12 February 2009
Adults with learning disabilities to be given extra support by dietitians

A new national set of good practice guidelines has been developed by dietitians for health professionals to prevent nutritional problems as well as optimise the health and wellbeing of adults with learning disabilities.

Nutritional problems have a very high prevalence in adults with a learning disability and can lead to significant health consequences as a result of either overweight or under nutrition. These problems place a significant financial and resource burden on health and social care systems. In 2007, overweight and obesity were reported to cost the NHS £4.2 billion1, whilst £7.3 billion was the calculated health care cost of undernutrition (and any associated disease) in 20032. Under nutrition is associated with a reduced immune system leading to increased risk of infection, delayed wound healing, depression, compromised respiratory and cardiac function and reduced muscle strength3.

Currently, two percent of the population have learning disabilities but only 0.5% access services4.  However, with an increasing number of children with complex needs and learning disabilities surviving into adulthood, demand for these services is expected to rise. The first National Consensus Statement on Home Enteral Tube Feeding for Adults with a Learning Disability, published by the British Dietetic Association, will be an in valuable tool for health professionals.

Enteral Tube Feeding is when a person receives fluid, nutrition, or medications through a plastic tube. It is used as a treatment for undernutrition and when there are difficulties in eating, drinking, or swallowing safely; when a person is unable to eat or drink enough to keep healthy or recover from an illness. Tube feeding can be used to either supplement a patient’s diet or, provide all the nutrition they need.

Adults with learning disabilities, who require tube feeding, tend to require it throughout their life, compared to an average of eight months for the mainstream population. As a result correct nutritional care is of utmost importance.

Julia Fairclough, dietitian from South Birmingham Primary Care Trust and member of the British Dietetic Association was instrumental in producing the guidelines. Says Julia: “There is a great variation across the UK in the treatment received by patients with Learning Disabilities receiving tube feeding. The lack of consistent approach meant that a person’s care would be different depending on where they lived, so hopefully the consensus statement and guideline will prove invaluable.

“The consensus statement not only addresses the needs of the patient, but also their carers, and provides much needed support they require. It also explains how patients should be assessed for tube feeding and ongoing monitoring. In addition, the guidelines explain how professionals can work with their patients and carers to achieve good care, covering consent, how to meet their needs using the patient centred approach, and training and educational needs of carers.”

The team consisted of dietitians and nutrition nurses from England, Scotland, Wales and Northern Ireland, as well as collaborating with the Royal College of Nursing (RCN) with funding from the Learning Disability Development Fund (LDDF) making it a unique national project. Most importantly they sought feedback and comments from service users and their carers.

The result is a much needed and long awaited authoritative document for health professionals, bringing together guidance about the nutritional care of adults with learning disabilities receiving tube feeding in one place. It includes comments from carers interspersed throughout the document that provides a poignant insight into their lives and the value of the Person Centred approach.

The executive summary is now available to download from the BDA website www.bda.uk.com/resources . The full document is available to BDA members and RCN members; others may request a copy by contacting the BDA.

- Ends -

Notes to editors

  1. The definition of a learning disability or intellectual disability includes all of the following dimensions (WHO, 2001). It was previously known as mental handicap.
    • A significant intellectual impairment with an intellectual quotient (IQ) more than 2 standard deviations below the general population i.e.  an IQ below 70 on a recognised IQ testand
    • A reduced ability to understand new or complex information or to learn new skills (impaired intelligence). A reduced ability to cope independently (impaired social functioning). Formal assessments include the Vineland Adaptive Behavior Scales and the AAMR Adaptive Behavior Scales.and
    • A condition which started before adulthood i.e. age 18yrs with a lasting effect on development.
  2. A learning disability can result from brain damage or malformation during foetal development or childhood and adolescence. It is not reversible but educational programmes and health and social care can do much to help people with learning disabilities achieve their full potential.
  3. A Consensus Statement is a written consensus of opinion from experts working in the field on best practice. It is developed using robust evidence, current accepted practice and professional clinical judgement. It is developed using stringent procedures and ratified by the professional governing body and adopted for use by professionals.

The British Dietetic Association, founded in 1936, is the professional association for registered dietitians in Great Britain and Northern Ireland.  It is the nation’s largest organisation of food and nutrition professionals with nearly 6,000 members. About two-thirds of members are employed in the National Health Service.  The remaining members work in education, industry, research, sport settings or freelance.

Registered dietitians hold the only legally-recognisable graduate qualification in nutrition and dietetics.  They are experts in interpreting and translating the science of nutrition into practical ways of promoting nutritional well-being, disease treatment and the prevention of nutrition-related problems.  Their advice is sound and based on current scientific evidence. Registration, awarded by the Health Professionals Council, is an indication that a dietitian is fit to practise and is working within an agreed statement of conduct. For further details about the British Dietetic Association, please visit our website: www.bda.uk.com.

References:

1 Swanton K (2008). Healthy Weight, Healthy Lives: A toolkit for developing local strategies.  London: National Heart Forum.
2 Elia, M, Stratton, RJ, Russell, C, Green, C, Pang, F (2006). The cost of disease-related malnutrition in the UK and economic considerations for the use of oral nutritional supplements (ONS) in adults. Redditch: British Association for Parenteral and Enteral Nutrition.
3 NICE (2006) Nutrition Support in Adults. Oral nutrition support, enteral tube feeding and parenteral nutrition.  Clinical Guideline 32.  London: National Institute for Health and Clinical Excellence.
4. DH (2007) Valuing People. London: HMSO.


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