NSPKU produces detailed guidance on a low phenylalanine diet for the treatment of PKU.

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All our resources are free but please support our work with a donation if you can.

  • Exchange free fruit and vegetables: Download
  • Ice creams, lollies and sorbets: Download
  • Prescribed dietary products for PKU: Download
  • Low protein list: Download
  • Practical guidance on managing your PKU prescriptions (Barbara Cochrane): Download
  • Information for Pharmacists: Download
  • Meal plans and general dietary resources: Download
  • Low protein cheese: Download

Supporting patients to access prescribed products

NSPKU’s advocacy and research work has identified that many people with PKU struggle to get the specialist dietary products they need.

 “Patients frequently tell me that they find it difficult to obtain prescriptions for supplies of ACBS foods and protein substitutes. Their prescriptions may be cut, reduced, interrupted or continually questioned. This can cause stress and upset to families and individuals living with PKU.”
Professor Anita MacDonald

Guide for GP administrative staff  

  • You can take this to your GP surgery to help them understand PKU and to support you: Download

Prescription charges for adults (16 plus) in England

If you are aged over 16 living in England you may need to pay prescription charges for your prescribed dietary products. Practical advice about prescription exemptions and using a prepayment certificate is available here: Prescription charges for adults

NSPKU supports calls for a review and reform of the medical exemption list for prescription charges in England.


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