BLENDED DIET FOR TUBE FED CHILDREN IN THE UK
Next Steps in Getting Blended Diet accepted in School and Respite
If you still have problems getting blended diet into school, hopefully these tips will help. If you need to use the information on this page I apologise it's a bit heavy going
Getting Blended Diet Accepted at School or Respite
Getting BD accepted into school, nursery or respite can be one of the more difficult parts of the journey. Thankfully, things have changed considerably since we started.
The current BDA position recognises that blended diet may be an appropriate option for some tube-fed children and says that dietitians should work with other professionals and agencies to help implement it in settings such as school and respite. The individual care provider still has to agree to provide it, so a little planning is usually needed.
Start with your clinical team
Try to get your dietitian involved from the beginning if you can. Our first dietitian was initially a little sceptical, but she was open-minded and prepared to support our decision. She worked with us on the nutritional side and helped set out a timetable for getting Elliot's school to give his BD.
Our current dietitian mainly checks his weight and asks a few questions about his health. Once everyone is confident with the plan, ongoing support does not necessarily need to be complicated.
Your child may have a different clinical team, different equipment and different needs, so the plan should be individual to them.
Make a simple plan for school
The school or respite service will need to know:
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what food is being given
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how it has been prepared and stored
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how it should be administered
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what equipment is needed
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what to do if there is a problem
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who to contact if they have concerns
Food hygiene, storage and administration should be covered in the child's plan. See Food Safety, Storage & Administration for the practical details.
The aim is to make the process as straightforward as possible for staff. If parents can provide the prepared food in a form that is easy for the setting to manage, this can make the transition much easier.
If you meet resistance
Sometimes the difficulty isn't the school itself — it may be uncertainty within the healthcare team, a lack of experience with BD, or concern about responsibility if something goes wrong.
Try to understand what the actual concern is. Is it nutrition? Food hygiene? Tube equipment? Training? Storage? Or simply that the setting has never done BD before?
Once you know the concern, it is much easier to address it.
The BDA toolkit and other resources on this website can help provide information, but you don't need to arrive at the first meeting with a folder full of research unless you are asked for it! The situation is very different from when we started.
If you cannot resolve the issue, you can ask to speak to the relevant senior clinician or manager and use the organisation's normal complaints or concerns procedure where appropriate.
And remember...
You know your child better than anyone. Your observations and experience are an important part of shared decision-making.
You are not asking everyone to abandon formula or to agree that BD is right for every child. You are asking them to consider whether it is right for your child and, if it is, to work with you to make it as safe and practical as possible.
Things have changed enormously since Elliot started BD. What once felt like a battle is becoming much more ordinary.
The next step is getting the practical plan agreed with the school.
The Dietitian and Dietetic Department
BDA guidance
The British Dietetic Association (BDA) published its position statement on blended diet in 2019, followed by a practical toolkit in 2021. These resources helped establish blended diet as an option that can be considered for appropriate tube-fed children and adults.
The 2019 position statement is currently under review, so rather than reproducing it here, you can read the original document directly from the BDA.
The BDA is reviewing its blended diet guidance, and this page will be updated when the new guidance is published.
Evidence, Guidance and Your Voice
When I first created this website, there was considerably less research into blended diet and much more uncertainty about whether it should be supported. That has changed.
There is a much larger body of research now, particularly looking at gastrointestinal symptoms, tolerance, nutrition, quality of life and the experiences of children and their families. The evidence is still developing, and it is not perfect, but the conversation around blended diet has moved on considerably.
There is no evidence that blended diet is inherently unsafe. As with any form of tube feeding, there are things to consider — including nutrition, food hygiene, preparation, storage, tube equipment and the individual child's medical needs.
BDA guidance
The British Dietetic Association has produced guidance and a practical toolkit to help healthcare professionals support the use of liquidised food through enteral feeding tubes.
The 2019 BDA position statement and subsequent practice toolkit were important steps in moving blended diet from something many families were struggling to establish into an option that could be considered as part of individualised care.
The BDA's guidance is currently being reviewed. This page will be updated when the new guidance is published.
Parents and carers matter too
Clinical care should not be based on research evidence alone. The experience of the child and family is also important.
You know your child better than anyone. You see what happens every day — what they tolerate, what makes them comfortable, what causes problems and what helps them thrive.
That doesn't mean that every child should have a blended diet, or that professional advice should be ignored. It means that your experience of your child is an important part of the conversation.
The best decisions are made when parents, carers and healthcare professionals work together, look at the individual child, consider the available evidence and agree on a plan that works for that child.
And if you meet resistance?
Sometimes concerns are based on genuine clinical issues. Sometimes they come from unfamiliarity with blended diet or uncertainty about how to manage it safely.
Start by asking what the actual concern is.
Is it nutrition? Food safety? Tube equipment? Storage? Administration? Training? The child's medical condition?
Once you know the concern, it is much easier to discuss it and find a solution.Things have changed enormously since Elliot started blended diet. What once felt like a battle for many families is becoming a much more ordinary conversation. And that is exactly where we want it to go.
Working with your dietitian and clinical team
Your dietitian and clinical team are there to make sure your child receives safe and appropriate nutrition. They may have concerns about blended diet, particularly if they have little experience of using it, or they may feel that a commercial formula is the best option for your child.
Where possible, work together rather than against each other.
Ask what their concerns are. They may relate to nutrition, food safety, tube equipment, your child's medical condition, or simply a lack of experience with blended diet. Once you understand the concern, it is much easier to look at whether it can be addressed.
The BDA has produced guidance and a practical toolkit to help dietitians and other professionals support families considering blended diet. You may find it useful to share these resources with your clinical team.
If you and your dietitian cannot reach an agreement, you can ask to discuss the situation with a senior member of the dietetic team or another appropriate clinician. Sometimes a second opinion or someone with more experience of blended diet can help.
If you still feel that your concerns are not being properly considered, your healthcare organisation will have a formal complaints or concerns process. NHS England provides information about making a complaint about NHS services.
The aim should not be to win an argument about feeding. It is to make sure that the decision about how your child is fed is based on their individual needs, the available evidence, professional expertise and your knowledge and experience of your child.
Things have changed enormously since Elliot started blended diet. What once felt like a battle for many families is becoming a much more ordinary conversation.
