Cerys had a gingerbread biscuit today. She is two and really liked it. Our daughter has Cerebral Palsy after a severe HIE incident post-birth. She can’t swallow and has been relying on a feeding tube since birth. The ginger biscuit was inside a smoothie, blended to a smooth runny mix with almond milk, banana and blueberries. Yum.
Currently the NHS and all other healthcare providers do not endorse a choice of what you feed your child or adult dependent who rely on a feeding tube. Food-choice is something for people who can swallow it seems, but not those who are unable to safely swallow their food. Instead everyone is automatically put on a regime of medicated formula milk and a range of medications to help ‘keep it down’.
Side effects of the ‘formula milk only’ diet include reflux, constipation, trouble sleeping and concentrating etc.
Over the past few years a grassroots movement is gathering momentum in the UK - a group of mums who feed their children ‘real food’, simply blended to a smooth and runny consistency so it easily goes through a feeding tube. The beauty of a tube is that there is no taste of the food as such - a lovely little side effect that allows us to give our children the best possibly nutrition without having to ‘disguise’ the really healthy things.
My name is Julia and I am one of these mums - and this is why Cerys had homemade ginger biscuits in her smoothie - because it was Christmas and I would give her one if she could eat normally.
Unfortunately it’s only me who can do this so far, as any carer, nurse, teacher etc is not allowed to administer a Blended Diet as such.
This is due to regulations driven by the pharma industry information available, namely that nothing else than medicated formula milk is to be put through a feeding tube. (Now think about it - those who gain from medicated formula sales are forming life-changing decisions for thousands of children and adults - stating reasons that have barely been researched or tested…)
Something needs to change.
I have therefore started a campaign to petition the government, the NHS, the UK healthcare providers, the British Dietics Association etc to acknowledge the Blended Diet as appropriate way of nourishing someone with a feeding tube and most importantly to give everyone a choice about what they are eating.
Please may I ask for your support by way of a signature at change.org to support our ongoing petition.
Many thanks! For those who are familiar with the Blended Diet and are practising it as such - it would be wonderful to get your personal experience by way of our big Blended Diet Survey, which will help create important statistical information and figures that should help us with the ongoing campaign. Huge thanks for your help on this.
You can also share your experiences of the blended diet and get in touch with Julia on this thread.
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