About the NSPKU

Introduction

The NSPKU was founded in 1973 by Brian and Sylvia Smith, whose sole aim was to help build a community around Phenylketonuria (PKU), a rare metabolic disorder.

1 in 10,000 babies born in the UK have PKU, that equates to around 60-70 babies per year, and the NSPKU exists to support patients, families and carers and to help them live and thrive with the condition.

How can they help you?

The NSPKU has many functions, including but not limited to, promoting care, providing new parent packs, holding PKU events and conferences, and creation of advice papers for employers, pharmacists and professionals. All with the aim of keeping you on track with your low protein diet.

The organisation also sponsors medical research into alternative treatments and field a plethora of enquiries on a daily basis through social media, email, phone and direct message. Queries relate to anything from ‘travelling with PKU’ to ‘exchange value confirmations’ to ‘general support and guidance’. All queries are logged, tagged and followed up on.

The NSPKU have also been involved in raising awareness of PKU amongst MPs, and recently got a selection of MPs to do the PKU diet challenge for one day. As of 24 May, 2 of the MPs are looking to do the diet for a full week.

6 Demands for Change

The NSPKU have several objectives for the foreseeable future:

1. All children and adults to be treated within specialist metabolic centres with experienced physicians and dietitians
2. All adults with PKU to have lifelong systematic metabolic treatment and follow up in a specialist centre
3. Fair, transparent and equitable commissioning of all non dietary treatment for PKU
4. All patients to have BH4 responsiveness testing
5. All patients should have access to psychological support and age appropriate neurocognitive testing and follow up support
6. Better access to the full range of prescription products including low protein foods and protein substitutes.

NSPKU Annual Conference

The NSPKU’s annual conference is an excellent way for patients and new parents to find out everything they need to know about PKU and we would highly recommend attending. Over the three-day event, you will meet others with PKU in the UK, get food and recipe inspiration, try a range of protein substitutes to find the right formula for you, and attend talks from professionals in the field. These talks range from medical professional’s PKU research, to patients talking about living with PKU.

Comprehensive Food Guide

The NSPKU also maintain a very important ‘traffic light’ food booklet. ‘Green foods’ listed in the booklet are exchange free and do not need to be counted as exchanges. ‘Amber foods’ can be eaten in moderation but do need to be counted as exchanges. ‘Red foods’ should be avoided completely. All of our Low Protein in 15 recipes use exchange free foods from the green list unless explicitly stated.

If you have any other questions, email us at ukinfo@cambrooke.com.