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Chairman and Editor: Professor J Lennard-Jones.

Summary and Recommendations

Summary

  • At any one time in 1994, about 3,000-4,000 patients are receiving Home Enteral Tube Feeding (HETF) in Britain and 250-300 are receiving Home Parenteral Nutrition (HPN). The use of HETF is increasing rapidly; the use of HPN is relatively stable.
  • HPN is directed from a few specialist centres which have contributed to a national register since 1980. HETF is much more widespread but a national register was only set up in 1990. Both registers are deficient in certain important aspects.

The benefits of home nutritional support are

  • improved patient survival - 4-year survival on HPN for patients with a variety of disorders ranges from 65% to 80%
  • improved patient well-being - 44% of HPN patients in one survey led a virtually normal life although, because of the more disabling nature of the underlying disorders, only about 20% of HETF patients were fully independent
  • cost savings - home rather than hospital nutritional support is estimated to result in a saving of 50% for HPN and around 70% for HETF

Problems with the present system include

  • training and support - there is often neither the time nor the staff available for proper training of patients and carers
  • aftercare - GPs are generally inexperienced in the care of patients receiving home nutritional support especially HPN, and are not permitted to prescribe the equipment required to deliver feeds
  • compliance - cumbersome procedures and equipment create difficulties for patients and their carers
  • finance - different parts of the service are funded from different budgets
  • organisation - the low prevalence of home nutritional support means that there are few specialist teams available to co-ordinate the service
  • audit - the registers for HPN and HETF were set up for different purposes by different groups of professionals and are not compatible.

Recommendations

It is important to move towards

  • local and national audit systems - so that the effectiveness and cost of the service can be monitored adequately even in rare indications
  • multidisciplinary nutrition teams - to provide expert supervision, a single channel for administration, and specialist training and support

The committee's recommendations are therefore

  • that a properly structured national system should be set up to administer the provision of both HPN and HETF, creating local centres with adequate staff for HETF and simplifying the prescription and supply of feeds and accessories
  • that local and national registers of patients on HETF and HPN should be established and that analysis of treatment, outcome and cost-benefit should be regularly extracted and supplied to relevant health professionals
  • that procedural guidelines and standards should be established to ensure adequate training and quality of care for patients.