Children's Health campaign 2017 by Mediaplanet UK&IE

JUNE 2017

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Childrenâ&#x20AC;&#x2122;s Health

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Call the Midwife star, Jenny Agutter, quizzes Sir Tony Hawkhead on child health today P10

RARE CHILDHOOD CONDITIONS

read the stories of the families affected P6

PHOTO CREDIT: TIM JENKINS

3 TOP TIPS for healthy teeth P8

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IN THIS ISSUE

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Chief Medical Officer recommends 60 minutes’ moderate exercise a day

Midwives’ support for mothers during early feeding

Linda Glennie, Meningitis Research Foundation: Why it’s important to vaccinate your child

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The State of UK Child Health

dvancing child wellbeing has always required strong advocacy. Charles Dickens used fiction to draw attention to the plight of children in Victorian England. The Convention on the Rights of the Child was drafted by Eglantyne Jebb, an English primary school teacher driven to campaign for social reform when she witnessed the widespread effects of poverty on children. A UK paediatrician, George Frederic Still, was among those who, at the turn of the last century, argued that children’s diseases – defined by biological development – require specific study. The Royal College of Paediatrics (RCPCH) has long argued for the right of children to benefit from medical research. Many of these concepts were considered radical when first proposed. It seems we are at another such pivotal moment today. Follow us

In January, the RCPCH launched a report in which we scrutinised 25 metrics to define “The State of Child Health” in the UK. We found improvement in some measures, but a worrying picture overall; for example, 40 per cent of five year olds have tooth decay, one in three 10 year olds are overweight or obese and poverty continues to blight children’s lives to an unacceptable degree. What can be done about this? UK scientists were the first to recognise that improving health in pregnancy, infancy and childhood will also reduce the burden of chronic diseases previously thought to arise only in adult life. Respiratory problems in old age are increased by maternal smoking and exposure atmospheric pollutants; obesity increases the risk that a woman and her children and grandchildren will develop diabetes - a condition responsible for

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Professor Neena Modi President, Royal College of Paediatrics and Child Health

“The RCPCH wants to see children’s health and policy research strengthened.”

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the loss of a staggering 288,000 working years, and almost £24 billion in direct and indirect costs. On scientific and economic, no less, moral grounds, the case for investing in child health as a mechanism for building a prosperous, resilient, and forward looking society is now compelling. Recognition of this potential seems overdue. This is why the RCPCH wants to see children’s health and policy research strengthened and a cross-party, cross-departmental child health and wellbeing strategy implemented that will be upheld across successive Parliaments. This will serve the nation well.

The RCPCH is an independent body and is not affiliated with any of the brands included in this campaign. Professor Neena Modi does not advocate the use of any one product over that of another. Neither the RCPCH, nor Professor Modi, has received any payment for this article.

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Project Manager: Kirsty Elliot Email: kirsty.elliot@mediaplanet.com Business Development Manager: Jake Crute Content and Production Manager: Kate Jarvis Digital Manager: Chris Schwartz Content and Social Editor: Jenny Hyndman Designer: Juraj Príkopa Managing Director: Alex Williams Mediaplanet contact information: Phone: +44 (0) 203 642 0737 Email: info.uk@mediaplanet.com

WE BELIEVE IN THE PROTECTIVE POWER OF EVERYDAY HYGIENE HABITS We partner with mums, schools, communities, hospitals and governments to help change habits, because behaviour changes, especially at the societal level, have the power to literally protect lives.

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WHAT IT TAKES TO PROTECT

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Advancing nutrition to reduce allergies Harnessing expertise to pioneer ground-breaking research into the prevention and management of childhood allergy By Ailsa Colquhoun

At this time of year, hay fever is most prevalent, however, many conditions commonly associated with allergy – asthma, eczema and reactions to food – are problematic year-round. By 2050, around four billion people worldwide are expected to develop an allergic condition, costing the global health service up to €151 bn.

Research leader Leading the research into paediatric immunology and disease is specialised nutrition company Nutricia, which has decades of experience in research on prevention and management of cow’s milk allergy across a spectrum of severities. It is a well-established fact that allergies are linked to an excessive immune system response. At the Utrecht Science Park, in the Netherlands, director of the Centre of Excellence Imunology and Professor at the University Utrecht, Johan Garssen, says that, to tackle the growing problem of allergy in children, science must learn from breastfeeding and nature. When an infant is breastfed, a rich combination of bacteria, prebiotics and other ingredients that support the developing immune system pass from mother to infant. When breast feeding is not possible, mums must rely on infant formula to meet baby’s specific needs.

This is where Nutricia learns from the best: breast milk. An infant’s first 1,000 days – from conception to the end of the second year – are critical for immune system development. Professor Nikos Papadopoulos, Professor of Allergy at the University of Manchester and primary adviser to Nutricia on specific allergy trials, explains: “Immune systems are flexible and develop rapidly in the first 1,000 days.”

The power of nutritional science As a leading manufacturer of science-based specialised nutritional products, Nutricia has developed strong partnerships with research scientists and health care professionals. These partnerships are key to delivering high quality, evidence-based specialised nutrition to infants and young children. This is key in offering new solutions for infants and young children with specific needs, such as cow’s milk allergies. As part of his work at Guy’s and St Thomas’ hospital, Consultant Paediatric Allergist, Dr Adam Fox, charts the recent, dramatic increase in the prevalence of allergy, which he describes as now “incredibly common”. Underpinning this are several factors associated with

modern lifestyle, including overuse of antibiotics in farming and in ill-health and the rise of elective csections that deprive the infant of beneficial gut bacteria present in the maternal vaginal tract. Pioneering the development of nutritional ingredients that can support an infant’s immune system is now a key focus of Nutricia’s research, and the roles of preand probiotics are proving particularly exciting. Dr Louise Michaelis, Consultant and Associate Lecturer in Paediatric Immunology and Allergy at Newcastle Upon Tyne Hospitals NHS Foundation Trust, and adviser to Nutricia on clinical trials, explains that research has indicated that infant feeding formulas containing specific pre- and probiotics can rebalance the gut microbiota that are commonly out of balance in infants with cow’s milk allergy. A major research project is now underway to demonstrate the value of synbiotics – a combination of a specific mixture of pre- and probiotic-enriched infant nutrition – in supporting immune fitness, a term used to describe a resilient immune system with an in-built capacity to meet challenges with an appropriate immune response. With conditions such as cancer, diabetes and obesity linked to abnormal immune system response, improving immune fitness

through nutrition has wide scale potential. “The research is a major undertaking,” explains Prof Papadopoulos, “but with allergies increasing so rapidly, it is definitely worth doing.” Dr Louise Michaelis adds: “With Nutricia as our collaborative partner, this research aims to be able to deliver some very important advances in our understanding of the immune system and how this can be modulated through nutrition.” Although there are many factors involved in the development of immune-related conditions, such as allergy, nutrition is one facet that can support the balance of an infant’s microbiota. It is in this area that Nutricia hopes to make a real difference to the lives of families and children with allergy.

If you have any specific queries about this article, please contact Zoë van Zyl, Senior Science & Innovation Manager, Nutricia Early Life Nutrition

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INSPIRATION COLUMN

Jack Shakespeare Head of ukactive Kids

Why our kids need a 60-a-day habit While most parents know the ‘5-a-day’ fruit and veg dietary recommendation, there is far less awareness around children’s physical activity needs.

“If we took the least fit child from a school class tested 20 years ago, they would be one of the five fittest children in a class today.” says Jack Shakespeare, Head of not-for-profit ukactive Kids. “The Chief Medical Officer’s guidance on physical activity for children is not as widely known as it should be: kids from five to 18 need 60 minutes of exercise a day. That doesn’t mean standing up to get the remote control, but moderate to vigorous exercise that leaves you at least slightly out of breath. Children can get it from just running around and playing games, it doesn’t have to be a formal sport.” As well as impairing simple enjoyment of life, a sedentary lifestyle makes a child vulnerable to diseases such as type 2 diabetes which can lead to serious, long-term complications. “The problem is that kids aren’t learning the basics at an early age,” says Shakespeare. “We need to get them confident, learning the right movements and skills, putting them in situations where they have to find an active solution rather than just looking things up online.” It’s essential for all families to be aware: recent research shows that children lose 80 per cent of their fitness over the school holidays, with those in lower socio-economic groups disproportionately affected. Shakespeare encourages parents to keep their kids active at weekends and in the holidays, and to ensure that both girls and boys are as physically ‘literate’ as possible. “Making use of open sports and leisure facilities and local activity groups can help. We all have a responsibility to challenge barriers stopping certain groups from accessing healthy activities.” Read more on healthawareness.co.uk

We want happy mums and babies Deciding how to feed your baby isn’t always easy: expert, Sarah Fox, talks us through the options and the kind of support that’s available By Tree Elven

Most mothers want to – at least – give breastfeeding a try in the first hours and days after birth, says Sarah Fox, Professional policy advisor at the Royal College of Midwives (RCM), “The most important reason to breastfeed,” she explains, “is that it’s the right food for your baby: breast milk is very cleverly designed by the body to reflect exactly what your baby needs. It’s the gentlest and best for his/ her digestion; there’s evidence that gut flora has been shown to differ depending on how the baby is fed. Artificial milks are very good but they are not going to have that level of individual perfection.” Breastfeeding is also an especially bonding experience, and one that many women will look back on with great fondness as a unique time in their lives, says Fox, stressing that this does not mean that women who don’t breastfeed won’t bond with their baby. “When breastfeeding works, there’s an incredible closeness: the baby has eye contact, can feel the mother’s body warmth and her heart-beat, and so has less anxiety. A happy baby will develop well.” The World Health Organization (WHO) recommends breastfeeding for the first six months of a baby’s life. Fox

Sarah Fox Professional policy advisor, Royal College of Midwives

says that this is the ideal but the RCM simply supports whatever duration makes mothers and infants happiest. “We don’t want mums to feel pressure in any way.” Other benefits of breastfeeding are convenience, lower cost, and the reduction of risk of maternal cancers later in life. “It can also help firm tummy muscles and shed some of the pregnancy pounds – producing milk burns calories”.

Choices But it’s not for everyone: some women prefer not to be the baby’s sole nurturer, or choose formula for other reasons. Breastfeeding is a major commitment, and uncomfortable conditions like engorgement of the breasts or mastitis may cause breastfeeding mothers to change their choice.

“Feeding needs to be established successfully,” says Fox, “This is where the support and advice of an experienced and knowledgeable person, such as a midwife, can help.” NICE guidelines specify that all maternity units should support mums with the right information; that includes making up a bottle of formula milk safely and properly. All women should have an expectation of information from the midwife after the birth so that feeding is successful regardless of how you choose to feed them. We want happy mums and babies. “The midwife will be monitoring progress whatever the feeding choice, and will take appropriate action if there is any concern that the baby isn’t thriving.” And if you do have any doubts, says Fox, “remember that there are people there to help you. We’ve had women tell us they don’t want to bother busy units, especially if it’s late at night. Don’t hesitate to use those services. Seek support when you need to. “The RCM supports whatever is right for the individual mother and baby. We’re listening to mums and working hard to get more investment to ensure the very highest standards of postnatal care – which is what women deserve.”

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Living for today Lily is a happy-golucky eight year old, but behind her smiles, her parents, Simon and Samantha, are aware that the future will involve almost unimaginable heartbreak. Lily was diagnosed with the rare and tragically, fatal disease, BPAN (beta-propeller protein-associated neurodegeneration) when she was just five.

Children with BPAN experience a period of developmental delay and, often, epilepsy in early childhood. Sadly, they deteriorate significantly over time, developing abnormal muscle tone, features resembling

Parkinson’s disease and symptoms of dementia. Little is known about the disease’s underlying cause and there are no drugs that can improve or cure BPAN. Current medical approaches focus only on symptom alleviation. Lily uses a wheelchair now, wakes four or five times a night due to sleep problems, and her dribbling and seizures have to be controlled by drugs. Children’s charity, Action Medical Research, wants to work towards a cure. Along with the British Paediatric Neurology Association, they are funding a potentially groundbreaking research project that is investigating ways in which BPAN brain cells

malfunction and looking for drugs that help correct the cells’ behaviour. Lily is taking part in the research, led by Dr Apostolos Papandreou, who was awarded a prestigious Research Training Fellowship by Action Medical Research. Lily’s mum and dad are keen advocates of the importance of research as Simon explains: “Medical research like this for children is just absolutely vital – you have to start somewhere. We know we won’t get a cure for Lily, but other children might benefit. Lily has so much to give, much more than she will ever realise. We are so proud of her.” Action Medical Research has been funding medical breakthroughs for 65 years

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and has helped to beat polio in the UK, fight meningitis, prevent stillbirths and develop ultrasound scanning in pregnancy. Today we fund a broad range of cutting-edge medical research most likely to deliver real benefit in pregnancy and to babies, children and young people.

Find out more action.org.uk/fund

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PATIENT STORY

Spotlight on rare childhood conditions

Alfie Jeary

CDH UK

Calcium is not just about teeth and bones, it is essential to life. But when your baby has a rare calcium condition, treatment is not always immediate or straightforward.

Throughout June, CDH UK raises awareness of the often fatal birth anomaly, Congenital Diaphragmatic Hernia. June 28th is CDH Awareness Day.

For Alfie Jeary, seizures began at three weeks old but diagnosis took an agonisingly long time. He was transferred to three hospitals before his condition wasidentified and stabilised. Blood tests revealed low calcium. Alfie’s mum, Jennifer Lofthouse, says, ‘I remember thinking, ‘Oh it’s only low calcium,’ and we were given tablets and told he would live a normal life on this medication. But weekly blood tests, calcium injections and infusions couldn’t prevent his calcium from persistently falling too low and Alfie would have frequent seizures. Eventually, he was diagnosed with a rare calcium–sensing receptor mutation in his parathyroid glands, meaning his body can’t regulate calcium levels. Today Alfie has a pump, which injects parathyroid hormone when needed. Although he still gets very ill if he catches a bug, life has changed for the better for Alfie and his family – especially now he has a waterproof pump and can go swimming!

Throughout June, CDH UK raises awareness of the often fatal birth anomaly, Congenital Diaphragmatic Hernia. June 28th is CDH Awareness Day. Beverley Power, trustee and secretary of the charity, explains why this is so important: CDH is complex and challenging. Due to the low numbers of live births (approximately 1:2500) the experience of treating patients is, in turn, low. This often results in a poor understanding of the needs of patients who survive the condition. It can also result in a lack of research into CDH and therefore, slower development into CDH management or treatments. CDH UK has been highly instrumental in improving outcomes for patients and their families, but raising awareness is key in helping CDH UK to help improve patient experiences. Public awareness of the charity helps to raise much needed funds, which can support families and research projects. This helps medical professionals access more patient experiences and information, which can help to improve services and better patient experiences. We hope you will help by remembering 28th June, CDH awareness day

For more information and support please visit www.hypopara.org.uk

Heidi and Jasmine I remember the first time I heard of Neonatal Alloimmune Thrombocytopenia (NAIT) – it was 7th November 2005 when my daughter was two days old.

I’d experienced a low risk pregnancy and a birth with no complications and so was in shock when, the day after her birth, the health care assistant discovered bruising around her nappy area and swiftly wheeled her off to special care to undergo bloods tests - they found her platelet count to be 14(x109). Unsure of what was causing her platelet count to be so low, Jasmine was subjected to numerous blood tests and investigations. NAIT, which was not very well documented in 2005, was confirmed. Jasmine’s birth and NAIT opened my eyes to the amazing job that healthcare professionals undertake on a day to day basis. Inspired by this, in 2013, I commenced my training as a midwife. I’ve been qualified for a year now and am committed, with the dedicated help of NAIT babies.org, to raise awareness of this blood disorder to my fellow colleagues and other families.

For further information visit our website www.cdhuk.org.uk

Emma and Eva Around 1,500 children a year in the UK alone are diagnosed with some form of Developmental Dysplasia of the Hip (DDH). Early detection could mean the difference between correction through simple outpatient treatments, or hospital stays, operations, and potentially long-term problems with the hip.

My daughter, Eva, was only two days old when she was diagnosed with hip dysplasia. Despite this, I felt relief knowing (from personal experience), the importance of early detection. I was 14 months old when my DDH was diagnosed. My first operation left me in a full body ‘froggy’ plaster for over a year. My last surgery was a pelvic osteotomy at the age of seven, followed by six months in a body cast. I missed months of school. Now aged 36 and a mother of two, I continue to be affected and I am likely to undergo a hip replacement in the very near future. My message is that early diagnosis is essential to reducing the risks of a treatable condition becoming something far more serious, with life-long consequences.

Calcium-Sensing Receptor (CaSR) Calcium is essential to life and calcium levels need to be tightly regulated in the body within a very narrow range. The calcium-sensing receptor (CaSR) in the parathyroid glands plays a crucial role in this by sensing when levels are low or high and stimulating or suppressing the production of parathyroid hormone (PTH). Mutations in the CaSR lead to hypocalcaemic disorders such as ADH1, and hypercalcaemic disorders such as FHH1. CaSR mutations cause rare endocrine disorders affecting newborns, children & adults. Hypopara UK is a national patient organisation working since 2005 to provide free support and information to families affected by parathyroid conditions, raise medical awareness and advance research.

Research into CaSR signalling is ongoing. If you’d like to donate please go to www.mydonate.bt.com/charities/hypoparauk To learn more please visit our website.

Website:

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facebook.com/hypopara.uk Twitter:

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on’t take walking for granted We d With almost 1,500 children born each year in the UK with hip dysplasia, nearly 1,000 with clubfoot / talipes and over 150 with a lower limb deficiency, Steps Charity gives essential support and information to individuals and families including: ●

National telephone helpline ● Family contacts service ● Professionals database ● Family events ● Publications ● Active online Closed Facebook Group ● Regional Network

Steps Charity Helpline

01925 750 271 (open weekdays)

Tell me more

info@steps-charity.org.uk Website

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st ep s

We don’t take walking for granted

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INSPIRATION EXPERT TIPS

Top 3 interventions for preventing tooth decay

Reduce the consumption of foods and drinks that contain sugars

Brush teeth twice daily with fluoride toothpaste (1350-1500ppm), last thing at night and at least on one other occasion. After brushing, spit don’t rinse

Take your child to the dentist when the first tooth erupts, at about 6 months and then on a regular basis

Under 3s should use a smear of toothpaste

3 to 6 year olds should use a pea size amount

Parents/carers should brush or supervise tooth brushing until their child is at least 7 SOURCE: PUBLIC HEALTH ENGLAND

The state of children’s oral health Every year, tens of thousands of children will be admitted to hospitals in this country to have decayed teeth removed under general anaesthesia.

In fact, dental decay remains the leading cause for hospital admissions in five to nine year old children in England. This is at significant cost to the family in terms of pain, infection, psychological impact and sleep disturbance experienced by the child, but also impacts on parents who may need time off to provide care. The cost to the NHS is also significant with £50.5 million spent extracting decayed teeth in children and young people aged 0 to 19 years in 2015/16 [1]. Ironically, given all of the above, the general picture is one of improving oral health. The latest National surveys [2] show us that nearly a third of five year olds and nearly half of eight year olds have decayed teeth, which is actually a significant improvement since the 1970s, when around 70 per cent of children started school with experience of dental decay. This is largely attributed to the widespread use of fluoride toothpaste. Oral health is a marker of wider health and social care issues, including poor nutrition and obesity. Interventions that reduce the number of sugar intakes have the potential to improve dental health and reduce obesity. Dental decay remains a significant public health burden in terms of prevalence, impact and cost of treatment; so why is there no public outcry? When will we, as a society, start to take oral health seriously? Children’s oral health is everybody’s

2) Brush twice per day, every day

Claire Stevens Vice President, British Society of Paediatric Dentistry

business but societal change will require partnership working between all healthcare professionals, parents, early years educators and government.

So what can parents do? 1) Get regular dental checks Children should be brought to the dentist as soon as their first teeth come through and certainly by their first birthday. This message is central to the British Society of Paediatric Dentistry’s [3] Dental Check by One campaign and is key to ensuring that preventive messages are delivered and that the family are supported with weaning. This visit is not just about looking in a child’s mouth – it should be the start of a positive, lifelong relationship with dentistry. Remember NHS dentistry is free for children.

Children should brush their teeth twice a day – last thing at night and at one other time of day, and spit, not rinse their toothpaste after brushing. Children up to the age of three should use a flat smear of toothpaste containing at least 1,350 ppm (parts per million) of fluoride. After the age of three, a small pea-sized amount can be used.

3) Keep sweet treats to mealtimes Sweet foods and drinks should be kept to mealtimes and avoided in the golden hour before bed.

4) Stop the bottle Bottle use should not continue past a baby’s first birthday and nothing aside from milk or water should ever be put in a baby’s bottle. An open top, or free flow cup, can be introduced at six months. There is lots more information in BSPD’s Practical Guide to Children’s Teeth [4]. 1. https://www.gov.uk/government/ publications/health-matters-child-dentalhealth/health-matters-child-dental-health 2. content.digital.nhs.uk/catalogue/ PUB17137 3. www.bspd.co.uk 4. http://bspd.co.uk/Portals/0/A%20 practical%20guide%20to%20 children’s%20teeth%20Nov%202016.pdf