Table 1.

Open-ended question “Do you want to tell us in your own words about the problem and the effect it has had on you?” This question followed a multiple-choice question about the type of problem that had been experienced. This question is described in full as it may have influenced the responses to the open-ended question.

What kind of problem are you experiencing? (Tick any that apply to you)

•The NHS authority (e.g. the Clinical Commissioning Group/Health Board) for my area is refusing or restricting prescribing for PKU products. •The NHS authority for my area has made a policy that creates an obstacle for getting my prescriptions. •The GP will not prescribe the products I want. •The GP restricts the quantity of products I can get. •The GP's receptionist/administrative staff are unhelpful or obstructive. •The GP refuses to allow repeat prescriptions. •My dietitian or consultant will not prescribe the products I need. •I have a prescription, but I cannot get the products I want from the chemist. •I have a delivery service - but the system doesn't work. •I have prescription foods delivered which are out of date, or wrong, or damaged or poor quality. •Other