BLENDED DIET FOR TUBE FED CHILDREN IN THE UK
Next Steps for getting Blended Diet into Schools
So, with perseverance, you have the dietician supporting you. Next comes the second biggest hurdle, schools and their insurance companies. This is for MS and SN schools.
The Importance of the EHCP (Education, Health and Care Plan)
The first thing to do is to get Blended Diet written into the EHCP. It must be specifically named as food and not medical formula. Once it is in black and white the school must abide by the EHCP. You may still get some resistance or (if it’s not in the EHCP) refusal.
Schools, especially MS, are very anxious about litigation and tend to want to be very cautious. They are highly risk aversive and are often advised by school insurers not to take on anything in any way they feel is risky. To have the dietician on side at this point is a great asset. Their risk assessment and support of you will be a huge factor in getting BD accepted, as they will have done all the hard work for the school in terms of risk.
The paediatric community nurse is someone who can pull all the different strands together and represent the dietician (if not available), the hospital, the doctors dealing with your child, and you. They can talk through the issues school and the insurers are concerned about. They should support you if the dietician is supporting you. Your child should have a Health Care Plan which includes feeding choices.
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A safeguarding meeting which includes the insurer, teachers, dietician and parent would be worth looking at trying to arrange. Safeguarding is not in this sense about child abuse. The issues could be gone through and if the EHCP is going to be amended then the school is not there to question why a particular feed is being given (in this case BD) but is there to implement recommendations that the dietician has supported.
If it is in the EHCP as Blended Food then that is what they must give. If it states medical formula then that is what they must give. The insurers and the schools are unlikely to consider giving BD if something else is in the EHCP, the insurers regard it as too risky in many cases, to do something that appears to be against medical advice. I cannot emphasise enough the importance of this.
This is a link about EHCPs which came into force in September 2015.
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Your local council will also have information about EHCPs such as this one.
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If for any reason you cannot get the EHCP amended or there are other unforseen difficulties there are other avenues you may need to go along to persuade the school to assist you and to convince the insurers they need to support the school.
A very valuable document about ‘Supporting Pupils at School with Medical Conditions’ has persuasive arguments as to why your school should support and feed as you and your dietician are advocating. It contains advice and guidance (which can’t be legally ignored).
The School Insurance Issue
IPSEA
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Independent Parental Special Education Advice
This website is brilliant and easy to navigate. Loads of important information and guidance as well as an advice line. If you have any queries I would recommend asking them as they can point you towards the help you need.
IPSEA has hundreds of free and downloadable website resources to help families get the right education for children and young people with all kinds of special educational needs and/or disability.
You can access these resources via our Home page. We have model letters, frequently asked questions, a jargon buster and lots more.
IPSEA's trained volunteers give free, legally based independent advice and support in England to help get the right education for children and young people with SEN/disability.
Insurance will be an issue with schools and may be quoted as a reason they cannot do BD. The above guidance states:
Insurance policies should provide liability cover relating to the administration of medication, but individual cover may need to be arranged for any healthcare procedures. The level and ambit of cover required must be ascertained directly from the relevant insurers. Any requirements of the insurance, such as the need for staff to be trained, should be made clear and complied with.
The insurers cannot I believe prevent the child having BD or anything else, which is in the EHCP. When BD is supported by the hospital and the dietician, covered by a strong risk assessment then they should have no choice.
Some children with medical conditions may be considered to be disabled under the definition set out in the Equality Act 2010. Where this is the case governing bodies must comply with their duties under that Act. Some may also have special educational needs (SEN) and may have a statement, or Education, Health and Care (EHC) plan which brings together health and social care needs, as well as their special educational provision. For children with SEN, this guidance should be read in conjunction with
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For pupils who have medical conditions that require EHC plans, compliance with the SEND code of practice will ensure compliance with the statutory elements of this guidance with respect to those children.
That last paragraph is saying schools and therefore their insurers, must comply with what is in your child’s EHCP, so it is vital it is written there to prevent a lot a delay and distress.
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If you have tried everything don't hesitate to get legal advice. The Coram Children's Legal Centre has been very helpful to some of our blending parents.
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There is a huge amount of legislation and government guidance for schools regarding all aspects of SN. ‘Every Child Matters’ has one of its aims that children should be healthy and this would include giving food it this has contributed to good health. Another is to attend and enjoy school, which would not be possible if you are having to remove them daily to feed outside school, or the child is sick every day and consequently tired.
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There is something called ‘Team around the Child’ when a meeting of all those involved in your child’s care discuss important issues, and feeding would be one of them. It has the advantage that you are not duplicating things, repeating yourself, messages getting missed, or misunderstood. It should also appoint a Key Worker, like a social worker or the SENCO who can coordinate things.
The National Service Framework for disabled children etc promotes inclusion, being involved in decisions about health care and so on. Worth reading through the relevant sections as quoting anything official may be helpful.
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. Syringes already drawn up. Cool bags. Arrangements to allow the food to come to room temperature without any risk of microbial contamination. Ideally a one for one swap (a syringe of BD instead of a syringe of formula). Talking to the child’s TA or teacher to reassure them it isn’t as outlandish as it sounds.
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.
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