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Review of specialist dietitian services in patients with inherited metabolic disease in the United Kingdom

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Abstract Introduction

Dietary management forms the mainstay of treatment for many inherited metabolic diseases (IMDs) and specialist dietitians play a crucial role in the multi-disciplinary core team for these patients. Professional concerns have been expressed that the current clinical workforce is inadequate for meeting current and future service demands. The aim of this work was to describe the provision of specialist dietetics to patients with IMD as part of a national needs assessment and review. Materials and methods

The 24 main specialist providers and 27 specialist dietitians were surveyed by a questionnaire. A focus group of three specialist dietitians was also held to explore the roles of specialist dietitians in greater depth. Results

Responses were received from all 24 specialist service providers and 63% of 27 specialist dietitians. The majority of service providers (92%) have specialist dietitians, but only eight services had more than one whole time equivalent (33%). Key roles were management of complex dietary regimens, prevention and management of metabolic crises, education, co-ordination of care, clinical audit and research. Although highly qualified, there is currently no clear formal career structure or training pathway for dietitians in IMDs. Conclusion

Specialist dietitians have important clinical and leadership roles in managing IMD but specialist services are thinly spread. There is a need for access to formal education, training and support programmes. The clinical workforce needs expansion to provide more comprehensive and equitable services.
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Keywords: inherited metabolic disease; needs assessment; quality of care; service provision; specialist dietitian

Document Type: Research Article

Affiliations: 1: Public Health Genetics Unit, Cambridge, UK 2: General Practice and Primary Care Research Unit, University of Cambridge and Public Health Genetics Unit, Cambridge, UK 3: Dietetic Department, Great Ormond Street Hospital for Children, NHS Trust, London, UK 4: The Charles Dent Metabolic Unit & Nutrition and Dietetics Department, National Hospital for Neurology and Neurosurgery, UCLH NHS Foundation Trust, London, UK 5: Willink Biochemical Genetics Unit & Department of Nutrition and Dietetics, Central Manchester and Manchester Children's University Hospitals NHS Trust, Manchester, UK

Publication date: 2007-04-01

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