Talking to School about PKU

As Keir will be starting school in September, we have started conversations with his new school. Naturally, we are very nervous about management of his diet at school as he is very young and will need lots of help.

The SEN co-coordinator of the school has arranged a meeting between us and the school chef. This is so that we can discuss the diet and the challenges. This gives us a great deal of confidence that the school is taking it seriously.

We have discussed with them already the care that is going to be needed. The nursery that Keir attends has one member of staff to watch Keir eat and ensure that he doesn’t eat anything he shouldn’t and that he eats all of his PKU gel and protein. This has been great. We realise that the school is not going to be able to allocate one member of staff to Keir during lunch time, but he is still so young and while we have been trying to teach him to be independent he is not there yet. We did discuss if there was funding available to help. The school has assessed that the additional care he needs is approximately 15 hours per week in food preparation and additional supervision. This unfortunately means that there is no additional funding available from the Local Authority as it needs to be more than 15 hours.

We have prepared some notes to take with us that sums Keir’s diet and explains what support he will need. These handouts can be placed around and displayed in the kitchen for quick reference.

If you are going through the same processes as us, please feel free to modify and use it for your own school as it is specific to Keir and his diet. I have included a link to a pdf version as well as a powerpoint version below. If you don’t have powerpoint, you can use the free version called OpenOffice which is what I used. Leave a comment below, if you have any questions or just would like to share your story!

Keir- School Notes

Keir’s School Notes – Editable Version


4 thoughts on “Talking to School about PKU

  1. Hi, this is great! My daughter Amber is due to start school in Sept (she turns 4 on August 23rd 😳) and I love to use your document as the basis for something to give to her new school, please? She’s only allowed 4 exchanges a day so I don’t think she’ll have any at school but this has given me a lot of food for thought. Thank you!


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