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, but I want as many links as possible to supporting evidence
This section is for parents and carers who are still having difficulty getting BD into schools. It’s the same whether its MS or SN school, although there are different experiences with both. Some have more difficulty with SN because there is usually a nurse there all the time who will take charge (give or oversee) the feed. Sometimes it is harder for the nurse to do BD because she has no professional guidance on this. She is a practitioner in her own right so what the dietician says may not be enough to cover her legally. A nurse under these circumstances may want to give the BD but is wary of the consequences if anything goes wrong. It’s worth asking if a nurse in these circumstances can contact her professional body (NMC) and ask for clarification. It may be more difficult in MS because TAs and teachers are not used to seeing medical devices of any kind and I have come across the attitude that to even get a tube fed child into MS will be an achievement, let alone with an unconventional feeding method. However MS schools are full of people who don’t feel the need to medicalise everything and can use commonsense thinking.
The British Dietetic Association is the professional body for dieticians in the UK. It is not a governing body so cannot instruct deiticians in their practice in a way that is legally binding on them. What they do is to look at the latest research and use this to give guidance to their members. This is why we see such divergence in dietician's practice. Some very open minded and supportive, some quite obstructive. If you have concerns they can be raised here:
https://www.bda.uk.com/about-dietetics/what-is-dietitian/raising-concerns.html
Before I get onto the school, the matter of dietician support is probably the most important. The dietician should hopefully support your choice as that is what their latest guidance states. This guidance is new in 2019 and is far more positive than the previous guidelines. I would personally say this statement is an amazing breakthrough after so much negativity around BD. It is worth printing out the guidelines and taking it with you to appointments if you are just starting BD or your dietician isn't very supportive.
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The Dietician and Dietetic Department
BDA Policy Statement 2019
The Use of Blended Diet with Enteral Feeding Tubes
Background
The use of blended food administered into an enteral feeding tube is commonly referred to as following a ‘blended diet’. Alternative descriptions exist including liquidised tube-feeds, blenderised food, liquidised diet and pureed table food (1). This mode of enteral tube-feeding has been met with caution, as some professionals raised concern that blended diet could be unsafe in comparison to commercially prepared enteral formulas (2). Professional consensus indicates use of blended diet has increased in the UK. Despite the perceived increase in use, blended diet has been under-researched. It is unclear if the perceived increase in risk (nutritional deficiency, feeding tube blockage and infection) is occurring or with significant frequency compared to those using commercial enteral formula alone.
Furthermore, research has suggested blended diet can have physiological benefits such as improvement in symptoms of vomiting, reflux and abnormal bowel habit (3-7). Robust research is needed to investigate why blended diet can have beneficial effects for some tube-fed individuals. In addition to physical benefits, social and emotional benefits have been reported by the parents and carers of tube-fed children and young people (3-7). In surveys, UK dietitians have reported variation in their ability to support families who have chosen blended diet due to a lack of clear professional guidance (8,9). This policy statement aims to support UK dietitians in clinical practice (in both paediatric and adult settings) to ensure tube-fed individuals receive effective, evidence-based, equitable and quality care. Further practical guidance and decision-making tools will be provided in an updated practice toolkit.
Purpose
The purpose of this statement is to:
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Create a culture where tube-fed individuals and their families and/or carers feel able to openly and honestly discuss the feeding plan they follow or plan to follow with the dietitians involved in their care.
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Create a culture where dietitians feel supported professionally, to raise the topic of blended diet with their patients and other healthcare professionals and offer blended diet as an option to tube-fed individuals where they deem it appropriate.
Recommendations
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The dietitian is the expert in enteral tube-feeding and should lead multi-professional discussions in relation to blended diet, in the best interests of the individual under their care. Dietitians can suggest blended diet as an option where they believe there to be potential physiological, social or emotional benefits to the tube-fed individual and their family.
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For the majority of tube-fed individuals, particularly those who are tube-fed, short term in hospital; the use of commercially prepared formula, designed specifically for enteral tube-feeding remains the first line choice.
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It is acknowledged that commercial formulas, irrespective of type or brand, are not tolerated by a small group of long-term tube-fed individuals. The reasons for this are not understood; the use of blended diet may provide clinical benefit in this patient group.
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The jejunum does not have the same food storage capacity or gastric acids, which protect against infection, in comparison to the stomach. Therefore, it is likely to be safer to administer blended diet into a gastrostomy rather than a jejunostomy.
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A shared decision-making approach to care, alongside employer’s clinical governance procedure should be followed by the dietitian (10). The dietitian should ensure families receive individualised information they need to enable them to make an informed decision. Consideration should be given to patients with complex medical conditions and those who may be immunocompromised. Planning and preparing blended diet requires a significant commitment and families should have realistic expectations of the labour and financial cost involved. The shared decision should be justified and clearly documented in the individual’s records by the dietitian.
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If a dietitian’s employer (trust or board) has a policy which specifically prohibits the use of blended diets, dietitians should adhere to it. This BDA policy statement cannot supersede an employer’s stated policy. However, dietitians should use this BDA policy statement and the evidence contained within it to encourage a change in any trust or board policy that prohibits the use of blended diets.
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For children >1-year-old and adults, blended diet can be used either as a sole source of nutrition or in combination with commercially prepared enteral formula.
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Blended foods should not be introduced before weaning age (around 6 months). Small amounts of blended food may be introduced alongside breast milk and/or infant formula in line with current recommendations for oral complementary feeding (11).
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Steps should be taken to educate the family to ensure blended diet is used as safely as possible. This should include advice on food hygiene and storage, enteral feeding tube care and education on a healthy balanced diet. The level of education and dietetic input needed should be tailored to the individual needs of the family.
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The dietitian should work with other professionals and agencies to facilitate the implementation of blended diet in all care settings attended by the tube-fed individual. For example, respite care, school or college. Ultimately, the decision to provide blended diet rests with the individual care provider.
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Families should be made aware that the provision of blended diet in the inpatient setting is dependent on the individual trust’s policy and food preparation facilities. Blended diet is less likely to be permitted in the ICU/HDU setting. Patients who are fed blended diet in the community should have a plan in the case of admission.
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Administration of blended diet is likely to be easier with some enteral tube-feeding devices in comparison to others. Further information regarding choice of enteral feeding tube is provided in the updated practice toolkit. However, individual manufacturers ‘information for use’ should be clarified when a decision is made to administer blended diet.
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The increasing prevalence of blended diet should be considered when reviewing enteral feeding contracts as this may have an impact on the service level in place.
Evidence Based Care and Effectiveness
Care for patients should be based on good quality evidence from research.
The National Institute for Health and Clinical Excellence (NICE) is responsible for providing national guidance on the promotion of good health and the prevention and treatment of ill health.
There is research to support formula feeding and there is less to support BD unfortunately. This is changing rapidly. Where possible I have linked it and Real Food Blends have compiled a list (below). However there is no evidence to say BD is inherently unsafe and there are no NICE guidelines on BD one way or the other. If there were then we would have very little chance of succeeding in schools and respite if it were negative. I’ve covered this on the previous page.
The Use of Blended Diet with Enteral Feeding Tubes. Parenteral and Enteral Nutrition (PENG)
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This lovely PDF document is so full of commonsense, backed up by science, and written by some lovely people I have met and (in a tiny way) worked with. Please read it if you can
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The Use of Blended Diet with Enteral Feeding Tubes (peng.org.uk)
Patient and carer experience and involvement
I think this part of clinical governance is also important and works in our favour. These are the areas that are important to us and I don’t think there is too much to be worried about. Parents and carers have the right to a major say in their child's care including feeding. Never forget you are the expert on your child.
The BDA Toolkit
The BDA accept people will want to try BD. Your dietician may not be aware of the toolkit so I have provided a link for you to guide them to it just in case.
Liquidised food via gastrostomy tube
Initially the BDA produced a policy statement addressing the growing demand by patients and carers for support to feed liquidised food through gastrostomy tubes. The advice remains that this is not the preferred method of feeding but that there are some circumstances where the clinical team including the patient or carers may wish to pursue this approach. The BDA recommends that when an individual, or their carer, is considering the use of liquidised food the Dietitian has a duty of care to ensure the patient/carer has had all the individualised information they need to enable them to make a fully informed choice
This toolkit has been developed by members from the specialist groups to help enable UK based dietitians to support their patients and provide practical recommendations on the use of liquidised foods via gastrostomy tubes. This will help to reduce variation in clinical practice nationwide and improve clinical effectiveness, minimise risks, improve patient outcomes and make recommendations for further research. Although there are numerous anecdotal reports from patients, carers and health professionals of potential benefits there is little published research available to support the use of liquidised foods for enteral tube feeding.
Therefore dietitians’ advice should take into account clinical position statements, risk assessment, patient perspective, physiological plausibility and the limited research evidence available regarding the risks and benefits.
The BDA Toolkit can be used to guide local policy making if required.
If your dietician is anxious about supporting your choice it may be worth showing them this article which shows that experience of actually doing BD is not as difficult as perceived.
Home enteral tube feeding in children following percutaneous endoscopic gastrostomy: perceptions of parents, paediatric dietitians and paediatric nurses (article)
https://pubmed.ncbi.nlm.nih.gov/17845377/
Research Great Ormond Street Paediatric Gastroenterology Department et al
Some research into Blended Diet. Not totally on board yet, but grudgingly admits there are improvements and improved parent experience. An awful condescending phrase, because parents are only happy if their child is doing well, not because they are simply blending food.
The dietician and the dietetic department is the biggest hurdle so it’s important to work together where possible. They are showing their concern for your child by doing what they believe is in their best interest, and to many this is the formula route. It may be worth trying a few different ones as many children will tolerate an overnight formula and these are worthwhile for weight gain in the short term. If you decide you have gone as far down the formula route as you can or you do not want to give formula and your dietician isn’t supportive, ask to speak to her/his department head. It’s worth stating your case to a different person. If that doesn’t work then you will need to take it to the complaints route. The starting point here is PALS (Patient Advice and Liaison Service)
http://www.nhs.uk/choiceintheNHS/Rightsandpledges/complaints/Pages/AboutNHScomplaints.aspx
This Link will take you all the way to the end and will, I hope, get the result you want. Your complaint will be that you are being unsupported in your choice of feeding despite the BDAs guidance that you should be given that support. The reasons you wish to feed in a different way. All the evidence you have obtained. The affect on your child and anything else you feel is relevant.
