Blended Diet in Schools and Respite Care

Meeting the Risk Assessment Criteria

Things are changing

Getting blended diet accepted in a school, nursery or respite setting can still be one of the biggest hurdles for families.

Things have changed enormously since Elliot started BD. What once felt like a battle simply to get people to consider blended food is becoming a much more ordinary conversation.

That doesn't mean there is nothing to sort out. Schools and respite settings have to be confident that they can provide your child's feeds safely, consistently and within their own procedures.

The good news is that most of the concerns can be broken down into practical questions and dealt with one at a time.

Try to get your dietitian and enteral feeding team involved from the beginning.

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 blended diet.

Our current dietitian phones to check his weight and asks a few questions about his health. That's it.

Your experience may be different, but things really have changed.

The BDA's guidance recognises the importance of working with other professionals and agencies when blended diet is being provided outside the home.

Start with your clinical team
Find out what the school's actual concerns are

Sometimes a school may have several concerns at once. Ask them to identify them individually.

They may be worried about:

nutrition
food hygiene and storage
tube or button blockage
equipment
how the feed is administered
staff training
what happens if something goes wrong
what happens if your child is unwell
who is responsible for preparing or providing the food
whether there is an agreed plan for school and respite

Once you know what the concern actually is, it becomes much easier to address it.

You don't need to arrive with a huge folder of research and fight every objection before anyone has even asked the question.

Work through the concerns one at a time.

A clear care plan helps everyone

The school or respite setting should have clear written instructions for your individual child.

This might include:

what food your child receives
how much and when
how it is administered
equipment required
water and flushing arrangements
storage and handling
what to do if the feed cannot be given
what to do if the tube becomes blocked
what to do if your child becomes unwell
who to contact with questions or problems
staff training and review arrangements

The details should be agreed with the child's clinical team and the setting.

Food safety, storage and administration are covered in more detail here →

Food hygiene

Blended diet does require careful food hygiene, preparation and storage.

This is not a reason to assume that blended diet cannot be provided at school. It means that everyone involved needs to understand how the food is prepared, transported, stored and administered safely.

I did a food hygiene course myself when Elliot started BD and found it extremely useful.

I'd still recommend that parents learn about food hygiene — not because BD is inherently dangerous, but because knowing what you are doing gives everyone much more confidence.

See Food Safety, Storage & Administration →

Tubes, buttons and blockages

Tube blockage is a genuine consideration, particularly with thicker blended food, but it can be reduced by appropriate preparation, equipment and technique.

The type of tube or button your child has also matters.

We've covered tube pressure, blockages and equipment in more detail in Facts & Fallacies, so you don't need to repeat all of that information here.

See Facts & Fallacies →

What about legal responsibility?

Schools and healthcare professionals understandably have responsibilities for children's safety.

The answer isn't to pretend that there are no risks. It is to identify the risks and agree how they will be managed.

A good individual care plan, appropriate training, clear instructions, good food hygiene and communication between the family, clinical team and school can make a huge difference.

A disclaimer should never be regarded as a substitute for proper care, training or safe procedures.

Get the school on your side if you can

This is probably the most important piece of advice I can give.

The people actually feeding your child need to understand what they are doing and why.

The gastro/enteral nurse can provide training on the equipment and feeding procedure. The SENCO or equivalent can help coordinate the arrangements. Teaching assistants, support workers and other staff may become very familiar with your child's routine.

And they may see the difference themselves.

When Elliot was vomiting every day after his formula at lunchtime, my daughter went into school for three weeks and fed him his blended diet.

The difference was immediate — both in his vomiting and in his energy levels.

The SENCO was instrumental in the meeting with the school and dietitian. She essentially asked:

If the blended diet is working, why try yet another formula?

That was a really important moment for us.

If things don't go smoothly

If the school is reluctant, don't assume that the answer is simply “no”.

Ask what the problem is.

Talk to the clinical team. Involve the appropriate school staff. Ask whether someone with experience of blended diet can help.

If you still cannot resolve the situation, you can ask for the matter to be discussed by a more senior clinician or manager and, where appropriate, use the organisation's formal concerns or complaints process.

But hopefully it won't come to that.

The aim isn't to win a battle. It's to make a safe, workable plan that allows your child to be fed in the way that has been agreed for them.

PENG (The Parenteral and Enteral Nutrition Group) Risk Assessment

The PENG risk assessment was an important tool used by dietitians and families when blended diet was less familiar. I've kept the material here because it remains useful for understanding the issues that need to be considered when planning blended diet at school or respite

PENG TEMPLATE number one Hazard I believe most parents are reasonable people who want to work with their dietitian. Consequences Risk of malnutrition – If your child is already underweight on formula, nutrition needs to be carefully monitored whatever feeding method is used. If they tolerate BD, a gradual switch can help avoid volume-related problems such as vomiting and abdominal discomfort.

PENG TEMPLATE Number two Hazard I have discussed above the need for hospital admission if a PEG is blocked, but blockages can occur with formula if tubes are not flushed, and with medications. Some medicines, including omeprazole preparations, can be particularly problematic. I do believe we should do everything possible to avoid blockages though.

PENG TEMPLATE number three Hazard Food between 8°C and 63°C can allow harmful bacteria to grow, but the risk depends on both temperature and time. Consequences I've covered food safety and storage in my new section on the Facts page.

PENG TEMPLATE Number four Hazards Good food hygiene standards are needed to feed any child. Reusable equipment, tubing etc. can become contaminated with either formula or BD if they are not cleaned properly. Consequences Children who are immunocompromised may need additional precautions, and this should be discussed carefully with the clinical team before starting BD. Stoma and skin infections can occur with any type of tube feeding. Good hygiene and prompt attention to signs of infection are important regardless of whether the child receives formula or BD.

PENG TEMPLATE Number five Hazards If a Risk Assessment is carried out carefully and appropriate support and training are provided, many of the practical concerns around BD can be managed. Consequences There may be additional time needed initially to assess and establish BD, particularly where nutritional support or training is required. Once a child is established and their nutritional intake is being monitored, ongoing review should be part of their normal clinical care. Some families may find that they need less equipment over time, while others will continue to use pumps or other equipment. Good support and appropriate equipment can help families manage BD successfully. A high-speed blender is an important piece of equipment for many families using BD.

PENG TEMPLATE Number six Hazards Food-borne infections can occur with BD, which is why careful food handling, preparation and storage are important. Good food hygiene is essential when preparing food for any child. Consequences A stoma infection can occur with any type of tube feeding. If a severe infection caused the tissues around the stoma to break down, serious complications including peritonitis could occur. This is why prompt recognition and treatment of infection is important, regardless of whether a child receives formula or BD.

The EHCP and feeding arrangements

If your child has an Education, Health and Care Plan (EHCP), it is worth discussing their feeding needs when the plan is being prepared or reviewed.

If blended diet is an important part of your child's agreed care, ask whether the feeding arrangements should be clearly recorded in the EHCP and/or the child's individual healthcare or feeding plan. Your dietitian and other members of the clinical team can help with this.

An EHCP can include health provision where it is considered necessary to support a child's special educational needs. It does not, however, automatically give a child a legal right to blended diet specifically, so the wording should reflect your child's individual assessed needs and the provision that has been agreed. At this point I would push as hard as you can to get your feeding method included.

Your child should have an individual healthcare/feeding plan that clearly explains their agreed feeding arrangements for school.

IPSEA provides useful information about EHCPs and can offer independent advice to parents.

EHCP INFO.

Preparing and sending blended food to school

When BD is being given away from home, preparation, transport and storage need to be planned carefully.

Food should be prepared using good food-hygiene practices and transported and stored according to the agreed feeding plan and current food-safety guidance.

Make the process as straightforward as possible for school staff. For example, agree in advance how the food will be transported, stored, brought to the appropriate temperature and administered.

The school should have clear written instructions so staff know exactly what to do and what to do if there is a problem.

What about insurance?

Schools may raise insurance as a concern when blended diet is unfamiliar to them. If this happens, ask what their insurer actually requires rather than assuming that insurance prevents BD from being provided.

Appropriate training, a clear individual feeding plan, agreed procedures and good communication between the family, school and clinical team can help address these concerns.

If there is uncertainty about insurance requirements, the school should discuss these directly with its insurer.

If School Insurance is brought up or if you need further information IPSEA (Independent Provider of Special Education Advice) can advise.

IPSEA SUPPORT

Please feel free to copy and paste these templates

Example School / Respite Blended Diet Care Plan

Why use an agreement like this?
This isn't a legal disclaimer and it doesn't remove anyone's responsibility for the child's care. It is simply a way of putting the agreed arrangements in writing, so that parents, school or respite staff and the clinical team all know what is expected and how the child's blended diet should be given safely. Clear instructions and agreed responsibilities can make everyone feel much more confident.

This is an example only. It should be adapted for the individual child and agreed with the family, care setting and relevant clinical team.

Then I'd tidy your original into this:

GUIDELINES AND PROCEDURE FOR GIVING HOME-PREPARED BLENDED FOOD TO __________

__________ receives home-prepared blended food through their gastrostomy. This has been agreed as part of their individual feeding plan following discussion with their parent/carer and clinical team.

The following arrangements have been discussed and agreed between:

Parent/carer: __________________________
School/respite setting: __________________
SENCO/appropriate staff member: __________
Dietitian/clinical team: ___________________

A separate feeding care plan detailing the times, amounts and procedure for feeding will be kept at the setting. It should be reviewed regularly and whenever the child's needs change. All staff who administer the feed should be appropriately trained and follow the agreed care plan.

Agreed arrangements

__________ will receive home-prepared blended food supplied by their parent/carer.
Food will be provided according to the agreed feeding plan.
The food will be prepared, transported and stored according to the agreed food-safety arrangements.
The feed will be given using the agreed equipment and procedure.
Water and flushing arrangements will be as specified in the feeding plan.
If blended food is unavailable, the agreed alternative feed will be provided.
The parent/carer and clinical team will provide information about the child's nutritional requirements and any allergies or intolerances.
Any changes to the child's nutritional or feeding requirements will be communicated to the setting and the feeding plan updated.
The child's nutritional status will be monitored by the clinical team at appropriate intervals.
Any problems with feeding, the gastrostomy, equipment or the child's health will be reported according to the agreed procedure.

Responsibilities

The family, school/respite setting and clinical team will work together to ensure that the agreed feeding plan is understood and followed.

The setting is responsible for ensuring that staff who administer the feed have appropriate training and follow the agreed procedures.

The parent/carer is responsible for providing the agreed food and communicating any relevant changes or concerns.

The clinical team will provide appropriate nutritional and clinical advice and review the child's needs as required.

Review

Date of next review: ______________________

Parent/carer: _____________________________

School/setting: ___________________________

Clinical team/dietitian: ____________________

Date: ____________________________________

This is a Template for parents to send into schools so that their normal procedure for feeding their child can be continued. The school nurse or community nurse should give training, but this just ensures continuity for your particular child.

PROCEDURE FOR ADMINISTERING BLENDED FEEDS TO ....................

Requirements:

1 meal. Provided in 3-4 60 ml syringes ready drawn up.

Food will be of a ‘sandwich’ type meal or one containing low risk ingredients, and also a fruit snack type meal.

Cool boiled water for flushes

1) Wash hands with warm water and soap, and (if required) put on disposable gloves

2) Prime extension tube with water before attaching extension tube to ............. gastrostomy

3 Attach syringe to extension tube, and gently push the food into the gastrostomy. Hold the catheter tip connection on tightly as the thicker food makes disconnection more likely and food will go everywhere.

4) Give over 20 minutes approx 20 mls at a time until all the food is used up

5) Flush the tube with 20 mls of water to clean the tube.

TROUBLE SHOOTING

If food will not go down the tube:

Check the clamp on the extension tube has been released
Check for a blockage of food particles at the end of the syringe
If there is no obvious blockage, try flushing the tube with a small amount of water
If there still appears to be a blockage, reattach syringe and try gently drawing back a small amount of food- discard and try again
If there is no success with these, contact Mrs .......or Mrs................
If the food does not come out of the syringe, disconnect and try drawing back to allow air in and shake.This is unlikely. If there is a problem give the formula food provided or contact Mrs............

Risks:

Blockages- by following the procedure and advice outlined here, blockages should be easily eliminated. However, due to the nature of the foods, or insufficient flushing, blockages may occur.
Infection- Correct hygiene procedures should be followed in personal hygiene and preparing of the food and equipment to minimise the risk of infection

Review at yearly intervals.

Further articles to support Blended Diet in Schools and Respite

Blended foods for tube-fed children: a safe and realistic option? A rapid review of the evidence

This 2017 review is useful historical reading because it captures the debate around blended diet at a time when the research base was much smaller. It identified possible benefits while also highlighting the uncertainties around safety, nutrition and practical issues.

Read the review →

Together for Short Lives – Blended / Liquidised Table Food: Questions & Answers

A practical Q&A document produced with input from dietitians, children's hospices and NHS professionals. It covers some of the questions that can arise when families and professionals are considering blended or liquidised food via gastrostomy.

Read the Q&A →

Q & A

Read

Further Support

Your Local Authority has an SEN co coordinator (or similar). Make an appointment to discuss your issues with getting your feeding choice into school.

The school nursing service will be made aware of a child with medical needs in their school, and it may be worth talking to them about your choices. They can then support the TAs who will be the people usually giving the feeds.

Make giving BD as simple as possible for the school TAs. Syringes already drawn up. Cool bags. Arrangements to allow the food to come to room temperature without any risk of microbial contamination.

Most problems can be resolved by talking things through with the people involved in your child's care, but occasionally you may need some additional support.

If you are having difficulty with the NHS or clinical team

Start by asking what the specific concern is and whether it can be addressed. It may help to involve a senior member of the dietetic or clinical team, particularly if the person supporting your child has little experience of blended diet.

If you are still unable to resolve your concerns, you can use the NHS feedback and complaints process. PALS (Patient Advice and Liaison Service) can provide confidential advice and help you understand the options available to you. You can also ask about independent NHS complaints advocacy.

If you are having difficulty with school or education

Schools and other education providers have duties under the Equality Act 2010 towards disabled children, including making reasonable adjustments where appropriate. An Education, Health and Care (EHC) plan can also set out the additional support a child needs where they meet the relevant criteria.

This does not mean that a child automatically has a legal entitlement to receive blended diet at school. However, if feeding is an important part of your child's health and care needs, it may be worth discussing with the school, your clinical team and, where appropriate, the local authority.

If you need impartial advice about special educational needs or an EHC plan, organisations such as IPSEA can be very helpful.

NHS - CONTACT PALS

If you need to take things further

Legal advice is not normally the first step. Try to resolve the practical issues with the family, clinical team and school first, and keep a record of the concerns raised and the responses you receive.

If you believe your child may have been discriminated against, or that their health or educational needs are not being properly considered, you may wish to seek specialist advice about your particular circumstances.

Things have changed enormously since Elliot started blended diet. Most families should not have to fight simply to have a conversation about it. But if you do encounter a barrier, don't be afraid to ask questions, seek another opinion and get appropriate support.

IPSEA INFO ON EHCP

Put simply, get the dietician and the hospital supporting you even if you need to go down the complaints route.
Get letters of recommendation from your Community Paed and the gastroenterologist if possible
Get the blended diet specifically written into the EHCP
Talk to the schools and their insurers. Be well informed and reasonable
Cross fingers and toes
I have tried to ensure this information is as accurate as possible but it will not fit every situation. I hope however, you will be able to use some of the resources I have linked to persuade the schools and establishments to help you. If you have any information which has been useful to use I would love to hear from you.