Phenylketonuria
The question
To ask the Secretary of State for Health and Social Care, what recent assessment he has made of regional variation in access to care and dietary support for people living with Phenylketonuria in England; and what steps his Department is taking to ensure consistent provision across NHS regions.
Answered by Preet Kaur Gill
We recognise that there are health inequities faced by those living with rare diseases and reducing them is a key commitment within England’s Rare Diseases Action Plans. This includes a new and important action to embed rare diseases within the NHS England Core20PLUS5 framework. This work aims to ensure that people living with rare conditions, including phenylketonuria, are better recognised within healthcare inequalities programmes and supported through more equitable access to healthcare services.
No specific assessment has been made of regional variation in access to care and dietary support for people living with phenylketonuria in England. However, NHS England commissions a specialised service for inherited metabolic disorders, through which commissioned hospitals provide access to specialist food supplements and clinical support. Newborn screening enables early diagnosis and referral into specialised services. NHS England is also working with providers to support equitable access, including through remote monitoring and advice to help minimise travel requirements for highly specialised services. In addition, professionals work with manufacturers to improve the range, acceptability and access to specialist dietary supplements and low-protein foods.
The Government remains committed to improving access to specialist care, treatments and drugs for people with rare diseases through the UK Rare Diseases Framework and the England Rare Diseases Action Plans.
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