Early day motion tabled by primary sponsor Faisal Rashid (Labour), on Thursday, 8 March 2018, in the House of Commons. It is signed by 30 members in total.

---

ACCESS FOR PHENYLKETONURIA PATIENTS TO TREATMENT, SUPPORT AND INNOVATIVE NEW MEDICINES

That this House recognises the need to raise awareness of phenylketonuria (PKU), a rare metabolic disease which inhibits the ability to metabolise phenylalanine within protein; notes that the disease can cause irreversible brain damage or impaired cognitive or neurological function if not correctly treated; is concerned that the only treatment currently provided by the NHS is a severely restricted diet which places a great burden on patients or carers; acknowledges the impact of PKU on patients, carers and family life; further notes the particular need for care and treatment to support women with PKU in pregnancy and prior to conception to ensure safe pregnancies that minimise stress on women with PKU; further recognises the need to ensure consistent access to special dietary foods, protein substitutes, dietetic and psychological support to assist people with PKU to manage their condition; understands that the medicine Kuvan for the treatment of PKU is due to be appraised for use on the NHS; further understands that Kuvan is widely available for patients with PKU in the majority of European countries; and supports the calls of the charity the National Society for Phenylketonuria (UK) Limited for the appraisal to be concluded swiftly.

---

Secondary information

Type

Early day motion

Reference

1044 

Session

2017-19

Other sponsors

Tim Farron

Lord Austin of Dudley

Chris Williamson

Peter Aldous

Liz Twist

Subjects

Health services Diseases Food

Link

View this Early day motion on edm.parliament.uk