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Children’s Healthcare
“All children will benefit equally, and we can continue to protect and nurture our nation’s children and young people.”
“A powerful platform empowers parents with expert advice on child health.”
Ms Eilísh Hardiman, Chief Executive, Children’s Health Ireland
National Clinical Lead in Child Health Public Health, HSE
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Dr Abigail Collins,
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Far-reaching benefits in digital traceability for healthcare providers Ensuring digital traceability allows health providers to boost sustainability and safety for patients and professionals.
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iobhain Duggan, Director of Innovation and Healthcare at GS1 Ireland, explains, “Digital traceability provides data to inform clinical decisions. It gives information on where, when and what has happened. The sector sees track and trace as logical, but implementing it is not always straightforward.” A paper-based process to track critical items can create “gaps and errors in data,” she says. “Simply moving to an electronic system does not mean you will have great data. That may still rely on people to type in the information. Tracking and scanning are more efficient and reduce the risk of error.” Gaining patient trust The challenge lies in ensuring traceability practice that meets established standards. “Codes are not always unique, nor do they always meet international regulatory standards,” says Duggan. “But when done properly, traceability will make processes more efficient and safer. There is a full audit trail — it provides more information to help professionals make their decisions and increases patient confidence.” Traceability in practice Traceability is already in place at Children’s Health Ireland (CHI) at Temple Street, where patient feeds are tracked through a standardsbased traceability database. This utilises barcode labelling and a scanning system to capture critical data about each product including expiry date, batch number, location within the hospital, the staff member that delivered it and the patient who received it. Track and trace also helped the HSE’s National Immunisation
Office receive, administer, track and report Covid-19 vaccinations across more than 40 centralised vaccination clinics (CVCs). The TrackVax software, developed by GS1 Ireland was designed with the HSE teams to enable the tracking and reporting of each dose right to the point of vaccination. Meanwhile, a recent demonstration of the tracking of plant room equipment for Facility Management at CHI Urgent Care Centre, Tallaght University Hospital, showed how globally unique GS1 identifiers — for assets, people and locations — aided the management and maintenance of critical equipment for air handling and the supply of medical gases.
There is a full audit trail — it provides more information to help professionals make their decisions and increases patient confidence. Sustainability benefits By waving goodbye to paper-based processes, traceable practices can also be sustainable, explains CEO Mike Byrne. “True sustainability is impossible without information. Traceability allows information to be gathered very easily and efficiently. These efficiencies lead to better waste management and more reliable information to track sustainability measures. You can’t achieve sustainability without proper measurements.” WRITTEN BY Meredith Jones Russell
Siobhain Duggan Director of Innovation and Healthcare, GS1 Ireland
Mike Byrne Chief Executive Officer, GS1 Ireland
Find out more at gs1ie.org
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Advancing acute paediatrics in Ireland for the future of children and young people Children and young people — 18 years and under — comprise one-quarter of Ireland’s population. These young people are a valued and positive asset for Ireland’s future. Ms Eilísh Hardiman Chief Executive, Children’s Health Ireland
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elson Mandela once said: “There can be no keener revelation of a society’s soul than the way in which it treats its children.” A critical review of Ireland in this regard is varied.
Paediatrics in Ireland When looking at acute paediatric services in our hospitals, we have many excellent services, while others require continued development, especially when it comes to providing timely access. Reducing the length of time that children are waiting for review and treatment is currently the highest priority for Children’s Health Ireland. The ambitious transformation of healthcare requires long-term planning and policy change. The health policy and plan for acute paediatrics are based on the 2016 National Model of Care for Paediatric Healthcare Services. It is in keeping with Sláintecare and will be fully in place within the next decade. Core principles of care This model of care stipulates having an integrated network of paediatric services based on two core principles. The first is that children and young people should be treated as close to their homes as clinically appropriate. The second is that all national and highly specialist acute services are consolidated in one children’s hospital co-located with a large academic adult hospital. The development of acute paediatric services in regional hospitals is an integral part of this model of care. An integrated network of services across hospitals is already in place for cancer services and is now being rolled out for Ireland’s trauma services. The same approach is required for acute paediatrics across healthcare services, professional education and paediatric research and innovation. Facilities for children Children’s Health Ireland currently provides paediatric services in Crumlin, Temple Street, Tallaght and Blanchardstown. The highest concentration of children is in the eastern region where the rollout of the new model of care for acute paediatrics is well-advanced. New facilities for outpatient and urgent/emergency care in Blanchardstown and Tallaght provide local and convenient services northwest and southwest of Dublin. Our new children’s hospital building is now over 70% complete and will provide all national and some all-island services for our sickest children. We welcome continued investments in paediatric services, through our new hospital project and in our integrated network of paediatric services. By doing this, all children will benefit equally, and we can continue to protect and nurture our nation’s children and young people.
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The growing importance of healthy eating for children Healthy eating and being physically active are particularly important for children. This is because their nutrition and lifestyle influence their wellbeing, growth and development.
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aying down healthy food habits in childhood influences their relationship with food for life. Food provides energy so that they can happily carry out all the activities they enjoy. A huge body of scientific evidence has looked at the impact of breakfast and children’s concentration at school. Childhood is a time to learn a variety of flavours and foods to ensure that main food groups are enjoyed, so variety is key.
been developed as a fuss-free easy dinner range that our customers can trust to be nutritionally balanced and delicious.” Encouraging a balanced diet Childhood is an important time for growth and physical and cognitive development. Providing a nutritious diet that children will enjoy is crucial for learning and playing. To help parents choose a healthier diet for their children (4–10 years), we’ve focused on a range of children’s food that is both delicious and meets children’s nutrient requirements. Every one of the meals in the range has at least one of your five-a-day and carries our Eat Well health stamp of approval. Our Eat Well flower makes it easier to be healthy — every product has a health benefit and supports a balanced diet. Parents want to give their children food that is good for them. They want to know what’s in the food they are offering. Therefore, there are no artificial colours, flavours or sweeteners; no added preservatives (excluding deli meats); and there are no salt substitutes and no added salt, wherever possible.
Laura Street Senior Nutritionist, M&S
Eddie Murphy Trading Director, M&S Ireland
Laura’s top five tips Whatever age your child is, role modelling has a big impact on eating habits. While many of us are at home, we have a unique chance to sit and eat together for at least one meal a day.
What is Eat Well? The Eat Well health seal of approval makes it easier to be healthy. Every Eat Well product has a health benefit and supports a balanced diet. The Eat Well flower is only given to products meeting evidence-based nutritional criteria — developed by our nutritionists, in line with healthy eating guidelines. So, whether you want to cook a meal from scratch, grab a snack on the go or find something to quench your thirst — just follow the Eat Well flower to make a healthy and delicious choice. You can also find delicious lunchbox ideas at marksandspencer.ie
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Developing a taste for healthy food Eddie Murphy, Trading Director at Marks & Spencer, Ireland, spoke about the M&S ‘Taste Buds’ food range, saying: “We know how important good food is for everyone. But healthy, nutritious food is particularly important for child development. We take that very seriously in our role as a retailer for families. That’s why we’ve collaborated with children’s nutrition experts to develop our meal range for children aged 4–10, to ensure that each product provides the key nutritional benefits essential to children’s development. Additionally, 5 cents from every Taste Buds pack sold in Ireland is donated to the Children’s Health Foundation, Crumlin. “As parents, we’re often so busy that it can be difficult to find the time to provide nutritious food day after day, so the Taste Buds range has
• Use the opportunity to display the kind of eating behaviours you’d like to see in your child. Whether it’s leaving devices elsewhere while eating or chomping up all our greens, it’s interesting to see how — once we start doing things ourselves — they soon copy. • Get kids involved — if they help prepare meals, they’ll take pride in the food and will be more likely to tuck in. • Try making fruit and veggies the topic of your dinnertime conversation. Discuss which you’ve eaten that day and how you plan to fit in your five-a-day tomorrow. • Most schools talk about the environment and food waste; strike up a conversation to see what knowledge your child has and if they have any creative recipe ideas to use up leftovers. • Get creative! The presentation has a big impact, so make food as appealing and varied as you can — kids will enjoy helping, too.
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A powerful platform empowers parents with expert advice on child health Approximately 60,000* babies are born in the State every year and, as children (under 18 years) account for approximately 25% of the Irish population (1.19m projected for 2022), Ireland has one of the youngest populations in the EU.
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he HSE National Healthy Childhood Programme has a key role in supporting families as they progress from pregnancy, through to baby and early years.
WRITTEN BY Dr Abigail Collins National Clinical Lead in Child Health Public Health, HSE
from a variety of locations across Ireland and different situations, including parents transitioning from homelessness, asylum seekers, teenage and young parents and parents from the Traveller community. Parent-led expert resources In response to parents’ feedback, The HSE’s NHCP provides a the resources were designed to series of core infant and early provide parents with the right health childhood checks, complemented information and support them to by its mychild.ie website and books make informed choices in relation to developed by experts their children’s health and informed by and their own. Website parents’ needs. traffic, to date in 2022, The books and exceeds 4 million hits. Information provided website are developed Looking to the and designed to be throughout the resources future, Dr Abigail a one-stop-shop Collins, National is based on research where parents and Clinical Lead in Child evidence, clinical best parents-to-be can Health Public Health practice and the practice for the HSE explains: get accurate and trusted information “One of the key wisdom of over 80 on pregnancy through objectives of subject matter experts. the first five years mychild.ie is of their child’s life. to increase the Information provided throughout availability and accessibility of the resources is based on research relevant trusted information for evidence, clinical best practice parents. Every child is unique and and the practice wisdom of over 80 every family setting is different. subject matter experts. While parents know their child best, we hope that research and Diverse backgrounds practitioner experience can be During the development of invaluable sources of information mychild.ie, over 4,000 parents when needed.” took part in a research and listening exercise. These parents *Average number of births registered with included those at different stages CSO over a five-year period 2017–2021 (first time pregnant, second inclusive. child, mothers, fathers) and
Visit mychild.ie for your guide to pregnancy, baby and toddler health. hse_mychild #hsemychild
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facebook.com/HSEmychild.ie/
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Difficulties children are facing to manage a rare, debilitating skin disease Epidermolysis Bullosa (EB) is one of about 7,000 rare diseases. EB is a rare and distressing genetic skin disorder affecting young children and adults, and there is no cure.
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hildren born with EB are often called ‘Butterfly Children’ because their skin seems as fragile as a butterfly wing. In Ireland, there are about 300 patients, of whom about 90 have the two more severe forms of the disease.
Dr Joe Wiley Founder and CEO, Amryt Pharma
Jimmy Fearon CEO, Debra Ireland
WRITTEN BY Mark Nicholls
Unseen effects The condition causes the skin to become fragile and tear or blister at the slightest touch. Patients with severe forms of EB suffer from chronic blistering, scarring of the skin, mutilating of the hands and feet, joint contractures, strictures of the oesophagus and mucous membranes and are at high risk of developing infections and aggressive squamous cell carcinomas, which can result in a risk of premature death. Patient Care Children often go through painful bandage changes which can take up to three hours every other day. Jimmy Fearon, the CEO of DEBRA Ireland, the charity that supports children and families in Ireland affected by EB, says: “The impact of EB on a family is devastating. The trauma is both physical and psychological.” Founder and Chief Executive of Irish biotech firm Amryt Pharma, Dr Joe Wiley says: “EB patients can require opiates to get through bandage changes, so what we want to do is to assist in healing EB wounds faster which can help reduce wound burden as much as possible.”
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Putting a halt to the flu interrupting our everyday life
C Stephen McMahon Chairman, Irish Patients’ Association
Flu season kicks off Everyday life is disrupted when children are sick for long periods, out of creche and school, along with hobbies and sports — this can further impact parents in terms of work and routine. In short, if
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Find out more at debraireland.org amrytpharma.com
conditions are most at risk of severe flu complications. Children also carry the flu virus in their system longer than adults do. Therefore, it can spread easily to other children — like those in day care centres and schools — and to older and vulnerable people around them.
This autumn marks the start of a significant flu season with an upsurge in both flu and Covid-19 expected to put the health service under enormous pressure. ountries in the southern hemisphere like Australia have experienced a record number of cases, signalling a post-pandemic flu revival. Symptoms to look out for include a high temperature, muscle pains, headaches and extreme tiredness (fatigue).
DEBRA Ireland is a family and patient-led organisation. They provide practical support and grants, advocate on behalf of families and invest in research.
enough children are vaccinated, fewer children and adults will be at risk from flu. Complications from flu Children are twice as likely as adults to get the flu. While most children who get the flu will have mild symptoms, some can develop complications such as pneumonia or bronchitis and may need to go to the hospital. Children, especially younger children, are also more likely than adults to suffer severe flu complications. Flu can cause serious illness in children, and children with chronic health
Don’t be left on the bench The Irish Patients’ Association (IPA) has launched a new campaign to highlight the importance of the children’s flu vaccine this winter. The ‘Flunited’ campaign is encouraging parents and guardians of children aged 2–17 to join the Flunited team and make a collective effort to give flu the red card! Vaccination is key when it comes to protecting others, like siblings, parents, grandparents and those vulnerable from infections. The vaccine will protect children against flu. The campaign will be officially launched by the IPA in October with a selection of high-profile ambassadors and activities.
The vaccine is available for free at participating pharmacies nationwide and GP practices. Learn more at irishpatients.ie/ The ‘Flunited’ flu awareness campaign has been sponsored on an unrestricted basis by AstraZeneca.
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Dr Louise Kyne Dean of the Faculty of Paediatrics, Royal College of Physicians of Ireland
How to tackle the challenges for patients, parents and paediatricians
Investment in early childhood is proven to be highly cost-effective. Knowing the challenges will help focus resources and treatment initiatives.
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mong the greatest challenges affecting children’s health in Ireland today are poverty and unequal access to care, further exacerbated by significant increases in the cost of living.
Directive-compliant is of paramount importance.
How to address the challenges There are signs of positive change to advance paediatric services in Ireland. The Lynn clinic at Children’s Limited access to healthcare Health Ireland provides Paediatric There has been a significant increase Inclusion Health (PIH) care to in children seeking asylum in Ireland children experiencing social compared to 2021. Mental health adversity. issues have increased since Covid-19, The Irish Paediatric Acute Transfer and services are overstretched. Service (IPATS) is also making a Anxiety, eating disorders and difference to children, their families functional disorders are all on the and paediatricians. Established in increase and waiting 2014 as part of the lists are challenging. National Ambulance The childhood obesity Service, IPATS surveillance initiative brings the Paediatric (COSI) reports that Care Mental health issues Intensive one in five Irish school Unit level of care to children are either peripheral hospitals. have increased overweight or obese. Accommodating since Covid-19, They also suffer from more children and services are associated physical In Ireland, and psychosocial approximately 1,500 overstretched. challenges. children per year will require critical Paediatrician workforce issues care. Around 450–500 of them will Recruiting multidisciplinary teams present to paediatric units outside of has been challenging, and access to the two main paediatric hospitals. In vital care for children with complex 2021, IPATS saw a 160% increase in care or mental health needs in transports as paediatric respiratory hospital and community settings is a illnesses rebounded post-lockdown. growing concern. We must continue to build It is becoming more difficult to on initiatives to guide future recruit and retain paediatric trainees. developments to address the Developing the local and regional challenges facing our nation’s paediatric departments so that children and their families. paediatric trainees can learn within the planned hub and spoke model Read more at healthnews.ie for the full article of the New Children’s Hospital and being European Working Time
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How every child is at risk of tooth decay Children are at risk of tooth decay as soon as their first tooth appears! Tooth decay is diet-related and is the most common chronic childhood disease. However, it is preventable.
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hildren with tooth decay are in the morning—for about two to at risk of pain, infection, and three minutes. Encourage and teach tooth loss. It may affect their them to spit out the toothpaste at nutrition, growth, and daily the end of brushing without rinsing life or cause higher risk of decay in afterwards. their adult teeth. Brushing their teeth is important Good habits help prevent tooth decay for oral health, but a balanced/low Children are not born with a sweet sugar diet is equally important. This tooth. Introduce healthy eating is because tooth decay happens habits including lots of fruit when sugar in a child’s mouth (from and vegetables. Offering them consuming food and drinks) is sweet drinks or food or dipping a turned into acid by bacteria in the soother in anything sugary is not dental plaque. This acid can damage recommended. the tooth enamel, Bacteria that cause causing a hole or tooth decay can be cavity. Plaque is a transferred from an colourless, sticky adult to an infant, film that builds up so it is best not to Children are not born with on the teeth share toothbrushes, a sweet tooth. Introduce every day, and is spoons, and cups removed by brushing healthy eating habits or lick soothers. properly. Sugary food and including lots of fruit drinks between and vegetables. Practicing proper meals increase the oral hygiene chance of tooth Introducing an oral health routine decay. Water or milk are the best if to a child before their teeth appear the child is thirsty. is good practice; by cleaning their Be aware of medicines and gums using a clean, damp cloth their sugar content. Always ask after feeding. When the first tooth for sugar-free medication from appears, gently brush with water and your pharmacist. a soft brush twice daily and avoid Visit your dentist by baby’s first toothpaste unless recommended by birthday for advice on caring for a dentist. Use a pea-sized amount their teeth. of fluoride toothpaste from age two, Finally, don’t forget that you can as this helps to make teeth stronger. set a good example. Be a role model Supervise their toothbrushing until by brushing your own teeth twice a around seven years of age. Brush day, flossing, and limiting your twice daily—at night before bed and sugar intake.
Etain Kett Public Affairs and Communications Manager, Dental Health Foundation Ireland
You can find more helpful tips for you and your child at dentalhealth.ie
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Digital twins: tackling neuroblastoma with computational models
Raising more awareness on the impact of childhood hearing loss
Neuroblastoma represents only 6% of childhood cancers, yet accounts for 15% of cancer deaths in children. Some forms respond to treatment, while others are difficult to treat as they are resistant to anti-cancer drugs.
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urrent neuroblastoma treatments are often genotoxic, damaging the genome and causing severe side effects that can burden survivors for decades. How can we overcome drug resistance and improve treatments so there are fewer side effects?
Building digital twins of human patients is a long-term endeavour that requires teamwork and cuttingedge technologies such as genome sequencing, gene expression and protein expression profiling. We first construct molecular portraits of each patient. We then match these portraits with clinical features and encode them as Virtual representation algorithms which allow us to run A team of clinicians, computer the computer simulations. The scientists and biologists at first digital twin model produced Children’s Health Ireland at Crumlin by our researchers (Fey et al., 2015) and UCD’s Systems Biology Ireland could identify a group of high-risk are trying a new approach. Funded neuroblastoma patients for whom by initiatives such as Precision we did not have reliable markers; Oncology Ireland and they could and the Children’s do this on a fully Health Foundation, personalised basis they are developing predicting the digital twins of exact risk of disease Digital twin models have neuroblastoma progression for each been successfully used patients. patient. by engineers for decades These are virtual models that allow Enhancing treatment to design complicated the disease to be We are now machinery, such as cars simulated on a expanding these and spacecraft. computer so that digital twins to diagnosis and predict the response treatment can be to chemotherapy for optimised on the model first before individual patients. We are testing moving to the real patient. This these models with cultured cancer makes the diagnosis more precise, cells in the laboratory and hope and treatment can be tailored to make them available to assist to individual patients ensuring doctors with treatment decisions that each patient gets the optimal within the next five years. treatment for their condition. The team is also using digital twins to discover entirely new drugs Personalised technology and drug targets that may replace Digital twin models have been genotoxic drugs altogether, thereby successfully used by engineers reducing long-term side effects. for decades to design complicated As developing a new drug takes machinery, such as cars and around 15 years, this aim lies far in spacecraft. However, the complexity the future. However, the future has of the human body dwarfs the already started. complexity of even the most sophisticated machines.
Prof Cormac Owens Consultant Paediatric Oncologist, Children’s Health Ireland, Crumlin
Paid for by Systems Biology Ireland
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Prof Walter Kolch Director of Systems Biology Ireland, University College Dublin
For more information, visit ucd.ie/sbi/ and childrenshealthireland.ie
The newborn hearing screening program in Ireland has screened 522,327 babies from 2011 to 2020 and has identified a prevalence of hearing loss in Ireland as 1.66 in 1,000 births. Aileen Plunkett Clinical Audiologist MSc Audiology MISHAA, ISA
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arly identification and intervention of childhood hearing loss improve the long-term outcomes for children. We know that ‘mild’ hearing loss is not identified by the newborn screen. There is also late-onset hearing loss, acquired hearing loss and temporary hearing loss that occur in childhood. It is suspected that the incidence of childhood hearing loss doubles by the age of nine. Affecting everyday abilities Mr Tony O’Connor, ENT Consultant at Crescent ENT & Audiology, Galway, reminds us that “The most common cause of temporary childhood hearing loss is otitis media with effusion (OME, also known as ‘glue ear’).” “Although typically temporary, mild to moderate hearing impairment related to OME will have occurred in up to 80% of children by the time they are eight years of age. In cases of persistent OME, the insertion of ear grommets — with or without adenoidectomy — provides immediate restoration of normal hearing levels in these children.” The burden of untreated and unidentified hearing loss can present in a child’s speech and language and communication skills, in their academic ability, behaviour issues and social and emotional wellbeing.
It is suspected that the incidence of childhood hearing loss doubles by the age of nine. Testing a child’s hearing Assessing a child’s hearing can be challenging. In addition to our standard audiometry at Hearing Solutions, visual reinforcement audiometry (VRA) allows us to assess hearing in infants and toddlers. Fortunately, advances in technologies mean we can consider objective hearing tests for children who cannot reliably respond on their own during a behavioural hearing test. Such tests that we perform include otoacoustic emissions (OAE), auditory brainstem response (ABR), auditory steady state responses (ASSR) and cortical evoked potentials audiometry (CERA).
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Mild hearing loss Possible hearing loss should be considered for a child who experiences attention, social or school performance difficulties. One-third of children with even mild hearing loss perform worse at school than children with normal hearing. For some children, the level of disability may be greater than the severity of the hearing loss. The relevance of slight to mild hearing loss should be acknowledged, particularly in cases of unilateral (one-sided) hearing loss or children with mild, high-frequency hearing loss.
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Meeting the care needs of children with type 1 diabetes at school School time for parents, children, and teachers can be a fantastic experience. But it has its challenges if a pupil was diagnosed with type 1 diabetes. See the advice on how to smoothly start the school year.
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ack to school means organising books, uniforms, school lunches, and much more. For children with diabetes, it also means managing or changing insulin regimes and thinking about blood glucose monitoring. The younger the child, the more engagement from the school staff is expected, often including Special Needs Assistants (SNA) in helping with glucose monitoring and/ or insulin delivery and being prepared for low glucose levels (hypoglycaemia). The challenge is greater if a child starts a new class or school and the teachers are not familiar with diabetes. Preparation for a learning environment Knowing that it can be an anxious time for everybody, Diabetes Ireland prepared some tips and tools to help. Our ‘Back to School’ resources prepared sections for teachers, school staff, and parents. It includes tips on how to prepare the school and what to expect, explains type 1 diabetes and diabetes management, provides information on special needs assistance, gives tips on healthy lunchtime snacks, and how to provide a child with mental health support. Staying informed and involved It is important to engage positively with the school and ensure that teachers understand the condition and how to act appropriately. To improve communication and preparation, the ‘Meeting the Care Needs of Primary School Children with Type 1 Diabetes during School Hours’ guideline was released earlier this year. The HSE document helps structure the conversation and preparations between the family, diabetes team, and school staff. It provides several tools and easy-tofollow actions to help in understanding type 1 diabetes and diabetes management and sets out clear lines of responsibility for all partners. It also helps to determine the need for non-teaching support and presents different levels of support needs for children with diabetes based on age and diabetes management skills. It is a tremendous resource for ensuring the safety of children with diabetes and their happiness in school and the classroom.
For more information visit diabetes.ie and hse.ie
Dr Kate Gajewska Clinical Manager for Advocacy and Research, Diabetes Ireland
Is your child in junior infants or first year? It’s time for their school vaccines When children are in junior infants, they are offered the 4-in-1 and MMR vaccines, and when students are in first year, they are offered HPV, Tdap and MenACWY vaccines.
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ach September, the HSE vaccinations teams offer the school vaccination programme in primary and second-level schools across the country to protect junior infants and first years against vaccine-preventable diseases. Vaccines children should get The 4-in-1 and MMR vaccines are boosters and diseases your child has already been vaccinated against when they were babies. The 4-in-1 vaccine protects against diphtheria, polio, tetanus and whooping cough (pertussis), and the MMR vaccine protects against measles, mumps and rubella. We have seen recent media from the UK and
The other thing you can do is make sure your child gets vaccinated on time to give them the best protection. New York where polio is being reported. We know polio can cause paralysis. This can be worrying for parents. The best way to prevent cases of polio in Ireland is by getting vaccinated on time. The 4-in-1 vaccine (and the 6-in-1 vaccines given to babies at two, four and six months) are a very effective way of preventing polio. The HPV vaccine protects against the HPV virus which can cause cancer in both girls and boys. Tdap vaccine protects against:
Dr Lucy Jessop Consultant in Public Health Medicine, National Immunisations Lead
• Tetanus (tetanus toxin can cause painful muscle spasms and convulsions) • Diphtheria (bacteria that can cause a sore throat and severe breathing difficulties) • Pertussis (a bacteria also known as whooping cough and causes severe coughing and vomiting) The MenACWY vaccine protects against four types of meningococcal disease which can cause meningitis (inflammation of the lining around the brain) and/or septicaemia (blood poisoning). We know meningococcal disease can affect people suddenly, and it’s always important to be vigilant for signs of meningitis and septicaemia. The other thing you can do is make sure your child gets vaccinated on time to give them the best protection. Tips to prepare your child for their vaccine On the day of vaccination, we recommend that your child: • Eats breakfast. This will help to prevent them from feeling faint, which can sometimes happen after vaccination. • Wears a loose, short-sleeved top. If your school does not allow short-sleeved tops, consider adding a short-sleeved T-shirt under your child’s shirt so they can take their arm out of their shirt. • Brings their immunisation record card/ immunisation passport to school, if they have one. More information is available from immunisation.ie
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It is important to engage positively with the school and ensure that teachers understand the condition and how to act appropriately. ~Dr Kate Gajewska, Clinical Manager for Advocacy and Research, Diabetes Ireland
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Healthcare system must be inclusive of those with rare diseases Children living with rare diseases have an enormous impact on our healthcare system.
Relatively common symptoms can hide underlying rare diseases — leading to misdiagnosis and treatment delay.
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t is estimated that 300,000 people are living with rare diseases in Ireland today. Despite this, our healthcare system is designed for those living with common chronic diseases.
Many types of rare diseases A rare disease is defined in accordance with EU rules as a condition that affects less than 1 in 2,000 people. Rare diseases that we often hear about include childhood cancers, cystic fibrosis, epilepsy, meningococcal meningitis, PKU (phenylketonuria), sickle cell anaemia and spina bifida. There are however over 6,000 different rare diseases known today, and 85% of these are considered ultra-rare, affecting less than one per million population. Genetics are the root cause of 72% of rare diseases with infections, allergies and environmental causes implicated as the causes of non-genetic rare diseases.
Vicky McGrath Chief Executive Officer, Rare Diseases Ireland
Often misdiagnosed Rare diseases are characterised by a wide range of symptoms that vary from disease to disease and from person to person with the same rare disease. Relatively common symptoms can hide underlying rare diseases — leading to misdiagnosis and treatment delay. Due to small numbers, medical expertise and knowledge can be hard to find, especially with our relatively small population. With early symptom onset, 70% of rare diseases appear first in childhood. They are typically progressive, degenerative and life-long conditions, sometimes causing premature death. A recent publication states that 4.2% of children born in Ireland (in the year 2000) were diagnosed with a rare disease before age 18. Sadly, almost 12% of these had died before reaching adulthood. In fact, among children who died under the age of 15 years, almost 60% had been previously diagnosed with a rare disease.
Children living with rare diseases have an enormous impact on our healthcare system. Impact on young people Children living with rare diseases have an enormous impact on our healthcare system. Those born in 2000 and living with rare diseases used over half of hospital bed days from birth to their 18th birthday and 60% of teenage bed days — as compared to their contemporaries not living with a rare disease — despite representing only 4.2% of those born in that year. Today, not many rare diseases have treatments. However, as awareness increases and research continues, there is increased investment in and successful development of new rare disease therapies and treatments. In 2021, the first curative gene therapy was approved for use in Ireland. There is reason for optimism.
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Introducing an oral health routine to a child before their teeth appear is good practice; by cleaning their gums using a clean, damp cloth after feeding. ~Etain Kett, Public Affairs and Communications Manager, Dental Health Foundation Ireland
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EVERY VACCINATION IS A LITTLE VICTORY In the ongoing battle against serious childhood diseases.
PP-VAC-IRL-0153 Preparation Date: September 2021
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