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N at e in nl m s o .co ue g ss a li m ta D gi H d i .N D w H ww

The Magazine for Dietitians, Nutritionists and Healthcare Professionals


June/July 2019: Issue 145





The importance of supporting the gut microbiota for positive health outcomes in preterm infants Infants who are born prematurely often face multiple health concerns, including day-to-day feed tolerance, poor gut barrier function and increased risk of infection.1–3 The gut microbiota in these infants is considered to be particularly important for protection against harmful microorganisms and for the maturation of the immune system.4 Increasing evidence suggests that promoting a healthy microbiota is key to ensuring the best possible outcomes in preterm infants.2

The benefits of breast milk on the microbiota Breast milk is universally recognised and associated with the best health outcomes in both preterm and term infants by providing a unique combination of nutrients and immune-protective factors.5 A key benefit of breast milk is the promotion of a healthy gut microbiota, which is in part attributed to the presence of prebiotic oligosaccharides (OS) supporting gut intestinal flora development (figure 1).4 Breast eastffed in infant

100 90






Bifidobac ifidobactteria E. coli Bactteroides Bac

60 50

Bifidobac ifidobactteria E. coli Bactteroides Bac

60 50








Adapted from: Harmsen, et al. 2000

Formulaormula-ffed in infant (excl. prebiotics)

















Figure 1 – The microbiota of breastfed infants is dominated by beneficial bifidobacteria (up to 90%) and has lower levels of harmful bacteria (such as E. coli and Bacteroides) compared to infants fed a formula without prebiotics during the first 20 days of life.4

Prebiotic oligosaccharides positively influence the gut microbiota If breast milk is not available or not sufficiently available for a preterm infant, a specific preterm formula is recommended.6 Several clinical studies have proven that a formula containing prebiotic OS (compared to a formula without prebiotic OS) helps to support the preterm gut microbiota in a number of different ways: Increasing the number of bifidobacteria in the gut (Figure 2)7 Promoting stool frequency patterns and consistency similar to breast milk fed infants7,8 Reducing numbers of infection-causing bacteria in the gut9 Potentially improving enteral tolerance in very preterm infants8,10 Adapted from: Boehm, et al. 2002 13


log (CFU/g wet faeces)

12 11 10

Prebiotic OS formula (n=15)

Breastfed reference range


Non prebiotic containing formula (n=15)

8 7

Figure 2 – Preterm infants receiving a formula with prebiotic OS for 28 days had significantly higher levels of bifidobacteria in the gut, compared to the group receiving a formula without prebiotic OS (p=0.0008).7

6 5 0







Days of feeding period

Prebiotic OS formula (n=15)

Nutriprem 1 and nutriprem 2 are the only preterm that prebiotic OS, Nonformulas prebiotic containing formula contain (n=15) proven to increase the beneficial bacteria in the gut and to support gut health. Find out more: Healthcare Professional Helpline 0800 996 1234 eln.nutricia.co.uk @nutriciaELNUK Important notice: Breastmilk is best for babies. Nutriprem human milk fortifier, nutriprem protein supplement, hydrolysed nutriprem, nutriprem 1 and 2 are foods for special medical purposes for the dietary management of preterm and low birthweight infants. They should only be used under medical supervision, after full consideration of the feeding options available, including breastfeeding. Hydrolysed nutriprem, nutriprem 1 and 2 are suitable for use as the sole source of nutrition for preterm and low birthweight infants. References: 1. Calkins KL, et al. Clin Perinatol 2014;41(2):331–345. 2. Groer MW, et al. Microbiome 2014;2:(38):1-8. 3. Neu J. World Rev Nutr Diet 2014;110:253–263. 4. Harmsen HJM et al. J Pediatr Gastroenterol Nutr 2000;30(1):61–7. 5. Gartner LM, et al. Pediatrics 2005;115(2):496–506. 6. Agostoni C, et al. J Pediatr Gastroenterol Nutr 2010;50(1):85–91. 7. Boehm GM, et al. Arch Dis Child Fetal Neonatal Ed 2002;86(3):F178–F181. 8. Mihatsch WA, et al. Acta Paediatrica 2006;95(7):843–848. 9. Knol JP, et al. J Pedaitr Gastroentreol Nutr 2005;40(1):36–42. 10. Modi N, et al. Pediatr Res 2010;68(5):440-5.

18-145. August 2018.


WELCOME We live in a technology-laced environment and we (mostly) enjoy the benefits this brings; such as being able to talk to friends and family at anytime, anywhere, or being able to order supermarket shopping online and have it delivered quickly. There’s also the benefit of being able to work remotely, whilst still being linked closely to colleagues in the office. We can monitor various aspects of our health and wellbeing via our wrist device or mobile phone too. Nevertheless, there are times when technology simply frustrates us all to distraction. I hate my printer for example. I really do. It’s meant to print wirelessly from anywhere in the house, but more often than not, it decides to have a little game with me and not print anything out at all. I’m sure you’re all familiar with well-timed glitches that occur with technological devices at home and at work! Despite the pros and cons of using technology in our personal and professional lives, it seems that dietitians and nutritionists are getting on board with its uses in our profession. Ruth Barclay-Paterson, Diabetes Dietitian, reports on ‘telehealth’ in NHS Ayrshire and Arran, which provides successful dietetic management for patients with diabetes. Priya Tew discusses whether it’s time we should be embracing new software, apps and online consultations. She has compiled a range of software that she and other nutrition professionals have found useful in different situations. A wide range of topics feature in this double issue of NHD (which, as usual, will be on our website to view digitally – that’s technology for you!), including on potential preventive dietary approaches to dementia by Gill Hooper, who highlights that an estimated one million people in the UK

will have dementia by 2025 and this will Emma Coates Editor increase to two million by 2050. Moving from elderly care to paediatrics, Olivia Emma has been a dietitian Chaffey focuses on cow’s milk protein registered for 12 years, with allergy, talking us though this complex experience of adult dietary issue and how best to manage and paediatric dietetics. it. And gastroenterology? Well, Jess English has it covered, as she shares her insights into the current and potential treatment approaches of IBS, including genetic links in its aetiology. IBS sufferers may well be considering the flexitarian diet and in Tabatha Ward’s first article for us, she examines why it is becoming so popular. Evelyn Toner takes us through a review of ONS products, while appropriate prescribing of vital low-protein foods is looked at in IMD Watch by Catherine Kidd, Dietitian at GOSH in London. The IMD condition tyrosinaemia is tackled by Harriet Churchill, as she explains the dietary principles and management of this disorder, which is via a proteinrestricted diet. Our regular features include Face to Face and in this issue Ursula Arens interviews Jenny Rosborough, Public Health Nutrition Campaigner; and in Dietitian's Life we wish Pat Portnoi a happy retirement. If you have important news or Enjoy the read. research updates to share with NHD, or I’m off to roll my would like to send a letter to the Editor, eyes at my printer please email us at and count on my info@networkhealthgroup.co.uk smart phone how We would love to many steps it takes hear from you. me to get it working! Emma www.NHDmag.com June/July 2019 - Issue 145


11 COVER STORY Telehealth for diet & diabetes 6




Latest industry and product updates

Nutrition software and apps


35 Oral nutritional supplements Product range and usage 40 IMD watch Cost effective low-protein foods


19 Cow's milk protein allergy Symptoms, diagnosis and management

27 IBS Current and potential treatment


49 F2F Interview with

Jenny Rosborough

51 Dietitian's life A new role

with the GSG

Copyright 2019. 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

Advertising Richard Mair Tel 01342 824073

Publishing Director Julieanne Murray


Publishing Editor Lisa Jackson Publishing Assistant Katie Dennis Columnist Ursula Arens Design Heather Dewhurst


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It’s all in the taste FruitiVits ® is a vitamin, mineral and trace element supplement specifically designed for children aged 3-10 years on restrictive therapeutic diets.

A great tasting orange flavour Soluble - dissolves easily Low volume - 1 sachet made up in a minimum of 60ml water All in one - A single 6g sachet meets micronutrient* Reference Nutrient Intakes (RNIs)1

Contains 15µg of Vitamin D and 804mg of Calcium per sachet Only 0.5g of carbohydrate per sachet (suitable for the Ketogenic diet)

For further product information or samples, please contact either your local Vitaflo® representative, or call Nutrition Support on: +44 (0)151 702 4937 or email vitaflo@vitaflo.co.uk

* excludes sodium, potassium and chloride.

FruitiVits® is a Food for Special Medical Purposes

REFERENCE: 1. Department of Health (1991) Dietary Reference Values for Food Energy and Nutrients for the United Kingdom. Report of the Panel on Dietary Reference Values of the Committee on Medical Aspects of Food Policy. HMSO, London.


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

For more

nutrition and dietetic news visit our

website at


OBESITY: AN EVER-INCREASING FACTOR IN HOSPITAL ADMISSIONS Admissions to NHS hospitals, where obesity was recorded as either a primary or secondary diagnosis,1 increased by 15% (94,000) during 2016/17.2 The Statistics on Obesity, Physical Activity and Diet, England 2019, is an annual collection of new and previously published figures on obesity, including hospital admissions, prescription items, prevalence among adults and children, as well as physical activity and diet. New figures3 in the report show that around two thirds of the admissions where obesity was recorded as either a primary or secondary diagnosis4 in 2017/18 were for women (66%). Of the 6627 Finished Consultant Episodes (FCEs)5 for bariatric surgery in 2017/18,6 79% of the patients were female. The number of items prescribed by primary care for obesity treatment decreased by 8% from 401,000 items in 2017 to 371,000 items in 20187 and continues a downward trend since a peak of 1.45 million items in 2009. The Net Ingredient Cost (NIC)8 saw an increase for the first time in five years, rising from £6.9m in 2017 to £8.1m in 2018. Adult obesity prevalence9 stood at 29% in 2017, an increase from 26% in 2016, whilst prevalence of child obesity10 in both Reception and Year 6 was over twice as high in the most deprived areas11 than in the least deprived areas: 13% compared to 6% in reception year, and 27% compared to 12% in Year 6. Read the full report ‘Statistics on Obesity, Physical Activity and Diet, England, 2019’ online at https://digital. nhs.uk/data-and-information/publications/statistical/statistics-on-obesity-physical-activity-and-diet/statisticson-obesity-physical-activity-and-diet-england-2019 <accessed 15/05/19> References can be found at the Subscriber zone: www.NHDmag.com

NEW TOOL TO BOOST REFERRALS TO VITAL DIABETES EDUCATION PROGRAMMES Diabetes UK and Kent and Medway STP have introduced a new tool designed to help healthcare professionals boost referrals to structured education courses for people with diabetes. The ‘Improving your diabetes knowledge’ Information Prescription has been developed as part of ongoing efforts to help support people living with diabetes gain better control of their condition and reduce their risk of developing life-threatening complications. Diabetes UK is encouraging HCPs to use the Information Prescription in order to have a useful conversation with their patients about structured education courses and boost referrals to local diabetes courses. The aim is to make the Information Prescription a key part of the patient’s care and treatment. The new Information Prescription is the latest template to be added to Diabetes UK’s Prescription range. Each of these is designed to simplify an area of diabetes management. The new template is available on EMIS and Vision and for download via the Diabetes UK website: www.diabetes.org.uk/IP-Prof. 6

www.NHDmag.com June/July 2019 - Issue 145


NUTRITION SOFTWARE FOR HEALTHCARE PROFESSIONALS In an age where everything seems to be run by technology and as a profession which sometimes is seen as being left in the dark ages, perhaps it’s time we should be embracing new software, apps and online consultations. There is some interesting software out there, useful to dietitians and nutrition professionals, all of which is worth taking a look. Here, I’ve compiled some software that I and other nutrition professionals find useful in different situations. PRACTICE MANAGEMENT SOFTWARE

With the advent of GDPR, all client notes and emails need to be kept secure. There are a few options. If you don’t see a lot of patients then you probably don’t want to pay monthly for a software system. However, these platforms can be useful for storing all patient data, emails and appointment times securely. Whilst you can use something like Dropbox or G Suite for business, these can be cumbersome and do not allow for booking appointments or taking payments. Systems such HealthKit, Nutrium, Healthie and Oviva are well worth trialling. I like having templates for consultations already designed for me and being able to log in and find all information for all my patients in one place without opening a dozen files. HealthKit is free and allows you to give the patient a login to view data, or you can email them through the software. There are templates for letters and the ability to use video call software too; you can also book appointments and take payment. I use this system myself but have not tried out the video software part.

Priya Tew Freelance Dietitian

Nutrium is fairly new to the market and appears to be ever expanding its functionality, but there is a monthly payment starting at £24/month. This includes the ability to make meal plans, analyse food diaries and has a mobile app for the client to use. Healthie is another with a mobile app, billing, calendar and file storage for about the same price for the first five patients. Having an online diary system that you can view on the go and that patients can also view and book themselves into, can be a real timesaver. Gone are the back and forth emails, so, personally, I find using these systems saves me time and lowers my stress levels! Acuity is a good one for automatically taking bookings, payments, syncing with your other diaries to make sure there are no clashes. There are form integrations so you can gather information prior to meeting a patient and carry out initial screening. Other alternatives include vCita, SimplyBook.me and Timely. It is worth checking any system that will integrate into your website. More of us are moving towards working with some patients on a remote basis, via video calls. Again, it is important to make sure that any software you use is secure. Zoom allows you to set up a meeting with an ID code so that only the person with the code can log in. Other options are Skype for Business and Go to Meeting.

Priya runs Dietitian UK. She works with private clients and has a wide ranging portfolio of projects including the food industry, the media and writing articles.

www.NHDmag.com June/July 2019 - Issue 145


Dietplan7 New

Release 7.10

for Windows & MacOS Nutrition Analysis Software Dietplan7 contains all the McCance & Widdowson 7 th Edition and the 2019 Composition of Foods Integrated Dataset plus updated product tables from UK suppliers and the national food tables of Australia, Ireland and the United States The Professional version can be licenced for single or for multiple users while the Personal edition is installed on one computer and the Portable version runs from a USB flash drive using any Windows or Mac OS X host If you held a Dietplan7 support subscription in June 2018 or purchased the software after this date you will shortly receive an upgrade to V7.10 otherwise please contact us to buy it Visit www.dietplan7.com for more information and a 30 day trial Tel: 01403 274166

Forestfield Software

email: sales@forestfield.co.uk


It is always a good idea to road test an app first before recommending it to patients.


The most popular of these is Nutritics, possibly due to it being web-based and easy to use. I particularly like the traffic light system built in for recipe analysis and the reports, however, you are limited to the number of recipes you can analyse. Other software available includes Dietplan 7 from Forestfield Software and Nutrium. With all of these software options, you can have a free trial first, so that you can try all of them out and decide which works best for your practice. Whilst there are other free options available, such as My Fitness Pal, these may not have the range of foods needed and often rely on other people adding in foods (which may not be accurate).

see the benefit! Other people have recommended Trello, Asana and Basecamp. This software can help you plan out your workload and time, work towards the launch of a project and work collaboratively with others. When it comes to finances, the good old Excel spreadsheet will suffice for many nutrition practices and I certainly used this system for many years. Having moved over to using financial software, however, the benefits are many: everything is saved in one place; you can send invoices; keep a track of your overall money in/out for the month and year; chase unpaid invoices; add in expenses and assign everything to categories as you go, so


When working on other projects away from seeing patients, it can still be important to have a system that is secure for emails, storing documents and to access on the go from multiple devices. You have to pay, but G-Suite is a good one for coordinating all your day-to-day activities and work. Dropbox Business or iCloud can be used to store your files securely with password protection and keep them accessible when on the move, or working from multiple locations. Mailchimp, Constant Contact and AWeber are email marketing software packages that you can use for newsletters, landing pages and email campaigns. Mailchimp is very popular due to being free and user friendly. It is of course important to be GDPR compliant when adding anyoneâ&#x20AC;&#x2122;s email address to such a system. Staying on track with projects and multiple pieces of work can be a headache. Personally, Iâ&#x20AC;&#x2122;ve not found a software I like to help me with this yet (and am stuck with numerous to-do lists and notebooks), but I have dabbled and totally www.NHDmag.com June/July 2019 - Issue 145


TECHNOLOGY Table 1: Nutrition apps Area of specialty


Low-FODMAP diet

Monash Uni Diet app, or FoodMaestro


Carbs and Cals

Head and neck specialties


Eating disorders

Recovery Record

Kids nutrition

Sugar Smart

it is ready for the end of your tax year. There are numerous options including Xero, FreshBooks, QuickBooks, Wave Accounting and FreeAgent. I especially like being able to take photos of my receipts and add them into the expenses as I go and add my mileage whilst in the car! Check that the one you choose is able to submit your tax return in light of making tax digital.

and adding text to photos. Something like pic play post is useful for posting multiple images or videos onto one post. Consider Color Story, Snapseed, or VSCO for editing photos and Buffer, Hootsuite, or Color Story again, for scheduling posts. Royalty free photos can come from sources such as Dreamstime, Pixabay and Unsplash.


There is a plethora of apps out there. Some that other dietitians have recommended can be seen in Table 1. It is always a good idea to road test an app first before recommending it to patients. Digital technology is there to help us, but try before you buy!

I firmly believe that as healthcare professionals we need to have a presence on social media, shouting out the right nutrition messages as loudly and creatively as we can. Some good software packages include Canva and Word Swag for making images



• Quarter page to full page • Premier & Universal placement listings • NHD website, NH-eNews and Network Health Digest placements

To place an ad or discuss your requirements please call

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THE ROYAL MARSDEN FOUNDATION TRUST BRINGS YOU THE FOLLOWING EVENTS: 27th June: Foundation in Oncology for Speech and Language Therapists 8th July:

The Long-term GI consequences of Cancer Treatment

12th Sept: Swallowing and Communication Rehabilitation for People Diagnosed with Head & Neck Cancer For more information please visit www.royalmarsden.nhs.uk/studydays



NHS services face growing demands due to an ageing population that is living longer. Diverse ways of working are required to cope with higher demands and the use of technology to deliver personalised healthcare1,2,3 is one way of providing patients with the care they require. This article reports on telehealth in NHS Ayrshire and Arran, which provides dietetic management for patients with diabetes. Telemedicine, telehealth, telehealth care and telecare can be overall defined as the use of technology to deliver personalised healthcare remotely. Data is transferred from the patient and the professional provides feedback.12 With a limited staff resource and in an increasingly financially aware NHS,11 telehealth can help provide a fuller picture of how patients are managing diet, medication, exercise and carbohydrate counting. It is also an opportunity to provide encouragement to achieve agreed goals by bridging the gap between clinical intervention and patient engagement. Telehealth application can help in diabetes dietetic management by getting patients more involved in their care through educating and reinforcing selfmanagement of their condition.10 VanWormer et al (2006),13 Goode et al (2012)14 and Kohl (2013)15 are papers mentioned by PEN, The Global Resource for Nutrition Practice.17 These have demonstrated that technology-assisted interventions (eg, internet/website, email, text messaging and mobile applications) can achieve positive healthbehaviour changes in relation to diet and can promote weight loss in overweight or obese adults, compared with having no intervention or minimal care. (Minimal care refers to receiving only printed material, or having infrequent visits with a primary care provider, whilst tailored interventions and agreed goals incorporate behaviour change principles.)

Personalised patient-centred feedback via email, online discussions and phone discussions appear to be more effective than non-interactive interventions or automated responses.13,14,15,17 WHY TELEHEALTH?

In Scotland, 4 in 10 people have one or more long-term conditions8 and diabetes affects 1 in 18 people according to current statistics â&#x20AC;&#x201C; thatâ&#x20AC;&#x2122;s over 298,504 people.4,5,6,7,16 Furthermore, it is estimated that 29,850 or a further 10% of people in Scotland remain undiagnosed.18 Selfmanagement, which includes blood glucose monitoring, diet and exercise to achieve optimal blood glucose, blood pressure and cholesterol, is a key skill to managing diabetes, and improving diabetes self-management through patient education is fundamental to improving diabetes-related outcomes.19 A more patient-centred approach is encouraged by The Healthcare Quality Strategy for NHS Scotland and using existing resources long term is critical in our financially aware NHS.11 Current diabetes care interventions generally are episodic, over several weeks, months, or even years. A patient receives several hours a year contact with a health professional.19 However, for patients struggling with their diabetes, the potential long wait between appointments is not adequate for the improvement of diabetes selfmanagement. Diabetes education is

Ruth BarclayPaterson Diabetes Dietitian, NHS Ayrshire and Arran Ruth has been a Diabetes Dietitian for five years with previous experience in community and acute. Additionally, Ruth is currently completing a Masters in Health and Wellbeing. She loves fitness and rugby.

REFERENCES Please visit the Subscriber zone at NHDmag.com

www.NHDmag.com June/July 2019 - Issue 145


COVER STORY Table 1: Intervention category groups: confidence results and feedback Intervention category

Average improvement in confidence score

Goal examples

Patient feedback snapshot

GLP1 therapy


• Reduce portions • Reduce snacking behaviour • Increase activity

• Portion reduction; no longer double carbohydrate at meals • Stopped snacking • Improved diabetes control • Clothes fitting better

Carbohydrate counting


• Weigh foods/read labels • Check insulin-to-carbohydrate ratios

• Feeling more comfortable with insulin adjustment • Improved HbA1c (mmol/mol)

Structured education carbohydrate counting


• Carbohydrate: count meal content • Establish insulin-tocarbohydrate ratio (ICR) • Treat hypoglycemia appropriately

• Improvement in HbA1c (mmol/mol) • More confident to problem solve and self-manage diabetes • Reduction on insulin/other diabetes medications



• Regular low GI meals/snacks

• Better condition understanding • Feels more able to manage • Symptoms reduced

Reactive hypoglycaemia


• Assess/calculate carbohydrate content of meals with labels and portion book • Learn carbohydrate content of foods • Keep consistent carbohydrate intake at mealtimes

• Reduced hypoglycaemia • Helped provide information and confidence to manage diabetes better

Other weight management


• •

• Telehealth helped provide engagement to keep motivated to lose weight

Regular meals Carbohydrate: count meals

critical to self-management and all members of the healthcare team should use each patient visit as an education opportunity, making any clinical contact time count.10 A Technology Enabled Care Programme (TEC Programme) was launched in 2014 to help ensure that NHS Boards, Local Authorities, Integration Authorities and their partners were utilising opportunities to include TEC within services. An application for funding via the National TEC Programme was submitted in early 2016. The funding proposal outlined the vision to develop a structured telehealth service in NHS Ayrshire and Arran, to support diabetes self-management and dietary behaviour change. The funding request was for a 0.2 WTE Band 6 dietitian for nine months to allow a set time to develop and integrate the project. Sustainability was considered from the offset and, once developed; it would become a structured 12

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embedded part of core services, which would include ongoing audit and service evaluation to ensure robust cost-effective service delivery. TELEHEALTH ON DIET AND DIABETES (TODD)

The TODD project would be a structured telehealth programme designed to facilitate diabetes and dietary self-management. The rationale behind offering TODD appointments was to make the diabetes dietitian service more accessible to patients and review clinically agreed goals in a more timely manner. Telehealth is rapidly growing in many different interfaces and can potentially access more patients given the geography and demographics of the patients located in NHS Ayrshire and Arran. From a professional prospective, it can help enhance patient/dietitian collaboration, improve health outcomes and reduce medical costs.

COVER STORY Table 2: Dietetic outcome statements achieved Dietetic outcome statement

Achieved goal

1. Glycaemic control


2. Knowledge and confidence


3. Nutritional status


4. Supportive advice


5. Alleviated symptoms


The objectives of TODD were to: • improve patient lifestyle outcomes (agreed goal/dietetic outcome measures); • improve contact on a more regular basis with diabetes specialist dietitian. Self-management education teaches goal setting and problem solving skills and the theory is that these provide the patient with greater confidence in making life-improving changes, achieving agreed goals and yielding better clinical outcome data. The patient is able to identify any problems they are experiencing in relation to their diabetes/diet. The following statements have been agreed as dietetic outcomes for the Dietetic Service in NHS Ayrshire and Arran: 1 To improve glycaemic control to minimise diabetic complications. 2 To improve knowledge and confidence to allow the patient/carer to self-manage. 3 To optimise/maintain/improve nutritional status using the most appropriate intervention. 4 To offer supportive advice (terminal care/ long-term conditions/palliative care). 5 To alleviate symptoms, eg, for IBS, coeliac disease, food allergy, osmotic symptoms. 6 To meet estimated nutritional requirements. Method The TODD project was led by the diabetes dietitians at University Hospital Ayr (UHA). A standard operational procedure was developed and inclusion criteria identified. Patients had to have an initial assessment either from attendance at a 1:1 appointment, or a structured education session and be supported by secondary care for their medical/diabetes care and followed up in a TODD telehealth clinic from a dietetic perspective. This was set up in the Outlook

calendar to support scheduling of appointments. Different methods of contact were identified, including via email, telephone, DIASEND. Outcomes anticipated • Increased patient review capacity with specialist diabetes dietitian. • Reduced DNA rates maximising specialist clinician time. A comparison of 1:1 vs telehealth DNA. • Improved patient confidence in progressing agreed goal and, therefore, overall encouraging patient self-management skills. Approval process • A standard operational procedure (SOP) and implementation plan were developed and approved by the diabetes Managed Clinical Network (MCN), TEC and dietetic clinical governance. This incorporated a patient pathway. • Additionally, supporting documentation data collection forms, agreed goals sheet, patient information sheet and project evaluation questionnaires were developed and included as supplementary information in the SOP. • Each agreed goal has importance and confidence initially assessed on a 1-10 scale and confidence with each agreed goal was reviewed with each patient contact; ‘1’ being not important/not confident and ‘10’ being very important/very confident. It also links in with the six dietetic outcome measures. Results • 33% increase capacity (based on a time saving of 15 minutes versus 1:1 face-to-face (based on 30 minutes for telehealth slot compared with a 45-minute face-to-face slot). • DNA rate improvement of (7%) as 20% 1:1 face to face and 13 % TODD. • Confidence: average of three-point increase in confidence across the 46 patients with 1-3 agreed goals using a 0-10 Likert Scale. • Dietetic outcome statements achieved are outlined in Table 2. Six key intervention category groups were identified and each intervention category captured an improvement in patient goals (see Table 1). www.NHDmag.com June/July 2019 - Issue 145


COVER STORY Table 3: The benefits of TODD Patient outcomes

Staff outcome


Time away from work and travel, some wouldn't have been able to get away.

Maximises clinical time and the increased capacity facilitated service delivery during maternity leave.

Car parking not required.

Reduced fuel use, CO emissions and CO footprint.

Better able to meet patients’ needs in timely manner.

Positive patient experience.

Safe alternative in adverse weather.

Patient attendance better.

Increasing patient choice.

Can increase access choice for some patients (eg, can’t get three buses here).

Optimising clinic outcomes: seeing patients right time and place. Can have TODD running while consultant clinic running when no consultation room available for face to face.

Table 4: Limitations of TODD Patient outcomes

Staff outcome


New way of working, not all patients ready to engage.

Staff feel they already phone – unscheduled; not confident with DIASEND.

TODD is not a replacement for 1:1 appointments, but provides support.

Some patients struggled with the importance of the goal setting philosophy; they didn't get the concept.

No non-verbal cues, limited gestures. Only really tone of voice in calls. Email: depends how typed if replying from phone device likely.

Sticking to the TODD appointment time difficult – not being side tracked by other clinics in department, or incoming calls.

Getting a score sometimes gets in the way of the consultation flow – some scores not captured, as this was a clinician agenda, not patient.


Tables 3 and 4 above summarise the benefits and limitations of TODD. Evaluation feedback of TODD Eight out of 46 patients completed a questionnaire post-TODD intervention. Six questions were asked on a Likert Scale 1-7 'not helpful' to 'very helpful'. Overall, apart from one response, TODD was found to be 'helpful/very helpful'. CONCLUSION

All of the anticipated outcomes were achieved. These included two extra slots every clinic session: an increase of one third (33%) capacity within the TODD clinic session, which is sustainable. Additionally, DNA rates were 7% less compared with dietetic-only 1:1 appointments. Furthermore, there was an average three-point improvement in confidence across all interventions and agreed goals.

Improving patient confidence in progressing agreed goals has helped patients develop self-management skills which are important in the sustainability of long-term condition health management and this project confirms it can be achieved effectively with telehealth intervention. Finally, a considerable number of dietetic outcome statements were achieved across the five main statements clinically relevant. These are directly associated with agreed goals being accomplished, therefore showing the value of dietetic time within the treatment and management of diabetes. Overall, feedback was positive and patients engaged well with this additional contact method. Next Steps: Phase 3 TODD is scoping the possibility of utilising Attend Anywhere (NHS Near Me), which is a new video consulting service within the TODD telehealth structure.

Acknowledgement Thank you to the Scottish Government Technology Enabled Care (TEC) programme board, that funded this programme. Additionally I would like to thank Ayrshire and Arran Diabetes MCN and dietetic colleagues for their support. I would specifically like to mention Gail Blockley for continuing this project while I was on maternity leave and Pamela McCubbin for carrying out Phase 2 at University Crosshouse Diabetes Centre.


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HEALTHY EATING AND LIFESTYLE TO REDUCE THE RISK OF DEMENTIA In the UK, 850,000 people are estimated to be living with dementia. As ageing is the greatest risk factor for dementia, this number is expected to grow rapidly over the next few decades due to an increasing life expectancy. It is estimated that one million people in the UK will have dementia by 2025 and this will increase to two million by 2050.1 With this in mind are there any changes we can make to reduce the risk of dementia? WHAT IS DEMENTIA?

Dementia is an umbrella term that describes a set of cognitive symptoms, which may include a loss of shortterm memory and difficulties with problem solving, visuospatial skills, orientation, or language. Dementia is caused by diseases of the brain such as Alzheimer’s disease, vascular dementia and frontotemporal dementia. Symptoms will vary from person to person and will depend on the part of the brain which has been damaged. Alzheimer’s disease and other dementias are the leading cause of death in the UK and dementia is the most feared condition for people over the age of 50 (ahead of cancer).2 The other top four leading causes of death in 2017 (ischaemic heart diseases, cerebrovascular diseases, chronic lower respiratory diseases and lung cancer), have all seen falling mortality rates over the last 15 years.3 A key reason for this is increased public health information and awareness of the risk factors for these diseases and that lifestyle changes can have a positive impact. There is still no cure for dementia and, with one person developing dementia every three minutes in the

UK,4 it is important to focus on reducing our risk factors, in particular opting for a healthy diet and making lifestyle changes. RISK FACTORS FOR DEMENTIA

In addition to ageing and genetic risks (factors that we can’t change), the most significant risk factors for dementia are poor vascular health, smoking, drinking too much alcohol, diabetes and obesity. Several of these factors are modifiable and swapping to a healthy balanced diet may help reduce the risk of dementia, as well as other conditions such as Type 2 diabetes, obesity, stroke and cardiovascular disease (all risk factors for dementia). As the damage to the brain in dementia occurs 15 to 20 years before the onset of clinical symptoms, it is important to modify lifestyle as early as possible in order to potentially reduce the risk of developing dementia. HEALTHY EATING CHANGES

So what changes can we make? It is often said: “What’s good for the heart is good for the brain” and a Mediterranean diet has been associated in some studies with a reduced risk of cardiovascular disease, in addition to Type 2 diabetes, some forms of cancer and overall mortality.5 A Mediterranean diet incorporates the traditional healthy eating habits of people from countries bordering the Mediterranean Sea. It’s a diet

Gill Hooper Freelance Registered Nutritionist Gill works in training and education around nutrition and hydration to provide quality dementia and frailty care. She is currently working with Bournemouth University looking at the impact of improving nutritional care for people with dementia.

REFERENCES Please visit the Subscriber zone at NHDmag.com

Gill's useful infographic on healthy eating to reduce the risk of dementia can be found at www.NHDmag. com/dementia

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PUBLIC HEALTH that includes plenty of fruit and vegetables, pulses, fish, nuts and wholegrains. Olive oil is used for cooking and it is low in saturated fat, red meat and processed foods. Moderate alcohol consumption with meals is part of the Mediterranean diet, but strictly within national guidelines.6 Similar to the Mediterranean Diet, the research based DASH diet – Dietary Approaches to Stop Hypertension – was originally developed to lower blood pressure (hypertension). Developed in the 1990s, the core foods recommended in the DASH diet plan include fruit and vegetables, low fat dairy, nuts, beans, seeds and grains. More recent research has resulted in the diet being improved to include more protein foods and heart healthy fats, such as olive oil.7 Past research has shown that the Mediterranean and DASH diets have brain boosting benefits, as well as protective qualities against heart disease. A new diet, claiming to lower the risk of developing Alzheimer’s and slow mental decline, was published in 2015 in Alzheimer’s and Dementia: The Journal of the Alzheimer’s Association.8 The MediterraneanDASH Inter-vention for Neurodegenerative Delay (or MIND diet for short) combines elements linked to dementia prevention from these two diets, with some beneficial additions, such as an emphasis on berries, especially blueberries high in antioxidants, and green leafy vegetables, such as spinach. It also recommends wholegrains, nuts, legumes, fish, poultry and olive oil. WHAT ARE THE BENEFITS OF A MEDITERRANEAN OR MIND DIET?

Antioxidant vitamins The antioxidant vitamins, A, C, E and betacarotene can help fight cell damage caused by oxidative stress as we get older, which is linked to Alzheimer’s disease and vascular dementia. The brain is particularly susceptible to oxidative stress for a number of reasons: brain cells are more prone to oxidation and the brain uses more oxygen than other organs. Consumption of a range of fruit, vegetables, wholegrains, nuts and oils will ensure plenty of these antioxidant nutrients in our diet.

Polyphenols Polyphenols are naturally occurring chemicals produced by plants and are widely found in fruit, vegetables, legumes and cereals. Foods that are a good source of polyphenols are often identified by their bright colours. They have antioxidant properties that, as already stated, are beneficial due to the brain being prone to oxidative stress. Some also have anti-inflammatory properties. Berries are a great source of polyphenols, called anthocyanins, especially blueberries, blackberries and raspberries and other richly coloured red, blue and purple fruit. A moderate intake of red wine (within national guidelines6) may be linked with a lower risk of dementia, due to the polyphenol, resveratrol, which is also found in grape juice. Green tea is a good source of EGCG, a flavonoid which can bind to beta-amyloid proteins and help prevent formation of plaques in the brain.9 Flavonols found in cocoa and dark chocolate (at least 70% cocoa solids) may also be beneficial to brain health, but it is important to remember that this doesn’t include milk chocolate! The spice turmeric has gained popularity over recent years. Its yellow pigment, curcumin, has been shown to have antioxidant, anti-inflammatory and antiamyloid properties. B vitamins B vitamins have many health benefits, including a lower risk of heart disease and diabetes. Vitamin B6, folate and vitamin B12 may protect against Alzheimer’s disease and other cognitive decline by reducing homocysteine levels (an amino acid linked with Alzheimer’s disease.) The best sources of folate are found in green leafy vegetables and liver, vitamin B6 in oily fish, meat and fortified cereals and B12 found only in animal products, such as meat, fish and dairy products. Omega-3 fats It may be an old wives tale, but we’ve always been told that fish is ‘brain food’. Is there any truth in this adage? Oily fish, such as salmon, mackerel and sardines, contain the long-chain fatty acids, EPA and DHA which are important for the brain throughout our lives, from early cognitive development www.NHDmag.com June/July 2019 - Issue 145


PUBLIC HEALTH Table 1: Foods to choose and foods to limit as part of the MIND Diet Foods to choose

Foods to limit

Wholegrains – at least three servings a day

Limit red meat to less than four times a week

Leafy green vegetables – every day plus at least one other choice of vegetable a day

Butter – less than one tablespoon a day

Berries – at least twice a week

Cheese – less than one serving a week

Nuts – at least five servings a week

Pastries and sweets – limit to less than five times a week

Legumes – every other day

Fried or fast foods – less than one serving a week

Fish – at least once a week Poultry – at least twice a week Olive oil – primary oil in home cooking Wine – no more than 1 x 150ml glass a day6

in foetuses to learning and memory in adults. Brain cells with high levels of omega-3 in their membranes appear to be better at communicating with other cells.10 There is little evidence to suggest that an omega-3 supplement alone has a role in a reduced risk of dementia, rather, the benefits are from eating the fish and consuming other nutrients alongside the omega-3 fats. LIFESTYLE CHANGES

A report in The Lancet in 2017, Dementia prevention, intervention and care, highlighted ‘nine potentially modifiable health and lifestyle factors from different phases of life that, if eliminated, might prevent dementia.’11 These risk factors include physical inactivity, high blood pressure, Type 2 diabetes, obesity, smoking and social isolation. It was estimated that a third of dementia cases could be prevented by making lifestyle changes. It is also important to keep your brain healthy and active; a phrase we often hear is “use it, or lose it”. Challenging yourself mentally can help build up the brain’s ability to cope with the disease.12 This might include studying for a new qualification, doing puzzles, Sudoku or crosswords, playing board games, or even completing the NHD CPD eArticles (all found online at www.NHDmag. com). Talking and communicating with other people and staying socially active may also help to reduce your risk of dementia. It is important to remember that whilst dementia risk increases with age, it is not an inevitable part of ageing. 18

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A key message from a report published by Alzheimer’s Disease International, states that, ‘there is quite consistent evidence from epidemiological cohort studies that adherence to a Mediterranean diet…may lower the risk of cognitive decline and dementia’.5 Further research is needed to fully understand the preventive role of the Mediterranean diet and the active ingredients to improve cognitive function and reduce the risk of dementia, but a healthy, varied diet with plenty of fresh fruit and vegetables, wholegrains, legumes, fish, nuts, seeds and oils, and low in saturated fats, free sugars and processed foods, is generally beneficial. We know it can help prevent vascular diseases, including stroke and heart attacks, which in turn are risk factors for Alzheimer’s disease and vascular dementia. It has already been said: “What’s good for the heart is good for the brain.” As we have seen, damage to the brain in dementia occurs 15 to 20 years before the onset of clinical symptoms and there is good evidence that healthy eating and a healthy lifestyle can help reduce the risk of developing dementia as we age. This is a message that we should all be talking about and actively making changes. Young people may not be thinking about the possibility of dementia in later life, but most likely, many of them will know a loved one living with dementia and the effects of the disease. If there is a chance we could do something about it by making simple lifestyle changes, isn’t it a chance worth taking?



The UK currently has the highest cow’s milk allergy (CMA) prevalence in Europe, with 2-3% of one- to three-year olds having a confirmed diagnosis.1 As cow’s milk is an important source of nutrition for infants, it is essential that the condition is effectively managed. Cow’s milk protein allergy (CMPA) is the most common food allergy in infants and young children and is the consequence of an abnormal response to one or more proteins in cow’s milk by the immune system.2 CMPA generally presents in infants before the age of one year and is outgrown by the age of five. Children who have other confirmed food allergies, or a family history of atopy, such as eczema or asthma, have an increased risk of CMPA.3 There is evidence to suggest that breastfeeding for a period of at least four months prevents, or delays, the occurrence of CMPA when compared to the feeding of a formula containing intact cow’s milk protein. There is no current evidence to suggest that maternal dietary restriction in pregnancy, or lactation, influences atopic disease.4

as a threat and reacts in a way that produces symptoms. For symptoms commonly seen in CMPA, see Table 1 overleaf. Allergies can be either IgE- or nonIgE-mediated depending on how the immune system reacts. Symptoms caused by immunoglobulin E antibody (IgE) have an acute onset, typically less than two hours/within minutes after ingestion of the food. Non-IgE-mediated allergies are characterised by a delayed onset of symptoms from a few hours to days after ingestion. The pathology of nonIgE-mediated CMPA isn't properly understood and the symptoms are caused by a different part of the immune system than in IgE-mediated allergy. Non-IgE-mediated CMPA is the most common form of CMPA.5



Allergies typically develop during the first decade of life and are directly linked to the maturation of the immune system. Around 90% of food allergies are caused by 14 foods, one of which is cow’s milk. Food allergies are the consequence of an adverse immune response to a particular food; the immune system mistakes harmless substances as a potential threat. In individuals whose immune system has made this mistake, the immune system becomes sensitised to that food protein. Upon reintroduction of this protein, the immune system remembers the food

For CMPA, symptoms are typically observed after exposure to cow’s milk in infant formula, during early complementary feeding, or in breastfed infants due to consumption of cow’s milk in the mother’s diet, which passes into breastmilk. How quickly symptoms appear helps identify the type of allergy; delayed symptoms can often make diagnosis more complex as the symptoms may be caused by an altogether different factor. It is rare, but possible to present with a combination of both IgE- and non-IgE-mediated symptoms.5

Olivia Chaffey Student of Nutrition and Dietetics, Leeds Beckett University Olivia is a nutrition graduate and current dietetic masters student with a keen interest in paediatrics, pregnancy and food allergies. She enjoys interacting with the local community and is a regular food bank volunteer.

Peer reviewed by Mary Feeney Paediatric Allergy Dietitian, King’s College London

REFERENCES Please visit the Subscriber zone at NHDmag.com

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Cow’s Milk Allergy

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PAEDIATRIC Table 1: IgE- and non-IgE-mediated symptoms in CMPA5 IgE-mediated symptoms in CMPA

Non-IgE-mediated symptoms in CMPA

Puritis (itchy skin)

Puritis (itchy skin)


Reddening of the skin

Swelling of the eyes, lips, face

Non-specific rashes coming and going


Significant eczema



Reddening of the skin


Coughing, often sudden and persistent

Straining to pass soft, loose or hard stools

Difficulty breathing, may hear wheezing

Weight loss or not putting on weight

Table 2: A list of foods and ingredients containing cow’s milk protein10 Butter, buttermilk, casein/caseinates, cheese (any form, eg, cheddar, brie), cheese powder, condensed milk, cream, curds, custard, dairy solids, evaporated milk, ghee, butter oil, butter fat, hydrolysates (casein, milk protein, whey), ice cream, infant formula (cow’s milk based which includes lactose-free and partially hydrolysed formula*), lactalbumin, lactoglobulin, low fat milk, malted milk, milk, milk derivative, milk protein, milk solids, non-fat dairy solids, skimmed milk, skimmed milk solids, sour cream, whey, yoghurt

*It’s important to note that the majority of infants with CMPA tolerate extensively hydrolysed formulas.11 IDENTIFICATION, DIAGNOSIS AND MANAGEMENT

CMPA is the consequence of an adverse reaction to the proteins in the milk, specifically whey and casein. The sugar in cow’s milk, known as lactose, can also cause symptoms in individuals, some of which overlap with the symptoms seen in CMPA.3 CMPA is, therefore, often confused with lactose intolerance, as this sugar is responsible for the most common form of non-immune reaction to cow’s milk.6 Secondary lactose intolerance is generally a temporary condition that can happen after a bout of gastroenteritis (stomach bug). It can also occur alongside coeliac disease or other conditions that cause gut inflammation. Other overlapping conditions include atopic eczema and infantile colic. A survey by Allergy UK found that around 15% of parents visited their GP 10 times before receiving a CMPA diagnosis.7 Misinterpretation or non-identification of the allergy can lead to faltering growth and chronic unpleasant symptoms. If CMPA is suspected, or diagnosed, guidance should be acquired from a healthcare professional. NICE has published recommendations for the assessment and diagnosis of food allergies in children under 19 years of age.8 Upon

seeing a GP, an allergy-focused clinical history should be conducted for those with suspected CMPA. The history aims to identify signs of food allergy and the timing and duration of symptoms. This data helps indicate whether the issue is likely to be an allergy and whether it is IgE- or non-IgE-mediated. Depending on the results of the clinical history, specific IgE blood tests or skin prick testing may be performed to confirm IgE-mediated CMPA. There are no skin or blood tests for non-IgEmediated allergies. If non-IgE-mediated CMPA is suspected, cow’s milk is eliminated from the diet for a period of two to six weeks, after which cow’s milk is gradually reintroduced into the diet. This is currently the most reliable test for the presence of this form of CMPA.9 Dietetic support will help ensure adequate elimination of cow’s milk, identify the most appropriate duration for the elimination and guide the reintroduction process. Those with an IgE-mediated diagnosis are typically managed in secondary care, and those with a non-IgE-mediated diagnosis can be managed in primary care with the help of a dietitian. Both IgE- and non-IgE-mediated CMPA require strict avoidance of cow’s milk. This may www.NHDmag.com June/July 2019 - Issue 145


PAEDIATRIC Table 3: Different types of formula and their suitability in the management of CMPA Suitability for infants (0-6m) with CMPA



Extensively hydrolysed

Broken down cow’s milk protein, tolerated by the majority of infants with CMPA.


Generally used when hydrolysed formulas aren’t tolerated.


Not recommended to infants under six months of age.

Lactose free

Based on cow’s milk protein.

involve modifying the diet of breastfeeding mothers, during complementary feeding, or use of an alternative infant formula depending on the child’s age and mode of feeding. It is important to be aware of the variety of foods that include cow’s milk protein, as any foods containing this protein are likely to trigger symptoms in infants with CMPA. Table 2 on page 21 illustrates a non-exhaustive list of common foods containing cow’s milk protein that should be avoided in the diet of infants with CMPA. It’s important to advise that food labels should always be carefully checked to ensure the food does not contain cow’s milk protein. As cow’s milk contains essential nutrients such as calcium, it’s important to ensure individuals are provided with appropriate information on maintaining a healthy balanced diet. The BDA has produced food fact sheets on how to follow such a diet, which include alternative sources of nutrition and how to interpret food labels.12 FEEDING INFANTS WITH CMPA

Breastfeeding provides the best source of nutrition for infants, as the composition of breast milk changes to meet requirements for that specific child’s growth. Breastfed babies can react to cow’s milk proteins in the mother’s milk if the mother is consuming cow’s milk in her diet. If CMPA is suspected/diagnosed in an infant, the mother may be advised to abstain from consuming cow’s milk whilst breastfeeding. If the infant’s symptoms do not improve following the mother’s strict exclusion of cow’s milk from the diet, she can return to her normal diet.13 In formula-fed babies who have suspected/ diagnosed CMPA, changing formula feed will be 22

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necessary. Choosing the appropriate alternative formula is dependent upon a variety of factors, such as the type of allergy and severity of allergic symptoms (ie, degree of hydrolysis required), as well as age. It is vital that an appropriate formula is identified to ensure that the child is meeting their nutritional requirements for healthy growth and development. UK and international guidance, such as the iMAP algorithm,14 are available to help healthcare professionals identify the most suitable choice. For infants who have a high risk of atopy and are predominantly formula-fed, modest evidence suggests that the onset of atopic disease, such as CMPA, may be delayed/prevented by the use of hydrolysed formulas compared with formula made with intact cow’s milk protein.4 However, a recent Cochrane review advises against the use of a hydrolysed formula for allergy prevention in infants with high risk of atopy.22 Extensively hydrolysed infant formulas still contain cow’s milk protein, but the protein has been broken down into significantly smaller pieces. This makes the protein less likely to be detected as harmful by the immune system and they are tolerated by the majority of infants with CMPA. For those who still react to extensively hydrolysed formula, amino acid-based formulas are used, as they aren’t based on cow’s milk. SWITCHING FORMULAS

Although it can be hard to get a baby to accept a new formula due to a new taste and smell, most formula-fed babies under three to four months will readily accept the change to a hypoallergenic formula. For those who are less willing to accept the change, such as older infants with delayed

This material is for healthcare professionals only.



† ‡

Versus an eHCF without LGG® or formulas based on soy or amino acids. The only cow’s milk-based formula.

Reference: 1. Canani RB et al. J Pediatr 2013;163:771–777. Nutramigen with LGG® is a food for special medical purposes for the dietary management of cow’s milk allergy and must be used under medical supervision. Nutramigen with LGG® is not recommended for premature and immunocompromised infants unless directed and supervised by a healthcare professional. IMPORTANT NOTICE: Breastfeeding is best for babies. The decision to discontinue breastfeeding may be difficult to reverse and the introduction of partial bottle-feeding may reduce breast milk supply. The financial benefits of breastfeeding should be considered before bottle-feeding is initiated. Failure to follow preparation instructions carefully may be harmful to your baby’s health. Parents should always be advised by an independent healthcare professional regarding infant feeding. Products of Mead Johnson must be used under medical supervision. *Trademark of Mead Johnson & Company, LLC. © 2018 Mead Johnson & Company, LLC. All rights reserved. LGG® and the LGG® logo are registered trademarks of Valio Ltd, Finland. Date of preparation: September 2018 UK/NUT/18/0060i

PAEDIATRIC reactions, mixing the new and old formula together can help with the acceptance process. This can be performed over a few days. If the change still proves hard to accept, adding a few drops of alcohol-free vanilla extract to the bottle may help.13 Typical consequences of feed change to infants include changes in bowel habit, such as temporary constipation, or a change in stool colour. Soya-based formulas aren’t recommended in the UK to infants under the age of six months due to the phytoestrogen content. The consumption of rice milk in children under five years is also not recommended due to their high inorganic arsenic content.15 Lactose-free formulas are based on cow’s milk protein and are, therefore, not suitable for infants with suspected/diagnosed CMPA.

protein, reassessment should occur every 6 to 12 months.6 This involves the reintroduction of cow’s milk to the diet and monitoring for the return of symptoms. In IgE-mediated CMPA, reintroduction is carried out following repeat allergy tests: specific IgE blood tests or skin prick tests, which indicate that the allergy is likely to have been outgrown. The child may undergo a milk challenge in a supervised clinical setting prior to reintroducing at home.23 NICE has devised management guidelines for suspected and confirmed CMPA in children and young people.11 Also, 12 clinical experts came together to create guidance with a specific focus on milk allergy in primary care (MAP guidelines).14 In 2017, these guidelines were updated to become the iMAP milk allergy guidelines; an international interpretation of the original guidelines.17 They are currently REINTRODUCTION OF COW’S MILK AND undergoing further review.18 ESTABLISHING TOLERANCE IN NON-IGE The iMAP guidelines were developed in MEDIATED CMPA response to the under and delayed recognition Around 90% of children will grow out of CMPA of non-IgE-mediated CMPA.19 They aim to by adulthood.16 In order to assess whether the help clinicians better recognise, diagnose and 15/2/2019 4:32:43 PM child hasKDF_NHD_96x140mm_path_150219.pdf developed tolerance to 1cow’s milk manage non-IgE-mediated CMA in infants by










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This material is for healthcare professionals only.



Versus Nutramigen without LGG®.

Reference: 1. Canani RB et al. J Allergy Clin Immunol 2017;139:1906–1913. Nutramigen with LGG® is a food for special medical purposes for the dietary management of cow’s milk allergy and must be used under medical supervision. Nutramigen with LGG® is not recommended for premature and immunocompromised infants unless directed and supervised by a healthcare professional. IMPORTANT NOTICE: Breastfeeding is best for babies. The decision to discontinue breastfeeding may be difficult to reverse and the introduction of partial bottle-feeding may reduce breast milk supply. The financial benefits of breastfeeding should be considered before bottle-feeding is initiated. Failure to follow preparation instructions carefully may be harmful to your baby’s health. Parents should always be advised by an independent healthcare professional regarding infant feeding. Products of Mead Johnson must be used under medical supervision. *Trademark of Mead Johnson & Company, LLC. © 2018 Mead Johnson & Company, LLC. All rights reserved. LGG® and the LGG® logo are registered trademarks of Valio Ltd, Finland. Date of preparation: September 2018 UK/NUT/18/0060i


How quickly symptoms appear helps identify the type of allergy . . .

providing information on each of these aspects of care. The guidelines also provide information to parents in regard to understanding the allergy and gradually reintroducing cow’s milk into the diet. As the guidelines are based on international resources, some of the recommendations are different to those of the UK. For example, soyabased formulas are recognised as an alternative to cow’s milk for children of all ages in the iMAP guidelines. In the UK, it is only recommended for those aged 6+ months. It must be remembered that a minority of infants suffer with the condition and some associated symptoms are multifactorial which can make CMPA diagnosis particularly challenging. However, in infants whose symptoms are multiple, chronic or resistant to medical treatment, it is important to consider the possibility of CMPA. Information around the condition and exclusion and reintroduction of cow’s milk protein should be discussed with parents/caregiver. If the reintroduction of cow’s milk triggers the initial symptoms, a diagnosis can be made. Failure to do this can lead to unnecessary elimination of cow's milk, or can lead to an inaccurate diagnosis.19 THE MILK LADDER

The iMAP milk ladder helps individuals who are caring for a child with mild/moderate nonIgE CMA to establish tolerance to cow’s milk protein.20 Once cow’s milk has been excluded from the diet for the appropriate amount of time (as agreed with a healthcare professional), it can be gradually reintroduced to establish a tolerance threshold. The ladder typically consists of six steps and dietetic support should be received whilst using the ladder, until all steps have been successfully climbed. The ladder 26

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provides advice on how to progress, each step upwards includes foods with increasing amounts of cow’s milk protein or foods where the milk protein is in a less processed or more allergenic form. The steps may be adjusted by a healthcare professional depending on the child. iMAP recipes are available to complement each step of the ladder.21 Baked foods, such as biscuits and cakes, should be introduced initially (step 1 of the milk ladder), as they are less allergenic compared to fresh liquid cow’s milk. However, some infants may begin at a different step depending on their current diet. The child should be symptom-free when starting the ladder. If symptoms occur upon ingestion, cow’s milk elimination should continue and reevaluated after a further six to 12 months. The duration at each stage of the ladder is child-specific.20 The child should continue to consume foods tolerated at each step, along with foods tolerated at any previous steps as part of a healthy diet. CONCLUSION

CMPA is a complex allergy in terms of recognition and diagnosis. It is important that families receive timely support to confirm the diagnosis and to optimally manage this condition. The iMAP guidelines have made a significant contribution to increasing awareness and education of non-IgE-mediated diagnosis, on both a national and international level.17 Allergy UK has announced that a review is currently underway of these guidelines which may further improve detection and management.18 Other guidelines from NICE and BSACI are available to support healthcare professionals.11,23


IRRITABLE BOWEL SYNDROME This article will be outlining current and potential treatment approaches of IBS, including genetic links in its aetiology. Irritable bowel syndrome (IBS) is the most common functional gastro-intestinal disorder, characterised by abdominal pain and changes to stool frequency, form or both. It is reported to effect on average 11% of the worldwide population.1 Whilst symptoms are not likely to be indicative of physical damage, they can have a significant detrimental effect on quality of life. Global prevalence rates of IBS are estimated to be around 7-21%,4 although the actual incidence may be much higher, as many people may not seek medical help for their symptoms. Twice as many women as men are thought to be affected and symptoms of IBS may cross-over into gender-specific conditions such as endometriosis in some of these women. As a functional gastrointestinal disorder, a diagnosis is made once other medical causes for symptoms have been ruled out. Rome IV criteria may be used to inform a diagnosis of IBS subtype according to stool type: • Diarrhoea predominant (IBS-D), which is the commonest subtype. • Constipation predominant (IBS-C). • Mixed, fluctuating between diarrhoea and constipation (IBS-M). • Unclassified (IBS-U)2. These subtypes are no longer distinct, but are recognised as being on a spectrum, depending on ‘the person’s quantity, intensity and severity of different symptoms’.2 As the diagnosis of IBS is based on exclusion of other medical causes, clinical investigations carried out by a patient’s GP may include: • full blood count (FBC) to assess for anaemia; a raised platelet count may suggest active inflammation as an alternative cause for symptoms; • inflammatory markers, such as

erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP), may be raised if there is active inflammation or infection; • coeliac serology to exclude coeliac disease, particularly if there is diarrhoea-predominant IBS or mixed symptoms.3 WHAT CAUSES IT?

The exact cause of IBS remains unclear, as symptoms and pathology differ case to case. Suggested causes of symptoms are: • increased gut sensitivity; • increased or reduced gut motility; • psychological factors, ie, stress and anxiety; • post-infective (following a gastrointestinal infection). As genetic research techniques advance, there has been an interest in identifying factors that may be linked to IBS development. A recent large scale study looked at genetic data from over 346,000 participants in the UK Biobank and from further centres in Europe and the US. A significant association was found between chromosome 9q31.2 and 13 other loci. Variants at locus 9q31.2 were associated with the risk of IBS in women, but not shown in men.5 Whilst the study was well-powered, there was no way to confirm clinical diagnosis of IBS in participants, as donors in the Biobank self-report this data. The identification of this significant risk locus for IBS may help to highlight a link between sex hormones and autonomic nervous dysfunction in people with IBS – interesting insight of the higher incidence of IBS in women – and potentially leading to novel treatments following further research. Early childhood development may also be of importance, with a recent

Jessica English RD Freelance Dietitian, founder at Level Up Nutrition Jess runs Level Up Nutrition, working with individuals on a one-to-one basis in Brighton and online UK-wide. Jess has a special interest in health communications and global public health nutrition.

REFERENCES Please visit the Subscriber zone at NHDmag.com

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CONDITIONS & DISORDERS research paper linking stress in early childhood to the development of IBS at a later age. The study looked at induced stress in rodents using neonatal maternal separation, identifying potential areas for research into the underlying mechanisms of action.6 DIETARY MODIFICATION

IBS is notoriously difficult to treat. Current guidelines recommend diet and lifestyle modifications that patients may struggle to implement and maintain without structured support, and this may be difficult to provide under the NHS. Healthcare providers are encouraged to give as much information, guidance and support as possible to patients. Many people resort to dietary modification to help manage their IBS, with 90% of people reporting that their symptoms are affected by certain foods.7,8 The most common dietary modifications followed by healthcare professionals in the UK include basic NICE guidelines3 and a low-FODMAP diet. NICE guidelines include: • regular mealtimes; • adjusting fibre intake according to symptoms; • adjusting intact caffeine, alcohol, spicy and fatty foods and fizzy drinks; • trial probiotics, if desired, for up to four weeks (no specific probiotic recommended) to determine adequacy. If first-line dietary and lifestyle advice isn’t effective, NICE and the BDA recommend the use of single-food avoidance and a low-FODMAP diet under the guidance of a healthcare professional. The low-FODMAP diet Certain fermentable carbohydrates have been shown to worsen symptoms of bloating, pain, stool form and frequency in people with IBS. The low-FODMAP diet is designed to initially reduce the overall intake of these foods; they are then reintroduced as ‘challenges’, with the overall aim being to develop a personalised tolerable level of FODMAPs whilst maintaining a balanced diet. The low-FODMAP diet has been shown to be effective for many people, although, as it is a very restrictive diet, attrition rates in studies have been high. The diet may also be less effective in people with mainly constipation-predominant IBS symptoms.9 28

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Whilst still in the early stages of development, new research is hopeful of an an assessment to identify suitability for this diet.10 If found to be effective, this could mean a simple and non-invasive faecal analysis to assess suitability for various interventions. This method is, however, limited by the high potential for stool variability dependent on many factors, which may change daily. LIFESTYLE INTERVENTIONS

Although evidence is limited, NICE guidelines recommend that increasing physical activity can have a positive effect on IBS symptoms, potentially due to the stress-reducing effect of such activities, or an associated increase in gut motility. Research into the effect of physical activity has shown that not only could regular physical activity be helpful in reducing symptoms, but a lack of physical activity may even worsen them.12 A small study from 2015 highlighted the longer-term benefits of exercise in those with IBS, with exercises primarily being aerobics, cycling and walking.13 In 2017, a small study also demonstrated an equivalent improvement in IBS symptoms for an intervention involving yoga compared with a low-FODMAP diet.14 Conversely, some types of physical activity, such as higher intensity training, may worsen symptoms, with activities such as running, causing heartburn, diarrhoea and nausea in some people. PHARMACOLOGICAL

There’s limited evidence to support pharmacological agents in the treatment of IBS, with many studies focusing on the effectiveness of antispasmodic agents, such as mebeverine, in conjunction with lifestyle modifications. Antispasmodics are thought to affect pain caused by spasmodic muscle contractions after eating, in patients with IBS. In patients with IBS-D, in particular, this may be helpful as they may have increased contractility in the bowel.15 As there is some evidence of bile salt malabsorption in some people with IBS,16 bilesalt binders may be effective in this population. However, research into this area is limited and lacking well-designed RCTs.17 Other treatments may include: • selective serotonin reuptake inhibitors (SSRIs); • tricyclic antidepressants (TCAs); • laxatives or anti-motility agents.18


Talking therapies, such as mindfulness-based cognitive behavioural therapy (CBT) and gutfocused hypnotherapy, have been shown to be equally effective as a low-FODMAP diet in treating symptoms of IBS.19,20,21 As the physiological link between the gut and the brain continues to be investigated (the gutbrain axis), it’s becoming apparent that people whose IBS is triggered by stress and anxiety may have enhanced gut-brain communication. This could mean that stress and anxiety could influence gut symptoms, or conversely, that gut symptoms may impact on psychological wellbeing. NICE recommends talking therapies such as CBT to help with symptoms where appropriate and a recent RCT showed that both web and telephone-based CBT could be helpful in improving symptoms,22 although this method won’t be suitable for everyone. PRE- AND PROBIOTICS

Although the research base continues to expand, FEDX no - May specific of probiotics 2019.pdf 1 strains 28/05/2019 16:44:29 are currently recommended for IBS, or for

different IBS-subtypes.23 Patients who wish to trial probiotics are recommended to take one brand for a minimum of four weeks and monitor effectiveness, stopping if there are no improvements.3 Prebiotics may also be beneficial in the treatment of IBS symptoms, with a recent small study showing statistically significant improvements equivalent to a low-FODMAP diet for many outcomes.24 CONCLUSION

Due to the varying nature of the condition, individualised treatment remains the ideal pathway for many people to achieve adequate symptom relief. If first-line treatments are ineffective, second-line interventions include a low- or modified FODMAP approach, if appropriate, or other dietary modification alongside lifestyle modification and psychological therapies if suitable. Research is ongoing into the aetiology of IBS, with genetic factors being investigated and potential for future pharmacological therapies resulting from this.

Meet the most clinically researched acidophilus For every day EXTRA STRENGTH is a premium daily probiotic containing L. acidophilus NCFM® - considered the world’s researched acidophilus strain.

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Call for Research Reviews from NHD and British Lion eggs Network Health Digest (NHD) and British Lion eggs surveyed readers earlier this year about eggs and found that there’s still much about this nutrient-packed food that healthcare professionals are unclear about. To help educate your peers, we would like your original research reviews on the role of eggs in the diet. We are looking for fully referenced articles discussing two key themes: 1. Understanding the fat content and calories in eggs, as well as additional nutritional benefits they offer. 2. Egg safety, especially in relation to babies and older people, and allergy. The best article will be published in NHD later this year and the winning author will



Entries will be judged by NHD Editor Emma Coates RD and Dietitian and Health Writer, Dr Carrie Ruxton.


For a ‘Contributor template’ and further guidance on submissions please email info@networkhealthgroup.co.uk. We look forward to receiving your entries. For more information on eggs please visit www.egginfo.co.uk For the terms and conditions please email: info@networkhealthgroup.co.uk

Deadline for submission Monday 1st July 2019



In the UK, there has recently been a rise in the so-called flexitarian diet, with 21% of the UK population now classifying themselves as ‘flexitarian’ or ‘semi-vegetarian’.1 Here, we look at why it is becoming so popular and consider the benefits of flexible eating. The term ‘flexitarian’ has become so popular that in 2014, it was even added to the Oxford English Dictionary, where it is defined as ‘a person who follows a primarily, but not strictly, vegetarian diet, occasionally eating meat or fish.’2 But, what actually is flexitarianism? Is it just another fad, or does it hold the key to following a healthy and balanced lifestyle without guilt and restriction? WHAT IS A FLEXITARIAN?

Exactly as it sounds: a flexible vegetarian. The term was created by a vegetarian dietitian in 2009 who still wanted to eat meat on special occasions without being deemed a ‘fake vegetarian’.3 The diet itself is predominantly vegetarian, but still allows for occasional meat and fish consumption. It encourages people to follow a more plant-based diet in order to achieve the proposed benefits (see overleaf). The diet focuses on introducing more plant-based proteins into everyday life, in place of animal sources. By doing so, you can still reap the benefits of a vegetarian lifestyle without the need for complete abstinence from your beloved steak. Flexitarianism also advocates a reduction in processed and sugary foods as part of a healthy lifestyle.

But, how much meat can you have on the flexitarian diet? There are in fact, no prescribed quantities of animal products. It’s completely up to you. You might eat meat once a week, or as a rare treat when out at a restaurant. The focus is not on how much meat to eat, but more on how many plant-based foods you can include in your current diet. By doing this, the diet hopes to naturally replace the amount of processed and animal products previously consumed. This, therefore, makes flexitarianism more of a lifestyle choice than a shortterm fix, or so-called 'fad diet'. It also removes the element of restriction, as nothing is eliminated. This contrasts to several other diets which cut out whole food groups. For example, the Atkins diet restricts all carbohydrates in place of protein and fat. But, evidence suggests that restrictive diets don’t work in the long term and many people put on more weight than initially lost.4

Tabitha Ward Postgraduate Dietetics Student Tabitha is currently studying Postgraduate Dietetics at Caledonian University. She also holds a BSc degree in Food Marketing and Human Nutrition from Newcastle University. Her interests primarily lie in weight management and behaviour change, but she is also interested in Sports Nutrition.

REFERENCES Please visit the Subscriber zone at NHDmag.com


Because of its relaxed approach to plant-based living, it may serve as a good starting point for carnivores who are worried about consuming too much meat, whether for health or environmental reasons. This is

Table 1: Principles of the flexitarian diet3 Eat mostly fruit, vegetables, legumes and wholegrains. Include plant-based proteins, such as beans, pulses and tofu. Limit sugary and processed foods. Occasional consumption of unprocessed meat and animal products. www.NHDmag.com June/July 2019 - Issue 145


DIET TRENDS especially important for those who may wish to go fully vegan or veggie, but lack the confidence to do so due to running the risk of failure and giving up. According to research by the US Humane Research Council (an organisation promoting meat-free diets), four out of five vegetarians or vegans are unable to maintain their new diet, with 84% eventually reverting back to their usual diet of meat and animal products.5,6 But why is this? There are several reasons for quitting including making drastic changes in a short timeframe, which are unrealistic to maintain, rather than making gradual changes. This can be a difficult transition and many may find themselves stuck with what to eat.5 Eventually, they may give into the temptation of consuming the animal products they are so used to, which are readily available in our everyday environment. This is where the flexitarian diet can come into play. It can act as a happy medium, as flexitarians can still have their cake (or in this case animal products) and eat it too. This may reduce the risk of temptation and cravings. It can, therefore, be more beneficial for those wanting to adopt more vegetarian attributes, as it focuses on gradually reducing consumption of animal products, rather than eliminating them altogether. With gradual cutbacks and the introduction of meat-free weekdays (we’ve all heard of the meat-free Monday), the diet seems achievable for many and appeals to those wanting to adopt healthier lifestyle traits for the long run without running the risk of failure. Restaurants have now cottoned on to the trend and have created new and exciting veggie options. Gone are the days of the side salad or cheese omelette being the only vegetarian options on the menu! Conversely, the flexitarian diet is not only for those trying to reduce their meat consumption, but may also include vegetarians and vegans who are trying to reintroduce meat back into their diet.7 This may be due to several reasons, such as the prevention of deficiency, or to improve nutritional adequacy. For example, vegetarian teenagers or vegan athletes may be advised to introduce animal proteins into their diet to increase the amount of haem iron, in order to reduce the risk of iron-deficiency anaemia. 32

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It’s better for our health The health benefits of a flexitarian diet are similar to those of a vegetarian diet. Research shows that vegetarians not only have a lower body mass index, but they also have a lower mortality rate than meat eaters and have lower incidences of several health conditions, including cardiovascular disease, Type 2 diabetes and cancer.8 This is likely to be transferable to flexitarians and is supported by research showing significant improvements in health status in those with a predominantly plant-based diet, allowing for small amounts of animal products.9 In addition, if you follow the flexitarian style diet correctly, you will inevitably be getting more fibre in your diet. Great news for our digestive health! It’s better for the environment Meat and dairy production is responsible for 60% of agriculture’s greenhouse gas emissions.10 By eating less meat and increasing the amount of plants in our diet, we could significantly reduce greenhouse gas emissions and reduce our carbon footprint.11 This is supported by research from Oxford University suggesting that if we all stuck to the healthy global diet guidelines (eating no more than 300g meat a week), we could cut global food-related emissions by almost a third.11 You can still get the benefits of animal products Meat, fish and dairy are a great source of a whole host of nutrients that are not always available in plant foods. For example, haem-iron is only found in animal proteins (especially in red meat). This contrasts to vegetarian and vegan diets that restrict animal products, running the risk of potential nutrient deficiencies if not planned carefully.12 You save money Plant-based proteins, such as beans and pulses, are significantly cheaper than animal proteins and are more readily available. This means that when you do decide to buy meat, you have a bigger budget to spend on better quality meat as you buy it less often.



Flexitarians can be difficult to study. They create and follow their own rules and each will eat varying quantities of meat and plantbased proteins based on their preferences. This creates a paradox when determining cause and effect, as those still eating a diet rich in animal products (albeit less than their previous omnivorous diet), may not be representative of what is expected from a flexitarian. Furthermore, it can be difficult to determine other lifestyle factors of flexitarians. Are the proposed health benefits purely down to diet, or a combination of several lifestyle factors combined? For example, flexitarians may demonstrate more health-conscious behaviours, such as being more physically active and not smoking compared with meat eaters. This complicates matters. Depending on the level of restriction, flexitarians may be at risk of nutrient deficiencies, This is because animal products are the biggest source of several vitamins and minerals in our diets, such as iron and vitamin B12.9 Therefore, if we cut animal products back without the knowledge of how to replace them, we run the

risk of nutritional inadequacy, which could have detrimental effects on our health and wellbeing. Furthermore, a more plant-based diet is likely to be lower in calories. Although this may benefit those hoping to lose weight, it may prove problematic to the vulnerable population who are trying to gain weight. CONCLUSION

Flexitarianism is becoming increasingly popular due to a combination of health, environmental and animal welfare concerns. It focuses on moderate consumption of animal products, rather than complete restriction, so may just act as a happy medium for meat eaters wanting to adopt healthier habits (without having to give up their beloved bacon sandwich). At the end of the day, eating more plantbased foods is good for our health, irrespective of whether we are flexitarian, vegan, omnivore, or whatever else is to come. The principles of the flexitarian diet reflect those of a healthy diet, compared to restrictive short-term fad diets, so following the diet may just be a step in the right direction for those wanting to live healthier and more sustainably. www.NHDmag.com June/July 2019 - Issue 145



ORAL NUTRITIONAL SUPPLEMENTS: THE RANGE AVAILABLE AND HOW TO USE THEM As dietitians, we follow the mantra of 'food first', aiming to meet our patients’ nutritional requirements using real, easily accessible, affordable and appetising food. However, while we have many tools in our box to elevate the nutritional density of our patients’ food (for example, high energy/high protein snacks, food fortification and optimised menu planning), unfortunately, this is not always sufficient, and there is still a shortfall between nutritional intake and requirements. This puts patients at risk of developing malnutrition. Malnutrition (a dirty word to a dietitian) instantly pricks our ears up and sets the wheels in motion to get to work to rectify the situation! But what is ‘malnutrition’? NICE defines it as, ‘a state in which a deficiency of nutrients such as energy, protein, vitamins and minerals causes measurable adverse effects on body composition, function or clinical outcome”.1 Unfortunately, malnutrition is a prevalent problem in the UK with approximately 1 in 10 people over the age of 65 either malnourished or at risk of malnutrition.2 However, it is suggested that the majority of people at risk of malnutrition are actually younger than this, with more than three million UK citizens suffering from malnutrition at any one time.3 This places a huge financial burden on our already stretched health and social care system, with malnourished patients costing two to three times more to treat than a comparable well-nourished patient.4 More importantly, and aside from the financial burden, malnutrition causes further health complications in an already vulnerable patient; for

Evelyn Toner RD Freelance Dietitian

example, impaired immune response, compromised muscle strength, delayed wound healing, longer hospital stays and an escalation of medical care. THE NEXT STEP FROM FOOD FIRST

Oral nutrition support is the first tool in the dietitian’s repertoire for tackling malnutrition and when the food-first approach fails to achieve the desired results, we will opt for oral nutrition supplements (ONS) as the next step. If possible oral nutrition support, using such supplements, is preferential to enteral or parenteral feeding, as it has less risk of complications or side effects, is less invasive and is more cost effective.5 ONS are generally calorie dense preparations that come in the form of liquids, semi-solids or powders. Some are available to purchase over the counter; however, the majority are prescribable. These products provide macronutrients and micronutrients in varying quantities and are intended to supplement the patient’s diet, not usually to be the sole source of nutrition and, as such, they are not nutritionally complete. The use of ONS has been extensively studied with convincing findings as to their benefits in terms of improving nutritional status, reducing mortality, complications and length of hospital stay.1,6,7,8

Evelyn’s specialist areas include sports nutrition and gastroenterology, especially IBS and health and wellbeing. She enjoys media work and running her social media persona ‘The Active Dietitian’ (on Instagram as @the_active_ dietitian).

REFERENCES Please visit the Subscriber zone at NHDmag.com

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CLINICAL Table 1: The most common types of ONS available (adapted from BAPEN 2016)11 Type



Juice type

Fortijuce, Ensure Plus Juce, Fresubin Jucy

Volume ranges from 200-220ml with an energy density of 1.25-1.5kcal/ml. They are fat free.

Milkshake type

Fortisip, Fortisip Compact (protein/fibre), Fortisip 2kcal, Fortisip Extra, Ensure Plus, Ensure Compact, Ensure Twocal, Altraplen Compact, Resource Energy, Resource 2.0 Fibre, Fresubin Energy, Fresubin 3.2kcal Drink, Fresubin 2kcal Drink

Volume ranges from 125-220ml, energy density ranges from 1-2.4kcal/ml. Also often available with added fibre.

High-energy powders

Complan Shake, Scandishake Mix, Ensure Shake, Enshake, Foodlink Complete (+/- fibre), Aymes Shake

Volume ranges from ~125-350ml, ideally made up with full cream milk to give an energy density of 1.5-2.5kcal/ml.

Soup type

Vitasavoury, Aymes Savoury, Ensure Plus Savoury

Volume ranges from 200-330ml. Some are ready mixed, and others are a powder and can be made up with water or milk to give an energy density of 1-1.5kcal/ml.


Forticreme Complete, Nutilis (Complete Creme Level 3, Fruit Level 4), Ensure Plus Crème, Nutricrem, Aymes Creme, Fresubin Dessert Fruit, Fresubin YoCreme

Smooth semi solid style products (often IDDSI level 3 or 4) with an energy density of ~1.4-2.5kcal/ml.

High protein

Fortisip Compact Protein, Fortisip Extra, Protifar (powder), Ensure Plus Advance, ProSource range (Liquid, Plus, Jelly), Altraplen Protein, Fresubin Protein Energy

Range of presentations; jellies, shots, milkshake style containing 11-20g of protein in volumes ranging from 30-220ml.

Low volume high modules (shots)

Calogen, Calogen Extra, ProCal Shot/ Powder, Altrashot, Fresubin 5kcal Shot Drink

These are fat- and/or protein-based products that are taken in small quantities (shots), typically 30-40ml as a dose taken 3-4 times daily.

Table 1 above shows a summary of the most common types of ONS available on the market today. As we can see, there is a wide variety of nutritional supplements for dietitians to choose from and this needs to be done with careful consideration of the patients’ individual requirements and preferences in order to increase compliance, as they will only do their job if they are actually consumed! Studies have suggested that taste is the most important factor in ensuring compliance, and having a variety of different flavours available will prevent taste fatigue.9,10 But choosing the best flavour is only one element in the decision making process; factors such as texture preferences, disease state, medical restrictions, fluid restrictions, electrolyte disturbances, swallowing ability (dysphagia), independence and cultural and religious beliefs, all need to be considered when designing an effective ONS regime. For this reason, medical nutrition companies have devised specialist ONS to cater for specific disease states. Table 2 shows some examples of these specialist supplements for use in adults. Please note that this is not an exhaustive list and individual research 36

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should always be done into the most appropriate supplements for your patient’s medical status. ASSESSMENT

Hospitals and care homes should screen all patients on admission for malnutrition using a validated nutritional screening tool, eg, ‘MUST’, and repeat screening at regular intervals or when there is clinical concern.1 If there is a concern around the existence or development of malnutrition (ie, if a certain threshold score in the tool is reached), an onward referral should be made to the dietitian for a full assessment. As discussed, there are many complex factors to be considered when designing an effective ONS regime, therefore, the patient should be fully assessed by a healthcare professional/dietitian trained in evaluating nutritional requirements before being started on ONS.1 Nutritional requirements for energy, protein, fluid, electrolytes, minerals and fibre need to be calculated, alongside considerations such as activity levels, underlying disease

CLINICAL Table 2: ONS for specific clinical indications/disease states Supplement name/range

Disease state/notes


Epilepsy/MCT ketogenic diet

Lophlex/Anamix ranges

Inborn errors of metabolism

Nutilis Complete/Fruit range

Dysphagia specific products, which include prethickened drinks and semi-solid products


For the dietary management of early Alzheimer’s disease

Renilon 7.5

Fluid or electrolyte restriction,in renal disease patients


Cachexia in oncology patients contains n-3 fatty acids and fibre


COPD/respiratory patients


Weight loss in oncology patients – contains n-3 fatty acids and antioxidants

Nepro HP

High-energy, low electrolyte, low volume for use in renal disease patients

Vital 1.5kcal

Peptide based for use in dsease-related malnutrition and malabsorption or for those who experience symptoms of poor feed tolerance

Modulen IBD

Crohn’s disease

Oral Impact

For the dietary management of major elective surgery patients

MCT Procal

MCT supplement/fat malabsorption

PKU, MSUD, TYR, MMA/ PA specialist products (Gel, Express, Cooler)

Specialist amino acid-based products for use in inborn errors of metabolism

Keyo, Betaquik, Carbzero

For use as part of ketogenic diet therapy for drug resistant epilepsy and neurometastic disease, e,g. GLUT-1 deficiency syndrome

states and their consequences, eg, pyrexia, or taste changes, gastrointestinal tolerance, risk of refeeding syndrome and monitoring plans.1 A thorough knowledge of the patient and their circumstances is essential before prescribing any supplements, to ensure they are suitable for any restrictions they may have, eg, dietary restrictions: gluten/lactose free, fluid restrictions, religious or cultural beliefs including Halal, Kosher, etc. Furthermore, it is important to consider swallow ability. If there is a history of any difficulties, or the patient/relatives express any concern, a swallow assessment may be appropriate and an onward referral made to a speech and language therapist. Supplements of an appropriate consistency can then be




Nestle Health Science

Nestle Health Science/ Vitaflo

prescribed, or a thickener added as necessary. A patient should also be educated on how to improve their nutritional intake from food alongside any ONS prescription.11 According to NICE (2006), the initiation of nutrition support should be considered when any of the following are evident:1 • a body mass index (BMI) of less than 18.5kg/m2; • unintentional weight loss greater than 10% within the last three to six months; • a BMI of less than 20kg/m2 and unintentional weight loss greater than 5% within the last three to six months; • little or no nutritional intake for more than five days and/or are likely to eat little or nothing for five days or longer; www.NHDmag.com June/July 2019 - Issue 145


Oral nutritional supplements (ONS) might contain milk protein, but that doesnâ&#x20AC;&#x2122;t mean they all have to taste like milk. If your patients are getting bored with their milkshake-style ONS, why not try them on Ensure Plus juce? It packs balanced nutrition into a refreshingly different juice-style supplement, and comes in a wide range of flavours, so thereâ&#x20AC;&#x2122;s always a taste to match theirs. ENSURE PLUS JUCE. FOR MORE INFORMATION, VISIT OUR WEBSITE NUTRITION.ABBOTT/UK

Date of preparation: May 2018 ANUKANI180120q Like all juice-style ONS, Ensure Plus juce contains milk protein, and is not suitable for patients on a milk protein restricted diet.

CLINICAL • poor absorptive capacity and/or high nutrient losses and/or increased nutritional needs from causes such as catabolism. MONITORING

• Laboratory blood tests as appropriate depending on the patient’s setting and clinical condition, eg, sodium, potassium, glucose, full blood count.

Ensure Plus Juce ad - camp cows - SP - NHD

Any patient on ONS should be monitored and reviewed by the appropriate healthcare professional at regular intervals to ensure the ongoing appropriateness of their prescription. The frequency of monitoring will depend on a number of factors, one of which being the care setting; for example, a hospital patient on ONS may be reviewed every couple of days, whereas for a patient in the community, it may be every few months. As a patient becomes more established on their regimen, the intervals may extend. When monitoring a patient on ONS, the following factors should be assessed:1 • Total nutritional intake from all sources – daily, then twice weekly. • Weight, BMI – weekly, then monthly. • Other anthropometric measures as available, or if weight cannot be obtained, eg, mid-arm circumference, tricep skinfold thickness – monthly. • GI function and tolerance, ie, nausea/ vomiting, bowel function, eg, diarrhoea, constipation, abdominal distension – daily, then twice weekly. • Clinical condition and changes in management, eg, changes to medications, planned investigations (requiring fasting).


The initial goals should be continually reviewed to gauge progress and, depending on the clinical indication for starting a patient on ONS in the first place, there should be a plan to get them off the supplements in a timely manner. Targets that may be set for stopping the supplements include:11 • dietary intake sufficient to meet nutritional requirements; • target weight achieved; • healthy BMI; • change/improvement in medical condition; • non-compliance due for example to taste fatigue. CONCLUSION

Nutrient dense (but not necessarily nutritionally complete) ONS are often required when a patient is unable to meet their nutritional requirements from food alone. There is a wide variety of ONS available, therefore, the prescription of a successful ONS regime should be led by a suitably skilled dietitian, include a thorough assessment of the individual patient and a plan for the ongoing monitoring of its effectiveness, with an end goal in sight.



Continuing professional development To view our latest NHD CPD eARTICLE please visit NHDmag.com www.NHDmag.com June/July 2019 - Issue 145



LOW-PROTEIN FOODS: COSTEFFECTIVE PRESCRIBING Inherited metabolic disorders (IMD) of amino acid metabolism require life-long management with a low-protein diet.1 Prescribing of low-protein foods for dietary management of IMD is essential. This article reports on the issues surrounding cost-effective prescribing in England. Catherine Kidd Dietitian, Great Ormond Street Hospital for Children, NHS Trust, London Catherine is a Paediatric Dietitian, with acute clinical experience in a range of specialities including cardiology, oncology/ haematology, paediatric intensive care and metabolics.

REFERENCES Please visit the Subscriber zone at NHDmag.com

Catherine would like to acknowledge the metabolic dietitians team at Great Ormond Street Hospital for their contribution and review of this article.


IMD of amino acid metabolism include phenylketonuria (PKU), maple syrup urine disease, tyrosinaemia and homocystinuria. Together, natural protein restriction, L-amino acid supplementation and low-protein prescribed foods form the dietary management. Patients require an ongoing supply of low-protein foods to be prescribed by their GP. For patients with PKU, these foods can provide up to 50% of daily energy intake, add bulk to the diet and help with adherence by providing choice in a very limited diet.2 If these products are not prescribed, or provided in adequate amounts, then biochemical control and metabolic stability can be compromised, due to energy deficit and resultant catabolism. Good dietary management and biochemical control are essential to achieve normal growth and optimal neurological outcome in these IMD. THE SCOPE OF THE ISSUE IN ENGLAND

In England, it is estimated that around 10,000 patients attend metabolic clinics. Unfortunately, data is not currently available on the number of patients requiring a low-protein diet with prescribed low-protein foods.3 PKU is the most common diagnosis requiring a low-protein diet, with an estimated 2500 patients with PKU ‘on diet’ in the UK, with a further 60 to 70 new diagnoses per year.3 At our centre, around 220 patients (of which 180 have PKU), aged 0-18 years are on low-protein diets with prescribed low-protein foods. The overall cost of low-protein diets (low-protein food and L-amino acid supplement) to the NHS is estimated

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to be in the region of £12,000 to £18,000 per PKU patient per year, with costs varying according to patient age.1 Approximately 20% of this cost is attributed to food.1 Therefore, at our centre, low-protein food prescriptions for PKU patients alone may cost in the region of £480,000 to £720,000. Clearly, appropriate prescribing of low-protein food is essential in an increasingly financially pressured NHS. THE ROLE OF THE LONDON PROCUREMENT PARTNERSHIP (LPP) IN APPROPRIATE PRESCRIBING

The LPP is a membership organisation founded and funded by London NHS trusts, which supports the NHS to make the most of its purchasing power, so that it can maximise investment in patient care.4 The LPP has produced guidelines on appropriate prescribing of IMD, which clearly state that prescribed low-protein products are essential for the management of IMD patients, and interruptions to their prescription should be avoided, otherwise metabolic control may be lost.4 The LPP states that metabolic dietitians should monitor product usage and prescriptions. However, the LPP also states that metabolic products (including low-protein foods) should not be confused with areas suitable for prescribing review, and should be classified as ‘essential’ rather than ‘staple’ or ‘luxury’. THE ROLE OF THE ADVISORY COMMITTEE ON BORDERLINE SUBSTANCES (ACBS)

The ACBS is responsible for advising on the prescribing of nutritional and dermatological products for use in NHS

IMD WATCH Table 1: Recommended maximum number of units of low-protein foods to be prescribed for a patient with PKU dependent upon age2 Patient age 4 months to 3 years 4-6 years 7-10 years 11-18 years Adults Pre-pregnancy/pregnancy

Number of low-protein food units to prescribe/month 15 25 30 50 50 50

Table 2: The average price range and percentage of foods with prices available in the BNF, for 17 different lowprotein prescribed food groups Product type

Unit size

Bread loaves (n=6) Bread rolls (n=5) Pizza base (n=3) Pasta (n=28) Rice/couscous (n=5) Ready meals (n=12) Cereals (n=4) Flour mixes (n=6) Savoury mixes* (n=6) Savoury snacks (n=7) Egg replacer (n=4) Milk replacer (n=7) Dessert (n=15) Cake mixes (n=8) Biscuits (n=15) Breakfast bar (n=5) Soup sachets (n=4) Total n = 144

100g 1 x roll 1 x base 100g 100g 1 x meal 100g 100g 100g 100g 20g** 100ml 100g 100g 100g 100g Per sachet

Lowest price/£ £0.44 £0.85 £2.97 £1.26 £1.30 £2.15 £1.59 £1.20 £2.01 £1.96 £0.23 £0.21 £1.98 £1.50 £2.57 £3.76 £1.33

Median price/£ £0.87 £1.00 £4.30 £1.44 £1.45 £4.60 £2.44 £1.42 £5.32 £2.61 £0.46 £0.61 £2.56 £2.53 £3.89 £4.10 £1.33

Highest price/£ £1.07 £1.29 £4.31 £1.91 £2.15 £5.41 £2.44 £2.07 £6.17 £6.85 £2.16 £0.68 £5.40 £2.79 £6.68 £4.10 £1.33

% of foods within group with prices available in the BNF 33% (n=2) 40% (n=2) 33% (n=1) 75% (n=21) 40% (n=2) 58% (n=7) 0% (n=0) 33% (n=2) 0% (n=0) 71% (n=5) 100% (n=4) 71% (n=5) 40% (n=6) 75% (n=6) 27% (n=4) 0% (n=0) 0% (n=0) Mean = 49%

*Savoury mixes are defined as ‘sausage’ or ‘burger’ replacement mixes. primary care. The ACBS reviews applications for borderline substances made by manufacturers.5 Practically, this includes all ONS, enteral feeds and medically-prescribed foods, including low-protein foods and L-amino acid supplements for patients with IMD. When food manufacturers apply for ACBS approval for a new low-protein food product, they must state the price at which it will be available on prescription. The manufacturers are required to compare their product both nutritionally and economically to other similar products on the market and use this as a basis for their proposed price point. If a product is approved and the manufacturer wishes to bring the product to market, the ACBS will alert the

British National Formulary (BNF) of the product, including the price. However, the ACBS has no responsibility for content published by the BNF. THE ROLE OF THE NSPKU IN APPROPRIATE PRESCRIBING

The National Society for Phenylketonuria (NSPKU) has produced guidelines for the maximum number of recommended ‘units’ that a patient can be prescribed per month2 (see Table 1). This is based upon low-protein prescribed foods providing 50% of the energy requirements of the diet and, so, quantities will increase with patient age. An example of a unit is: 500g pasta, 500g flour, two pizza bases, one tub of egg replacer, or one packet of biscuits. www.NHDmag.com June/July 2019 - Issue 145


IMD WATCH These recommended maximum number of units per month can be helpful in preventing patients from being prescribed an excess of low-protein foods and may help limit cost of prescriptions. THE ROLE OF THE SPECIALIST METABOLIC DIETITIAN AND GP

At our centre, patients on low-protein diets with low-protein prescription foods are reviewed by a metabolic dietitian at metabolic outpatient clinics, when admitted as inpatients and by telephone when reporting blood results. Low-protein food prescriptions can be reviewed at any of these encounters. Metabolic dietitians from the specialist metabolic centre write to the patients’ GPs with prescription requests and clinical commissioning groups (CCGs) via GPs are then responsible for the ongoing prescription of all specialist dietary products.6 Prescriptions can be collected from local pharmacies, or patients can be set up with the delivery company provided by the food manufacturer. LPP recommends the latter option, to avoid ‘out-of-pocket’ expenses and prescribing or dispensing errors. At our centre, unfortunately, some patients report difficulties with obtaining their prescriptions for low-protein foods from the GP. This may be due to the following: • The rarity of IMD – some GPs will not be familiar with these products and may struggle to identify them on the formulary, or they will not be added to an electronic formulary used by the GP surgery. • Products often have to be specially ordered in by pharmacies, resulting in delays between a patient requesting the prescription from the GP and collecting it from the pharmacy. This gap in time could result in difficulty with dietary adherence when unable to obtain certain food items on prescription. Furthermore, the time delay between the order being placed by the pharmacy and the patient receiving the product, can sometimes result in the food item being stale and inedible by the time it is received. • In 2018, the Department of Health and Social Care launched a public consultation on gluten-free prescribing foods and following the outcome, many CCGs stopped prescribing what is described as ‘luxury’ food items (eg, 42

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biscuits, crackers) and will only prescribe ‘staple’ items (eg, bread, flour, pasta), or have stopped prescribing these products altogether.7 This led to some GPs also refusing to prescribe low-protein foods. However, gluten-free foods can be purchased from the supermarket, whereas low-protein foods cannot. Low-protein foods are exempt from this consultation and should continue to be prescribed.4 A REVIEW OF THE COST OF LOW-PROTEIN FOODS

To investigate options to improve cost-effective prescribing of low-protein foods, we collated a cost list of ACBS-endorsed products (n=147) produced by nine different food manufacturers. Prices were taken from the BNF (March-April 2019), and if not available, food manufacturer representatives were asked to provide the costs; the percentage of foods that had their costs listed in the BNF is shown in Table 2. Foods were, grouped into 18 categories (eg, bread rolls, pasta, rice) to allow like-for-like comparison of food prices. Prices were compared on a ‘per portion’, or ‘per 100g basis’ with the exception of egg replacer, where 20g approximately equals one heaped tablespoon. One category was labelled ‘other’ (containing cheese sauce mix, hazelnut spread and croutons); this group was removed from Table 2 as products were too different to compare. Prices ranged significantly for prescribed foods: bread loaves were the cheapest (median = £0.87/100g), whereas savoury (burger/ sausage) mixes were the most expensive (median = £5.32/100g). There appears to be a very high discrepancy between average prices for different types of foods, with some foods, such as biscuits and breakfast bars, costing the most on prescription. Discounting soup sachets, where all items were made by the same manufacturer, breakfast bars had the smallest price range, whereas egg replacers had the highest. It is unclear how such a high variation arises in products accepted by the ACBS, as manufacturers must compare their item nutritionally and economically to other comparable items when proposing them for approval. Prices were available for all low-protein foods, either from the BNF (49%) or food manufacturer representatives (51%). Egg replacer is the only food category to have 100% of its prices available in the BNF, whereas soup sachets, breakfast bars, cereals

IMD WATCH Table 3: The cost per prescription of using the cheapest and most expensive products in each of the five ‘ingredient’ food categories Food category Bread loaf Pasta Rice Flour mix Egg replacer Total cost of prescription

Cheapest item per unit £2.19 £6.29 £5.18 £5.98 £5.17 £24.81

and burgers/ sausage mixes had none of their prices available. When the ACBS approves a food, the price of the item should be made available to the BNF. It is not clear whether prices are not being made available by the food manufacturer, or not being published by the BNF. Lack of visibility of the price of food items is a barrier to cost-effective prescribing. It is time consuming to have to source the information from the manufacturer, particularly when new products are regularly being introduced to the market. Prices of products may change without notification. This all relies on the dietitian having to approach manufacturers for updates on product costs. IMPROVING COST-EFFECTIVE PRESCRIBING IN PRACTICE AT SPECIALIST METABOLIC CENTRES

There are a number of possible approaches to improving cost-effective prescribing of low-protein foods. Firstly, the cheapest items on prescription are the basic ingredients, such as flour mixes, whereas composite items, such as biscuits and breakfast bars, are more expensive. It may not be appropriate to limit prescriptions of composite items, as this removes the patient’s ability to use convenience foods where necessary. However, with cost in mind, encouraging use of basic ingredients and supporting families to cook is important. Many food manufacturers hold ‘low-protein cookery workshops’, which are a great tool for empowering families. Dietitians should always ensure that they discuss cooking skills, knowledge and facilities with families, so that families who enjoy and have the means to cook at home are supported to do so. Secondly, manufacturers could help with cost-effective prescribing by improving price transparency, making the information accessible to all healthcare professionals involved in prescribing low-protein foods. This would involve all prices being available in the BNF, rather than

Most expensive item per unit £4.26 £9.55 £25.80 £6.20 £10.81 £56.62

through food manufacturer representatives. Manufacturers could also ensure that there is better equity in pricing across comparable foods, so that patient choice is not jeopardised by efforts to improve cost-effective prescribing. Thirdly, we have collated a low protein food price list as mentioned above, containing 147 foods across 18 food categories, from nine different food manufacturers. This is designed to assist dietitians in our centre to give informed advice when working with families to request food prescriptions from GPs. This may be particularly pertinent for categories where all food items are similar (such as bread mixes), although may be less so where the flavour of products in the category varies (such as savoury snacks or desserts). Using a selection of common ingredient foods, we have demonstrated the vast difference there can be in overall prescription price, depending on whether foods chosen are the cheapest or most expensive foods within each category (Table 3). Food prices are represented per unit rather than per 100g, using the cheapest and the most expensive product per 100g; this is because products are prescribed on a per unit basis (ie, per bag of pasta rather than per 100g of pasta). CONCLUSION

In summary, it is essential to consider patient choice when requesting a prescription; always opting for the cheapest item in a food category may not be appropriate as this could limit patient choice in the context of an already restricted diet. As dietitians, we need to be conscious of promoting patient choice, whilst being mindful of the cost of lowprotein food prescriptions. This balance can be a challenge in clinical practice. Supporting families to cook at home and improving availability of and transparency in costing of foods may be an option to improve the future of cost effective prescribing of low-protein foods. www.NHDmag.com June/July 2019 - Issue 145


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TYROSINAEMIA Tyrosinaemias are a group of inborn errors of metabolism requiring lifelong pharmacological and dietary treatment. The main objective of dietary therapy is to provide adequate nutrition allowing normal growth and development while controlling blood tyrosine levels. This article explains the dietary principles and management of tyrosine disorders. Dietary manipulation includes a protein-restricted diet and protein substitutes. Tyrosine (TYR) is one of the 20 standard amino acids present in the body and used by cells to synthesise proteins. TYR is considered a conditionally essential amino acid, derived from the hydroxylation of phenylalanine (Phe) and the hydrolysis 1,2 of dietary or endogenous protein. TYR is either used to form proteins or degraded to products such as fumarate and acetoacetate by the body. This step process is demonstrated by the tyrosine degradation pathway (see Figure 1 on our website: www.NHDmag.com/tyrresources.html). There are five acknowledged tyrosine disorders where dietary input is integral to management. Table 1 provides an overview of these, including classification, enzyme defect, clinical symptoms, biochemical findings and management. TYROSINAEMIA TYPE I (HT-1)

• Birth incidence of approximately 1 in 100,000. Quebec, Canada has the higher prevalence due to the founder effect.4 HT-1 is not formally screened for on initial newborn screening in the UK. • HT-1 occurs due to a deficiency of the enzyme fumarylacetoacetate hydrolase (FAH) in the last step of the TYR degradation pathway (see Figure 1 online as before). • If HT-1 is not treated, toxins such as succinylacetone build up and

cause serious medical problems in the liver, kidneys and brain. • Clinical manifestations associated with HT-1 often vary greatly. Even when taking NTBC (2-[2-nitro4-trifluoromethylbenzoyl]-1, 3-cyclohexanedione), there are still important risks of longterm complications of HT-1, most importantly hepatocellular carcinoma. • Currently, liver transplantation is only considered in patients with acute liver failure (not responding to NTBC).5 • Pharmacological treatment NTBC (available since 19916) has greatly improved life expectancy. NTBC inhibits 4-hydroxyphenylpyruvate dioxygenase and prevents production of toxic metabolites below this enzyme step (FAA, MAA and SA) (see Figure 1 online as before). However, the drug does not prevent blood accumulation of TYR and Phe, therefore, dietary management is essential.7 DIETARY AIM OF TREATMENT

1 To optimise nutritional status. 2 To keep blood tyrosine levels within the recommended reference range (Table 2).

Harriet Churchill Specialist Dietitian National Hospital for Neurology and Neurosurgery. Harriet is working as a Specialist Dietitian at the Charles Dent Metabolic Unit, part of University College London Hospitals.

REFERENCES Please visit the Subscriber zone at NHDmag.com

To view Figure 1 and Table 3 related to this article, please visit www.NHDmag. com/tyr-resources. html).


Use of a protein substitute without Phe and TYR to provide sufficient protein, energy, vitamins and minerals The protein equivalent used needs to www.NHDmag.com June/July 2019 - Issue 145


CONDITIONS & DISORDERS be Phe- and TYR-free, but complete in all the other amino acids to prevent catabolism and to contribute towards protein requirements. There is currently a limited range available, including amino-acid-based powders and ready-todrink options. Currently, there is not a tablet or glycomacropeptide (GMP) option available in the UK. GMP has been popular within the PKU population and GMP-based protein substitutes for tyrosinaemia have recently become available in limited flavours in other countries worldwide, in the USA for example. GMP-based products are commonly perceived to be more palatable than those based on amino acids and thus provide an alternative option.12,13 The energy content varies between products and contributes to daily intake. Protein substitutes also include micronutrients. A restricted protein diet results in lower intakes of micronutrients such as B12, zinc, calcium and iron, as well as essential fatty acids. Intakes should be guided by dietary reference values (vary for age and gender) and an individual’s biochemistry. Barriers and behaviours affecting compliance in HT-1 have been identified in observational reports, but this has received little rigorous study.12 Reported dietary challenges include consumption of supplements for a myriad of reasons (eg, for taste, palatability, bad breath, gastrointestinal symptoms), their frequency and volume required. All of which can affect long-term compliance. The supplements should also be taken throughout the day to optimise metabolic control. Restriction of natural protein to maintain plasma TYR and Phe in the goal range Food choices are an important consideration for individuals with HT-1 and they need to follow a tailored diet to limit their TYR intake. An exchange system is used with 1 exchange = 1g protein (or an assumed 50mg TYR). The amount of exchanges recommended varies on an individual basis due to tolerance variability (affected by age, gender, health, pregnancy and growth). The diet is tailored to provide individuals with enough Phe and TYR to keep blood levels in range, to prevent muscle catabolism and to meet nutritional 46

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requirements. Adjustment over time is likely to be required during growth and pregnancy, for example. Restricting high-protein foods is essential (eg, meat, fish, eggs, cheese, milk, nuts and seeds). Naturally-occurring low-protein foods, such as, fruit, vegetables, fats and sugars, should form the basis of the diet. Thorough lists of food examples13 are provided with exchange amounts and social media channels post newer products and ideas. Table 3 (on our website: www.NHDmag.com/tyr-resources.html) illustrates some examples of foods providing one exchange.14 Prescribable low-protein food products are available in order to support energy requirements (to prevent muscle breakdown raising TYR blood levels), to provide bulk in the diet to prevent hunger and, consequently, to prevent individuals eating unsuitable higher-protein foods, as well as to ensure the diet has variability. Examples of products available include bread, flour mixes, pastas and milk substitutes. Low-protein products are not available to purchase in the supermarket and we would expect ~50% of an individual’s energy intake to come from these prescribed products.15 MONITORING

Individuals should be under the care of a metabolic team long term, to ensure metabolic and dietary aims are monitored. Adult monitoring varies depending on the individual’s engagement. Management recommendations for HT-1 were published in 2013,3 which include long-term and clinic follow-up recommendations as follows: • Ensure NTBC is dosed correctly and good compliance, essential to prevent serious complications, including acute liver failure and a neurological crisis.14 • Regular liver imaging every six months. • Regular clinic bloods, including amino acid profile, full blood count, liver function tests, urea and electrolytes, NTBC, as well as nutritional markers due to restricted diets, such as Iron, ferritin, vitamins A, B12, D, E, folate, selenium, zinc and copper.

CONDITIONS & DISORDERS Table 1: Overview of tyrosine disorders2 Disorder

Enzyme defect

Clinical symptoms (if unmanaged)



Tyrosinaemia type I (HT-1)

Fumarylacetoacetate hydrolase (FAH)

Severe liver failure, vomiting, bleeding, neuropathy, neurological crises, cirrhosis, hepatocarcinoma

↑urine and blood succinylacetone (diagnostic), ↑TYR, ↑MET (when liver disease has progressed)

Nitisinone (NTBC); Phe- and TYRrestricted diet (liver transplantation for select patients)

Tyrosinaemia type II

Tyrosine aminotransferase (TAT)

Corneal lesions, hyperkeratosis, neurological complications

↑↑TYR (blood and urine), ↑increased Phe, ↑urinary phenolic acids

Phe- and TYRrestricted diet

Tyrosinaemia type III and neonatal tyrosinaemia

4-hydroxyphenylpyruvic acid dioxy-genase (4-HPPD)

Impaired mental function, uncertain clinical relevance

↑TYR, ↑urinary 4-HPPA

Phe- and TYRrestricted diet; short term protein restriction in neonatal tyrosinaemia


4-hydroxyphenylpyruvic acid dioxy-genase (4HPPS); autosomal dominant mutation

Failure to thrive, acidosis, doubtful clinical relevance

↑urinary hawkinsin acetic acid (2-L-cysteineS-yl, 4-dihydroxycyclohex- 5-en-1-yl)

Phe- and TYRrestricted diet + vit C supplementation in infancy


Homogentisate oxygenase (HGD)

Arthritis, cardiac valve disease

↑homogentisic acid

Low-protein diet, possibly NTBC

Table 2: Target blood TYR and Phe levels Amino acid

Recommended plasma TYR level

Unaffected adult




• Psychometric baseline assessment and eye examination recommended. • Bone mineral density monitoring suggested due to restricted diet. • Dietary review to supervise necessary Phe and TYR restrictions. • We also offer individuals home monitoring between clinic visits through sending bloodspots in for Phe and TYR. Challenges faced with dietary monitoring • Recommendations include dietary restrictions to be continued indefinitely and should be carefully supervised – this relies on individuals engaging, attending

Recommended plasma Phe level


appointments and motivation. • Strict metabolic control to maintain tyrosine concentrations 200-400μmol/l is recommended until age 12; however, the safety of slightly increased concentrations is unknown, as well as increased levels when >12 years old.3 Keeping levels within target range can be challenging for individuals. Long-term follow-up studies to review target plasma concentrations of TYR and Phe are needed.3 • Raised CSF concentrations of TYR are associated with raised plasma TYR concentrations. The effects on the tryptophanderived neurotransmitters are not known.16 www.NHDmag.com June/July 2019 - Issue 145


CONDITIONS & DISORDERS • Low Phe concentrations may be damaging; if persistent, Phe supplements may be used to prevent catabolism and raised TYR levels. Diurnal variation of plasma levels is reported, so timing of any supplements should be considered and additional Phe

supplements may increase plasma TYR concentrations.17 • If poor dietary compliance occurs, micronutrients may be deranged and additional supplementation needed, requiring further adherence.

CASE STUDY EXAMPLE Background Divya has HT-1 which was diagnosed at age five. She is currently 25 years old, without children and works in IT. Her medical history only includes HT-1. Divya’s diet is: • low protein (not usually counting exchanges, but reports about 18); • prescribed protein substitute three times daily with poor adherence. Her TYR levels are usually between 600-900umol/L. Issues • Poor engagement with metabolic team. • Longstanding difficulty of taking NTBC and protein substitutes resulting in a recent neurological decompensation. • Divya’s diet became nutritionally inadequate since she was still following a low-protein diet without taking her protein substitutes. • Divya has limited menu options. • Prolonged hospital admission including rehabilitation. Low-protein diet with variability and tailored menus due to duration of admission, requiring enteral nutrition and transition back to oral intake and increase in exchanges as blood levels improved. The role of the dietitian • To promote nutritional status and minimise nutritional losses during recovery and rehabilitation. This included education from the multidisciplinary team about HT-1 and its management. • To collaborate with Divya to promote motivation and engagement with the restricted diet. • To work together to provide practical ways to follow the diet. • To educate through practical cookery sessions on how to follow the restricted diet and menu planning sessions for ideas. • To collaborate with psychological colleagues to try techniques to promote behaviour change to protein substitutes. Outcome for Divya • Divya is now discharged from her admission. • She reported taking her NTBC about three times per week which puts her at high risk of further neurological decompensation. • She is receiving ongoing psychiatry input for her aversion to protein substitutes and remains taking minimal, if any, per day. She is encouraged to take a multivitamin due to poor compliance. • She has so far attended her scheduled follow-up appointments, but blood TYR levels remain above target range. • Divya remains on a relatively low-protein diet, as she is not taking her substitutes, however, she is unlikely to meet her nutritional requirements, therefore, remaining at high risk of micronutrient deficiencies and requiring bone mineral density scanning. CONCLUSION

Dietary treatment remains integral to the overall management of HT-1. Adherence to and engagement with dietary and pharmacological treatment is critical to reduce the risk of complications, such 48

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as, neurological decompensation and hepatic complications. HT-1 has a limited evidence base and a low incidence. However, it is clear that good outcomes involve regular monitoring and compliance with lifelong management.


FACE TO FACE Ursula meets: JENNY ROSBOROUGH Head of Nutrition at Jamie Oliver Limited Public health nutrition campaigner Health behaviour changer

Jenny is a sensible SENSE nutritionist (www.sense-nutrition.org.uk). We agree that SENSE is a great network of contacts to recalibrate the more extreme and bizarre streams of nutrition debate flowing through social media channels. “Nutritionists who post their every perfect meal do need to be careful. It has potential to make some people feel inadequate, which is not a helpful way to get normal people motivated to improve their diets,” said Jenny. As a never-poster of my imperfect meals, I was in complete agreement. Her initial degree was in Sports Science and English at Loughborough University. Some anxiety of “what career?” led her to do the Masters Nutrition degree at Kings College, London. “It was really intense, but really worth it,” she enthused. After qualification in 2007, she became a personal trainer at a Virgin Active gym. During this time, one of the gym customers asked if she was available to help with the nutrition sections of a health programme for children with obesity. Saying yes, was the “best thing” she could have done, as it opened up the many opportunities she then enjoyed with the MEND programme (Mind, Exercise, Nutrition . . . Do it). Initially, Jenny helped to deliver the MEND programme to local groups around the UK. Shortly after, she moved to the MEND head office and developed the family guidance programme for children aged five to seven years (to complete the guidance already in place

Ursula meets amazing people who influence nutrition policies and practices in the UK. for children two to four and seven to 13 years.) “It was such a great scheme and helped to support the national childhood measurement programme. It was a great frustration for many parents to be told their child had obesity, but not to be given any support,” said Jenny. In 2013, the MEND scheme faced severe challenges due to changes in the funding of public health programmes. The UK section rights were sold to Mytime Active, and the US and Canadian rights were sold to Healthy Weight Partnership Inc. Jenny joined the latter and for two years supported paediatric healthy lifestyle groups in North America. It must have been a real challenge for a UK nutritionist, I suggested. “Yes, there are differences between American and British food cultures. But there were also large differences between US cities. Whilst lifestyle changes, like walking to school, were possible in Chicago, it was completely impossible for children to walk to school in many towns in Texas, for example.” (Too hot and no safe pedestrian routes.) ‘Soul food Sundays’ – weekly community meals after church on Sundays – were also a new cultural experience for Jenny. Then a London-based job advertisement allowed Jenny to escape airmiles and jet-lag. Action on Salt, a health charity based at Queen Mary University in London, had been instrumental in instigating the reformulation of many foods by incremental reductions in salt content. They now wanted to expand their activities to use the same

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.

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PUBLIC HEALTH contacts and concepts to support sugar reductions. In 2015, free sugars became the most discussed nutrient, because the UK Scientific Advisory Committee on Nutrition (SACN) released their report on carbohydrates, recommending a halving of maximum sugar intakes from 10% to 5% dietary energy. “The job was about relationship building. With food companies, health organisations and campaigners, media and government,” said Jenny. The topic was sugars, but the real theme was childhood obesity. The media were keen to support descriptions of the wide variance of the sugar content of different foods and brands, and the government developed firmer and stronger pressures for reductions in sugars in most daily-choice foods. Taxation and targets have provided strong influence in supporting reformulation and the next few years will reveal to what degree these interventions have resulted in improving children’s diets. Jenny enjoyed the variety of challenges she faced as a nutrition campaigner. “I learnt that success is progress rather than perfection.” But there were differences between salt and sugars reformulation. The latter can be more difficult because sugars provide bulk for many products and because sweet foods are often associated with caring, comfort and celebration. Jenny feels that much more needs to be done to communicate less frequency and smaller portions for sweet foods, especially where reformulation is difficult. So many occasional treat foods have become daily snacks; and we both ponder the delicate issue of critiquing

Jenny giving a talk for Action on Sugar in 2016

Bake Off enthusiasts who are all jolly and kind and funny (and promote consumption of huge amounts of sugar). Then her head was hunted. Jamie Oliver needed a Head of Nutrition and in 2018, Jenny joined the company. She has three nutrition colleagues and together they work across the restaurants, in product development, recipe book checking, campaigns, media contacts and relationships with governments, industry and health groups. Does she meet the boss daily, or weekly, or monthly? I asked. “He is there most days. He is very involved in all aspects and decisions and he is just like he appears on TV. He is always so busy: I don’t know how he does it,” said Jenny. A new consultancy role she has just accepted is as advisor to Transport for London, to advise on their ‘no foods high in salt, sugars, or saturates’ advertising policy. Does Jenny have the most exciting nutritionist job in the UK? I think so. I know that she really enjoys her career as a campaigning nutritionist. And her advice to younger nutritionists? Get paid to do the thing you love to do.

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ONE CHAPTER CLOSES, THEN ANOTHER ONE OPENS Iâ&#x20AC;&#x2122;m excited to let you know that I have started a new role as the dietitian advisor to the Galactosaemia Support Group (GSG) in the UK. This fits nicely with my three-daysa-week job in adult metabolics and I am very much looking forward to getting stuck into it! But, as I start my new role, we must not forget the dietitians who have worked so hard in the years beforehand to improve the diet for people with Galactosaemia. Pat Portnoi had been the society dietitian for 21 years before she retired this May. When she started the job, she was also working as a dietitian at SHS Ltd. Pat worked as a director at SHS and SHS Australia in the early years before it was taken over by Valio and then finally Nutricia, where she was head of metabolic nutrition for several years. She helped develop new products for metabolic disorders and worked closely with the UK and worldwide metabolic dietitians. In 2004, she left her post at Nutricia and concentrated more on the Galactosaemia dietitian role. One of her first jobs was to produce a national diet information sheet for Galactosaemia, as each hospital was using their own version. Another large job was producing the lactose-free lists [for Galactosaemia] of manufactured foods and baby foods. There was a government grant to help with this massive task, as it was before the labelling legislation. A major change to the Galactosaemia diet over the years has been the addition of hard cheese. In 2000, Pat organised the first analysis of cheese for its lactose content. Working closely with Prof Anita MacDonald from the Birmingham Childrenâ&#x20AC;&#x2122;s hospital, they were looking for cheese with a galactose content of

Louise Robertson Specialist Dietitian Louise is an experienced NHS dietitian who has been specialising in the fascinating area of Inherited Metabolic Disorders in adults for the last 10 years. In her spare time she enjoys running her blog Dietitian's Life with her colleague and good friend Sarah Howe. www. dietitianslife.com

less than 10mg per 100g (this has now been relaxed to 25mg/100g in the new Galactosaemia international guidelines [Welling et al 2017]). Over the years, they organised 14 different analyses and we now safely allow a variety of cheeses in the diet for Galactosaemia. Testing was also organised for butter, oil and ghee and they found them to be low enough as well. This has opened up the diet considerably for patients. All the cheese research had been supported by the GSG charity. More recently, Pat has been involved with the development of the TEMPLE (Tools Enabling Metabolic Patients Learning) books, which are a great resource for parents whose child has just been diagnosed with a metabolic disorder. The first job that Pat has handed over to me is to update the Galactosaemia diet sheets, then maybe to look into any more cheeses and their galactose content to see if we can safely allow other options. I am also hoping to promote the Happy retirement Pat GSG across social media and provide and provide more information to support patients and their families. Happy retirement Pat and thank you for all your hard work for the people and families of those with Galactosaemia. To find out more you can find the Galactosaemia Support Group at www. galactosaemia.org. www.NHDmag.com June/July 2019 - Issue 145


GIVE THEM A LITTLE TASTE FOR ADVENTURE. Not only does it taste fantastic, PaediaSure Compact packs balanced paediatric nutrition (and 27 years of PaediaSure experience) into just 125 ml. And it comes in three great-tasting flavours.*1,2 How else could they reach Neptune?


*Vanilla, strawberry and banana

REFERENCES 1. Data on file. Abbott Laboratories Ltd., 2017 (Sensory research and evaluation: PaediaSure Plus vs. PaediaSure Compact). 2. Data on file. Abbott Laboratories Ltd., 2017 (Sensory research and evaluation: PaediaSure Compact banana flavour and PaediaSure Compact strawberry flavour). Date of preparation: May 2018 ANUKANI170158c

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