In Memoriam: Fernand Labrie, June 28, 1937 – January 16, 2019

Abstract

In the UK, the customary method of obtaining special low protein (LP) foods was by dispensing through a pharmacist (until 2010) for patients with inherited metabolic disorders (IMD) requiring LP diets. Recently, different home delivery services have been introduced to support patient access of low protein foods, but the effectiveness of these services is unclear.A prospective, longitudinal, observational study to examine the effectiveness and safety of patient home delivery services for LP foods over 12 months in IMD patients requiring a LP diet.IMD patients/caregivers had the choice of 2 home delivery services (Homeward® and Vitaflo at Home®) as well as access to primary care pharmacy services. Both home delivery services provided a limited range of LP foods. Over a 12-month period, a member of the IMD dietetic team conducted 4 home visits to IMD patients on LP diets using home delivery services for low protein foods. At each visit, caregivers completed a questionnaire consisting of 20 multiple choice and open questions about their prescription experience with special LP foods. The researchers also completed stock checks, assessed ‘use by dates’ and adequacy of home storage for LP foods.In total, 58 patients participated in this study. Over 12 months, 95% (n = 55/58) of caregivers used their local pharmacy, 93% (n = 54/58) Homeward® and 78% (n = 45/58) Vitaflo at Home® to access LP foods. Two home delivery services were used by 41 (71%) caregivers and the remaining 17 (29%) only used one of the home delivery service companies. Each patient only stored a median of 6 (range 0–22) different LP foods at home. Overall, 45% (n = 26/58) of caregivers reported problems with their GP prescriptions. 30% (n = 16/53) of caregivers received at least one incorrect prescription when using their pharmacy (e.g. gluten-free foods instead of LP, incorrect product or incorrect product amount), 6% errors (n = 3/53) with Homeward® and 2% (n = 1/48) with Vitaflo at Home®. 49% (n = 26/53) of caregivers said they experienced delayed receipt of LP foods from their pharmacy, compared with 11% (n = 6/55) from Homeward® and 8% (n = 4/48) Vitaflo at Home®.Although home delivery services for special LP foods are associated with less errors and delay compared with pharmacies, inaccuracies and inefficiencies still occur and the overall system is complex. We suggest a new, simpler, less fragmented system whereby metabolic dietitians prescribe LP foods. This is likely to result in less burden on NHS resources and ensure a better treatment delivered to IMD patients.