In 2016 we launched our Call for Action campaign to improve the lives of people living with PKU.
We Campaign For:
We are living through a time of unprecedented innovation in PKU research. We want people with PKU living in the UK to be able to have access to the same range of treatment options available elsewhere.
Currently there are two treatments licensed for use in the UK (KUVAN and Palynziq) and it is likely that other treatments will become available in the future.
Equal access to good clinical care
People with PKU need and value expert metabolic care. NSPKU recommends that all people with PKU should be followed up in an integrated specialist metabolic service led by an experienced metabolic physician and dietitian, with support from a psychologist and support worker. Clinical services need to be organised around the needs of patients and to reach everyone equally.
Prescribed dietary products
Currently people can face many different obstacles to getting the prescribed dietary products. These problems can exist through the whole process - from restrictions in some NHS regions right through to pharmacies and delivery companies. People with PKU need to be able to easily access the prescription only medical foods and protein substitutes they need and this needs the systems to work better.
Understanding for PKU in society
PKU is an invisible condition. People may need to explain their situation to people with little understanding, for example teachers, benefits assessors or even in restaurants. Policy makers need to respect the different nutritional needs of people with PKU, when considering matters such as sugar reduction strategies.
In 2018 the first All Party Parliamentary Group for Phenylketonuria (APPG) was formed, chaired by Liz Twist, MP for Blaydon. The APPG involves members from all parts of the UK.
Watch this film from 2019 which marked the first year of the APPG.
On 26 June 2018, a debate was held in Parliament which addressed many concerns of the treatment of PKU. You can watch an edited summary here.
Join our campaign
Our campaign is driven by people living with PKU across the UK. Get involved! Write to your MP or local representatives.