ABSTRACT
Patients with phenylketonuria (PKU) are reliant on special low protein foods (SLPFs) as part of their dietary treatment. In England, several issues regarding the accessibility of SLPFs through the national prescribing system have been highlighted. Therefore, prescribing patterns and expenditure on all SLPFs available on prescription in England (n = 142) were examined. Their costs in comparison to regular protein-containing (n = 182) and 'free-from' products (n = 135) were also analysed. Similar foods were grouped into subgroups (n = 40). The number of units and costs of SLPFs prescribed in total and per subgroup from January to December 2020 were calculated using National Health Service (NHS) Business Service Authority (NHSBSA) ePACT2 (electronic Prescribing Analysis and Cost Tool) for England. Monthly patient SLPF units prescribed were calculated using patient numbers with PKU and non-PKU inherited metabolic disorders (IMD) consuming SLPFs. This was compared to the National Society for PKU (NSPKU) prescribing guidance. Ninety-eight percent of SLPF subgroups (n = 39/40) were more expensive than regular and 'free-from' food subgroups. However, costs to prescribe SLPFs are significantly less than theoretical calculations. From January to December 2020, 208,932 units of SLPFs were prescribed (excluding milk replacers), costing the NHS £2,151,973 (including milk replacers). This equates to £962 per patient annually, and prescribed amounts are well below the upper limits suggested by the NSPKU, indicating under prescribing of SLPFs. It is recommended that a simpler and improved system should be implemented. Ideally, specialist metabolic dietitians should have responsibility for prescribing SLPFs. This would ensure that patients with PKU have the necessary access to their essential dietary treatment, which, in turn, should help promote dietary adherence and improve metabolic control.
Subject(s)
Diet, Protein-Restricted , Dietary Proteins/analysis , Foods, Specialized/economics , Phenylketonurias/diet therapy , Practice Patterns, Physicians' , State Medicine/economics , Costs and Cost Analysis , Diet, Protein-Restricted/economics , England , Food Labeling , Foods, Specialized/analysis , Guidelines as Topic , HumansABSTRACT
A paediatric dietitian, occupational therapist and speech and language therapist describe how they jointly run a feeding clinic for infants and children with feeding difficulties. Conditions treated include cerebral palsy, autism, learned aversion following severe gastro-oesophageal reflux, and delayed oral development that affects feeding. The therapists' co-ordinated approach enables parents to receive clear guidance on feeding at one combined appointment, without the inconvenience of having to attend three separate appointments. The article outlines the role of each therapist, with examples of how they assess and alleviate the children's problems. The need for safety, nutrition and hydration is balanced against the desire for developmental progress in a holistic approach involving all three therapy disciplines. The aim of the feeding clinic is to provide advice, support and intervention plans to help make feeding a pleasurable and safe experience for all the children who attend.
