference to our community.

Become a Supporter