1. The role of the Dietitian in Caring for People with Learning Disabilities Pat Redfern, Specialist Dietitian

2. The main areas of work Nutritional support of the malnourished client Specialist support to clients with chronic disease. Facilitating access to main stream dietetic care where appropriate Keeping the well - well

3. Malnourished BMI<15 Swallowing problems ‘Extreme’ food related behaviours Chronic disease eg diabetes constipation IBS, food allergies Weight management Healthy eating, disease prevention One to one. Assessment, intervention plan, Complex capacity and consent issues Assessment, intervention plan, support and training for care staff, facilitate access to main stream care Training and Support to staff, ensuring inclusion in public health/health promotion strategies and initiatives. One to one support where needed

4. Guiding principles and policy Valuing People: A New Strategy for Learning Disability for the 21st Century The four key principles underpinning the White Paper are stated as being : rights, independence, choice inclusion And nowhere are these more applicable than when it comes to food eating and drinking and dietetic care. Valuing People Now 2009

5. Nutrition Guidelines There have been a whole range of NICE guidelines that cover dietary issues and all address the issues of ‘inclusion and supporting ‘the hard to reach’. Of particular significance : Nutrition support in adults: oral nutrition support, enteral tube feeding and parenteral nutrition ( Feb 2006) Obesity: the prevention, identification, assessment and management of overweight and obesity in adults and children (December 2006)

6. NICE guidelines (malnutrition) People in care homes should be screened on admission and when there is clinical concern. Nutrition support should be considered in people who are malnourished, as defined by a BMI of less than 18.5; unintentional weight loss greater than 10% within the last 3–6 months; or a BMI of less than 20 and unintentional weight loss greater than 5% within the last 3–6 months. Nutrition support should be considered in people at risk of malnutrition, as defined by having eaten little or nothing for more than 5 days and/or are likely to eat little or nothing for the next 5 days or longer; who are unable to take in nutrients properly, and/or who have increased nutritional needs.

7. Supporting the Malnourished client FS lives in a home with a number of other people. His low body weight had been long accepted as the norm. Eating and drinking is a stressful experience but food is a real pleasure for this gentleman His family have ambivalent feelings about the best thing to do.

8. Role of the dietitian in managing malnutrition Screen and ensure low body weight is not accepted as the norm. Work with the MDT in developing eating and drinking plans Awareness of MCA Oral nutritional support. Nutritional support via PEG. Training for all involved

9. Specialist Support to People with Chronic disease Range of clients including those with: Diabetes Raised cholesterol levels Dementia Constipation Obesity Food intolerances and IBS

10. Specialist Support to People with Chronic disease …… cont. Awareness amongst carers of symptoms and impact on health. Providing information to the client in a form they can understand where ever possible. Providing information to carers on the main principles of dietary treatment Supporting carers to work through the conflict between ‘freedom of choice’ and ‘duty of care’ Ensuring appropriate investigations are undertaken to determine cause of symptoms.

11. Diets specific to learning disabilities Diet and Austistic Spectrum Disorder Sensory issues and ‘faddy eating’. Are they meeting their nutritional requirements ? How can they be met ? Can the person be supported to try new foods? Diet as Treatment -Gluten and Casein Free -Exclusion of food additives and colourings -Exclusion of phenolic compounds and foods high in salicylates -Yeats free Supplements - Range of vitamins and minerals in particular B6, Vitamin D, iron, zinc and magnesium - Fish Oils

12. 5 steps for a new “Gold standard” for dietary evidence 1.Is there evidence of marginal or excessive intakes at the population level? 2. Are there plausible mechanisms through which the nutrient, food or diet might help? 3. Is the food, nutrient, or diet broadly consistent with “healthy eating” messages? 4. Are there populations who consume this nutrient, food or diet at this level, without obvious harmful effects? 5. Is there some evidence from clinical trials in favour of the proposed nutrient, food or diet?

13. General principals for ASD 1.Eat regularly 2. Insist on breakfast 3. Additive audit 4. Eat oily fish or take a supplement 5. Consider vitamin D supplement 6. Eat at least 5 portions fruit and veg a day 7. Eat beef, lamb or venison twice a week for Iron 8. Have pure fruit juice with toast or breakfast cereal 9. Check Iron and ferritin if fruit/veg/red meat intake is poor 10. Consider sensitivity to “natural” foods, but seek advice

14. Facilitating Access to main stream care Principles of Inclusion Support and education to other dietetic practitioners. Clear referral criteria to specialist team and dietitian Work with other members of the primary care team and liaison nurses

15. Keeping the ‘Well’ the Well Change in provision of Care No standards across all homes Managing the conflict between ‘freedom of choice’ and ‘duty of care’ Dependant on individuals knowledge and interest in food.

16. Role of the dietitian in maintaining health through healthy eating Inclusion of meaningful and monitored catering standards in contracts with care providers Assessment tool for menus Teaching and user - friendly menu planning guides for care staff Support to clients preparing their own food Links with HP - Eatsome project, CHEFS

17. References PROFESSIONAL CONSENSUS STATEMENT The Nutritional Care of Adults with a Learning Disability in Care Settings Adapted from QIS Food, Fluid and Nutritional Care Standards (September 2003) Produced By: Dietitians working with Adults with a Learning Disability and members of the Scottish Dietetic Learning Disability Forum supported by The British Dietetic Association Specialist Mental Health Group Principal Authors: Fredrica DiMascio, Kirsty Hamilton and Lorna Smith Date of Issue: December 2004 Valuing people now: a new three-year strategy for people with learning disabilities Published: 19 January 2009 Home Enteral Tube Feeding for Adults with a Learning Disability: a professional consensus statement produced by: The Enteral Tube Feeding in the Community for Learning Disabilities (ETFiC4LD) Group, a sub-group of the Specialist Mental Health Group of the British Dietetic Association (September 2008). Home Enteral Tube Feeding for Adults with a Learning Disability Easy health web site for easy to read information Caroline Walker Trust. Eating Well. Supporting adults with Learning Disabilities with Diet and Autistic Spectrum Disorder. British Dietetic Association (2006) www.epilepsy.org.uk/info/ketogenic.