nhd magazine july 2015

Issue 106 July 2015NHDmag.com

paediatric food allergy

Susan WoodSpecialist Dietitian, Ketogenic Therapies

Ketogenic therapy for adults with drug resistant epilepsy. . . p28

ISSN 1756-9567 (Online)

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from the editor

Chris rudd nHd editor

Chris rudd’s career in continuous dietetic service has spanned 35 years. She is now working part time with the Sheffield PCt medicines management team, as a dietetic Advisor.

Welcome to a wide variety of articles for you to feast your eyes on and i hope there is something for everyone.

Obesity in post liver transplant patients is an increasing problem which is under recognised with no definite guidelines for surveillance or treatment. Susie Hamlin and Julie Leaper’s comprehensive article Weight gain and obesity after liver transplan-tation provides that problem-solving ap-proach of what to do, when and how. Keep-ing with the obesity theme, Mary O’Kane provides us with Bariatric surgery and the importance of nutrition. This article covers the eligibility for bariatric surgery and its impact on diet and nutrition and helps us learn more about NCEPOD, BOMMS sur-vey and guidance and also about the GP guidance. Pregnancy may be challenging for many mums-to-be, but have you thought about what happens if that mum-to-be has Phenylketonuria? Pau-la Hallam and Sarah Ripley explain Maternal PKU which includes the key chal-lenges of the diet, including a case study of Nicola. The outcome is that 99 percent of the babies born to PKU mums will not have PKU, a truly healthy reward. Prescribing costs and appropriate pre-scribing may be of interest to many who work with Medicines Management Teams. Cows’ milk allergy seems to be a well dis-cussed topic and this month; Juliana Scap-in covers Cows’ milk allergy specialist for-

mulae: appropriate prescribing. What do we need to know?

Again, it shows that a dietitian who is ‘ad-vising the right product for the right pa-tient for the right length of time, will not only save money, but can enhance patients’ clinical outcomes and safety’. Patient feedback and receiving com-ments about their experience of care is vi-tal and having the carer’s feedback is also welcomed. Home enteral tube feeding services - five years of change: a view from patients and carers looks at a small retrospective survey of home enterally tube-fed patients and their carers, conducted by Gillian White. Positive outcomes and a patient-centred approach to care are highlighted. The ketogenic diet has been used as a treatment for epilepsy since the 1920s, pre-dating most anticonvulsant drugs. Coconut and raspberry yoghurt looks de-licious! Interested in finding out more? Su-san Wood offers Ketogenic therapy for adults with drug resistant epilepsy: time it was on the menu for adults, which tells us so much. Finally, may I also draw your atten-

tion to the planned BDA award in the

memory of Professor Pat Judd

and her work (see page 9). Dona-

tions to this award would be gratefully

received, with the aim to raise enough money to support a PhD for a dietitian.

NHDmag.com July 2015 - Issue 106 3


6 News Latest industry and product updates

10 Professional profile elsie Widdowson - a pioneer in dietetics

21 Maternal PKU nutritional challenges past and present

28 Ketogenic therapy for adults with drug resistant epilepsy

35 Liver disease nutrition after liver transplantation

39 Bariatric surgery the importance of nutrition

48 Web watchonline resources and updates

50 dieteticJOBS Latest career opportunities

51 Events and courses upcoming dates for your diary

52 Conference update Critical dietetics 14th-16th august

54 A day in the life of . . . a renal dietetics assistant

45 The final helping the last word from neil donnelly

13coVer Storypaediatric food allergy

editorial panel

Contents

editor chris rudd rDfeatures editor Ursula arens rDdesign Heather DewhurstSales richard Mair [email protected] Geoff Weatepublishing assistant Lisa Jackson

address Suite 1 Freshfield Hall, The Square, Lewes road, Forest row,east Sussex rH18 5eSphone 0845 450 2125 (local call rate) fax 0870 762 3713email [email protected] www.NHdmag.com www.dieteticJoBS.co.uk

all rights reserved. errors and omissions are not the responsibility of the publishers or the editorial staff. Opinions expressed are not necessarily those of the publisher or the editorial staff. Unless specifically stated, goods and/or services are not formally endorsed by NH Publishing Ltd which does not guarantee or endorse or accept any liability for any goods, services and/or job roles featured in this publication. contributions and letters are welcome. Please email only to [email protected] 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.

@NHdmagazine

Chris rudd, Dietetic advisorneil donnelly, Fellow of the bDaursula arens, Writer, Nutrition & Dieteticsdr Carrie ruxton, Freelance Dietitiandr emma derbyshire, Nutritionist, Health Writeremma Coates, Senior Paediatric Dietitiandr margaret ashwell, (Public Health), research FellowJuliana Scapin, Paediatric Dietitianpaula Hallam, Dietitian advisor NSPKU Sarah ripley, adult Metabolic DietitianSusan Wood, Specialist Dietitian, Ketogenic TherapiesSusie Hamlin, Senior Specialist HepatologyJulie Leaper, Senior Specialist Hepatologymary o’kane, consultant Dietitian (adult Obesity), gillian White,DietitianCharlotte Jennifer-Louise routen, Nutritionist/Dietetics assistant

6 News Latest industry and product updates

10 Professional profile elsie Widdowson - a pioneer in dietetics

21 Maternal PKU nutritional challenges past and present

28 Ketogenic therapy for adults with drug resistant epilepsy

35 Liver disease nutrition after liver transplantation

39 Bariatric surgery the importance of nutrition

45 Home enteral tube feeding five years of change

48 Web watch online resources and updates

50 dieteticJOBS Latest career opportunities

51 Events and courses upcoming dates for your diary

52 Conference update Critical dietetics 14th-16th august

54 A day in the life of . . . a renal dietetics assistant

56 The final helping the last word from neil donnelly

57 Subscribe to NHD Magazine Special offer for July only

13coVer Storypaediatric food allergy

editorial panel

Contents

NHDmag.com July 2015 - Issue 1064

editor chris rudd rDpublishing director Julieanne Murray publishing editor Lisa Jacksonpublishing assistant Katie Dawson design Heather DewhurstSales richard Mair [email protected]

address Suite 1 Freshfield Hall, The Square, Lewes road, Forest row,east Sussex rH18 5eSphone 0845 450 2125 (local call rate) fax 0844 774 7514email [email protected] www.NHdmag.com www.dieteticJoBS.co.uk

all rights reserved. errors and omissions are not the responsibility of the publishers or the editorial staff. Opinions expressed are not necessarily those of the publisher or the editorial staff. Unless specifically stated, goods and/or services are not formally endorsed by NH Publishing Ltd which does not guarantee or endorse or accept any liability for any goods, services and/or job roles featured in this publication. contributions and letters are welcome. Please email only to [email protected] 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.

@NHdmagazine

www.NHdmag.com

www.dieteticJoBS.co.uk



mailto:[email protected]


https://twitter.com/@NHDmagazine

http://www.nhdmag.com/ourshop/cat_520243-NHD-subscriptions.html

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neWS

Eating habits which are not in line with our evolutionary progress are thought to be fu-elling an epidemic of obesity and diet-related diseases, such

as cancer and cardiac problems. Now a new review has looked into this in more detail.

The article exploring how nu-trition influenced the development of Homo sapiens concluded that geneti-cally, we are still stone-age hunter-gath-erers who thrive on lean meat, fruits, vegetables and nuts, but, environmen-tally, we are surrounded by foods laden with sugar, simple carbohydrates and the wrong type of fats. Overall, the evidence base identified that we were likely to have evolved as

omnivores with animal products play-ing a key role in brain development and acquisition of skills. In addition, the same evidence noted that trialists who ate a diet of lean meat, fruits, vegetables and nuts, while avoiding cereal grains, dairy and legumes had lower blood pressure and lower blood levels of glu-cose, LDL cholesterol and triglycerides after just 10 days. And other evidence revealed significant reductions in body weight, waist measurement and blood pressure. Hence, later shifts towards a cereal-based diet are likely to have happened too suddenly for our genome to adapt appropriately. This, in turn, is likely to have increased non-communicable dis-ease risk.

Past work has looked at how certain nuts affect blood pressure, but find-ings have been mixed. Taking this on board, a new meta-analysis has pooled data from 21 randomised con-trolled trials. Findings showed that pistachios significantly reduced systolic blood pressure (P=0.002), while both pista-chios and mixed nuts led to significant reductions in diastolic blood pressure (P=0.04). These findings were most apparent in subjects without Type 2 diabetes. Overall, eating pistachios may help to reduce both systolic and diastolic blood pressure in healthy adults with-out Type 2 diabetes. Eating mixed nuts may also help to lower diastolic blood pressure. For more information see: Moham-madifard N et al (2015) American Jour-nal of Clinical Nutrition Vol 101 no 5, pg 966-982.

NutS aNd Blood preSSure: NeW meta-aNalySiS

NeW eufic article oN geStatioNal diaBeteSGestational diabetes is fast becoming a rising health concern in pregnancy. Now, a new article published for the European Food Information Council (EUFIC) looks into the wider implications of this. Most importantly, gestational diabetes (i.e. when a woman’s blood sugar levels in pregnancy become higher than normal) can affect the health of the mother and her baby. Over-growth of the foetus, leading to the delivery of larger babies (macroso-mia) and subsequent delivery complica-tions, are the main concerns, along with increased risk of pre-eclampsia. Being a healthy body weight before becoming pregnant, being physically ac-tive, eating a diet that includes plenty of wholegrains, lean proteins, oily fish and polyunsaturated and monounsaturated fats, are key messages that should be communi-cated to women of childbearing age. Intakes of foods and drinks with a high glycaemic index should be kept to a minimum. For more information see: Derbyshire EJ (2015) Food Today. Available at: www.eufic.org/article/en/artid/The_rising_concern_of_gestational_diabetes/

So, WHat did adam aNd eVe eat?

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neWS

As well as looking at food intakes in the UK, it’s important to look at trends in other parts of Eu-rope. New data has now been published from the German National Nutrition Survey (NVS II) which measured food intakes in 15,371 subjects aged 14 to 80 years, comparing this with German Nutrition Society (DGE) guidelines. The survey found that German men consume twice as much meat and soft drinks and drink six times more beer than women. Women, however, tend to eat more vegetables and fruit and drink more herbal/fruit tea. Older subjects consume less meat, fruit juice/nectars, soft drinks and

spirits, but more fish, vegetables, fruit and herb-al/fruit tea than younger adults and teenagers. People from lower socio-economic groups also eat more meat/meat products and drink more soft drinks and beer. Overall, these findings show that German males, younger populations and lower socio-economic groups have the most concerning food intake patterns, with a tendency for these to fall short of official dietary guidelines. For more information see: Heuera T et al (2015) British Journal of Nutrition Vol 113 Issue 10, pg 1603-1614.

pareNtS iNflueNce oN cHildreN’S eatiNg HaBitSEmotional eating can lead to childhood obesity, but where does this stem from? Now, latest work has looked at how parental control in early life may play a role in this. The study recruited 41 parents with a child aged between two and five years. Baseline data about feeding practices was collected and then families were followed up again two years later. At this point parents were observed feeding their children who were then exposed to an emotional stressor or a control and snacking habits were monitored. Results showed that parents who used food as a reward, or restricted food for health reasons in the earlier years, were more likely to have chil-dren who ate more under conditions of negative emotion at age five to seven years. These are interesting findings implying that par-ents who overly control their children’s food intakes may be doing more harm than good. This may inadvertently lead to chil-dren relying on palatable foods to cope with neg-ative emotions. For more in-formation see: Farrow AV et al (2015) the American Journal of Clinical Nutri-tion. Vol 101 no 5, pg 908-913.

maiN SourceS of Sodium after BirtHSodium intakes are high in the US and this trend starts early in life. New data from the highly-regarded National Health and Nutrition Examina-tion Survey (NHANES 2003-10) has now

looked into the main exposures during the first two years of life. Data was analysed from 778 infants aged 0-5.9 months, 914 infants aged six to 11.9 months and 1,219 toddlers aged 12 to 23.9 months. It was found that sodium intakes were lowest in the youngest children but exposures increased with age. With weaning (six to 11.9 months) commer-cial baby foods, soups and pasta mixed dishes provided extra sodium. In the oldest age group cheese and sausages were some of the main sources of sodium. Restaurant foods also pro-vided nine percent of sodium. Overall, this shows that most sodium comes from foods other than infant formula or human milk once children begin weaning. It also high-lights the need to educate parents about how restaurant settings can increase children’s ex-posure to sodium. For more information see: Maalouf J et al (2015) American Journal of Clinical Nutrition Vol 101 no 5, pg 1021-1028.

takiNg a look at tHe germaN NatioNal NutritioN SurVey ii


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neWS

Wholegrains (WGs) are undoubtedly impor-tant for health, but, at times, comparing find-ings between studies can be cumbersome. Now, conclusions from a new paper published in The American Journal of Clinical Nutri-tion recommends several approaches to ease this. These include reporting WG intakes in grams, as dry weight; defining the term WG in the paper; describing the different types of grain used; describing the structure of grains used, i.e. intact, crushed, partially milled etc; describing the products and processes used to make the WGs. Most recently, median WG intakes (on a dry weight basis) were measured in the UK 2008-11

National Diet and Nutrition Survey. Data analy-sed from 3,073 people showed that median WG intakes were 20 grams per day for adults and 13 grams per day for children, with teens and young adults having some of the lowest intakes. Interestingly, 18 percent of adults and 15 percent of children/teens did not report eating any WG foods at all. A second paper by the same team of scien-tists also showed that adults with the lowest WG intakes had significantly higher levels of C-reactive protein (a marker of inflammation). Consumers eating WGs also had nutrient in-takes that were more closely in line with dietary reference values for fibre, magnesium and iron and lower intakes of sodium, indicating that higher WG intakes may also be associated with improved diet quality. These are important findings, highlighting the need to continue encouraging WG consump-tion, especially amongst teenagers and young adults. Improved reporting in studies will also enable high quality meta-analysis papers to be complied in the future. For more information see: Ross AB et al. (2015) American Journal of Clinical Nutrition Vol 101 no 5, pg 903-907; Mann KD et al (2015) Brit-ish Journal of Nutrition Vol 113, Issue 10 pg 1643-1651 and Mann KD et al (2015) British Journal of Nutrition Vol 113 Issue 10, pg 1595-1602.

lateSt oN WHolegraiNS

Bda to Support a NeW aWard iN memory of pat Judd aNd Her Work In memory of Pat and her work, her family and friends have set up a BDA award with the aim to raise enough money to cover the support of a PhD for a dietitian. The details have not yet been finalised, but those wishing to contribute to the award are in-vited to do so. Please send a cheque made out to the BDA Gen-eral and Educational Trust, addressed to Pat Judd Memorial Award, c/o Andy Burman, Secretary to the Trustees, The British Dietetic Association, 5th Floor, Charles House, Queen-sway, Birming-ham, B3 3HT.’

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In 1946, the Medical Research Council suggested that funding was given to Robert McCance and Elsie Widdow-son to examine how war and extreme food shortages had affected the Ger-man civilian population. They toured many cities and found that the hospi-tal in Wuppertal had the best labora-tory facilities, but especially of inter-est, was the presence of a completely bilingual English-German doctor who was anxious to support their research. What had started as a six-month proj-ect stretched into three years of data collection. One of the projects that Elsie led, was an examination of the effects of different kinds of bread on growth. This was specifically to support deci-sions on post-war bread specifications, for although the war time national loaf made from high extraction flour was healthy, it was unpopular. In January 1947, Elsie found a suitable orphan-age in Duisburg for the bread feeding experiments. The children were all un-derweight and under height and for 18 months they were fed five different diets where 75 percent of energy was provided by bread. The breads were made from one of five types of flour: 100 percent (wholemeal), 85 percent and 72 percent extraction (white) and two white flours enriched with B vita-mins and iron by a smaller or greater amount. In addition, all flours were for-

tified with calcium carbonate. Conclu-sions were that all of the breads were equal in relation to supporting growth in the children. Elsie announced her results at the annual conference of the British Medical Association and, in a time before PowerPoint, presented five of the girls, one from each of the different bread groups, and challenged the learned audience to detect any dif-ferences (there were none). Perhaps not the most scientific way to docu-ment the effects on growth of different diets, but a very exciting adventure for some young German orphans and a very interesting visual aid for the learned medics. Another project that Elsie led was an examination of the effects of pro-viding additional bread to the meagre baseline diets of young children. In 1948, Elsie recruited two small munic-ipal orphanages which each housed about 50 children between the ages of four and 14 (the average age was just under nine). The children were all short and thin and would be weighed every fortnight for a year. For the first half year, all children would be on the normal official rations and for the sec-ond half year, children at one of the orphanages would be given unlimited amounts of additional bread to fully satisfy their appetites, along with some extra margarine/jam and con-centrated orange juice.

the imPortAnCe of tender loving CAre: elSie WiddoWSon’S reSeArCh in germAnydr elsie Widdowson (1906-2000) was an extraordinary pioneer dietitian and the fact that the Bda annual lecture bears her name is just one of the many ways that her achievements continue to be recognised. a tribute to her and professor robert mccance was edited by one of the authors (ma) and published by the British Nutrition foundation in 1993. their joint professional timeline spanned 60 years, but some of their most fascinating research adventures occurred during their time in bleak, post-war germany.

profeSSionaL profiLe

dr margaret ashwell, obe, phd, fafn, rnutr (public Health), research fellow

ursula arens Writer; nutrition & dietetics

Ursula has spent most of her career in industry as a company nutrition-ist for a food retailer and a pharmaceuti-cal company. She was also a nutrition scientist at the british Nutrition Foundation for seven years. Ursula helps guide the NHD features agenda as well as contributing fea-tures and reviews

Dr Margaret ashwell has been a Senior research Scientist with the Medical research council, Science Director of the bNF and an Independent consultant, working for government and industry. She is an author and editor of the biography of the nutrition pioneers, Mccance and Widdowson. She was appointed an Obe in 1995 and was elected as a Fellow of the ass-ociation for Nutrition (afN) in 2012.


The results observed in the first six months were peculiar. Although all the children ap-peared to consume the same diet, changes in weight and height were different. At one of the homes, children gained exactly the predicted average amount of 1.4kg weight. In contrast, children in the other home gained on average less than 0.5kg. The results in the next six months were even more peculiar. In complete contradic-tion to prediction, weights and heights of the children kept on standard meagre rations in-creased significantly. Children given the extra bread rations grew at only modest levels and, astonishingly, after the six month period, their average weights and heights were below those of the children in the orphanage not receiving supplementary foods. The observations were completely bizarre because weights had been so systematically collected, the food intakes so carefully measured and observed. The results

seemed absurd and Elsie was mystified. Elsie was busy, but always had time to care for the little things that needed thought and attention. Lois Thrussell was a research nurse tasked with doing all the measurements for the energy and mineral balance studies. But Lois was unhappy about the fact that she had been commanded out of a room in the orphanage; she had to do her research in a hen house. The issue of concern was that the hen house had whitewash on the walls, but it was prone to flake off and ruin the calcium balance mea-surements. Elsie was the Miss Fix-it, and found an expensive piece of cretonne to drape over the walls. But Lois was still full of tears and told Elsie of her anxieties over the way that the orphans were treated by the very harsh and vindictive housemother. Mealtimes were dreaded by the children, because this was the time in their day for public scorn and rebuke over trivial misdemeanours.




Elsie went to investigate and was able to con-firm the constant fear of the children over public and victimizing reprimand by the housemother at mealtimes. Food would be cold and children would be in tears. Further examination led El-sie to find out the amazing coincidence that the ‘dragon-lady’ had transferred from one of the orphanages to the other (the one being given the additional bread) at exactly the six-month changeover period of the project. During the dragon-lady’s reign at the first orphanage, the children gained nearly one kilo less than at the second orphanage, despite identical food ra-tions. During her reign at the second orphanage, growth in the children decelerated to the point that weights were below those of children not receiving the additional bread and juice. Elsie further discovered that the dragon-lady had a few particular favourites; children who could do no wrong in her eyes were always given praise. When she transferred between orphanages, she was able to transfer eight of these children with her; in the year of the project, the favourite chil-dren gained on average four kilos: one kilo more than any of the other children. Elsie concluded from her study that psy-chological stresses due to harsh and unsympa-thetic handling could seriously curtail growth

rates, maybe through influences on digestion. Of course, it would be impossible to repeat or confirm the research. But in poetic form, she in-cluded in her 1951 Lancet paper, the biblical ref-erence from Proverbs that, ‘Better is a dinner of herbs where love is, than a stalled (fattened) ox and hatred therewith’. More than 20 years ago, one of the authors (MA) was able to get Elsie to pull together her thoughts on research into a very short list of golden nuggets of advice, and many of the items reflect outcomes from her projects in Germany. This guidance, resulting from 60 years of re-search into nutrition science, is still valuable to dietitians and other researchers today and is the essential share-it item.

advice to a young scientist - by elsie Widdowson• Treasureyourexception-Yourextremeresults

may be the most interesting part of your study.

• Varyyourconditions-Sometimeschangingtwo variables give you results that changing single variables will not detect.

• Donotbeafraidofowninguptoamistake,even if your results have already been published - it is better that you publish a correction than giving someone else the pleasure.

• Ifyou’reusingananimalasamodelforhumanadults or children, be careful to choose an appropriate species of the right age for your experiments - Some observations are age or species specific.

• Ifyourresultsdon’tmakephysiologicalsense,think! your may have made a mistake or your may have made a discovery - Check everything, but then think of alternative explanations - sometimes they are the new discovery. as shown above in the german orphanage study, tender loving care of children may make all the difference to growth and health.



Information sources• Ashwell M (ed) McCance & Widdowson; a scientific partnership of

60 years. british Nutrition Foundation, 1993• Buklijas T. Food, growth and time: Elsie Widdowsons’s and Robert

McCance’s research into prenatal and early postnatal growth. Studies in History and Philosophy of biological and biomedical Sciences (2013)

• Widdowson EM (1951) Special Articles: Mental Contentment and Physical Growth. Lancet, 1951, i: 1316-1318



Breast milk is suitable for the major-ity of infants suffering from CMPA, and mothers normally do not need dietary restrictions unless their infant presents symptoms whilst being breastfed (2). However, when breast milk is not avail-able, advice on a suitable milk alterna-tive is needed. Cows’ milk allergy specialist formu-lae spend has been increasing signifi-cantly in the past years (3). It has been re-ported that the NHS spends £23.6 million per year on paediatric cows’ milk protein allergy management (4). It is estimated that the NHS cost of managing an infant suffering from CMPA with extensively hydrolysed formula (EHF) over a period of one year would be £1,853 and with amino acid formula (AAF) this would be

£3,161 (5). Considering the NHS current financial situation, inappropriate spend-ing has to be avoided (6). Adding to future savings, the NHS aims to improve the quality of patients’ care (6), and it is known that appropri-ate prescribing can improve patient out-comes and safety (7). Therefore, it is es-sential to ensure that cows’ milk allergy specialist formulae are correctly and timely prescribed and reviewed.

reaSonS tHe Spend on CoWS’ miLk aLLergy formuLae iS riSingCows’ milk allergy specialist formulae expenditure is progressively increasing in London over the years and is signifi-cantly higher compared with other spe-cialist paediatric nutritional products.

CoWS’ milk Allergy SPeCiAliSt formulAe: APProPriAte PreSCribing. WhAt do We need to knoW?

Juliana Scapinpaediatric dietitian, Central London Community Healthcare nHS trust

Juliana is a registered dietitian for over 10 years and has experience mainly in paediatric dietetics in brazil and in the uk. her interests are in food allergies, nutrition products and appropriate prescribing.

food allergy is a recognised healthcare problem, with cows’ milk protein being the most common food causing allergy symptoms in infants and young children (1). it is established that the management of cows’ milk protein allergy (cmpa) following the diagnosis is complete or individualised avoidance of cows’ milk protein alongside the usage of suitable substitute milks.

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The following factors are believed to have been contributing to this (7):• increasing research in allergy, which leads to

increased awareness of CMPA;• rising cost of products;• AAF being used inappropriately as first line,

by some;• inappropriate initiation and/or prolonged

usage of products caused by:- disparity in HCP knowledge about CMPA

management and products;- poor communication to GPs, e.g. incom-

plete correspondence from HCPs recom-mending cow’s milk allergy specialist formulae in regards indicators for chang-ing/stopping/reducing formula; + vol-ume of prescriptions (number of tins per month);

- GPs not acting as correspondence’s ad-vice from specialists;

- patients not reviewed by a paediatric

dietitian as inequality in paediatric dietetic service provision.

CHooSing an appropriate CoWS’ miLk protein aLternative miLkThe NICE guideline (8) recommends that a HCP with the appropriate competencies takes an allergy-focus clinical history in or-der to find/exclude a food allergy diagnose, which may lead to a formula initiation. This guideline also advises that a dietitian should be involved in the care of children suffering from food allergies and, therefore, in monitoring/advising the type, quantity and length of cows’ milk allergy specialist formula usage in combination with breast milk or as a replacement when breast milk is not available, as well as an appropriate diet. The following cows’ milk allergy specialist formulae options are currently available in the UK (9):


paediatriC food aLLergy

eHf manufacturerSuitable

ages

average cost per

unit

cost per 100kcal

protein source (2)lactose content

Similac alimentum (400g)

abbottfrom birth

£9.10 £0.43Hydrolysed casein

95% peptides <1,000 daLactose

free

Nutramigen lipil 1 (400g)

mead Johnson

birth to 6 months



freeNutramigen lipil 2 (400g)

mead Johnson

from 6 months

£10.87 £0.58

althera (450g) Smafrom

birth to 3years

lactose

aptamil pepti 1 (400g/800g)

milupabirth to 6 months

£9.54/ £19.08

£0.49Hydrolysed whey

73% peptides <1,000 daContain lactoseaptamil pepti 2

(400g/800g)milupa

from 6 months

£9.10/ £18.20

£0.47/ £0.43

cow & gate pepti-Junior (450g)

Cow & gatefrom birth

£12.58 £0.56Hydrolysed whey

57% peptides <1,000 da

Contains residual lactose

pregestimil lipil (400g)

mead Johnson

from birth



free

infatrini peptisorb (200ml) – High energy formula

nutricia

from birth to 18 months or 9.0kg weight

£3.41 £1.71Hydrolysed whey

73% peptides <1,000 da

Contains residual lactose

table 1: eHf options available in the uk

Hydrolysed whey £10.68 £0.47

Contains 99.3% peptides<1,000 da


Extensively Hydrolysed formulae (EHF)About 90 percent of children suffering from IgE mediated CMPA (10) and 70 percent presenting non-IgE mediated CMPA (11) will achieve symptoms resolution with an EHF. Although the majority of infants will tolerate all EHF types, it is important to note that some with more severe presentations of CMPA may not and therefore need an AAF. Also the presence of lactose will improve the palatability of the EHF (2).

Amino Acid formulae (AAF)Option for severe CMPA allergic symptoms when exclusively breastfed, severe forms of non-IgE-mediated CMPA (e.g. eosinophilic eosophagitis), CMPA combined with faltering growth, reacting to EHF (2). Choosing an AAF when not indicated increases the cost burden on managing CMPA and may affect development of tolerance (albeit the data is very preliminary at this time) (13).



aaf manufacturerSuitable

agesaverage cost

per unitcost per 100kcal

protein source (2)

alfamino (400g) Sma from birth £23.00 £1.14

amino acids

Nutramigen puramino (400g)

mead Johnson from birth £26.80 £1.34

Neocate lcp (400g) nutricia from birth £28.30 £1.46

Neocate active (15x63g sachet) nutricia from 1 year £66.60 £1.48

Neocate advance(15x50g & 10x100g sachet)

nutricia from 1 year£46.35/15x50g£58.60/10x100g

£1.55£1.47

Neocate Spoon (15x 37g sachet)

nutriciafrom 6 months

£39.30 £1.45

table 2: aaf options available in the uk

Sf manufacturerSuitable

agesaverage cost

per unitcost per 100kcal

protein source (2)

Wysoy (430g/860g) Smafrom 6 months

£5.65£11.00

£0.26£0.25

Whole soya

table 3: Sf options available in the uk

Neocate Active/Advance are high energy formulae and should NOT automatically replace Neocate LCP.Neocate Spoon is a weaning food that may be used in some cases of multiple food allergies combined with faltering growth under a paediatric dietitian’s close supervision.

Soya formulae (SF)Not suitable for infants <6 months of age due to phytoestrogens and should be used with caution in CMPA as risk of combined soya allergy (2). Can be purchased by patients over the counter.

Please note: Infasoy (Cow & Gate) has been discontinued since April 2015.

Lactose free and Anti-Reflux formulaeNot suitable to be used in CMPA as they contain the whole cows’ milk protein. Can be purchased by patients over the counter..

Partially hydrolysed formulaeNot suitable for CMPA treatment (2).

Over the counter milk alternativessuch as soya, oats, coconut or other milk alternative enriched with calcium. May be used for children over one year of age reviewed closely by a paediatric dietitian if dietary intake and growth are adequate. Please note that rice milk is not suitable for children under 4.5 years of age due to its arsenic content (2).


Based on a real-life UK case study1 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. Reference

(Similac Alimentum Case Studies).

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SuggeStionS to improve appropriate preSCribing praCtiCeUnderstand local spend data and then create initiatives to target local issues.

With local acute and community agreement produce local guidelines on infant formula prescribing aiming to educate local GPs and other HCPs on the appropriate options to pre-scribe, as well as the appropriate quantities and length of usage, as well as when and where to refer for specialist review.

Increase awareness of cows’ milk allergy specialist formulae range and prices in HCPs that may be initiating a prescription; updates can be accessed on the London Procurement Partnership (LPP) website (www.lpp.nhs.uk).

Improve your own prescribing practice:• Ensure best practice based on CMPA current

guidelines to prevent CMPA misdiagnosis and, therefore, inappropriate usage of the specialist formulae, e.g. encourage regular formula rein-troduction after period of cows’ milk protein exclusion to confirm diagnosis of CMPA (8).

• Review prescriptions needs - review patients regularly advising on the most appropriate op-tions. Consider over-the-counter milk alterna-tives enriched with calcium for patients over one year of age when under the close guid-ance of a dietitian as deficit in energy, protein, riboflavin, vitamin A and D and fatty acids are likely without adequate dietary sources (2).

• Good communication - ensure correspon-dences to GPs are complete and clear in re-gards the formula prescription request to prevent unnecessary prolonged/excessive usage. Inform GPs that soya formula can be purchased by patients.

• Be aware of the MAP and BSACI guidelines providing clear information on the diagnosis and management of CMPA.

CoWS’ miLk aLLergy SpeCiaLiSt formuLae appropriate preSCribing in a nutSHeLLThe cost of cows’ milk allergy specialist formulae to the NHS is progressively increasing, and con-sidering the NHS current financial situation, ap-propriate prescribing of these is paramount. Ad-vising the right product for the right patient for



ageapproximate number of tins per 28 days

400g tin 450g tin 800g tin

less than 6 months 10-13 9-12 5-7

6-12 months 7-10 6-9 3-5

greater than 12 months 7 7 3-4

table 4: Suggested formulae quantities to be prescribed

Restricting initial prescriptions for new patients to 1-2 tins will reduce wastage should the baby refuse to take the feed. Alternatively consider referral to a paediatric dietitian for assessment prior to prescribing or setting a repeat prescription

cows’ milk allergy specialist formula prescription template request

product name

manufacturer

unit size

dose per day

Quantity per 28 days (no. of tins/bottles)

goal of nutrition prescription

prescription review plan this patient will be reviewed in << >> months by the Community dietetic team.

table 5

Ensure GPs are informed when the prescriptions should be changed/reduced/stopped, as well as when the prescriptions should be reviewed by them, in case patients are discharged on prescriptions from your caseload.

www.lpp.nhs.uk).




references1 Koletzko S, Niggemann B, Arato A, Dias JA, Heuschkel R, Husby S et al. Diagnostic approach and management of cows’ milk protein allergy in infants and children:

Pediatr Allergy Immunol 2012; 23(3): 240-96 Department of Health. Quality Innovation Productivity and Prevention (QIPP) in england. London, UK, 2012 www.rcn.org.uk/__data/assets/pdf_

file/0007/457900/13.12_QIPP_in_england.pdf7 London Procurement Partnership. Paediatric appropriate prescribing for dietitians (online). www.lpp.nhs.uk/media/52668/Paediatric-appropriate-Prescribing-for-

Dietitians-compatibility-Mode-.pdf [accessed on 29th May 2015]8 National Institute for Health and Clinical Excellence. Food allergy in children and young people: Diagnosis and assessment of food allergy in children and young

people in primary care and community settings. London, UK, 20119 Paediatric Formulary Committee. BNF for Children (online). London: BMJ Group, Pharmaceutical Press, and RCPCH Publications www.medicinescomplete.com

[accessed on 29th May 2015]10 Fiocchi A, Schunemann HJ, Brozek J et al. Diagnosis and rationale for action against cows’ milk allergy (DRACMA): a summary report. J Allergy Clin Immunol 2010;

126: 11 19-2811 Latcham et al. A consistent pattern of minor immunodeficiency and subtle enteropathy in children with multiple food allergy. J Pediatr 2003; 143: 39-4712 Paediatric Formulary Committee. BNF for Children (online) London: BMJ Group, Pharmaceutical Press, and RCPCH Publications http://www.medicinescomplete.

com [accessed on 29th May 2015]13 Venter et al. Diagnosis and management of non-IgE-mediated cows’ milk allergy in infancy - a UK primary care practical guide. Clinical and Translational Allergy 2013

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the right length of time will not only save money, but can enhance patients’ clinical outcomes and safety. Dietitians having the expertise in this area

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ESPGHAN GI Committee practical guidelines. J Pediatr Gastroenterol Nutr 2012, 55(2): 221-2292 Luyt et al. BSACI guideline for the diagnosis and management of cows’ milk allergy. Clinical & Experimental Allergy 2014; 44, 642-6723 London Procurement Partnership. report into paediatric nutritional products prescribing practices (online). www.lpp.nhs.uk/media/18287/Paediatric-Nutritional-

Products-Prescribing-Practices-in-London.pdf [accessed on 29th May 2015]4 Venter C. Cows’ milk protein allergy and other food hypersensitivities in infants. Journal of Family Health Care 2009; 19(4): 128-1345 Taylor et al. Cost-effectiveness of using an extensively hydrolysed formula compared to an amino acid formula as first-line treatment for cows’ milk allergy in the UK.

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HiStory of maternaL pkuIn 1980, Lenke and Levy (3) published an international survey that included data on 524 pregnancies in 155 women with PKU. They reported that in wom-en with PKU untreated during their pregnancy, 92 percent of the babies had mental retardation, 73 percent had mi-crocephaly, 12 percent had congenital heart disease and 40 percent had low birth weights (3). The Lenke and Levy survey (3) paved the way for a prospective study of the treatment and its benefits, called the International Maternal PKU Col-laborative Study (4). This study of 574 pregnancies in 382 women with PKU, demonstrated that intervention with a phenylalanine-restricted diet reduces

microcephaly, intrauterine growth re-tardation, congenital heart disease and mental retardation in the offspring of PKU mothers (4). These results are illustrated in the original graph below from the Koch et al paper (4). McCarthy general cogni-tive index (MGCI) scores are shown for offspring at four years of age, grouped by weeks of gestation after which ma-ternal blood Phe was consistently below 600μmol/L. Graph 1 illustrates the relationship between the timing of dietary interven-tion and the outcome of the offspring. The earlier the Phe-restricted diet is started, the better the outcome for the child. The ideal situation is to start the diet before conception, as children

mAternAl Pku

paula Hallamdietitian advisor nSpku

Paula is the dietitian Advisor for the nSPku (www.nspku.org), working with families, adults with Pku and healthcare professionals who care for people with Pku to improve care and treatment for all. Paula also works as a Clinical dietitian in the metabolic team at great ormond Street hospital, london

phenylketonuria (pku) was first discovered in 1934 by a Norwegian biochemist and medical doctor called dr asbørg følling (1). in 1957, prof charles dent reported three children (without pku) of mothers with pku, all of whom had significant brain damage (2), but it was not until much later that the ‘maternal pku syndrome’ was properly recognised, described and treated with a low phenylalanine diet for the mother with pku in order to protect her developing foetus from the teratogenic effects of raised blood phenylalanine levels.

pku

Sarah ripleyadult metabolic dietitian, Salford royal nHS foundation trust

Sarah began working at Salford royal in 2009 and was solely responsible for establishing a dietetic service for adult metabolic patients. Sarah has over 20 years’ clinical experience and has worked at both paediatric and adult hospitals in a variety of specialist areas.

graph 1


http://www.nspku.org/

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pku

have the best outcome (MGCI = 99 at four years of age). Children of mothers with mild hyperphe-nylalaninaemia (MHPA) also have a similar out-come as Phe levels are controlled even without treatment. The offspring of women who started the Phe-restricted diet the latest (>20 weeks ges-tation) had the worst outcome with a MGCI of 70 at four years of age. From this study, the US researchers recom-mended blood phenylalanine levels during preg-nancy of 120-360μmol/L. In the UK, we tend to be slightly more conservative and use phenylala-nine levels of 100-250μmol/L during pregnancy, possibly up to 300μmol/L in some UK metabolic centres.

key CHaLLengeS during pregnanCyThe first challenge during the preconception period is to understand the use of 50mg pheny-lalanine (phe) exchanges (1.0g protein), which must be accurately weighed and counted each day. Where the phe content of a food is not known, 1.0g protein exchanges are used and an understanding of food labelling will be needed to enable this to be calculated. For the many women who are not following a phe- restricted

diet, this can prove difficult to understand at first as significant dietary changes will be needed and they may be unfamiliar with the concept of exchanges. All women are encouraged to bring their partner or a relative to the educa-tion sessions for support, as this will be invaluable to help manage the diet at home. The format and number of

education sessions is tailored to the in-dividual and home visits may be required

in addition to the monthly hospital visit. Cooking skills are essential when following a phe-restricted diet and this may need to be part of the education sessions. All the compa-nies who manufacture low protein foods have excellent recipe books that give ideas and tips for the use of their products. The toler-ance of the phe-free amino acid supplements, e.g. PKU Cooler, PKU Lophlex LQ, can prove problematic due to the unfamiliar taste and, in some cases, abdominal symptoms have been reported. These are essential to meet dai-ly protein, vitamin and mineral requirements and dietary restriction cannot commence un-til these are established. When phe control is sub-optimal in child-hood, it can cause mild learning difficulties and the level of support required will be significantly increased. During preconception it is essential to control body weight as rapid weight loss can cause an unwanted rise in blood phe levels, which must be corrected as soon as possible, and further weight loss prevented. This is more like-ly in women who usually follow an unrestricted diet, as the low phe diet is less energy dense than their usual diet. Including a wide variety of low protein foods in the diet will help prevent this, although in some cases further energy supple-mentation may be required.

All women are encouraged to bring their partner or a relative to the education sessions for support, as this will be invaluable to help manage the diet at home.



pku

Monitoring of blood phe levels is done by dried blood spot, which the women send from home directly to the laboratory twice weekly. These results are phoned or emailed to the pa-tient as soon as they become available and ad-vice is given if dietary changes are necessary. A minimum of four consecutive levels within the target range of 100-250µmol/l is required at Sal-ford Royal Hospital before contraception can be discontinued. These phe levels need to be main-tained throughout pregnancy for optimal out-come for mother and baby. Women need to be made aware that, although PKU does not obvi-ously affect fertility, the length of time taken to conceive varies greatly and the low phe diet may be required for many weeks or months prior to pregnancy as well as during. During the early stages of pregnancy, re-lated nausea and vomiting can be problematic and can lead to reduced intake or absorption of the amino acid supplements. Accurate report-ing of the quantity of supplement managed daily is essential and strategies, such as taking smaller more frequent amounts of supplement, often help. The Metabolic dietitian will careful-ly monitor phe levels to ensure these remain as optimal as possible. In some cases, medication can be used, or in severe cases, hospital ad-mission may be required. At the start of preg-nancy, the number of phe exchanges is usually low; in classical PKU this can be as few as two to five exchanges per day (2.0-5.0g natural pro-tein). However, after approximately 20 weeks, these tend to increase as the demand for pro-tein from the foetus increases and by the end of pregnancy some women can be on as many as 25 to 30 exchanges (25-30g natural protein). In women who usually follow a low phe diet, increasing the number of daily exchanges can prove challenging when only carbohydrate

based foods are used for phe exchanges. The use of a high protein exchange list can help, using small quantities of High Biological Val-ue protein e.g. one egg = six exchanges. The amino acid supplement intake is reviewed by the dietitian as natural protein intake increases and may be gradually reduced to maintain a steady total protein intake. The Metabolic Team will liaise with the local obstetrician who may decide that addi-tional growth scans would be beneficial. If phe control is good, these are not essential and not all maternity units carry these out. PKU does not carry any additional risks to the mother or baby during delivery. Post-partum, some women choose to remain on a phe-restricted diet, in which case the daily phe exchanges will need to be adjusted to control blood lev-els to approximately 700µmol/l. This is rec-ommended if future pregnancies are desired and current advice in the UK recommends diet for life in all PKU patients. If returning to an unrestricted diet, the nutritional adequacy of this is essential and daily protein require-ments must be met. If this is problematic, a small dose of amino acid supplement is rec-ommended by the Metabolic dietitian at Sal-ford Royal.

Case study

Nicola age 34 years old follows a relatively strict low phenylalanine diet (12 exchanges). She was initially worried about whether she could manage the diet and whether the baby would be OK. With reassurance and support from the dietitians, she commenced a preconception diet on only two exchanges. Weight loss in her first pregnancy resulted in the need to use extra

During the early stages of pregnancy, related

nausea and vomiting can be problematic and can

lead to reduced intake or absorption of the amino

acid supplements.


artificial calories, as her diet was limited. Ni-cola found recording exchanges and the PKU Coolers helped; she also noted her phe levels and any changes in exchanges. During her first pregnancy, Nicola struggled with being hun-gry, not eating enough and when to take the PKU Coolers. Good phe control was managed throughout the pregnancy and a healthy baby boy was born. During her second pregnancy, Nicola in-cluded more low protein foods in her diet and did not require any artificial calories. Any nausea was overcome by snacking and Nicola found that taking the PKU Coolers at the same time as her meals helped with controlling her phe results. Good phe control was managed throughout the pregnancy and a healthy baby girl was born on her older brother’s third birthday. “For the time you are on the diet, it does take over your life and it is a struggle, but you can do it because you want to. It’s all about planning your diet, using the low protein foods, getting family involved, be it support or making food for you just take it seriously and stick at it ...it’s all very worthwhile.”

WHat about tHe baby and pku?The baby of a mother with PKU will inherit one copy of the mother’s PKU gene, but this does not

mean that the baby will have PKU. The father of the child needs to be a carrier of the PKU gene in order to ‘pass on’ another copy of the PKU gene, as two copies are required to result in a child with PKU. There is approximately a one in 100 chance of this happening, as the carrier rate for PKU in the UK is one in 50 and there is a one in two chance of the baby inheriting the father’s copy of the PKU gene. In summary, approximately one percent of babies born to PKU mothers have PKU themselves. When the baby is born, he/she will be screened for PKU in the same way that all newborn babies in the UK are screened, with the heel prick test taken on day five to eight of life. The heel prick test is not only to detect PKU but other inherited conditions too.

ConCLuSionManaging a PKU pregnancy is both challeng-ing and rewarding for the Metabolic team and the patient involved. It requires focused education and intense support from the Meta-bolic dietitian as well as motivation and de-termination from the woman with PKU and her family. With the right support in place, both mother and baby can achieve a healthy outcome.


pku

references

1 Følling a. Uber ausscheidung von Phenylbrenztraubensaure in den Harn als Stoffwechselanomalie in Verbindung mit Imbezilitat. Hoppe Seylers Z Physiol Chem. 1934; 227: 169-76

2 Dent CE. Discussion of Armstrong MD. The relation of biochemical abnormality to the development of mental defect in phenylketonuria. In: Etiological Factors in Mental Retardation: Report of Twenty-Third Ross Pediatric Research Conference. Columbus. OH: Ross Laboratories; 1957: 32-33

3 Lenke RR and Levy HL. Maternal phenylketonuria and hyperphenylalaninaemia: An international survey of the outcome of untreated and treated pregnancies. The New England Journal of Medicine. 1980; 303 (21): 1202-8

Managing a PKU pregnancy is both challenging and rewarding for the Metabolic team and the patient involved. It requires focused education and intense support from the Metabolic dietitian . . .

4 Richard Koch et al. The international collaborative study of maternal phenylketonuria: status report 1998. Eur J Pediatr 2000. 159 [Suppl 2]: S156±S160


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It evolved from the knowledge that extended fasting readily led to a sig-nificant seizure improvement and that this effect could be replicated by alter-ing the macronutrient profile of the diet, triggering a metabolic shift away from carbohydrate to fat as the predominant dietary energy source. It was not until 2008 that the first randomised controlled trial (RCT) of KDs in children was published by a pio-neering team from Great Ormond Street Hospital, proving efficacy equivalent to modern anticonvulsant drugs and en-dorsing the use by specialist paediatric teams across the world (1). The first and largest ever study of KDs in adults (n=81) was published in America in 1930 (2), but despite positive results (over half achieved a 50 percent or greater reduction in sei-zures) and further small trials over the decades, they continue to be rarely used within the adult epilepsy world. A recent meta-analysis of 12 relevant adult trials (270 adults) reported ef-ficacy in 42 percent of cases, suggest-ing parity with paediatric trials (3). Almost half of these studies used a modified Atkins diet (MAD); a more liberal approach first used in children in 2003 (4), making treatment a more practical possibility for adults and children alike. A UK adult trial is in the early planning stages and results from a Norwegian RCT started in 2011 are eagerly awaited (5).

figure 1: ketone production by liver during fasting conditions (ketosis)

HoW doeS a ketogeniC diet Work?(See Figure 1). Carbohydrate reduc-tion, the cornerstone of ketogenic diets, reduces glucose availability and the stimulus for insulin secretion. This trig-gers an increase in the rate of fatty acid oxidation in the liver and the release of

ketogeniC therAPy for AdultS With drug reSiStAnt ePilePSy: time it WAS on the menu for AdultS

Susan WoodSpecialist dietitian, ketogenic therapies matthew’s friends Clinics and Charity

Susan works full time for matthew’s friends Clinics and Charity as a Specialist ketogenic dietitian, treating children and adults with drug resistant epilepsy and adults with brain tumours.

despite the best efforts of modern anticonvulsant medicines and the availability of novel approaches, such as vagal nerve stimulation and epilepsy surgery, around 30 percent of children and adults are refractory to treatment, enduring a life of poor seizure control and impaired quality of life. the ketogenic diet (kd) has been used as a treatment for epilepsy since the 1920s, pre-dating most anticonvulsant drugs.

ketogeniC diet

Credit: The Regents of the University of California


ketones into the circulation. Brain tissue rapidly adapts to this altered state, using ketones as the primary fuel to drive energy metabolism. The ex-act mechanisms by which a ketogenic diet exerts its anticonvulsant effect are likely varied and as yet unconfirmed, but it is thought that it enhanc-es brain energy reserves, stabilising neuronal tissue and influences the balance of neurotrans-mitters and a range of compounds involved in exciting and inhibiting electrical activity within brain tissue (6).

WHat CHangeS Can it deLiver?Ketogenic therapy can deliver a significant re-duction in seizure frequency, intensity and re-duce the time needed to recover from seizures. Adult responders often report more subjective changes, such as being able to think more clearly, concentrate better, have more energy and feel generally brighter in mood (7). Overweight indi-viduals successfully lose weight, reporting posi-tive changes in body shape; particularly waist circumference. These changes readily occur within the first three months of KD treatment, despite there being no change in the anticonvul-sant doses. Considering that those referred into ketogenic therapy may have failed for decades to gain adequate seizure symptom control from all available medications, you may appreciate how exciting it is to the patient, the carers and the ketogenic team, when it delivers a life-changing response.

tHe diet preSCriptionAll ketogenic regimes are designed around the nutritional requirements of the individual and are low in carbohydrate, high in fat and pro-vide adequate protein. Traditional ketogenic ap-proaches require weighing of all food items so that ratios (the Classical KD) or percentages (the Medium Chain Triglyceride KD) of fat protein and carbohydrate are maintained consistently in all meals and snacks. However, for the majority of UK adults, we use a more liberal modified ke-togenic approach based on the Modified Atkins Diet (MAD) devised by the team at Johns Hop-kins Hospital (8). The basic essentials of a Modified Ketogenic Diet used at Matthew’s Friends Clinics are as fol-lows:


ketogeniC diet

What does a ketogenic meal look like?three meals providing 6gCHo & 60g fat:

1 Coconut & raspberry porridge

2 Watercress soup, Sukrin bread and cheese.

3 pan fried salmon, kale and mushrooms plus raspberries and double cream


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• Carbohydrate is restricted to 5.0-10g per meal and 2.0-3.0g in snacks (a total of 20-30g per day) and is always accompanied by fat. A 1.0g carbohydrate exchange system is used and foods are weighed on gram scales. Typi-cal carbohydrate sources are non-starchy vegetables, fruits (mainly berries), nuts, seeds and double cream.

• Fat must always be consumed alongside

any carbohydrate containing food. Portion guidance is based on a 10g exchange system and designed to meet individual calorie requirements. For example a 2,000kcal re-gime will likely require a minimum of 170g fat. Typical fat sources are olive oil, butter, double cream and mayonnaise, with sup-plementary amounts provided from dietary protein sources.


ketogeniC diet

criteria for ketogenic therapy in adults

the adult will have failed to respond to at least two anticonvulsant medications and be keen to explore the kd.

medical contraindications (biochemical screening is essential):

• Fattyacidoxidationdefects,organicacidurias,pyruvatecarboxylasedeficiency,anydisordersrequiring a high carbohydrate treatment.

• Ahistoryoffamilialhyperlipidaemia,renalstonesoreatingdisorders.• Pregnancyorplanningpregnancy.• ProceedwithcautionandoptimisemanagementbeforeinitiatingKDtherapy:dysphagia,gastro-

oesophageal reflux, chronic constipation or diabetes.

Summary of treatment stages

pre-kd diet assessment appointment; neurologist and dietitian

• Reviewofepilepsyhistory,medicalmanagementandallrelevanttestsincludingbiochemicalscreening.

• Discussionofthepracticalissues(thefood,importanceofmonitoring),possiblenegativesideeffects(mainly lethargy during initial week of transition and constipation. increased risk of renal stones and osteoporosis long term) and possible outcomes.

• Timingofthetreatmenttoenablecommitmenttothreemonthswithnoplannedinterruptions.

kd treatment education session; dietitian and ketogenic diet assistant

• KDprescriptionbasedonBMI,activitylevels,estimatedenergyrequirementsandwhetherweightmaintenance or loss are desired.

• GuidanceonsourcesofproteinCHOandfat.• Practicalmenuguidancebasedonfoodpreferencesandlifestyle.• Guidanceonmonitoring:bloodketone(1.0-5.0mmol/l)andglucosetestingorurineketonetestingas

appropriate, seizure, symptom and weight monitoring.• Guidanceonvitaminandmineralsupplementation;inmostcases,aone-a-dayadultmultivitaminand

mineral, plus additional calcium and vitamin d.

follow up; dietitian and ketogenic diet assistant

• Regularcontactbyphone/email;generallyonceortwiceaweekuntilalevelofstabilityisreached.• Adjustdietprescriptionasrequired,basedonseizuresymptoms,weightandbloodorurineketones.

three-month follow up; neurologist and dietitian

• Repeatbloodbiochemistry.• Ifnochangeinseizurepatternoranyrelatedparameters(energylevels,alertness,clarityofmind,

seizure recovery time etc), consider weaning back towards mainstream low gL diet.• Ifprovingbeneficial,continuetreatmentandreviewinafurtherthreemonthsandthereaftersix

monthly.

at two years, discuss the possibility of weaning back towards a more mainstream low gL diet regime. However, if it is working well for them, adults are reluctant to make significant changes.

figure 2: treatment criteria and treatment stages


• Protein is consumed with each meal and in normal portions (a therapeutic ketogenic diet is not a high protein diet). Typical pro-tein sources are eggs, poultry, red meat, fish, cheese, nuts and seeds.

Enteral feeds are normally based on the Clas-sical KD, with ketogenic ratios for adults (perhaps 2:1 to 3:1) generally lower than those used in chil-dren, due to larger protein requirements. As there are no commercially available adult KD formu-lae, feeds tend to be based around the paediatric product Ketocal (Nutricia), available in liquid or powdered form and designed for children aged one to 10 years. It always requires adjustment with additional protein, carbohydrate, vitamins and minerals when used for adults. See Figure 2 for treatment criteria and treatment stages.

Current barrierS to aduLt treatmentAdults seeking advice from their neurology teams are readily told that ketogenic therapy is too complex, unpleasant, unhealthy and only effective in children. This is due to a lack of knowledge and experience in the practicalities of modern day ketogenic therapy within the adult neurology and dietetic sector and the lack of RCT evidence to enable NHS service develop-ments for adults. The high fat intake required by KDs raises concerns in uninitiated healthcare profession-als and patients alike. All treatment proto-cols involve elements of energy prescription to deliver precise control of body weight and the full lipid profile is measured at baseline, then three to six monthly onwards as part of the biochemical monitoring. The KD prescrip-tion is adjusted as often as required to opti-mise outcomes and, where necessary, steps can be taken to influence lipid fractions by alter-ing dietary fat sources. A study in adults on a MAD KD for three months or longer, reported that the increased levels of total cholesterol

and LDL found in the first three months, nor-malised within 12 months. No cardiovascular or cerebrovascular in-cidents were reported in 12 adults followed for three or more years (9). Over recent years, there has been increasing interest in the po-tential value of low carbohydrate regimes in the management of obesity, Type 2 diabetes and metabolic syndrome, in terms of weight loss, increased serum high density lipoprotein cholesterol, increased low density lipoprotein particle size, reduced serum triglyceride levels and improved sensitivity to insulin (10, 11). It is possible that the flatter glucose/insulin pro-files and the metabolic shift from fat storage towards fat oxidation induced by the KD may convey additional metabolic benefits to some adults with refractory epilepsy. In 30 years of clinical practice, I haven’t en-countered a more powerful and life transforming dietary treatment than ketogenic therapy. Frus-tratingly, we are still unclear about the mecha-nisms of action and have no way of predicting who will respond and who will not. With the current limitations on the provision of ketogenic services, this knowledge would be immensely helpful. However, the potential of ketogenic di-ets to bring hope and a sense of control to indi-viduals who have neither, is a powerful driver to those patients and clinical specialists in pur-suit of increased availability of this century-old therapy that modern medicine cannot yet find a way to replace. In the UK, ketogenic therapy for adults with epilepsy is provided through Matthew’s Friends Clinics (www.mfclinics.com), the adult metabol-ic team at the National Hospital for Neurology & Neurosurgery in London and a neuropsychiatry team at The Barberry in Birmingham, with some single case provision in other centres. For further information on ketogenic therapy including adult protocols, please see reference 12.


ketogeniC diet

Adults seeking advice from their neurology teams are readily told that ketogenic therapy is too complex, unpleasant, unhealthy and only effective in children.

www.mfclinics.com),



ketogeniC diet

Case study:

andy, aged 50, has seizures as a result of a brain tumour.He has been using a modified KD for three and a half years. “I have tried a variety of different anticonvulsant drugs with varying degrees of success and failure. Some of the drugs have me made me short tempered; some of them have made me fixate on small, insignificant issues, others have just not controlled the seizures enough and I have wound up back in hospital. And all of them give me fatigue and I find this the hardest to deal with.

“Within a few weeks of starting the ketogenic diet, the intensity and frequency of my seizures decreased and, with the guidance of my neurologist, I was able to gradually taper my Clobazam dose and withdraw it completely eight months after commencing keto-genic therapy. This has resulted in a significant im-provement in my concentration and overall energy levels with no worsening of the seizures. It has given me a huge chunk of my life back.”

See Andy’s short film at:http://site.matthewsfriends.org/index.php? page=andy-wild

References:1. Neal eG, chaffe HM, Schwartz rH, Lawson M, edwards N, Fitzsimmons G, Whitney a, cross JH. The ketogenic diet in the treatment of epilepsy in

children: a randomised, controlled trial. Lancet Neurology 2008; 7: 500-5062. Barborka CJ. Epilepsy in adults: results of treatment by ketogenic diet in one hundred cases. Arch Neurol Psychiatry 1930; 23:904–143. Fang Y, Xiao-Jai L, Wan-Lin J, Hong-Bin S, Jie L. Efficacy of and patient compliance with a ketogenic diet in adults with intractable epilepsy: A meta-

analysis. J Clin Neurol 2015; 11(1): 26-314. Kossoff EH, Krauss GL, McGrogan JR, Freeman JM. Efficacy of the Atkins Diet as therapy for intractable epilepsy. Neurology 2003; 61: 1789-17915. Modified Atkins Diet treatment for adults with drug-resistant epilepsy. Oslo University Hospital. ClinicalTrials.gov Identifier: NCT013114406. Hartman AL, Stafstrom CE. Harnessing the power of metabolism for seizure prevention: Focus on dietary treatments. Epilepsy & Behaviour 2013;

26(3): 266-2727. Schoeler NE, Wood S, Aldridge, Sander JW, Cross JH, Sisodiya SM. Ketogenic diet therapies for adults with epilepsy: Feasibility and classification of

response. Epilepsy & Behaviour 2014; 37: 77-818. Kossoff EH, Rowley H, Sinha SR, Vining EP. A prospective study of the modified Atkins diet for intractable epilepsy in adults. Epilepsia 2008; 49: 316-99. cervenka Mc, Patton K, eloyan a, Henry b, Kossoff eH. The impact of the modified atkins diet on Lipid profiles in adults with epilepsy. Nutritional

Neuroscience 2014. Information from author ahead of publication10. Paoli A, Rubini A, Volek JS, Grimaldi KA. Beyond weight loss: A review of the therapeutic uses of very low carbohydrate (ketogenic) diets. European

Journal of Clinical Nutrition 2013; 67: 789-79611. Vol bM, Kunces LJ, Freidenreich DJ, Kupchak br et al. effects of step-wise increases in dietary carbohydrate on circulating saturated fatty acids and

palmitoleic acid in adults with metabolic syndrome. PLoS ONE 2014; 9(11): e11360512. Wood S. Dietary treatment of epilepsy in adults. In: Neal EG, Editor. Dietary Treatment of Epilepsy; practical implementation of ketogenic therapy.

Oxford: Wiley-Blackwell; 2012: 189-197

“Within a few weeks of starting the ketogenic diet, the intensity and frequency of my

seizures decreased . . .”

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Sixty-seven percent of men and 57 percent of women in the UK are over-weight or obese from data that uses a Body Mass Index (BMI) of over 25kg/m2 to define overweight and a BMI over 30kg/m2 or more to define obese (1).The incidence of post liver transplant (LTX) obesity is suspected to be higher than the UK population figure. As the incidence of overweight and obesity rises in the general population, more people than before become ill with liver diseases with a BMI higher than seen in previous decades (2).Obesity also accel-erates the progression of liver cirrhosis in patients with Hepatitis C and alcohol related liver disease (ARLD) (3). Most significantly, there is a rising epidemic of patients presenting for LTX assessments with non-alcoholic fatty liver disease (NAFLD), which is consid-ered the hepatic manifestation of meta-bolic syndrome and directly linked to obesity and being overweight (4). NA-FLD is defined as the presence of >five percent deposition of triglycerides in the liver in the absence of significant alco-hol consumption. This results in a liver injury similar to the hepatic injury seen in ARLD. The stages of disease progres-sion are the same as ARLD in that they range from simple steatosis, fibrosis to non-alcoholic steatohepatitis (NASH) and finally cirrhosis (5, 6). As NAFLD is directly linked to Metabolic Syndrome (MS), being overweight and obesity, more patients with NAFLD present for LTX assessment with additional risk factors for cardiovascular disease. A recent analysis of the Scientific Registry of Transplant Recipients in the USA confirmed that NASH, as an indi-

cation for LTX, increased over seven-fold from 2001 to 2009, while no other indication for liver transplantation in-creased over the same time period (7). In the UK and western societies, with rising rates of obesity, a similar clinical picture is predicted in the coming years. NAFLD is now the third most common indication for LTX and is predicted to surpass Hepatitis C and alcohol as the leading indication for LTX in the near future due to the increase in features of metabolic syndrome (8). This is impor-tant as obesity affects outcome both at the time of transplant and in the longer term (9). The United States United Net-work for Organ Sharing (UNOS) data-base examined the outcomes of 29,000 LTX patients which showed higher early and late mortality, mostly as a re-sult of adverse cardiovascular events in overweight and obese patients (10). Some weight gain after LTX is inevi-table, as most cirrhotic patients on a wait-ing list for LTX display characteristics of protein energy malnutrition, regardless of their underlying disease or diagnosis of NASH, cirrhosis and presence of obe-sity. Muscle wasting is apparent, despite dry BMI being >25kg/m2 due the severe metabolic changes that occur in cirrhosis (11). These patients recover their nutri-tional status, but seem to achieve a high-er weight than pre-transplant, which in-creases the prevalence of overweight and obesity after LTX (12, 13). The reasons for weight gain are multi-factorial. Having undergone a transplant, patients feel better, appetite improves, taste changes resolve, abdominal disten-sion and early satiety from ascites resolve, metabolism returns to a non-catabolic

Weight gAin And obeSity After liver trAnSPlAntAtion

Susie HamlinSenior Specialist Hepatology, Liver transplant/iCu dietitian, Leeds teaching Hospitals nHS trust

Susie and Julie work in hepatology and liver transplantation, providing nutritional advice to patients with complex nutritional issues. they are joint clinical liver leads for the gastroenterology specialist group of the british dietetic Association.

obesity in post liver transplant patients is an increasing problem which is under recognised with no definite guidelines for surveillance or treatment.

Liver diSeaSe

Julie LeaperSenior Specialist Hepatology, Liver transplant/iCu dietitian, Leeds teaching Hospitals nHS trust


state, patients can relax pre-transplant dietary restriction and functional ability is improved. Di-etetic therapy in the first three months post-trans-plant aims to recover nutritional status and, dur-ing the initial three months post-transplant, this is the time corticosteroids are often prescribed which aids appetite and can promote weight gain. Rezende et al (14) examined weight changes and incidence of excessive weight up to three years post LTX. The incidence of excessive weight (BMI ≥25kg/m2) and obesity (BMI ≥30kg/m2) was measured before LTX and at year one, two and three post LTX. The results demonstrated a significant number of patients who were over-weight or obese one, two and three years after LTX and who were also overweight before having liver disease (p <0.01), but the percentage of pa-tients with excessive weight (BMI >25kg/m2) was higher within two (51.3%) and three years (56.3%) after surgery than before liver disease (49.4%). These studies support the need for weight loss strategies in patients post LTX which should be considered during the three to six months post-operative period following initial rehabilitation. As life expectancy of post LTX patients in-creases, the problems associated with excessive weight gain rise too, including greater incidence of post transplant metabolic syndrome (PTMS) and cardiovascular events post LTX (8). NAFLD and NASH can reoccur in patients post LTX and the risks of it developing are directly linked to post-transplant overweight and obesity, female sex, Type 2 diabetes or family history of Type 2 diabetes and development of PTMS (15). PTMS has an estimated prevalence of 44 to 58 percent in LTX recipients and is associated with increased cardiovascular mortality (16). Weight loss in over-weight obese patients post LTX with concurrent medical treatment of each element of PTMS has benefits both in term of cardiovascular and liver outcomes (17). Evaluation of the weight gain after LTX is necessary to identify overweight and obe-sity and propose strategies to prevent and treat as the extent and consequences of this condition are becoming increasingly well recognised. Three key interventions that have been shown to be effective in weight loss management are:1 weight loss via dietary means2 bariatric surgery3 Orlistat use

dietary interventionGuidelines produced by the American Gastroen-terological Association (2002) following a system-atic review of the evidence at that time stated that:• those who are overweight (body mass index

>25kg/m2) and have NAFLD should be con-sidered for a weight loss program;

• a target of 10 percent of baseline initial weight should be the goal of weight loss;

• weight loss should proceed at a rate of one to two lb/wk;

• exercise 30 to 60 minutes daily is recom-mended (daily exercise can help achieve weight loss and improve insulin sensitivity);

• those with a body mass index of >35kg/m2 and NAFLD can be considered for more ag-gressive weight management, including a gastric bypass.

A more recent review by NICE in 2011 (18) concluded that: ‘Weight reduction with different measures for treating NAFLD is recommended.’ Other cohort studies looking at NAFLD have observed a beneficial effect in ALT and cardio-vascular outcomes with five to 10 percent weight loss initially, then aiming for 0.5-1.0Kg/week (19). Studies have also reported beneficial results with weight loss on NASH by lowering body weight and increasing physical activity (20). Another study showed weight loss of at least three to five percent appeared to be necessary to improve ste-atosis, but greater loss of up to 10 percent may be needed to improve necroinflammation (19). A randomised control trial by Promrat et al (21) examined the effects of lifestyle intervention (LI) using diet, exercise and behaviour modifica-tion, with a goal of seven percent to 10 percent weight reduction on the clinical parameters of NASH. Patients were randomised to a lifestyle in-tervention and received an intensive weight loss program based on the Diabetes Prevention Pro-gram ‘Look AHEAD’, used in the USA for Type 2 diabetes with successful outcomes, or structured education provided by a health professional in large groups every 12 weeks (control) (22). After 48 weeks of intervention patients in the LI group lost an average of 9.3% of their weight versus 0.2% in the control group (p=0.003). Patients who achieved a weight loss goal (>7.0%) compared with those who lost less than


Liver diSeaSe


7.0% had significant improvements in steatosis (-1.36 versus -0.41 p<0.001) and Nash Activity Score (-3.45 versus -1.18 p <0.001). This study adds strong evidence that weight loss and ex-ercise improve histological liver features in pa-tients with NASH and, therefore, could be an appropriate treatment in NAFLD/NASH recur-rence in LTX patients. There appears to be a clear benefit in five to 10 percent weight loss in NAFLD and seven per-cent weight loss in NASH. Achieving this weight loss is a challenge in clinical practice. The level of intensity of treatment to reduce weight by five to 10 percent would require access to weight management services in local areas. NICE Guid-ance 53 (23) gives a framework for the provision of obesity services and there has recently been a change in commissioning for Tier 2 obesity services to local authorities. There is likely to be large discrepancies in the availability of Tier 2 and 3 services in different areas.

bariatriC Surgery poSt LtXBariatric surgery is known to improve metabolic profiles in non-transplant patients and this may be beneficial in preventing recurrence or develop-ment of NAFLD post LTX (24). There is a small number of case reports published that describe bariatric surgery post LTX. As yet, it is not clear how and when to consider bariatric surgery and the type of bariatric operation to do in this group. Procedures that induce malabsorption, such as Roux En Y bypass and duodenal switch, are likely to result in difficulties with the management of immunosuppression levels. This problem could be avoided with bariatric surgeries that restrict volume consumed, such as gastric band and sleeve gastrectomy, as this would have very little influence on the absorption of immunosuppres-sion medications. Lin et al (25) and Butte et al (26) both described case reports with sleeve gastrec-tomy post LTX. Another case report by Campsen et al (27) describes a gastric band placement at the time of LTX which reported good outcomes and weight reduction from BMI 42 kg/m2 to 34kg/m2 within six months of surgery. There is evidence that outcomes at BMI +40kg/m2 at time of transplant are poor and some LTX centres use BMI greater than 40kg/m2 as an excluding factor from liver transplantation (28).

However, it is highly likely that, as the number of patients with overweight and obesity having liver transplants for NAFLD and other conditions in-creases and the predicted post transplant weight gain occurs (29), there will be more patients pre-senting with BMI +35kg/m2 with co-morbidities or BMI =40kg/m2 post LTX who will be eligible to access Tier 4 bariatric services.

tHe roLe of orLiStatHistorically, Orlistat was not considered suitable for LTX recipients because it was thought to in-terfere with the absorption and resulting subop-timal serum levels of immunosuppression drugs Tacrolimus and Cyclosporine. With the rising in-cidence of obesity post LTX, the use of Orlistat is being reconsidered. In a meta analysis of 16 clinical trials by Ruck-er et al (30), Orlistat reduced weight by 2.9kg (95 percent confidence interval 2.5kg to 3.2kg). An-other small cohort study (N=15) by Cassiman et al (31) described the safe short-term use of Orlistat in a post-transplant group of patients on tacroli-mus. The patients were advised to take tacrolimus separately from meals, one hour before the meal,


Liver diSeaSe


or more than two hours after. Orlistat was taken half an hour before meals and target tacrolimus levels were achieved throughout the study. This study was the first to show that immu-nosuppression could remain within therapeutic levels whilst taking Orlistat. This area needs fur-ther research and development of clear guidelines on proposed Orlistat use in post LTX patients. It would be imperative that patients could access their local Tier 3 obesity services if they met the referral criteria of BMI +35kg/m2 with signifi-cant co morbidities or BMI +40kg/m2 in line with NHS England. Guidance on timing of immuno-suppression medication and frequent blood tests would be required during the treatment period.

ConCLuSionThe barriers to providing obesity-centred initia-tives in post liver transplant patients lie in the lack of recognition of prevalence and clear treatment pathways for this group of patients. There are no

local, regional or national initiatives specifically for this group of patients despite the long-term increased cardiovascular risk and clear benefit of weight loss programs which can achieve five to 10 percent weight loss. The development of treat-ment pathways to identify obese and overweight patients and develop referral criteria within the first six months post operatively to signpost pa-tients to appropriate Tier 1-4 obesity services in their local areas, is underway .Leeds Teaching Hospitals NHS Trust liver unit covers a popula-tion of approximately seven million which cross-es several local authorities providing Tier 1 and 2 services and clinical commissioning groups that provide Tier 3 and 4 services. The inequality will lie in what services are offered in different areas as weight loss programs cannot be supported by regional liver units.

for article references please email [email protected]


Liver diSeaSe

. . . Your essential resource

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The main bariatric surgical procedures are the gastric band, gastric bypass and sleeve gastrectomy (Figures 1-4). The duodenal switch is performed less frequently. All procedures affect the dietary intake and the gastric bypass, sleeve gastrectomy and duodenal switch affect absorption to varying degrees. For patients with severe and complex obesi-ty, bariatric surgery is an additional tool which will aid weight loss and result in metabolic improvements. The National and Bariatric Surgery Registry (NBSR) reported that the average weight loss at one year after surgery was 58.4% excess weight (1). Two years after surgery, 65 percent of patients with Type 2 diabetes were able to stop their medication.

eLigibiLity for bariatriC SurgeryTo be eligible for bariatric surgery, a number of criteria must be met (National Institute for Health and Care Excellence (NICE) 2014 (Table 1) (2). In the NHS, patients are referred in for surgery by the Tier 3 medical obesity services. The patient will undergo a comprehensive multidisciplinary team (MDT) assess-ment which includes exploring the ben-efits and risks of surgery. The dietitian plays a key role in the assessment of the patient’s understanding of bariatric sur-gery and ability to comply with postop-erative dietary advice and cope with the emotional impact. Not all patients will go forward for surgery as the team may consider some patients to be too high risk or recommend further investigation and treatment. Other patients will de-

cide that surgery is not for them or that the timing is not appropriate.

impaCt on diet and nutritionAll of the surgical procedures impact on dietary and nutritional intake (Table 2). The gastric bypass, sleeve gastrectomy and duodenal switch procedures affect the absorption of micro and macronu-trients to varying degrees. The special-ist bariatric dietitian plays an important role is supporting patients through their weight loss journeys and ensuring nu-tritional needs are met. Following surgery, all patients are advised to progress their diet slowly, beginning with a liquid diet before moving onto blended food, soft food and then foods of a more normal tex-ture. They must learn to chew their food well, eat slowly and avoid having drinks with meals. Certain textures of food are difficult to manage for exam-ple, roast or grilled meats and poultry, bread, rice and pasta. These can be re-placed with casseroled meats and poul-try, crisp breads, crackers and toasted bread and potatoes. The initial portion sizes are very small, but will increase over time. Patients need support to make the dietary changes including the planning of meals. Some patients may struggle to follow the advice. If they try foods of an inappropriate texture or do not chew their food, they may find it becomes lodged in the gastric pouch causing pain and discomfort. This may then lead to food avoidance /phobias or replacement with soft high calorie foods

bAriAtriC Surgery And the imPortAnCe of nutrition

mary o’kaneConsultant dietitian (adult obesity), Leeds teaching Hospitals nHS trust

mary is a Consultant dietitian supporting patients with severe and complex obesity in the medical and surgical obesity pathways. member of bomSS council. member of niCe clinical guidelines obesity 2006 and 2014.

the prevalence of obesity in the uk continues to rise and is associated with many health issues such as diabetes, metabolic syndrome, obstructive sleep apnoea and osteoarthritis. the focus of treatment is on dietary, activity and lifestyle changes; however, for those with severe and complex obesity, bariatric surgery may be a treatment option.

obeSity Surgery


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References: 1. Fell et al (2000) Aliment Pharmacol Ther 14 (3) : 281-9. 2. Afzal et al (2005) Dig Dis Sci 50 (8) : 1471-5. 3. Lionetti et al (2005) JPEN 29 (4 suppl): S173-5. 4. Bascietto et al (2004) J Pediatri Gastro Nutr 29 supplement 1: S106-S107. 5. Borrelli et al (2006) Clin Gatro Hepatol 4(6): 744-53. 6. Buchanan et al (2009) Aliment Pharmacol Ther 30:501-507. 7. Phylactos et al (2001) Act Paedi 90(8) : 883-8. 8. Rubio et al (2011)Aliment Pharmacol Ther 33: 1332-1339. 9. Gavin et al (2005) J Human Nut Diet 18: 337-342. 10. Beattie et al (2006) Arch Dis Child 91 (5): 426-432. 11. K.J. Werkstetter, et al (2011) JPGN 2011 ;52(suppl 2) E212.

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and a diet of poor quality (3). Unfortunately, soft and crispy textured foods such as crisps, biscuits, cakes and ice cream are easy to consume. In addition, the sleeve gastrectomy, gastric bypass and duodenal switch affect absorption. For all of these procedures, the absorption of cal-cium, vitamin D, vitamin B12, zinc, copper and selenium may be reduced (4, 5). The duodenal switch also impacts on the absorption of fat, pro-tein and fat soluble vitamins and so carries ad-ditional risks. Consequently patients are advised to take additional multivitamin and mineral supplements.

nCepodThe National Enquiry into Patient Outcome and Death 2012 report ‘Too Lean a Service’ reviewed the bariatric patient journey from referral to post-surgical follow up and made a number of recom-mendations (6). In the report’s foreword, Bertie Leigh, NCEPOD chairman, said, “If changes in eating behaviour are to be sustained, the advice of the dietitian will be invaluable. If surgery is to be sufficiently radical to resolve problems of extreme obesity in isolation, the dangers of mal-nutrition cannot be avoided with confidence.” Recommendations included access to good qual-ity postoperative dietary advice and a continu-ous long-term follow up plan.

bomSS SurveyA survey of current practice of British Obesity and Metabolic Surgery Society (BOMSS) mem-bers with respect to nutritional assessment and monitoring of patients undergoing bariatric sur-gery was undertaken in 2012 (7). This showed that whilst there were areas of good practice, there was also considerable variation. It high-lighted variation in nutritional monitoring and the use of vitamin and mineral supplements. Al-though the American Association of Clinical En-docrinologists, The Obesity Society and Ameri-can Society for Metabolic and Bariatric Surgery (AACE/ASMBS/TOS) had published guidance (Medical Guidelines for Clinical Practice for the peri-operative Nutritional, Metabolic and Non-surgical Support of the Bariatric Surgery Patient), many centres had found this difficult to implement (4). BOMSS council agreed that UK guidance was needed and a working group

led by Mary O’Kane was formed. Its remit was to develop the first UK guidance on nutritional monitoring and supplementation for patients undergoing bariatric surgery.

bomSS guidanCeAs part of the BOMSS survey, relevant literature, including other guidelines, was reviewed (7). The working group agreed the BOMSS guidance would cover pre-operative assessment, post-op-erative nutritional monitoring, abnormal results and clinical problems and vitamin and mineral supplementation. A further literature review was undertaken. Writing the guidelines was a challenge. Whilst the AACE/ASMBS/TOS guidelines were comprehensive, they were difficult to apply in practice in the UK. There were significant dif-ferences in the recommendations around vita-min D in the US and usual practice in the UK. It was agreed that the BOMSS guidelines should be practical and easy to implement and address many of the clinical concerns. Where there were no clear conclusions from the literature, consensus opinion was reached. Recommendations were made about pre-oper-ative nutritional assessment, post-operative nu-tritional monitoring and frequency, vitamin and mineral supplements and clinical problems/ab-normal blood results. The draft guidelines went out to wide consultation within BOMSS and there was healthy debate. In addition, the views of endocrinologists were sought, especially con-cerning vitamin D. The final version ‘BOMSS Guidelines on perioperative and postoperative biochemi-cal monitoring and micronutrient replacement for patients undergoing bariatric surgery’ was launched in October 2014 and is available from the BOMSS website (8). A summary of vitamin and mineral supplementation is given in Table 3, but the guidelines contain the full recommenda-tions on nutritional monitoring and supplemen-tation.

gp guidanCe At the same time, a working group, led by Helen Parretti from The Royal College of General Prac-titioners, was writing guidelines for the manage-ment of bariatric surgery patients: ‘Ten top tips


obeSity Surgery


for the management of patients post-bariatric surgery in primary care’ (9). As part of this work, a shorter version of the BOMSS guidance was produced for GPs: ‘GP Guidance: Management of nutrition following bariatric surgery’ (10).

niCe CLiniCaL guideLineS 189 obeSityIn the update of the NICE Clinical Guidelines 189 Obesity, the recommendations on longer-term nutritional follow up of bariatric patients were strengthened (2). There is lack of clarity however as to how this will be achieved.

feedbaCk and neXt StepSThe BOMSS nutritional guidelines have been well received by the bariatric surgery commu-nity, GPs and patients and have stimulated de-bate. They are available on the BOMSS website.

The NHS England Obesity Clinical Refer-ence Group is writing the service specification for the follow up of bariatric surgery patients. Mary O’Kane is chairing and leading this sub-group and the guidelines will play a key part of this work. Defining the components of the lon-ger-term follow up of these patients is a chal-lenge. Generally, the bariatric centres are only commissioned to provide two years follow up after the bariatric procedure with care returning to the GP. Although the bariatric centre has a responsibility to ensure that there is clear com-munication at the time of discharge around nu-tritional monitoring and vitamin and mineral supplementation, there is no robust mechanism for ensuring lifelong nutritional monitoring. This is stimulating active discussion in the sub-group as to how it is best addressed.


obeSity Surgery

Bariatric surgery is a treatment option for people with obesity if all of the following criteria are fulfilled:

• TheyhaveaBMIof40kg/m2ormore,orbetween35kg/m2and40kg/m2andothersignificantdisease (for example, type 2 diabetes or high blood pressure) that could be improved if they lost weight.

• Allappropriatenon-surgicalmeasureshavebeentriedbutthepersonhasnotachievedormaintained adequate, clinically beneficial weight loss.

• ThepersonhasbeenreceivingorwillreceiveintensivemanagementinaTier3service.

• Thepersonisgenerallyfitforanaesthesiaandsurgery.

• Thepersoncommitstotheneedforlong-termfollowup.

Bariatric surgery for people with recent-onset type 2 diabetes:

• OfferanexpeditedassessmentforbariatricsurgerytopeoplewithaBMIof35oroverwhohaverecent-onset type 2 diabetes [12] as long as they are also receiving or will receive assessment in a tier 3 service (or equivalent).

• ConsideranassessmentforbariatricsurgeryforpeoplewithaBMIof30-34.9whohaverecent-onsettype 2 diabetes, as long as they are also receiving or will receive assessment in a tier 3 service (or equivalent).

• ConsideranassessmentforbariatricsurgeryforpeopleofAsianfamilyoriginwhohaverecent-onsettype 2 diabetes at a lower bmi than other populations, as long as they are also receiving or will receive assessment in a tier 3 service (or equivalent).

table 1: niCe criteria for bariatric surgery

The BOMSS nutritional guidelines have been well received by the bariatric surgery community, GPs and patients and have stimulated debate.


15007 HCP Anamix Jnr Powder A4 Advert Resized.indd 2 23/06/2015 16:50


obeSity Surgery

Bariatric surgical procedure

impact on nutrition

gastric band no impact on absorption; however an over tight gastric band affects nutritional intake and quality of diet

Sleeve gastrectomy may be some impact on absorption especially iron and vitamin b12

gastric bypass impacts on absorption of iron, vitamin b12, calcium and vitamin d and may impact on trace elements

duodenal switch impacts on absorption of protein, fat, calcium, fat soluble vitamins and trace minerals

table 2: impact of bariatric surgery on nutrition (summary)

Surgical procedure Vitamin and mineral supplements

gastric band, gastric bypass, sleeve gastrectomy, duodenal switch

multivitamin and mineral supplement

gastric bypass, sleeve gastrectomy, duodenal switch

iron, calcium, vitamin d, vitamin b12

duodenal switch additional fat soluble vitamins

all proceduresSupplement with additional thiamine and vitamin b Co strong immediately if there is prolonged vomiting

table 3: nutritional supplements and surgical procedure (summary)

references1 Welbourn R, Small P, Finlay I, Sarela A, Somers S, Mahawar K et al. National Bariatric Surgery Registry: Second registry report 2014. ISBN 978-0-

9568154-8-4. Oxfordshire: Dendrite Clinical Systems Ltd2 National Institute for Health and Care Excellence (2014) NICE CG189. Obesity: identification, assessment and management of overweight and obesity in

children, young people and adults [internet], London: National Institute for Health and Care Excellence. Available from www.nice.org.uk/guidance/cg1893 Sarwer DB, Dilks RJ, West-Smith L. Dietary intake and eating behaviour after bariatric surgery: threats to weight loss maintenance and strategies for

success. Surg Obes Relat Dis 2011; 7(5): 644-6514 Mechanick JI, Kushner rF, Sugerman HJ, Gonzalez-campoy M, collazo-clavell ML, Guven S et al. american association of clinical endocrinologists,

The Obesity Society and american Society for Metabolic and bariatric Surgery. Medical guidelines for clinical practice for the peri-operative nutritional, metabolic and non-surgical support of the bariatric surgery patient. Endocrin Pract. 2008; 14(S1): 1-83

5 Mechanick JI, Youdim a, Jones Db, Garvey WT, Hurley DL, McMahon MM et al. clinical practice guidelines for the peri-operative nutritional, metabolic, and non-surgical support of the bariatric surgery patient - 2013 update: Co-sponsored by the American Association of Clinical Endocrinologist, The Obesity Society, and American Society for Metabolic and Bariatric Surgery. Surg Obes Relat Dis. 2013; 9(2): 159-191

6 National confidential enquiry into Patient Outcome and Death. Too Lean a Service? a review of the care of patients who underwent bariatric surgery. London: Dave Terrey; 2012

7 O’Kane M. Bariatric surgery, vitamins, minerals and nutritional monitoring: A survey of current practice within BOMSS. [MSc dissertation]. Leeds, England: Leeds Metropolitan University; 2013

8 O’Kane M, Pinkney J, Aasheim ET, Barth JH, Batterham RL, Welbourn R. BOMSS Guidelines on peri-operative and post-operative biochemical monitoring and micronutrient replacement for patients undergoing bariatric surgery adults [internet], London: BOMSS. Available from www.bomss.org.uk/wp-content/uploads/2014/09/bOMSS-guidelines-Final-version1Oct14.pdf

9 Parretti HM, Hughes CA, O’Kane M, Woodcock S, Pryke R. Ten top tips for the management of patients post-bariatric surgery in primary care [internet], London: Royal College of General Practitioners. Available from www.rcgp.org.uk/clinical-and-research/clinical-resources/nutrition/~/media/Files/CIRC/Nutrition/Obesity/rcGP-Top-ten-tips-for-post-bariatric-surgery-patients-in-primary-care-Nov-2014.ashx

10 O’Kane M, Pinkney J, Aasheim ET, Barth JH, Batterham RL, Welbourn R. GP Guidance: Management of nutrition following bariatric surgery [internet], London: BOMSS. Available from www.bomss.org.uk/wp-content/uploads/2014/09/GP_Guidance-Final-version-1Oct141.pdf

ConCLuSionBariatric surgery is an appropriate treatment op-tion for some patients with severe and complex obesity, providing certain criteria are met. It can result in significant weight loss and resolution or improvement in comorbidities. If patients receive the correct advice and support and are compli-

ant, there should be minimal risk of nutritional issues. Long-term nutritional monitoring and compliance with vitamin and mineral supple-ments are essential components of aftercare. The BOMSS guidelines give clear recommendations which support the care of these patients and may stimulate future research in this area.

www.nice.org.uk/guidance/cg189

www.bomss.org.uk/wp-content/

www.rcgp.org.uk/clinical-and-research/clinical-resources/nutrition/~/media/Files/CIRC/

www.bomss.org.uk/wp-content/uploads/2014/09/GP_Guidance-Final-version-1Oct141.pdf



Five years on seemed a good time to can-vas the views of patients and carers made possible by a small Research into Practice Grant from The East Midlands Collabo-ration for Leadership in Applied Health Research and Care (CLAHRC). Although I had been part of the Nottingham HETF service since 1999 and was involved in many of the changes that had taken place, at the time of the project I had little direct patient contact and would be unknown to the patients and carers.

baCkgroundNICE Guidance (2006) recommended a multi-professional team approach for tube-fed patients at home, with individu-alised care plans, including monitoring and aims, and training for patients and carers to manage tubes, delivery systems, procedures and regimen, recognise risks and troubleshoot common problems. Routine and emergency contact numbers, information about delivery and regimen, contact details for delivery company and instruction manuals should also be pro-vided. Before 2007, small, separate dietetic teams of one to three staff provided HETF support throughout Nottinghamshire, aiming to meet NICE guidance, but strug-gling to cope with growing demand and complexity. Since 2007, gradual change has led to the creation of one service based within a single organisation, aim-ing to provide consistent best practice for all HETF patients within Nottingham and Nottinghamshire. Combining existing budgets with new funding, specifically for nutritional

products and ancillaries, enabled better use of existing funds (e.g. economy of scale, shared approach), with savings ploughed into service development in-cluding staffing. A coordinated service with increased staffing, including special-ist nursing and support workers, meant that there was time to provide training for all patients and carers, as well as school and community nurses and care homes. Commercial partners were monitored more carefully and liaison with part-ners in hospital and community were strengthened. The overarching direction of change was from inconsistency and a ‘fire fighting’ approach towards planned and equitable care. In 2012, Nottinghamshire had a single HETF Service with a team of di-etitians and dietetic assistants (18wte cf 5wte in 2007) based together and work-ing to shared guidelines to support adults and children. A locally agreed patient pathway allowed better moni-toring of patients and resources, a flex-ible response to external change and the development of a supportive team approach, including close working relationships with hospital dietitians and other partners. This service change happened in the context of many NHS changes and increasing pressure on funding, with further change being planned to ensure future sustainability.

tHe proJeCtI carried out a small retrospective survey of home enterally tube-fed patients and their carers who had been in contact with

five yeArS of ChAnge: A vieW from PAtientS And CArerS

gillian Whitedietitian

gillian has dietetic experience in oncology, palliative care and nutrition support. She held the post of therapy Services manager at nottingham university hospital, which included leading the development of nottinghamshire’s home enteral tube feeding Service, until october 2013.

an innovative nutritional products contract, awarded in 2007, was the catalyst for significant development of the Home enteral tube feeding (Hetf) support for adults and children across Nottinghamshire. changes made during this period had clear benefits for service provision and costs, but the impact on patients and carers had never been formally reviewed.

Home enteraL tube feeding ServiCeS


the HETF team since 2007, electing to talk directly to a small number of individuals about their expe-riences. Of the active 655 patients on the HETF da-tabase in May 2012, 159 started home enteral feed-ing before 2007 (i.e. for the whole of this period), but only 80 of these were living in their own homes with more involvement in feed delivery and care. From this group, seven patients fully supported by the core HETF team, rather than sharing care with specialist hospital colleagues, were interviewed, representing a cross section of age groups and managed by different members of the team. Team meeting records and reports, plus dis-cussion with long-standing team members helped identify the variety of changes made since 2007. As well as planned changes linked to the new contract (for example moving to an ‘off script’ system and change of feeding pump in hospital and commu-nity), there were wider changes, such as the devel-opment of Clinical Commissioning Groups, Trust mergers, responding to national guidance such as NPSA alerts, and practical changes such as moving office, new staff, change of feed and equipment, record keeping and electronic systems. Discus-sion with the team also helped form an interview schedule with key questions to be used in all the in-terviews (see Box 1). Interviews started with open exploratory questions about individual experience, then moved on to asking questions about specific changes that we knew had taken place. Interviews usually took place in patients’ homes and were recorded; initial written notes were typed, then re-viewed and expanded by listening to the interview recording. The format and outcomes of the project were discussed with a patient representative for more objective feedback about content and clarity, as well as with the CLAHRC team.

findingSOver 40 changes were identified, including con-tractual change, feed and equipment, staffing, re-sources, costs and organisation; but many of these were ‘backroom’ changes supporting team work-ing or systems of care. None of the patients or carers interviewed re-called the change from prescribed enteral feeds to an ‘off script’ approach, seen by the team as the most significant change in 2007. Indeed, few of the changes listed were highlighted directly, although, with prompting, some people remembered changes

such as feed reformulation or a new type of pump. Changes to feeding regimen or routine equipment (e.g. syringes) were more memorable depending on impact on the individual. “As a user I have noticed very little, which is fantastic! There may be massive change behind the scenes, but dietetic services ‘hide’ the change so it doesn’t impact on families which is a real benefit.” “Changes happen but aren’t noticed. One was the feeding pump; we preferred the old type and kept that, but might not have given it long enough.” All the patients and carers knew how to contact their dietitian and the HETF service if needed. Re-lationships with dietitians, who carry out regular face-to-face reviews, were stronger than with as-sistants, who do telephone reviews and help with ordering and problem solving. Planned regular contact was viewed very positively by all those in-terviewed, with positive feedback about the feed provider and delivery service confirming their an-nual patient survey. The team supports a significant number of patients for more than five years, with trust and confidence building up over time and developing a therapeutic relationship which supports patient care. This is especially important when tube feed-ing starts in childhood and in the transition from paediatric to adult services, including change of dietitian; these are often all traumatic times. “Very positive about the impact of feeding. Since had gastrostomy health improved, no longer back and forward into hospital, chest improved, ‘never looked back’. Initially reluctant but would recommend it to anyone now.” Early experiences of feeding could be espe-cially traumatic and the interviews reinforced the importance of the team during the first few months of feeding and during periods of change. “To start with I wanted more contact, lot to learn. Getting used to new dietitian, no contact with assistant yet.” “It’s really nice to talk outside the hospital en-vironment, face to face, to have time to talk rather than rushing in the hospital. Someone comes into your home and sits opposite you at the table, you talk more, explain how you are doing it at home, talk about problems at home instead of hospital where it’s a different world.” Good communication was important, with some requests for more explanation of things that




the team may take for granted, such as the role of assistants and out-of-hours services. Patients or carers contacted were pleased to be give feedback and would be willing to contribute to further reviews or service development.

diSCuSSionAnyone working in the NHS is aware of working in a constantly changing environment, but it was helpful to stop and reflect, specifically on the va-riety and scope of the change experienced by this specific team. Small changes are easily forgotten and this review showed more change than I initial-ly expected. Despite this, it was striking how little the people interviewed noticed; changes that were important to the team seemed to have minimal im-pact whereas issues that seemed small to healthcare staff loomed large for patients and carers. Prepara-tion for significant changes aimed to minimise the impact on patients, for example, the move from feed being prescribed by the GP to being ordered by the dietitian, which had major implications for the service, went largely unnoticed and generated few of the problems predicted. Changes to feed and equipment in regular use were more signifi-cant for patients and carers. Explanation about the reasons for change as well as the practical impact was welcomed by patients and carers, for example, regular reviews of ancillary equipment, such as sy-ringes, to ensure best value. There was very positive feedback about the ser-vice and staff, especially the dietitians. The role of dietetic assistants, who carry out telephone reviews, was less clear to patients and carers, an initial face-to-face visit by the assistant would help start their relationship with people they will support mostly by telephone. Use of new technologies such as Skype, could also be considered with more explanation of the assistant’s role by dietitians during visits. Pa-tients and carers, especially in paediatrics, placed great value on developing a relationship with indi-vidual HETF team members, particularly in long-term tube feeding. Some staff changes are unavoid-able, while staff rotation and varying caseload can provide better and more flexible support in the longer term. Recognising the importance of relation-ships with patients and carers helps the team explore ways of minimising the impact of this sort of change, for example, making time for a personal handover to a new dietitian where possible, or producing a news-

letter with regular updates about staffing and service issues. These interviews suggested that it would be beneficial (and not too difficult) to involve patients and carers in service design and review, perhaps also in staff training and induction.

ConCLuSionSOverall, these interviews provided positive feed-back for the HETF service and the changes that have been made, with much to learn by making time to listen directly to patients and carers. Not surprisingly, staff perceptions were different to those of patients and carers; issues that loomed large for the team had little impact on service users, partly because we worked to prevent negative im-pact, but also because their concerns are different. A patient-centred approach, including listening to patients and carers, as well as explaining and prob-lem solving, is at the heart of HETF support as of so many other areas of dietetics.

interview outline• Introduceselfandtalkalittleabouttheservice.• Askpermissiontorecordtheinterviewand

show equipment.• Introducetheproject,explainthatthereare

no right or wrong answers, not checking up ontheteam,justwanttofindoutabouttheirexperience.

• Whathavetheynoticedsince2007(withoutprompting)?

• Askaboutspecificchangesandhowthathasaffected them. - no longer need a prescription for feed

from the gp. - dietitian and assistant in contact every

three months at least to review feeding. - Standardising equipment to get best

value, e.g. syringes. - team based together on one site, more

staff.• Haveotherservicechangesaffectedthem

positively or negatively, e.g. equipment changes, changes to delivery service, electronic systems?

• Aretheyawarethattheyhaveanameddietitianand regular system of reviews including link with a dietetic assistant?

referenceNIce (2006) Nutrition Support in adults, UK

Acknowledgement: with thanks to East Midlands CLAHRC Research into Practice Project





Web WatCH

Web WAtCh

online resources and useful updates.

BoWel caNcer diagNoSiS StatiSticS

pHySical actiVity StatiSticSThe British Heart Foundation’s latest publication Physical Activity Statistics 2015 shows that 44 percent of British adults perform no moder-ate physical activity. A comparison of 28 countries from the European Union ranks the UK in 16th position based on the frequency of moderate physical activity performed in the last seven days. The Netherlands lead the way in Europe with only 14 percent of adults performing no moderate physical activity, fol-lowed by Finland and Denmark (23 percent). The British Heart Founda-tion expressed their concern that physical inactivity is contributing

demeNtia: a puBlic HealtH priority

Blood aNd traNSplaNt Strategic plaN

older people aNd caNcerPublic Health England and NHS England have updated the publication Older People and Cancer originally pub-lished in December 2014. This report summarises what is known about old-er people and cancer, drawing together information from different sources and studies. This report defines older people as those aged 75 and over and is focused on England; however, other age groups and geographies are presented and compared where it is useful to do so. Each chapter provides high level key messages, followed by a more comprehensive overview of the evidence and statistics. www.ncin.org.uk/publications/

caNcer SurViVal iN tHe ukPublic Health England’s National Cancer Intelligence Network has pub-lished in conjunction with Cancer Re-search UK, Major resections by cancer site, in England; 2006 to 2010. Cancer survival in the UK is lower than in many comparable countries. This dif-ference may be caused by a number of factors, including later diagnosis and less access to optimal treatment. Although surgery can be used in combination with radiotherapy and/or chemotherapy, experts believe that it is responsible for around half of the cases where cancer is cured, making it the most effective form of treatment. This report examines the variation in this key cancer treatment: it presents major surgical resections for 20 sites by sex and age-groups, using the most recently available data in England. www.ncin.org.uk/publications/

to the rise of coronary heart disease. www.bhfactive.org.uk/news-

Recent figures released by the item/305/index.htmlcharity Beating Bowel Cancer show that the majority of bowel cancer patients are still diagnosed too late, costing the NHS millions. There is currently a large variation within the NHS across England in terms of early diagnosis of bowel cancer, with the best performing Clinical Commissioning Groups diagnos-ing 63 percent of patients early, compared with only 30 percent in the worst. The figures show that if every NHS region in England performed as well as the best at di-agnosing bowel cancer early (stages 1 and 2), 3,200 lives could be saved and £34 million could be diverted to other bowel cancer services and treatments. www.beatingbowel-cancer.org/news/apr2015/lack-progress-diagnosing-bowel-cancer

The World Health Authority has published Dementia: a public health priority, jointly developed by WHO and Alzheimer’s Disease Interna-tional, aiming to raise awareness of dementia as a public health priority, advocating action at international and national levels. The report is expected to facilitate governments, policy-makers, and other stake-holders to address the impact of dementia as an increasing threat to global health. www.who.int/men-tal_health/publications/demen-tia_report_2012/en/

NHS Blood and Transplant has published its Strategic Plan 2015-2020. It sets out how the organisa-tion plans to reduce the price of blood to £120 per unit as part of their five-year plan, which also out-lines action to: provide enhanced digital connections with blood donors to improve their experience before, during and after donation; provide a higher quality of service for hospital customers and those who use NHS Blood and Trans-plant products; match world-class performance in organ donation and increase the number of organs available for transplantation. www.nhsbt.nhs.uk/news-and-media/news-articles/news_2015_06_03.asp

www.ncin.org.

www.ncin.org.uk/


http://www.bhfactive.org.uk/news-item/305/index.html

https://www.beatingbowelcancer.org/news/apr2015/lack-progress-diagnosing-bowel-cancer

http://www.who.int/mental_health/publications/dementia_report_2012/en/

http://www.nhsbt.nhs.uk/news-and-media/news-articles/news_2015_06_03.asp

NatioNal ScreeNiNg programme recommeNdatioNSThe UK National Screening Com-mittee has published the minutes from its latest meeting setting out its recommendations for national screening programmes. The com-mittee upheld its recommendation against screening adults in the UK for bladder cancer and also made recommendations against introducing national screening programmes for depression in adults and screening newborn babies for amino acid metabolism disorders, fatty-acid oxidation disorders and galactosaemia. www.gov.uk/government/news/national-screening-programme-for-bladder-cancer-not-recom-mended

poVerty iN tHe ukThe Joseph Rowntree Founda-tion has published three reports exploring poverty:• Economic theories of poverty - An overview of the main economic theories relating to the causes of

preScriptioN aNd otHer NHS cHargeS

Nice SHared learNiNg caSe Study; irritaBle BoWel SyNdrome

traNSformiNg SerViceS for people WitH learNiNg diSaBility

eVideNce Summary: NeW mediciNeS - ulceratiVe colitiS/type 2 diaBeteS


Web WatCH

demeNtia from tHe iNSideThe Social Care Institute for Excellence has produced a new video resource ‘Dementia from the inside’. This film highlights what it might feel like to live with dementia. Viewers will experience a little of what it is like to find yourself in a world that seems familiar and yet doesn’t always make sense. The incidents pic-tured in this film and memories recounted are based upon true experiences gathered from people living with dementia. It is aimed at professionals and the public. www.scie.org.uk/socialcaretv/video-player.asp?v=dementia-from-the-inside

NHS England has established five fast-track sites that will test new approaches to reshaping services for people with learning disabili-ties and/or autism, to ensure more services are provided in the community and closer to home. The five sites: Greater Manchester and Lancashire; Cumbria and the North East; Arden; Herefordshire and Worcestershire; Nottingham-shire; and Hertfordshire will bring together organisations across health and care that will benefit from extra technical support from NHS England. The sites will be able to access a 10 million transfor-mation fund to kick-start imple-mentation from autumn 2015. www.england.nhs.uk/ourwork/qual-clin-lead/ld/transform-care/ft-sites/

The House of Commons Li-brary has published a briefing paper The prescription charge and other NHS charges. This paper sets out the provision for pre-scriptions and dental charges, which groups are exempt, and explains where charges vary in devolved countries. It also cov-ers efforts to reduce prescrip-tion wastage and examines the future of NHS charges. http://researchbriefings.files.parlia-ment.uk/documents/CBP-7227/CBP-7227.pdf

NICE has added Improving evi-dence-based management of irritable bowel syndrome across Somerset to its shared learning database. The shared learning example shows how NICE guidance and stan-dards have been put into practice. www.nice.org.uk/sharedlearn-ing/improving-evidence-based-management-of-irritable-bowel-syndrome-across-somerset

NICE has published two new evidence summaries new medicines, the details are as fol-lows: Ulcerative colitis: budes-onide multimatrix (Cortiment) (ESNM58) and Type 2 diabetes: dulaglutide (Trulicity) (ESNM59). Evidence summaries: new medi-cines’ provide a summary of the published evidence for selected new medicines, or for existing medicines with new indications or formulations, that are considered to be of significance to the NHS. The strengths and weaknesses of the relevant evidence are critically reviewed within the summary, but the summaries are not formal NICE guidance. www.nice.org.uk/advice/esnm58 and www.nice.org.uk/advice/esnm59

and responses to poverty in the UK. www.jrf.org.uk/publications/economic-theories-poverty• A philosophical review of poverty - A review of how poverty has been understood and analysed in contemporary political philosophy. www.jrf.org.uk/publications/philosophical-review-poverty• Sociological perspectives on poverty - Discusses contested con-cepts that relate to how poverty may be understood from a socio-logical/social theory perspective. www.jrf.org.uk/publications/sociological-perspectives-poverty

www.gov.uk/government/news/

www.jrf.org.uk/publications/

www.jrf.org.


http://www.jrf.org.uk/publications/economic-theories-poverty

http://www.scie.org.uk/socialcaretv/video-player.asp?v=dementia-from-the-inside

http://www.england.nhs.uk/ourwork/qual-clin-lead/ld/transform-care/ft-sites/

http://researchbriefings.files.parliament.uk/documents/CBP-7227/CBP-7227.pdf

http://www.nice.org.uk/sharedlearning/improving-evidence-based-management-of-irritable-bowel-syndrome-across-somerset

http://www.nice.org.uk/advice/esnm59/chapter/Key-points-from-the-evidence


Career

d i e t e t i c J O B S . c o . u k

To place a job ad here and on www.dieteticJOBS.co.uk

please call 0845 450 2125 (local rate)

puBlic HealtH NutritioNiSt/dietitiaN (part-time) – BrigHtoN & HoVe food partNerSHipAre you interested in being part of a team of community based public health nutritionists and dietitians within a not-for-profit organisation? The post holder will offer advice and support to groups and individuals around healthy eating and weight management. You will need to have at least one year’s relevant work experience using behavioural change skills, delivering 1-1 clinics and group weight management programmes. 22.5 hrs per week; sala-ry £15,540 per annum. Maternity cover post to 19th August 2016. Secondments will be considered. Applications from www.bhfood.org.uk or email [email protected] Tel: 01273 431700. Closing date: Monday 3rd August 2015.

digital NutritioN coordiNator - coca-cola great BritaiN - loNdoN

SpeCiaLiSt paediatriC dietitian - S engLandBand 7 Specialist Paediatric Dietitian with experience of diabetes, carbohydrate counting and insulin pumps for an ongoing post. The role is hospital based in the South of England. Email your CV to [email protected]. Our rates are competitive in the current market; we offer assistance with relocation and hospital accommodation. We provide you with a current CRB, full occupational health check and can organise your mandatory training. PJ Locums is an NHS Government Procurement and LPP framework approved supplier for Allied Health, Health Science personnel and nurses.

band 6 aCute dietitian - eSSeXBand 6 Dietitian is required for an acute post to start as soon as possible. This is a full-time post covering adult wards. Please call 01277 849 649 or email [email protected] www.elitedietitians.com

band 6 aCute dietitian - berkSHireBand 6 Dietitian is required to cover general acute wards for approximately eight weeks, starting as soon as pos-sible. This is a full-time post, 37.5 hours per week. Please call 01277 849 649 or email [email protected] www.elitedietitians.com

renaL dietitian, band 6/7 - midLandSWe are looking for a Renal Dietitian Band 6/7 to com-mence at the beginning of August for a period of three to four months, preferably a car owner/driver as some cover will be needed at a satellite unit. Hours are negotia-ble full time/part time. Please call 01277 849 649 or email [email protected] www.elitedietitians.com

band 5/6 paediatriC Community dietitian berkSBand 5/6 Paediatric Community Dietitian is required for five days a week covering general clinics. Caseload will include: allergies, weight management, faltering growth and fussy eating. Experience in children’s diabetes and paediatric home enteral feeding would be an advan-tage. Caseload is all outpatient based so ability to travel between bases and places of work is needed. Start date 27th July 2015. Please call 01277 849 649 or email [email protected] www.elitedietitians.com

Employer: CCA International - Full time (37.5 hours/week-ly). The Digital Nutrition Coordinator provides quality and responsive support to Coca-Cola Great Britain stake-holders, primarily in the area of Health & Nutrition on So-cial Media. They are a self-motivated nutritionist or dieti-tian who can provide professional, courteous, and prompt support. Responsible for social media strategy and creat-ing evidence-based informative content, as well as help-ing with other scientific communications with stakehold- ers. Responsibilities include: working with Public Affairs & Communications and Scientific & Regulatory Affairs teams to establish areas for support; working with Senior Account Manager, Social Media Strategist and Analysts and other divisions to coordinate social media postings as appropriate across the Company’s digital channels; providing a level of expertise in the area of Health & Nutri- tion in Social Media and other channels; developing and maintaining social media training resources, guidelines and policies; identifying relevant scientific content for nutrition communications and social media strategy and identifying influencers via social channels. Excellent communication and strong analytical skills, ability to multi- task and work independently. Strong knowledge about health and nutrition issues and social media. For more information click here…. Please send your CV and cover letter to: [email protected]. Closing date: 24th July 2015


www.bhfood.org.uk

www.elitedietitians.com












http://www.elitedietitians.com/Pages/default.aspx

http://www.nhdmag.com/dieteticjobs_94456.html


band 5/6 Community dietitiannortH WeSt engLandNorth West England Band 5/6 Community Dietitian is required to cover a nutrition support role, cover-ing clinics and home visits, applicant must have own transport. Starting as soon as possible, full time until the end of August. Please call 01277 849 649 or email [email protected] www.elitedietitians.com

band 6 paediatriC Community dietitian eSSeXBand 6 Paediatric Community Dietitian is required to cover either a full- or part-time role. You don’t neces-sarily need a car as you could be based at one site do-ing clinics. To start ASAP until end of August. Please call 01277 849 649 or email [email protected] www. elitedietitians.com

band 6 paediatiC aCute & Community dietitian - kentStarting middle of July, this is a two-day post cover-ing both community and acute work – a car is required for this post to carry out the community aspect. Please call 01277 849 649 or email [email protected] www.elitedietitians.com


Career

We urgently require dietitians for immediate vacancies

To find out your options call or email

Freephone: 0800 032 0454 [email protected]

• PJ Locums is an NHS Buying Solutions framework approved supplier for allied health

• Our aim is to find you the right person and the right job

• We offer inpatient and community UK & NI coverage

• Competitive rates

www.pjlocums.co.uk

uNiVerSity of NottiNgHam - ScHool of BioScieNceS Modules for Dietitians and other Healthcare Professionals• Obesity Management Module - 30th Sep, 2015• Diabetes 1 & 2 - 14th Jan, 2016For further details please email [email protected], tel: 0115 951 6238 or check out the University website at www.nottingham.ac.uk/biosciences and click on short courses then ‘for practising dietitians’.

eventS And CourSeS

14th to 15th July - Behaviour change iiDerby www.ncore.org.uk

14th to 16th august - international critical dietetics conference Manchester International Conference Centre www.criticaldietetics.org

9th September - Bda Branch cpd meetingNorth West England North Wales Branch Lance Dobson Hall, University of Chester Warrington Campus Email: [email protected]


www.nottingham.ac.uk/

www.ncore.org.uk

www.criticaldietetics.org

www.pjlocums.co.uk










The international conference for dieti-tians in Manchester in August has the theme: ‘Doing Justice: shaping change through experience, science and imagi-nation’. There will be debates to con-sider how to promote new understand-ings for advancing health equity, food justice and nutritional wellbeing using diverse means of knowledge creation. The themes of the conference involve a critical examination of the dietetic practice that is shaped by familiar norms, but also shaped by less explicit silences. Critical Dietetics is a fairly new concept, but this event will be the fifth International Conference on this theme. Manchester follows other excit-ing venues of Chicago, Nova Scotia in Canada and Sydney. The venue will be the Manchester International Confer-ence Centre and full details of the pro-gramme and registration are listed on: www.criticaldietetics.org. Star speak-ers will include Dr Clare Gerada, who was the first female Chair of the Royal College of General Practitioners, with a particular interest in female leader-ship, and Food Policy expert Dr Geoff Tansey. The UK host organiser is dietitian Dr Lucy Aphramor, who is one of the founder members of the Critical Di-etetics movement. She describes the trigger of her need to re-examine care concepts from thoughts she had during her first dietetics post. “As I sat in clinic in some of the most deprived areas of

Coventry, us-ing only the knowledge I brought from university, I had a growing sense that I was missing something important that linked people’s lived experience and their health.” In 2004, Lucy won the Rose Sim-monds Special Award, which funded her attendance at the 14th Internation-al Congress of Dietetics in Chicago. This allowed her to develop contacts with many fellow dietitians in the US and Canada, which led to the organi-sation of a seminar in Canada in 2009 entitled Beyond Nutritionism: Res-cuing Dietetics through Critical Dia-logue. It was at this event that a decla-ration was made to launch the concept of Critical Dietetics. Critical Dietetics is interested in sparking conversations about novel ways of approaching the complex so-cial, political and cultural issues en-countered in the broad field of dietetics and nutrition practice, research and ed-ucation. Some of the multiple perspec-tives that define the term ‘critical’ may lead to different, perhaps improved ways, to support nutrition aspects of public health, particularly in relation of social and environmental issues. There is perhaps no full definition of the term Critical Dietetics, but some intentions are captured in the decla-ration agreed in June 2009. It aspires to capture the relationships between food and health as more than the nu-trient contents of foods connecting to

internAtionAl CritiCAl dietetiCS ConferenCe: manchester, 14-16th August 2015

if you are not going to a sunny beach, or to lush hills this summer (= august), you could go somewhere that offers neither of these attractions (= manchester), but promises a chance to meet and mingle with progressive dietitians from around the world.

ConferenCe update

ursula arens Writer; nutrition & dietetics

Ursula has spent most of her career in industry as a company nutritionist for a food retailer and a pharmaceutical company. She was also a nutrition scientist at the british Nutrition Foundation for seven years. Ursula helps guide the NHD features agenda as well as contributing features and reviews.

www.criticaldietetics.org.


physiological effects in the body. It is impos-sible to escape cultural values in discussions of diet and health, but Critical Dietetics attempts to make the assumptions upon which food and health choices are made more visible. Profes-sional strengths come from openness to diver-sity and debate and themes at the conference will consider many of the social aspects that affect dietetics practice in a scholarly way. It is an opportunity to celebrate what dietitians have achieved and to discuss in what ways the profession could evolve. Topics and themes to be addressed at the conference in Manchester include the fol-lowing:• Doing justice to innovation in nutrition and

dietetic education, practice, activism, re-search and practitioner development.

• Student, practitioner and activists’ experi-ences of speaking and practicing from their own lives and/or disenfranchised positions, or feeling silenced.

• Promoting diverse ways of knowing in di-etetics and nutrition, including embodied knowledge.

• What is the role of the medical humanities in nutrition and dietetics?

• Can creativity be taught?• Arts-based or arts-informed inquiry as a

means for challenging knowledge hierar-chies and supporting knowledge co-cre-ation.

• Creativity, leadership and equity.• What conceptual frameworks support a re-

orientation of health to embrace social jus-tice?

• How can we simultaneously improve nutri-tional wellbeing and avoid healthism?

And there’s more! Five years ago, the first Dietitian as Artist exhibition was held as part of the Dietitians of Canada Annual Conference in Montreal, and Conference attendees are all invited to take part in the follow-on event Mak-ing: An Exhibition of Ourselves. The Manchester conference is an exciting opportunity for more UK dietitians to discover the vibrant, supportive community of Critical Dietetics. Registration is now open at: www.criticaldietetics.org


ConferenCe update

Issue 106 June 2015NHDmag.com

PAEDIATRIC FOOD ALLERGY

Susan WoodSpecialist Dietitian, Ketogenic therapies

KETOGENIC THERAPY FOR ADULTS WITH DRUG RESISTANT EPILEPSY. . . p28


WEB WATCH NEW RESEARCH

Juliana Scapin p13

LIVER DISEASE

OBESITY SURGERY

HOME ENTERAL FEEDING

PROFESSIONAL PROFILE


Since 2009

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Simply search for NHD Magazine

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In 2012, I got the job as dietetics assis-tant at Fresenius - a renal dialysis unit in Leicester, where I worked two days a week. I later had an additional job in medical sales with Nutrinovo, supply-ing hospitals with nutritional supple-ments. In 2013, I started a Dietetics degree at Coventry Uni-versity to gain my Registered Dietitian (RD) title which will hopefully open more doors for me and my career. I still work part time at Fresenius, although I am currently tak-ing a year out on maternity leave.

in tHe renaL diaLySiS unitFresenius is a sat-ellite unit, which takes NHS patients who have stage 5 kidney disease and who require dialysis. It is a medium-sized unit with around 114 patients, who come in for haemodialysis (HD) three times a week. Generally, the patients stick to the same shift every week, so they really get to know one another and it creates a lovely environment. There is a lot of chatter in the waiting area and across the ward during a shift. It is important that we keep an eye on the patient’s blood results and dry

weight; as HD patients don’t dialyse daily, water and minerals such as potas-sium and phosphorus build up in their system, which can become dangerous if it isn’t controlled properly. Blood results are taken monthly; I review the results, write them up in the patient’s folders and note any out-of-

range results that are passed onto the RD and Multi-disciplinary team (MDT), in a MDT meeting. Patients have access to their own results online, but we also pro-vide a printed copy which gives the patients and our-selves a chance to ask questions when we hand them out. Patients are seen every month for the first six

months of dialysis and then every three months thereafter. Some patients who are on nutritional support, for example, may be assessed more closely and seen more regularly; it is the RD who gener-ally sees them. I carry out anthropometric measure-ments every three months; this consists of a mid-upper arm circumference (MUAC) and dry weight (post HD weight). All new patients also have their height mea-sured and documented. These measure-

A dAy in the life of A renAl dietetiCS ASSiStAnt

Charlotte Jennifer-Louise routennutritionist/dietetics assistant, fresenius

Charlotte is a degree qualified nutritionist with experience working for the nhS and privately both in employed and freelance positions. She enjoys being in the countryside and by the sea, with her family and my dogs. her favourite place is Cornwall.

Whilst studying for my degree in Nutrition at the university of Nottingham, i worked for Nutratech, a company which creates online diet tools and websites. once i had graduated in 2010, i set up my own business route2nutriton and did some work for the NHS and for private companies too. i then went travelling around the world, discovering new cultures and tasting lots of different cuisines.

renaL dietetiCS

. . . as HD patients don’t

dialyse daily, water and

minerals such as

potassium and phosphorus

build up in their system,

which can become dangerous

if it isn’t controlled properly



ments help to determine the patient’s target weight which is important for their comfort and dialysis treatment: if too much water is taken off during HD, the patient’s blood pressure may drop, which often leads to dizziness, cramps and headaches, or if too little is taken off, they can become overload-ed which requires further hospital care. The rou-tine measurements also highlight those patients who may require additional support, for example, if they are losing weight readily. A renal diet can feel very restrictive to patients and can be more difficult to manage if they have other dietary requirements such as coeliac, irrita-ble bowel, diabetes, or if the patient is vegetarian or vegan. It is our job to help make their diets as varied as possible. We often search supermarket websites and visit local stores to find suitable and accessible products for patients. There is a lot of educational material available to the patients as well, such as handouts and diet sheets. Some of my other jobs include: taking pa-tient’s diet history, chasing patient prescription by ringing their doctors or pharmacy to ensure that they are getting the medication and supplements required, creating new dietetic displays for the pa-tient waiting area, photocopying diet sheets (less

interesting!) and writing up new patient files. As a renal dietetic assistant there are certain limitations to my job role- I am not permitted to recommend or supply patients with medi-cation such as phosphate binders, renal multi-vitamins, or nutritional supplements without the permission of a RD. Working within this unit environment, has al-lowed me to build a strong rapport with patients, which has made me appreciate the importance of good patient-practitioner relationships; we must gain a patient’s trust before they feel comfortable enough to open up and be honest about their eat-ing habits. In turn, this makes our job more effec-tive as it ensures that we get accurate informa-tion and can offer tailored advice to help patients achieve nutritional adequacy and optimal health. I find the renal system really interesting as it is very complex and requires some detective work. It can be hard to get some patients to see the importance of diet as part of their treatment; it requires good com-munication techniques to encourage adherence. I thoroughly enjoy my job, there is always something to do or patients to chat to and I can definitely say that it inspired me to continue my studies in dietetics.

renaL dietetiCS

Working within this unit environment, has allowed

me to build a strong rapport with patients, which

has made me appreciate the importance of good

patient-practitioner relationships


To place a job ad in NHD Magazine or on www.dieteticJOBS.co.uk please call 0845 450 2125 (local rate)

dieteticJOBS.co.ukThe UK’s largest dietetic jobsitesince 2009





I was going to discuss this in this issue of Helping, but then we were invited for an overnight stay in the Lake District by my Mother-in-law. This obviously took prece-dence! Whilst there, we visited Allan Bank, a property near Grasmere owned and managed by the National Trust. William Wordsworth lived there for three years and in one of the rooms, Wordsworth’s study, there had been placed an old typewriter with the challenge: ‘What will you write?’ (See pic). Here is my offering, not written, I hasten to add, from the wonderful vista afforded to Wordsworth overlooking the Lake and Rydal Water, but from my din-ing room table overlooking a glass of wine, much later the following evening.

A final helpingO mortal man who canst not seeA weight you are that should not lingerThus I am glad it is not meWho needs to lift more than a finger And we know what will be will beIn life there is no certainty

But I have seen and tell you soThe beauty that you can enjoyUpon this earth so you will knowThe tasks that must you now employLest it be written on your stoneAlongside those who are alone

Stand up and tell me to a manThat wandered lonely as a cloudI hear you all say yes he canAnd gather round, they are so proudThat you have conquered mountains highNow see your world, go touch the sky

the finAl helPing

neil donnelly

Neil is a Fellow of the bDa and retired Dietetic Services Manager. His main areas of interest are weight management and eating disorders

So you have seen obesityWith eyes and mind and heart and soulYour future in your hands to beYour life once fragile, now a wholeThat looks forever o’er the hillsYour golden host of daffodils

A child you were but are no moreNow show your future, let them makeA life well lived for three or fourScore years and 10 and they will takeYour memory on, with thanks to youThey’ll live their life, will do, can do.

Recent figures suggest that over 68 million people in the USA are obese. More than the population of the whole of the United King-dom including Northern Ireland.

a few weeks ago i read an article in a tabloid newspaper about ‘Britain’s fattest man’. Some days later he also appeared on ‘this morning’ television. the article and the programme discussed the ‘takeaway’ lifestyle that this 33-year-old man was living. He was confined to his bed at home and relied on NHS carers. His current calorie intake was estimated to be around 10,000 calories a day. a few days ago i read that he had died. the police said that his death was not being treated as suspicious.


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Issue 106 June 2015NHDmag.com

PAEDIATRIC FOOD ALLERGY

Susan WoodSpecialist Dietitian, Ketogenic therapies

KETOGENIC THERAPY FOR ADULTS WITH DRUG RESISTANT EPILEPSY. . . p28


WEB WATCH NEW RESEARCH

Juliana Scapin p13

LIVER DISEASE

OBESITY SURGERY

HOME ENTERAL FEEDING

PROFESSIONAL PROFILE


Since 2009

(giving you a full year's subscription to NHD Magazine)

Don’t miss out! Keep your professional development up-to-date with the UK’s favourite nutrition and dietetic

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nhd magazine july 2015

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