BLENDED DIET FOR TUBE FED CHILDREN IN THE UK
Blended Diet in Schools and Respite Care
Meeting the Risk Assessment Criteria
Getting what you want
Getting BD accepted into schools, nurseries and respite is one of the most difficult obstacles most people encounter. You may be lucky and brazen it out by going into the care setting and just saying ....this is how I feed my child, you need to do this, this and this..... and its just accepted and implemented!
Most people however are expected to jump through an awful lot of hoops to achieve their goal. Try though to get your NHS dietician on side. This is always the best policy. Our dietician was initially a little sceptical although very open minded and prepared to support us in our decision. She worked with us on the nutritional side and set out a timetable for getting Elliot's school to give the BD. Our current dietician phones to check on weight. Asks a few questions on health and thats it.
The biggest obstacle is usually the dietician and the policy of the NHS trust they work for, in many cases unfortunately. However things are rapidly changing and there is now much more awareness within the British Dietetic Association of BD. Risk assessments are now being made which cover the legal position of the Trust and the individual dietician.
They are also useful tools to equip the carer with a good knowledge of the risks as well as the benefits, and a read through the risk assessments before they are actually presented to you (so that you have all your answers!) is a good idea.
The button and PEG issue - Blockages
The Frekka PEG tube needs a trip to theatre and surgical replacement if it becomes blocked whereas the mic-key and the mini button can be easily replaced. This makes the PEG tubes much more difficult to get into schools because the dietetic department and the school will have a few unpleasant questions to answer if children are turning up for emergency operations on a regular basis, and they are extremely reluctant to put themselves in this position. I can see this from their point of view as it is also not pleasant for the child. The expense is also a factor. I don't know of any families who have managed to get PEGs accepted in schools etc but it still is worth trying. In our case we wanted a button anyway and we waited until this was put in before pursuing BD in school. Elliot meanwhile regularly vomited his formula in school at lunchtime. Once the button is in there is very little objection that can be made on the blockage front, so you are eliminating one of the objections.
The Food Hygiene Issue
Most families can produce food for their child without any serious health implications. Blended food is no different provided basic food hygiene standards are met regarding preparation and storage of food. I personally found it very easy to do an online course, level 1 Food Safety and Hygiene City and Guilds from the Virtual College, for around £16. Its very comprehensive and I would recommend it, not least because it is another reason that BD can't be refused. Its also useful regarding the question of storage, defrosting and time factors with food. I learned that cold food can be kept at ambient temperature for 4 hours. It means our blends can be defrosted overnight, stirred but not reheated the next morning, drawn up into 60 ml syringes and sent into school in a cool bag. It doesn't need refridgeration any more than the packed lunches the other children have, and by the time it is given it is at room temperature and not unpleasantly cold. Perfect for the school environment. There's no real need to do any courses provided you can fulfill the safety criteria in the risk assessment though. The dietician should be advising you here.
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Nutrition
This really just needs a commonsense approach and a reasonable ability to research a healthy diet which most parents manage without a lot of interference from dieticians! You know your child. You know their nutritional needs. You probably know their food intolerances if any, or their allergies. The Complete Tubefeeding Book (please get this book!) shows you how to test for allergies and what foods are risky. You know if your child is underweight and needs increased calories or if they have poor volume tolerance and need building up. A good multivitamin in liquid form can always be added for extra peace of mind but most healthy diets contain everything that is needed for older children although vitamin D in the winter months can help. Vitamin C in their free water is an easy way to ensure adequate amounts as it is a fragile vitamin and may be destroyed by heating, blending or freezing. Children up to the age of 5 are advised by government guidelines to have supplemental vitamins A, C and D. Only when the older child is on a restricted diet or has intolerances do you generally need supplements.
Mitigating Legal Action
This is the big drawback faced by many parents and their biggest hurdle. The health care professionals (HCPs) involved will have a very acute awareness of their vulnerability when it comes to patient safety and many are reluctant to consider BD for this reason. However they now have to consider parent choice and support that choice, although some won't tell you this. Litigation may be used to scare schools and care situations into not allowing BD on the premises. However the 'risk assessment' and a parent signed disclaimer exempting the school from responsibility if, for instance, the tube blocks, can be written out ( there is an example below). A disclaimer does not allow the school or anywhere else to fail in their duty of care and not give the food as shown. They can't for example, give food from the previous day which has been left out too long, or not use good hand hygiene.
Get the school on your side if you can.
The gastro nurse will have to show the school team how to set up and feed your child formula so the basics are in place. You need to talk to the school SENCO and the team looking after your child. TAs feed Elliot and are usually very sensible about child nutrition. Most non professional people can understand the commonsense idea of feeding a child food. They often also see the results of tube feeding BD. In our case Elliot was vomiting every day after formula which was horrible for everyone. My daughter went in for 3 weeks and fed him his BD and the difference was immediate both in terms of vomiting and energy levels. The SENCO was instrumental in our big meeting with the school and the dietician and said that if the BD was working then why try yet another formula!
Provided you can demonstrate you have abided by the terms of the risk assessment and are working with the dietican and the school to reduce any problems and are prepared to state your case, they should have no reason to refuse to support your choice.
I have gone through a list of the possible objections which fall outside the risk assessment and may be used to thwart your choice on the previous page because there as some people who seriously won't want to support you.
PENG (The Parenteral and Enteral Nutrition Group) Risk Assessment
This is the risk assessment template which most dieticians are producing for caregivers to complete. Its written (I think) in a quite intimidating style, but if you ignore that, its quite easy to complete I've just picked out a few points which are worth looking at in more detail and linked to this actual Risk Assessment rather than in general.
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Hazard.
I believe most parents are reasonable people who want to work with their dietician.
Consequences.
Risk of malnutrition - If your child is seriously underweight on formula, then he will already be malnourished. If he tolerates BD then a gradual switch to BD will avoid volume issues which do show themselves as vomiting and abdominal discomfort.
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Hazard.
Food between the temperatures 8C and 63C can begin to grow harmful bacteria but there are time limits which, if you stick to, make this not an issue. I'm not sure what the implication of these temperatures are in this context? ("Temperature control guidance is unrealistic with this practice")? If its saying food must be given below 8C or above 63C, then its quite absurd. I don't usually eat my meals like this and I certainly won't feed a child dangerously. I've already set out the safe administration of foods according to the Food Standards Agency and BD is simply food.
Consequences.
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) or with medications. Omeprazole being the worst culprit.
I do believe we should do everything possible to avoid blockages though.
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Hazards.
Good food hygiene standards are needed to feed any child. The reusable equipment, tubing etc, could become contaminated whether using Formula or BD, if not cleaned properly.
Consequences.
An immunocompromised child would need exceptional care, but this is the case regardless and should be discussed with the HCP carefully before embarking on BD or any feeding method, as sterile tubing is usually used and not reusable in these cases. The gut flora is more likely to return to normal if food rather than formula is used. BD has no influence on the integrity of the stoma. Skin infections may occur at any stage. They are due to the moist area under the button, bacteria that occur naturally on the skin and in the air, and sometimes the condition of the patient. There are no bacteria in foods that will cause skin infections likely to affect the stoma or surrounding skin.
I have addressed this part of the risk assessment further on
Hazards.
If the Risk Assessment is carried out carefully and support and training given, there should be an overall (and significant) cost saving to offset any additional costs.
Consequences.
Currently a lot of the dietician's time is taken up managing children who are not doing well on formula feeding. Multiple changes of formula, time assessing, hospital admissions, J tubes, pump feeds, fundoplications plus the high cost of formula feeding. Once a child is established on BD and a good nutritional intake is assured then the dietician can save time. Weighing and measuring children on BD should take place with the same frequency as other tube fed children. Enteral feeding devices like pumps, usually diminish on BD.
I do agree there may be a few parents who do not manage BD well initially, but with support any 'complications' can be managed.
Currently there is no question about providing high speed blenders.
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Hazards
Food borne infections can occur and are a slightly higher risks with BD but safe food handling techniques will mitigate this very small risk. The vast majority of parents do not routinely contaminate food when preparing family meals. BD will not cause a stoma infection. There is just no logic to this. Skin infections are caused by staphlococcal infections primarily and these live on the skin of everyone. Infections like moist, warm areas to develop, which describes a stoma fairly accurately.
Consequenses.
If a stoma became badly infected and literally broke down the integrity of the surrounding tissues then peritonitis (infection within the abdominal peritoneum) could ensue, but this would be because of the infection and nothing to do with BD or formula. Being sterile is irrelevant. Rapid identification of infection is vital regardless of the method of feeding.
DISCLAIMER TEMPLATE
Example of Disclaimer for school or respite
Date: Re: ..........
GUIDELINES AND PROCEDURE FOR GIVING HOME BLENDED FOOD to ......................
........... is fed home prepared blended food via his gastrostomy, after suffering digestive problems when using commercial enteral feed. This is delivered at ................school by appropriately trained classroom staff.
As this is an unusual practice, the following points have been discussed and agreed between Mrs........................ (.......... mother), ........(SENCO at .........School) and .......... (paediatric dietician) .....................Hospital
A separate feeding care plan detailing times and procedure for feeding is kept at school and reviewed at least yearly by the School Healthcare Nurses and Mrs.............., with advice taken from ................ dietician. All staff who feed ................ follow the care plan.
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................ is fed a diet of blended foods which Mrs.................. prepares at home.
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Food is sent into school on a daily basis.
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A portion of lunch and a snack (either blended food or calorific drink) will be provided for each school day.
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All food will be peanut free.
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Food will be given at room temperature.
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Appropriate portions of home prepared food will be provided, however volumes may vary depending on the fat content of the ingredients.
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Varying amounts of cool boiled water can be added to the food by school staff to ensure it can be easily administered.
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If home prepared food is not available, Formula will be provided.
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The overall responsibility for ......... nutrition remains with Mrs.................... who will ensure that ......................nutritional needs are fully met in any 24 hour period.
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Trained staff at ...........................School agree to carry out ................ gastrostomy feeds only in accordance with the above points, and to follow his feeding plan.
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Any changes to ............... nutritional needs will be communicated to the School Healthcare Nurses in order for ............... feeding plan to be up to date and valid.
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................ feeding plan with be reviewed at least yearly by the School Healthcare Nurses, in conjunction with Mrs .................and with advice from the paediatric dietician, .................... Hospital).
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..............t will be weighed at ...................Hospital on a regular basis. This will provide appropriate monitoring of his overall nutritional intake.
Disclaimer
This is to confirm that I will not hold any member of school staff or ..................Hospital Staff liable for any problems that should arise as a result of this feeding regime, as long as appropriate care and attention as outlined in this document has been undertaken.
Signed_______________ Mrs.............. Date:
Signed_______________....................................................School Date:
Signed_______________ ............................................................................ Date:
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:
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Check the clamp on the extension tube has been released
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Check for a blockage of food particles at the end of the syringe
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If there is no obvious blockage, try flushing the tube with a small amount of water
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If there still appears to be a blockage, reattach syringe and try gently drawing back a small amount of food- discard and try again
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If there is no success with these, contact Mrs .......or Mrs................
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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:
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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.
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Infection- Correct hygiene procedures should be followed in personal hygiene and preparing of the food and equipment to minimize the risk of infection
Review at yearly intervals.
Further articles to support Blended Diet
A recent article from Nursing Children and Young People about BD
https://pdfs.semanticscholar.org/9a55/801880a49b7730e7b5b0ed57aaed99921a32.pdf
Abstract The administration of a blended diet via a gastrostomy tube to children with complex needs is an evolving area of practice. Healthcare professionals must provide guidance, promote best practice and optimise patient safety where patients and families choose a blended diet in preference to the prescribed commercial feed. The Aneurin Bevan Health University Health Board in Newport, Wales, took a collaborative approach, by working with parents as equal partners, to enable a child with complex needs to receive a blended diet at school. The development of a protocol and risk assessed approach enabled the delivery of bespoke flexible care that met the holistic needs of the child and family and improved the child’s quality of life. The initiative also led to positive outcomes for the school and wider community.
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Blended foods for tube-fed children: a safe and realistic option? A rapid review of the evidence
An article published in the BMJ
http://adc.bmj.com/content/102/3/274
Abstract
With the growing number of children and young people with complex care needs or life-limiting conditions, alternative routes for nutrition have been established (such as gastrostomy feeding). The conditions of children and young people who require such feeding are diverse but could relate to problems with swallowing (dysphagia), digestive disorders or neurological/muscular disorders. However, the use of a blended diet as an alternative to prescribed formula feeds for children fed via a gastrostomy is a contentious issue for clinicians and researchers. From a rapid review of the literature, we identify that current evidence falls into three categories: (1) those who feel that the use of a blended diet is unsafe and substandard; (2) those who see benefits of such a diet as an alternative in particular circumstances (eg, to reduce constipation) and (3) those who see merit in the blended diet but are cautious to proclaim potential benefits due to the lack of clinical research. There may be some benefits to using blended diets, although concerns around safety, nutrition and practical issues remain
Use of blended / liquidised ‘table food’ diets via gastrostomy:
Questions and Answers
Some informative answers to questions that may occur from multiple sources and brought together by the charity Together for Short Lives.
A must read document.
There are other options if the above doesn't work, such as legal representation. There are also laws about disability discrimination, and a child not fed in a way which has proved beneficial will fall into that category. The new Education, Health and Care Plans (EHCP), which replace Statements of SEN, appears to put an emphasis on the health needs of the child and if you consider BD a health issue for your child (which we all do), then its worth reading up the IPSEA website on the EHC Plans.
http://www.ipsea.org.uk/what-you-need-to-know/ehc-plans
It states 'Health care provision that has been assessed reasonably required' which I would definitely consider BD to come under. We have not needed legal representation, but we were prepared to take things further and if anyone has gone down this route with success (or not) I would be happy to add your experience for the benefit of others.
If you are still having difficulties look at the next sections. The Dietician and The School