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

NHDmag.com May 2018: Issue 134



FOCUS ON PKU pages 49-58


WELCOME Emma Coates Editor Emma has been a registered dietitian for 12 years, with experience of adult and paediatric dietetics.

If you have important news or research updates to share with NHD, or would like to send a letter to the Editor, please email us at info@network healthgroup.co.uk We would love to hear from you.

In nutrition and dietetics, we love to use a lot of ‘F’ words. No, I’m not talking about profanity, but fabulous words such as, fat, fibre, food, feeding, FODMAP, freelance and frolicking. Ok, perhaps that last one isn’t going to make it on to the technical terms list! Either way, in this May digital-only issue of NHD, we bring you a flock of articles to help you through the month. Hay fever will plague many people as the summer approaches, but have you heard about Pollen Food Syndrome (PFS)? Allergy UK Dietitian, Kate Roberts shares an article on PFS as an adult food allergy for this month’s Cover Story. PFS is increasing in the UK and Kate discusses the symptoms and management. In the first of our paediatric articles in this issue, Maeve Hanan gives us an overview of complementary feeding, discussing the current UK guidelines and the evidence to support how and when to introduce complementary foods. To further the conversation, Jacqui Lowdon focuses on the development of food preference and some of the challenges of infant feeding, such as food neophobia. We welcome back Rebecca Gasche, with her non-coeliac gluten sensitivity feature, which takes us through its symptoms and how it differs from other wheat-related conditions. Emma Berry also returns with an overview of wholegrains in the UK, discussing their benefits and ways to increase consumption. Focusing on nutrition management, ‘Let them eat fat!’ writes Sue Wood, Specialist Dietitian with Matthew’s Friends. Sue guides us through the ketogenic diet giving us three very different adult cases. Malnutrition has been a hot topic over recent months with the publications such as the APPG

report focusing on Hidden Hunger and Malnutrition in the Elderly and the BSNA’s Forgotten not Fixed: A Blueprint to Tackle the Increasing Burden of Malnutrition in England. This month, Anne Holdoway, in her role as Chair of the Managing Adult Malnutrition in the Community panel, brings an overview of the updated resources and materials from the panel. We introduce Aliya Porter too, with her summary of discussions held at this year’s Association for Nutrition Regional Network (North West region) conference, which focused on nutrition in a growing ageing population. We’re pleased to bring you articles on PKU from leading UK metabolic dietitians and an expert parent perspective. Suzanne Ford shares her insights into The politics of PKU and how being on a specialist diet can lead to political activism; something the NSPKU have been instrumental in on behalf of the PKU community over the last 18 months. We also welcome Rachel Wilson and Charlotte Ellerton, both adult metabolic dietitians, who discuss advice and recommendations for the management of maternal PKU. From a parent’s perspective, we also welcome Sharon Buckley, parent of a child with PKU, who lends us a glimpse in to family life with this condition. Enjoy the read in this merry month of May. Emma www.NHDmag.com May 2018 - Issue 134



12 COVER STORY Pollen Food Syndrome



37 Adult malnutrition Management within the community


Face to face

39 Elderly nutrition Needs of a growing, ageing population

Latest industry and product updates

Ursula meets Long Li

16 NON-COELIAC GLUTEN SENSITIVITY Signs and symptoms 19 Ketogenic diet therapy in adults A look into three adult case studies 26 Wholegrains An update on UK fibre intake


42 Freelance practice Working with the media 44 BDA update 'Work Ready' - a new BDA initiative 46 A day in the life of . . . a Rotational Band 6 Dietitian

49-58 FOCUS ON PKU Maternal PKU • politics • a parent's story 59 Events & courses Dates for your diary

When and how to start 33 Infant weaning The development of taste preferences

60 Dietitian's life #trustadietitian

Copyright 2018. All rights reserved. NH Publishing Ltd. 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


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

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Emma Coates Editor Emma has been a registered dietitian for 12 years, with experience of adult and paediatric dietetics.

NEW DYSPHAGIA GUIDELINES - DRIVE TO ADOPT AND IMPLEMENT IDDSI In August 2017, the BDA and the RCSLT surveyed members of their organisations to gain insights in to whether the adoption of the International Dysphagia Diet Standardisation Initiative (IDDSI) would be beneficial. Both surveys concluded that they would support the new framework. IDDSI is the international standardised terminology and definitions for texture modified foods and thickened liquids for people with dysphagia. The framework consists of a continuum of eight levels (0-7) and includes descriptors, testing methods and evidence for both liquid thickness and food texture levels. Since October 2017, both the BDA and RCSLT have been working to raise awareness of the new framework with a view to adoption and implementation between April 2018 and April 2019. The new framework promotes the use of IDDSI compliant products, foods and labels from April 2018, meaning manufacturers are currently revising their products to align with the framework. Training and guidance for healthcare professionals and carers will be required to ensure correct implementation of the new framework, with ongoing support to ensure competency continues. More information can be found at iddsi.org/ or www.bda.uk.com/professional/practice/international_dysphagia_diet_ standardisation_initiative_framework

NICE PUBLISHES UPDATED GUIDANCE FOR ADHD IN CHILDREN, YOUNG PEOPLE AND ADULTS It's thought that around 2-5% of school- raising awareness to bring about aged children may have ADHD.1 It can positive change and inclusion in mental be a challenging condition to manage health, education and employment. for many families, educational staff and The ADHD Foundation welcomes healthcare professionals. the NICE guideline published in The ADHD Foundation2 is a March: Attention deficit hyperactivity registered UK charity working ‘in disorder: diagnosis and management partnership with individuals, families, [NG87]. doctors, teachers and other agencies This guideline covers recognising, to improving emotional wellbeing, diagnosing and managing ADHD in educational attainment, behaviour children, young people and adults. and life chances through better The aim of the guidance is to improve understanding and self-management recognition and diagnosis, as well as the of ADHD, ASD and related learning quality of care and support for people difficulties such as dyslexia, dyspraxia, with ADHD. The guidance includes a Irlen’s Syndrome, dyscalculia and section on dietary advice (1.6 Dietary Tourette’s Syndrome’. They also provide advice), which is concise but helpful. The training for GPs, Teachers, Social Care full guideline can be found at www.nice. agencies and other professionals, org.uk/guidance/ng8 1 NHS Choices. 2018. Attention deficit hyperactivity disorder (ADHD). [online] Available at: www.nhs.uk/conditions/attentiondeficit-hyperactivity-disorder-adhd/. [Accessed 15 April 2018] 2 www.adhdfoundation.org.uk/

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NEWS HIGH OMEGA-6 LEVELS CAN PROTECT AGAINST PREMATURE DEATH A recent study1 published in The American When the researchers divided the study Journal of Clinical Nutrition asked the question, participants into five different groups based on ‘Could omega-6 fatty acids protect you against their blood linoleic acid level, they discovered premature death?’. The answer was ‘yes’. The that the risk of premature death was 43% lower in study, conducted by the University of Eastern the group with the highest level, when compared Finland, also found that while protecting to the group with the lowest level. A more against premature death, omega-6 fatty acids detailed analysis of the causes of death showed also help to reduce cardiovascular disease. that a similar association exists for death due to Professor Jyrki Virtanen from the University of cardiovascular diseases, as well as for death due to Eastern Finland, explains that, “Linoleic acid some other reason than cardiovascular diseases or is the most common polyunsaturated omega-6 cancer. However, no association was observed for fatty acid. We discovered that the higher the death due to cancer. Another significant finding blood linoleic acid level, the smaller the risk of of the study is that the outcome is very similar premature death.” regardless of whether the study participants The Kuopio Ischaemic Heart Disease Risk suffered from cardiovascular diseases, cancer or Factor Study, KIHD, determined the blood diabetes at the onset of the study. fatty acid levels of 2480 men between the ages The blood linoleic acid level is determined of 42 and 60 at the onset of the study, in 1984- by a person’s diet, and the main sources of 1989. During an average follow-up of 22 years, linoleic acid are vegetable oils, plant-based 1143 men died of disease-related causes and spreads, nuts and seeds. However, a person’s deaths due to an accident or other reasons were diet will affect his or her blood arachidonic acid excluded from the study. level only a little. 1 Virtanen, Jyrki K, et al, 2018. Serum n-6 polyunsaturated fatty acids and risk of death: the Kuopio Ischaemic Heart Disease Risk Factor Study. The American Journal of Clinical Nutrition, Volume 107, Issue 3, Pages 427

Fibre Figures (adult intake recommendation) LATEST NDNS SURVEY: FIBRE INTAKES (AOAC FIGURES) DRV report SACN report 1991 2015 In March this year, the latest dietary survey figures for the UK population were published (NDNS results NSP analysis 18g About 23g from Years 7-8 (combined) for the Rolling Programme method 2014/15-2015/16). For the first time, UK data on fibre AOAC analysis About 23g 30g intakes is presented as AOAC figures. method There is some scope for confusion, because there has been a ‘double change’ since the last reporting of fibre intakes in the UK diet. The first change is the method of analysis, which was previously done by the Englyst method, which capture Non-Starch Polysaccharide (NSP). The current fibre figures are those measured by American Association of Analytical Chemists (AOAC), and these additionally included resistant starch and lignin, so nearly always result in a higher figure. The second change is an increase in the actual fibre intake recommendations. The previous recommendation for fibre intakes set by the 1991 Dietary Reference Values report, was for an NSP intake of 18g/day for adults: this is about 23g g/day as an AOAC figure. However in 2015 the Scientific Advisory Committee on Nutrition (SACN) produced a report on carbohydrates in the diet, and recommended a further increase to intakes of 30g/day for adults. So the headline change in figures for adult fibre intake recommendations in the UK (18g to 30g), reflect the double change in fibre analysis methods and increased target recommendations. So, how much fibre are we consuming? For adults (those aged 19 to 64 years) average intakes were 19g/day. Although men were three times more likely than women to achieve the 30g/day recommendation (13% versus 4%), women had similar or greater intakes of fibre per 1000/kcals, so fibre-density in the diets of women is similar or better. The message of more fruit and vegetables and wholegrain breads and cereals in the diet remains unchanged. For more on fibre intake see p 26. www.NHDmag.com May 2018 - Issue 134



A new study1 in The British Journal of Nutrition has reported intermittent energy restriction diets, such as the 5:2 diet, clears fat from the blood quicker after eating meals than daily calorie restriction diets, reducing an important risk factor for cardiovascular disease. In the first study of its kind, researchers from the University of Surrey examined the impact of the 5:2 diet on the body’s ability to metabolise, as well as clear fat and glucose after a meal and compared it to the effects of weight-loss achieved by a more conventional daily calorie restriction diet. Previous studies in this field have predominantly focused on blood risk markers taken in the fasted state, which only tend to be, in for the minority of the time, overnight. During the study, overweight participants were assigned to either the 5:2 diet or a daily calorie restriction diet and were required to lose 5% of their weight. Those on the 5:2 diet ate normally for five days and for their two fasting days, consumed 600 calories, using LighterLife Fast Foodpacks, whilst those on the daily diet were advised to eat 600 calories less per day than their estimated requirements for weight maintenance (in the study women ate approximately 1400 calories, men ate approximately 1900 calories/day). Under the expert guidance of the team, those on the 5:2 diet achieved 5% weight-loss in 59 days compared to those on the daily calorie restriction diet who achieved their goal in 73 days. 27 participants completed the study, with approximately 20% of participants in both groups dropping out because they either could not tolerate the diet or were unable to attain their 5% weight-loss target. 8

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PRODUCT / INDUSTRY NEWS JUVELA GLUTEN-FREE STARTER PACK SERVICE To ease the transition onto a gluten-free diet, Juvela are delighted to offer your newly diagnosed coeliac patients a Juvela starter pack. Containing a range of staple gluten-free foods to try before setting up a gluten-free prescription, the pack will help your patients make the right food choices to suit their dietary preferences.

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To book your Company's product news for the next issue of NHD call 01342 824 073 Researchers found that participants who followed the 5:2 diet cleared the fat (triglyceride) from a meal given to them more efficiently than those who undertook the daily diet. Although there were no differences in post-meal glucose handling, researchers were surprised to find variations between the diets in c-peptide (a marker of insulin secretion from the pancreas) following the meal, the significance of which will need further investigation. The study also found a greater reduction in systolic blood pressure (the pressure in your blood vessels when your heart beats) in participants on the 5:2 diet. Systolic blood pressure was reduced by 9% of following the 5:2, compared to a small 2% increase among those on the daily diet. A reduction in systolic blood pressure reduces pressure on arteries, potentially lessening incidences of heart attacks and strokes. Further studies will be need to confirm the findings, as well as to understand the underlying mechanisms and to improve the tolerability of the 5:2 diet.


FACE TO FACE Ursula meets: Ursula Arens Writer; Nutrition & Dietetics Ursula has a degree in dietetics, and currently works as a freelance nutrition writer. She has been a columnist on nutrition for more than 30 years.

This month, Ursula meets an inspiring young dietitian with a story to tell . . . LONG LI Acute Services Dietitian BDA Yorkshire Branch PR Officer

Long Li had a few hours to spare, student status and so travel was booked between attending the BDA Live and farewell parties planned. But on conference in London and getting the the morning of travel, the postman train back to Leeds. Kings Cross was still shrugged his shoulders: there was the perfect place to find a warm quiet nothing. The last-chance saloon was the corner for a chat. But it was after-work airport postal sorting centre. Long said hours: every café and bar was loud and that postal staff made every attempt to packed. We walked past the quiet oasis be helpful, but nothing could be found of a shiny office reception area full of in the many systems they checked. But comfortable seats and we both had the then there was a ‘moment of magic’: same thought: surely Google HQ would someone pulled a random letter from not mind us having a huge pile, and this a little sit-down? was his essential visa But security staff “I used to be overweight, document. “I then had suggested perhaps not, but managed to get down less than an hour before so we had to squeeze the flight,” said Long. to a normal weight when The first term on the into a loud and packed I was a student. restaurant after all. MSc course ‘Nutrition, Long comes from Obesity and Health’ From then on I have Southwest China and was a steep uphill always been very completed an underchallenge. Of course, interested in foods graduate degree in language and cultural and health.” Pharmacy. Work for differences were full his degree was difficult of confusions for him. and required non-stop But further, the course seven days a week commitment. When was more maths and statistics and less some student friends began planning nutrition and health than he had been post-graduate education abroad, Long expecting. His project was analysis of thought ‘Me Too’ (without the #). A one- data from the government low-income year Master’s degree in Nutrition at Leeds diet survey and his results showed University seemed the perfect choice. that attitudes to health rather than But there were some obstacles, of cookery skills were a better predictor course. Firstly he would need to pass of diet quality. In hindsight, he now English Language assessment tests. appreciates the skills he acquired Months of intense tuition allowed him to in epidemiology and research pass all aspects, except for verbal skills, interpretation, even if this had not which required some further polish in been his initial plan. the UK. Secondly, he needed a student So, why did he choose Nutrition? visa. Leeds University confirmed his “I used to be overweight, but managed www.NHDmag.com May 2018 - Issue 134



While a student, Long joined the BDA Yorkshire Branch committee, where he currently champions all aspects of PR and communication. to get down to a normal weight when I was a student. From then on I have always been very interested in foods and health.” Long was not able to find a job, but kept busy with various volunteer projects, including supporting data analysis for research on childhood obesity. He had now encountered a few dietitians and thought it sounded a wonderful job. But getting onto a dietetic course was competitive. “Try some work shadowing,” someone advised. Long managed to find a dietitian who allowed him a day of professional insights and he was amazed. “I realised it was the perfect job.” So to whoever that inspiring dietitian is, a big “thank you”. Long started the two-year post graduate diploma in Dietetics at Leeds Beckett University and qualified in January 2016. His first and current job is as Acute Services Dietitian with the Mid Yorkshire Hospitals NHS Trust. “I really enjoy the many challenges of the job. In particular, I have come to appreciate the importance of research and its application in practice. I am sure I will get more involved in research in my future career,” said Long. He really enjoys being part of the multidisciplinary team, but has some concerns that the many skills of a dietitian are not fully appreciated by medical colleagues (as they should be.) “Why?” I asked. There was not an easy answer, but we agreed it might be because interventions from other professionals in an acute setting could have immediate observable and measurable effects; dietetic interventions contribute significantly to those effects, directly or indirectly, but may be less recognised or

overlooked by medical colleagues. This is why it is so important for dietitians to prove effective outcomes. Long made a comment on how upset he was when a friend had not realised that dietitians had a science qualification. While a student, Long joined the BDA Yorkshire Branch committee, where he currently champions all aspects of PR and communication. The Yorkshire Branch has offered a particularly successful parade of member events and meetings and deservedly won the BDA ‘Branch of the Year’ award last year: perhaps Long can take some small credit for this. “We opened meetings up to nutritionists and other healthcare professionals, so attendance has been excellent,” said Long. Long is an unusual UK dietitian on two counts (Chinese national and male). But more so, he is an unusual interviewee. Rather than listing achievements, he seemed careful to state any weakness or failing: he is not a Pharmacist, because he did not complete his practical year; he failed the verbal skills section of the English Test in China; he had trouble finding employment after obtaining his MSc. Another unusual aspect of Long as an interviewee, was how he made me break the first rule of doing interviews: don’t talk about yourself! Yes, Long is modest about his amazing achievements and is a great listener. And perhaps being modest and being a great listener describe two typical-dietitian traits. Long is sure to enjoy a great future career in the dietetic profession, but I feel he will always have the unfair advantage of ‘moments of magic’. I am smitten.

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ADULT FOOD ALLERGY: POLLEN FOOD SYNDROME Kate Roberts RD Clinical Dietetic Advisor, Allergy UK

In primary care, it is common to see adults developing reactions to food. These foods can seem obscure and the symptoms can be vague. Dietitians are well placed to investigate these symptoms further, help identify trigger foods and educate on how people can manage their allergies. This article delves into Pollen Food Syndrome (PFS) which is increasing in the UK. Specialist adult allergy centres are not common and PFS sufferers are mainly seen in primary care or in general dietetic clinics. On average, 2% of the adult population across the UK suffer with PFS, but this ranges from 0.8% in Aberdeen to 4.1% in Croydon.1 It most commonly affects adults who have Allergic Rhinitis (hay fever); the reactions are caused due to the proteins in the food that are similar to those in pollen. The body mistakes them for allergens and this causes an allergic reaction. This is most common in birch pollen, as the main allergen Bet v 1 is highly cross-reactive to many plant foods.2 It is estimated that 50-90% of people who are sensitised to birch pollen also have PFS.1 The prevalence of Allergic Rhinitis has trebled within the last 30 years3 and, therefore, it is very likely that this is a condition that will be seen more in primary care and general dietetic practice. SYMPTOMS

The symptoms of PFS usually occur quickly (usually within five to 10 minutes) after eating and commonly involve itching, tingling or a burning sensation within the mouth, ears or throat. Swelling is less common but can occur in the lips, tongue and throat.2 More uncommon reactions include rashes, nausea, vomiting, sneezing and a blocked nose. More serious reactions 12

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could occur if large amounts of trigger foods are consumed and in very rare cases PFS can cause anaphylaxis. PFS is often referred to as Oral Allergy Syndrome (OAS), a term used to describe Mugwort any crossreactive plant food allergies. These include latex and non-specific lipid transfer proteins (LTPs); these allergies are not as common in the UK as PFS and result in more severe allergic reactions.1 Sensitisation to LTP allergens is more common in Mediterranean countries. If you have a patient of Mediterranean origin with severe reactions to fruit such as peaches, it is important to refer immediately to a specialist allergy team. FOODS ASSOCIATED WITH PFS

The foods that people react to depend on the pollen that they are sensitised to. Reactions only occur when the foods are raw or lightly cooked which can cause confusion in those having the reactions. Table 1 shows the main foods associated with allergic reactions and as pollens vary in different countries, the common UK pollens have been highlighted.

Table 1: Pollen and associated food4 Pollen





Kiwi, peach, apple, nectarine, apricot, banana, pear, plum, avocado, cherry, fig, strawberry, dried plum

Potato, carrot, celery, chicory, cilantro, fennel, pepper (green), parsley, parsnip, dill, cumin, tomato, bean sprouts, coriander, mangetout, tomato

Hazelnut, almond, walnut, brazil nut

Soybeans, wheat, lentils, peas, beans, peanuts

Apple, melon, watermelon

Carrot, celery, parsley, coriander, pepper, cilantro, fennel, aniseed, celery salt, mustard, spices

Sunflower seeds

Fig, melon, orange, kiwi, watermelon

Tomato, potato, Swiss chard

Peanut, wheat

Banana, melon, honey dew, watermelon

Pepper, squash, cucumber, artichoke, hibiscus, chamomile tea

Sunflower seeds


Melon, watermelon, orange, kiwi


Apple, cherry, peach, pear, strawberry, raspberry

Celery, parsley

Alder Parietaria

Cherry, melon


Mugwort/ Wormwood*



Hazelnut, almond, walnut

*common in the UK

Dietitians are well placed to take a detailed diet history in order to identify pollens involved. The use of a food and symptom diary can also be a useful tool, especially if people are able to complete it before the consultation.

• Allergic Rhinitis (hay fever) • Eczema • Asthma • Food allergy (could be resolved) • Family history of allergies


Questions to ask: • What are the symptoms of the reactions? • Are there specific foods which they react to? • Do they have reactions to the foods every time (are the reactions reproducible)? • Are the reactions the same?

In a perfect world, people would be referred to a specialist adult allergy centre for a diagnosis of PFS. Diagnosis will be based on an allergyfocused clinical history and often involves skin prick testing. The gold standard of diagnosis is an oral food challenge.1 However, often people are referred straight from GPs to a general dietetic clinic. If you are seeing someone with suspected PFS it is important to get a good clinical history and in-depth and allergy focused diet history as symptoms can be vague. Do they have any of the following?

The algorithm in Figure 1 overleaf is a useful tool for diagnosis. MANAGEMENT

People with PFS will need to avoid raw foods which trigger reactions. As mentioned previously, cooking the foods will make them www.NHDmag.com May 2018 - Issue 134


CONDITIONS & DISORDERS Figure 1: Diagnosis algorithm to establish a reported reaction to food (RRF) and/or PFS1

less allergenic. Canned or pasteurised versions may also be tolerated. It is also possible that different varieties of foods may not have the same effect; for example, different varieties of apples or pears may not cause a reaction. Guides such as Table 1 are useful; however, there is no need to avoid food unless it causes symptoms. Eliminating multiple foods can result in a restricted diet, so it is important to ensure that estimated nutritional requirements are being met and that alternative sources of nutrition are suggested. When someone has a reaction, it is important that they stop eating the allergenic food. The symptoms should reduce naturally within 30

minutes; sipping water may help. Antihistamines can be prescribed to treat symptoms and, in rare cases, an adrenaline auto-injector (AAI) may be prescribed. People with asthma are more at risk of severe reactions and it is highly important that the asthma is well controlled. CONCLUSION

PFS is a common allergy in adults and is likely to increase in prevalence. Dietitians are well placed to help with diagnosis and management. Further information and support for healthcare professionals and patients can be found on the Allergy UK website www.allergyuk.org/.

References 1 Skypala IJ et al (2013). The prevalence of PFS and prevalence and characteristics of reported food allergy; a survey of UK adults aged 18-75 incorporating a validated PFS diagnostic questionnaire. Clinical & Experimental Allergy, 43, 928-940. doi: 10.1111/cea.12104 2 Allergy UK. Oral Allergy Syndrome Factsheet www.allergyuk.org/information-and-advice/conditions-and-symptoms/36-types-of-food-allergy 3 Gupta R et al (2007). Time trends in allergic disorders in the UK. Thorax. 2007 Jan; 62(1): 91-96. doi: 10.1136/thx.2004.038844 4 Kelava N et al (2014). Oral Allergy Syndrome - the need of a multidisciplinary approach. Acta Clin Croat 2014; 53: 210-219


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NON-COELIAC GLUTEN SENSITIVITY Rebecca Gasche Registered Dietitian Countess of Chester Hospital NHS Trust Rebecca has a keen interest and specialises in gastroenterology dietetics. She currently works in the community setting in the Chester area, running clinics and group sessions to manage a wide range of gastroenterology conditions.

REFERENCES For full article references please CLICK HERE . . .


Non-coeliac gluten sensitivity (NCGS). Heard of it? If not, be prepared to. NCGS remains a relatively new condition, but one which is now being recognised in countries all over the world and, therefore, plenty of new research is being undertaken. In this article, I will discuss the signs, symptoms, how it differs from other wheat-related conditions and how we should be managing it as healthcare professionals. NCGS was first described in 1976 and 1978,1,2 however, it has only been within more recent years that emerging studies have identified a group of patients being affected by gluten, but who lack a diagnosis of coeliac disease or wheat allergy. It was at the second expert meeting on gluten sensitivity that this condition got its new label, NCGS, to prevent confusion with coeliac disease.3 It is estimated that NCGS affects between 1-13% of the population,4,5 although a systematic review on the evolving evidence on NCGS concluded a significant variability in prevalence rates. This is thought to be due to NCGS often being self-reported and, therefore, difficult to capture, and also due to the studies using different inclusion and exclusion criteria.4 NCGS is one of three wheat-related conditions and has a clinical picture similar to that of coeliac disease and irritable bowel syndrome (IBS). Coeliac UK categorise the common conditions caused by wheat into the following: coeliac disease, wheat allergy and NCGS:6 • Coeliac disease is a lifelong autoimmune disease, where the body’s immune system attacks itself when gluten is ingested, resulting in damage to the microvilli in the lining of the small intestine, which ultimately affects the body’s ability to absorb nutrients from food. Associated conditions with coeliac disease include iron deficiency

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anaemia and osteoporosis. Gluten is a protein found in not only wheat, but also barley and rye. It is estimated to affect around 1% of the UK population.7 • Wheat allergy is potentially a serious condition, but estimated to be rare and is caused by a reaction to the proteins found in wheat, which is triggered by the immune system.6 It differs from coeliac disease as it is an immunoglobulin E (IGE) mediated response.8 A reaction to wheat in someone with a wheat allergy usually occurs within seconds or minutes of consuming wheat, and can range from a rash or an itchy sensation in the mouth, to throat swelling, difficulty breathing and in rare cases, anaphylactic shock.9 • NCGS can be described as when symptoms similar to coeliac disease are experienced, but there are no associated antibodies and no damage to the lining of the gut, that you would find in coeliac disease. These symptoms may occur several hours or days following gluten ingestion.6 WHAT TO LOOK OUT FOR

Patients may complain of symptoms similar to that of IBS, including intestinal and extra-intestinal manifestations, which occur after consuming gluten.10 Common symptoms can be seen in Table 1.11

Table 1: Common symptoms of NCGS11 Gastrointestinal symptoms

General Symptoms


Lack of well being

Abdominal pain


Diarrhoea or constipation


Upper abdominal pain



Mental confusion (‘foggy mind’)

Gastro-oesophageal reflux

Numbness in arms and legs

Aphthous stomatitis

Fibromyalgia-like joint and muscle pain

Heartburn or vomiting





There are currently no guidelines on the diagnosis of NCGS, but reviews generally conclude that a diagnosis can be considered when there is a clear link between gluten and symptoms, but coeliac disease serology is negative and no villous atrophy is seen,12,13 essentially ruling out coeliac disease. The current NICE guidance advises that the gold standard for diagnosing coeliac disease is to test for total immunoglobulin A (IgA) and IgA tissue transglutaminase (tTG) as the first choice. IgA endomysial antibodies (EMA) may be used if IgA tTG is weakly positive, and immunoglobulin G (IgG) EMA, IgG deamidated gliadin peptide (DGP) or IgG tTG if may be considered if IgA is deficient. HLA DQ2/DQ8 testing should only be considered in the diagnosis of coeliac disease in specialist settings (for example, in children who are not having a biopsy, or in people who already have limited gluten ingestion and choose not to have a gluten challenge). If serology results are positive, the patient should be referred to a gastroenterologist specialist for an endoscopy and duodenal biopsy (to assess if there is damage to the microvilli), to confirm or exclude coeliac disease. Throughout the serology testing and biopsy, the patient must be on a gluten containing diet of 10g gluten/day for six weeks to provide true results.14 A wheat allergy may be excluded by a skin prick test and an IgE antibody test.15 Therefore, these tests should be completed before reaching a conclusion of NCGS. There is ongoing research into other potential diagnostic criteria for NCGS, with

some suggesting that an IgG anti-gliadin (IgG AGA) test may be of use, as IgG AGAs may be seen more frequently in NCGS.16 However, further research is needed before this can be recommended as a diagnostic feature of NCGS, as IgG AGAs may also be present in some patients with coeliac disease, as well as a small number of the healthy population.15 Once coeliac disease and wheat allergy have been ruled out, a further method to confirm a diagnosis of NCGS would be to follow a glutenfree diet, followed by a reintroduction of gluten. If symptoms improve on a gluten-free diet, and return when gluten is reintroduced, NCGS can be assumed.15 THE LOW FODMAP DIET

The treatment, or better said, management of symptoms for NCGS is to avoid gluten. But, how strictly this needs to be followed is yet to be confirmed. As NCGS differs from coeliac disease in the fact there is no autoimmune response and, therefore, no damage done to the small intestine, it is not as essential for patients to follow such a strict gluten-free diet. Studies have also shown that a small amount of gluten may be tolerated by patients with NCGS,17 and it may be possible for patients to reintroduce small amounts of gluten into their diets after following a glutenfree diet for one to two years. However, this tolerance is thought to be individual.18 As well as the more obvious gluten-free diet, there are other diets which may warrant consideration in the management of NCGS. With the symptoms of NCGS and IBS being so similar, www.NHDmag.com May 2018 - Issue 134



NCGS remains a new and upcoming condition, which definitely requires further research in the areas of its prevalence, how it could be diagnosed and how it is best managed. some studies have discussed the use of the low FODMAP (fermentable, oligo-saccharides, disaccharides, monosaccharides and polyols) diet being an alternative treatment for NCGS. FODMAPs are poorly absorbed carbohydrates, which can cause the symptoms of bloating, abdominal discomfort and an altered bowel habit in patients with IBS. A study by Biesiekierski et al reported that NCGS patients’ symptoms improved with the addition of a low FODMAP diet, rather than with a gluten-free diet alone.19 This is thought to be due to the fact the non-gluten components of wheat (fructans - a FODMAP) are known to induce symptoms in patients with IBS20 and, therefore, links to other high FODMAP foods may be seen in patients with NCGS. NCGS has also been linked to IBS, particularly diarrhoea prominent IBS, and may be termed as gluten-sensitive irritable bowel syndrome.21 Recent evidence has shown significant improvement in GI symptoms and tiredness levels during a low FODMAP diet and saw no effect of gluten in inducing change in any symptom in either a seven-day gluten challenge or a three-day rechallenge. These results highlight the likely impact that reducing FODMAPs and other dietary triggers may have in the NCGS patient group.19 However, further research and the need for more comparative studies on a gluten-free diet and a low FODMAP diet in NCGS patients is required, to continue guiding this therapeutic approach.22 THE ROLE OF THE HEALTHCARE PROFESSIONAL

The main role for healthcare professionals is to ensure that patients have first been screened for coeliac disease, as studies have shown that two in three patients with self-perceived NCGS did not have coeliac disease adequately excluded.23 This can in turn increase a patients’ risk of misdiagnosis and lead to inadequate management and screening of the associated 18

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complications of coeliac disease, if it is left untreated. In addition to this, healthcare professionals are important in guiding patients through their dietary modifications. As mentioned, this could be a complete gluten-free diet, a gluten challenge diet, or perhaps a low FODMAP diet. Reasons for this include the fact that a gluten-free diet can be markedly restrictive and, if not followed correctly, can be nutritionally inadequate - especially in fibre and B vitamins.24 Further studies have shown that at least 45% of patients with self-perceived NCGS who initiate a gluten-free diet have not undergone dietetic education to ensure nutritional adequacy,25 highlighting a further need for education provided by healthcare professionals. CONCLUSION

NCGS remains a new and upcoming condition, which definitely requires further research in the areas of its prevalence, how it could be diagnosed and how it is best managed. The current evidence concludes that the imperative role for healthcare professionals in the management of NCGS is firstly to ensure a correct diagnosis is made by ruling out coeliac disease and wheat allergy. This helps to ensure the correct dietary advice and follow up is provided to prevent potential longterm complications in coeliac disease. Healthcare professionals can also provide the correct diet suited to the patient, to ensure symptoms are well controlled without compromising the nutritional adequacy of the diet. The general consensus on treating NCGS is to follow a gluten-free diet; however, emerging evidence is questioning if this needs to be completely gluten-free or low gluten and includes the role of the low FODMAP diet in NCGS. Plenty more to learn, but I’m sure we’ll be hearing much more on NCGS in the future, with the hope of developing more structured pathways for the diagnosis and management of this condition.


KETOGENIC DIET THERAPY: LET THEM EAT FAT! Susan Wood Specialist Dietitian; Ketogenic Therapies, Matthew’s Friends Clinics & Charity Susan works full time for Matthew’s Friends Clinics and Charity as a specialist ketogenic dietitian, treating children and adults with drug resistant epilepsy and adults with brain tumours.

This article gives an insight into three very different adult cases; two with epilepsy, one with a brain tumour, and how ketogenic diet therapy has influenced the quality of their lives. A ketogenic diet (KD) is low in carbohydrate, high in fat and adequate in protein. It triggers a shift in metabolism that mimics the fasted state; leading to increased fat oxidation and ketogenesis. Ketogenic diet therapy (KDT) is widely implemented for children with drugresistant epilepsy and metabolic conditions such as Glut 1 deficiency disorders.1,2 Despite published evidence indicating feasibility, tolerability, and efficacy of KDT in adults similar to that in children, few epilepsy centres worldwide offer these therapies to adults.3 This also means that families

with children requiring KDT around the teenage to adult service transition stage, or those requiring continuation of their existing KDT beyond 18 years, have immense problems accessing services.4,5 The publication of randomised controlled trial evidence, equivalent to that endorsing KDT use in children, would make all the difference to adult service provision, but no such trial is on the horizon at present. In the meantime, around 30% of adults continue to live with drug-resistant epilepsy, enduring poor seizure control and an impaired quality of life.6

What is epilepsy?7 Epilepsy is simply a tendency to have seizures. A seizure happens when there is a sudden burst of intense electrical activity in the brain. This causes a temporary disruption to the way the brain normally works: an epileptic seizure. There are many different types of seizure with the effect dependent on where in the brain the seizure starts, the level of awareness during the seizure and whether the seizure involves movement or not. • A tonic clonic seizure can start in both sides of the brain, or one side of the brain and then spread to affect both sides. During the tonic phase, the person will lose consciousness, their muscles go stiff and, if standing, they will fall to the floor. They may make a sound as air is expelled from the chest, past the vocal chords and may bite down on their tongue, or the inside of their mouth. During the clonic phase, their limbs jerk quickly and rhythmically and they may lose control of their bladder and/or bowels. Breathing may also be affected, causing a blue tinge around their mouth. • An absence seizure results in the person being unconscious for a few seconds. They will suddenly stop doing whatever they are doing but will not fall. They may appear to be daydreaming or ‘switching off’, so sometimes these can be harder to notice. Their eyelids might flutter and there may be some slight jerking movements of their body or limbs. In longer absences, there might be some brief, repeated actions. They are unaware of their surroundings and cannot be brought out of it. Some people have hundreds of absences a day. They often have them in clusters of several, one after another, and they are often worse when they are waking up or drifting off to sleep. Typical absence seizures usually start in childhood or early adulthood. • Myoclonic seizures are sudden, short-lasting jerks that can affect some or all of the body. The jerking can be very mild, like a twitch, or it can be very forceful and may cause the person to throw something they are holding, or make them fall over.

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NUTRITION MANAGEMENT The following two cases illustrate the effect that KDT has had on the lives of very different adults with drug resistant epilepsy. MATTHEW Matthew is 22 years old. He lives with his parents who provide all his day-to-day care. Diagnosis: He has a complex syndrome with microcephaly, severe learning disability, drug resistant epilepsy, dysphagia (a gastrostomy was placed at one year of age), visual difficulties and intolerance to many additives. Epilepsy history: Matthew started having seizures at the age of seven. In 2016, prior to referral for KDT, he was having frequent absence seizures every few days and up to five times a day. He was also having clusters of tonic clonic seizures regularly every three to four weeks. For many days during the build up to these, he would become extremely irritable and hyperactive (shuffling around on his bottom), shouting, crying, hitting out and self-harming by biting, poking or punching himself. He would not sleep for days and, in desperation, to help other family members to sleep, his mum would drive him round in the night, so his continual noise would not disturb the others. He also had migraine activity in association with his seizures, would stop eating orally and would only manage relatively small volumes of his enteral feed before experiencing reflux. Despite having tried numerous anticonvulsive drugs with limited impact throughout his 14 years of living with epilepsy, and being unsuitable for epilepsy surgery, he was not referred for exploration of KDT until 21 years of age. Medications: Lacosamide, Gabapentin and regular use of Midazolam as rescue medication during seizure cycles. Over seven different anticonvulsant medications had been tried off and on over the years with inadequate control of seizures and associated symptoms. “We asked about ketogenic therapy when Matthew was a young teenager, but the neurologist at the time was dismissive and suggested that there were a couple of new drugs coming onto the market that they might try. Still, nothing worked and by 2016 Matthew’s quality of life was zero. The local neurology team were unable to give us any assistance to manage his seizures, pain and distressed behaviour and the whole family was at breaking point, even considering taking him to Switzerland to end his immense suffering. In desperation I called an Epilepsy Charity helpline and they suggested we ask for a referral to a specialist epilepsy centre for assessment. Eventually, after much chasing and waiting, we got there and the alteration of his medications led to a slight improvement in his distressing seizure, symptom cycle. We also got a chance to ask about ketogenic therapy again and a referral to a specialist ketogenic team was finally agreed. After many months delay, awaiting CCG funding, we started KDT. ” Matthew’s parents Pre KDT intake: • Enteral: Neocate Advance (now Neocate Junior - Nutricia), Prosource TF (Nutrinovo), LoSalt plus olive oil. Approx 118g carbohydrate, 34g protein, 43g fat and 1000kcal. • Oral: Stage 1 baby foods; fruit and fruit porridge variants, mashed banana, pureed prunes, soya yoghurt. • Total energy intake, very variable but likely around 1200-1400kcal. • Weight 34kg. Height estimated to be 1.2m. KDT started March 2017. Current KDT intake: Matthew is on a Classical ketogenic diet; ratio 1.7 (i.e. 1.7g fat to every 1g (protein + carbohydrate combined)). • Enteral: Ketocal 4:1 powder (Nutricia), Prosource TF (Nutrinovo), Maxijul (Nutricia) and LoSalt (providing 9g carbohydrate, 37g protein, 74g fat and 850kcal). • Oral: Two portions daily of Coyo (coconut) yoghurt plus stewed fruit (providing 24gCHO, 10g protein and 82g fat and 875kcal). • Total energy intake estimated around 1700kcal. • Weight 40kg. • Blood glucose 3.2-4.9mmol/l, blood ketones 1.0-3.9mmol/l. Outcome Matthew responded extremely rapidly to his ketogenic feed and food change and his cycle of seizures and associated behaviours was halted immediately. It turns out that Matthew’s seizures are very responsive to KDT and he is now seizure free; a result we see in around 10% of cases of drug resistant epilepsy. Continued overleaf www.NHDmag.com May 2018 - Issue 134


NUTRITION MANAGEMENT MATTHEW (continued) “The epilepsy took Matthew’s quality of life away. As a result of the ketogenic diet, we’ve got Matthew back - he’s no longer hyperactive, now laid back about everything. He now sleeps much better at night’; he no longer needs to wear a bib all the time (he soaked over 20 thick towelling bibs per day due to dribbling) and the circulation in his hands and feet has improved immensely; they are not cold and white anymore. He is the heaviest he has ever been, seems stronger and no longer catches every bug that is going. His medications are being gradually tapered to see how much, if any needs to remain.” Matthew’s parents ELAINE Elaine is 51 years old and lives with her husband and their two children. Diagnosis: Elaine has a generalised epilepsy syndrome with tonic clonic seizures, absences and myoclonic jerks and a history of cervical dystonia, requiring regular botulinum injections across face, neck and shoulders. She also experiences generalised motor dysfunction and extreme muscle stiffness. Epilepsy history: Elaine developed absence seizures before school age, with tonic clonic and other seizure types emerging during her school years and continuing into adult hood. Seizure control worsened over the last 10-15 years, with daily life disrupted by 20-30 absence seizures per day with the peaks occurring first thing in the morning and then again in the afternoon. She slept very poorly at night. By 2016, the escalation in symptoms resulted in four hospital admissions in three months and she was unable to function normally. Medications: Lamotrigine. At least another 10 anticonvulsant medications had been tried over the years. “I was on a combination of three anticonvulsants and the side effects were atrocious. I had no support at all. It was my family who brought me through multiple hospital admissions through A & E. In May 2016, I was having one seizure after another. I was referred to neurology services twice as an emergency. No neurologists available. There was a massive emotional impact on my children and my husband and there were many tears as I was becoming more dysfunctional. I was having absences all the time; I was unable to follow a phone conversation; I would have to ask what an object was, in the same way that a two-year-old would ask. I walked like I’d had a few vodkas with breakfast. I could have fallen asleep while sitting on a pin. I could no longer feel life. “August 2016 was my pivotal moment. I was very unwell. My muscles were moving involuntarily. I had been awake constantly for days. I couldn’t close my eyes. Every drawer in my brain was open and I was being bombarded with images. And then, everything stopped working. I crumpled and couldn’t talk. An ambulance was called. I was locked into a body that wasn’t responding. I told myself to stay calm and breath. When I came out of hospital after a number of days I had two sticks and had to learn how to do things again. I felt locked into my body.” Elaine Pre KDT intake: Elaine initiated a ketogenic diet in November 2016, after reading research papers and ketogenic diet books extensively. Weight 68kg approx. Height 1.65m. BMI 25 kg/m2. Supervised KDT started October 2017. Current KDT intake: • A modified ketogenic diet of 13-14g carbohydrate and 225g fat. • Protein intake not measured but moderate. Total energy intake estimated around 2360kcal. • Elaine chooses to keep her meals simple due to her history of intolerance to certain items. Meals are made from: coconut oil, olive oil, butter, double cream, meats cheese, eggs, nuts, nut flours and nut butters, berries, and vegetables. • Micronutrient supplementation; a one-a-day multivitamin and mineral, plus additional magnesium supplementation. • Weight stable at 56-56.5kg. A 12kg loss (desired) in one year on self-initiated KD. • Elaine feels her best symptomatic control is when blood glucose in the 3-4mmol/l range and blood ketones are 5-6mmol/l. Outcome “I withdrew all sugar. Easy? Definitely not. The healthy plate that had been the mainstay in our house had to be psychologically binned. That’s difficult. If I wanted ketones to keep my brain happy, then I had to fuel with intelligence and knowledge. I felt no changes for 14 days. And then (I just cannot explain what happened), my world changed. Two weeks that’s all it took. TWO WEEKS.” Elaine


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ELAINE (continued) Elaine initiated a ketogenic diet in November 2016 after reading research papers and ketogenic diet books extensively and managed extremely well under the difficult circumstances. Our specialist role was to help her to fine tune the regime to stabilise her fuelling through her day to gain more consistent control over her symptoms. The absence seizures have all but disappeared, her sleeping has improved significantly and her muscle tone has relaxed. However, recent episodes of pneumonia and hospitalisation have challenged her metabolic control significantly. Elaine is a very unusual case, with seizures and motor dysfunction that may connected in some way. She has a family history of epilepsy and Friedreich’s Ataxia and is currently awaiting the results of genetic screening for Glucose Transporter 1 Deficiency.


Contrary to improvements in the quality of life and survival for many cancers, the outcome for those with malignant brain tumours has not improved in decades. Research conducted by Otto Warburg in the 1920s onwards, led to his proposal that tumour cells typically display a shift in metabolism characterised by an increased reliance on glycolysis even in the presence of oxygen; a fundamental difference from the metabolic characteristics of healthy cells of the same origin. While knowledge of oncogenetics and the development of targeted therapies has expanded and progressed significantly, exploitation of the basic metabolic variance between healthy cells and cancer cells has been slow to progress. Preclinical studies in mouse models of high grade brain tumours and metastatic cancer suggest that a KD alters the regulation of multiple pathways associated with tumour growth and progression; reducing blood glucose and insulin levels, modulating

oxidative stress, down regulating inflammatory pathways, upregulating the host immune response and modifying tumour gene expression.8 Therefore, it is no surprise that those facing a brain tumour diagnosis may consider their options and decide to try a KD alongside their standard care (surgery, chemotherapy and radiotherapy) and ask for professional clinical help with this. With KDT services not even readily accessible to adults with epilepsy, it is no surprise that support for adults with brain tumours is practically non-existent. It is for this reason that we provide charitable dietetic support to adult brain tumour cases who approach us for help; enabling them to explore KDT appropriate to their needs as a means of, a) improving their quality of life (particularly in relation to fatigue and seizure management) and b) achieving nutritional ketosis. It will be some time before mechanisms and any certainty about the impact of KDT on brain tumours emerge. In the meantime, those who want further information can read the existing evidence and make their own decisions.

What is a brain tumour?9 The commonest type of primary brain tumours are the gliomas. They develop from the glial cells that support the nerve cells of the brain. Grade 1 tumours are benign, whereas Grade 2-4 gliomas are malignant. Symptoms, treatment and prognosis can vary widely, even for patients with the same histological subtype of tumour, being also dependent on molecular profile and tumour location within the central nervous system. The median survival for Grade 2 gliomas is seven to 10 years while Grade 4 gliomas have a median survival of 12-15 months. Brain tumours are the leading cause of cancer-related death in patients under the age of 40. HEATHER Heather is 46 years old and lives with her husband and their two children. Diagnosis: Heather had a glioblastoma multiforme (a Grade 4 glioma) diagnosed in July 2017. Treatment: She had surgery to remove the tumour followed by six weeks of radiotherapy and chemotherapy. Heather is currently undergoing monthly cycles of high dose temozolomide chemotherapy. Continued overleaf www.NHDmag.com May 2018 - Issue 134


NUTRITION MANAGEMENT HEATHER (continued) “I had a Grade 4 Glioblastoma removed in July 2017 following a collapse or fit-type of episode. My surgeon mentioned looking into a low carb diet. The neurosurgical nurse told me to make it my business to research the diet, but no one gave us further information. I then met with my neurologist who is also a friend and she asked me if I knew about the ketogenic diet and to look into it. Stefan my husband looked at the research with mice and if there were any negatives about the diet and we decided it was a very important thing to do. I was recovering from brain surgery and started eating low carb within a couple of weeks of coming out of hospital albeit a bit of guessing! I recovered from surgery very quickly and after a couple of weeks of feeling tired and dizzy (may have been the diet, but mixed with recovery), I felt as though I had a lot more energy and didn’t feel as tired as normal and was able to get out for long dog walks very quickly. I have continued to feel very well. I have to admit that I found the process of changing diet quite difficult to begin with. I was very anxious and threw myself into it without knowing what I was doing. I had very little appetite due to anxiety at the time. I craved carbohydrate a lot! Especially cereal which I had been snacking on pretty much all day most days on top of my meals I had been what I considered to be very healthy with a very healthy diet. I ate a lot of carbohydrate and exercised until I was exhausted a lot of the time. I could not relax unless I had trained so that I could eat. Mentally, it was quite a lot to try to ‘retrain’ my brain into thinking that fat is not bad and that I actually don’t need to eat my own weight in fruit and veg to be healthy. This has become a lot easier seeing the results and feeling so much better. Not only have the changes been maintained, but my whole family has changed how they eat and feel better for it. We are getting used to building meals from scratch and working out the content of meals.” Heather Initial KDT intake: • Dietary intake at the early stages of adopting her ketogenic diet was approximately: 12g carbohydrate, 70g protein, 130g fat and 1400kcal. • Weight 51kg, Height 1.65m, BMI 18.7kg/m2. Current KDT intake: A Modified ketogenic diet providing: 18-20g carbohydrate and around 160g added fats perday. Protein is not measured but around 70g per day. • Energy intake around 2000kcal. • Weight 47kg, BMI 17kg/m2. • Blood ketones generally 1.5-2mmol/l currently. Heather uses our Colour & Shine adult recipe booklet as a basis for some of her meals and has adapted and added to these to suit her tastes and requirements. “A typical breakfast would be a breakfast pancake (I add a little Stevia to the mix and I have a bit more cream on the pancake). I might make a porridge from milled flaxseed with double cream and a bit of MCT oil added to the mix and serve with more cream and berries. I also use the nut granola and make a batch to draw on as it’s quick. Lunch and dinner vary from a made recipe to more frequently a piece of fish/ chicken with either salad or cooked veg and a coconut roll with butter. I add more fat by either cooking the vegetables in coconut oil or adding olive oil / MCT oil to salad. I have found that a lot of my meals can look traditionally healthy with salads and fish. That surprised me when I had visions of having to eat butter out of the packet. My taste buds have changed a huge amount. I can taste things so much better and really enjoy all the food I eat.” Heather

New to Ketogenic therapy? Or needing a refresher course and an opportunity to network with other Ketogenic teams? MATTHEW’S FRIENDS WILL BE HOSTING THEIR ANNUAL KETOCOLLEGE PROGRAMME 19TH – 21ST JUNE 2018 AT THE CROWNE PLAZA FELBRIDGE, EAST GRINSTEAD, WEST SUSSEX, RH19 2BH, UK For further details please visit www.mfclinics.com or to register your interest please email: ketocollege@mfclinics.com KetoCollege is immediately followed by the 2nd European Glut1 Conference 22&23 June 2018. Visit www.matthewsfriends.org/glut1uk/euroconf for details.


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In this article, we have discussed three cases to tell you what ketogenic therapy has meant to each person. There are many more adults out there for whom KDT could make a difference. If you would like to learn more about KDT, do join us at our three-day course: KetoCollege 2018.10 MATTHEW'S FRIENDS

Matthew’s Friends is a charity that specialises in Medical Ketogenic Dietary Therapies and has been working alongside NHS ketogenic therapy teams, offering information and support since 2004, for those on a medically supervised therapy. In September 2011, we opened the first Matthew’s Friends Clinic at Young Epilepsy as a means of providing a tertiary level clinical service to increase the availability of Ketogenic Dietary Therapy to children and adults with drug resistant epilepsy in the UK where no local provision is currently available. The small experienced team of ketogenic dietitians, ketogenic diet assistants and a neurologist is led by neurologist Professor J Helen Cross OBE. In 2016, we launched Matthew’s Friends KetoCollege, which is an annual training meeting for medical professionals wanting to work in the field of medical ketogenic dietary therapies. References 1 Neal EG, Chaffe HM, Schwartz RH, Lawson M, Edwards N et al. The ketogenic diet in the treatment of epilepsy in children: a randomised, controlled trial. Lancet Neurology 2008; 7:500-506 2 Kass HR, Winesett SP, Bessone SK, Turner Z, Kossoff EH. Use of dietary therapies amongst patients with GLUT1 deficiency syndrome. Seizure 2016; 35:83-7 3 Fang Y, Xiao-Jai L, Wan-Lin J, Hong-Bin S, Jie L. Efficacy of and patient compliance with a ketogenic diet in adults with intractable epilepsy: A meta-analysis. J Clin Neurol 2015; 11(1): 26-31 4 Nabbout R, Camfield CS, Andrade DM, Arzimanoglou A, Chiron C et al. Treatment issues for children with epilepsy transitioning to adult care. Epilepsy Behav. 2017; 69:153-160 5 www.matthewsfriends.org/medical-section/keto-centres 6 www.epilepsy.org.uk/press/facts (accessed 23.3.18) 7 www.epilepsy.org.uk/info/seizures-explained (accessed 23.3.18) 8 Poff A, Koutnik AP, Egan KM, Sahebjam S, D’Agostino D, et al. Targeting the Warburg effect for cancer treatment: Ketogenic diets for management of glioma. Seminars in Cancer Biology 2018, https://doi.org/ 10.1016/j.semcancer.2017.12.011 9 www.braintumourresearch.org/info-support/what-is-a-brain-tumour (accessed 23.3.18) 10 www.mfclinics.com/keto-college/ (accessed 23.3.18)

Established in January 2017, the Ketogenic Dietitians Research Network is a group of paediatric and adult ketogenic dietitians and researchers, with the aims to: • provide a support network for dietitians undertaking, or interested in undertaking, ketogenic diet (KD)-related research; • share practice and research ideas between ketogenic centres; • seek funded research time for dietetic-lead projects; • promote evidence-based practice by publishing results from our projects, and through sharing and review of relevant journal articles. Our dedicated and enthusiastic team presented results of our first project at the British Paediatric Neurology Association conference in January 2018: ‘NICE to know: Impact of NICE Guidelines on Ketogenic Diet Services Nationwide’. The team is also currently working on the below projects: • Nutritional biochemistry and KDs: outline of current UK practice of nutritional blood tests for patients starting or following a KD, and future recommendations. • Modified ketogenic diets - ‘How MAD are we?’: an overview of adult and paediatric modified ketogenic diet practice in the UK and how this differs to the Modified Atkin's diet. If you are a dietitian or dietetic support worker working in ketogenic-related clinical practice, academia or industry and are interested in joining the group, or collaborating with us, we would love to hear from you. We also offer Associate Membership for dietitians not currently practicing in ketogenic and for other healthcare professionals.

Please contact Dr Natasha Schoeler via email: n.schoeler@ucl.ac.uk.

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WHOLEGRAINS IN THE UK Emma Berry Registered Associate Nutritionist Emma is a recent Nutrition graduate with an interest in public health nutrition.

REFERENCES For full article references please CLICK HERE . . .


The most recent Scientific Advisory Committee of Nutrition (SACN) report on Carbohydrates and Health1 was heavily discussed in the media due to its change in the guidance related to the consumption of free sugars.2 Free sugars were advised to be less than 5% of the total daily intake, which was met with much controversy. However, there was also found to be a change in the guidelines related to fibre intakes. Fibre intake was advised to increase to 30g/day (as defined by AOAC fibre) for an adult aged over 18, through eating more wholegrains and cereal fibres. This increase is fairly substantial compared to the previous guidance to consume 23-24g/day.1 30g of fibre a day would be the equivalent of five portions of fruits and vegetables, two slices of wholemeal bread, a portion of high fibre breakfast cereal, a baked potato and a portion of whole wheat pasta.1 Following the report, the British Nutrition Society developed a sample menu to demonstrate how the increase in daily fibre intake could be achieved.3 The sample menu demonstrates a sevenday food plan, which consists of three meals and two snacks per day. It also details the nutritional values of each day. Despite the SACN guidance encouraging us to increase the consumption of wholegrains, there is no established definition for what a wholegrain food consists of, or any recommendations on the amount of wholegrain foods to consume. The SACN report1 advised foods which are considered wholegrains to be whole wheat, whole wheat flour, wheat flakes, whole and rolled oats, brown rice, oat flakes, bulgur wheat, whole rye and flour, whole barley and oatmeal. Work has been carried out to find a way to define what a wholegrain food is since this report. The Healthgrain Forum has been promoting research into defining

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wholegrain foods and encouraging consumption of wholegrains within the diet.4 The Healthgrain Forum definition of wholegrain consists of the endosperm, germ and bran being present in the same proportions as they would be in the kernel.5 These kernels can be intact, ground, cracked or flaked and the inedible parts can be removed. Figure 1 demonstrates the components of a wholegrain. The skin of the kernel is the bran, which has multiple layers and contains various nutrients. Inside the kernel is the endosperm and the germ. The endosperm is the largest part of the kernel, and contains carbohydrates, proteins and some vitamins. The germ has the potential to produce a new plant and is a source of vitamins, minerals, some protein and healthy fats. In white bread and white rice, the germ and bran are normally filtered out and the endosperm is the only remaining part of the kernel.6 The recent paper from the Healthgrain Forum put forward recommendations for a new definition to encourage universally consistent food labelling so that consumers are able to easily identify how much wholegrains are found within the food.5 The suggested labels were: 1 100% Whole Grain; 2 Whole Grain Foods (≼50% of grain is whole); 3 Foods contributing to Whole Grains (≼8g whole grains/serving).5

Figure 1: Components of a wholegrain. Diagram adapted from The Whole Grains Council.6

The skin of the kernel is the bran, which has multiple layers and contains various nutrients. The endosperm is the largest part of the kernel, and contains carbohydrates, proteins and some vitamins. The germ has the potential to produce a new plant and is a source of vitamins, minerals, some protein and healthy fats. This could make it clearer for consumers as to how much wholegrains are found within food and make it easier for them to identify wholegrain foods. This is important if we are to try and increase consumption of wholegrains within the general public. Although the UK currently has no specific recommendations for the daily amount of wholegrains to consume, some other countries do offer a guideline amount. Mann et al7 compared several countries' wholegrain consumption to the guidelines provided by the USA. These guidelines suggest an intake of 48-80g per day of wholegrains, with the study finding that in the UK National Diet and Nutrition Survey 20082011 data, only 17% met the minimum intake of 48g per day. The main intakes of wholegrains consumed came in the form of breads, breakfast cereals and a small amount from pasta. Although this data may be slightly outdated, it is likely that we may still not be consuming enough wholegrain foods. HEALTH BENEFITS

The SACN report outlined wholegrain consumption to be beneficial to cardiovascular health, as well as being linked to a reduced incidence of Type 2 diabetes and colon cancer.1 However, as the report admits a variation in the definition of wholegrain foods, the inference

of the studies discussed is quite limited. Since the SACN report, there have been further studies discussing the benefit of wholegrains. A recent systematic review found a positive association for wholegrain consumption and coronary heart disease, cardiovascular disease and cancer, as well as all-cause mortality. The mechanisms suggested for this include a general increase in fibre, with a higher level of wholegrains consumed; a reduced level of obesity with higher wholegrain consumption and a reduction in inflammation.8 However, there has been the suggestion that increased wholegrain consumption is found to correlate with higher consumption of other foods such as milk, yoghurt, fruits and vegetables.9 In a study of the National Diet and Nutrition Survey, individuals who consumed wholegrains were found to have a higher range of various nutrients compared to individuals who did not consume wholegrains. Nutrients included iron, calcium, potassium, phosphorus, thiamine and magnesium.10 From the same sample, it was found that over 70% of the participants did not consume the minimum recommended amount of wholegrains from the US. Therefore, it is important to establish if the suspected impact of wholegrains on health is wholegrain specific, or that individuals who have a higher consumption of wholegrains may have a higher intake of fibre www.NHDmag.com May 2018 - Issue 134



. . . wholegrains are an important addition to an individual’s diet. They are linked to numerous health benefits and are also linked to an increase in fibre consumption, which in itself has a benefit to health. and a healthier diet in general. It’s also important to note that if the majority of the population are struggling to consume enough wholegrains, then this may need to become an important project for future public health campaigns within the UK. There have been numerous studies which have investigated how to improve wholegrain consumption, whilst also investigating the barriers to improving consumption. Kamar et al11 discussed the factors which impact adolescent consumption. The most well-known reasons for consuming wholegrains were their positive impact on the digestive system and that they were a source of longer lasting energy. However, the participants were often confused by the various food labels - using brown bread as an example of wholegrain food, supporting the importance of the clear labelling as suggested by the Healthgrain Forum. Many participants advised that wholegrain food was not part of their normal diet and was not readily available to them. While some simply disliked the taste, texture or appearance of wholegrain foods, but this depended on the individual. Although there hasn’t been much research into the barriers and facilitators of adult consumption of wholegrains in the UK, there has been work carried out in other countries. In a study by Chea et al,12 some of the barriers found included a lack of understanding about what a wholegrain food was, as well as the taste of wholegrains and the cost. This further supports the need for clear labelling, as suggested by the Healthgrain Forum. One way to encourage a higher level of wholegrain consumption is through industry reformulation. However, this is a significant challenge facing manufacturers to achieve a 28

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level of wholegrains which would be considered to be contributing to an improvement in health, while still being found palatable to the general public who don’t tend to eat much wholegrains. The foods developed need to be convenient and innovative approaches are required to take on this complex challenge.13 There should be future research into what barriers face the wholegrain consumption within adults in the UK. Research into identifying and reducing these barriers could increase the consumption of wholegrains and likely also improve the consumption of fibre. CONCLUSION

In conclusion, wholegrains are an important addition to an individual’s diet. They are linked to numerous health benefits and are also linked to an increase in fibre consumption, which in itself has a benefit to health. In other countries, there is a recommended guideline for how much wholegrain should be consumed daily, which the majority of the UK population does not meet. There are various barriers for individuals consuming more wholegrains. One major issue is a lack of consistency for how wholegrains are defined and how products containing wholegrains are labelled. Clarifying and standardising both of these, would help improve the public understanding of wholegrains. Reformulation could also be used to incorporate more wholegrains into processed foods, to increase the public consumption without individuals having to drastically change their diets. However, the first step is to establish a UK guideline for wholegrain consumption which the public can understand and use.


Maeve Hanan UK Registered Dietitian Freelance Maeve works as a Freelance Dietitian and also runs the blog Dietetically Speaking.com, which promotes evidence-based nutrition and fights nutritional nonsense.

REFERENCES For full article references please CLICK HERE . . .

WHEN AND HOW TO START COMPLEMENTARY FEEDING This article will examine the available evidence in relation to when and how to introduce complementary food in the context of UK guidelines. Complementary feeding, which is also referred to as weaning, is the process starting when breast milk alone is no longer sufficient to meet the nutritional requirements of infants and, therefore, other foods and liquids are needed, along with breast milk15 . This occurs at a time of rapid growth and development and is a learning process which involves exposure to new foods, tastes and feeding experiences. There is a relatively limited evidence base related to this, and a variety in complementary feeding practices between different countries.1 WHEN TO INTRODUCE FIRST FOODS

Introducing complementary foods too early poses the risk that the infant’s digestive system, immune system, kidneys and swallowing skills may not

have developed enough to cope with solids.2 Conversely, delaying weaning for too long may hinder the development of eating skills,3 as well as potentially missing the ‘window of opportunity’ for introducing a variety of food by nine to 10 months.4 Encouraging a good variety of food within this ‘window of opportunity’ is thought to reduce the risk of fussy eating in later life.4 There can be confusion about when exactly to introduce complementary foods; Table 1 summarises the main points from guidelines related to this. The current UK guidelines promote waiting until six months to begin weaning, because ‘a succession of randomised trials have shown that giving complementary foods to breastfed infants before six months compromises

Table 1: Current guidelines on weaning summarised Organisation (year)


UK Department of Health (1994)

No solids to be introduced before four months and to offer a mixed diet by six months.

WHO (2001)

Exclusive breastfeeding until six months of age, introduce complementary foods at six months while continuing to breastfeed.

UK Department of Health (2003)

Exclusive breastfeeding for the first six months of an infant’s life, introduce solids at six months (while continuing to breastfeed).

ESPGHAN (2017)

Complementary foods should not be introduced before four months, but should not be delayed beyond six months.

SACN Draft Guideline (2017)

First complementary foods should be encouraged from around six months of age, no infant should begin complementary feeding prior to four months of age. www.NHDmag.com May 2018 - Issue 134


PAEDIATRIC Table 2: Monitoring signs of readiness14 Signs of readiness

Mistaken signs of readiness

Can be easily supported in a sitting position and hold their head in a stable position.

Waking during the night when they have previously slept through.

Can co-ordinate their eyes, hands and mouth to look at food or other objects (e.g. toys), pick it up and put it in their mouth by themselves.

Seeming more hungry or wanting extra milk feeds usually related to a growth spurt.

Can swallow food rather than push it back out of their mouth with their tongue. Making ‘munching’ movements with the mouth when putting things to their mouth. Seems alert and showing interest in other people eating.

breastmilk intake without increasing total energy intake, or increasing weight gain and is associated with other negative health outcomes [including a higher incidence of gastrointestinal and respiratory infections]’.5 Although it is agreed that it is important to wait until six months if using the baby-led weaning approach, there is some disagreement about waiting until six months if starting to wean with introducing purees. For example, this doesn’t take into account individual circumstances and some babies may be ready for complementary food between four to six months (see Table 2). Also, these guidelines are based on the benefits of exclusive breastfeeding, which may not apply to formula fed babies. ESPGHAN’s position paper on complementary feeding in 2017 also highlighted that ‘data suggests there may be some beneficial effect on iron stores of introducing complementary foods alongside breastfeeding from four months, even in populations at low risk for iron deficiency’.1 In addition, there is research in relation to potential allergenic foods to consider. There appears to be an increased risk of allergy if solids are introduced before three to four months,6 ESPGHAN (2017) highlights that ‘allergenic foods may be introduced when complementary feeding is commenced any time after four months. Infants at high risk of peanut allergy (those with severe eczema, egg allergy, or both) should have peanut introduced between four and 11 months’ (ESPGHAN 2017).1 For example, a recent meta-analysis concluded that there was moderate-certainty evidence that introducing 30

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Chewing fists. It is also not required for baby to: • reach a specific weight; • be able to take food from a spoon cleanly in one go; • be able to keep their tongue in when food is put into their mouths.

egg and peanut at four to six months was associated with reduced egg and peanut allergy respectively.7 It is important to note that infants at high risk of egg or peanut allergy are advised to ‘seek medical advice before introducing these foods’.1,5,8 One of the most important things to consider about the timing of introducing complementary food is whether the individual infant seems ready for this. Therefore, it is important to monitor for signs of readiness (as outlined in the Table 2). HOW TO INTRODUCE FIRST FOODS

The two main approaches to introducing complementary foods are referred to as: ‘traditional weaning’ and ‘baby-led weaning’. Traditional weaning involves introducing foods appropriate to a baby’s age and development, starting with spoon feeding purees which can begin from four to six months if an infant is showing sufficient signs of readiness (although six months is the recommended age of introducing complementary foods in the UK).5 Baby-led weaning is when the infant feeds themselves hand-held foods at family mealtimes instead of being spoon-fed by an adult; therefore, it avoids the step of introducing puree foods. Advantages of this approach include that the infant has more control over what they are eating and it lends itself to a more responsive feeding style.1 There are some suggestions that baby-led weaning may promote better eating patterns and reduced obesity risk later in life; but there currently isn’t enough evidence to

Table 3: Stages of traditional weaning9 Initial Stage: Six months (or not before four months if parents choose to start earlier)

• To help the infant get used to taking food from a spoon (which is more important than the amount eaten at this stage). • Foods offered should be a smooth consistency and bland in taste. • When the infant has accepted eating from a spoon, different tastes and textures can be introduced.

Second Stage: Six to nine months

• Once a variety of food is accepted from a spoon two to three times per day, the infant is ready to try different textures of food and stronger tastes. • Family foods can be mashed or blended to a texture containing some soft lumps. • Soft finger foods will encourage the baby to put food into their mouth.

Third Stage: Nine to 12+ months

• Three main meals with snacks and/or drinks of milk in addition. • Cooked vegetables may only need to be chopped and some salad vegetables can be introduced. • Finger foods are popular and should be included at each meal so baby can self-feed. • By the end of this stage full family diet can be offered.

Table 4: Tips for responsive feeding13 Respond promptly and predictably to signs of hunger and fullness. Warm and nurturing feeding environment. ‘Parent provide, child decide’ approach. Avoid feeding to comfort or as a reward. Never force the infant to eat. Allow enough time to feed at the infant’s pace. Establish good feeding routines. Encourage self-feeding and messy play. Model good eating habits and eat together.

support whether this is the case.1 It has been highlighted that there also isn’t enough evidence whether infants can consume a nutritionally adequate diet using this method (especially in terms of energy and iron).10 However, an approach called ‘Baby-Led Introduction to SolidS’ (BLISS) has been developed which provides guidance on avoiding choking hazards as well as encouraging iron and energy-rich complementary foods.11 Again, there isn’t currently enough evidence to make a judgment on whether baby-led or traditional weaning is more beneficial, as no randomised controlled trials (RCT) have compared both methods; however, an RCT related to the BLISS study is currently underway.5 In practice, it is best for families to weigh up the pros and cons of each method individually. Regardless of whether traditional or babyled weaning is used, there appear to be benefits

of a ‘responsive’ feeding style which is a warm and supportive approach which avoids being too controlling or restrictive of intake.1,12 More information on the specific types of food to introduce or avoid can be found at: www. nhs.uk/start4life/first-foods and www.NHS.uk ‘Your Baby’s First Solids’. CONCLUSION

There is ongoing research in relation to when and how to introduce complementary feeding. Current UK guidelines recommend starting at around six months and not before four months of age. In terms of how to start, there is not enough evidence to suggest that traditional or baby-led weaning is more beneficial. However, a responsive feeding style seems to be positive in both contexts. It will be interesting to see the finalised version of the SACN report Feeding in the First Year of Life when it is released. www.NHDmag.com May 2018 - Issue 134


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INFANT WEANING AND DEVELOPMENT OF TASTE PREFERENCES Jacqui Lowdon Paediatric Dietitian, Leeds Children’s Hospital Jacqui is a Clinical Specialist in Paediatric Cystic Fibrosis at Leeds Children's Hospital. She 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.

REFERENCES For full article references please CLICK HERE . . .

Taste is one of our fundamental senses, essential for us to be able to ingest nutritious food and to be able to detect and avoid potentially poisonous ones. During the early years, the foundations for healthy growth and development are laid down. Complementary feeding, that is when foods other than milk are first introduced (commonly referred to as weaning), is a critical feature of this time, both in terms of nutrition and eating behaviours.1 As we tend to eat food that we like, the most important aspect to acquire during these early years should be to develop a preference for certain foods that may contribute towards good health. Strong correlations have been found between food preferences during early childhood and preferences in later childhood,2 adolescence3 and young adulthood.4 This implicates early experience as a foundation for food preference development across the course of our life. THE BASIC TASTES

During the first year of life, we are receptive to all five basic tastes, with varying extents, but willing to try most new foods.5 However, it is well documented that from birth, humans prefer sweet, salty and umami tastes over bitter or sour.6,7 Umami is a strong taste, often referred to as ‘the fifth taste’, that is not sweet, sour, salty, or bitter. It is the intensely savoury taste imparted by glutamates that occur naturally in many foods such as meat, fish and vegetables. More recently, fatty acids and calcium have emerged as potential tastants that can be sensed by taste bud cells.8-12 Humans can also quickly learn to like foods that are energy dense.13 For example, children may be more sensitive to certain tastes (for example, sweet) during periods of maximal growth,14,15 which has been hypothesised to help choose foods that will support rapid development.14

Exposure to a variety of foods during the complementary feeding period helps with the acceptance of new foods in the first year, whereas in the second year, exposure may have a more limited impact.16 VARIETY PROMOTES ACCEPTANCE

Reactions towards new foods can differ according to food groups.17 In one study, mothers were asked to report their infant’s reactions to new foods at the beginning of complementary feeding. They found that fruits and vegetables, which are often the first foods offered to infants, are less accepted than other food groups.18 However, a more recent investigation demonstrated that early exposure to a rotation of vegetable flavours first added to milk and then to cereals increased the intake and liking of these vegetables. Infants assigned to the intervention ate more of the target vegetables in the laboratory and at home than those assigned to the control group.19 This reinforces the findings that variety can also promote infants’ acceptance of new foods.20 COMMENCEMENT OF COMPLEMENTARY FEEDING AND ITS ROLE IN THE DEVELOPMENT OF TASTE PREFERENCES

Timing of exposure to new foods has also been demonstrated to influence infants’ food acceptance. Complementary feeding is recommended to start at around six months of age,21 although some suggest that it is www.NHDmag.com May 2018 - Issue 134



Food neophobia is defined as ‘an unwillingness to eat novel foods’. It is thought to be an adaptive behaviour, to ensure that children eat foods that are familiar and safe during a period when they are being exposed to a large number of new foods. appropriate to start between four and six months of age, when the infant can demonstrate signs that they are ready for solid food, e.g. sitting up unaided, co-ordinating hand and mouth movements.22-24 For more on complementary feeding, please turn to Maeve Hanan’s article on pages 29-31. Potential issues with introducing solid foods after six months, including evidence suggesting that it might increase the risk of developing certain allergies25 and the development of low iron levels,26 is that part of the ‘window of opportunity’ for obtaining a broad range of food preferences may be missed.27 Using a parent-rated scale of four attributes of the infant’s reaction to the food , it has been shown that the earlier the introduction to vegetables during complementary feeding, the greater the acceptance of novel vegetables.28 It is more difficult to increase children’s acceptance of fruits and vegetables after toddlerhood.29,30 It may be acceptable then, in terms of food acceptance, that the four- to sixmonth period can be an appropriate time to introduce ‘tastes’ of solid food. However, it does have to come with strict criteria: a focus on ‘food familiarisation’ rather than nutrition per se, ‘tiny 34

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tastes’ of foods that are appropriate in type and texture suitable for the developmental age of the infant and in amounts that do not compromise breastfeeding. EARLY YEARS’ FOOD PREFERENCES AFFECTING ACROSS-THE-LIFE-COURSE

It has been well documented, albeit mostly observational, that food preferences developed during the early years can ‘track’ into later childhood. Most of the evidence is derived from prospective cohort studies, including data from large cohorts such as the Avon Longitudinal Study of Parents and Children (ALSPAC)31,32 and the Infant Feeding Practices Study II,33 as well as smaller cohorts.34-36 There is also evidence indicating that early familiarisation can be associated with later acceptance. For example, protein hydrolysate formulas, which have a particularly bitter taste, are associated with later acceptance for bitter foods, including vegetables and fruit.37 Experimental data has also demonstrated a link between introducing a variety of vegetables at the onset of complementary feeding38 with acceptance of these foods in early life and over the longer term, up to six years of age.39

Salt taste is unique, in that a preference for salt taste develops after four months of age and continues into childhood.40 The two strongest predictors of young children’s food preferences are familiarity and sweetness.41 FOOD NEOPHOBIA

Food neophobia is defined as ‘an unwillingness to eat novel foods’. It is thought to be an adaptive behaviour, to ensure that children eat foods that are familiar and safe during a period when they are being exposed to a large number of new foods.42,45 Young children, especially aged two to five years old, exhibit heightened levels of food neophobia during this time of rapid dietary change. Rozin et al43,44 have demonstrated that distaste, defined as the ‘dislike of the sensory characteristics of a food’, appears to be the strongest driver of neophobia in young children, followed by potential harm or sickness. As mentioned above, the two strongest predictors of young children’s food preferences are familiarity and sweetness. These innate tendencies, along with a predisposition to learn from early experiences through associative learning46,47 and repeated exposure,48-50 allow the child to learn to accept and prefer foods that are available within their environment. Experimental studies have demonstrated that neophobic tendencies can be reduced and preferences increased on exposing infants and young children to novel foods repeatedly,48,49,51,52 suggesting that young children need to be exposed to a novel food six to 15 times before an increase in intake and preferences can be seen.48,49,51,52 Furthermore, exposure needs to

include tasting the food, as merely seeing49 or learning52 about a novel food on repeated occasions does not promote their preferences for that food. A recent intervention study found that repeatedly exposing children to a novel food with positive social environment factors was especially effective in increasing their willingness to try and have preference for the novel food, as well as other novel foods not targeted by the intervention.53 These findings suggest the importance of the act of repeatedly exposing children to new foods and the context within which this occurs. EUROPEAN APPROACHES TO COMPLEMENTARY FEEDING

This idea of early ‘food familiarisation’ aligns with French, Swedish and Dutch approaches to early complementary feeding, providing the infants with plenty of opportunity to experience different foods, with an emphasis on ‘tiny tastes’ and ‘educating the palate’.54-56 CONCLUSION

It is of paramount importance that, during the early years, we can acquire the preference for foods that promote a varied and healthy diet. The complementary feeding period is a ‘window of opportunity’, familiarising infants with a wide variety of foods. At this stage, their openness to try new foods is at its peak, making early intervention the most promising way of improving children’s diets. Familiar foods are likely to become preferred foods and it has been demonstrated that these acquired preferences can track into later childhood and into adulthood, thus affecting food choices in later life.

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Anne Holdoway Registered Dietitian With a 30-year career spanning NHS dietetics, private practice, industry and research, Anne currently combines freelance work with private practice. She is dietetic lead for Dorothy House Hospice where she is undertaking qualitative research in diet in palliative care as part of her Doctorate.

REFERENCES For full article references please CLICK HERE . . .

MANAGING ADULT MALNUTRITION IN THE COMMUNITY: NEW UPDATED MATERIALS LAUNCHED It is estimated that more than three million people in the UK are at risk of disease-related malnutrition at any one time, the vast majority (93%) living in the community.1 With an ageing population2 and increasing numbers of individuals with multimorbidities (factors that increase the risk of malnutrition), then the prevalence of malnutrition is likely to rise unless we dramatically improve the screening, treatment and prevention of this debilitating condition. The consequences of disease-related malnutrition and failing to prevent or treat it as early as possible undoubtedly continues to place a considerable financial burden on health and social care budgets.3 The recent APPG report focusing on ‘Hidden Hunger and Malnutrition in the Elderly’4 called for action to proactively screen patients in all levels of care in order to address the growing burden that malnutrition is placing on the NHS and social care. On an individual basis, a malnourished patient will cost the NHS in the region of £5,000 more per annum to manage than a nourished individual. Investing time and resources in screening, assessment and delivering timely and appropriate nutritional care is crucial if we are to reduce not only the financial burden to health and social care, but also improve health outcomes for patients and their carers. Whilst considerable work, in many cases led by dietitians, has been carried out in recent years to raise awareness of the issue of malnutrition in the community and put in place pathways of care, education and training to tackle malnutrition, there undoubtedly remains much to be done in targeting training and resources to increase the awareness

amongst ‘at risk’ groups, which include those with chronic disease such as cancer, individuals suffering from dementia, patients with an acute illness, the frail elderly and those recently discharged from hospital.1,5 In 2012, to facilitate measures to address the issue of malnutrition in the community, an expert multidisciplinary panel came together to produce a practical guide to assist community healthcare professionals in identifying and managing malnutrition. An updated version of the guide is now available. The panel has involved and liaised closely with stakeholders and representatives from key organisations involved in the care of patients at risk of developing malnutrition in the community to ensure the guide documents are relevant to healthcare professionals working in all care settings in the community. Unique to the update is the involvement of patient representatives who assisted in developing the content of the patient and carer resources produced. As before, the guide Managing Adult Malnutrition in the Community has been developed by a multi-professional team of expert practitioners and is endorsed by key organisations including the Royal College of General Practitioners (RCGP), the Royal College of Nursing (RCN) and the British Dietetic Association (BDA).6 The guide is based on clinical experience and evidence alongside accepted best practice and includes an updated pathway to assist in the appropriate use of oral nutritional supplements (ONS). Healthcare professionals inheriting patients who have had a recent stay in hospital, supporting www.NHDmag.com May 2018 - Issue 134


COMMUNITY individuals with chronic conditions and those caring for the elderly should find it particularly useful. The updated guide has also received the following NICE endorsement statement: Managing Adult Malnutrition in the Community: ‘This booklet supports the implementation of recommendations in the NICE guideline on nutrition support for adults (www.nice.org. uk/guidance/cg32). It also supports statements 1, 2 and 5 in the NICE quality standard for nutrition support in adults (www.nice.org.uk/ guidance/qs24).’ National Institute for Health and Care Excellence, December 2017. The guide includes: • an overview of malnutrition including its clinical consequences, cost implications, details on the prevalence across healthcare settings and information on key patient groups at risk; • information on the identification and management of malnutrition according to risk category using ‘MUST’; • guidance on optimising nutritional intake, including dietary advice and the appropriate use of ONS; • a practical pathway on the appropriate use of ONS in the management of malnutrition. A number of updated supporting documents are also available: • Three leaflets for patients and carers (copies can be downloaded from www. malnutritionpathway.co.uk/leaflets-patients -and-carers). - Nutrition Drinks (known as Oral Nutritional Supplements) - red leaflet for those at high risk of malnutrition. This leaflet outlines to patients why they have been prescribed ONS and offers them general advice on getting the most from their supplements. - Your Guide to Making the Most of Your Food - yellow leaflet for those at medium risk of malnutrition and for use with those at high risk along with the red leaflet. This leaflet provides some simple ideas for patients on how they can get the most nutrition from the food they are eating. 38

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Eating Well - green leaflet for those at low risk of malnutrition. This leaflet gives patients advice on how to eat well and keep as healthy as possible. • Managing Malnutrition with Oral Nutritional Supplements (ONS) - advice for healthcare professionals - an A4 two-sided printable leaflet which gives healthcare professionals an overview of malnutrition and provides a quick guide to the different types of ONS available and patient suitability as well as styles, flavours and formats available. Download a copy from www.malnutritionpathway.co.uk/ health-resources The panel are seeking professionals to review the materials, adopt into practice and identify ways to integrate nutritional screening and nutritional care into pathways of care, particularly when dealing with those at high risk, such as the frail elderly, those with chronic disease, progressive neurological disease, debility, undergoing rehabilitation or those with social issues. The cost of not treating patients in relation to overall quality of life and the financial burden of their greater healthcare needs that result because of malnutrition, continue to far outweigh the cost of identifying and treating them. Dietitians in particular can play a pivotal role in ensuring the best nutritional care is provided in the community for vulnerable groups and should work closely with other community healthcare professionals to ensure nutritional screening and care pathways are in place, particularly in GP surgeries, residential and care homes. The updated version of the Managing Adult Malnutrition in the Community guide and supporting materials are available for free to healthcare professionals, patients and carers via the www.malnutritionpathway.co.uk website. -


NUTRITION IN A GROWING AGEING POPULATION Aliya Porter Registered Nutritionist Aliya is a regional rep for the Association for Nutrition (AfN) on a voluntary basis. The NorthWest Regional Network consists of 149 UKVRN Registrants working across a variety of fields in nutrition. Aliya also runs her own freelance practice www.porternutrition. co.uk www.association fornutrition.org

On 3rd February this year, the Association for Nutrition Regional Network (North West region) held their study day to look at the needs of older adults and the current knowledge base we have in this age group. Over 70 Registered Nutritionists (RNutr) and Registered Associate Nutritionists (ANutr) spent a workshop session discussing how we as a profession need to adapt. This article shares some of the discussions. Over the next 20 years (2015 to 2035) The terminology we use is also the number of people in the UK aged important. ‘Older adults’ is the over 65 is projected to grow by 4.75 recognised term, but this group has very million (an increase of 50%) (ONS, diverse needs. We require compassionate 2016). As the population of older terminology which is clear and nutrition adults increases in the UK, nutrition students require support in the professionals will have to adapt to development of skills around cultural their requirements and the needs of sensitivity and positivity around older the ageing population as a whole. adults also. As a profession, we should all educate ourselves about the needs of THE IMPACT ON RESEARCH older adults, from protein and vitamin Looking at the current research base, there is a dearth of D requirements, to research into the the challenges of There is a need for nutritional status and dysphagia, memory the requirements of loss and difficulty further research into the the over 85s. carrying shopping. The University of We will all come nutritional needs of older Newcastle, amongst across older adults others, is conducting in our day-to-day adults more broadly, research in this area lives, even if we don’t at the work directly with prevention of ill health and and presented study day.1 SACN them, whether it is a recognise the need relative, or friend of treatment too. for specific RNIs the carer of one of our to be developed, patients. Therefore, knowledge in this area will always be particularly for the over 85 age group. It is essential that we champion research advantageous. The challenges of meeting increased in this area. There is a need for further protein requirements, taste changes, or research into the nutritional needs of the need for finger foods in dementia older adults more broadly, prevention patients who have an increased of ill health and treatment too. likelihood to wander during meals, Within the research conducted, give us increased challenges as we the black and minority ethnic (BME) seek to help meet the needs of older populations should not be forgotten as adults. We need to be prepared for their needs and the necessary response questions and prompt discussion when to their requirements may well be appropriate. different. www.NHDmag.com May 2018 - Issue 134



Support for care home chefs to make meals which meet their residents’ needs, but are also acceptable to the eye and the palate, is crucial. Research is also needed to establish whether the findings of studies into the nutritional status and needs of the current 85+ age group will indeed be the same for those who will reach that age in 20 or 30 years’ time. It is important that this modelling is done in order to inform the prevention work necessary now for those population groups. Researchers also need to consider how older adults will be able to access their research findings.

health needs to focus resources on informing older adults about their different nutritional needs, as well as general health promotion. Change in circumstances, should be considered when promoting health, for example, caring for a relative or the death of a spouse. As in all health promotion, it is essential to ask the population what they want so that messages have the greatest impact. We need to think smarter as resources are so tight.



We all know it, but an ageing population brings more challenges to the NHS to meet the medical needs of older adults with proportionately fewer people paying into the NHS. We must therefore focus on prevention. Prevention of ill health, should start at school level (with education, physical activity, cooking and school meal provision), but should also continue in the workforce so that retired people go into retirement healthier. There is an opportunity for employers to invest in their workforce to reduce days off sick and potentially to get more working years out of their experienced staff. Alongside this, public 40

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All nutrition professionals need to be working in collaboration with researchers and other professionals to ensure that the evidence base is not only sound, but also disseminated. There is an opportunity to raise the profile of nutrition. There needs to be cross-functional working to gain better understanding of needs. Collaborations between nutrition professionals and other healthcare professionals, including nurses, GPs, OTs and physios, are essential in order to ensure clear consistent messaging. Nutrition needs to be a major part of falls prevention and the management of medical conditions, such as hypertension and high

. . . industry could consider creating a range of ready meals which are nutritionally tailored to the needs of the older adult . . . cholesterol, in line with NICE guidance. Nutrition should be an integral part of the operations of all care homes and care providers, in both training of staff and delivery models. Support for care home chefs to make meals which meet their residents’ needs, but are also acceptable to the eye and the palate, is crucial. The work of The Soil Association’s Better Care programme for Food for Life2 was highlighted at the study day. Although work with care homes is essential, we must not forget that over 70% of over 85s live in their own homes, so, in order to reach this group, collaboration with leisure providers, hairdressers, barbers, clubs and workplaces is essential for consistent messaging and greater support around nutrition. In order to assist partnership working, clear nutritional advice for older adults is required in an acceptable format. THE ROLE OF THE FOOD INDUSTRY

The food industry is essential for meeting the nutritional needs of older adults. Nutrition professionals working within the food industry adhere to a commonly held ethical framework, to demonstrate that they advise in the public interest and are not unduly influenced by their employer’s profit motive. For UKVRN Registered Nutritionists, this ethical framework is the Association for Nutrition’s Standards of Ethics, Conduct and Performance, which apply to all professionals whether employed in the public, private or commercial sectors. With a growing ageing population, industry needs to respond too in order to meet the demands of its customer base. Increased protein requirements with protein as part of each meal gives the opportunity to develop products which would meet this need, but are also nutritionally balanced, low in sugar and salt.

With the increased demand for convenience meals (including by older adults looked after in their own homes with very short carer visits), industry could consider creating a range of ready meals which are nutritionally tailored to the needs of the older adult in terms of portion size and nutritional content. Such ranges could also include finger foods which are nutritionally balanced and which tailor for the older adult who is not able to sit down and eat a meal with a knife and fork. Creating such a range is a challenge because the needs of older adults are so very different, but a variety of different options within a range could meet those needs. Packaging is important with larger fonts and easier-to-open packaging - perhaps an increased challenge as we move away from plastic packaging which is often, although not always of course, easier to open. Industry could also think about issues of accessibility. Older adults with limited mobility, or limited ability to carry shopping, may have to rely on smaller shops for their nutritional needs. Providing a good range of food which is accessible is essential. We need to promote the use of Dial a Ride and Age UK services for shopping too (so we need to know about our local services). With the increase in online grocery shopping, older adults can get food delivered, but certain companies now charge extra if your total is less than £40. Perhaps this could be waived, or a lower minimum order be required for the over 65s. There was much to discuss at the study day and there is plenty of food for thought here, whichever part of the profession you fit into. We all need to do our part. Perhaps it is time for a national campaign on Ageing Well.

References 1 1 Antoneta Granic Nuno Mendonça, Tom R Hill, Carol Jagger, Emma J Stevenson, John C Mathers and Avan A Sayer (2018). Nutrition in the Very Old. www.mdpi.com/2072-6643/10/3/269/pdf 2 www.soilassociation.org/our-work-in-scotland/scotland-news/2017/good-food-in-care-homes/

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WORKING WITH THE MEDIA Priya Tew Freelance Dietitian and Specialist in Eating Disorders Priya has a wealth of media experience working with magazines, the national press, radio stations and with on-camera roles. Recent television work includes Channel 5’s Diet Secrets, BBC1’s Food truth or scare and Eat well for less.


Media work can be something that quite frankly scares people. It puts you in the limelight and you do not have control over how the end result will be. However, it is vital area for dietitians and registered nutritionists to be doing this work. The more of us who get involved in shouting out the right nutrition messages, the more we counteract the negative diet culture that is all around. I have learnt a lot from my experiences with working in all areas of media, including television and offer you the following five main tips for all media work, whether you have been simply asked to comment on a topic or have a full interview: 1 Provide information which is evidence-based and ethical. Even if you are an expert in the field you are being interviewed about, it is still a good idea to refresh your mind on the latest research and to read anything in the media that the journalist may be talking to you about. PEN can be a great place to go for a quick search. 2 It may only be a quick 10-minute phone call, but your preparation is key. Think of your key points to get across and plan out a couple of snappy lines that could be used. 3 Remember that you are the expert. You can direct the interview. If you know that there is an area that should be focused on, then bring it up. Most journalists/media crew I have worked with have been lovely and just want to get a good result, so they are open to your ideas too. 4 Be punchy, bold and fun. Most journalists already know the basic nutrition messages; they come to you for something to add sparkle. 5 Let your personality come through. Adding stories from your own experience can bring things to life.

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Fact check. With the printed press, the pressure is off a little compared to live work and the written word can have more impact, as the words are there in black and white. When speaking to a journalist, it is essential to fact check and revise the guidelines on the topic and any recent research beforehand. Draft out a few main pointers to ensure that the key messages are focused on, then find one key message for the piece and make sure you emphasise it so that it is used! Journalists usually work to tight deadlines, so you may not get to see a copy of the article/interview before it goes to print, but it is worth checking this. Check they know how to address you use when quoting you (which title should they use?). I was recently called a ‘nutrition scientist’ on one TV show! Always ask for the journalist to alert you when the article is used, so that you can read it, but also share it as PR for yourself. Media work can count as CPD! ON CAMERA WORK

With television work, the preparation is even more important, as you can’t stop to suddenly check. Having a draft script and being aware of the main points that the film crew want to cover is essential. The producer will have an idea of where they want the filming to go, but if you have ideas, then add those in. You are the expert and any fresh ideas are usually welcome. On the day, it is best to wear something plain and bright. Too many patterns on clothing can be distracting and clash with the backgrounds. Ignore the camera and work on being natural, relaxed and

approachable, which isn’t easy! Most importantly, be comfortable, hydrated (talking is thirsty work) and be animated. During pre-recorded filming, if you make a mistake, do stop and do it again. It is vital to get the right message over in as few words and as much animation as possible. Think simple scientific messages that people can grab hold of, as if you were chatting to someone in a clinic setting. RADIO WORK

Linking in with your local radio station can be a good way to get exposure and also gain practice delivering those sound bites. I regularly pop into our local BBC radio station for an on-air natter, or do a pre-record over the phone. Often producers are just looking for the right experts to invite in and it’s great if you can offer a quick quote on a hot nutrition story. Radio can be fast paced, there is less set up, no lights and camera and it doesn’t matter what you wear! I’d advise you to have water to hand, a crib sheet and your brain in gear. Think through the topic and work out your final answer. If you can, have a chat beforehand (phone or email) to discuss how you can talk about yourself and your work, along with any top information you want to share. If you do any live phone-in Q&As, then these can put you on the spot and be tricky, so a good thing is to give the caveat of only being able to give generalised nutrition advice and that they see someone in person for more detail. MONEY, MONEY, MONEY?

There isn’t much money in the media world well, if there is, I certainly haven’t found it yet! The day rate for television is lower than most other freelance work and it can be long hours with travel on top. Glamorous it is not. However, if like me, it is work you enjoy, I think it can be rewarding and so important. How many people watch the TV and read magazine and the papers? Having the right messages in the media is vital. Do always ask for a fee and do not take the first amount offered to you, it is worth being a little pushy. There may not be much money available, but as professionals, I think we should always be paid and our expenses should always be covered. GETTING INTO THE FIELD

If you can offer to be a media spokesperson for your profession, then this can be a good way to gain

experience. However, it can also be quite competitive with so many others also responding to the work. Cultivating a relationship with your local media outlets and journalists can be a great way to get media experience and promote your business too. I leave you with some quotes from others who do a lot of media work: “If a journalist or TV researcher approaches you directly, either via email or on social media, my advice is to say YES I CAN HELP, with no hesitation. Once the work is yours you can then decide what to do with it; either take it for yourself, if you have the time AND expertise, OR pass it to a dietitian or registered nutritionist who has more time and/or experience in the area in question. I pass on a lot of the media work that comes my way due to either logistical or time reasons, or perhaps the topic in question isn't my speciality, but in doing this, I also see a lot of media work in my area of speciality (diabesity and bariatrics) being passed to me directly from other dietitians and nutritionists.” Nichola Ludlam-Raine (Twitter: @nicsnutrition)

“Having a voice in the media is a great way to get credible and reliable nutrition information into people’s homes. Make sure what you say is unambiguous and not open to misinterpretation. Stick to short, informative quotes to ensure your key message isn’t lost when it’s edited into an article and if the interview is live, don’t be afraid to extend an answer to a question to get your key points across (be clear about these before it starts). You’re the expert in nutrition, it’s up to the presenter to guide the conversation and keep going!” Jenny Rosborough (Twitter: @HelloHealthyYou)

“1. Stick to your guns no matter how pushy journalists are. You are the expert! 2. Roll with it. Media work is all over the place. Usually last minute, running late and urgent. Be flexible. 3. Have fun! It’s sometimes full on but make it fun and enjoyable” Linia Patel: (Twitter: @LiniaPatel)

“My top tip would be to make sure you get your facts right and read into the topic thoroughly before you send quotes or appear on radio/TV. You never know what's going to come up or what questions may be asked, so an all-round knowledge of the topic is so important. It also means you go in feeling very confident and this shows when you're put on the spot." Charlotte Stirling-Reed (Twitter: @SR_Nutrition) www.NHDmag.com May 2018 - Issue 134



BDA WORK READY! The BDA Work Ready Programme focuses on driving demand for dietitians in workplace settings to undertake interventions which are proven to prevent ill health. The programme has a pool of Work Ready dietitians (who are all BDA member dietitians) across the country who have received specific training to equip them for all workplace settings. Work Ready dietitians have had an outstanding positive impact within many well-known brands. Hydration awareness was, and is, a topic which is raised again and again in communication with the workforce. Work Ready aims for organisations in all settings to have the tools available to emphasise and promote the importance and impact that hydration has on an individual’s health, performance and productivity.

Stay Afloat - Keep Hydrated’, brought to you by BDA Work Ready, is THE evidence-based guide to how organisations can support their workforce to drink adequate fluids and stay hydrated. The new pack, produced by our Work Ready Dietitians gives organisations the tools to enable them to become the hydration champions themselves. For a fee of £295, an employee within an organisation, in any setting, can become the organisation’s Hydration Champion and receive an evidencebased BDA Work Ready Hydration pack, containing: Hydration Manual, 30x Pee Charts and 100x Coasters.

. . . become the organisation’s Hydration Champion and receive an evidence-based BDA Work Ready Hydration pack

To request a BDA Work Ready hydration pack contact: workready@bda.uk.com. Tel: 0121 200 8080, or visit the BDA Work Ready website: www.bdaworkready.co.uk 44

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The BDA offers a CED course ‘Work Ready Programme - advancing skills for independent delivery of the BDA Work Ready Programme’ to equip dietitians with the knowledge and skill set to deliver interventions to all workplace settings. Once accredited, dietitians are invited to join our community of Work Ready dietitians by signing a license agreement. Dietitians are then provided access to the full programme

toolkit, literature review, marketing materials, a trademarked logo and the network of other dietitians; everything needed to get started. To request a BDA Work Ready hydration pack for your organisation, or for more information on how to become a Work Ready dietitian, please get in touch with the team at: workready@bda. uk.com. Tel: 0121 200 8080, or visit the BDA Work Ready website: www.bdaworkready.co.uk.

ARE YOU A BDA MEMBER? Programmes such as BDA Work Ready, help us to grow the impact and influence of our Association and the dietetic profession externally, as our key functions are to represent, promote and protect the professional, educational, public and workplace interests of our 9200+ strong membership. With approximately 80% of all HCPC registered dietitians within BDA membership, there has never been a better time to consider joining your professional body and trade union. If you are keen to share your enthusiasm, knowledge and experience and get involved in programmes such as BDA Work Ready to help advance dietetics and the dietetic profession, then joining the BDA is a great place to start. Membership is open to registered dietitians, dietetic support workers, dietetic students and those with an occupational interest in diet or food, so the BDA invites you to take a look at the benefits of becoming a BDA member at www.bda.uk.com/membership and consider joining at www.bda.uk.com/join.

Be sure to follow us on Twitter and on Facebook.



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A ROTATIONAL BAND 6 DIETITIAN Sophie Johnston Registered Dietitian Salford Royal Foundation Trust Sophie has worked as a Rotational Dietitian in a variety of clinical areas at Salford Royal Hospital since 2015. She has a particular interest in stroke medicine and enjoys service development.

For the past year, I have been working as a Rotational Band 6 Dietitian at Salford Royal Foundation Trust. This has involved working within the gastro, community, neuro and renal teams, with quick transition between each role. This has required me to be adaptable and open to new clinical areas and ways of working, which at times has been challenging. However, I feel that it has given me invaluable experience and ultimately made me a more holistic practitioner. My article here is more of an overview of the work I do rather than 'a day in the life', as all my days have been so variable depending on each rotation. I wanted to write this as an encouragement for others to try rotational working beyond a Band 5 level. OVERVIEW OF ROTATIONS

I initially worked within the surgical gastro team which mainly involved managing the ward lists and seeing patients post upper and lower gastro intestinal surgery. I also had the opportunity to support the team on the medical gastro wards. This broadened my clinical knowledge and enabled me to see more complex patients, with support from experienced team members. I have since come across such patients in the community, for example, those with high output stomas or inflammatory bowel disease, and felt confident in managing multiple co-morbidities. Due to departmental need, I rotated into the community team within a few months. I had to adapt quickly to the different style of working, additional systems used and a new team. I worked with patients with a variety of medical conditions and oral and enteral nutritional needs in their own homes, nursing homes and in clinics. This was a real step out of my comfort zone, as all of my experience since graduating had been acute based. Although I was only in the community team for a few months, I feel that this time supported me in becoming a more holistic practitioner 46

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with the ability to develop realistic, patient-centred care plans for home. I am now much more aware of the community services available to my patients and our responsibility for appropriate prescribing in the NHS, which I incorporate into discharge plans. I also found this experience useful to build professional relationships and support team working across acute to community. I subsequently moved to the neuro team, leading on stroke and providing cross cover with trauma, neurology, neuro-oncology and neurovascular patients. This was an area I had enjoyed working in as a Band 5, so I welcomed the challenge of a step up to a Band 6 level, seeing patients from high dependency up until rehab. During this time, I was able to deliver some staff education sessions, which is something I look forward to building on in the future. Since November, I have been working in the renal team. This has been my longest rotation so far and I have appreciated having the chance to settle into a different clinical area and team. My role involves covering the renal, urology and medical high dependency wards, advanced kidney care clinic, young adult clinic and a satellite dialysis unit in Wigan. I work with patients with varying levels of acute and chronic kidney disease, pre and post commencing dialysis, and those who opt for conservative care. I also contribute to regular advanced kidney care and bone mineral management multidisciplinary team (MDT) meetings.

I have particularly enjoyed the strong focus on optimising quality of life during this rotation, as well as getting to know the patients. I am due to rotate back into the neuro team for 18 months to lead on stroke, in addition to providing cross cover. I am looking forward to coming back to an area of familiarity, and putting my wider skills and knowledge into practice. PROS AND CONS OF ROTATIONS

Overall, I have found my rotational post to be an extremely positive and rewarding experience. However, there have been challenges and I don’t think this way of working would be suited to everyone. There is a lot of time spent feeling out of your comfort zone which can be daunting. Focusing on the opportunities for development, rather than the threats, is key. Working in different areas helps you explore interests and ideas. I have ended up working in areas which I wouldn’t necessarily have chosen to, but I have enjoyed and gained knowledge from them all. I also feel I have been able to identify skills I didn’t know I had, as well as areas to work on. It can be difficult to meet the additional expectations of working at a Band 6 level, as opposed to Band 5, when you are working in an unfamiliar clinical area, and it is always important to be aware of your limitations. For example, you may not have the answers to clinical questions from a more junior team member. I have been lucky enough to work with experienced highly specialist dietitians in each area, who have been generous with their time and support. I have also enjoyed learning from other MDT members, such as by shadowing specialist nurses. It takes time to get acquainted with new procedures and skills, and can leave you feeling like a hindrance in an already over run and busy department. However, looking at the bigger picture, once you are trained up and confident to work autonomously, you are more able to support with cross cover. It is worth the team putting the time in to encourage your learning for the longterm gains for the department. I am by no means an expert or specialist in the areas I have worked in for a few months, and I still have a lot to learn. However, I now feel confident in assisting any team during times of leave or sickness, and this

is something I enjoy and feel contributes to staff morale. In the current NHS climate, I feel it can only be of benefit to have a team of staff who can provide cross cover in different specialities, minimising gaps in service, or need for locums. Adapting to management styles and supervisors has also been a learning curve for me. I have found a positive attitude and an open mind have supported me through these transitions. I feel I have learnt many non-clinical skills from different supervisors, for example, dealing with challenging patients, sharing caseloads and documentation styles. It can also be difficult to set specific objectives for appraisal systems if you don’t know where you will be over the next year. I found setting general long-term goals and agreeing more specific aims with individual supervisors upon rotation overcame this. Finding opportunities to be involved in service development projects and audits can also be a challenge when you are only in one area for a short period of time. I have ensured continuous professional development by attending education sessions and volunteering to take part in other non-clinical work, such as student training, leading on health promotion weeks and charity work. My overall job satisfaction has improved as I now feel like a more well-rounded, holistic and ultimately useful employee. I definitely haven’t experienced boredom (although does anyone in the NHS with current staffing pressures?!) or job ‘burnout’, as I am constantly learning and improving. I don’t know which area I will end up in the long term, so far I am enjoying them all! However, I hope that my rotational experiences have equipped me for exciting opportunities in the future. www.NHDmag.com May 2018 - Issue 134


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Rachel Wilson RD Clinical Science Dietitian, Vitaflo International Ltd After seven years in the NHS, nearly four years within IEM, Rachel joined Vitaflo in January 2017 where she now develops education literature, study events and clinical trials. Written in collaboration with: Charlotte Ellerton RD, Metabolic Dietetic Practitioner, Charles Dent Metabolic Unit, UCLH Charlotte has been working in IEM for nearly nine years. She is particularly interested in pregnancy in IEM and diabetes. Current research areas include maternal PKU and glycogen storage disorders.

REFERENCES For full article references please CLICK HERE . . .

UNPLANNED PREGNANCY IN WOMEN WITH PHENYLKETONURIA (PKU): A DIETETIC EMERGENCY The aim of this article is to provide a summary of PKU and its management during preconception and pregnancy, known as maternal PKU (mPKU), and to offer guidance on how to dietetically manage an individual with PKU who is planning a pregnancy, or is pregnant. Expert dietetic advice is essential for the management of PKU during preconception and pregnancy. High levels of phenylalanine (Phe) levels are teratogenic, and can result in irreversible physical and cognitive damage of the foetus.1,2 From a young age, females with PKU are taught about the need for a strict PKU diet when they are ready to have a baby of their own. As with many people with chronic conditions, individuals with PKU can struggle to attend outpatient clinics, adhere to medical and dietary advice (particularly as teenagers and young adults), and may become lost to follow-up to the specialist metabolic services.3,4 These individuals can present to their general practitioner (GP) when planning, or upon discovery of, a pregnancy. Their GP may refer these individuals to their local dietetic service for specialist dietary advice. If you received such a referral, would you know what to do? WHAT IS PKU?

PKU is an inborn error of Phe metabolism. Without early dietary management, the amino acid Phe and its metabolites accumulate to toxic levels, and cause progressive and irreversible neurological impairment.5 PKU effects approximately one in 10,000 people in the UK. It was the first

metabolic condition to be targeted by newborn screening (NBS) in the UK in the late 1960s. Individuals identified and managed following NBS can expect to grow and develop similarly to their peers, attend mainstream schools, graduate from University, and live independently with jobs and families of their own.5 MANAGEMENT OF PKU

PKU is managed with individualised dietary advice to achieve and maintain target Phe levels and optimal nutritional intakes. Dietary management requires: • a severe restriction of all dietary protein- requiring prescription-only low protein (LP) foods to provide energy, bulk and variety; • a prescription of protein substitutes (PS) - these contain all the other amino acids except Phe and most also contain micronutrients that would otherwise be insufficient in a protein restricted diet, including iron, vitamin B12, calcium, iodine, vitamin D, zinc and DHA. Target Phe levels:5 • 120-360µmol/L from birth to 12 years • 120-600µmol/L from 13 years onwards • 120-360µmol/L during preconception and pregnancy www.NHDmag.com May 2018 - Issue 134


FOCUS ON PKU Figure 1. Dysmorphic features which are related to maternal PKU syndrome

mother’s Phe is uncontrolled during pregnancy, the foetus is exposed to amplified levels. The damage to the foetus resulting from high Phe levels is greater than that caused by undiagnosed and untreated PKU8 and is believed to be comparable to foetal alcohol syndrome.9 Thankfully, maternal PKU syndrome can be avoided with diligent dietary management prior to conception and during pregnancy,5 and many women with PKU who are managed with specialist care have healthy babies.

Until the 1980s, it was usual clinical practice to discontinue the PKU diet during childhood, as it was thought that the brain is sufficiently developed by age eight or 10 and so no longer benefits from supressed Phe levels.6 Some adults with PKU will have relaxed, or discontinued their diet and may no longer attend regular metabolic clinic appointments. It is now considered that Phe levels should be controlled throughout life for best outcomes for individuals with PKU.5 Newly published European guidelines5 recommend that all children and adults with PKU are managed within a specialist metabolic centre, by experienced physicians, dietitians and multidisciplinary teams (MDT). MANAGEMENT OF MATERNAL PKU

Exposure of a foetus to elevated levels of Phe causes physical and cognitive problems, and results in maternal PKU syndrome.1 Symptoms of maternal PKU syndrome include: • microcephaly • intellectual disability • behavioural problems • restricted foetal growth • low birth weight • cognitive heart defects (CHD) • dysmorphic features (which are shown in Figure 1) Due to a positive amino acid gradient across the placenta, the foetus is exposed to a higher Phe concentration than the mother.7 When the

The best outcomes for children born to mothers with PKU are reported when their Phe level is controlled prior to conception, referred to as a ‘planned pregnancy’.10,11 The foetus is fully formed by the 12th week of pregnancy and the heart is formed by the 10th week, so this is an important time to protect the foetus from high Phe levels. Most women will not know they are pregnant until they miss their first or their second period, which relates to the fourth or eighth week of pregnancy. When conception occurs with uncontrolled Phe levels in an ‘unplanned pregnancy’, more favourable birth outcomes are reported if the Phe level is between 120 and 360μmol/L at the earliest possible point, with eight to 10 weeks gestation being a critical time point.2 Dietary restriction should commence immediately in an ‘unplanned pregnancy’ for the best possible outcomes. It is vital that an individual with PKU who finds out she is pregnant makes contact with a specialist metabolic centre as quickly as possible for specialist advice. Dietary management for a PKU pregnancy should be overseen in a specialist metabolic centre experienced in the care of mPKU.5,10. Care is required from a MDT, including a physician, dietitian and, ideally, a psychologist, who are all specialised in the management of adults with inborn errors of metabolism (IEM).5 There are 10 metabolic centres in the UK who provide specialist care for pregnant women with PKU. Their contact details can be found via the National Society for Phenylketonuria (NSPKU) website under ‘emergency contacts’. www.NHDmag.com May 2018 - Issue 134


FOCUS ON PKU CASE STUDY Alice is 26 years old with PKU. She was lost to follow up from the metabolic services at 17 years-of-age after her attendance with the paediatric metabolic services deteriorated. She was referred to the adult metabolic clinic, but never attended her transition appointments. Her adherence to the low protein diet and protein substitute had been declining from the age of 14 and by aged 17 she had stopped taking her protein substitutes completely and discontinued blood monitoring. She had also stopped eating low protein foods and ate small amounts of dairy and grains daily, and meat on a few days a week. Figure 2: Timeline for Alice within the metabolic service HCP contact: Alice attended a GP appointment to inform them that she would like to start a family. She knew she needed to plan with PKU. Weight: 46.2kg Height: 1.62m BMI: 17.2kg/m2

HCP contact: Referral received by dietetic department.

HCP contact: GP surgery received declined referral and placed in GP intray.

HCP contact: Paediatric metabolic dietitian received referral.

HCP contact: UCLH metabolic dietitian called Alice who reported she had recently taken a positive pregnancy test and thought she was 4-6 weeks pregnant.

04 July '16

19 July '16

12 August '16

26 August '16

26 August '16

Action: 1. Referred to local hospital dietetic outpatient service by letter. 2. Arranged for her contraceptive coil to be removed. 3. Advised to start 400µg folic acid daily.

29 July '16

18 August '16

26 August '16

Action: Dietetic service declined referral. Wrote to GP with covering letter explaining reason for inappropriate referral was that they could not provide advice on management of PKU during pregnancy.

Action: GP wrote to local metabolic clinic for advice.

Action: Paediatric metabolic dietitian immediately rang adult metabolic service (UCLH) to inform team of PKU patient needing preconception advice.

Action: Metabolic dietitian provided dietary advice over the phone, booked clinic appointment with metabolic service for following Monday, arranged for emergency deliveries of protein substitute and LP foods with next day delivery.

Despite knowing that she needed to plan her pregnancy in PKU, Alice was not able to rapidly access the correct service to support her with dietary management of mPKU prior to conception. When Alice was contacted by the metabolic service, she was very anxious and concerned about her baby. The mPKU diet was initiated quickly, which meant that her Phe level reached target range by seven weeks gestation minimising the risk of the foetus being affected by maternal PKU syndrome. Although the best possible outcomes for the infant are associated with the mPKU diet being initiated prior to conception, good outcomes are reported when metabolic control is achieved by 10 week’s gestation and maintained throughout pregnancy. Alice was counselled by the metabolic consultant and decided to continue with the pregnancy. Alice was highly motivated and adhered very well to advice and monitoring. Detailed anomaly scans were conducted at 20 weeks gestation and no structural abnormalities were identified for the baby’s heart, and the growth and development were reported to be normal. Her baby boy was born at term. He was tested for PKU on Day 5 through routine neonatal screening and the results were negative. Head circumference was on the 25th centile and there were no immediate signs of maternal PKU syndrome. Alice’s baby will be offered neuropsychological assessments at 18 months, four and eight years of age which are organised by her metabolic unit for outcome monitoring. So far, the outcome for Alice’s infant appears to be good; however, the delays in accessing the correct service and conceiving before metabolic control was achieved was very distressing for Alice, requiring emergency management from the metabolic team and could easily have been prevented. Alice is now enjoying motherhood and attends yearly followup appointments at the metabolic clinic. She hopes to plan for a second pregnancy in the future. What to do if you receive a referral for a patient with PKU who is planning a pregnancy, or who is already pregnant:

• ACT IMMEDIATELY - ideally within an hour of receiving the referral. • Call your nearest metabolic centre at the first opportunity. - Visit the NSPKU website, click the 'Contact' tab, and then choose 'Emergency Contacts'. • Emphasise the referral is for mPKU so that it can be appropriately prioritised by the metabolic unit. • Provide the metabolic unit with as much information as possible. • Advise the original referrer of your actions.


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THE POLITICS OF PKU Suzanne Ford NSPKU Dietitian for Adults Suzanne Ford is a Metabolic Dietitian working with Adults at North Bristol NHS Trust and also for the National Society of Phenylketonuria).

REFERENCES For full article references please CLICK HERE . . .

How does being on a special diet for PKU encourage political activism? If you are a patient needing a special diet such as in Phenylketonuria (PKU), or if you are a dietitian involved in treating PKU patients, you might not envisage political involvement as part of your life. However, for the PKU community, political action has never been greater. NSPKU has recently become politicised in the last 18 months, as this is a way to achieve better resources for the treatment of PKU community in the UK, and ensure better outcomes in the future. PKU affects 1 in 10,000 in the UK and demands that those affected follow an ultra-low protein diet for their whole lives, with the addition of protein substitute taken in divided doses through the day. This treatment impacts on every aspect of a patient’s life school, work, holidays, home life and travel. The consequences of stopping treatment, or of under-treatment, are neurocognitive impairments, depression and anxiety and maternal PKU syndrome if conception and gestation occur in uncontrolled PKU. In January 2017, the European Guidelines for the Diagnosis and Management of PKU1 were published and it was clear that the resources allocated to PKU treatment in UK specialist centres meant that the standards of care needed could not be met. One example of how the European Guidelines for best care in PKU cannot be met in the UK relates to BH4 or Kuvan. This is a drug treatment available for activating the enzyme affected in PKU, in those patients who do have residual enzyme activity. (The drug is less likely to work for those who are missing the enzyme completely.) This drug, BH4,

sapropterin or Kuvan, is available in 24 other countries across Europe, but not in the UK (or Poland, Ireland or Greece). THE NSPKU SIX DEMANDS FOR CHANGE:

• Everyone with PKU (adult or child) will be treated and followed up at a specialist metabolic centre. • All those with PKU, including adults who are off diet or lost to follow up, will have lifelong systematic follow up in specialist metabolic centres. • There will be fair, equitable and transparent commissioning of nondietary treatments for PKU such as BH4 (Kuvan). • All patients will be entitled to BH4 responsiveness testing. • The availability of prescribable foods (a lynchpin of dietary treatment) will improve. • Both psychology support and neurocognitive assessments will be available. WHY DO PEOPLE LIVING WITH PKU WANT CHANGE?

The frustration amongst the PKU community is that dietary treatment is not taken seriously as a therapy which needs resourcing properly to be successful. The resources that are currently used are 19 hours a week2 on average of parental or carers’ time - this is usually maternal time (NSPKU Survey data, currently unpublished) and means that mums can’t work, or certainly can’t work full time, but instead give up their careers to ensure their children’s safe PKU treatment. The strain of this complex dietary management throughout childhood also jeopardizes www.NHDmag.com May 2018 - Issue 134


FOCUS ON PKU parental mental well being - there is evidence that 59% of carers showed clinical levels of psychological distress.3 The resourcing of adult treatment within metabolic centres is such that the support by healthcare professionals for adults and their selfmanagement is also lacking.

In order to place pressure on NHS decision makers to increase their awareness of the PKU community’s plight, NSPKU have approached members’ MPs about forming an APPG which held its inaugural meeting on 7 March 2018.


All Party Parliamentary Groups (APPGs) are groups with cross-party membership of MPs and peers, which meet to discuss, campaign on and promote a certain issue. APPGs have no official status within parliament. However, working with APPGs can be a great way for a particular community to increase the visibility of their issues, connect with organisations working in their field and build relationships with parliamentarians who may be willing to support their common cause. They can also provide the opportunity

The success of dietary treatment is variable as it is so onerous a treatment to successfully implement. The time taken to get prescriptions and do bloodspots may all reduce slightly in adult life, and the taking of a protein substitute three times a day is not as onerous as supervising a child; however, the planning, preparing and production of low protein food is unlikely to be less time-consuming.


CASE EXAMPLES Denise Denise Clayton is 59 and was diagnosed with PKU when she was just over a year old - newborn screening was another 10 years away. Denise was diagnosed at a point when she couldn’t support herself to sit up. However, she improved greatly on a PKU diet (although was extremely reluctant with her protein substitute) and even started walking. Denise came off diet at about aged four, she went back on it briefly, but no further improvements were seen, so it was deemed that, in her father’s words, “We had to accept they had done their best.” Denise has spent a big portion of her life in special schools, with a turning point in 2005, when the Independent Living Fund allowed Denise to have a routine of carers coming to visit her in the home she lives in next to her father. 87 year old Norman Clayton has always championed the best care for his daughter and has been a political activist all of his life. Norman and Denise and their lives with late treated PKU, were already known to Chris Williamson MP when the NSPKU campaign began, and Chris is very happy to be a part of our APPG, highlighting the vulnerability of the late treated group of patients such as Denise. Cait Cait Cotter is a 10-year-old schoolgirl and passionate swimmer who has PKU and was diagnosed via Newborn screening. Cait is on 11 PKU exchanges per day (that is 11g natural protein daily, alongside 520mls of amino acid solution daily, in three divided doses. Cait is currently No 1 in her county for 100m backstroke and ranks in the top 25 in England for many events, including 200m butterfly, which is eight lengths of the pool). She trains five times a week (on one day a week her training starts at 5.30am!). On race days Cait has cold low protein pasta poolside, to keep her refuelled. Cait’s Mum and Dad took her to meet their local MP Vicky Ford in Vicky’s first constituency surgery, to tell her all about PKU and the challenges Cait experiences. Vicky Ford was already a member of the Rare Diseases UK APPG, and was very interested to hear Cait’s story. On 22 March 2018, soon after the formation of the APPG on PKU, Vicky spoke in parliament (at an adjournment debate) about Cait and the frustration she has. During the month Cait experienced a free trial of BH4, sapropterin or Kuvan, Cait’s protein tolerance increased threefold and she could enjoy food without fear or caution. Her energy levels, mood, alertness and focus improved as well. However, once the trial month ended, Cait returned to her life of permanent hunger, and a whole day ruled by limited food and drinking protein substitutes.


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NSPKU has hosted two events so far for MPs to attend . . . we also wanted to set out our concerns and real life stories to significant metabolic stakeholders, such as metabolic teams across the UK. to publicly scrutinise policies or to contribute to reports which may make national headlines. There are many communities who have an APPG taking forward concerns - on 2 May 2017, there were 630 APPGs registered in parliament. HOW DID NSPKU AND THE PKU COMMUNITY GET AN APPG?

People living with PKU have undertaken an awareness raising campaign like never before. Many people have written letters and met MPs in their constituency surgeries. 630 people have completed the biggest survey on life with PKU, that has ever been done so far in the world and some have elaborated by telling their story in depth in print or to the camera. They have helped explain to MPs, just how very challenging the PKU diet therapy is and how hard the disorder can be when it is not well controlled. NSPKU has hosted two events so far for MPs to attend - the first was in June 2017 held inside the House of Commons and needed us to have an MP host at the event. Our second event was in a nearby venue and similarly focused on MPs as the important guests. However, we also wanted to set out our concerns and real life stories to significant metabolic stakeholders, such as metabolic teams across the UK. Liz Twist MP for Blaydon leads the APPG for PKU and it has 28 parliamentarians on it as members. Some of the parliamentarians have promised to have a low protein diet in order to build empathy, understanding and solidarity with their constituents on International PKU Awareness Day (28th June 2018). However, a serious campaign of letter writing, meetings, tabling of questions and so forth, has already begun. WHAT NEXT?

The APPG’s first move was to sponsor an Early Day Motion (no 1044) raising awareness of PKU and calling for a swift conclusion to the appraisal for Kuvan. (An Early Day Motion

is a motion submitted for debate in the House of Commons, the subject of these is not always debated, but they can attract public interest and media coverage and can be used to demonstrate the level of parliamentary support for a specific cause of viewpoint.) The APPG will be active as long as this government is in power, unless the protagonists disband for any reason. The Members of the APPG will be in discussions with the Department of Health, where possible, NHS England, and the respective authorities in Scotland, Wales and Northern Ireland. The intention is to have transparent and fair discussions about drug commissioning in rare diseases, specifically for PKU, both for BH4 and another in the pipeline Pegvaliase - in future years. However, we must explore how better treatment of PKU can be achieved going forwards by realising those changes that NSPKU set out in its initial Call to Action which do not relate to pharmaceutical interventions - that is access to psychology and neuropsychological testing and improved access to prescribed products via primary care. We must achieve systematic gold standard care for all in the UK who have PKU. WHAT CAN DIETITIANS AND CLINICIANS TREATING PKU PATIENTS DO?

Sometimes patients and families feel resentful or antagonised by having a rare disease or metabolic disorder. Patients in the NHS can become frustrated with the treatment on offer, or the way it is delivered or dispensed in the community. Dietitians can encourage patients and their families to write to their MPs and tell them about what living with PKU is like. This feeling of empowerment and telling your story is known to have a beneficial effect on acceptance of a disorder; however, it might help in a wider way as well. Political campaigning is a way to press for improving the resources allocated to PKU, in psychology, diet as well as pharmacological measures. www.NHDmag.com May 2018 - Issue 134




In this article, Sharon shares memories of bringing up children with PKU and reflects on the difficulties and demands through the years.

Sharon is a lecturer of cognitive psychology with published research in The Journal of Brain and Cognition. She is currently conducting research in psychology and treatment adherence in PKU

Recently, I asked both Charlotte and Adam, what their childhood was like growing up with PKU. The consensus was that, having PKU as young children did not mean very much to them in terms of negative experiences; neither of them could recall feeling excluded or different to other children. I am thankful, that whilst I was frantic with the demands of managing life with PKU (creating and baking low protein substitute foods, ordering/ collecting prescriptions, scouring supermarkets, educating those involved in their care such as for parties, sleepovers, tea at a friend’s, holidays and school trips etc), all that passed them by. Thus, as a parent I

Sharon is a parent to two young adults withPhenylketonuria (PKU); her daughter Charlotte is 20 years old and remains on the diet, whilst her son Adam is 18 years old and is off diet (though he makes valiant attempts to get back on diet).

had been successful in my endeavours to reduce the impact that PKU had on their childhood and, therefore, had enabled them to lead a ‘normal’ life. In a study that examined the parental experience of caring for a young child with PKU, Carpenter et al1 identified that striving for a normal life for a child was a coping behaviour often carried out by parents of young children with PKU. Though the parents experienced immense pressure, the result of watching their child engaging in a normal life, enabled the majority of parents to be accepting of the PKU diagnosis within the lives of both themselves and their child.

Adam’s story When Adam began high school, he shied away from letting people know that he had PKU, he felt different and wanted to be able to eat the same foods as his peers. Subsequently, from around the age of 14, his phenylalanine levels were recurrently beyond the target range. This was not as a consequence of eating high protein foods, but because he would over eat chips, chocolate and crisps (foods that are allowed, but have to be restricted). As his teenage years progressed, Adam gained a substantial amount of weight, though the summer before his 16th birthday he did lose nearly three stone on Slimming World (green days). However, we had not consulted his PKU clinic before commencing the weight loss programme and when we did, the clinic considered that our approach was incorrect, for example, we should not have been giving him the calorific supplements. The clinic told Adam that as he would be going to adult clinic and compliance was an issue for him, that to aid his weight loss he could make the decision to come off the PKU diet. As yet, there is no approved prevention, or treatment intervention for overweight and obese people with PKU.2

REFERENCES For full article references please CLICK HERE . . .


A month after coming completely off the PKU diet, Adam began to gain weight; he was unable to be selective amongst such a wide range of foods that he was now ‘allowed’. Less than 10 months after stopping the PKU diet, Adam had gained three stone. Within a year of being off diet, whilst on a family holiday to Spain, Adam became feared for his safety; he believed he was going to be robbed, kidnapped or blown up. His paranoia

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was so extreme that whilst in Spain an urgent referral to a mental health unit was made and he was assessed as having psychosis and placed on anti-psychotic medication. We also started Adam back on the PKU diet and supplements, though as he became more mentally settled he desisted from the diet. Two years later, Adam’s psychiatrist and mental health team are doubting the initial diagnosis of psychosis as his problems do not fully fit, though there is no doubt that he had extreme anxiety, agoraphobia and social withdrawal. Indeed, anxiety-related conditions are a frequently reported psychiatric complication in adults that cease to follow the PKU diet.3 We have had great intervention from our local mental health team, be it from a psychiatrist, family therapy, cognitive behavioural therapy and an individual support worker. But in terms of support from the PKU clinic, there has been little help, as these services are not integrated within routine metabolic care. Adam is not alone in his story; diminishing adherence with age is sadly a global issue for many individuals with PKU, from around the ages of 16, phenylalanine control and concentrations often ameliorate for patients.4

Charlotte’s story As Charlotte and Adam entered their adolescence years, their thoughts about life with PKU became disparate. Charlotte continued to embrace life whilst living on the PKU diet, never having a problem in telling people that she followed a medically prescribed low protein diet and asking for alternative food if unsuitable choices were presented. Charlotte’s one gripe with the diet was (and still is) the 345 calories contained in her three prescribed supplements. In her early teenage years, weight gain was an issue; no doubt it was a consequence of being too liberal with the protein-free prescription foods. However, with exercise and a calorie-controlled diet, Charlotte successfully lost just over four stone whilst simultaneously controlling her phenylalanine levels within the required range. Currently, Charlotte works as a learning support assistant in further education, she has a positive attitude towards life and living on the PKU diet, although at weekends she would like a little more protein than her daily six exchanges allows. UNDERSTANDING THE INDIVIDUAL FACTORS ASSOCIATED WITH DIETARY ADHERENCE

Whilst there is recognition of the hardship of dietary control, there is a lack of studies examining interventions to aid treatment compliance.5 However, there is not a lack of studies that seek to understand the various individual factors that contribute to an individual managing the PKU diet. In order to understand whether knowledge about PKU is a contributory factor to dietary adherence, Witalis et al6 assessed knowledge and attitudes towards the PKU dietary regime in both patients and their parents. It was concluded that PKU dietary knowledge did not negatively impact upon adherence. However, it was found that other influences, such as limiting a child’s independent food choices, growing helplessness in dietary adherence and embarrassment in following the

PKU diet did add to building a negative attitude towards the diet. It was, therefore, concluded that families affected by PKU would benefit from consistent long-term family and individual therapy that would help ‘counteract the effects of learned helplessness’. HELPLESSNESS AND LOCUS OF CONTROL

Individuals with a high external locus of control believe that they are helpless in controlling what happens to them, that promoting change is beyond their power as it is guided by fate, luck or other external circumstances. This is contrary to the belief held by people with a high internal locus of control; individuals possessing a high internal locus of control are confident in their personal abilities to influence change in themselves and their environment. Subsequently, individuals with an internal locus of control are less likely to submit to the www.NHDmag.com May 2018 - Issue 134


FOCUS ON PKU Figure 1: Locus of control; the extent to which people believe they have control over their own lives

However, in recent years, resilience has come to be understood as being a dynamic process that involves the interaction of personal attributes with environmental circumstances. Consequently, at differing periods throughout an individual’s life, resilience can increase or decrease depending on a person’s ability to deal with the stress of a given situation.12 MENTAL TOUGHNESS

pressures to conform or obey, in comparison to individuals with an external locus of control.7 In a study that examined the association between metabolic control and child attributional style, Antshel et al8 found that locus of control ratings correlated significantly with blood phenylalanine levels; higher blood phenylalanine was associated with a higher external locus of control, suggesting that those children felt powerless over their condition and thus treatment compliance was reduced. Furthermore, it was suggested that children with a high inner locus of control took on more personal responsibility for their treatment and demonstrated better adherence, which thus resulted in better metabolic control.8 PSYCHOLOGICAL RESILIENCE

Associated with the presence of an internal locus of control is the concept of psychological resilience. Resilient individuals possess a strong belief in their own ability to control what happens to them.9 Though there is a lack of consensus as to a definitive definition, the term resilience is useful in understanding the positive manner people adopt when managing stressful life events.10 In the past, a person overcoming an adverse life event was said to possess a hardy personality type.11 Thus, resilience viewed as a personality trait was seen as being innate and fixed. 58

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A personality construct related to favourable stress management is mental toughness (MT). Originating from sports psychology, it predicts outcomes in sports. The attributes thought to be involved in being mentally tough are: resilience, confidence, commitment, self-belief, concentration and the ability to thrive under pressure. Individuals who are deemed to be mentally tough have a high sense of self-belief with a strong faith that they can shape their own destiny.13 Indeed, if I look back at the personalities displayed in my children as they began adolescence: it could be said that Charlotte demonstrated many of the attributes associated with MT. This was evidenced by her ability to maintain focus and concentrate on the end goal (i.e. her ability to lose weight and maintain it); she also thrived in opportunities where she was part of a team, for instance, playing at county level as a Crown Green bowler required her to be a confident and committed team member. Both my children are gentle, warm and considerate people and though Adam is lacking in the traits associated with MT, he does not look negatively upon Charlotte’s success with the PKU diet. CONCLUSION

From a parental perspective, I wonder whether the personality measures that predict success in sports (resilience, confidence, commitment, self-belief, concentration and the ability to thrive under pressure) reflect those that are needed in order to successfully manage the PKU diet. Living each day with the dietary regime of PKU is hard work; whether you are a person on or off diet, or whether you are a carer of someone who has PKU. For everyone involved, daily PKU is work in progress.


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#TRUSTADIETITIAN Sarah Howe Specialist Dietitian Sarah is an experienced NHS Dietitian specialising in the fascinating area of Inherited Metabolic Disorders in adults. In her spare time she enjoys helping her work colleague and good friend, Louise Robertson run her blog 'Dietitian's Life'. She also loves fitness and spending time with her two girls. www. dietitianslife.com


Social media use amongst dietitians and healthcare professionals, in general, is growing. It’s a fabulous place to share knowledge, network and meet new people. For me, this is social media at its best! Although recently I’ve not been a very happy dietitian whilst scrolling through social media, especially twitter. This is because I have read a lot of vary so much too! Education levels, negative comments about dietitians; social situation, ability and also drive and about what they recommend and about motivation to change their diet and ways. what they are writing about. Comments In an ideal world, we would love can be as extreme as calling us liars, everyone to eat a fresh, non-processed not following evidence and almost diet, all food cooked from scratch. But we endangering the general population are realistic and understand that this will not happen for everyone. We realise that a with our advice. If you follow social media regularly, frail elderly person may need to use a ready meal to ensure they you may have seen diet are eating properly. extremists who think Dietitians are also trained We realise that for that their diet and some choosing a lower way of life should be to work holistically. calorie meal from a followed by everyone We understand that fast food restaurant is on twitter and there people vary so much too! better than going for is a very strong, “if the supersize option. you’re not with us, Education levels, social We realise that for a you’re without us!” situation, ability and also homeless person any message. What is drive and motivation to food is some nutrition. frustrating is that they change their diet and ways. We are not dangerous seem so misinformed for advising people to about what dietitians do and indeed what the vast group of have these sorts of foods. We are realistic. We are helping our patients to make small people we work with does too. Dietitians work in a huge range of changes that will help in the long run. For specialities; we are trained to do so. One some, switching from sugary fizzy drinks diet certainly does not fit all. I would not to diet versions can result in large, positive recommend a high protein diet for my diet changes. It is one step at a time. urea cycle disorder patients, as would Our education, training and be at risk of endangering their lives. experience working with our patient This is the same way a renal dietitian groups allow us to tailor our dietary would not recommend a very high diet advice to each individual. There really in fruit and vegetables for one of their is no one diet that will suit all. We know renal patients on a low potassium diet. theoretically what diet people should be There is so much variability and to following but we are realistic enough to expect one size to fit all is potentially know large dietary changes take time and motivation. very dangerous. Dietitians are also trained to work We don’t say #trustadietitian for holistically. We understand that people nothing you know, now do we!

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Network Health Digest (NHD) - May 2018  

The Magazine for Dietitians, Nutritionists and Healthcare Professionals Issue 134

Network Health Digest (NHD) - May 2018  

The Magazine for Dietitians, Nutritionists and Healthcare Professionals Issue 134


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