Network Health Digest - March 2018

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

NHDmag.com March 2018: Issue 132

FALTERING GROWTH: NICE guidelines CARE HOME NUTRITION CLINICAL RESEARCH DYSPHAGIA: CURRENT PRACTICE IMD: PRESCRIBING CHALLENGES

Nutrition & Hydration Week page 23-25

7 Red Flag Indicators for when to use an AAF

1. INFANTS SYMPTOMATIC ON AN EHF 1-5 2. FALTERING GROWTH 1,4,5,7 3. ANAPHYLAXIS 5,6 4. SEVERE GI SYMPTOMS 1-6* 5. SEVERE ECZEMA 1-5,7* 6. MULTIPLE FOOD ALLERGIES 1,3,7* 7. INFANTS SYMPTOMATIC ON BREAST MILK 1-5,7*

* in association with faltering growth or symptoms persisting on an eHF1,2

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Neocate: The UK’s No. 1 Amino Acid-Based Formula References: 1. Meyer R, Groetch M, Venter C. J Allergy Clin Immunol Pract 2017.09.003 2. Venter C, Brown T, Meyer R et al.Clinical and Translational Allergy 2017, 7: 26. August 2017. 3. Koletzko S, Niggemann B, Arato A, et al. J Pediatr Gastroenterol Nutr 2012; 55(2):221-229. 4. Venter C, Brown T, Shah N, et al.

Clinical and Translational Allergy 2013; 3(1):23. 5. Ludman S, Shah N, Fox A. BMJ 2013; 347-355. 6. Fiocchi A, Brozek J, Schünemann H, et al. WAO J 2010; 3:57-161. 7. Hill DJ, Murch SH, Rafferty K et al. Clin Exp Allergy 2007; 37(6):808-822. 8. De Boissieu D, Matarazzo P, Dupont C. J Pediatr 1997; 131(5):744-747.

9. Vanderhoof JA, Murray MD, Kaufman S et al. J Pediatr 1997; 131 (5):741-744. 10. DeBoissieu D, Dupont C, J Pediatr 2002; 141(2): 271-273.

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FROM THE EDITOR

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

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

Welcome to the bumper March issue of Network Health Digest. Like a coiled spring, we are ready to bounce into action with a reserve of new information and ideas to share with you this month.

In the world of Paediatrics, NICE has recently published new guidelines for the recognition and management of faltering growth in children, providing important recommendations that Paediatric Dietitian, Jacqui Lowdon reports on in our Cover Story, highlighting key points for updating current practice. At a time when cost savings via appropriate prescribing is a hot topic for many who work in the health service, Martha Hughes, Scientific and Regulatory Executive of the BSNA, takes a look at specialist infant formula and the essential need for prescriptions to be maintained.

Prescribing challenges feature in our IMD Watch this month too, as NSPKU’s Suzanne Ford focuses on the current situation and potential solutions for prescribing appropriately in Metabolics, particularly in PKU. March sees the annual return of ‘Nutrition and Hydration Week’, from 12th to 18th, showcasing fundamental aspects of social care - and there’s still time for you to get involved. Turn to page 23 for more details. N&H Week goes a long way to promote awareness of malnutrition and elderly care. With that in mind, Gill Hooper and Joanne Holmes discuss the value of foodbased activity and person-centred care for older people in care homes,

while Amanda Mostyn provides an overview of dysphagia and its link with malnutrition, including a the implementation of the new International Dysphagia Diet Standardisation Initiative (IDDSI) framework.

“Research is an excellent string to a dietetic bow,” says Kaylee Allen, as she shares her experiences with us in clinical research and how to get started!

“Research will boost your learning and development, benefit your patient groups and promote dietetics within your remit.” An example of this comes from Kerry Mcleod RD and Myra Mackenzie RD, from Robert Gordon University who summarise the results of their recent research survey evaluating the dietetic treatment experiences of individuals with a history of an eating disorder (ED). It makes for interesting reading for any dietitian, especially those working in the field of ED. A new feature from Alex Gazzola, Freelance Journalist, provides us with a roundup of news and product launches in the ever-growing world of ‘free from’ and low-FODMAPs; and don’t forget our regular features too, including Dietitian’s Life and Ursula Arens’ Face to face, this month with Joan Gandy.

A March full of great reading. Enjoy!

Emma

www.NHDmag.com October 2017 - Issue 128

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CONTENTS

15 COVER STORY Faltering growth: NICE guidelines

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News

8

Face to face

Latest industry and product updates

With Joan Gandy Editor and Dietetic Researcher

31 CARE HOMES Person-centred care 35 Dysphagia

An update on current practice

11 DIETITIANS IN EATING DISORDERS A pilot study 19 Specialist infant formula

The need to maintain prescriptions 23 Nutrition and Hydration Week

12th-18th March: an overview

27 MALNUTRITION Causes in older adults

42 FREE-FROM BITES News and product updates 45 IMD watch

Prescribing challenges in PKU 51 Clinical research

Developing a research career 54 Events & courses

Dates for your diary 55 Dietitian's life

by Louise Robertson

Copyright 2018. All rights reserved. NH Publishing Ltd. Errors and omissions are not the responsibility of the publishers or the editorial staff. Opinions expressed are not necessarily those of the publisher or the editorial staff. Unless specifically stated, goods and/or services are not formally endorsed by NH Publishing Ltd which does not guarantee or endorse or accept any liability for any goods, services and/or job roles featured in this publication. Contributions and letters are welcome. Please email only to info@networkhealthgroup.co.uk and include daytime contact phone number for verification purposes. Unless previously agreed all unsolicited contributions will not receive payment if published. All paid and unpaid submissions may be edited for space, taste and style reasons.

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

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Advertising Richard Mair Tel 01342 824073 richard@networkhealthgroup.co.uk Phone 0845 450 2125 (local call rate) Fax 0844 774 7514 Email info@networkhealthgroup.co.uk www.NHDmag.com www.dieteticJOBS.co.uk Address Suite 1 Freshfield Hall, The Square, Lewes Road, Forest Row, East Sussex RH18 5ES

www.NHDmag.com March 2018 - Issue 132

@NHDmagazine ISSN 2398-8754

NHD0318

NEWS

FOOD FOR THOUGHT

Dr Emma Derbyshire Independent Consultant Emma heads up Nutritional Insight Ltd, an independent consultancy for industry, government and communication industries. She is also the Co-Founder of LittleFoodie.Org. www.nutritionalinsight.co.uk @DrDerbyshire

References 1 www.gov.uk/ government/news/phelaunches-change4lifecampaign-aroundchildrens-snacking 2 www.nutritional-insight. co.uk/wp-content/ uploads/2017/05/ Toddler-snacksproof.pdf 3 Shriver LH et al (2018).

Contribution of snacks to dietary intakes of young children in the United States. Matern Child Nutr 14(1) 4 Rehm CD and Drewnowski A (2017).

Replacing American snacks with tree nuts increases consumption of key nutrients among US children and adults: results of an NHANES modelling study. Nutr J 16(1):17

HEALTHY SNACKING UNLEASHED It was great to see and hear right at the start of this year that children’s snacking habits were getting a crunch. Unhealthy snacking amongst children has become more of an everyday reality rather than an ‘occasional treat’.

Government data1 shows that UK children are consuming at least three unhealthy snacks and sugary drinks a day, with around a third consuming four or more unhealthy snacks daily. The campaigns that we have seen are mainly due to concerns that current snacking habits are pushing children’s sugar intake up - to levels three times higher than recommended.

In an earlier paper that I wrote and published in NHD last year, it was clear that supermarket foods targeted at children are ‘over sweet’.2 Of the 98 toddler snack products identified, half were fruit-based snacks and sweet biscuits, 17% rice cakes, 15% crisps or puffs, 13% were bars, 6% vegetable-based snacks and 5% crackers or breadsticks. A recent analysis of snacks targeted at young children in the US showed that snacks accounted for 28% energy intake and 39% of added sugars.3 So, we can see from this that a market shift away from sweetness is needed.

The new Change4Life campaign encourages parents to look for ‘100 calorie snacks, two a day max’, to help them buy healthier snacks than those they currently go for. Whilst this is a useful benchmark, it also needs to be reiterated that this does NOT apply to fruit and vegetables. The advert is aimed at parents and can be confusing to children - it needs some explaining if they see it.

Nuts for kids?

Key messages beyond two 100kcal daily Interesting research in the States4 snacks daily has modelled the nutritional impact • Fruit and vegetables do NOT count and can of swapping usual snacks with tree be eaten as snacks throughout the day. This nuts - that’s nuts such as cashews, is important as, in reality, children can be almonds, pecans and walnuts to us. relentlessly hungry.

Using data from 17,000 children and • We should be advising parents to limit adults taking part in the National children’s exposures to ‘sweetness’ alongside Health and Examination Survey calorie monitoring.

(NHANES) all between-meal • We also don’t want our children to start calorie snacks (not including beverages) counting. The message should be to limit were replaced on a per calorie basis, intakes of refined, ultra-processed snacks and drinks, not necessarily to focus on calories. with nutritional data for tree nuts.

• The ‘right’ snacks can provide a valuable It was found that diets became source of nutrients for children. significantly lower in empty calories, added sugars, saturated fat and sodium. Intakes of oils, mono and polyunsaturated fats, plant omega-3s, magnesium, potassium and dietary fibre were also all given a boost. So, this research confirms that replacing between-meal snacks with tree nuts such as almonds could be a suitable snack for children and could provide a nutrient boost.

So, in a nutshell, let us educate parents and those involved with children to give them healthy unrefined foods that are naturally lower in calories. The message also needs to go beyond the context of the supermarket - to schools and grandparents when snacks and treats are often used as a form of or reward or enlightenment. And yes, in these situations, it quite often goes beyond the two a day!

Dr Emma Derbyshire and Charlotte Stirling-Reed are the Co-Founders of LittleFoodie.Org. This Organisation has been established to provide parents and carers of children with Expert Advice on early years’ nutrition. Fact sheets are available through the website and regular forums will be held. Visit www.littlefoodie.org for more information.

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www.NHDmag.com March 2018 - Issue 132

NEWS GLUTEN-FREE FOOD TO REMAIN ON PRESCRIPTION Following a consultation which took place throughout 2017, the Department of Health and Social Care recently announced that access to gluten-free breads and flour mixes on prescription in England would be retained.

Many patients, healthcare professionals and Coeliac UK feel that this is a positive outcome for people with coeliac disease, a lifelong autoimmune disease, which requires ongoing support to achieve effective management.

Health Minister Lord O'Shaughnessy has said, “We have listened to the views of the public and experts and these changes will mean that patients in England, including people on lower incomes, can still access basic gluten-free foods on prescription - and at the same time, we are delivering savings of £4 million per year for the tax payer. These savings will be put back into the NHS front line.”

Coeliac UK will support the development of the final regulations following this decision, pledging to ensure that the final outcomes are ‘adequate in enabling patients with coeliac

disease, especially the most vulnerable, to adhere to the diet and manage their condition.’

There is, however, still some concern with regards to prescribing practices at local level, despite this national level decision. Many Clinical Commissioning Groups (CCGs) have already removed access to gluten-free foods on prescription. Coeliac UK have responded: “We will be working hard to make sure individual CCGs fulfil their obligations to manage the health of their patients with coeliac disease, particularly those most at risk of being unable to maintain a gluten-free diet.”

More information can be found at www.gov.uk/government/ consultations/availability-of-gluten-free-foods-on-nhsprescription#history

NHS PRIORITIES FOR 2018-19: EXTRA FUNDING PROVIDED BUT WHERE IS IT GOING? In November last year, the Chancellor will go directly to CCGs, with the remaining announced in his budget, some good news for money being shared between sustainability the NHS: an additional £1.6 billion of funding funding and other direct commissioning in 2018-19, with an extra £540 million added pressure areas, co-ordinated by NHS for the Department of Health and Social Care. England.

In reality, this equates to a 2.4% growth in Aims for reduced A&E waiting times, funding for NHS England, which is slightly transfer of care times and length of hospital higher than 2% in 2017-18. Nevertheless, this stay have all been revised or amended. falls far short of the historical average of 4% All the previous pledges on mental health, growth. cancer, primary care, maternity and learning The announcement has triggered new disability remain, with the guidelines on planning guidance issued in February this year mental health being reinforced, where every

by NHS England, with some key changes to CCG must now meet the Mental Health how the money is spent, how performance is Investment Standard, which states that managed and reforms in the service focusing on spending on mental health must increase how best to achieve integrated and continuity faster than their patient allocations. Referralof care. to-treatment waiting times are also reviewed In the past, the majority of extra funding and the NHS should look to halve the number from a budget announcement was spent on of patients waiting longer than 52 weeks for additional primary care resources and by treatment by March 2019.

Clinical Commissioning Groups. However, Full details can be found at this time round, approximately £600 million www.england.nhs.uk/publication/ refreshing-nhs-plans-for-2018-19/ www.NHDmag.com March 2018 - Issue 132

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F2F

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

If you would like to suggest a F2F date (someone who is a ‘mover and shaker’ in UK nutrition) for Ursula, please contact: info@ network healthgroup. co.uk 8

Ursula meets amazing people who influence nutrition policies and practices in the UK. JOAN GANDY Editor Dietetic Researcher

We arranged to meet at the British Film Institute at London's South Bank.

The tearoom was full of arty types: interesting hair tints, retro spectacles, funky tweeds. All iBalls glued to iPhones and iFingers tap-tap-tapping on iPads. Joan is interesting, but not in an arty way: rather a smarty way. And it was a great privilege to share coffee and conversation with her.

For various reasons, including too much partying, her A-level results were very disappointing and the conditional offer of studying Dietetics disappeared.

She entered the life of work. Firstly as a laboratory technician, when she obtained an Ordinary National Certificate.

She then moved away from science completely and worked in the housing department of a local authority.

Joan attributes her sudden inspiration to have a second shot at going to University to Cosmopolitan magazine.

“There was a feature on education. It said that you could go to University at any age - this was a revelation, and I immediately started my new life-plan,” said Joan. She had read the magazine article in March and that September, after various letters and school references had been supplied, she started the Dietetics course at Surrey University.

Student-Joan really enjoyed her placements. “It was at this time that I fell in love with research,” she said. She had an interest in nutrition in developing countries and was fortunate to do her placement at the London School of Hygiene and Tropical Medicine

www.NHDmag.com March 2018 - Issue 132

(LSHTM). During this time, she met many ‘nutrition greats’ (including Jeya Henry, John Waterlow, John Rivers and Prakesh Shetty). She also enjoyed the research encounters at her clinical placement at Bart’s Hospital. Did she not enjoy the helping-people part of student dietetics, I wondered? “Mostly yes,” said Joan. Despite the strong memory for her of the less pleasant aspect of cleaning floors and a patient’s body after an episode of steatorrhea.

Joan graduated in 1981. But dietetic jobs were in short supply and various applications got a ‘no-thanks’ response.

Her first post was as a research officer at the Royal Postgraduate Medical School, researching gut hormone in non-insulin dependent diabetes (mature onset diabetes - now called Type 2 diabetes).

She also became involved in laboratory aspects of research on somatotropin.

A job advertisement for a research assistant to obesity researcher John Garrow was just what Joan had been waiting for. “I didn’t think I stood a chance of getting the job, so made the most of the encounter by asking lots of questions and challenging him. I later learnt that that was why I’d got the job,” said Joan. The three-bedded research unit in Harrow was funded by the Medical Research Council and Joan was involved in many studies measuring body composition and energy expenditure in obesity, using indirect and later, direct calorimetry.

“Not many people now know that John Garrow did the laboratory validation of

‘loveresearch’

“Dietitians must use evidence-base, but just as importantly, must contribute to it.”

the BMI cut-offs.” Joan clearly has huge respect for Prof Garrow, and is very keen to share that he was a great champion for the dietetic profession: he attended and spoke at many dietetic meetings and always encouraged dietitians to do research.

In 1989, Joan completed her PhD on weight loss in obese women. She then did some further research in Harrow in the department of anaesthetics, looking at the effects of anaesthesia and surgery on protein and energy metabolism.

“We looked for different ways to reduce this stress, including feeding patients earlier than was usual practice. Unsurprisingly, patients recovered more quickly,” said Joan.

In 1994, Joan ventured back into clinical dietetic work. “I worked a lot with compulsive eaters and with anorexics and bulimics. I really enjoyed working with disordered eaters, but I was not always confident I could support them with behavioural aspects of their problems,” confessed Joan.

In later years of employment, Joan has worked as a researcher and lecturer at various universities, including Oxford Brookes and Westminster. Most recently, she was a member of the Need for Nutrition Education Project (NNedPro) team, a collaboration between dietitians and doctors in medical education.

In parallel with her research and lecturing career, Joan has been a very active member of the BDA. She chaired the BDA’s Research Interest Group and was the first Research Officer. This involved planning the research element of meetings and conferences and being the supportive mentor to any dietitians thinking about, or actively involved in, research. “You can do it!” was always on Joan’s lips. Last year, she was also a member of the scientific programmes committee for the European Federation of the

Associations of Dietitians (EFAD)…which leads to the editor-hat she currently wears.

From October 2006 to February 2011, Joan was editor of The Journal of Human Nutrition and Dietetics, which at the time was a printed bimonthly and sent to every member of the BDA. “I wanted dietitians to feel that they had more ownership of their journal, so I encouraged them to submit their work and published more of the original communications from BDA conferences.

We rebranded the cover in the BDA colours too.

The impact factor increased, along with article submissions, which helped put it onto a firmer basis,” said Joan. There was no salary and hours were long on top of her full-time job. But, for Joan, it was the best way she could think of to actively support dietetic research.

Her next and current editor role is for The Manual of Dietetic Practice (MDP). She was on the interview panel, but ‘somehow’ the editorial baton for the fifth edition was handed to her. The biggestyet tome was just a sliver short of 1,000 pages and over 5,000 copies have been sold. “Everyone has been very supportive, including all the BDA specialist groups. More than 200 people contributed including students and professors!” said Joan. She did say “never-again” when MDP was published in 2014, but obviously not loud, or often, enough and she is currently doing final checks to the sixth edition, which is due before the end of 2018. (BDA: please fete this with glamour and glitter - it deserves trumpet blasts and flying champagne corks).

I was keen to invite Joan to another beverage (knowing her current professional interest is hydration at population level). But she had to zoom off: she repeated the phrase ‘love-research’ and finished with the thought that research was for the many, not the few. “Dietitians must use evidencebase, but just as importantly, must contribute to it.” www.NHDmag.com March 2018 - Issue 132

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NHD and British Lion eggs Competition Write an article for the chance to win £250 in shopping vouchers!

Network Health Digest (NHD) and British Lion eggs, would like your original research reviews on the role of eggs in the diet. We are looking for fully referenced articles discussing the role and implications of eggs as a nutrient provider to different population groups and/or life stages. Suggested topics include the role of eggs in the context of: sport and fitness, pregnancy and early life, satiety and healthy ageing.

The best two articles will be published in NHD later this year and the two winning authors will each win shopping vouchers worth £250.

Deadline for submission: Friday 6 April 2018.

All entrants will be judged by NHD Editor and Registered Dietitian Emma Coates, along with Dietitian and Health Writer, Dr Carrie Ruxton.

NETWORK HEALTH DIGEST

Please email info@networkhealthgroup.co.uk for a ‘Contributor template’ and further guidance on submissions.

RESEARCH

DIETITIANS IN EATING DISORDERS: A PILOT STUDY Kerry McLeod RD Member of the BDA Specialist Mental Health Group & Beat Ambassador Kerry currently works for Child and Adolescent Mental Health Services in Aneurin Bevan University Health Board, where she is responsible for the dietetic management of young people with eating disorders attending the Intensive Treatment Programme.

Dr Myra Mackenzie Lecturer in Nutrition and Dietetics, Robert Gordon University Myra has been a lecturer in the School of Pharmacy and Life Sciences at RGU since 2009. Her research interests include the role of the dietitian in promoting nutritional care in vulnerable groups, food security and community engagement.

Eating disorders (EDs) are serious mental disorders with high levels of physical and psychological comorbidity, disability and mortality.1 Dietitians possess a range of skills and knowledge, including nutrition, sociology, physiology, psychology and behaviour change. They are involved in the assessment, treatment and monitoring of clients with EDs,2 within multidisciplinary teams, helping patients to improve their relationship with food, as well as educating other clinicians.2 Publications on dietetic practice in the area of EDs are often descriptions of practice, excluding the perspectives of service users.3 Qualitative studies in EDs demonstrate the importance of individualised treatment interventions and the therapeutic relationship in recovery.4 We report here a pilot study that evaluates the dietetic treatment experiences of individuals with history of EDs. We invited a group of participants aged ≥18 years old, who had received dietetic treatment for an ED but were no longer receiving ED treatment, to participate in an online questionnaireRESULTS

All participants were female and the majority <40 years old (n 12). Most participants had anorexia nervosa (n 12) followed by Eating Disorder Not Otherwise Specified (n 1).

Participants’ views of dietetic input Most participants reported that their views on dietetic input changed throughout treatment: “At the start, naturally, I disliked my dietitian - my anorexia told me she just wanted to make me fat.”

“At the beginning of treatment I didn’t see the need for dietetic input, but towards the end I could see the benefits.”

They felt that the dietitian had a good understanding of their condition, but lack of experience in EDs could present difficulties:

led survey. The study was advertised via the Beat website, research newsletter and social media. Respondents (n 18) were sent information sheets and consent forms via email; 13 study participants remained.

Ethical approval was given by The Robert Gordon University School of Pharmacy and Life Sciences Research Ethics Committee and approval for the study was granted by the Beat Research Officer.

Responses were examined and a thematic analysis carried out. An essentialist approach was taken (i.e. the language used reflects meaning and experience).5 “One of the locums I saw said some really triggering and unhelpful things due to not really knowing me or misinterpreting things I said.

They also seemed to have some very stereotyped views about people with EDs which came across as patronising and dismissive - I don’t think they had experience of working in this area.”

See the person, not the disorder “It felt like she’d seen the label of anorexia and tried to help treat that.

I didn’t feel like she listened to me or treated me as an individual.”

“Concerns [were] frequently dismissed as symptomatic of the eating disorder, as though that was a reason to disregard them, rather than address them.” www.NHDmag.com March 2018 - Issue 132

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RESEARCH Participants frequently commented on how they felt when concerns were not dealt with appropriately: “I was very open about how I felt, my thoughts and feelings, however, I do not think these were challenged in an appropriate way, and ended up making me feel worse about myself…I felt my irrational ideas were shrugged off as something I could just ‘get over’ rather than addressed. At times I felt ignored.”

Some participants did not feel that their food rules/rituals were explored or challenged appropriately. One participant explained the necessity of challenging ‘feared foods’ and the potential consequences of not doing so: “I often went several weeks at a time without any input…this impacted on my ability to sustain or make changes…mainly due to feeling unable to challenge my fears/thoughts well enough myself.”

“Working through a feared food list, I felt the changes I was expected to make were not achievable in the short time frame she had set… more time should have been taken.”

Trust is important Several participants commented on the importance of trust; one participant stated that it was ‘crucial’ in recovery: “[We] built up a lot of trust over the years… it took a lot of repetition for me to realise that a lot of the things they were telling me DID make sense, or apply to me - and to be able to use their support to make lasting changes.”

Collaboration vs battles Participants favoured a collaborative approach to treatment: “She let me pick foods I liked and worked with me to make meal plans that I felt I could manage, actually enjoy to an extent.”

‘Controlling’ dietitians led some to rebel: “At times when I didn’t feel listened to, this would result in me completely going against what she was advising me to do. I think there needs to be a mutual respect with the dietitian and the patient. If there’s not, then I don’t think it will benefit the patient at all.”

“Arbitrary rules or requirements and a lack of flexibility led me to want to reject everything the 12

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dietitian had to offer…[The patient and dietitian] are frequently pitted against one another rather than working collaboratively towards the same goals. A refusal to compromise and empathise led to increased resistance.”

In contrast, when asked what was most helpful during the intervention, one of the participants reported: “Getting the control taken away I guess. I hated it but I needed it.”

Implementing advice Several participants reported that they already knew much of the information, but experienced difficulty in implementing it: “A lot of the info I did know already, about food groups and energy balance. I just couldn’t put it into practice and wasn’t given any help with this.”

“I knew what I needed to do, so didn’t need information/instruction, but support in implementation.”

Participants recognised the importance of current knowledge: “It didn’t appear to be rooted in evidence-based practice, or make use of the science that points towards ways in which diet could have been used to alleviate other symptoms/side effects associated with my ED…They don’t want to offer hard or factual dietary advice in fear of exacerbating the patient’s fears or obsessions surrounding food… dietary education, empowerment and knowledgemobilisation needs to take place when working with ED patients.”

Several commented on the importance of language during nutritional education: “My outpatient dietitian was an amazing role model in the way she talked about food…she’d talk more in terms of nutrients and protein rather than calories and fat, which was amazing.

[My inpatient dietitian] made it very much about calories and fat which made it even more difficult.”

Similarly, placing a ‘focus on the flavours and nutritional values’ was more helpful than focusing on calories. Participants did not value interventions focused solely on weight restoration: “There seemed to be a heavy emphasis on getting calories in…I can remember some discussion

about low volume high calorie foods. Everything seemed like a trick to get me to eat, rather than a means of addressing my negative eating rituals.”

“It would have been great to have the continuity of someone supporting me…rather than simply reviewing my calorie intake and weight progress.”

DISCUSSION

Although this was a small study and participants were self-selected, interesting themes were identified which have implications for dietetic management.

Responses reflected the importance of core human values: empathy, being treated as an individual and being listened to. It was unhelpful when staff conveyed assumptions regarding how people with anorexia nervosa behave or think.6,7 Many participants highlighted the importance of establishing trust, but emphasised that this takes time.

Anorexia nervosa can often be considered as part of a sufferer’s identity which can make the decision to accept treatment more difficult.8,9 The importance of a collaborative approach to treatment which encourages responsibility and autonomy, was highlighted by participants. It has been reported that rigid treatment programmes may result in patients rebelling,10 a phenomenon that resonated throughout participants’ responses in the present study. The phenomenon known as ‘battling’ is described by Palmer,11 with the internal conflict developing into an external

conflict with those who are imposing change. In such situations, the ED thrives as the individual tries to maintain a sense of autonomy.

Ways of involving people in their own care include practices such as plotting one’s own weight chart, being given clear factual information, establishing one’s own goals, and having staff listen to problems in a clientled manner. Clinicians who focus on food and weight rather than feelings and underlying anxieties were deemed as unhelpful; dietitians should encourage a ‘healthy state rather than a healthy weight’.12 Over emphasis on weight restoration may result in patients gaining weight to get out of hospital but quickly relapsing.7 The language used during dietetic consultations is important and it is unhelpful to discuss food in terms of ‘calories’ and ‘fat’ rather than ‘nutrients’, ‘protein’ and ‘flavours’.

Dietitians should provide support with practical and social eating skills, such as shopping, cooking and eating with others.13 Most participants in the current study reported that guidance on these key skills was not provided during treatment.

ED patients relate best to an individualised, collaborative approach that addresses the physiological and psychological elements of the disorder in parallel. Further research could explore the relationships within the dietitianpatient interaction in order to incorporate the most effective strategies for establishing a positive therapeutic alliance with these clients.

References 1 Royal College of Psychiatrists (2012). Eating disorders in the UK: service distribution, service development and training. London: Royal College of Psychiatrists 2 Cockfield A and Philpot U (2009). Symposium 8: Feeding size 0: the challenges of anorexia nervosa. Managing anorexia from a dietitian’s perspective.

Proceedings of the Nutrition Society, 68, 281-288. DOI: 10.1017/S0029665109001281 3 Hart S, Russell J and Abraham S (2011). Nutrition and dietetic practice in eating disorder management. Journal of Human Nutrition and Dietetics, 24, 144153. DOI: 10.1111/j.1365-277X.2010.01140.x 4 Federici A and Kaplan AS (2008). The patient’s account of relapse and recovery in anorexia nervosa: a qualitative study. European Eating Disorders Review, 16, 1-10. DOI: 10.1002/erv.813 5 Widdicombe S and Wooffitt R (1995). The language of youth subcultures: social identity in action. Harvester Wheatsheaf 6 Offord A, Turner H and Cooper M (2006). Adolescent inpatient treatment for anorexia nervosa: a qualitative study exploring young adults’ retrospective views of treatment and discharge. European Eating Disorders Review, 14, 377-387. DOI: 10.1002/erv.687 7 Tierney S (2008). The individual within a condition: a qualitative study of young people’s reflections on being treated for anorexia nervosa. Journal of the American Psychiatric Nurses Association, 13, 368-375. DOI: 10.1177/1078390307309215 8 Bezance J and Holliday J (2013). Adolescents with anorexia nervosa have their say: a review of qualitative studies on treatment and recovery from anorexia nervosa. European Eating Disorders Review, 21, 352-360. DOI: 10.1002/erv.2239 9 Schmidt U (2015). Anorexia nervosa - in 100 words. The British Journal of Psychiatry, 207, 4 10 Treasure J, Crane A, McKnight R, Buchanan E and Wolfe M (2011). First do no harm: iatrogenic maintaining factors in anorexia nervosa. European Eating Disorders Review, 19, 296-302. DOI: 10.1002/erv.1056 11 Palmer B (2014). Helping people with eating disorders: a clinical guide to assessment and treatment (2nd ed). Chichester, UK: Wiley-Blackwell 12 Mittnacht AM and Bulik CM (2015). Best nutrition counselling practices for the treatment of anorexia nervosa: a Delphi study. International Journal of Eating Disorders, 48, 111-122. DOI: 10.1002/eat.22319 13 Ashley M and Crino N (2010). A novel approach to treating eating disorders in a day-hospital treatment program. Nutrition and Dietetics, 67, 155-159. DOI: 10.1111/j.1747-0080.2010.01448.x

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COVER STORY

FALTERING GROWTH Jacqui Lowdon Paediatric Dietitian, Leeds Children’s Hospital Jacqui is a Clinical Specialist in Paediatric Cystic Fibrosis at Leeds Children's Hospital. She previously specialised in gastroenterology and cystic fibrosis.

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

REFERENCES Please visit the Subscriber zone at NHDmag.com

In autumn 2017, NICE produced a guideline on faltering growth.1 This article summarises the findings and examines the recommendations for further research arising from the guideline.

The NICE guideline includes the recognition, assessment and monitoring of faltering growth in infants and children, as well as a definition of growth thresholds for concern, identifying the risk factors for, and possible causes of faltering growth. It also covers interventions, when to refer, service design and acts as a reference for information and support.

Weight loss can occur in the first few days of life, which is due to changes in body fluids. However, sometimes there may be a justified reason for this weight loss, requiring intervention. This is quite different from concerns about inadequate weight gain in older infants and children.

Both are looked at in the NICE guideline.

NICE defines faltering growth as ‘a slower rate of weight gain in childhood than expected for age and sex’. However, NICE is unable to provide any estimates of prevalence, as various definitions of faltering growth have been used in the past in the UK. BABY’S EARLY DAYS

A baby’s weight loss usually stops after about three or four days of life, with most infants regaining their birth weight by three weeks of age. It is recommended that if the infant loses more than 10% of their birth weight, they should be clinically assessed for reasons that might account for the weight loss. Reference can also be made to NICE recommendations on postnatal care up to eight weeks after birth.2 Supplementary feeding with infant formula in a breastfed infant can be

used to aid weight gain, but this risks the cessation of breastfeeding. NICE provides recommendations regarding this, including supporting the continuation of breastfeeding, advising on expressing breast milk to promote milk supply and feeding the infant with any available breast milk prior to giving infant formula.2 AFTER THE EARLY DAYS OF LIFE

Weight The NICE guideline on faltering growth recommends using the following as thresholds for concern, with a centile space being the space between adjacent centile lines on the UK WHO growth charts: 1. A fall across one or more weight centile spaces, if birth weight was below the 9th centile.

2. A fall across two or more weight centile spaces, if birth weight was between the 9th and 91st centiles.

3. A fall across three or more weight centile spaces, if birth weight was above the 91st centile.

4. When current weight is below the 2nd centile for age, whatever the birth weight.

Height It is recommended that if there are concerns about an infant’s length or a child’s height, to try to obtain the biological parents’ heights and work out the mid-parental height centile. If it is below the predicted range, i.e. more than two centile spaces below the mid-parental centile, this may indicate undernutrition, or a primary growth disorder. www.NHDmag.com March 2018 - Issue 132

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FROM JANUARY 2018, APTAMIL PEPTI-JUNIOR WILL BE THE NEW NAME IN THE DIETARY MANAGEMENT OF MALABSORPTION RELATED CONDITIONS

Cow & Gate Pepti-Junior Product Code: 56560 PIP Code: 049-0714 Bar Code: 8712400590167

Aptamil Pepti-Junior Product Code: 124560 PIP Code: 049-0714 Bar Code: 8718117606917

SAME FORMULATION, NEW BRAND

WHAT DO I NEED TO KNOW?

SPECIALLY FORMULATED TO:

– Aptamil Pepti-Junior will be available in 450g tins, exactly the same as Cow & Gate Pepti-Junior

 Enhance digestion and absorption1,2  Promote palatability3-5  Reduce osmotic load6

– From JANUARY 2018, Cow & Gate Pepti-Junior will be called Aptamil Pepti-Junior – Only the brand name, packaging and codes will change, the formulation will remain the same

WHAT DO I NEED TO DO? – Continue to prescribe Cow & Gate Pepti-Junior until Aptamil Pepti-Junior becomes available, then simply switch over – the formulation is unchanged

For more information, call our Healthcare Professional Helpline on 0800 996 1234, or visit www.eln.nutricia.co.uk References: 1. Keohane PP et al. Gut 1985;26(9):907-13. 2. Bach AC, Babayan VK. Am J Clin Nutr 1982;36(5):950-62. 3. Mabin DC et al. Arch Dis Child 1995;73(3):208-10. 4. Pedrosa M et al. J Investig Allergol Clin Immunol 2006;16(6):351-6. 5. Miraglia Del Giudice M et al. Ital J Pediatr 2015;41:42. 6. Shaw V, Lawson M (eds). Clinical Paediatric Dietetics. 4th ed. Oxford: Blackwell Publishing, 2015.

IMPORTANT NOTICE: Aptamil Pepti-Junior is a food for special medical purposes for the dietary management of malabsorption related conditions. It should only be used under medical supervision, after full consideration of the feeding options available including breastfeeding. Suitable for use as the sole source of nutrition for infants from birth, and/or as part of a balanced diet from 6 months.

FOR HEALTHCARE PROFESSIONAL USE ONLY. 17-075/September 2017

FALTERING GROWTH Table 1: Suggestions for discussions with parents or carers Encouraging relaxed and enjoyable feeding and mealtimes.

Eating together as a family or with other children.

Encouraging young children to feed themselves.

Allowing young children to be 'messy' with their food.

Making sure feeds and mealtimes are not too brief or too long.

Setting reasonable boundaries for mealtime behaviour while avoiding punitive approaches.

Avoiding coercive feeding.

Establishing regular eating schedules.

Body Mass Index BMI centile can be used in children above two years of age if there is concern about faltering growth. If the BMI is below the 2nd centile, this can reflect either undernutrition, or a small build.

If it is below the 0.4th centile, this is suggestive of probable undernutrition requiring assessment and intervention.

Assessment The following is recommended: 1. A full assessment is required, clinically, developmentally and socially.

2. A detailed feeding/diet history.

3. Consider a direct observation of feeding or at mealtimes.

4. Consider investigating for urinary tract infection, coeliac disease and perform further investigations if indicated.

Interventions A management plan, with individual goals, should be agreed with the parents and carers (see Table 1).

NUTRITIONAL MANAGEMENT

Food first First-line advice should be given on food choices that are appropriate for the child’s developmental stage in terms of quantity, type and food texture to optimise energy and nutrient density. Where a further increase in the nutrient density of the diet is required beyond that achieved through advice on food choices, then short-term advice on dietary fortification using energy-dense foods should be given, along with a referral to a paediatric dietitian.

Oral liquid nutritional supplements If faltering growth continues after a food first approach fails, then a trial of an oral liquid nutritional supplement can be considered.

The NICE guideline defines an oral liquid nutritional supplement as ‘a high-energy liquid feed designed for enteral use, usually selected and prescribed after specialist advice from a paediatric dietitian’.

Any infant/child receiving a nutritional supplement requires regular reassessment. The following factors need to be taken into account: • Weight change • Linear growth • Intake of other foods • Tolerance • Adherence • The views of parents or carers Tube feeding The NICE guideline on faltering growth recommends that tube feeding should only be considered when there are serious concerns about weight gain, where an appropriate specialist multidisciplinary assessment for possible causes and contributory factors has been completed and when other interventions have been tried without improvement. The plan will need to include a specific weight target and a strategy for its withdrawal, once the weight goal is achieved.

MONITORING

Different factors will need to be taken into consideration, such as the age of the child and the severity of the faltering growth, but the guidance recommends no more often than: • daily if less than one month old; • weekly between one to six months old; • fortnightly between six to 12 months; • monthly from one year of age.

NICE also cautions against weighing children more often than is required, as it will only add to parental anxiety, as minor short-term weight changes may cause unnecessary concern.

If there are concerns about faltering growth, length or height should be monitored, but no more often than every three months. www.NHDmag.com March 2018 - Issue 132

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FALTERING GROWTH Frequency of monitoring It would be of great benefit to know whether a particular frequency, or schedule of measuring, infants and children would identify faltering growth at an earlier age and contribute to an earlier catch-up in weight. Presently, it is suggested that routine measurements are taken at the time of routine childhood immunisations.

It is unclear whether this is most effective for children where there are concerns about their growth. If a different schedule of routine measurement was found to identify faltering growth at an earlier age and contribute to an early catch-up in weight, it would need to be considered how best it should be delivered.

Referral NICE recommends that if an infant or child with faltering growth has any of the following, then they should be discussed with, or referred to, an appropriate paediatric specialist care service: • symptoms or signs that may indicate an underlying disorder; • failure to respond to interventions delivered in a primary care setting; • slow linear growth or unexplained short stature; • rapid weight loss or severe undernutrition features that cause safeguarding concerns.

NICE also recommends that infants or children with faltering growth should not be admitted to hospital unless they are acutely unwell, or there is a specific indication requiring inpatient care, e.g. tube feeding.

RECOMMENDATIONS FOR RESEARCH

The guideline also includes some recommendations for research. These include areas that paediatric dietitians could investigate within their own clinical practice.

HIGH ENERGY LIQUID FEED SUPPLEMENTS

The question, “Do high energy liquid feed supplements improve growth in children with faltering growth?” has yet to be answered. It appears logical to treat inadequate dietary intake with high energy liquid dietary supplements.

However, despite being widely promoted for use in children, little research has been carried out on their efficacy. NICE reports that experimental 18

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research suggests that high energy liquid feed supplements may supress appetite, thus displacing normal diet. NICE also reports one case series where high energy liquid feed supplements were withdrawn, appetite improved, with no impact on weight. It is, therefore, recommended that further research is required to establish whether their effectiveness justifies their cost and the suppressant effect on appetite.

BEHAVIOURAL INTERVENTIONS

In the community, primary healthcare staff, such as health visitors and nursery nurses, provide behavioural interventions for faltering growth.

However, behavioural interventions are time consuming and costly. Evidence for the specific components of behavioural interventions are scarce and if they are effective, they could have short-term and longer-term preventative results. Standardising approaches to behavioural interventions could both improve clinical practice and save costs.

PARENTAL SUPPORT

For parents with a child with faltering growth, it can be a very distressing time, often blaming themselves. It can also have a long-term negative impact on the child/parent relationship.

Presently, no studies exist that describe parental experiences or concerns. Research on this topic would help to improve understanding of the needs and concerns of these parents, which will then enable healthcare professionals to better address them.

SUMMARY

The NICE guideline1 provides us with a guide to the recognition, assessment and monitoring of faltering growth in infants and children. It includes a definition of growth thresholds for concern and identification of the risk factors for, and possible causes of, faltering growth. It also covers interventions, when to refer, service design and information and support. All members of the multidisciplinary team can refer to this guideline, and so too can providers and commissioners of children’s services, parents and carers of children with faltering growth. The NICE guideline of faltering growth is an essential point of reference for anyone involved in the care of infants and children with faltering growth.

IN ASSOCIATION WITH THE BSNA

PAEDIATRIC

SPECIALIST INFANT FORMULA: THE ESSENTIAL NEED FOR PRESCRIPTIONS TO BE MAINTAINED Martha Hughes Scientific and Regulatory Executive, BSNA Martha is an Associate Nutritionist with a degree in Nutrition from the University of Surrey. She has research and regulatory experience in specialist nutrition.

REFERENCES Please visit the Subscriber zone at NHDmag.com

It is well established that breastfeeding is the best way to feed a baby, being important for both the mother and the infant. The World Health Organisation (WHO) recommends that babies are exclusively breastfed until six months of age, after which breastfeeding should be complemented with the introduction of solid foods until the age of two.1 When a mother cannot, or chooses not to, breastfeed, and there are no medical concerns, then a standard infant formula may be used. Some infants are unable to receive adequate nutrition from breastmilk, or standard formula alone, because of a disease, disorder or medical condition. For these infants, the only alternative source of nutrition which is suitable and safe, is a scientifically formulated infant formula.

These specialist milks are known as Foods for Special Medical Purposes (FSMPs) intended for infants.

Correct nutrition during infancy is essential to ensure adequate growth, health and development.2 An underlying illness or condition can lead to malnutrition, with nutritional deficiencies, stunting and/or wasting presenting. This can be detrimental for an infant and have long-lasting implications for the health of the child.1 Infant foods for special medical purposes (iFSMPs) are medical products, specifically formulated and produced for a medical need and intended for the exclusive or partial feeding of infants and young children, allowing infants to receive adequate nutrition when breastmilk or standard infant formula alone cannot provide it.

There is a diverse range of iFSMPs available to address a number of conditions which infants can suffer from; it is essential that infants receive the appropriate formula for their individual requirements so that they are able to achieve optimal growth and development. The conditions for which iFSMPs may be used can vary greatly

in terms of their permanence, severity and impact on day-to-day life. The age at which they should be introduced also varies, with some medical conditions being detected at birth by newborn screening (e.g. PKU), and others having a later onset or diagnosis, e.g. between six to 12 months, such as cows’ milk protein allergy (CMPA).

CONDITIONS WHERE AN IFSMP MAY BE REQUIRED

Cows’ Milk Protein Allergy CMPA is the most common highly complex food allergy in infants and young children, affecting 1.9% to 4.9% of infants and children worldwide.3 It is an allergic reaction to one or both of the proteins, casein and whey, found in milk. CMPA can be categorised as immediate (IgE-mediated) or delayed (non IgE-mediated).

Exposure can occur either through breastfeeding (via cows’ milk protein in the maternal diet), through standard infant formula, or when weaning occurs and solids are introduced.

Symptoms include skin problems such as eczema, hives and swelling, respiratory symptoms and gastrointestinal issues. In worst case scenarios, CMPA can lead to admission to A&E and/or paediatric intensive care units due to anaphylaxis and can potentially lead to death. It is important that those affected by CMPA are diagnosed and managed appropriately. For confirmed CMPA, strict avoidance of cows’ milk protein is currently the safest strategy www.NHDmag.com March 2018 - Issue 132

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

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

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

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

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

Date of preparation: July 2015 RXANI150142

Infant foods for special medical purposes (iFSMPs) are medical products, specifically formulated and produced for a medical need and intended for the exclusive or partial feeding of infants and young children, allowing infants to receive adequate nutrition when breastmilk or standard infant formula alone cannot provide it. for management, i.e. elimination of cowsâ&#x20AC;&#x2122; milk protein for the breastfeeding mother, via an elimination diet, managed by a qualified professional.

If this is not possible, or an infant is formulafed, a specific iFSMP can be prescribed, such as an extensively hydrolysed formula (eHF) or an amino-acid based formula (AAF), as stated by NICE and MAP guidelines.4,5 In an eHF, the protein has been hydrolysed into smaller peptides which the immune system does not recognise as cowsâ&#x20AC;&#x2122; milk protein and, therefore, no reaction occurs.6 These are tolerated by the majority of infants and children (90%) with CMPA. An AAF, which is made-up of free amino acids, is an alternative for those infants and young children who cannot tolerate an eHF, or those with severe symptoms.7 Lactose Intolerance Infants with lactose intolerance have the inability to digest the carbohydrate lactose because they lack the enzyme lactase. Typically, lactose intolerance in infants only lasts from a few days up to a few weeks. The common symptoms of lactose intolerance are gastrointestinal with loose stools, abdominal pain, flatulence, bloating and discomfort commonly presenting. It is during this time that an iFSMP containing an alternative carbohydrate source to the lactose present in standard formula plays a vital role in managing the condition and ensuring the continued nourishment, development and health of the child.

Although lactose intolerance can cause similar symptoms, it should not be confused with CMPA. Formulae for lactose intolerance are not suitable for infants with CMPA as they still contain cowsâ&#x20AC;&#x2122; milk protein.

Preterm Thanks to advances in antenatal care, an increasing number of preterm babies are surviving. These babies are vulnerable and specialist paediatric dietitians have a critical role to play in making sure that the diet of these infants is effectively managed. Expressed breastmilk supplemented by a breastmilk fortifier is the preferred method of feeding. However, mothers of preterm infants may be under particular stress, which may affect their milk supply. If so, a specialist ready-to-feed preterm formula may be required,8 which typically contains higher levels of energy, a higher protein:energy ratio and higher levels of key micronutrients, such as iron and vitamin D, when compared with standard formula. These formulae are designed to support the increased metabolic requirements of preterm infants.

Faltering growth Faltering growth is a term used to describe an infant who is not gaining weight or length, as expected, over a period of time. Causes of faltering growth can include: higher nutritional requirements, or an inability to consume enough nutrients to meet requirements, e.g. through muscular disorders or respiratory disease; poor swallowing; vomiting and diarrhoea; or poor absorption of nutrients, such as digestive disorders including cystic fibrosis and chronic kidney disease.

Faltering growth may be managed with a specialist high energy infant formula, which provides more calories and protein than a standard infant formula, to help achieve catchup growth. Turn to page 15 for more on the NICE guideline on faltering growth.

Gastro-oesophageal reflux Reflux, or gastro-oesophageal reflux, is when the stomach acid moves up into the oesophagus www.NHDmag.com March 2018 - Issue 132

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PAEDIATRIC or even into the mouth. It is common for this to happen in infants during or immediately after feeding. However, when the volumes of returned feed are significant and the infant has additional symptoms, such as excessive crying, poor growth and regular vomiting, then either an anti-reflux formula, which is pre-thickened or thickens in the stomach, or a feed thickener added to standard formula, may be required to manage this condition.

THE ROLE OF THE HEALTHCARE PROFESSIONAL

All iFSMPs should be used under the guidance of a healthcare professional.

If an infant shows signs or symptoms which indicate that a specialist product may be required, it is essential that the infant is diagnosed and managed appropriately. Paediatric dietitians have the specialist expertise to collaborate with a GP to diagnose, advise and prescribe the appropriate product for an infant, ensuring that sufficient nutrients are provided to safeguard growth and development.

As infants have relatively high nutritional needs and growth trajectories, their nutritional support should be constantly monitored. One size does not fit all; as children grow and develop, their nutritional needs change, therefore they may need different nutritional inputs at different stages. Moreover, some conditions are characterised by periods of relapse and remission, e.g. Crohn’s disease, which makes ongoing monitoring even more important. The value of good paediatric dietetic advice in these situations cannot be underestimated.

Not only is a medical condition stressful for the infant, it can be very upsetting for parents or carers. Conditions, such as gastro-oesophageal reflux, lactose intolerance and CMPA, can be significantly distressing and frightening for the parents of infants who suffer from them.9 Therefore, any concerned parent should be encouraged to see their GP and subsequently referred to a paediatric dietitian to ensure the appropriate formula is recommended when their child is unwell and the condition professionally managed. This eliminates the risk of the parent or guardian receiving inappropriate advice about the dietary management of their child, which could put the health of the infant at risk.

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PRESCRIPTIONS ARE AT RISK

All iFSMPs go through a strict application process, which the Advisory Committee on Borderline Substances (ACBS) - the committee responsible for what is available on prescription assesses and approves, taking into consideration the cost and efficacy of all these formulae for the dietary management of clinical conditions.

These products are also highly regulated by EU legislation10 and supported by robust evidence, allowing healthcare professionals and patients to trust in the efficacy and quality of the products available.

Even though these products are ACBS approved, highly regulated and the NHS Constitution11 states that, ‘Access to NHS services is based on clinical need, not an individual’s ability to pay’, prescriptions of iFSMPs are at risk. Proposals by some Clinical Commissioning Groups (CCGs) have included restrictions to soya-based infant formula, thickened infant formula and formula for lactose intolerance, for example. These specialist products play a vital role in safeguarding the health and development of vulnerable infants and young children, no matter the severity of the condition, in both the hospital and the community.

PUTTING NUTRITION AT THE HEART OF PATIENT CARE

The role of a paediatric dietitian in diagnosis, treatment and review is fundamental. Prescribing the appropriate iFSMP provides optimal nourishment for all infants with a disease, disorder or medical condition. BSNA supports the following: • iFSMPs to be recognised as an integral part of the management of diseases, disorders and medical conditions which require nutritional support.

• iFSMPs to be accessible to all patients who need them. All care pathways should clearly identify how and when iFSMPs should be used to help manage a patient’s condition.

• iFSMPs to be prescribed and used appropriately when needed, and for patients to be regularly reviewed and monitored by a healthcare professional.

PUBLIC HEALTH

NUTRITION AND HYDRATION WEEK: 12TH TO 18TH MARCH 2018 “Our mission is to create a global movement that will reinforce, focus, energise, create activity and engagement for nutrition and hydration as a fundamental element to maintaining the health and wellbeing for our global community.”

It’s an important mission statement from the organisers of Nutrition and Hydration Week. It’s an important annual event too. What started out as a one-off patient safety week back in 2012 has become a global social movement that aims to highlight, promote and celebrate improvements in the provision of nutrition and hydration locally, nationally and around the world.

Emphasising the importance of good nutrition and hydration is essential, not only in our personal lives when we are ill, but in social care too: malnutrition in elderly patients puts a great burden on the NHS budget; good nutrition and hydration can alleviate this problem and protect patients from unnecessary risks.

10 KEY CHARACTERISTICS OF ‘GOOD NUTRITION AND HYDRATION CARE’1 1

Screen all patients and service-users to identify malnourishment or risk of malnourishment and ensure actions are progressed and monitored.

2

Together with each patient or service user, create a personal care/support plan enabling them to have choice and control over their own nutritional care and fluid needs.

3

Care providers should include specific guidance on food and beverage services and other nutritional and hydration care in their service delivery and accountability arrangements.

4

People using care services are involved in the planning and monitoring arrangements for food service and drinks provision.

5

Food and drinks should be provided alone or with assistance in an environment conducive to patients being able to consume their food (Protected Mealtimes).

6

All healthcare professionals and volunteers receive regular raining to ensure they have the skills, qualifications and competencies needed to meet the nutritional and fluid requirements of people using their services.

7

Facilities and services providing nutrition and hydration are designed to be flexible and centred on the needs of the people using them, 24 hours a day, every day.

8

All care providers to have a nutrition and hydration policy centred on the needs of users, and is performance managed in line with local governance, national standards and regulatory frameworks.

9

Food, drinks and other nutritional care are delivered safely.

10

Care providers should take a multidisciplinary approach to nutrition and hydrational care, valuing the contribution of all staff, people using the service, carers and volunteers working in partnership. www.NHDmag.com March 2018 - Issue 132

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NHD0318

PUBLIC HEALTH Originally focusing on improve-ments in nutrition and hydration across health and social care, Nutrition and Hydration Week is spreading its wings. Over recent years, so many organisations and sectors have got involved in the week’s events, including schools and businesses, that now everyone is encouraged to take part in highlighting and promoting nutrition and hydration from 12th to 18th March this year.

Nutrition and Hydration Week is your week - take a look at the website (www.nutrition andhydrationweek.co.uk) for ideas on how to get involved and the kind of events you could put on. The key is that you should be able to use the week to do the things that are important to you. All they ask is that you share your plans and events, so that they can be highlighted on the website.

THERE’S STILL TIME TO JOIN IN

If you are keen to raise awareness of how eating, drinking and swallowing difficulties

(dysphagia) can affect people’s lives, then please visit: www.nutritionandhydrationweek.co.uk to get involved in the Week’s events. Wednesday 14th March is the date for the Global Tea Party which will see an afternoon of tea served in health and social care settings around the world. Wednesday 14th March is a big day too, for the Royal College of Speech and Language Therapists (RCSLT); it’s Swallowing Awareness Day 2018. The RCSLT has built a campaign toolkit to help you get involved, including posters, factsheets and puzzles to enable you to get your message across. Visit: www. givingvoiceuk.org/swallowing-awarenessday/for more information.

The aim of all events is, of course, to promote the week, the work your organisation does every day and to show how to improve nutritional intake. The number of afternoon teas you serve, for example, may vary, but every one of them indicates YOUR commitment to improving nutritional care.

Reference 1 NHD England (2015). 10 key characteristics of ‘good nutrition and hydration care’. www.england.nhs.uk/commissioning/nut-hyd/10-key-characteristics/

NETWORK HEALTH DIGEST

www.NHDmag.com A wealth of useful dietetic resources for all dietitians and nutritionists Make the most of your NHD Community! www.NHDmag.com March 2018 - Issue 132

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A Higher Standard Leading the way in sustainably sourced meals

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Healthcare

PUBLIC HEALTH

THE PHYSICAL, SOCIAL AND PSYCHOLOGICAL CAUSES OF MALNUTRITION IN OLDER ADULTS Emily Stuart, Wiltshire Farm Foods Dietitian

REFERENCES Please visit the Subscriber zone at NHDmag.com

One in 10 older people in the UK are suffering from, or are at risk of malnutrition, a condition that impacts on a person’s wellbeing, thus leading to further problems, such as an increase in hospital admissions, increased dependency and increased risk to life.

The number of people aged 60 and over suffering from malnutrition is expected to surpass 20 million by 2030; by 2040 nearly one in four people will be over 65.1 Currently it costs the NHS £19.6 billion per year2 and, certainly, as the population ages, it will become one of the UK’s most expensive conditions.

Malnutrition can stem from a series of interrelated physical, social and psychological causes. The most common causes include medical conditions resulting in a lack of appetite, such as cancer and liver disease, or conditions which disrupt the body’s ability to optimally digest food and absorb nutrients. Older people often struggle to prepare and consume meals due to physical hindrances, including poor dentition, dysphagia, loss of taste and smell, physical disabilities, or poor mobility.

Isolation, often exacerbated by physical issues such as hearing difficulties and decreased mobility, leads to many older people in our community eating alone.

With mealtimes being a social occasion, a lack of social interaction around food may discourage eating. Many older people survive on small pensions, or on savings alone, which may lead to a decrease in the quantity and quality of food consumed.

Mental health problems, such as depression and anxiety, stress or bereavement can affect a person’s appetite and interest in eating. If insufficient nutrients are consumed, a change in mood and energy levels will eventually occur and a negative cycle will ensue. Other psychological causes can include eating disorders, substance addiction and dementia.

Clinical interventions include screening, monitoring and the involvement of healthcare professionals. Dietitians are best placed to advise on how best to tackle malnutrition through diet, as well as also prescribing ONS if indicated. Speech and Language Therapists are the principal healthcare professionals involved in diagnosing and recommending treatment for malnutrition caused by dysphagia.

Dietitians can also provide a supporting role, as can occupational therapists who can provide appropriate aids to enable independent eating.

The social factors are more challenging to address. Isolation and poverty are most evident within the community, so it is not surprising that this is where 93% of malnourishment occurs.4 Successful social interventions can include shopping schemes, community meal services, or lunch and activity clubs. Where possible, family and friends should be encouraged to make visits during mealtimes, to help too. There is a vast network of support, information and guidance available to older people living with, or in danger of malnourishment. However, many people never find their way into this network, due to lack of awareness.

Progress has clearly been made, but this must continue, with the ultimate goal of increasing awareness of the condition and creating an integrated system of health and social care. Only then will older people receive the help they need and deserve to live their lives long and to the full. www.NHDmag.com March 2018 - Issue 132

27

*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: July 2017 ANUKANI170158a

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 uncover buried treasure?

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Fortisip Compact Protein is a Food for Special Medical Purposes for the dietary management of disease-related malnutrition and must be used under medical supervision.

For healthcare professionals only.

Date of preparation: January 2018

Nutritional Support - integral to the continuum of care

COMMUNITY

FOOD-BASED ACTIVITY AND PERSON-CENTRED CARE FOR OLDER PEOPLE IN CARE HOMES Gill Hooper RNutr, Freelance Registered Nutritionist, GH Nutrition

Food, good nutrition and hydration are important in providing care for older people in care homes. Food-based activity can help stimulate an interest in food, enhance health and wellbeing and help prevent malnutrition.

Gill runs an independent food and nutrition consultancy. She works with people living with dementia, their carers and healthcare professionals, as well as lecturing and providing nutrition training courses and workshops.

Malnutrition affects 35% of care home residents1 and, according to the Alzheimer’s Society, 70% of care home residents are living with dementia.2 Older people, including those living with dementia, are more likely to be at nutritional risk for a number of reasons, such as difficulty chewing and swallowing, reduced mobility and motor skills, social isolation and underlying illness. The person living with dementia may encounter specific challenges such as confusion, poor communication skills and may experience a change in food preference or eating habits.

There are many ways to encourage food and drink intake, from food fortification and oral nutritional supplements to providing finger food and considering the presentation of food and the dining experience. For someone living with dementia, the Dementia Mealtime Assessment Tool (The DMAT) is available, which enables carers to ‘assess, and select evidence based interventions and generate a personcentred care plan to support mealtime eating abilities and meal behaviours in people with advancing dementia’.3

Joanne Holmes RNutr, Lecturer in Nutrition, Bournemouth University Joanne’s research is focused towards improving food, fluid and the overall meal experience for the older person.

She was coinvestigator in a Burdett Trust for Nursing funded research project, leading to the production of the workbook referred to in this article.

REFERENCES Please visit the Subscriber zone at NHDmag.com

PERSON-CENTRED CARE

Person-centred care focuses on the needs of a person and ensures that they are treated with dignity, compassion and respect and that care is personalised, coordinated and enabling.4 The Social Care Institute for Excellence (SCIE) suggests that person-centred care is about respecting an individual’s past, supporting their present and

helping them plan for their future.5 In a care home, this involves getting to know individuals, finding out about their personal life story and offering services to help maintain or encourage independence and wellbeing.

ACTIVITY

Activity is a way of engaging in this process. Care UK, one of the leading providers of health and social care in the UK, promotes activity-based care to enable meaningful activity and interests for groups and individuals. They have produced a booklet, As Easy as ABC,6 which contains 100 hints and tips for activity-based care. These include tips to help maintain independence, health and wellbeing and tips to aid reminiscence.

A number of the suggestions involve food-based activity, for example, at breakfast, serving toast in a toast rack with butter and marmalade in small dishes to encourage an individual to prepare it themselves. This may seem a very simple activity, but can present a real sense of achievement, promote independence and autonomy.

Activity can play an important role in encouraging food and drink intake.

Following a two-year research project on nutritional care for people living with dementia, researchers from the Ageing and Dementia Research Centre (ADRC) at Bournemouth University have produced a workbook, Eating and Drinking Well: Supporting People Living with Dementia.7 The workbook aims to develop knowledge and skills around food and hydration for care givers to provide the best care for people living www.NHDmag.com March 2018 - Issue 132

31

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There are many ways to encourage food and drink intake, from food

fortification and oral nutritional supplements to providing

finger food and considering the presentation of food and the dining experience.

with dementia. The information is relevant for older adults in residential care and is an excellent resource for care staff, family and friends. In addition to food and drink availability and the importance of communication and relationships, the workbook includes a section on the importance of activity. This considers how to encourage independence through meaningful activity, the importance of life histories and activity to enhance the appetite and evoke the senses. For further information, the workbook is available online.8 MEANINGFUL ACTIVITY

To promote health and mental wellbeing, NICE recommends that ‘older people in care homes are offered opportunities during their day to participate in meaningful activity’.9 What is meant by meaningful activity? It can be any activity specific to a person’s needs, ranging from daily living, including preparing food and eating, hobbies such as gardening, baking or reading and social activities with friends and family. ‘All types of meaningful activity can promote a sense of independence and wellbeing which can consequently positively impact on appetite.’7 Choosing food and drink, meal preparation and spending time in a kitchen, will be a familiar activity for many people and part of a daily routine. Involving residents in menu planning, or holding a menu tasting event, can increase an interest in food and drink and help them feel valued. Offering the opportunity to take part in domestic activities, and the mealtime process in particular, are perfect examples of meaningful activity. Tasks such as helping to peel vegetables for dinner, setting the table, or clearing dishes

and helping to wash up, can give someone a sense of purpose and value and increase confidence, in turn promoting an interest in food and mealtimes. Creating a separate kitchen area for residents to prepare their own drinks and simple snacks, such as a sandwich, or enabling them to choose a piece of cake, or fruit, can have massive benefits. Being able to make a choice can boost self-esteem and help someone maintain important skills; spooning coffee into a cup may seem a very simple task, but provides a sense of independence. It is important of course to know your residents and consider their safety in the kitchen and carry out suitable risk assessments.

LIFE STORY

Finding out about someone’s personal life story is essential in providing person-centred care and developing appropriate activity. Life story work and reminiscence are especially important for engaging with someone living with dementia.

All staff working within a care home, as well as family and friends, can be involved with this. It may be that a resident was a keen gardener in the past and grew their own vegetables. Perhaps an area of a care home garden can be adapted to include raised vegetable beds and encourage www.NHDmag.com March 2018 - Issue 132

33

COMMUNITY interested residents to grow vegetables and pick them for use in the kitchen. Or maybe another resident enjoyed baking and can help to stir a cake mix or knead bread dough, the satisfaction of making something and the smell of baking can also help stimulate appetite.

Memories of past events are often connected with food, such as street parties to celebrate the Queen’s coronation, war time rationing, childhood birthdays and family weddings, or it may just be a favourite recipe that reminds you of a particular person or occasion. Conversation around food and such events is in itself an important activity, but can encourage an interest in mealtimes. Why not consider putting together a cookery book of favourite recipes, creating a wonderful record for families to keep and providing the opportunity for someone to share their life story and experience? With reminiscence in mind, the Dairy Council have produced a set of four nostalgic postcards, with the tagline, ‘getting thin and frail doesn’t have to be a normal part of ageing’, to promote the importance of eating and drinking enough to maintain health. The postcards accompany a booklet on how to identify malnutrition in older adults and steps that can be taken to overcome it.10 ACTIVITY TO STIMULATE APPETITE

Activity itself can help stimulate appetite, whether it’s physical activity, preparation for a meal, or specific events related to food. Themed events are a great way to encourage interaction and create a sense of wellbeing. The options can be as endless as your imagination, strawberries and cream during Wimbledon fortnight, fish and chip suppers, afternoon tea dances, or international days. Icing cupcakes and biscuits, preparing fruit salad, making sandwiches and decorating pizzas are all activities that can stimulate an interest in food. Activity can take place away from the care home setting.

Garden centres are a great place to visit with so much to see and there’s usually a coffee shop or restaurant attached, or tea rooms serving afternoon tea in vintage china crockery. How about themed food tasting sessions? This presents the opportunity for activities which 34

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can prompt conversations about food and memories, such as, sampling different varieties of cheese, exotic fruit, cakes or tea.

ACTIVITY AND OUR SENSES

Finally, activity can be used to evoke the senses.7 As we age, our senses deteriorate and this is intensified for someone living with dementia.

Changes in taste, smell and sight particularly impact our enjoyment of food. Our number of taste buds decrease with age, we produce less saliva and the ability to distinguish salty, sour and bitter foods is reduced. The enjoyment of sweet foods, however, remains the same or can increase, as is often the case with dementia.

Adding natural flavour enhancers, such as tomatoes, parmesan, mushrooms, herbs and spices to food, can help stimulate the senses and appetite at mealtimes.

Research from ADRC at Bournemouth University, published in BMC Geriatrics, found that, ‘the use of aromas within the care home was acknowledged as an important route in building up anticipation of the meal and stimulating the senses’.11 This included aromas created from cooked breakfast and baking, but also artificial aromas such as coffee and fresh bread. The sense of smell is linked with memory and aromas can be used to evoke specific memories, such as roast dinner on a Sunday, fish and chips at the seaside, or tomatoes growing in a greenhouse.

Deterioration in sight is common as we age and can impact on our perception of food.

Ensuring that food looks attractive to eat is essential, it is often said that we eat with our eyes, so food should be colourful and well presented in order to stimulate appetite.

SUMMARY

Activity based around food has an important role in stimulating an interest in food for older people within a care home setting and can enhance the health and wellbeing of residents. This in turn can help reduce the risk of malnutrition. In providing person-centred care and appropriate activity, it is essential to know the needs, abilities and experience of each person to support them and encourage independence and wellbeing.

CONDITIONS & DISORDERS

DYSPHAGIA: AN UPDATE ON CURRENT PRACTICE Amanda Mostyn Registered Dietitian, University of Chester Amanda is a Band 5 rotational dietitian currently working in Stroke and Neurology.

Her work includes acute stroke/stroke rehab. Amanda has had previous experience in general medicine, gastroenterology and orthopaedics.

REFERENCES Please visit the Subscriber zone at NHDmag.com

Dysphagia is the term used to describe a swallowing impairment, which can be transient, deteriorating or persistent, depending on the underlying pathology. It can be a result of acute medical decompensation (e.g. sepsis, UTI, exacerbated COPD), neurological impairment (e.g. CVA, HI, progressive disease), or structural changes (e.g. head and neck cancers and subsequent reconstructions).1 Prevalence is difficult to measure due to the nature of how incidence is recorded it can often be associated with a variety of different health conditions to which an individual is being treated.1 Dysphagia in the acute setting is commonly seen in the ageing population. This could be related to the fact that the mechanism of swallowing is greatly reliant upon the motor and sensory nervous system being intact, and these deteriorate with age.1 Swallowing is a complex physiological sequence which involves over 30 nerves and muscles. These have two main functions: to move food from mouth to stomach and provide airway protection.1 There are four stages of swallowing: oral preparatory phase, oral phase, pharyngeal and oesophageal phase. These each play a role in the prevention of aspiration, chest infections and pneumonia.1 There are various ways in which a person with dysphagia can be supported and this is most commonly overseen by a speech and language therapist (SLT).

SLTs play a valuable multidisciplinary team (MDT) role in the assessment, differential diagnosis and subsequent management of dysphagia. This can include environmental modifications, safe swallowing advice, appropriate dietary modification and the application of swallowing strategies, which improve the efficiency of swallow function and reduce the risk of aspiration. SLTs work very closely with dietitians to ensure optimum nutrition and hydration for high risk patients.1

This article will discuss the link between dysphagia and malnutrition, some of the treatment options for dysphagia (particularly in the prevention of malnutrition) and the implementation of the International Dysphagia Diet Standardisation Initiative (IDDSI) framework which is to be officially launched in April 2018.2 This is thought to be an important step forward in standardising dysphagia care worldwide.

Dysphagia can affect individual or multiple stages of the swallowing mechanism. This can have adverse effects on the individual, particularly relating to their nutritional intake. As previously highlighted, there are various different management options for dysphagia, but for the purpose of this article, we shall focus on dietary modifications and medical interventions, such as enteral feeding (e.g. nasogastric tube [NGT] and percutaneous endoscopic gastrostomy [PEG]). These treatments are commonly used within dietetic practice to prevent malnutrition and dehydration within dysphagic patients.1 ENTERAL FEEDING IN DYSPHAGIA

Enteral feeding within individuals with disorder swallowing is commonly used in an acute setting as initial reduction of aspiration risk and to improve nutritional status. An MDT approach is required for long-term nutritional plans, such as PEG tubes; each case should be considered individually, recognising the clinical situation, diagnosis, prognosis and ethical issues involved.3 www.NHDmag.com March 2018 - Issue 132

35

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CONDITIONS & DISORDERS Table 1: The different texture dietary modifications6 Textures

Description

Examples

Category B Thin puree diet

• It does not require chewing.

• Smooth throughout (no lumps).

• Does not hold its shape on a plate or when scooped.

• A light, disposable plastic teaspoon must be able to stand upright when the head is fully covered.

Pureed fruits with custard, cream, mousse, yoghurt. Add extra milk or cream to achieve correct consistency.

Category C Thick puree diet

• Does not require chewing.

• Smooth consistency (no lumps).

• Holds its shape on a plate or when scooped.

• Prongs of a fork make a clear pattern on the surface.

• It can be piped, layered or moulded.

The texture of wheat-biscuit breakfast cereal fully softened with milk fully absorbed.

Category D Pre-mashed

• Food is soft, tender and moist and needs very little chewing.

• Has been mashed up with a fork before serving.

• Meat is finely minced or made to texture C if necessary.

Small soft well cooked pasta with sauce, for example, moist macaroni cheese.

Category E Fork- mash

• Food is soft, tender and moist but needs some chewing.

• It can be mashed with a fork.

Soft scrambled egg, poached egg with soft bread/bread rolls (no crusts), butter or margarine.

Table 2: Modified fluids6 Texture fluid

Description

Stage 1 Syrup consistency

• Can be drunk from a cup or straw.

• Will leave a thin coating on the fork/spoon/cup.

Stage 2 Custard consistency

• Easiest way to take this drink is from a spoon.

• Flows slowly when poured.

• Leaves a thick coat on the back of a fork/spoon/cup.

Stage 3 Pudding consistency

• Needs to be taken with a spoon.

• Will hold a cohesive shape on a spoon.

NB: if a spoon/fork is able to stand upright unsupported in the drink, it is too thick.

It is important to remember that nutritional care plans in palliative care should consider the appropriateness of a nutritional intervention and should not have burdensome restrictions imposed on oral food and/or fluid intake if those restrictions would exacerbate suffering.4

Nutritional feeding at risk is a term often used by speech and language therapists when an individual with dysphagia may have the inability to swallow any of the recommended modified textures and/or is not suitable for enteral nutrition.5 Decisions on enteral nutrition and hydration are open to conventional ethical analysis and subject to mental capacity law. It is best practice to determine someone’s best interests; which means considering values and preferences, previous and current wishes, and requires consultation with families and other carers.5 MODIFIED TEXTURES

Modified diet and fluids can be used as a strategy for managing disordered swallowing.

Thickening fluids, or providing soft foods, can make a great difference to an individual’s care and safety. Tables 1 and 2 show the currently used unified descriptions of modified textures in the UK.6 However, it is important to note that in the near future, the International Dysphagia Diet Standardisation Initiative (IDDSI) framework www.NHDmag.com March 2018 - Issue 132

37

NHD0318

8

CONDITIONS & DISORDERS Figure 1: The International Dysphagia Diet Standardisation Initiative (IDDSI) framework.2,10 The framework consists of a continuum of eight levels (0-7) and includes descriptors, testing methods and evidence for both liquid thickness and food texture levels.

will be released in the UK (Figure 1). The IDDSI texture modification descriptors, this can lead committee was setup in 2013 and includes a group to the provision of an incorrect consistency 8-+46#5#$%&&'%$()*+#,-).$$ of experts within dietetics, medicine, speech and provided to the patient, which has shown to language, occupational therapy, nursing, patient result in adverse events such as aspiration and &#5*36#0$0#J3/353-/1$ safety, food science and technology from around incidences of choking.7 This IDDSI pilot study7 the world. The group shared a common aim to identified an incorrect perception that â&#x20AC;&#x2DC;the thicker develop international standardised terminology the liquid, the safer the swallowâ&#x20AC;&#x2122;. However, and descriptors for dysphagia diets that would thickened liquids can contribute to incomplete meet the needs of individuals with dysphagia clearance from the pharynx and a higher risk of !"#$%&&'%$()*+#,-).$*/0$&#12)345-)1$*)#$632#/1#0$7/0#)$5"#$$ 8)#*539#8-++-/1$:55)3;753-/<'"*)#*63.#$=>?$%/5#)/*53-/*6$@32#/1#$$ worldwide.2 aspiration from post swallow residue.1 Patients "5541ABB2)#*539#2-++-/1>-)CB632#/1#1B;D<1*B=>?B$ Currently, there are various different who aspirate very thick liquids tend to have worse E*)2"$=F$G?HI$ ! descriptions available, which essentially use health outcomes, including fatal ones.7,8 Other different terminology, labels, numbers and levels research8 also highlighted that coronial inquests causing great confusion to carers, researchers have identified staff confusion regarding food and healthcare professionals. As modern textures and their labels as factors specifically technology allows the movement of both patients noted to contribute to patient mortality. and health professionals around the world, the The British Dietetic Association (BDA) use of globally recognised terms for foods and has announced its support for the IDDSI liquids has clear advantages for facilitating the framework. They have been working in delivery of safe and quality therapeutic products collaboration with NHS England and a range to individuals with dysphagia.7 Benefits of using of stakeholders over the past two years to the framework not only improve safety risks, explore whether the UK should adopt the but also allow for larger research studies and IDDSI framework.9 The BDA also conducted a systematic reviews, which in turn means a more survey on dietitians in August 2017 regarding robust evidence base around the care of patients the acceptability of IDDSI.9 with dysphagia.

There is ongoing work on developing a toolkit The Research7 completed within dysphagia, for the framework within the UK - a challenging highlighted that a diet consistency formulated by task, but clearly an important part of the successful a SLT should consistently meet certain standards implementation of the IDDSI as supported by the for safety. As there is often confusion with the Kempen study7,10 conducted in Germany in 2015. www.NHDmag.com March 2018 - Issue 132

39

Are you ready for IDDSI? We are!

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SUPPORTING YOU TO SUPPORT YOUR PATIENTS

CONDITIONS & DISORDERS Figure 2: IDDSI timeframe: are you ready?10

The Kempen study7,10 was a pilot study identifying the requirements for implementing the IDDSI framework. It also aimed to develop guidelines and/or resources to facilitate and inform future pilots on the framework.

The study highlighted that the IDDSI is the first to identify that the multi-professional circle of speech and language therapy and dietetics in dysphagia can be increased outside the â&#x20AC;&#x2DC;healthcare team to include the food service team, showing that, through multiprofessional collaboration, food service staff became more aware of their important role in dysphagia, providing safety from choking.

Clinical staff also became more aware of the complexities and time pressures in plating meals in the kitchen.7 This highlights that people can become motivated to change when they experience an issue in practice, which then becomes the catalyst to change. The Kempen study concluded that the appropriate training of entire staff from food service to bedside should be included in implementation of the IDDSI framework to ensure successful implementation.7,10

CONCLUSION

Dysphagia is a disorder of the mechanism of swallowing which has great adverse implications to an individual, including increased mortality and morbidity rates due to the high rate of malnutrition and aspiration pneumonia. Enteral feeding is often indicated post-acute phases of dysphagia; particularly stroke cases, but also can be seen in long-term swallowing disorders as a mechanism of total nutrition support, or supportive feeding.

Modified texture diet and fluids are common practice in the treatment of dysphagia, which, as highlighted in this article, are consistencies that are carefully chosen by a speech and language therapist for an individual, based on their swallowing needs. Discrepancy in the provision of appropriate modified consistencies due to confusion is notably prevalent, due to the availability of different texture descriptors from different medical backgrounds. The IDDSI framework, which has support from both the BDA and RCSLT shall commence in April 2018 in the UK to tackle this discrepancy and confusion with modified textures, with an overall aim for patient safety in patients with dysphagia. www.NHDmag.com March 2018 - Issue 132

41

FOOD & DRINK

FREE-FROM BITES Alex Gazzola Freelance Journalist

A roundup of news and product launches in the world of ‘free from’ and low-FODMAPs.

Alex is a writer specialising in food intolerance, coeliac disease, IBS, restricted diets and ‘freefrom’ food. He is the author of five books and regularly blogs at his site:

It has been a busy early start in 2018 for FODMAPs in the UK. The national IBS charity, the IBS Network, has just announced an exclusive collaboration with UK food distributors Fodmap Easy Ltd, to bring the well-established Australian brand of low-FODMAP sauces and soups into the British market, with a contribution of sales revenue going to the charity. These products are now available through the IBS Network’s online shop (www. theibsnetwork.org/shop) and include a sweet and tasty Roasted Pumpkin Soup, as well as a versatile Red Wine Italian Tomato Sauce, which is free of all 14 EU designated allergens, as well as onion and garlic.

Some products contain one or two allergens, such as celery or shrimp, but never any glutencontaining cereals.

The brand is also available through FODMarket (www.fodmarket.co.uk) - a new online store launched in January.

Founder Linda Collinet has been a follower of a modified-FODMAP diet for over a year and started the business after feeling frustrated at the dearth of low-FODMAP options available in the country. “Many people living in remote locations find it exceptionally hard to buy low-FODMAP convenience foods,” she says, “and FODMarket addresses that.” At the time of writing, the store has around 50 low-FODMAP products, with further plans to extend the offering.

Other stocked brands include Canadian

www. allergy-insight.com

42

www.NHDmag.com March 2018 - Issue 132

brand FODY (who produce snack bars, sauces, and seasonings) and other well-known ‘free from’ brands such as Orgran, Delicious Alchemy, Anila’s Sauces, Difatti, Biona and Amisa.

FODMarket also plans on stocking a new range of low-FODMAP sauces by start-up brand Bay’s Kitchen (www. bayskitchen.co.uk), whose founder Hayley Burdett told us that the launch sauces are Jalfrezi Curry, Tomato & Basil, and Sweet & Sour, with Pancetta Carbonara to follow later in the year. The initial three sauces feature none of the 14 EU-designated food allergens in the ingredients, but precautionary warnings are in place for ‘allergens including nuts’ - although Hayley reassured us that neither seafood allergens nor lupin or sesame are handled in her kitchens.

More launches and their wider availabilities are to be welcomed, of course, but must come with a caveat: as dedicated low-FODMAP brands and products are low in all FODMAPs, but over-reliance upon them should be avoided and patients following the modified-FODMAP plan should always be reminded to consume their own tolerated FODMAPs, within personally safe limits.

WHATEVER MAYO BE

Better known for their Italian sauces and antipasti, including some ‘free from’ sauces such as their gluten-free and dairy-free No.9 Basil Pesto, Saclà have surprised many in the market by launching a vegan mayonnaise

at the start of 2018 (made using a base of sunflower oil and corn starches, plus flavourings). There have been egg-free mayos before, of course, but the bonus USP which Saclà have brought to the table with their launch, is that the product is free of all 14 food allergens. Typically, competing options, such as Mayorice, Chippa, Granovita, Mr Organic and the unflavoured Plamil varieties, all contain mustard and some also include other allergens, such as soya.

Achieving the thick gloopy emulsion of eggcontaining mayonnaise remains a challenge which free-from manufacturers still have to conquer, but the sauce itself is a perfectly decent approximation to its non-vegan counterpart. It works well as a general condiment, in coleslaw and in dips and, if the recipe section of the Saclà website (www.sacla.co.uk) is to be believed, in vegan chocolate cake too. Nutritionally speaking, although the saturated fat content between this and a comparable egg-containing mayo (Hellmann’s Real) is roughly the same, at just over 6% each, the total fat content is substantially lower (56% versus Hellmann’s 79%). Available from Sainsbury’s, Ocado and Co-op, at around £2.29.

MINI BITES

Alpro’s first chilled coffees hit supermarket shelves last month: Caffè Coffee and Soya Caramel, and Caffè Coffee and Hazelnut. Both vegan and dairy free, the producers claim that the products contain ‘30% less sugar than the market reference in ready to drink caffè latte’, but that’s still 5g sugars per 100ml in this case. Best saved as an occasional pick-me-up, then. On the plus side, it’s fortified with riboflavin, B12 and vitamin D. RRP is £2.50 for 1 litre. More at www.alpro.co.uk.

Although only presently available in their homeland of Australia, The Healthy Baker (www.healthybaker.com.au) has released a

world-first product onto the market: lowFODMAP plain wheat flour, which is made, according to its manufacturers, ‘by removing FODMAPs through an all-natural chemicalfree wet extraction process’. Whatever the finer details of the method, it appears to have worked well; the product is certified by Fodmap Friendly and contains only 0.13% fructans, and under 0.1% other FODMAPs, all of which is declared on its nutrition label.

Notwithstanding its gluten-containing status, the product could still be a huge success with non-gluten-sensitive IBS consumers missing that comforting taste of wheat…and ‘real’ bread. Fingers crossed it makes it to these shores in due course.

Scottish start-up Fodilicious (www. fodilicious.com) may not count as a world-first, but is claimed to be a nationwide one for the UK: a food-service provider offering around 20 lowFODMAP freshly prepared meal options, such as chilli con carne and chicken masala curry, using fresh high quality Scottish produce. Launched at the end of February and founded by IBS sufferer Lauren Leisk, the range will additionally be gluten free and dairy free and will include vegan options. Refrigerated van deliveries across parts of Scotland are planned, but courier service in refrigerated cool boxes across UK will be available too. Keep an eye on the website for further meal options.

And, finally, a pretty impressive launch this month which ticks every ‘free-from’ box conceivable: pasta brand Ugo Thrive (formerly Evexia Thrive and distributed by dell’Ugo) has unveiled its new Pumpkin & Sage Raviolini, which is gluten free, vegan and free from all 14 EU food allergens. The product uses a corn and rice blend pasta, and coconut-based cheese alternatives in the filling. Available from Sainsbury’s and Waitrose, and we wouldn’t be surprised to see it become a firm favourite for families dealing with multiple food allergies at home.

Looking for a particular type of low FODMAP product?

Need a ‘free-from’ or allergy-safe recommendation for a patient?

Contact Alex: info@alexgazzola.co.uk www.NHDmag.com March 2018 - Issue 132

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PRESCRIBING CHALLENGES IN METABOLIC DISEASE - FOCUS ON PKU Suzanne Ford NSPKU Dietitian for Adults Suzanne Ford is a Metabolic Dietitian working with Adults at North Bristol NHS Trust and also for the National Society of Phenylketonuria).

REFERENCES Please visit the Subscriber zone at NHDmag.com

In metabolic disorders of protein metabolism, e.g. Maple Syrup Urine Disease, Tyrosinaemia Type 2 and homocystinuria, dietary treatment via a low-protein diet and precursor-free protein substitutes are a key part of treatment.

Specialist dietary products on prescription are often necessary to achieve best clinical and patient outcomes - this is also true of phenylketonuria (PKU).

The NHS is the only provider of prescribable products in the Home Countries of England, Scotland, Wales and Northern Ireland, and when a dietary product achieves Advisory Committee on Borderline Substances (ACBS) approval, there is an expectation from patients and clinicians, that these products will then become available on prescription via general practitioners across the UK and that access will be according to clinical need.

In England, GPs operate Clinical Commissioning Groups (CCGs), of which there are 207, accounting for two thirds of NHS Englandâ&#x20AC;&#x2122;s total budget or ÂŁ73.6 billion in 2017-2018.

Each CCG is responsible for the health of a population ranging from under 100,000 to 900,000, although their average population is about a quarter of a million people. NHS England Manual for Prescribed Specialised Services 2017/18 sets out the responsibilities of CCGs towards treatment of people with metabolic diseases under the heading What Clinical Commissioning Groups (CCGs) commission: CCGs, via GPs, are responsible for the ongoing prescription of all specialist dietary products for patients with IMD (inherited metabolic diseases), once initiated by the (Metabolic) Centre.

The NSPKU helpline, from enquiries and countless discussions with dietitians, reveals that some CCGs do not provide unfettered access to prescribable products to patients with PKU and there are many points in the

process of prescription and dispensing and delivery of products where undesirable treatment interruptions can occur.

TREATMENT OF PKU - WHAT DO PATIENTS NEED?

PKU is treated with a very low-protein diet necessitating specialist low-protein products to provide energy and variety.

A protein substitute providing amino acids without the phenylalanine (Phe) neurotoxic to people with PKU is an essential requirement.2 Currently in the UK, there is no pharmaceutical treatment available (although available in 24 other European countries as well as in the USA). The European Guidelines for Diagnosis and Management of PKU published in The Lancet in 2017 state that stricter blood Phe control is needed than was previously thought.3 The diet for people with PKU needs to be more rigorously applied than ever before; the guidelines also state that diet for life is needed, based on a significant body of evidence describing poor neurological outcomes if treatment is stopped.

COMPLICATIONS AND CONSEQUENCES OF UNDER TREATMENT OF PKU

The rationale for PKU treatment is to achieve strict blood control to prevent any brain damage or impairment in children,4-7 and avoid the reduced life chances via reductions in IQ, which are seen currently when children with PKU are compared to their non-PKU siblings.8-9 www.NHDmag.com March 2018 - Issue 132

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Ready to drink

Lowest volume‡

Lowest calorie^

Spoonable option

LIFE WITH PKU DON’T LET ANYTHING STOP YOU ^ PKU Lophlex Powder is the lowest calorie protein substitute, per 20 PE portion, for patients aged 8 years onwards. ‡ PKU Lophlex Powder is the lowest volume powder protein substitute for 20 PE available for use.

The PKU Lophlex range are Foods for Special Medical Purposes used in the dietary management of PKU and must be used under medical supervision of a Healthcare Professional.

This information is intended for Healthcare Professionals only.

The specialist low-protein products are needed to provide variety to children and adults, as their products are neither available in supermarkets, nor in health food shops in the way that gluten-free products now are.

The accumulated evidence is now clear that adults with uncontrolled blood phenylalanine levels are compromised in their executive function, their mental health and their psychosocial outcomes.10-14 PROTEIN SUBSTITUTE USE IN PKU

Protein substitutes are essential when a very low Phe diet is prescribed. They provide protein/ nitrogen when micronutrient requirements must be met and support good blood phenylalanine control.15,16 The products should be taken at least three times daily, every day of a patientâ&#x20AC;&#x2122;s life, following diagnosis and, thus, a range of palatable products are essential.17,18 A reminder: the nutrients being substituted are macro as well as micronutrients, thus daily doses of substitutes are high, e.g. 80 tablets per day for a 55kg woman.

Evidence tells us that this is the most burdensome aspect of the diet and that if patients are without protein substitutes, or are under treated with it, many nutritional deficiencies emerge, such as osteoporosis, B12 deficiency anaemia and protein deficiency. There have been considerable efforts in the last 30 years to develop these products to aid optimum safety, tolerance efficacy and palatability. Most protein substitute products contain micronutrients and, more recently, have added docosahexaenoic acid - for use in pregnancy as well as for infants and children.19 Finally, but very importantly, as well as reducing protein or micronutrient deficiencies, the protein substitutes provide protection (through provision of amino acids) against high blood phenylalanine levels by reducing catabolism and promoting anabolism.

PROTEIN SUBSTITUTE RANGE AND PRODUCT DEVELOPMENT IN PKU

The NSPKU firmly advocates for the widest range of protein substitutes to be available for patients with PKU. Patientsâ&#x20AC;&#x2122; clinical needs must be met, e.g. infancy, weaning, childhood, pregnancy, both higher and lower calorie formulae subject to growth needs.20 Pre-prepared liquid protein substitutes and formulae have some clinical advantages to powders and there is a variety of different presentations available to patients.21, 22 Protein substitute choices have recently expanded to include glycomacropeptide (GMP) powders and liquids. These are reported to have high levels of patient acceptability (reduced acidity compared to amino acids and also a lower osmolarity, so reducing osmolar effects on the gut). However, in some areas, GPs and CCG Exceptions Panels have declined to fund GMP products for PKU patients. Future development of better protein substitutes to improve acceptability and compliance is essential for better outcomes in PKU. The need for these products to be fully supported by prescribing bodies providing efficacy, safety and acceptability data, is unequivocal in PKU. LOW-PROTEIN PRODUCTS

The specialist low-protein products are needed to provide variety to children and adults, as their products are neither available in supermarkets, nor in health food shops in the way that gluten-free products now are. If these products are used insufficiently, then energy intake is compromised, and endogenous phenylalanine is released through catabolism, or the individual is hungry and is likely to eat higher protein food choices, resulting in loss of metabolic control. www.NHDmag.com March 2018 - Issue 132

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IMD WATCH

With the consolidation of evidence in the European Guidelines and acceptance that the PKU diet is for life, the reported frequency of interruption of the only treatment available is unacceptable.

Scottish research (undertaken before glutenfree food prescription was questioned), outlines the negative experiences and obstructions which people with PKU have experienced when attempting to access prescribable low-protein products. Half of those surveyed had experienced comments on their prescription and 60% of the comments were negative.23 It is not uncommon for patients or parents to feel humiliated and frustrated by either the system, or by staff within primary care, and when no food is accessible, a hungry and uncontrolled patient is the result.

The level of restrictions involved in this diet are such that it is not possible for most patients to maintain metabolic control without prescribable foods24 as hunger would be overwhelming.

CURRENT BARRIERS TO METABOLIC PRESCRIPTIONS

Difficulties at prescriber level The first and main barrier is a lack of understanding within primary care about the needs of metabolic patients. Doctors, receptionists and prescribing administrators are often disbelieving of the number of items required by someone on a low-protein diet, because they do not understand: • the degree of protein restriction; • the presence of protein in starchy staples such as wheat and potatoes; • that prescribable low-protein products are not available in the supermarket in the same way that gluten-free products now are; • that protein substitutes are not all the same; palatability/acceptability is a factor in clinical effectiveness - unlike non-dietary prescriptions.

CCGs, as with the rest of the NHS, are under financial pressure to make efficiency savings and use different approaches for this.

For instance, some CCGs may circulate Quality Information Newsletters for Pharmacists 48

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and Prescribers in Primary Care (PrescQIPP) bulletins, outlining costs of PKU treatment and the evidence for it. Some CCGs use medicines optimization, or prescribing advisor dietitians, to search for PKU patients on the primary care databases and script scrutiny is undertaken in conjunction with a review of a PKU patient’s body mass index. The specialist metabolic dietitians may then be contacted to answer questions about the presence of cakes, biscuits, or carbohydrate-based items on the prescription list. It’s possible that these community dietitians are, along with GPs and pharmacists, unfamiliar with the degree of protein restriction faced by PKU patients.

It is likely that the only information they will have received about PKU will have been as part of university training (likely minimal time assigned to it, due to the rarity).

Some CCGs use formularies of the cheapest medications for common primary care medicines, such as anti-hypertensives for instance, and the CCG, may use software called ‘ScriptSwitch’ to identify for any given prescribable medicine, a cheaper alternative to the one inputted into the prescription system. This may be a very successful system for non-dietary medications, however, when dietary treatment adherence is closely linked to patient acceptability and choice, ScriptSwitch is likely to be inappropriate in leading to cost effective PKU treatment.

With regards protein substitutes, the cost of the single item prescribed is relatively high and in some CCGs, this has triggered ‘Expensive Medicines’ processes for prescription approval, including, in more than one case, an Exceptions Panel or committee within the CCG declining (after original submission and appeal) to prescribe, or provide, the protein substitute requested. Some CCGs wish to develop formularies for metabolic products - this would curtail current treatment access and also future treatment development.

Possible solutions must all be considered for patient acceptability, clinical efficacy, clinician readiness and, of course, financial and administrative feasibility and long-term sustainability.

Difficulties at dispensing stage Community pharmacies are local outlets who might make a rapport with patients they know well. However, we know from financial incentive and reimbursement structures that community pharmacies and pharmaceutical wholesalers are not the best outlets through which to have unusual small volume prescriptions dispensed.

Monthly deliveries from metabolic companies themselves have been seen to be the answer throughout England. In the case of Scotland and Wales, free prescriptions have meant difficulties using some of the company delivery systems.

Again, because of volumes, the reliability of even the company delivery systems has come under some question, as patients are left without products, face interrupted treatment, loss of metabolic control and the clinical sequelae thereof (irreversible brain damage in the case of young PKU patients).

POTENTIAL SOLUTIONS

With the consolidation of evidence in the European Guidelines and acceptance that the PKU diet is for life, the reported frequency of interruption of the only treatment available is unacceptable. Possible solutions must all be considered for patient acceptability, clinical efficacy, clinician readiness and, of course, financial and administrative feasibility and longterm sustainability.

Could all metabolic dietitians become independent prescribers for instance? This might work in the long term, but senior managers would need to ensure that the ‘money follows the patient’ and the ramifications of a centre serving >30-40 CCGs for example, mean a large amount of cross checking, plus, the employment of script administrators in the metabolic centres might be necessary.

Reworking the current home delivery system to become 100% gold standard would be ideal and a centralised one-stop-shop with online choice for patients in units of foods per month, might be the most patient-friendly and clinically effective system. However, would a centralised system be more vulnerable to cost and efficiency targets?

Finally, is the ACBS system under scrutiny as a whole and is de-prescribing a consideration?

There are many factors to consider. There may be opportunities and threats to treatment access inherent in any changes made; however, the current situation is extremely challenging.

The NSPKU have a campaign underway to facilitate the PKU community, to gain improved treatment access. This is one issue to be considered closely. For better clinical outcomes and improved quality of life for metabolic patients, these challenges must be met head on. Watch this space.

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

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

www.NHDmag.com March 2018 - Issue 132

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NETWORK HEALTH DIGEST

Coming in the April issue: • CMPA: food ladders

• Eating disorders: understanding and compassion • Standard emergency regimens • Nutrition and dementia • Home enteral feeding _______

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SKILLS & LEARNING

CLINICAL RESEARCH IN DIETETICS Kaylee Allan Registered Dietitian ICU dietitian, Southmead Hospital Bristol Kaylee works as a Critical Care Dietitian in Bristol as well as undertaking a MClinRes part-time with Plymouth University. Her interests are ICU, research and sports nutrition.

This article will discuss how to get involved with research and develop a research career within dietetics.

When I was graduating from University nine years ago, had someone told me that “research will be your future,” I would have laughed. Yet, for the past seven years, I have been part of a small research team of dietitians within critical care. Although small, our team produces multiple papers each year, focusing on topics which impact on our daily practice.

My research journey started with an interest and an opportunity. Fortuitously, I was able to shadow someone with significant research experience who encouraged me to get involved. In the initial stages I helped with data collection and then developed skills in writing patient information sheets, organising research site files and obtaining consent.

AN INTEREST AND AN IDEA

It might sound obvious to have an interest in the topic you wish to research, but I believe it’s essential to be interested enough to undertake a project in the first place.

Accept that the journey, from planning to publication, can be challenging.

Developing a potential research question from a small idea can be difficult, but it is a good starting point.

Here are some suggestions to help your ideas flourish: Talk to colleagues If you find someone who is interested in the same area, team up and start the ball rolling. Having a mixture of professionals can give an extra dimension, so don’t be afraid to ask.

Use Twitter The power of social media can connect you to experts and like-minded indi-

viduals who can signpost you towards useful papers, websites and resources.

The Critical Care Specialist Group Twitter account is very active and extremely useful (@BdaCare). Twitter can be used for following along at conferences and can alert you to new ‘hot off the press’ publications. There is often some inspiring dialog between experts which may trigger ideas.

Use a notepad Keep this with you at all times, from wards and meetings to bathroom and bedroom. You never know when that idea might pop into your head.

Additionally, keep minutes from research meetings. Not only does this keep you on track, but it also acts as a useful list for establishing the next steps.

Utilise resources In addition to social media, speak with colleagues who are research active, find out about in-house training which can boost your research career. Also, look further afield, discuss with your specialist group or the British Dietetic Association (BDA) research officer. For me, the specialist group has been fantastic for collaboration and also for those important discussions. If inspiration is what you need, find those like-minded colleagues.

Keep your eye out for study days Take a look at the BDA research symposium and sign up to receive the Research Ezine: www.bda.uk.com/ professional/research/symposium Consider the time the project will take, including developing the idea, undertaking a literature review, data www.NHDmag.com March 2018 - Issue 132

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SKILLS & LEARNING collection and disseminating your findings.

Research is not a quick process; to do it right, consider if your caseload will allow for the additional work you intend to do. Don’t set yourself up to fail.

If funding is what’s stopping you, start with the BDA. There are small grants worth applying for within the BDA, but also elsewhere, often the challenge is knowing how to access the money pot.

KNOW THE LITERATURE AND EXPLORE METHODOLOGIES

THE ART OF WRITING

If time is limited, ask your hospital or university library for help with searching for the current literature. Read around your topic. Know what the current literature is within your area. What is known and unknown? What does your question add to the body of evidence? Then consider what methodology will answer that question.

Avoid jumping in with a randomised control trial (RCT) if you’ve never undertaken research before. Be realistic, start small and learn from the process as much as from the findings. I’d suggest writing a review of the literature; undertake a service evaluation, or a snap-shot audit of current practice. Explore current practice and how this compares to local and international guidelines.

Test your protocols: are they being adhered to?

Collect the data and immerse yourself in it. In my experience, even small audits can be good enough to change practice.

To help with writing a literature review or selecting the appropriate methodology, use your Research and Innovation department (R&I). My local R&I hold research evenings to showcase local work and offer small grants for projects. Of course, events like this are excellent for networking! Make sure you are on the Trust email distribution list, so you hear about the grants and how to apply for them. Attend a Good Clinical Practice session (GCP) - this is an absolute must for anyone looking to becoming more research active.

Furthermore, I have spent time with my local Research Design Service (RDS). The National Institute for Health Research (NIHR) funded RDS is free to access. Personally, I have gained a great deal from using the experts on hand (face to face and via email). The RDS is available throughout the UK (more information opposite) where the team can help set up studies and projects. There is even support with refining and perfecting the research question, to ensure the project aim and outcome measures help answer it.

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Whether it’s an assignment or a review paper, often writing can be the most challenging aspect to master. I’ve gained a lot by volunteering to write articles and asking my colleagues for feedback.

Additionally, reading more will enable you to adopt a style which suits you. I’ve been fortunate enough to attend sessions on writing for publications within my University taught lectures and externally. Here are some useful tips on writing: Get the right writing environment This will vary depending on your own personal learning preferences. If you need absolute silence, then a busy café may not be conducive for you.

Find a space that allows you to be relaxed and comfortable to start writing.

Give yourself time Set aside time to write. Whether that’s 20 minutes in the evening, or an hour at lunchtime, make time. Protect that time and use it wisely.

Some people work better under the pressure of a deadline, but a suitable workspace and time to produce good work is essential. Set an alarm, every 20-30 minutes, to take a break from the computer, but make sure the time sat in front of it has been constructive.

Five- minute free writing On day one of my MClinRes, a lecturer made us write on our subject, non-stop for five minutes.

This was a worthwhile task to do for two reasons: firstly, it gives you the time to put pen to paper and secondly, you’ll start to write! I was amazed how much I could write in only five minutes and how useful this process was to focus my mind.

Get someone to proof read your work This is beneficial, particularly if you are writing a lay summary or participant information sheet.

Having someone else proof read often leads to constructive feedback and can pick up on grammatical errors and flow. Don’t be offended,

Table 1: Valuable twitter accounts to follow if you are finding writing difficult Name of account

Twitter name

Write for Research

@write4research

Write that PhD

@writeThatPhD

Fast Track Impact

@fasttrackimpact

Explore Style

@explorestyle

Table 2. Key websites

British Dietetic Association (BDA)

www.bda.uk.com/professional/research/home www.bda.uk.com/about/trustfund/home Twitter accounts: @BrDieteticAssoc (British Dietetic Association) @bdaprof (BDA Education and Professional Development Team) @JudyLawrence7 (BDA research officer) Permission gained to use this twitter account For ICU (non-twitter people) use the Facebook group and search for the BDA Critical Care Specialist Group. Twitter: @BdaCare

National Institute for Health Research (NIHR)

www.nihr.ac.uk/funding-and-support/funding-for-training-and-career-development/ training-programmes/ www.nihr.ac.uk/patients-and-public/how-to-join-in/ www.nihr.ac.uk/about-us/how-we-are-managed/our-structure/research/researchdesign-service/

try and use the comments to improve your work.

Remember, your audience might not know the technical terminology you use, so make it clear.

Mind maps Write down key points under each of the main headings (such as; introduction, results, conclusion). Bullet points will help you to plan your paper and can focus the mind, should it start to roam.

PURSUING A RESEARCH CAREER

For me, I needed to find the next step after we published our RCT. I enjoyed the whole process (and although stressful), I particularly enjoyed disseminating our findings at conferences and publishing results in academic journals.

To gain a better understanding of health research, I decided to embark on an NIHR funded MClinRes course with Plymouth University. This was the perfect opportunity to have the time to undertake a project that Iâ&#x20AC;&#x2122;d been meaning to do. Additionally, the resources and support from academic supervisors is invaluable. The MClinRes has not only improved my understanding of setting up and undertaking a project, but has refined me as a clinical dietitian.

This is the first step on the ladder in terms of a career in research, and the NIHR offer multiple pathways to becoming an independent, active researcher.

LEARN FROM YOUR MISTAKES

I would encourage you to reflect and learn from mistakes made. I can recall moments early on in my research journey where I had made mistakes such as, missing data and stumbling over my words when trying to consent a patient. Mistakes happen, but try to learn from these and be resilient. Learning the hard way often makes you a better researcher. I always encourage people to ask questions, it might prevent mistakes from occurring.

CONCLUSION

I would encourage any dietitian to become more research active and publish work. Research will boost your learning and development, benefit your patient groups and promote dietetics within your remit.

Start with small ideas and build on them, volunteer to help out with data collection and access free resources available to you, if inspiration is what you need. Ask as many questions as you can, to anyone willing to hear your idea. Research is an excellent string to a dietetic bow. www.NHDmag.com March 2018 - Issue 132

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DATES FOR YOUR DIARY

STUDY DAYS 2018 AT THE ROYAL MARSDEN, LONDON Wednesday 9th May Targeted treatments for cancers of the digestive system - a bird’s eye view Thursday 12th July GI Study Day for Nurses Both events to be held at: The Royal Marsden Education and Conference Centre, London SW3 6JJ. For more information and to book your place please visit: www.royalmarsden.nhs.uk/studydays Paediatric Nutrition 10th-11th March University of Nottingham School of Biosciences Modules for Dietitians and other Healthcare Professionals www.nottingham.ac.uk/biosciences National Salt Awareness week 12th-18th March www.actiononsalt.org.uk/awareness

Nutrition and Hydration Week 14th-20th March www.nutritionandhydrationweek.co.uk BDA Live 2016 16th-17th March Incorporating the BDA’s 80th birthday celebrations QEII Centre, Broad Sanctuary, Westminster, London SW1P 3EE www.bdalive.co.uk Advancing Dietetic Practice in Diabetes 21st March 2016 Training by the British Dietetic Association London Road Community Hospital, Derby www.ncore.org.uk Understanding Behaviour Change 22nd March 2016 University of Nottingham School of Biosciences Modules for Dietitians and other Healthcare Professionals www.nottingham.ac.uk/biosciences More events on our website here . . .

dieteticJOBS.co.uk dieteticJOBS.co.uk

• 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 (local rate) 54

www.NHDmag.com March 2018 - Issue 132

01342 824073

PKU VOICES Louise Robertson Specialist Dietitian Louise is an experienced NHS dietitian specialising in the fascinating area of inherited metabolic disorders in adults. In her spare time she enjoys running her blog ‘Dietitian’s Life’ with her colleague and good friend Sarah Howe. www. dietitianslife.com

Reference 1 van Wegberg AMJ, MacDonald A et al. The complete European guidelines on phenylketonuria: diagnosis and treatment (2017).

Orphanet J Rare Dis. 2017 Oct 12; 12(1): 162. doi: 10.1186/s13023017-0685-2

In January, I was invited by the NSPKU (National Society for Phenylketonuria in the UK) to attend their event: ‘Listening to the experience of people living with PKU’.

As inherited metabolic disorders, including PKU (incident 1:10,000), are quite rare in the general population, there is little public awareness of these disorders. People haven’t heard of PKU, but they do remember that babies have a heel prick test in their first five days of life.

They don’t realise that PKU is one of the disorders screened for on this test, or the brain damage high phenylalanine (Phe) concentrations can cause if not picked up at birth. Everybody has heard of cystic fibrosis (incident 1:2,500), which is also screened for in the same heel prick test.

Both disorders need intensive medical and dietetic support, yet PKU is lagging behind in services and what can be offered to them in the NHS. A low Phe diet is the mainstay of treatment in the UK (cost £12,000 plus per year), but the diet is very restrictive and affects quality of life, meaning that a lot of adults relax, or stop, their diet altogether, which also leads to a poor quality of life (against current guidance of diet for life1). Dietitians and patients are frustrated at the current UK prescription system that is set up for drugs, not special dietary foods, making it difficult to get the correct dietary products to maintain the diet. There is a drug option (BH4) that could allow 2040% of people with PKU to relax their diet, making it easier to follow, while still maintaining low phenylalanine concentrations. Turn to page 45 for more on prescribing in metabolic disease.

The event by the NSPKU was to highlight the difficulties of people with PKU and to raise awareness to the public and parliament, to help

fight for better access to services and drug treatments. The event was held in London and hosted by Liz Twist MP. In Liz’s constituency lives a little boy with PKU whose parents had come to her for support to raise awareness and fight for access to drug treatments.

Liz Twist introduced the evening, followed by Professor Anita MacDonald who reported on the NSPKU survey that had been filled out by 600 people with PKU. The main themes coming out of the survey include the difficulty of the very strict low Phe diet, the difficulties sticking to it (children and adults) and the impact of the stress on that person and their family managing it, plus the problems if it is relaxed.

The worry and anxiety of pregnancy for women is highlighted (high Phe concentrations during pregnancy cause brain damage to the unborn child), as well as the frustration that drug options are not available in the UK in the same way that they are in the rest of Europe and in the US. Eric Lange the chairman of the NSPKU closed the event and summed up that, ‘PKU is a hidden condition which is easily ignored and, very often, misunderstood’. An all-party parliamentary PKU group has now been set up which will meet to help improve the lives of those with PKU. It was a very interesting and moving event, highlighting that people with PKU need better support in the UK. A lot of the symptoms are hidden as people put on brave faces, but delve into how they are coping and living their lives, it is a different story. www.NHDmag.com March 2018 - Issue 132

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