NHD May 2016 issue 114

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NETWORK HEALTH DIGEST The Magazine for Dietitians, Nutritionists and Healthcare Professionals

NHDmag.com

May 2016: Issue 114

THE ROLE OF VITAMIN D IN OLDER ADULTS Faltering growth Galactosaemia HOME ENTERAL FEEDING teenage eating disorders

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FROM THE EDITOR

welcome Emma Coates Editor

Emma has been a registered dietitian for nine years, with experience of adult and paediatric dietetics. She specialised in clinical paediatrics for six years, working in the NHS. She has recently moved into industry and currently works as Metabolic Dietitian for Dr Schar UK.

There’s never a dull moment in Dietetics and the last few weeks have proven no exception. We’ve had the updated Eatwell Guide and that long awaited announcement of the sugar tax. Both of which have sparked much debate and thought, which we Dietitians just love.

Checking my Twitter feed during these announcements made for some exciting and informative reading. Dr Emma Derbyshire RD discusses the Eatwell Guide in her Food For Thought column this month. Dr Mabel Blades RD addresses the additive combination of salt and sugar found in modern diets, and their contribution to our affinity with salty, sweet, fatty foods.

Further to reporting on hot topics in this NHD digital issue, we are covering the lifespan this month - and a few bits in between. Jacqui Lowdon RD, Specialist Paediatric Dietitian, sets the ball rolling with a valuable overview of faltering growth assessment and management. Freelance Dietitian and Eating Disorders Specialist, Priya Tew RD, then takes up the baton with her insightful teenage eating disorders feature. Priya shares her experiences and skills in working with this challenging patient group and condition.

Moving on to older patient groups, in our Cover Story, Maeve Hanan RD, Sunderland based Dietitian, looks at the sunshine vitamin D and its role in the health of people over the age of 65, while Anne Wright RD takes a closer look at hydration in residential aged care facilities. She defines the consequences of dehydration in the

elderly and discusses strategies to tackle the problem.

We are delighted to publish an article on Galactosaemia from metabolic dietitians, Suzanne Ford RD, Pat Portnoi RD and Professor Anita MacDonald. The article discusses suitable cheeses for people on a low lactose diet and presents the evidence for their safe use.

We have two excellent nutrition support articles too in this issue, the first being from Royal Brompton Hospital Dietitians, Marcela Fiuza Brito RD and Ione de Brito-Ashurst RD. Marcela and Ione take us through the use of parenteral nutrition (PN) in a surgical cardiothoracic patient, highlighting the current recommendations for PN use. In the second of the nutritional support articles, Siobhan Oldham RD discusses the demands on home enteral feeding services and her experiences in developing a future proof service at her trust in Gloucestershire.

Finally, 9th to 15th May is Coeliac Awareness Week and we have included an article from Anne Roland Lee RD, Dr Schar USA, which evaluates the current nutritional status of the gluten-free diet and looks at the future developments for this essential diet.

Happy reading! Emma

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3

Contents

13 COVER STORY

The role of vitamin D in older adults 6

News

9

Sugar and salt

Latest industry and product updates

44 Coeliac disease

The nutritional breakdown of a GFD

47 galactosaemia

An addictive combination?

Suitable cheeses

20 dying for a drink Dehydration in care homes 25 Home enteral feeding

Developing a service in Gloucestershire 29 Parenteral nutrition

Its role in cardiothoracic surgery

52 Book review

Death By Carbs by Paige Nick 54 A day in the life of . . .

A Coeliac UK Helpline Dietitian

33 FALTERING GROWTH

56 Web watch

Online resources and updates

Diagnosis & management

57 Dates for your diary

Upcoming events and courses

40 Eating disorders

Working with adolescents

58 The final helping

The last word from Neil Donnelly

All rights reserved. Errors and omissions are not the responsibility of the publishers or the editorial staff. Opinions expressed are not necessarily those of the publisher or the editorial staff.

Unless specifically stated, goods and/or services are not formally endorsed by NH Publishing Ltd which does not guarantee or endorse or accept any liability for any goods, services and/or job roles featured in this publication. Contributions and letters are welcome. Please email only to info@networkhealthgroup.co.uk and include daytime contact phone number for verification purposes. Unless previously agreed all unsolicited contributions will not receive payment if published. All paid and unpaid submissions may be edited for space, taste and style reasons.

Editor Emma Coates RD Publishing Director Julieanne Murray Publishing Editor Lisa Jackson Publishing Assistant Katie Dennis Special Features Ursula Arens News Dr Emma Derbyshire Design Heather Dewhurst

4

Advertising Richard Mair Tel 01342 824073 richard@networkhealthgroup.co.uk Phone 0845 450 2125 (local call rate) Fax 0844 774 7514 Email info@networkhealthgroup.co.uk www.NHDmag.com www.dieteticJOBS.co.uk

@NHDmagazine

Address Suite 1 Freshfield Hall, The Square, Lewes Road, Forest Row, East Sussex RH18 5ES

www.NHDmag.com May 2016 - Issue 114

ISSN 1756-9567 (Print)

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NEWS

food for thought The new Eatwell Guide has been a hot discussion topic recently and now we have it finalised to work with, but how different is it to the old Eatwell Plate?

Well, clearly, the name Figure 1: The new Eatwell Guide has changed from ‘plate’ to ‘guide’. The image (Figure 1), no longer a plate with a knife and fork, reflects its new Emma is a purpose as a guide to freelance nutritionist and former senior a whole dietary pattern academic. Her rather than every interests include mealtime. The segment pregnancy and public health. sizes have also been www.nutritionaladjusted using linear insight.co.uk programming methods hello@nutritionalinsight.co.uk which account for current dietary habits in the UK population.

Some foods have not made it into the main image and have been shifted to the outside. For example, high fat, salt and sugar foods are in the corner, reflecting advice If you have important news or that they are not an essential part of a healthy and research updates to share with NHD, balanced diet. Oils and spreads (the purple segment) or would like to send a letter to the are also out of the main image, indicating that they should be consumed in small amounts due to their Editor, please email us at info@ high calorie and fat content. networkhealthgroup.co.uk There is also a strong sustainability message, We would love to hear from you. particularly for fish. This is a good step forward, although the message to eat less red and processed meat is a confused one given that certain UK populations are at risk of iron deficiency.

Segment sizes for potatoes, bread, rice, pasta and other starchy carbohydrates are now considerably larger to align with higher fibre guidelines and new advice is to eat at least five portions of a variety of fruit and vegetables per day.

It’s also good news to see that some hydration guidance has been added.

Water, lower fat milk and sugar-free drinks, including tea and coffee, have been recommended (six to eight glasses per day), but fruit juices and smoothies should be limited to no more than a combined total of 150ml per day. Sugary drinks should be swopped for diet, sugar-free or no added sugar varieties.

An updated model was certainly needed and this is now clearer in some ways.

My main concern, however, is that it’s a slight step back. Yes, it’s a generic model that can be used by all, but a level of specificity is also needed. For example, advising everyone to reduce their meat intake doesn’t help those who may be anaemic.

Dr Emma Derbyshire PhD RNutr (Public Health) Nutritional Insight Ltd

For more information, see: Public Health England (2016). The Eatwell Guide. Available at:

www.gov.uk/government/publications/the-eatwell-guide (released 17th March 2016).

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www.NHDmag.com May 2016 - Issue 114

news

Energy misreporting in European teens In order to truly understand diet-disease associations, factors influencing misreporting of dietary energy need to be identified.

While some work has looked into this in adults, less is known about teenagers. The Healthy Lifestyle in Europe by Nutrition in Adolescence (HELENA) study has now looked into this.

Data from two 24-hour dietary recalls was collected from 1,512 European teens aged 12-17 years. Reported energy intakes were compared with predicted total energy expenditure to identify under- or over-reporting.

Results showed that overweight or obese teens were more likely to under-report, while underweight teens tended to over-report (as generally the case with adults). Being body content tended to reduce the likelihood of under-reporting while breakfast-skipping increased this.

These are interesting findings that require consideration in future work looking into the dietary habits of teens and young people.

Water and energy intake Water is calorie and sugarfree, but could drinking it help to regulate energy intake? New work, using data from the US National Health and Nutrition Examination Survey has now looked into this.

Authors analysed data from 24-hour dietary recalls completed by 18,311 adults. Results showed that drinking more water, even just a one percentage point increase in the daily proportion of plain water consumed, had dietary benefits. Daily energy at this level of intake was found to reduce by 8.58kcal, total fat intake reduced by 0.21g, sugar intake by 0.74g, sodium intake by 9.80mg and cholesterol intake by 0.88g. Effects were also found to be greater amongst males and young/middle-aged adults.

These are interesting findings, indicating that promoting the consumption of plain water could have a role to play in obesity prevention.

Next, randomised controlled trials are needed to study this further.

Journal of Nutrition [Epub ahead of print].

Journal of Human Nutrition and Dietetics [Epub ahead of print].

For more information, see: Bel-Serrat S et al (2016). British

For more information, see: An R and McCaffrey J (2016).

Postpartum pumping While the pumping was defined as when human milk was health bene- typically pumped to mix with solids. fits of breast- Overall, it was found that mums who had feeding for difficulties feeding their baby at the breast baby and were more likely to discontinue non-elective mum are pumping. Equally, mums who were pumping clear, the role human milk most frequently also had a 2.6-fold of pumping risk of stopping.. milk seems These are important findings and certainly to be over-looked. This is a viable option in worthy of further study. From these initial giving human milk in a way that some mums findings it seems that more guidance and may find easier. A new study has looked into support is needed in this area. Most advice is how the decision to pump milk may affect the given immediately after birth when support duration of human milk feeding. is also needed down the line. From personal The study looked at 1,116 mothers who experience, advice about pumping milk was fed and pumped human milk for any time at best scant and overshadowed by advice to between 1.5 and 4.5 months after birth. Non- breastfeed. elective pumping was defined as mums who For more information, see: Felice JP et al (2016). The American had difficulties feeding at the breast. Elective Journal of Clinical Nutrition [Epub ahead of print]. www.NHDmag.com May 2016 - Issue 114

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NEWS Pulses and body weight There has been much that diets containing 132 grams/day pulses interest in body weight (about one serving) led to significant recently, particularly in reductions in body weight by 0.34kg over the relation to cancer risk. Now, course of six weeks, when compared to diets a new meta-analysis paper without pulses. has looked into how pulses These are important findings indicating that could play a role in the pulses have a role to play in weight management regulation of body weight programmes. Now, more work is needed to understand how pulses exert these benefits. and composition.

Findings were pooled from 21 trials, a For more information, see: Kim SJ et al (2016). American total of 940 participants. Analysis showed Journal of Clinical Nutrition [Epub ahead of print].

Awareness Week 2016 - Is it coeliac disease?

From 9th to 15th May, Coeliac UK will be highlighting the most commonly reported symptoms of coeliac disease with a range of initiatives. Whether you have five minutes to give or 50, there’s a way for everyone to join in.

You can support Awareness Week online with a number of initiatives including the social media takeover ‘Thunderclap campaign’! After you pledge your support on Coeliac UK’s Thunderclap page on their website, a status featuring the key message, ‘Is it coeliac disease?’ will be sent out from your Twitter, Facebook and Tumblr account etc, during Awareness Week, as well as that of all our other supporters. Alternatively, why not take a ‘symptoms selfie’ to spread information about coeliac disease? Special selfie frames are available and the best selfies will be shared on Coeliac UK’s Twitter and Facebook pages.

There is a host of other initiatives and activities planned forAwareness Week, including pop-up events and a leafleting campaign. Awareness Week toolkits are available too. Visit www.coeliac.org.uk for full information.

ERRATUM Please note that the ingredients for Nutilis Clear in Table 1 of the article on Thickeners that appeared in NHD March 2016 (page 33) were listed incorrectly. The following ingredients are correct: Dried glucose syrup, Xanthan gum, Guar gum.

NH-eNews plus NHD eArticle with CPD

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www.NHDmag.com May 2016 - Issue 114

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PUBLIC HEALTH

SUGAR AND SALT: AN ADDICTIVE COMBINATION? Dr Mabel Blades Independent Freelance Dietitian and Nutritionist

Mabel is a Registered Dietitian, a member of the BDA and NAGE, Food Counts and Freelance Dietitians Specialist Groups.

All aspects of nutrition enthuse her and she is passionate about the provision of nutritional information to people to assist their understanding of any diet.

For full article references please email info@ networkhealth group.co.uk

With all of the attention being paid to sugar and salt reduction in the media coupled with a lack of understanding about the different types of sugar in food, dietitians are in a unique position to provide a sensible and balanced approach to both the media and their clients.

We eat food, of course, for various reasons, one of which is the flavour.

The receptors of the ‘taste buds’ found on the tongue and soft surfaces in the mouth,1 detect the five different tastes of salt, sweet, sour, bitter and umami.

Taste buds, except for those for salt, develop in the foetus during the first nine to 15 weeks of pregnancy and, thus, the foetus is exposed to flavours of the amniotic fluid which are derived from the mother’s diet. Strong foods, for example, like curry, will provide a strong flavour to the fluid.2 Babies are born with a love of sweet things which encourages them to take breast milk, but the taste buds for salt do not develop until about four months of age.

Nevertheless, a study has indicated that babies exposed to salty foods at an early age develop a liking for it.3 SALT (SODIUM CHLORIDE)

It has long been realised that excess sodium in the diet is a major public health problem in the UK, clearly linking with hypertension and cardiovascular events such as coronary heart disease and strokes.4 In 2002, The Food Standards Agency launched a campaign to reduce salt in the estimated 26 million people in the UK who had a high dietary sodium intake. It was estimated at that time that a 3.0g/day reduction in salt could prevent 30,000 cardiovascular events and save the National Health Service at least £40million/year.5

. . . a study has indicated that babies exposed to salty foods at an early age develop a liking for it.

The recommendations for salt intake are well publicised by easily accessed information such as that on NHS Choices.6 The maximum levels of salt advocated are: • 1 to 3 years - 2.0g salt a day (0.8g sodium) • 4 to 6 years - 3.0g salt a day (1.2g sodium) • 7 to 10 years - 5.0g salt a day (2.0g sodium) • 11 years and over – 6.0g salt a day (2.4g sodium) In November 2014 Public Health England revealed that hypertension affects one in four people, plus accounts for 12% of all visits to GPs.7 The food industry has also taken great steps to reduce the salt content of processed www.NHDmag.com May 2016 - Issue 114

9

PUBLIC HEALTH

food products since the late 1980s and the Food and Drink Federation reports on initiatives due to a partnership between the food industry and the Food Standards Agency. Reductions in salt of 25% in sliced bread, 43% reductions in branded breakfast cereals, as well as reductions in other food items are detailed.8 Such reductions by the food industry have brought benefits and the latest information from Public Health England in March 2016 announced that there has been a reduction in salt consumption for adults to 8.0g per day, showing a downward trend over the last 10 years.9 Interestingly, there are also other sources of salt, such as effervescent tablets, including vitamins, which can contain as much as a gram of salt per tablet and such sources of salt can be overlooked.10 SUGAR

Much media attention has focused on sugar over the last year with newspaper headlines on the related health issues and the recommendation to cut sugar consumption by half. This was initially based on the advice of the World Health Organisation (WHO) to reduce free sugars to 5% of energy intake.11 The SACN report on carbohydrates also advised that only 5% of dietary energy should be taken from free sugars12 due to the following: • High levels of sugar consumption is associated with a greater risk of tooth decay.

• The higher the proportion of sugar in the diet the greater the risk of a high energy intake.

• Drinking high-sugar beverages results in weight gain and increases the BMI in teenagers and children.

• Consuming too many high-sugar beverages increases the risk of developing Type 2 diabetes.

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The previous recommendation on sugar was to limit non-milk extrinsic sugars (NME) to 10% of total energy intake.13. However, the population never managed to achieve this level with the average intake of non-milk extrinsic sugars (NMEs) for adults of 11% and for children up to 15%.14 Therefore, how likely are they to achieve a maximum of 5% energy from free sugars?

In an article entitled Sugar Public Enemy No 1 (NHD Feb 2016 p12), Carrie Ruxton said that, “dietitians need to consider whether sugars are so detrimental to health that a monumental shift in eating patterns is justified”. This consideration of the suitability of such reductions was also spoken about by dietitian and nutritionist Azmina Govindji at a presentation on ‘Sugar - where are we heading?’ given at the SENSE meeting in London on 1st March 2016. Azmina also commented on the appropriateness of recommendations for the major reduction in sugar, as well as the fact that information on sugar from the SACN report had been the main focus, while the report also included advice to increase fibre intake which largely appears to have been neglected by the media.

Children, are already shown to have a high intake of NMEs, which includes a major contribution from the sugar in soft drinks.

Thus, for this group, a reduction in the sugar content of the diet can be hugely beneficial and awareness items such as the ‘Sugar Swap’ app from Change4Life17 can provide information in an appropriate and helpful manner to such a technology aware group, enabling them to make early choices about how to reduce sugar in their food and drink.

In the 2016 March Budget, the Government introduced a sugar tax for soft drinks. There will be two bands of taxes, one for total sugar content

. . . awareness items such as the ‘Sugar Swap’ app from Change4Life can provide information in an appropriate and helpful manner . . . enabling them to make early choices about how to reduce sugar in their food and drink. above five grams per 100 millilitres and a second higher band for the most sugary drinks with more than eight grams per 100 millilitres and this is due to come into force in 2018.15 The delay in introducing the sugar tax gives the industry time to respond in reformulating drinks.

Also in March 2016, the Eatwell plate was updated to the Eatwell Guide which gives clear information about foods and beverages containing sugar.16 For the general public there can be confusion about sugars and free sugars as food labels show total carbohydrate followed by the information on sugar without information about the nutritional benefits of the product. Thus, someone wishing to avoid sugar may mistakenly shun nutritious items such as fruit and milk due to the sugar content.

Much clearer information is needed for the public based on appropriate food choices rather than constantly trying to interpret food labels.

BLISS POINT

The term ‘bliss point’ can be used by the food industry to adapt the amounts of three critical ingredients in a recipe - salt, sugar and fat - to deliver just the right amount of palatability to a foodstuff and to make the consumer want to eat more. To quote celebrity chef Nigella Lawson, “Ticking off the holy trinity of sugar, salt and fat - salted caramel is the class A drug of the confectionery world!”17 That combination of sugar, fat and salt is deeply alluring, perhaps evidenced by the fact that 12 million people watched TV’s Great British Bake off which encourages many to try home baking in which sugar is a key ingredient. Sugar is thought to activate the pleasure (dopamine) pathways in the brain which may result in it being addictive too. Some people require regular consumption of sugar and, indeed, sugar is even

felt to be addictive by some people.18 But it is sugar and salt combined that gives maximum flavour and appeal evidenced by the everincreasing number of products on the market, such as salted caramel puddings and sweets, salted chocolate and salted sweet biscuits.

SUMMARY

It is clear that humans are born with a liking for sugar and also an appetite for salt can occur later.

Add to this the addictive quality of sugar, plus the desire for that bliss point in foods, as well as people being bombarded with various baking and cookery programmes, it is no wonder that people consume too much salt, sugar and fat with resultant consequences to health.

Advocating a drastic reduction of free sugar by both SACN and WHO to half the level which is already found to be a virtually non-achievable target may well result in simply an even wider gap of non-achievement. Fibre containing foods such as cereals may well require a little sugar to make them acceptable.

For the great majority of people, the limitation of free sugars is important to health, but it must be remembered that there are some individuals, such as older people with malnutrition, for whom sweet items are vital in encouraging them to eat. Some sports people rely on a diet higher in sugar to provide them with adequate calories to fuel the activity.

With all of the attention being paid to sugar reduction in the media, coupled with a lack of understanding about the different types of sugar in food, dietitians are in a unique position to provide a sensible and balanced approach to the inclusion of sugar and salt in the diet. Often, the whole discussion needs to be about portion sizes and dietary balance; as Mary Berry said in 2012, “Cakes are healthy too, you just eat a small slice”! www.NHDmag.com May 2016 - Issue 114

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cover story

THE ROLE OF VITAMIN D IN OLDER ADULTS Maeve Hanan Stroke Specialist Dietitian, City Hospitals Sunderland, NHS

Maeve works as a Stroke Specialist Dietitian in City Hospitals Sunderland.

She also runs a blog called DieteticallySpeaking. com which promotes evidence-based nutrition and dispels misleading nutrition claims and fad diets.

Vitamin D is essential to our health, especially in relation to bone health.

Older adults (generally defined as adults 65 years and older) have been identified as an ‘at risk’ group for vitamin D deficiency, but what are the current evidence-based recommendations for this population in terms of vitamin D? Vitamin D plays a vital role in preventing rickets in children and osteomalacia in children and adults by promoting calcium absorption, bone growth and bone remodelling; it also maintains serum calcium and phosphate concentrations to support healthy bone mineralization.1,2 Vitamin D is also involved in: cell growth, genetic coding and functioning, neuromuscular functioning, immune functioning

and reducing inflammation.3 There has been some inconclusive evidence which suggests an association between low vitamin D levels and diseases such as osteoporosis, diabetes, cardiovascular disease, tuberculosis, multiple sclerosis, preeclampsia and cancer.4 SOURCES OF VITAMIN D

There are two main forms of vitamin D: vitamin D3 (cholecalciferol) and vitamin

Figure 1: Vitamin D metabolism pathway

Source: SACN 2015 Draft Vitamin D and Health report, www.gov.uk/government/uploads/system/uploads/attachment_data/ file/447402/Draft_SACN_Vitamin_D_and_Health_Report.pdf

www.NHDmag.com May 2016 - Issue 114

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in the COMMUNITY Table 1: Dietary sources of vitamin D Food

Mean vitamin D content (μg/ 100g)

Fish Herring (grilled) Salmon (farmed, grilled) Salmon (farmed, steamed) Salmon (pink, canned in brine, drained) Salmon (cold & hot smoked) Mackeral (grilled) Mackeral (smoked) Sardines (grilled) Sardines (canned in brine, drained) Tuna (baked) Tuna (canned in brine, drained)

16.1 7.8 9.3 13.6 8.9-11 8.5 8.2 5.1 3.3 3.1 1.1

Eggs Eggs (whole, boiled) Eggs (yolk, boiled)

3.2 12.6

Meat Beef (rump steak, fried)

0.7

Fortified foods Bran flakes Cornflakes Rice cereal Fat spreads (reduced fat 62-75% polyunsaturated)

4.6 4.7 4.6 7.5

Taken from The Composition of Foods, 7th edition (Finglas et al, 2015) Source: SACN 2015 Draft Vitamin D and Health report: www.gov.uk/government/uploads/system/uploads/attachment_data/file/447402/Draft_SACN_ Vitamin_D_and_Health_Report.pdf

D2 (ergocalciferol). Vitamin D3 is synthesized from the action of ultraviolet B (UVB) rays with our skin; this is our main source of vitamin D and the reason it is often referred to as ‘The Sunshine Vitamin’. Vitamin D3 is also found in some dietary animal sources, such as oily fish, egg yolks and red meat. Vitamin D2 is found in plants and is formed via the action of UVB with the plant sterol ergosterol.4,5 The main circulating form of vitamin D is 25-hydroxyvitamin D [25(OH)D] which is produced in the liver.4 Conversion then occurs in the kidneys and the biologically active form of vitamin is produced, which is called calcitriol or 1,25-dihydroxyvitamin D [1,25(OH)2D].4 Vitamin D is added to certain foods such as fortified margarines and breakfast cereals (see Table 1) and can also be obtained from supplements, either in tablet form or from certain types of oral nutritional supplements (e.g. Ensure Plus Advance, Fortisip Extra, Nutriplen Protein etc).

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VITAMIN D REQUIREMENTS FOR ADULTS 65 YEARS AND OLDER

Previously, the Committee on Medical Aspects of Food and Nutrition Policy (COMA 1991/1998) only set dietary reference values for vitamin D for ‘at risk’ groups, such as pregnant women, breastfeeding women and adults over 65 years. However, based on evidence related to musculoskeletal health, the updated recommendations by the Scientific Advisory Panel on Nutrition (SACN) set the reference nutrient intake (RNI) for vitamin D at 10ug per day, as a ‘population protective’ level for the UK general population aged four and above; which includes those deemed ‘at risk’.4 SACN also defined serum levels of vitamin D (25(OH) D) as deficient when lower than 25nmol/L and sufficient when ranging from 50 to 125nmol/L.4 As vitamin D is fat soluble, excess intakes are stored in our body tissues. A guidance safe upper level for vitamin D of 25ug/day was set based on the risk of vitamin D toxicity which has been

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In the COMMUNITY Table 2: Serum 25(OH)D levels found in adults, (adapted from NDNS data)7 Population group

% with serum 25(OH)D below 25nmol/L (mean serum concentration)

19-64 years old 65 years and older

22.8% (45.4nmol/L) 21.0% (44.5nmol/L)

Men 19-64 years old Men 65 years and older

24.0% (43.5nmol/L) 16.9% (47.0nmol/L)

Women 19-64 years old Women 65 years and older

21.7% (47.3nmol/L) 24.1% (42.5nmol/L)

Men living in institutions Women living in institutions

38% (33.7nmol/L) 37% (32.5nmol/L)

19-64 years old from January to March 65 years and older from January to March

39.3% (34.8nmol/L) 29.3% (40.5nmol/L)

19-64 years old from July to September 65 years and older from July to September

8.4% (57.5nmol/L) 3.6% (50.5nmol/L)

Table 3: Mean intakes of vitamin D for UK adults (adapted from NDNS data)9 Population group

% mean intake of RNI (mean daily intake in µg)

19-64 years old 65 years and older

28% (2.8µg) 33% (3.3µg)

19-64 years old including supplements 65 years and older including supplements

36% (3.6µg) 51% (5.1µg)

Men living in institutions Men living in institutions including supplements

38% (3.79µg) 39% (3.87µg)

Women living in institutions Women living in institutions including supplements

33% (3.31µg) 34% (3.36µg)

associated with renal damage, cardiovascular damage and hypercalcaemia, which can lead to subsequent bone demineralisation.4 Although the evidence is less consistent, other reported adverse effects vitamin D toxicity include an increased incidence of falls and fractures, pancreatic and prostatic cancer and all-cause mortality.

VITAMIN D LEVELS IN UK ADULTS 65 YEARS AND OLDER

Many factors effect vitamin D exposure in the UK; for example, there is insufficient UVB light from mid-October to the beginning of April for cutaneous vitamin D synthesis, and minimal synthesis occurs outside of the time frame of 11am to 3pm due to UVB exposure levels.2,4,6 Other factors can contribute to low serum vitamin D levels, such as sun avoidance, sunscreen use, wearing concealing clothing, genetics, skin pigmentation, latitude, altitude, air pollution and cloud cover.4 16

www.NHDmag.com May 2016 - Issue 114

It has also been suggested that the ability of the skin to produce vitamin D decreases with age; however, it is unclear whether this is related to confounding factors such as minimal sun exposure or possible co-morbidities such as impaired liver or kidney function.4 NICE and SACN highlight ‘adults 65 years and older’ and ‘frail and institutionalised people as specific ‘at risk’ categories for vitamin D deficiency.2,4 The UK National Diet and Nutrition Survey (NDNS), which ran from 2008 to 2009 and 2011 to 2012, found evidence of a high risk of vitamin D deficiency across all population groups which was substantially effected by seasonal variation (see Table 2 for adult data).7 It is interesting to note that this survey did not find a lower serum 25(OH)D concentration in adults 65 years and older compared to adults aged 19-64 years.

The NDNS also found that those living in institutions, which are likely to include a large

Table 4: Percentage contribution of food groups to vitamin D intake for UK adults (adapted from NDNS data)9 Food group

% Contribution to vitamin D intake 19-64 years

65 years and older

Meat and meat products

30%

23%

Fortified fat spreads

19%

19%

Cereals and cereal products (from fortified breakfast cereals and baked goods using eggs and fortified fats as ingredients

13%

13%

Fish and fish dishes (mainly oily fish)

17%

23%

Eggs and egg dishes

13%

13%

Milk and milk products

5%

6%

Vegetables and potatoes

1%

0%

proportion of older adults, had significantly higher levels of vitamin D deficiency than the general population.

adults, but fish and fish dishes contributed a higher intake for adults age 65 years and older (see Table 4).

VITAMIN D INTAKES IN THE UK ADULTS 65 YEARS AND OLDER

VITAMIN D AND HEALTH OUTCOMES IN AN ADULTS 65 YEARS AND OLDER

The NDNS reported intakes below the RNI for vitamin D across all adult groups, it also found that adults 65 years and older had higher mean intakes of vitamin D than adults aged 19 to 64, both from food sources alone and food sources in combination with supplements (see Table 3).

According to this data, supplements seemed to contribute more to serum vitamin D levels for adults 65 years and older than those aged 19 to 64.7 As it is very difficult to achieve the RNI for vitamin D from dietary sources alone, in 2012 the UK Chief Medical Officers advised that, “people aged 65 years and over and people who are not exposed to much sun should take a daily supplement containing 10 micrograms of vitamin D”.8 As a follow on from this, due to evidence that a large proportion of the UK population are at risk of vitamin D deficiency, SACN have recommended that consideration be given to ‘strategies for the UK population to achieve the RNI of 10µg/d for those aged four years and older’.4 The individual food groups contributing to vitamin D intake were found to be quite similar across all adult age groups; however, ‘meat and meat products’ contributed a higher intake for adults aged 19 to 64 years than with older

Although the evidence is mixed, SACN report that there appears to be a benefit to vitamin D supplementation in adults over 50 years in relation to falls risk, muscle strength and muscle function. However, there was evidence of an increased falls risk in one randomised control trial when an annual high dose of vitamin D (12,500µg/500,000 IU) was administered.4 From the available evidence SACN conclude that low serum vitamin D levels (ranging from 4-20nmol/L) are associated with a higher incidence of osteomalacia in adults of all age groups; which suggests a benefit to vitamin D in this regard.4 However, this evidence is based on mainly cross sectional studies and case reports.

In adults over 50 years old, current meta-analysis evidence reports a small benefit of vitamin D supplementation in improving femoral neck bone mineral density; however, there was no benefit with bone mineral density in the spine or total hip found.4 Overall, vitamin D supplements have not been found to be beneficial in regard to fracture prevention in adults over 50 years; however, the evidence is conflicting and suggests that vitamin D, along with calcium, is more effective than vitamin D alone.4 SACN also found a possible protective effect of vitamin D supplementation www.NHDmag.com May 2016 - Issue 114

17

In the COMMUNITY on all-cause mortality; especially when used in combination with calcium supplementation.4 Currently, there is not enough strong evidence to support an association with vitamin D and cancer, CVD, autoimmune diseases, oral health, psychological conditions, infectious diseases, or age-related macular degeneration.

CONCLUSION

Vitamin D plays a clear role in musculoskeletal health; with recent evidence reporting a specific benefit of vitamin D supplementation for older adults helping to reduce falls and the risk of osteomalacia and also improving muscle strength and function.

As previous guidelines only address ‘at risk’ groups, an updated practical guideline for healthcare professionals to use in relation to advising vitamin D supplementation in adults would be useful for clinical practice; as recent research highlights a high risk of vitamin D deficiency across all adult population groups in the UK. As vitamin D deficiency can have a big impact on a person’s nutritional status and overall quality of life, this should be an important consideration as part of nutritional assessments and management plans. Correcting vitamin D deficiency is likely to become increasingly relevant to dietitians with the introduction of independent prescribing.

References 1 NIH Vitamin D Factsheet for Health Professional: https://ods.od.nih.gov/factsheets/VitaminD-HealthProfessional/ 2 NICE guideline PH56, Vitamin D: increasing supplement use in at-risk groups: www.nice.org.uk/guidance/ph56 3 Institute of Medicine, Food and Nutrition Board. Dietary Reference Intakes for Calcium and Vitamin D. Washington, DC: National Academy Press, 2010 4 SACN 2015. Draft Vitamin D and Health report:www.gov.uk/government/uploads/system/uploads/attachment_data/file/447402/Draft_SACN_Vitamin_D_ and_Health_Report.pdf 5 SACN 2007. Update on Vitamin D: www.gov.uk/government/uploads/system/uploads/attachment_data/file/339349/SACN_Update_on_Vitamin_D_2007.pdf 6 NHS Choices - How to Get Vitamin D From Sunlight: www.nhs.uk/Livewell/Summerhealth/Pages/vitamin-D-sunlight.aspx 7 National Diet and Nutrition Survey: results from Years 1 to 4 (combined) of the rolling programme for 2008 and 2009 to 2011 and 2012: www.gov.uk/ government/statistics/national-diet-and-nutrition-survey-results-from-years-1-to-4-combined-of-the-rolling-programme-for-2008-and-2009-to-2011-and2012 8 Vitamin D - advice on supplements for at risk groups - letter from UK Chief Medical Officers: www.gov.uk/government/publications/vitamin-d-advice-onsupplements-for-at-risk-groups 9 Appendix 2, Chapter 8 Dietary vitamin D intakes and plasma 25 hydroxyvitamin D concentration of the UK population tables: www.gov.uk/government/ uploads/system/uploads/attachment_data/file/447405/Appendix_2_-_Chapter_8_NDNS_intake_tables_.pdf

NHDmag.com . . .

. . . Your essential resource 18

www.NHDmag.com May 2016 - Issue 114

FOOD & DRINK

DYING FOR A DRINK: DEHYDRATION IN RESIDENTIAL AGED CARE FACILITIES Anne Wright Registered Dietitian, AM Dietetics

Anne has extensive experience in many areas of Dietetics including clinical roles whilst working in Australia as well as with the NHS in Higher Education. Anne is now a freelance practitioner with AM Dietetics

For full article references please email info@ networkhealth group.co.uk

20

Following sensational newspaper reports on the ‘scandal of dehydrated elderly rushed to hospital’ from residential aged care facilities (RACF) in England1 and with the release of the NHS England document 2015-2018 Guidance - commissioning excellent nutrition and hydration,2 last year, the spotlight has been placed very firmly on residential aged care facilities (RACF) and hydration.

Dehydration is defined as: ‘a state in which a relative deficiency of fluid causes adverse effects on function and clinical outcome’. In the elderly, being short of fluid is far more common resulting from limited fluid intake, and is reflected in raised osmolality.2 Dehydration in elderly people is particularly problematic and can lead to poor health outcomes such as constipation, poor oral hygiene, increased rate of infection, falls, medication toxicity and more frequent hospitalisation.

Dehydration in older people is preventable and can have a significant impact on quality of life. Many frail older people are not drinking sufficient fluid to maintain adequate hydration.

As a result, the risk of dehydration is increased in residents living in aged care facilities.3 In a recent UK study4 involving 21,610 subjects, it was found that the odds of dehydration being diagnosed at hospital admission from RACF were 10 times greater than in elderly subjects being admitted to hospital from their own homes. Residents in RACF with dementia, diabetes and kidney problems are at most risk of dehydration.5 Although inadequate hydration, along with malnutrition, is one of the most longstanding and pressing problems in nursing homes, there is little research on the prevalence either of borderline or overt dehydration.6 The current scope of dehydration in RACF in the United Kingdom is unknown, however, one recent study conducted in a single NHS

www.NHDmag.com May 2016 - Issue 114

Trust in 2015 found that one in five residents was clinically dehydrated.5 AT RISK ELDERLY

Adequate intake of ‘total water’ comes from the combined intake from drinking water, other beverages and food sources.

Approximately 60% of total water intake comes from fluids, 30% comes from moist foods and the remaining 10% is produced by the body’s metabolism.7 Optimal daily fluid intake depends on various factors, including weight, health status and energy expenditure, therefore; there is no single recommended daily intake (RDI) for adults.8 Some current guidelines suggest a minimum of 1,500ml of fluid daily for an older person.3 Elderly people are more at risk of suffering from dehydration for a number of reasons. These vary depending on each case. Age-related changes and problems put older people at increased risk of not drinking sufficient fluid to meet their daily requirements. With age, body water content decreases and with this decrease, the body becomes more susceptible to dehydration from the loss of a small amount of body water. There is also less renal mass with age, reflecting glomerular sclerosis and glomerular loss, with a consequent reduced ability to control the balance of both sodium and water, resulting in an increased incidence of dehydration.9 Fluid losses through diarrhoea, vomiting, diuretics, fever, sweating, heat and humidity can also contribute.

Table 1: Early signs of dehydration

Table 2: Consequences of dehydration in residents

Dry mouth

Increased hospitalisation

Thirst

Increased mortality

Confusion

Constipation

Headaches

Reduced cognition function

Darker urine

Falls

Reduced urinary output

Poor wound healing

Hypotension and dizziness

UTIs

Falls

Hyperthermia

Weakness

Orthostatic hypotension

Urinary tract infections Cramps Dry skin and loss of skin recoil time Irritability Fever Malaise Constipation

Limitations in oral intake can be due to reduced thirst sensation, dysphagia, (requiring modified fluids or food), reluctance to drink to manage incontinence, reduced cognition, poor mobility and reduced functional capacity, limited access to fluids and reliance on staff to assist with oral intake.

Residents who must be fed are at particularly high risk. Medications and polypharmacy can also contribute to dehydration risk.

Early recognition of dehydration is a priority and the key to a speedy recovery. Mild to moderate dehydration in elderly people can be easily missed. Often dehydration is not diagnosed in the elderly until they are admitted to hospital.5 In the older adult, dehydration often causes atypical symptoms which contribute to delayed recognition. Early (or mild to moderate) signs include dry mouth, thirst, confusion, headaches, darker urine, reduced urinary output, hypotension and dizziness, falls, weakness, fatigue, urinary tract infections, cramps, dry skin and loss of skin recoil time, fever, irritability, malaise and constipation. Confusion, constipation and falls are part of the very frequently occurring ‘geriatric giants’ and, therefore, their specificity as a single parameter is far too low to be useful in diagnosing dehydration.10 Classical signs of dehydration such as loss of skin recoil time, increased thirst and orthostatic hypotension, have a low sensitivity in older adults (60-75%).11

DEADLY CONSEQUENCES

Dehydration in the elderly can result in poor health outcomes. If not identified and treated, the health consequences are significant, even life-threatening. Several studies support that dehydration is associated with increased mortality rates among hospitalised older adults.3 In older adults with multiple comorbidities, dehydration can lead to more frequent hospitalisations.12 Dehydration can also result in comorbidities including urinary tract infections, constipation, impaired cognitive function, falling, orthostatic hypotension and poor wound healing.13 Over half of all nursing home residents are thought to be affected by urinary incontinence.

Many older people limit their fluid intake in an attempt to prevent urinary incontinence or the need to go to the toilet overnight, known as nocturia.

This strategy has little or no effect on these bladder symptoms and may worsen for some individuals.14 Reduced urine flow from inadequate fluid intake is one factor that puts the older person at greater risk of developing urinary tract infections.

Constipation is common in the long-term care setting because of limitations on patient mobility and food and fluid consumption.15 Constipation can be an indication of functional dehydration, an issue for elderly patients whose food and fluid consumption tends to be limited and for those who limit fluid intake to control urinary incontinence.

Hydration status and cognitive function in the elderly is an area which warrants more research. In healthy adults, being dehydrated by just 2% impairs performance in tasks that require attention, psychomotor and immediate memory and working memory tasks, as well as assessment of the subjective state.9 In the www.NHDmag.com May 2016 - Issue 114

21

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FOOD & DRINK elderly, dehydration has been associated with cognitive problems (i.e. confusion and impaired cognition).6 Falls can be associated with dehydration associated with resulting confusion and disorientation and/or postural hypotension.

Dehydration has been identified as a causative factor in fragility factors.16 Dehydration renders elderly skin vulnerable to infection or wounding resulting from trauma.

Dehydrated skin is less elastic, more fragile and more susceptible to breakdown. Dehydration can also contribute to delayed wound healing due to poor oxygen perfusion, essential nutrients not being delivered to the wound surface and draining inefficiency.

It has been shown that rehydration, has demonstrated a beneficial effect on conditions such as poor wound healing and hypotension.17 ADDRESSING THE PROBLEM OF DEHYDRATION

Prevention is key when managing dehydration in RACF. Adequate screening and training programs should be in place to assist early identification. Practical strategies should also be employed in RACF to ensure hydration targets are met.

The NHS England document 2015-2018 Guidance - commissioning excellent nutrition and hydration,2 recommends a strategy for commissioners for tackling the nutrition and hydration needs of the population which includes developing quality frameworks to support provider organisations in putting nutrition and hydration at the heart of care.

The reference (or gold) standard measurement for hydration is serum osmolality, assessed using blood samples.14 This method is considered invasive and costly. Dehydration in older people could be accurately identified as part of routine blood testing, according to a study from the University of East Anglia (UEA).5 Results from this study suggest that routine blood tests for sodium, potassium, urea and glucose could be used to screen for dehydration by putting the results of these tests through an ‘osmolarity equation’. Current screening for dehydration in RACF remains largely observational. RACF staff should be familiar with the recommendations outlined in the Francis report (2013),18 which

highlights the need for proper records to be kept of the food and drink supplied and consumed by older patients. Residents should be routinely monitored for signs of dehydration. A fluid balance chart should be started for all patients who are acutely unwell or considered at risk of dehydration.

Development of hydration policies in individual RACFs is a crucial component of interventions to prevent dehydration. These policies should be put in place with accompanying education and awareness programs for staff, residents and families.

Strategies which may be employed to reduce dehydration risk include: • Offer and encourage water and preferred fluids at each mealtime.

• When giving medicines, give with slightly larger volumes of water (or use standardised amounts).

• Encourage small sips through the day; individual pre-measured fluid targets can be useful.

• Provide hot drinks and consider drink variety (e.g. water and lemon), for residents who prefer hot drinks.

• Encourage morning fluid consumption for residents who are afraid of late night toilet visits.

• Use fluid intake tools - electronic and paper based records.

• Educate care givers and family regarding the importance of hydration.

• Ensure functional issues are catered for - e.g. glasses not too heavy, adapted cups, straws Provide physical assistance as needed - adequate staffing levels and time allocated to achieve this.

• Provide drinks during group and social activities.

• Encourage recognition and communication of dehydration symptoms.

Adequate hydration for residents in RACF should be considered a safeguarding issue. Ensuring adequate hydration for the elderly requires the involvement of the entire interdisciplinary team. The dietitian not only has a key role in developing malnutrition screening tools, local policies and education, but also in doing so for hydration in RACF. www.NHDmag.com May 2016 - Issue 114

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In the community

Siobhan Oldham Nutrition and Dietetic Co-Manager and Home Enteral Feed Team Lead Siobhan has 20 years’ experience in Dietetics and has led the Gloucestershire Hospitals NHS Foundation Trust (GHFT) Home Enteral Feeding Team (HEFT) since 2001. She also co-manages the Nutrition & Dietetic Department

For article information sources please email info@ networkhealth group.co.uk

HOME ENTERAL FEEDING: DEVELOPING THE GLOUCESTERSHIRE SERVICE TO SUSTAIN THE FUTURE The Gloucestershire Home Enteral Feeding Team (HEFT) is going through a rapid but exciting period of growth following recent testing and uncertain times.

Adopting Tuckman’s (1996) development phases of ‘forming, storming norming and performing’, has been key to the journey for our team to deliver the results we aspire to.

The service we provide is commissioned by Gloucestershire Clinical Commission Group (GCCG) through a block contract with Gloucestershire Hospitals NHS Foundation Trust (GHFT) that covers various healthcare services. The HEFT remains part of GHFT, but manages the commercial feed and ancillary supply contract day to day on behalf of GCCG, alongside the patient responsibility.

For too long the team struggled, whilst overall patient numbers grew organically, but the growth within specific patient groups and the associated increase in patient complexity allowed us to prove that change was needed to meet demand. We are delighted that the subsequent investment has resulted in additional recruitment, particularly as it has enabled the creation of a dedicated paediatric arm to the team and further recruitment is underway. We are also excited about the introduction of a comprehensive mobile IT platform, enabling us to deliver both efficiencies in working practices and the optimum HEFT service for the patients of Gloucestershire. The learning curve has been steep, but key to this whole

process has been working closely with GCCG to ensure that all service users were invested in our vision.

BACKGROUND

We had been reporting for several years that the HEFT had been under growing pressure from increased demand. In March 2012, the service reached crisis point and a decision was made to only operate a limited provision from that point. Levels of service, such as time between reviews, continued to decline through 2013 as patient growth continued at around 8% per annum. Our first step was to record the service at high risk on the Trust risk register.

In parallel, we had identified a caseload change from that used to originally size the team, with a significant increase in both paediatric patients and patients with learning disabilities (LD). We were able to prove that these two groups have a much higher than average impact on the team per patient than the average www.NHDmag.com May 2016 - Issue 114

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In the community

The measurement and communication of achievement to target remains a vital part of managing the service. Quantifying a service like ours isn’t always simple, but at a basic level is essential in the modern health service. adult patient. Our records showed that a paediatric patient will in general consume twice the HEFT resources of an adult patient and a LD patient four times. With such large and still increasing numbers of these patient types within our cohort, a requirement to develop and maintain specialist skills within the HEFT was indicated.

Table 1 demonstrates the numbers of patients in our current caseload and compares them by type to the number on the service at the time of the previous tender.

The variances are clearly visible, and we also noted an additional impact in an increase in the volume of patient turnover. Significant time is required to process a patient when they join or leave the service, and this naturally has a high priority, especially in the paediatric and LD cohorts.

We could also compare staffing levels against overall patient numbers over time. Figure 1 shows clearly and simply that the caseload per hour worked has increased significantly over time and was the cornerstone of the argument in our business case.

TARGETS AND KEY PERFORMANCE INDICATORS (KPIS)

The measurement and communication of achievement to target remains a vital part of managing the service. Quantifying a service

like ours isn’t always simple, but at a basic level is essential in the modern health service.

One example is that our HEFT aim is to make an initial home visit to all new patients to the service within 14 working days from receipt of handover. This is easy to report against and can then offer a comparison over time. Quantifying enhancements then also becomes simpler; for example, we have found it valuable for our coordinator to make telephone contact with the patient/carer within 48 hours of discharge.

Our coordinator uses a checklist to ensure that adequate supplies are provided on discharge, to triage any nursing or dietetic issues and to agree a date for the initial visit. We believe this action has helped to reduce patient anxiety and helps in identifying issues quickly ensuring planned rather than reactive intervention.

With regards to ongoing care, the team fully supports the CREST 2004, NICE 2006 and benchmarking indications that patients should be reviewed by home visit on a three- to six-monthly basis. Regular face-to-face follow-up consultations with patients ensure that the feed continues to be appropriate for the patient’s current condition and ongoing requirements, as well as monitoring their tube and stoma site for problems. We maintain that home visits remain an essential part of the patients review as it is important to undertake subjective global assessments of the patient and their living environments. This allows us to tailor

Table 1: Patient numbers - breakdown by condition Patient type

Patient numbers April 2010

Patient numbers March 2016

Head and neck cancer

54

54

Neurology

51

88

Other adult

89

70

Paediatric

64

122

Learning disability

37

74

26

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Figure 1: HEFT staffing and patient numbers

NB: The additional short-term injection to staffing in 2010 was used to assist with the implementation of the new feed contract.

Table 2: Patient caseloads per one wte specialist dietitian Adult

Paediatric

LD

Clinically Recognised Safe Caseload (CRSC)

100

50

25

CRSC with the correct IT platform

125

70

45

individual feeding regimens, to ensure feed and equipment are being stored correctly and that stock levels are appropriate.

Over the past few years, the HEFT continually refined their service processes, ensuring that they were as efficient and as cost effective as possible. Against the backdrop of increasing patient numbers and caseload complexity, the only way in which the team managed to continue to function was to reduce the level of service delivered.

KPI reporting clarified that the demand on the service had outstripped the capacity at even the lowest level of service delivery. Only an increase in resources would enable the team to deliver an effective service.

BUILDING A RESOURCE MODEL TO SUPPORT PATIENT DEMAND AND PATIENT INCREASE

Following the HEF service move on to the trust risk register, it became evident that more radical action was required in order to meet demand to expected levels of quality. The team’s first action was to reduce the clinical workload of the lead, enabling a strategically focused quality improvement project to commence.

Following collation of data, analysis showed a patient growth trend of around 8% per year from 2007 onwards. Discussions with stakeholders such as clinicians and the CCG were held that suggested the trend was likely to continue. To avoid the same issues occurring in the future we created a demand based model to initially cover staffing levels, but then developed it to also encompass non-pay cost such as travel expenses and assessment equipment. This model was shared with both the Trust and the CCG to enable management and financial expectations to be set.

The primary challenge when creating this model was defining a safe caseload for its dietitians. The team identified and focused on three primary patient types within our cohort adult, paediatric and LD - which was based on local knowledge, typical contact time and skill sets required. One key lever for us is that we have a disproportionately high level of LD patients in our county. This is mainly attributable to a large local provider of specialist further education and residential services for people with physical and learning disabilities and acquired brain injuries, many of whom transfer to and from our service several times per year. www.NHDmag.com May 2016 - Issue 114

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In the community

. . . the biggest lesson we’ve learnt on this journey is to never forget the importance of nurturing your team, especially during a period of rapid change. . . . Maintaining a positive environment and cohesive team ensures you strive for excellence.

We found that there were limited published caseload figures, so we reached out to other HEF services across the country asking for data in order to benchmark our service against other comparable trusts. That data indicated that a safe caseload would be less than half that managed per dietitian in the team! The team were confident though, and given support from a modern IT platform and the ability to specialise within the indicated larger team, they could take on a higher caseload and still meet or exceed all KPIs. Table 2 shows the patient caseloads that the Gloucestershire HEF service believes one whole time equivalent (wte )specialist dietitian should be expected to manage per type.

In addition to the dietetic categorisation, the model calculates other team members as a percentage of the wte of dietitians. This was historically set at around 60% for Enteral Nutrition Nurse Specialists (ENNS) and 30% for admin and clerical support (A&C) and this has worked well for our team, delivering that confidence to take on the higher caseload levels.

Staff management has also been modelled, given that the overall wte figures had grown, and we included time to account for the contract management tasks that are delegated by the CCG. We also ensured that the model remained flexible. As an example, we uncovered an increase in the average patient contact time due to a corresponding increase in patient complexity. Adding contact time as an input to the model meant that we were able to easily display tangible service options as part of a business case.

We have ensured that the model processes and output is formally reviewed annually by all stakeholders, using actual patient 28

www.NHDmag.com May 2016 - Issue 114

numbers as they become known at the end of the calendar year. This ensures that funding is released to staff through the following 12 months. For us, this forms part of the normal block contracting round that our Trust has with the CCG. That annual review of staffing levels includes detailed inspection of all KPIs agreed between the HEFT and the CCG, along with the caseload figures that drives them. This delivers confidence to all involved that the model properly reflects the service needs.

CONCLUSION

The HEFT feel that we have made significant steps towards improving the service provided to the patients in the county through working closely with our providers and CCG. Regular reviews with all stakeholders are essential to the success of any significant change and, while we have not managed to implement all that was set out within the initial business case, we continue to work with the CCG to reach this aim.

We prioritised the greatest areas of risk for the initial fund release which included Paediatrics and Nursing and both of these improved services are being well received by clinicians and patients alike.

Finally, the biggest lesson we’ve learnt on this journey is to never forget the importance of nurturing your team, especially during a period of rapid change. Our Chief Executive always reminds us that your staff will always be your greatest asset and we are very grateful to our local Learning and Development team who have supported us during this phase. Maintaining a positive environment and cohesive team ensures you strive for excellence.

CLINICAL

Marcela Fiuza Brito MSc, PgDip, RD Cardiothoracic Dietitian, Royal Brompton Hospital

Ione de BritoAshurst MSc, PhD, RD Nutrition Lead for the Trust, Royal Brompton Hospital

For full article references please email info@ networkhealth group.co.uk

Marcela is a Specialist Dietitian with a strong interest in research. She is a member of ESPEN and a spokesperson for the BDA.

Ione is the Governance and Safety Lead for R&T, Nutrition Lead for the Trust, as well as Adult Dietetic Professional Lead.

PARENTERAL NUTRITION AND ITS ROLE IN THE SURGICAL CARDIOTHORACIC PATIENT Nutritional management is increasingly recognised as an important component of perioperative care. Enhanced recovery programmes have become standard practice in major surgical centres and include components such as avoidance of preoperative fasting and re-establishment of oral feeding as early as possible after surgery. In this report we examine the use of PN in a critically ill patient who presented with GI complication following cardiothoracic surgery.

The majority of surgical patients will resume oral intake within one to three days of having surgery; therefore, only a minority of patients may benefit from artificial nutrition support, primarily those at high nutrition risk and those who develop complications.

Surgery is often associated with catabolism, thus, it is essential to provide nutritional support to those who cannot eat in order to prevent malnutrition. Malnutrition developing postoperatively has been shown to increase complications and mortality.1 Current international guidelines strongly recommend that enteral nutrition (EN) be used in preference to parenteral nutrition (PN) for nutritional support whenever the gastrointestinal tract is intact and functional.2,3 The most important situations where EN is contraindicated and, therefore, PN should be considered, are certain gastrointestinal (GI) complications. The latter are relatively uncommon in cardiothoracic surgery (1%-4%); however, when they occur, mortality rates are between 13.9% and 63%.4 The most common GI complications in thoracic surgery include GI haemorrhage, perforated ulcer and mesenteric ischemia.

case study A 68-year-old male was admitted to hospital for an elective coronary artery bypass graft (CABG). His past medical history included hypertension, hypercholesterolaemia and previous myocardial infarction.

Postoperatively, he suffered a cardiac arrest and required intraaortic balloon pump (IABP). Once haemodynamic stability was achieved, nasogastric (NG) feeding was initiated.

Two days later he presented with vomiting, abdominal distension and rising lactate.

Abdominal CT scan was suggestive of bowel ischemia. He underwent an urgent exploratory laparotomy and subsequent bowel resection with formation of a jejunostomy.

Approximately one metre of small bowel remained.

He was initially managed with standard therapy and PN was initiated on day six post CABG while the patient was in intensive care.

Blood results on the day PN was initiated is presented in Table 1 overleaf. www.NHDmag.com May 2016 - Issue 114

29

clinical Table 1: Biochemistry before TPN was initiated Case 1

Reference range

321

0 - 10

WCC (x 10 /L)

4.9

4.4 - 10.1

Sodium (mmol/L)

138

133 - 146

Potassium (mmol/L)

4.2

3.5 - 5.3

Urea (mmol/L)

6.5

2.5 - 7.8

Creatinine (umol/L)

68

60 - 120

Bilirubin (umol/L)

40

0 - 20

ALP (U/L)

46

30 - 130

GGT (U/L)

35

11 - 51

ALT (U/L)

24

8 - 40

CRP (mg/L) 9

Albumin (g/L)

19

35 - 50

Corrected Calcium (mmol/L)

2.18

2.20 - 2.60

Phosphate (mmol/L)

0.77

0.80 - 1.50

Magnesium (mmol/L)

0.91

0.7 - 1.0

NUTRITION SUPPORT

The stress response to surgery is characterised by hypermetabolism and hypercatabolism; therefore, it is essential to provide nutritional support to those who cannot eat in order to prevent malnutrition. The influence of nutritional status on postoperative morbidity and mortality has been well documented.6-9 Inadequate nutrient provision for more than 14 days postoperatively is associated with complications.10 In a study of surgical patients, a negative energy balance of >10,000kcal was associated with increased mortality.11 Current international guidelines strongly recommend that, when nutrition support is indicated, EN be used when possible.12,13 In patients in whom EN cannot be initiated, evidence-based recommendations14 support PN, despite an association with increased infectious complications.15 The optimal timing for initiating PN remains unclear and guidelines vary depending on the patient’s clinical condition and nutritional status.

The guidelines of the European Society of Parenteral and Enteral Nutrition (ESPEN) recommend that PN should be considered within two days after admission to ICU for patients who cannot be adequately enterally fed.14 Conversely, in cases of postoperative complications 30

www.NHDmag.com May 2016 - Issue 114

impairing gastrointestinal function, they recommend that PN should be considered for patients who are unable to receive or absorb adequate oral/enteral feeding for at least seven days.2 In line with the latter, the American and Canadian guidelines suggest that, where there is no evidence of protein-calorie malnutrition, PN should be initiated only after seven days of hospitalisation.13,16,17 Providing PN to patients who do not meet criteria for malnutrition potentially accrues the added risk of infectious complications without the favourable outcome benefits of caloric replacement.15 Recently, the Impact of Early Parenteral Nutrition Completing Enteral Nutrition in Adult Critically Ill Patients (EPaNIC) study compared early versus late initiation of PN and concluded that late initiation of PN was associated with faster recovery and fewer complications in all patients groups, including a large cohort of patients who had undergone cardiac surgery.18 In the case study presented here, EN was contraindicated and PN was started on day six post-surgery while the patient was in intensive care.

NUTRITION REQUIREMENTS

The surgical critically ill patient is likely to be in a hypercatabolic state characterised by

Hyperalimentation, especially from carbohydrate sources, has been associated with hyperglycaemia, increased metabolic stress, hyperdynamic respiratory response and increased respiratory quotient. insulin resistance, increased oxidative stress and neuroendocrine alterations. This provokes muscle protein breakdown that exceeds synthesis and lipolysis in adipose tissue, which, coupled with insulin resistance, results in an abundance of circulating endogenous nutrients.12-14 Catabolism in critical illness is not caused by lack of nutrition but by the catabolic hormonal environment. Provision of exogenous nutrients does not actually suppress gluconeogesis and will not completely avoid muscle wasting.12-14 Hyperalimentation, especially from carbohydrate sources, has been associated with hyperglycaemia, increased metabolic stress, hyperdynamic respiratory response and increased respiratory quotient.21 A caloric intake of 36kcal/kg/day in critically ill patients compared to European recommendations of 2025kcal/kg/day, was associated with increased rate of infections and ventilator requirements due to overfeeding.22 Furthermore, hypocaloric feeding the non-obese critically ill surgical patient receiving PN has been shown to improve insulin sensitivity and avoid the adverse effects of overfeeding.23 Post hoc analysis of the EPaNIC study suggested a dose-response relationship between increased amount of PN and increased rate of infection.19 The more recent Calorie Trial found no difference in 30-day mortality when early nutrition support was delivered via EN or PN in critically ill adults.20 Their findings potentially support the hypothesis from the EPaNIC study that, among patients receiving parenteral nutrition, the dose is more associated with harm rather than the route of delivery.

Accurately measuring caloric and protein requirements is challenging. Resting energy expenditure can be measured with the use of indirect calorimetry, or more conveniently, with simplistic methods of kcal/kg as recommended

by international associations.14 Providing calories near target (80-90%) is recommended,24 as negative energy balance indicates a poor prognosis and increased morbidity.25 Once caloric requirements are determined, it is important to determine macronutrients requirements: proteins, carbohydrates and lipids.

It is well established that protein energy malnutrition (PEM) occurs in up to 50% of surgical patients.1 PEM is associated with skeletal-muscle weakness, increased infection rate and prolonged ICU stay.17 Multiple factors contribute to protein loss in the surgical critically ill patient: the metabolic insult itself, wounds, bed rest, and certain medications (paralytic drugs, sedatives, inotropic agents).

These contributors result in mobilisation of labile protein from skeletal tissue, connective tissue and the non-stimulated gastrointestinal tract.26 Therefore, sufficient protein needs to be provided post operatively, to maximize protein synthesis aiming to meet or match catabolism. To estimate protein requirements, a simplistic weight-based calculation can be used, where protein needs can be determined by 1.2-2.0g/kg/day.14,17 There is no evidence that overfeeding nitrogen has deleterious effects as long as patients are not generally hyperalimented.27 Glucose is a convenient and readily available energy source; yet, excess intake has been associated with potential deleterious effects. For example, hyperglycaemia in PN-fed patients is associated with increased risk of pneumonia (OR 3.1; 95% CI 1.4-7.1) and acute renal failure (OR 2.3; 95% CI 1.1-5.0).28 Conversely, tight glycaemic control has been shown to reduce morbidity and mortality in critically ill patients.29 Therefore, recommendations are for glucose to provide 70-85% of non-protein calories in PN, with a minimal of 2.0g/kg/day14 without exceeding 7.0g/kg/day.30 www.NHDmag.com May 2016 - Issue 114

31

clinical The inclusion of lipids in PN regimens may avoid the negative effects of hyperglycaemia on clinical outcomes. For example, a prospective open-labelled trial of 33 multiple trauma patients examined the effects of PN lipid-based nutrition compared to a standard glucose-based nutrition. The lipid group had significantly lower energy intake (17.9 vs 22.3kcal/kg), blood glucose (7.4 vs 8.7mmol/l), carbon dioxide production, minute volume and shorter duration of mechanical ventilation (13.0 vs 20.4 days) and stay in the ICU (17.9 vs 25.1 days).31 In a PN regimen, recommendations are for lipids to provide 15-30% of non-protein calories30 with a minimum of 0.7g/kg/day to a maximum of 1.5g/kg/day.14 THE FEEDING PROCESS

Nutritional assessment has three key indicators:32 • actual body mass index (BMI) • recent weight loss (three to six months) • recent decrease in nutrient intake Nutritional assessment in this case study showed a weight of 73kg, BMI=29kg/m2 and no history of weight loss or reduced intake prior to surgery. Enteral feed was started on day one post CABG, with a polymeric iso-osmolar formula as per local protocol. Following bowel resection on day three, the patient was placed NBM; PN was commenced on day six post CABG at half rate and progressed to meet 80% of calculated requirement in two days.

Phosphate was replaced prior to commencing PN and blood levels closely monitored.

Other refeeding bloods (K, Mg, Ca) were also monitored daily. PN regimen (Nutriflex Lipid Special® (C) - B. Braun) incorporated on average 270g carbohydrates, 1.0g/kg lipids and 1.3g/kg of protein.

Clinical guidelines agree that in the early phase post massive enterectomy, PN is needed in order to maintain nutrient and fluid balance, but not necessarily in isolation.33-35 Patients with a short bowel should receive 25-33kcal/ kg depending upon stoma output.35 ESPEN recommends that enteral/oral nutrition should be introduced and progressively increased depending on gut tolerance. In this case, enteral 32

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nutrition was restarted on day seven at a trophic rate. We were unable to increase feeding rate further due to high stoma output (>3L/day) despite optimal dose of a proton pump inhibitor and Loperamide.

For patients with a jejunostomy and total small intestinal remnant less than 100cm, which was the case here, PN is essential for survival.33-35 In such circumstances, it is unrealistic to assume that intestinal adaptation will happen to an extent that will allow the patient to rely on enteral nutrition. The patient in this case was transferred to a gastro unit on day 22 to be established on home PN. On transfer, the patient’s weight was 68.4kg; there was a weight loss of 6% which is relatively small for critical illness. Despite the physiological complications of muscle weakness, at transfer, the patient was independent with all personal care.

CONCLUSION

Most elective surgery patients do not need nutrition support. Those who do require it are usually the patients who develop complications.

Surgery provokes a series of reactions such as release of inflammatory mediators and stress hormones placing the body in a catabolic state.

Provision of nutrients is crucial to support healing and rehabilitation.

EN when feasible is the first choice of therapy. Several factors have been identified as barriers for early initiation of EN post cardiothoracic surgery, often inappropriately, including fear of aspiration, haemodynamic instability and possible need for preoperative intervention. When EN is a real contraindication, international guidelines agree that PN should be considered.

There is debate regarding the optimal timing for the initiation of PN and macronutrient composition of the PN bag, particularly in patients who are critically ill. In the patient example reported here, PN was started late (day six) and nutrients were provided to match the patient’s requirements at the end of the first week in order to minimise endogenous amino acid unitisation, reduce weight loss and promote recovery. This case illustrates the potential benefits of PN in the management of complex cardiothoracic surgical patients.

PAEDIATRIC

FALTERING GROWTH Jacqui Lowdon Paediatric Dietitian - Team Leader Critical Care, Therapy & Dietetics, RMCH Presently team leader for Critical Care and Burns, Jacqui previously specialised in gastroenterology and cystic fibrosis.

Although her career to date has focused on the acute sector, Jacqui has a great interest in paediatric public health.

Faltering growth (once referred to as failure to thrive) describes a significant event or a variation from the usual pattern of the expected rate of growth, usually during early childhood, when compared to children of a similar age and sex. It tends to be applicable to young children, especially babies and toddlers, rather than older children/adolescents. It is a descriptive term and not a disease or condition and any underlying cause must be considered.

Using the 2009 UK-World Health Organisation (WHO) growth standards, an infant or child’s weight, length/height and head circumference can be plotted to provide a visual representation of their growth over time. Epidemiological studies have shown that healthy children usually progress relatively consistently along a growth centile. This is still the best marker for diagnosis.1 It is suggested that using these growth charts, a sustained drop of weight through two or more centiles is not a normal pattern and so requires careful assessment.2 Less than 2% of infants show a sustained drop through two or more weight centile spaces on the new UK-WHO charts.

Accurate measurement of length/ height in young babies and toddlers can be difficult, so successive measurements can show a wide variation. It is, therefore, important not to place too much reliance on single measurements or apparent changes in centile position between just two measurements. If there are concerns about growth, it is better to measure

on a number of occasions to try to get a sense of the child’s average centile.

Healthy children will generally show a stable average position over time. If there does appear to be a consistent change in centile position by more than one centile space for height, the child should be assessed in more detail.

All children below the 0.4th centile should be assessed by a paediatrician at some stage, even if apparently growing steadily.2 Height centile should also be compared to parental height.

Other patterns of faltering weight, suggesting under nutrition, have also been identified (Table 1).

Head circumference is particularly useful in the first two years. The centile position can show some variation over time, but most measurements track within one centile space. Less than 1% of infants drop or rise through more than two centile spaces after the first few weeks. Mid upper arm circumference (MUAC) is also a useful measure <5.0 years of age. It indirectly assess nutritional status by estimating body fat and muscle mass (Table 2 overleaf).

Table 1: Patterns of faltering weight (Clinical Paediatric Dietetics 4th Edition) Sustained weight falling through two or more centiles Weight noted to be <C 2nd Plateauing and further centile weight loss Sawtooth pattern of fluctuating weights on lower centiles, where weights cross and recross centiles Discrepancy between height and weight >2.0 centiles www.NHDmag.com May 2016 - Issue 114

33

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www.NHDmag.com May 2016 - Issue 114

34

PAEDIATRIC Table 2: Mid upper arm circumference (MUAC) one to five years3 <14.0cm - Very likely to be a significantly malnourished child 14.0-15.0cm - May be malnourished, likelihood greater if age nearer to five years than one year old >15.0cm - Nutrition likely to be reasonable

Table 3: Organic factors contributing to growth faltering Inability to digest/absorb nutrients, e.g. cystic fibrosis Excess loss of nutrients, e.g. chronic diarrhoea Increased requirements due to underlying disease state, e.g. cardiac/respiratory failure Reduced intake, e.g. swallowing difficulties Inability to fully utilise nutrients, e.g. metabolic disease

Table 4: Factors contributing to faltering growth Delayed/problematic introduction of complementary foods Early feeding difficulties Poor appetite post illness Negative parental attitudes towards food and eating Behavioural difficulties, such as force feeding Poor parenting skills Poor parent education around feeding/nutrition Poor parental health Family dysfunction, e.g. no mealtime routine, chaotic lifestyle Neglect

As well as growth, there are other features that might be linked with poor growth: (Clinical Paediatric Dietetics 4th Edition) • muscle wasting • poor skinfold thickness • thin, wispy hair • prominent bones, e.g. pointed chin in a baby • pale complexion, e.g. iron deficiency • poor sleep pattern In practice, infants and preschool children are often identified by routine growth monitoring, with others being identified through concern expressed by parents or healthcare professionals.

CONTRIBUTORY FACTORS

Faltering growth can occur when a child’s energy requirement is not met by their nutritional intake.

Under nutrition is recognised as the primary

cause of poor weight gain in infancy,4 with only 5% of cases having an underlying medical diagnosis (Table 3).

EARLY FEEDING PROBLEMS

In early childhood faltering growth may be associated with persisting problems with appetite and feeding.5 Feeding difficulties are the most commonly given reason.6 It often occurs around the introduction to complementary foods, when oro-motor skills are developing and new tastes and textures are being introduced. However, behavioural feeding problems can occur at any age, with many contributory factors.7 Table 4 lists possible contributory factors.

MANAGEMENT

For those children with faltering growth who do not have any specific underlying cause other www.NHDmag.com May 2016 - Issue 114

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PAEDIATRIC Table 5: Infant feeding: observations and questions for assessment Babies/infants Does the infant appear content with the feed, or dissatisfied and craving more, or uninterested?

Note how the mother interacts with the child. Is she caring and concerned or cold and distant?

Ask about the frequency of wet and dirty nappies.

Ask about the nature of the stool; remember that it is highly variable in quality and quantity in small babies, especially if breastfed.

If bottle fed, is the feed made up properly?

Toddlers/older children Where is the child positioned to the parent when being fed?

Is the child interested in its own food or others?

Ask about quantity/texture/type of food offered – is it appropriate for the child?

Does the child prefer to feed themselves? Can they feed themselves? What are the child’s oro-motor/selffeeding skills?

Is the parent responsive to the child’s cues, verbal and non-verbal?

Is there any +ve communication between the child and parent?

How long does the mealtime last for?

Ask about the frequency of food offered and the mealtime routine Ask whether mealtimes are stressful; what is the atmosphere/emotion at mealtimes?

Who else feeds the child and how does the child respond with them?

than under nutrition, initial management is often community based. This can be managed by advice and support given to the family by a health visitor, with support from the community paediatric dietitian. The role of the dietitian is to assess nutritional adequacy and clarify any dietary concerns. If faltering growth continues, then a referral to a multidisciplinary team is advocated.8 Dietary Assessment A complete picture of all aspects that affect the child’s feeding is required. This will include dietary recall or completion of a food diary, as well as observation of feeding, a complete feeding history, shopping habits and food preparation.

Table 5 includes suggested questioning/ observations around feeding.

Nutritional management requirements A useful formula to predict energy requirements to improve weight gain has been proffered:9 Kcal/kg = 120 x ideal weight for height (kg) actual weight (kg)

Achieving requirements The main objectives are to improve energy and protein intake, optimise growth and correct nutritional deficiencies, e.g. iron deficiency, zinc deficiency. Table 6 provides some treatment strategies.

Supplements Dietary supplements are not normally recommended for children with no medical cause for faltering growth as there is the risk that they will medicalise the problem. However, they can be of use for children who are unable to meet their requirements from food alone.

Their use can also provide reassurance for the parents, whilst working on the behavioural issues. The advice given in Table 6 overleaf still applies.

PROGNOSIS

As a rule of thumb, if small babies double their birth weight in four months and triple it in a year, they will generally catch up. A systematic review concluded that the long-term outcome of faltering growth is a reduction in IQ of www.NHDmag.com May 2016 - Issue 114

37

PAEDIATRIC Table 6: Treatment strategies for toddlers/older children Dietary

Behavioural

Regular three meals and two snacks/day (Young children do not have large enough stomachs to cope with big meals).

Parents should eat at the same time as the child.

Increase number and variety of foods offered.

Offer meals at regular times with other family members.

Use energy dense foods.

Limit a meal’s time to 30 minutes.

Increase energy density of food, e.g. add cheese/ margarine/cream.

Praise when food is eaten, but ignore when not.

Limit milk intake to 500ml/day.

The child should never be force-fed.

Avoid excessive intake of fruit juice and squash (can cause toddler diarrhoea and make the child feel too full).

Mealtime conflict should be avoided.

about three points, which is not of clinical significance.10 However, nutrition in the early years is crucial for long-term health.11 Poor growth is also an important marker for an intervention where there is neglect, a medical condition, developmental problems, or feeding issues.12 SUMMARY

Childhood nutrition is a balance between the high energy and nutrient requirements required for optimal growth and developing and establishing a healthy eating pattern for future health. The routine and appropriate use of growth charts is essential to allow for early identification and intervention. Many factors contribute towards faltering growth.

The mainstay of management is to provide

support and advice to increase calorie intake and manage challenging feeding behaviour.

Further reading • The Healthy Child Programme describes standards of care for screening and providing advice during pregnancy and the first five years of life. It includes broad recommendations on monitoring growth in infants and children.

• The NICE guideline on Maternal and Child Nutrition make recommendations for growth monitoring in infants and children.

• NICE guideline scope: Faltering growth in children: recognition and management. The guideline is expected to be published in October 2017.

References 1 Raynor P, Rudolf M Anthropometric indices of failure to thrive Arch Dis Child, 2000, 82 364-5 2 The Royal College of Paediatrics and Child Health UK - WHO growth charts, 2009. www.growthcharts.rcpch.ac.uk. Accessed April 2016 3 Hobbs CJ, Hanks HGI, Wynne JM. Child Abuse and Neglect: A Clinician’s Handbook. Edinburgh: Churchill Livingstone, 1999 4 Skuse D. Non organic failure to thrive: a reappraisal. Arch Dis Child, 1985, 60 173-8 5 Blissett J, Harris J, Cunningham J et al. Faltering growth: a case study and recommendations for practice Community Practitioner, 2002, 11 424-7 6 Wright C, Birks E. Risk factors for failure to thrive: a population-based survey. Child Care Health Dev, 2000, 26 5-16 7 Harris G, Booth IW. The nature and management of eating disorders in pre-school children. In: Cooper P, Stein A (Eds) Monographs in Clinical Paediatrics; Feeding Problems and Eating Disorders. Chur, Switzerland: Harwood Academic, 1991 8 Hobbs C, Hanks HGI. A multidisciplinary approach for the treatment of children with failure to thrive. Child Care Health Dev, 1996, 22 273-84. Blithoney WG, McJunkin J, Michalek J et al. The effect of a multidisciplinary team approach on weight gain in non-organic failure to thrive children. Dev Behav Pediatr, 1991, 12 254-8 9 Maclean WC, Lopez de Romana G, Massa E et al. Nutritional management of chronic diarrhoea and malnutrition: primary reliance on oral feeding. J Paediatr, 1990, 97 316-23 10 What is the long-term outcome for children who fail to thrive? A systematic review. Arch Dis Child. 2005 Sep; 90 (9): 92 Rudolf MC, Logan S. 5-31.

Epub 2005 May 12 11 Barker DJP. The fetal and infant origins of adult disease. Br Med J, 1990, 301 1111 12 Black MM, Dubowitz H, Krishnakumar A et al. Early intervention and recovery among children with failure to thrive: follow-up at age 8. Pediatrics, 2007, 120 59-60

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J Pediatr 1992; 120: 569-572. 6. Brun AC et al. Clin Nutr Sept 2011; doi: 10.1016/j.clnu.

2011.07.009. 7. Bentley D et al. Paediatric Gastroenterology and Clinical Nutrition 2002, London, UK: Remedica Publishing. 8. Goulet O et al. J Pediatr Gastroenterol Nutr 2004; 38: 250-269. 9. Clarke SE et al. J Hum Nutr Diet 2007; 20: 329-339.

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CONDITIONS CONDITIONS & & DISORDERS disorders

EATING DISORDERS: WORKING WITH ADOLESCENTS Priya Tew Freelance Dietitian and Specialist in Eating Disorders

Priya runs Dietitian UK (www.dietitianuk. co.uk), a freelance dietetic service that specialises in eating disorder support. She works with NHS services, The Priory Hospital group and private clinics, as well as providing Skype support to clients nationwide. She also works with the media and with brands.

Adolescents with eating disorders are very different to work with and need a thoughtful, skillful approach. Careful interviewing skills are needed to build the relationship, with the first step being engagement. Some adolescents will initially present as uncommunicative and hostile, or they may lack the confidence and communication skill set. Helping them feel secure enough to open up and breaking down the barriers is a big step.

This can mean that instead of launching into a usual dietetic patter, it may be best to skirt around the edge of the subject. Questions such as, “What is your favourite food?” or “Do you enjoy cooking?” can open up conversations around food without being too challenging for the patient. Using appropriate language is important as is showing that you empathise and are there to listen.

Creativity is key; aiming to bring some fun into sessions and having a good sense of humour is important and it can be helpful to have an activity ready to engage the patient (see Table 1).

Taking part in meal support can be a great way to see how an adolescent copes and can highlight where their anxieties lie. It can also be a way to gain their trust and many like to see what dietitians eat!

Working with adolescents also means working with their families and carers. This can prove to be complicated.

Each family member can give altered viewpoints and report eating patterns as different. The family dynamics are important to understand and consider.

Working within a therapy team becomes highly valuable as this will enable an insight for the dietitian into how best to work with the family and how interactions occur. For example, if 40

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mum is known to be over-controlling then it may be better to work with the adolescent on how they can take more responsibility for their meal plan. It can be helpful to have an initial session with a parent present, or to have sessions where the parent is present for the first part and then have some time with just the patient. Setting boundaries makes the patient and their family feel safer.

So explain how the session will work and what is expected of them. How will weighing work and do they need to keep a food diary? What rate of weight gain is aimed for and what happens if this is not met? Setting some ground rules around what happens if someone gets upset or angry is important and how to call a timeout.

There are often incorrect food beliefs that need to be challenged. Use of food models, pictures, or the traffic light system (see Table 1) can help show the dietitian what thought processes are going on. Are carbohydrates foods the main ones being avoided? If so, a session exploring the role of carbohydrates and thinking about why some are seen as ‘unhealthy’ will help. Validation is key: explain why you understand what the client believes, but then break down the science to show that their beliefs may not be correct. This patient group are usually thirsty for knowledge, but won’t ask for it. They want you to see into their minds and be understood.

Taking part in meal support can be a great way to see how an adolescent

Table 1: Activities to engage the patient Activity

Description

A table of foods

Get the patient to describe how each food makes them feel and explore why.

Role play

Pretend it is a meal plan and get the patient to be the carer and you the patient, then reverse roles. You can also do this with the carer and patient. It can be a great way to think through what goes wrong at meal times and come up with strategies to help relieve tensions and anxiety.

Traffic light foods

Rank a list of foods into red/amber/green for high/ medium/low anxiety foods. This can provide a useful place to plan food challenges and can be good to revisit at a later date to see what progress has been made.

Ranking fear foods

Ask the patient to write out a list of foods that cause them anxiety, then rank these from high to low. Work through the list finding out why the foods cause anxiety and use this as a way to challenge incorrect food beliefs and give education.

Design your favourite meal

If you could eat any foods with no anxieties what would you have? This can be a wonderfully creative activity to think about the foods they used to love and meals that hold happy memories.

Meal plan design

Hand out a meal plan and ask the patient how they would change it to make it a weight gain meal plan and a weight loss meal plan.

Invite me for dinner

If I, the dietitian, was coming to your house for dinner, what would you cook me and how much would you serve me?

Portion size cups

Using a plastic cup and a range of foods, weigh out ideal portion sizes, measure into the cup and mark them. These can then be used at home for portion control.

Food challenges

Present a list of food challenges that can include eating out, pizza with friends, sweets at the cinema and use these to come up with a list for the adolescent. Help them explore the things that they are missing out on socially and the foods they wish they could allow themselves to eat.

copes and can highlight where their anxieties lie. It can also be a way to gain their trust and many like to see what dietitians eat! If you can’t be present at an actual meal, then talking through what happens at meal times and how anxiety presents is a useful tool. If the anxiety comes when faced with a food, you can help that person come up with distraction techniques and calming suggestions. After a meal, discussing what helps deal with the

thoughts and guilt, planning in relaxation times and helping them normalise their feelings is key.

As a dietitian working in this area, you need to be ready to think on your feet and to change the direction of a session at any time, or cut a session short. There can be a bigger issue to discuss that suddenly comes up; in which case, follow the lead. However, also remember that there can be red herrings. That www.NHDmag.com May 2016 - Issue 114

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CONDITIONS & disorders Table 2: Creating effective sessions

Weighing

How often will it happen?

Clothing and shoes?

Toilet beforehand?

Eat/drink before or after?

Will the weight be discussed?

Who will it be shared with?

What happens if it goes up/down, or is the trend more important than the individual weight?

Session length/frequency

Shorter more frequent sessions can work better.

Who will be present?

Will family/carers be present and if so, for how much of the session?

What needs to be done between sessions?

Set clear goals that are written down or emailed.

How will a food diary be kept? An app or list on a mobile phone?

Any worksheets/education sheets?

Contact between sessions

Will this occur and if so, how often and by what route?

Time out in sessions

If a patient needs a break, then how can they signal this?

What behaviour is not acceptable in a session?

Who to ask for help

If they are struggling at home, who is the person to ask for help?

How is this support best provided?

Should they alert you?

The wider team

Who is responsible for which part of the patient’s care?

Table 3: Take-home tips Be creative and innovative.

Take time to build the relationship first.

Listen lots and let them talk.

Set ground rules and boundaries.

Use activities to engage and draw out information.

Challenge incorrect food beliefs.

Be ready to deal with emotions and upset.

Plan in good supervision.

sudden need to discuss the role of proteins may be to prevent you making an increase to the diet plan. Emotions can run high, so the ability to help someone work through these, to contain them and to calm them, is important to learn. Another essential component of this work is having good supervision; this doesn’t have to come from a dietitian; an experienced therapist or psychologist can give a great insight into your work that you would not otherwise get.

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Summary

Working with adolescents who have eating disorders can be a challenge. Dietitians need to be thoughtful and take a caring and skillful approach. It takes time to build a trusting relationship with a client in these circumstances.

But, with the right techniques and careful planning, you can engage the patient and manage all the challenges and issues involved.

Sessions can be fun and creative, providing the right environment for progress and healing.

THIS IS HUGE After months of coping with the sleepless worry and heartbreaking cries of his cow’s milk allergy, suddenly, a little moment like this doesn’t seem so little after all.

• Proven efficacy – hypoallergenic and has been shown to relieve symptoms1,2 • Proven to be well tolerated – 96% of infants tolerated Similac Alimentum3 • Palm oil and palm olein oil free – supports calcium absorption and bone mineralisation4 SIMILAC ALIMENTUM. FOR BIG LITTLE MOMENTS.

REFERENCES: 1. Sampson HA et al. J Pediatr 1991;118(4): 520-525. 2. Data on file. Abbott Laboratories Ltd., 2013 (Similac Alimentum case studies). 3. Borschel MW and Baggs GE. T O Nutr J 2015;9:1-4. 4. Koo WWK et al. J Am Coll Nutr 2006;25(2):117-122.

IMPORTANT NOTICE: Breastfeeding is best for babies, and is recommended for as long as possible during infancy.

Similac Alimentum is a Food for Special Medical Purposes and should be used under the supervision of a healthcare professional.

Date of preparation: July 2015 RXANI150143

CONDITIONS & DISORDERS

Coeliac disease and the gluten-free diet Anne Roland Lee, EdD, RDN, LD Nutritional Services Manager, Schar USA. Anne has published a variety of research articles and has developed numerous educational materials on the gluten-free diet for patients and both clinical and food service professionals.

Anne is a member of the AND Gluten Intolerance Work Group which developed the Gluten Intolerance tool kit and the Certificate of Training for Gluten Related Disorders.

For full article references please email info@ networkhealth group.co.uk

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Coeliac disease is a genetically mediated autoimmune disease that affects 1% of the population worldwide. The only treatment for coeliac disease is lifelong adherence to a strict gluten-free diet (GFD). Despite the current interest in the gluten-free diet, coeliac disease remains under-diagnosed and the diet is often misrepresented.

Historically, coeliac disease was thought to be a rare childhood illness that the affected individuals would eventually outgrow. Today we know that coeliac disease can be diagnosed at any time along the lifespan and, once triggered, the condition requires lifetime adherence to the GFD. As yet, researchers have not uncovered the mechanism to block or reverse the condition once it is activated.

THE REAL NUTRITIONAL STATUS OF THE GFD

Popular media beliefs attribute weight loss, improved athletic ability and increased overall health amongst many other health claims to a gluten-free diet. While the pillars of a GFD are indeed fruits, vegetable, protein and dairy products, it is in the carbohydrate selections that the diet often falls short of its potential.

The traditional GFD has been reported in several studies to be less nutritious that the current media beliefs.1,2,3 In the study by Dickey,3 it was found that long-term GFD adherence was associated with an average weight gain in over 80% of diet adherent patients.

In the study by Hallert,2 in addition to the weight gain, 37% of the participants also showed signs of malnutrition with elevated homocysteine levels despite endoscopic results indicating a healed small intestine. A subsequent study,4

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revisited the nutritional deficiencies of long-term GFD adherent coeliac patients and found similar results to Hallert and colleagues.2 In comparing the intake of the participants on a GFD to the general population controls, Hallert2 found that the number of bread servings was the same in both groups, however, the nutritional content of the gluten-free bread was inferior to its wheat-based counterpart.

In another study of usual intake patterns, Thompson and colleagues1 reviewed the food records of 34 participants, which revealed deficiencies in B vitamins, fibre, calcium and iron in the standard GFD. In the study,1 females did not meet any of the recommended dietary standards and males only met the recommendation for iron. In a subsequent study by Lee and colleagues,5 the impact of adding the ancient grains to the standard gluten-free dietary pattern was measured. The results were a statistically significant change in the nutrient profile. The nutrient profile was transformed from not meeting the dietary recommendations, as Thompson and Hallert had found, to meeting the recommendations for both men and women. The addition of only two servings of alternative grains (1/2 cup each oats and quinoa) and a serving of high fibre gluten-free bread and a biscuit changed the nutrient content two fold.

Figure 1: Nutrient comparison of standard vs alternate diet

Of great concern, as revealed in the studies

by Lee5 and Thompson1, the typical intake of participants with coeliac disease relied heavily on prepared foods, quick and convenience products.

Gluten-free doughnuts and white rice were often the most frequently consumed carbohydrates.

Gluten-free alternative grains, wholegrain based products and enriched products were seldom included in the typical intakes of the study participants. At the time of the studies, few enriched or wholegrain prepared products were readily available in the market place; however, alternative grains have been readily available for many years.

BRIGHTER FUTURE FOR GLUTEN-FREE PRODUCTS

Thankfully, manufacturers are responding to the research and changing the nutrient profile of many of the gluten-free products. Glutenfree breads can now be found containing wholemeal brown rice instead of starches and ancient grains such as millet, buckwheat, and quinoa. Some products are now even enriched with vitamins and minerals. Pastas can now be found to be made of quinoa, black bean and red

lentil, providing excellent sources of protein, B vitamins and fibre. However, availability of nutrient rich products alone does not guarantee a nutritionally balanced intake.

Careful review of clients’ usual dietary pattern is needed to identify deficiencies and encourage inclusion of higher nutrient dense gluten-free products and foods. Current practice guidelines by National Institute of Clinical Excellence (NICE),6 the British Society of Gastroenterology,7 as well as the European Society of Paediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN)8 and the Academy of Nutrition and Dietetics (AND),9 encourage the inclusion of gluten-free wholegrains, ancient grains and oats in the gluten-free diet to bridge the nutrient gap.

Adding the alternative grains into the glutenfree diet may not provide just a nutritional answer, but may also be an economic solution for many patients as well. Typically, the alternative grains are less expensive than many gluten-free products. In the study in the UK by Burden and colleagues,10 it was found that regular and quality supermarkets carried the greatest range of gluten-free products. However, they were www.NHDmag.com May 2016 - Issue 114

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CONDITIONS & disorders Table 1: Nutritional breakdown of gluten-free grains Nutrient Per 100gms

White rice

Brown rice

Quinoa

Buckwheat

Millet

Oats

DV 2000 calorie diet

Calories

97

112

120

92

119

371

2000

Protein g

2.02

2.32

4.4

3.38

3.51

13.7

Fat g

0.19

0.83

1.92

0.62

1.0

6.87

65

Fibre g

1.0

1.8

2.8

2.7

1.3

9.4

25

Thiamin mg

0.02

0.102

0.107

0.04

0.106

0.54

1.5

Riboflavin mg

0.013

0.012

0.110

0.039

0.082

0.123

1.7

Niacin mg

0.29

1.33

0.412

0.94

1.33

0.823

20

Iron mg

0.14

0.53

1.49

70.9

0.63

49.5

18

2

10

17

7

3

47

1000

Calcium mg

typically four times more expensive than their wheat-based counterparts. It was also noted that budget stores did not carry any gluten-free products. Similar findings were reported from the United States by Lee and colleagues11 and in Canada.12 In the Canadian study,8 glutenfree products were on average 242% more expensive.

Issues of availability were found in the US11 similar to the findings for the UK. In Lee’s study11 only 36% of the gluten-free items were carried in regular supermarkets, whilst 100% of the products were available online. Lee also found that the online products were the most expensive in comparison.11 In the United States where gluten-free products are not on prescription, breads were found to be 153% more expensive, whilst biscuits and cakes were 278% more expensive. Using the alternative grains would provide a nutritious cost effective alternative.

The second concern revolves around the potential for cross contact with gluten. While the potential for contact of gluten in oats has been researched over the year, little attention has been given to the same risk in other grains. The study

by Thompson and colleagues13 revealed the reality of the concerns of gluten exposure of these ancient grains. In the study it was found that some grains not labelled gluten-free contained as much as 300ppm gluten, almost 60 times the acceptable level.13 The authors concluded that only certified gluten-free grains should be 46

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included in the GFD. Thompson has continued to test and report on the gluten content of grains and processed gluten-free products on the site www.glutenfreewatchdog.com.

CONCLUSION AND PRACTICE POINTS

Adding alternative grains to the gluten-free diet not only provides a nutritional advantage for your patients, but potentially is a cost effective one as well. These grains may be new and unfamiliar to your patients. Providing a weekly menu, cooking instructions, traditional recipes familiar to your clients, with the addition of the grains, may improve acceptance. However, care must be taken to add the grains slowly and ensure that the grains be labelled gluten-free to avoid any risk of cross contact with gluten.

While the addition of these powerhouse grains appears to be an ideal solution, in practice some caution must be advised. As the ancient grains offer good sources of fibre, a large amount of grains (and thus fibre) suddenly added to the typical GFD could cause some gastrointestinal distress mimicking gluten exposure. It is generally recommended to add the ancient grains slowly and over time, starting with a quarter to a half portion per day, then slowly increasing over time. In addition to the slow introduction of these grains, to monitor for tolerance and allow the gastrointestinal system to adjust, care must be given to recommend adequate intake of fluids.

FOOD & DRINK

Suzanne Ford, Dietitian in Metabolic Diseases

Pat Portnoi, Dietitian in Metabolic Diseases

Dr Anita MacDonald, Consultant Dietitian in IMD Suzanne Ford works as a Metabolic Dietitian for Adults at North Bristol NHS Trust.

She has been a Dietitian for 21 years, with six of them working in Metabolic Disease.

Pat Portnoi has been Dietitian for the Galactosaemia Support Group UK for 18 years and has worked in Metabolic Disease for over 35 years.

Professor Anita MacDonald is Consultant Dietitian at Birmingham Children’s Hospital and has almost 40 years’ experience in Paediatric and IMD dietetics.

GALACTOSAEMIA: SUITABLE CHEESE FOR PEOPLE ON A LOW GALACTOSE DIET Galactosaemia is an inherited metabolic disorder of carbohydrate metabolism which affects one in 44,000 people in the UK population, although it is more common in the Irish and Irish traveller populations. It is one of the more common metabolic disorders managed by dietitians.

Ideally, all patients should be under a specialist inherited metabolic care team, but some patients are treated in both Paediatric and Adult general district hospitals.

Classical galactosaemia is due to the deficiency of galactose-1-phosphate uridyl transferase (GALT). Early diagnosis and treatment is vital in order to prevent liver disease and sepsis, although longterm complications of the disease do occur. In the UK, there is no screening for galactosaemia so infants are diagnosed clinically and this usually happens in the first few days of life following the development of symptoms.

Much is still unknown about this condition and its long-term outcomes.

Some early treated patients develop learning difficulties. These are often mild, but can occasionally be more serious with other neurological impairments. Reduced bone density and ovarian dysfunction in females are commonly observed in older patients.

Cataracts occur in untreated patients or patient non adherent to diet therapy.

Management

A galactose restricted diet is the only treatment for galactosaemia. The main source of galactose is from the lactose in milk, so the diet is primarily a lactosefree, galactose restricted diet. Fruit and vegetables provide a very small

amount of galactose and contribute very little to overall galactose intake, so it is not recommended that they are restricted in a diet for galactosaemia.

New international guidelines on all aspects of management should be available in 2016.

Although milk-containing products are not allowed in galactosaemia, recent research has shown that certain types of mature hard cheese are low in galactose and lactose and so are suitable in this diet.

Why should cheese be allowed in galactosaemia?

It is important that people with galactosaemia include permitted cheeses in their diet, not only for dietary freedom and enjoyment of the product, but as a source of calcium. Calcium intakes of people with galactosaemia are commonly sub-optimal despite the use of fortified products, and low intake may contribute to poor bone density.

Between 2000 and 2015, the Galactosaemia Support Group has sponsored the analysis of 181 samples of cheese for lactose or for lactose and galactose, using 12 different analyses, and now has considerable knowledge about which cheese can be allowed.

Many countries now allow specific mature cheese, although these may vary from country to country. www.NHDmag.com May 2016 - Issue 114

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FOOD & DRINK How is cheese made?

Pasteurised milk has specific starter culture bacteria added to it, so fermentation starts; then rennet is added to the ferment which causes a separation of curds from whey. The whey is a liquid which drains off and this component of the fermented milk is the part highest in lactose.

Consequently, when the whey is removed, much lactose is removed with it.

When Cheddar cheese is made, further manipulation of the curds is done by salting and then ‘cheddaring’ the curds (this means cutting it into cubes and turning it constantly to dry out the cheese and encourage further whey to drain off). Traditionally, Cheddar cheese is formed into truckles (cylinders) for maturing (preferably in a cave near the Cheddar gorge).

Other cheeses such as Emmental, Gruyere and Parmesan are washed in a salt bath and this may encourage further drying out and loss of lactose.

How is lactose (and therefore galactose) lost in cheese making?

Lactose is lost in two ways: 1) Lactose is metabolised by the bacteria. Some cheese have very specific bacteria added, such as propionicbacter shermani in emmental cheese, which along with other strains of bacteria, make the holes. Emmental cheese is particularly

suitable in galactosaemia as the lactose is thought to be completely used by the bacteria.

2) Lactose is leached away from the cheese as it dries and matures, as the whey component runs off. Generally an older, more mature cheese will have less lactose as it has dried out. A soft cheese will have more moisture in it, and so more whey, and therefore will not be suitable.

What are the permitted lactose and galactose levels?

Based on many years’ experience of cheese analysis in the UK, the Galactosaemia Support Group MAP allows the use of specific cheese in galactosaemia that consistently show levels of <10mg/100g of galactose and lactose. Cheese should be analysed five times or more to allow for individual variation.

What cheeses have been analysed?

Many different cheese have been analysed and Table 1 lists suitable and unsuitable cheese.

Various milk-free cheese substitutes made predominantly for the vegan/allergy market can also be used and are free of galactose. The eating, cooking and nutritional qualities of a cheese substitute is different to a standard cheese, but they can add extra variety in the diet.

Table 1: Cheese allowed in a low galactose diet CHEESE

DESCRIPTION

Emmental cheese Grated, sliced, block

Hard Swiss cheese with holes

Gruyere cheese Block

Hard Swiss cheese

Comte Block

Hard French mountain cheese

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PRODUCT

Table 1: Cheese allowed in a low galactose diet (continued)

Jarlsberg Cheese Block

Hard Norwegian cheese with holes

Italian Parmesan cheese Grana Padano, block or grated

Hard Italian cheese

Emmi Fondue Mix

Swiss cheese fondue mix

Specific Cheddar Cheese(UK) Lye Cross extra mature and mature Valley Spire Parkham Tesco Country Farmhouse extra mature Sainsbury`s TTD West country extra mature Dromona vintage cheddar (N Ireland) Rathdaragh vintage cheddar (N Ireland)

Mainly extra mature or vintage cheddar block, traditionally made and packed

Vegetarian/vegan cheese alternatives

Bute Island

Sheese - Various soy cheese-hard, cream, slices

Cheezly

Various soy cheese - hard, cream, slices

Free and Easy

Cheese flavour sauce mix

Mozzarisella

Creamy Risella.- Mozarella rice based cream

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FOOD & DRINK Table 1: Cheese allowed in a low galactose diet (continued) CHEESE

DESCRIPTION

Vegetarian/vegan cheese alternatives (continued)

No Muh

Cheese squares, melty cheese, herb cheese and cheese with walnuts.

Parmazano

Grated replacement Parmesan.

Pure

Thick Cheese Slices Pure Soft and Creamy Spread

Tofutti

Various soy cheese - hard, cream, slices

Vegourmet

Montanaro smoked vegan cheese slices Jeezini Celtic Cheddar style vegan cheese block Jeezy natural vegan cream cheese Bianco vegan cheese - similar to mozzarella

Violife

Creamy Original - cream cheese type Cheddar cheese type block Parmesan

Follow your Heart

Various cheese slices- mozzarella, herb, American cream cheese

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PRODUCT

Why is some cheddar allowed but not others?

Suitable Cheddar is made using traditional methods, the right bacteria and has been matured for a long period. Traditional manufacture allows the cheese to dry naturally. Large scale factory processes pack the cheese in plastic at an earlier stage and then lactose cannot be lost.

Suitable cheese will often be labelled as extra mature or vintage Cheddar cheese and may be 12 months or 15 months old or more. Seven Cheddars are currently allowed. Lye Cross Farm cheese is still suitable, but is no longer available at Aldi.

Table 2: What is not allowed? All other cheese and cheese in manufactured foods BabyBel - Original and Emmental Cheddar cheeses - all except for the seven listed as permitted Cheshire Cottage Cheese Dairylea Cheese Spread Edam Gouda Lacto-free cheese Processed cheese Soft cheese

Why the PDO seal is no longer a guide to suitability

The seal is a geographical seal, which means that the product is made in a certain area of the country. In the past, this seal was used by the GSG society to help identify suitable low lactose Cheddar cheese made in one area in Britain. However, this has caused confusion as this seal is also used for other cheese that contains lactose, e.g. Stilton has the seal as it is made near Stilton in Leicestershire, but it contains lactose. We no longer recommend using this seal to identify if a product is low in lactose and galactose.

Stilton, Wensleydale American Parmesan Manchego cheese - recently analysed Lacto-free cheese - is it suitable?

In any type of ‘lacto-free’ cheese, about half of the lactose is removed by filtration and the other half is enzyme treated to break down the lactose into galactose and glucose. These products contain galactose and are unsuitable for galactosaemia.

For further patient information please visit the Galactosaemia Support Group (GSG) Website: www.galactosaemia.org/.

The work on cheese would not have been possible without the support of the GSG and we are grateful for all their support.

Information sources 1 Berry G and Walter J: Chapter Disorders of Galactose Metabolism in Inborn Metabolic Diseases pub Springer Medizin Germany (2012) ISBN: 978-3642-43420 2 Jumbo-Lucioni PP et al. Diversity of approaches to classic galactosaemia around the world: a comparison of diagnosis, intervention and outcomes; J Inherit Metab (2012) 1037-1049 3 Bosch A; Classic galactosaemia: dietary dilemmas; J Inherit Metab Dis (2011) 34:257-260 4 S Adam et al. How strict is galactose restriction in adults with galactosaemia? International practice; Mol. Genet.Metab. 115 (1) (2015), 23-26 5 Portnoi P and A MacDonald. Determination of the lactose and galactose content of cheese for use in the galactosaemia diet (2009) JHN Diet 22.2009 p 400-408 6 Van Calcar et al. A re-evaluation of life-long severe galactose restriction for the nutrition management of classic galactosaemia; Mol. Genet.Metab. 112 (2014) 191-197 7 Rutherford PJ, Davidson DC and Matthai SM. Dietary calcium in galactosaemia (2002). J Hum Nutr Dietet, 15, p 39-42 8 Portnoi P, MacDonald A. Chapter: Lactose and galactose content of cheese. Handbook of cheese in health: production, nutrition and medical sciences; Wageningen Academic Publishers. 10/2013: pages 496-513; ISBN: 978-90-8686-211-5 9 Portnoi PA, MacDonald A. The lactose content of Mini Babybel and suitability for galactosaemia. J Hum Nutr Diet. (2011) Dec; 24: 620-1 10 Portnoi PA, MacDonald A. The lactose and galactose content of cheese suitable for galactosaemia: new analysis (2105)JIMD Reports 11 Metabolic pathway from ‘Galactosaemia - What’s that?’ leaflet (2015), printed by the Galactosaemia Support Group

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book review

Death by Carbs Review by Ursula Arens Writer; Nutrition & Dietetics Ursula has spent most of her career in industry as a company nutritionist for a food retailer and a pharmaceutical company.

She was also a nutrition scientist at the British Nutrition Foundation for seven years.

Ursula guides the NHD features agenda as well as contributing features and reviews

author: Paige Nick publisher: Bookstorm April 2016 ISBN: 978-0620674355 Price: Paperback £11.21

Tim Noakes is a not-shy professor of exercise physiology from Cape Town in South Africa and has lots to say on diet. More on this later.

However, it is amazing that he has just become the main murder victim in a crime fiction book, despite being very much alive. It is some tribute to him that there are enough South African readers of the completely made-up plot of his murder, to put the book into the Top 10 sales list for March 2016. The book Death by Carbs bizarrely describes the fictionalised characters involved and affected by the unreal death of a real nutritionist.

The story starts with the discovery of the body. The overweight policeman hands the corpse to the ambulance men, but they are car-jacked, and two gangsters have to handle the disposal of the valuable dead person. So who killed Professor Noakes?

We have four signed copies of Death by Carbs by Paige Nick to give away. For your chance to win, click here . . .

There is a spaghetti plate of weaves and clues on who-dunnit. Was it the ex-publisher who had rejected the low carb cookbook that launched the ‘banting’ craze in South Africa? Was it Tim Noakes’ wife, who seems to have disappeared? Was it the CEO of a snack company that was facing decline because of public carb-rejection? Was it the jealous co-author of the cookbook, a secret-pasta-eating chef, who was facing poor attendance and financial ruin at his low carb restaurant? Or was it any of thousands of crazy trolling TN fans; there is particular suspicion of a woman 52

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who is quick to push meal plans on the internet, which she claims to have been TN endorsed.

Actually, this is a who-cares whodunnit novel and the revelation of the culprit and surprise final twist is the least interesting part of the book. Of greater interest are the personalities and plots around diet promotion, which Death by Carbs offers very interesting insights into.

Many of the fictional characters in the book make their money from the diet industry, and it is revealing that there is not even the slightest hint of dietetic input into the (fictional) discussions. But there are rich descriptions of Facebook and other social media discussions of weight loss. The creation of multiple online personas to promote diets and the planting of half-truths and muddle to push products, was very insightful, illustrating the way that bubbles of opinion can develop without any science anchor.

The author, Paige Nick, has researched the weight loss discussions that occur online in depth and reflects these back in her fictional writings including by one character called Nicky

. . . the involvement of professional conduct hearings broadens the issues into those of professional free speech. And what better way to handle such delicate topics, than in a book of fiction.

Paige, which is a clever joke. The book even has a cover endorsement by Professor Tim Noakes: “I was breathless right until the end,” which is a comment best appreciated once you have read the book.

The real Tim Noakes

So, who is Tim Noakes and why is he such a rich source of fictional delight? He is a doctor (with three doctorates) and has spent his career researching metabolic homeostasis mechanisms during extreme exercise, or activities in extreme conditions, such as super-cold environments. He wrote a very successful, thousand-page book for runners entitled Lore of Running, but from that point, he has made very sharp U-turns in his opinions, which are now almost opposite to those of most of his colleagues. He thinks that athletes (and everyone) should have diets based on protein and fats, and that intakes of all carbohydrates should be tightly controlled.

In recognition that William Banting (died 1878) was the original advocate of this style of eating, Tim Noakes labels the dietary rules he promotes as ‘banting’.

His book entitled Waterlogged - the Serious Problem of Overhydration in Endurance Sport described his research into exercise-associated hyponatraemia and strongly challenged the promotions of the sports drinks industry. His next book was a popular diet book describing recipes for Low Carb High Fat (LCHF) eating, entitled Real Meal Revolution. The book has been a crazy success in South Africa with sales at 250 thousand, and was followed by a book launched in 2015 describing LCHF eating for children: Raising Superheroes.

The battle between high fat or high carb strategies to optimize sports performance (in exercisers) or health (in overweight public) are

not unique to academics in South Africa, but nowhere else has this debate spilled over into popular fictional literature, or popular judicial reporting.

The prompt for Prof Noakes’ most recent confrontations is due to a twitter spat. A breastfeeding woman tweeted him on whether the LCHF diet was suitable for her and he replied that it was, and to, “wean baby onto LCHF”. This was a final straw for Claire JulsingStrydom, the President of the Association for Dietetics in South Africa, who reported him to the Health Professions Council of South Africa on the basis of unprofessional conduct. The legal case balances the full body of nutrition science research against a tiny tweet and while hearings took place in February 2016, final sessions are due in October 2016. No doubt lawyers of both sides are spending much highly charged-for time, reviewing nutrition science journals.

This feature is about a fictional book, rather than any review of nutrition science debates prompted by Professor Tim Noakes. Perhaps the observations that the (mostly black) runners fuelled on fried chicken often won races over the (mostly white) runners fuelling on glucose drinks, started Tim Noakes’ contrarian views.

However, the involvement of professional conduct hearings broadens the issues into those of professional free speech. And what better way to handle such delicate topics, than in a book of fiction.

Death by Carbs is a quick-flick book that cannot really be recommended to any book club.

However, it is an interesting and fun tackle of crazy diet-talking characters, and reveals many of the peripheral forces that have so much sway on public opinion around weight loss. For this reason (only), it is an interesting read for dietitians. www.NHDmag.com May 2016 - Issue 114

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CONDITIONS & DISORDERS

Nicola Crawford Taylor - Coeliac UK Membership Helpline Dietitian

A Coeliac UK Membership Helpline Dietitian My working week starts on a Wednesday and always with breakfast, usually porridge or a bowl of yoghurt and homemade granola and the essential cup of tea. I then drop my two young children at nursery before heading to work for the day.

I work part-time, three days a week, so the first part of my day is spent catching up with colleagues and checking and responding to emails to ensure that I’m fully up to date with current events and procedures.

Today, my first task is to check final proofs of two articles for our summer issue of Crossed Grain magazine, which is sent out to all Members three times a year. The articles cover travel insurance, soya lecithin and the new Government guidelines on alcohol, as well as a number of recipes all with a Mediterranean flavour.

A large proportion of my day is spent answering enquiries via the Coeliac UK Helpline, Coeliac Awareness email or social media.

Week 2016 Enquiries are varied and no two days are 9th-15th May the same. Today on the Helpline, I have been asked about the link between coeliac disease and Type 1 diabetes; how much gluten needs to be eaten prior to testing for coeliac disease; if maize starch is gluten-free; can rye bread be eaten; what foods are available on prescription and whether fatigue is a symptom of coeliac disease. Not having face-to-face contact with people means having to build a rapport over the telephone fairly quickly to ensure that they feel comfortable talking about issues and symptoms that are sometimes quite personal. Active listening is a skill that I have really 54

A day in the life of . . .

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developed during my time here and it is something that the Helpline team are committed to, it is only through actively listening to someone that we are best able to support them.

11:30-12:30 and it is time for our bi-monthly social media chat. This is an hour-long chat held every other month where the dietitians take over the handling of Coeliac UK’s social media channels and give people the opportunity to contact us directly. It is a busy hour, with lots of enquiries about a variety of topics, including iron deficiency anaemia and good sources of iron that are suitable for a glutenfree diet, ongoing symptoms despite following a gluten-free diet for almost a year and gluten-free options when travelling to South-East Asia. I love the fast-paced nature of this and it is an area in which we hope to develop our services in the future.

This morning, I have also handled a number of email enquiries regarding diagnosis, the conditions that are associated with coeliac disease, liver function tests, if there is a link between coeliac disease and tooth enamel defects and a low residue diet.

13.30 and it’s time for lunch, a puy lentil and feta salad, followed by a quick walk around the block to get some fresh air before I begin the second part of my day. First up is our team meeting. The Helpline team consists of seven staff, two dietitians, three food and drink advisors and two membership advisors, and between us we handle an average

Coeliac UK is the oldest and largest coeliac disease charity in the world and we have been working for people with coeliac disease and dermatitis herpetiformis since 1968. of 2,500 enquiries a month. Operating Monday to Friday from 9am to 5pm, the Helpline is one of the key services offered by Coeliac UK and provides support to a wide range of individuals, including people who are newly diagnosed with coeliac disease, those seeking a diagnosis, healthcare professionals and established Members who have been diagnosed for many years. It is often the first point of contact that people have with the Charity and gives callers invaluable advice on gluten-free living from recipe ideas to information on labelling. We meet on a regular basis, away from the phones, to ensure that we have dedicated time to discuss any issues and catch up on any organisational news and events. Today’s meeting is focused on identifying a better way in which we can monitor and record the enquiries we receive via the Helpline to enable us to improve the services and resources we offer.

The remainder of the afternoon, interspersed with answering Helpline enquiries, is spent updating the information on the website about following a gluten-free diet when you are on a budget. With over a quarter of Clinical Commissioning Groups in England now restricting, or withdrawing, access to gluten-free staple foods for people with coeliac disease, the aim is to provide more support for those who are struggling to follow a gluten-free diet now that their prescriptions have been withdrawn, and to provide some useful tips for those who may be on a tight budget.

As you can see, the day is varied, which I love. I never know what the next enquiry will be, so whilst I specialise in coeliac disease and the gluten-free diet, continuing professional development is so important too. I really enjoy speaking to a range of people, whatever stage of their journey, knowing that the help and support we provide can really make a difference.

Did you know? Coeliac UK offers free Membership to all HCPs. Benefits include a copy of our Food and Drink Directory which lists over 18,000 foods that are suitable for a gluten-free diet (a useful tool to show patients when you see them in clinic); access to the latest research findings into coeliac disease and the glutenfree diet; our quarterly professional email newsletter and an online forum where you can share best practice and information with other HCP Members. If you are not yet a Member, visit our website www.coeliac.org.uk/join-us/ hcp/ or contact the Helpline on 0333 332 2033 to join today.

Coeliac UK is the oldest and largest coeliac disease charity in the world and we have been working for people with coeliac disease and dermatitis herpetiformis since 1968. We have offices in England, Scotland and Wales. Together, as the biggest UK community for coeliac disease, we will improve healthcare and make a glutenfree choice an easy choice.

Don’t forget: Awareness Week 2016 - Is it coeliac disease? From 9th to 15th May.

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CLINICAL

web watch Essential information and useful updates.

Visit www.NHDmag.com for full listings.

NHS CHOICES

Eatwell Guide update

The NHS Choices pages have a great range of healthy eating and lifestyle advice for patients. In light of the recent Eatwell Guide update, this section has been renewed and offers an excellent overview of the guide and how it fits in with daily eating. Patients can also find useful links to the Change for Life Sugar Swaps app, the One You - ‘How are you?’ health questionnaire, as well as other resources for 5-a-day, BMI calculation and calorie information.

For full article NICE STANDARDS ON references please email CARE ANTENATAL info@ Antenatal care - NICE quality networkhealth group.co.uk standard [QS22]. Initially

published in September 2012, the source recommendations and definitions for statement 6 (risk assessment - gestational diabetes) in this quality statement were updated in April 2016 to reflect changes to the NICE guideline on antenatal care which was published in March 2016.

For more information click here: www.nice.org.uk/guidance/qs22 GLUTEN-FREE DIET AND IBS NEW EVIDENCE TO SUPPORT EFFICACY Efficacy of a gluten-free diet in subjects with IBS-D unaware of their HLA-DQ2/8 genotype.

Aziz, A, Trott N, Briggs R et al (2006). Clin Gastroenterol Hepatol.

Around a third of all IBS patients

56

Full details here: www.nhs.uk/ Livewell/goodfood/Pages/theeatwell-guide.aspx

Top diets review for 2016

The key to weight loss and a healthy BMI is good old-fashioned healthy eating and exercise, right?

Maybe not?! There is a plethora of diets out there, which promise weight loss results, but what do patients really know about them?

NHS Choices, in conjunction with the BDA (British Dietetic are categorised as IBS-D (Irritable bowel syndrome with diarrhoea) and it is the most common subtype of IBS found in clinical practice. Up to 84% of patients with IBS report a link between food and their gastrointestinal symptoms. One in four patients report gluten containing products are a trigger. Following these observations, ‘non-coeliac gluten sensitivity’ (NCGS) has become an increasingly common label for these patients and their clinical condition. There is controversy surrounding NCGS, which is due to other non-gluten components such as FODMAPs, which may play a role in triggering IBS symptoms. This prospective study evaluated the clinical response to a gluten-free diet (GFD) in a cohort of patients with IBS-D who were blinded to their HLA-DQ status. The long-term benefits and sustainability of a gluten-free diet

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Association), has developed this excellent overview of the following diets, looking at the pros and cons and giving a final verdict on their efficacy and safety: 5:2 diet, Dukan diet, Paleo diet, New Atkins diet, Alkaline diet, Cambridge diet, South Beach diet, Slimming World diet, Slim-Fast diet, LighterLife diet, WeightWatchers diet and Rosemary Conley diet. For full information click here: www.nhs.uk/Livewell/ loseweight/Pages/top-10-mostpopular-diets-review.aspx were also assessed. For the full report click here: www.drschaerinstitute.com/uk/news/latestresearch/1163-1367.html NEW PUBLIC HEALTH ENGLAND DATA - SALT CONSUMPTION Published on 22nd March 2016, the National Diet and Nutrition Survey (NDNS) showed that on average adult consumption of salt is now around 8.0 grams per day. Between 2005 to 2014, adults have cut their average salt consumption by 0.9 grams per day according to this data. Average salt consumption for adults in 2014 was 8.0 grams per day.

This has decreased from 8.5 grams in 2011 and 8.8 grams in 2005/06.

Overall, salt intake has fallen by 11% since the 2005 to 2006 survey. More information here: www.gov.uk/ government/news/new-phe-dataon-salt-consumption-levels

dates for your diary

events and courses University of Nottingham School of Biosciences

Matthew’s Friends KetoCollege

• Public Health Nutrition Policy (D24PHP) 24th & 25th November & 26th January 2017

• KetoCollege 9th & 10th June 2016 The Felbridge Hotel, East Grinstead RH19 2BH

Modules for Dietitians and other Healthcare Professionals • Obesity Management (D24BD3) 6th & 7th October & 8th & 9th December

New to Ketogenic therapy? Or needing a refresher course and an opportunity to network with other Ketogenic teams?

• Understanding Behaviour Change (D24UCB) 9th & 10th February & 23rd March 2017

This course offers both scientific background and practical training in all aspects of implementation of the different Ketogenic therapies. Led by recognised Ketogenic diet experts. For the full programme and booking details please email ketocollege@mfclinics.com or visit www.mfclinics.com

For further details, please contact Lisa Fox via e-mail on lisa.fox@nottingham.ac.uk or check out the University website at www.nottingham. ac.uk/biosciences> and click on ‘Study with us’ and then ‘short courses’ which will take you to ‘for practising dietitians’.

Coeliac Awareness Week 9th-15th May For more information visit: www.coeliac.org.uk/get-involved/ Nutrition Support - Translating the Evidence into Best Practice 11th May Royal College of General Practitioners, 30 Euston Square, London, NW1 2FB www.nutriciaevents.org.uk

Nutrition Support - Translating the Evidence into Best Practice 17th May Manchester Museum of Science & Industry, Liverpool Rd, Manchester M3 4FP www.nutriciaevents.org.uk Nutrition and Cancer: What Patients want to know 18th May www.royalmarsden.nhs.uk/nutritionalcare

dieteticJOBS.co.uk The UK’s largest dietetic jobsite since 2009 • Quarter page to full page • Premier & Universal placement job listings • NHD website, NH-eNews and NHD Magazine placements

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The final helping Neil Donnelly

Neil is a Fellow of the BDA and retired Dietetic Services Manager.

His main areas of interest are weight management and eating disorders.

I have always been interested in numbers. With numbers you know what you get… or you should!

At school, I enjoyed my maths lessons and learning about percentages, fractions and decimals and how they fitted into everyday life. My Dad was a wages manager for a commercial organisation and on occasion, when I was younger, I used to accompany him to the bank, with his ‘commissionaire’, pick up the money for the weekly wages and then go back to his office where he would attend to the wage packets. How times have changed!

At secondary school, we also had a maths teacher, a Mr Pike, who, as well as living up to his name, was also on a mission… to make sure that everyone in our class passed O-level Mathematics the year before we needed to try the exam. Everyone did.

With the advent of calculators, this ability to work out for yourself what are essentially simple mathematical calculations seems to have disappeared and the understanding of numerical information seems to have been diluted somewhat, not least in when it comes to energy requirements and expenditure.

I refer of course to the knowledge, or lack of it, as to how many calories (a number) that the average person needs in order to maintain a healthy weight. This is weight management in its simplest form, whereby it is recommended that men on average consume 2,500Kcal per day and women 2,000Kcal.

Variations of course may apply. The more active an individual is, the more energy they expend and the more calories

they can eat to maintain a healthy weight, or maybe lose some excess weight.

“Simples,” says chief meerkat Aleksandr Orlov. So, now cometh the message. Because maths skills are so poor, the Chief Executive of the Royal Society for Public Health has concluded that current food labelling may even be ‘fuelling obesity’ and that we need to address the problem by combining symbols and numerical information (activity equivalent calorie labelling) in a bid to educate the public on how they could use up the calories that they would consume should they choose to eat their selected item, by walking/running. For me, this is a challenge that should go back to where I started… at school. What a great way to educate our kids in both maths skills and a healthy active lifestyle.

Who will stand up and be the Martin Lewis (Money Saving Expert) of childhood obesity and highlight the benefits of activity equivalent calorie labelling with the added health and wellbeing benefits? Who will introduce an innovative “Simples” approach to get our kids moving? Who is the Mr Pike of today who can make numbers meaningful and fun?

We can all be that 1%; that one in a hundred; that 0.01 individual and what a difference that could make! Count me in.

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