9.9 Nutrition

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Last edited: 29-08-2024

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9.9 Nutrition

See Milk Related Problems Remedy page

Phenylketonuria

Patients with phenylketonuria (PKU) are managed with a low protein diet, including special low protein versions of common foods such as flour, bread and pasta which are not freely available other than prescription.

ACBS indications for prescribing low protein foods include inherited metabolic disorders, renal or liver failure required a low protein diet. Thus prescribing low protein foods for individuals with PKU is in line with ACBS criteria.

PresQIPP guidance on prescribing in PKU

PKU society guidance on appropriate quantities of prescribed low protein foods

9.9.1 Ketogenic supplements

Some patients with drug resistant epilepsy or with genetic conditions affecting glucose uptake or metabolism (including Glucose Transporter 1 Deficiency Syndrome and Pyruvate Dehydrogenase Deficiency) may follow the ketogenic diet and use prescription ketogenic supplements and/or foods as part of the dietary management. Due to the complexity of these patients and the need to tailor treatment to the individual, it is not possible to list all ketogenic prescription items on the formulary and choice of item should be guided by the ketogenic dietitian.

Monitoring and review of these products will be undertaken by the ketogenic dietetics team. The diet is typically used for 2 years, though in genetic conditions (as above) is likely to be lifelong. These items are not needed once the patient has come off the diet.

Further information regarding the ketogenic diet is available from Bristol Children's hospital Ketogenic Dietary Therapy and the Ketogenic Medical Management Plan

The charities ‘Matthews Friends’ and ‘The Daisy Garland’ have further information regarding the ketogenic diet.

9.9.2 Coeliac Disease

Coeliac disease

Intolerance to gluten in coeliac disease is managed by completely eliminating gluten from the diet.

Following consultations by North Somerset and South Gloucestershire CCGs (Summer 2017) and Bristol CCG (early 2018) the newly formed Bristol, North Somerset and South Gloucestershire Clinical Commissioning Group (BNSSG CCG) no longer prescribes gluten free foods to patients aged 18 and over. Prescriptions are still available for those patients aged under 18 from a limited choice of products.

If you have further questions or feel you need further support in managing your condition, please contact the surgery to make an appointment.

Bristol, North Somerset and South Gloucestershire (BNSSG) CCG have developed guidance for prescribing within the area:

BNSSG Gluten free prescribing guidelines (April 23 update link available on adult page)