Happy 10th birthday Evelina London! Here’s what you’ve helped us achieve We are What makes Evelina London specıal? so Evelina London is a specia list referral centre for rare childhood disorders, for patients from across the UK and the south eas t region. It’s also a local community hospital, servin g the children of south London. Its home on the St Thomas’ Hospital site means that patients can be cared for from before they are born, through childhood and adolescence, and into adulthood. We have extensive interna tional links, Dr Sara Hanna, Medical D irector, Evelina London Many of you will remember when, in October 2005, we moved to a purpo se-built facility on the St Thomas’ Hospital site. Thanks to supporters like you we were able to create the first new children’ s hospital to be built in London for more than 100 years, and to fully equip it with cutting-edge medic al equipment. Designed with the help of the children, families and staff who would be using it, the result was a children’s hospital that doesn’t feel like a hospital. Since then, more than half a million children and young people have vis ited Evelina London for treatment. Looking forwards, we aspire to build on our role as the hub for specialist child health services across south London, the sou th east region and beyond. We work with our local community and 2 regional hospital partners, to deliver life-enhancing care for children, young adu lts, their families and carers in the best possible environment, all of the tim e. Achieving our vision repres ents a journey of ongoing development of chi ldren’s services at Evelina London, building on our many clinical achievements, investments and milestones to date. Everyone at Evelina London is extremely grateful for all the improvem ents we have been able to make thanks to our sup porters. Without people like you, we would not be able to go above and beyond what the NHS can provide and we wouldn’t be able to deliver care in wo rld-class facilities. Thank you collaborating with teams acr oss the globe through research and teaching progra mmes. And we have an amazing hos pital building, created for and by children. But what makes Evelina Lon don really special is the people. The experts, the carers, the children, the supporters. Read on for some of their sto ries, and find out more about Evelina London and how you can show your support at www.sup portevelina.org.uk A hospital that doesn’t feel like a hospital We make sure we provide the comforts needed – by all our youn g patients, but also their siblings and families Arthur’s story In 2012, three-month-old Arthur was treated at Evelina London for a coronary heart defect. Arthur was taken ill during a family holiday and flown back to the UK to be rushed straight to Evelina London for emergency surgery. He became so ill that parents Mark and Cat were told he might not survive. After two life-saving heart operations, Arthur is now a fit and healthy, high energy three-year-old. Mark and Cat were not only impressed by the care Arthur received but also how their needs as a family were met. ‘It was our daughter Ava’s third birthday on the day of Arthur’s second operation and we didn’t even see her, but the play specialist and everybody really helped to not make it scary for her and to understand what was going on,’ says Mark. ‘The hospital is built so much around patients and their families – you get that as soon as you walk in. I’ve never seen or heard of that in other hospitals.’ Did you know? Evelina London was the first children’s rent hospital to allow a pa to join their child in the ambulance. 4 How donations make a difference 17 feet – the height of our helter skelter! has worked Cathy Gill is a play specialist and rs. at Evelina London for over 25 yea s for ‘Donations provide play and activitie hospital. all the children staying in or visiting toys with s This extra funding especially help ch are for children with special needs, whi apeutic ther absolutely essential in providing ment. play and helping with their develop for s ‘We are able to provide activitie holidays as teenagers, arts and crafts in school ent to help well as essential toys and equipm prepare children for procedures.’ ity to help Staff also rely on people’s generos es – a hugely fund the annual Transplant Gam t and present successful sporting event for pas food, gifts, patients – as well as to buy party hdays and birt games and prizes for celebrating l. Christmas festivities at the hospita difference e This extra money makes a hug out in small to teenagers too. Staff take them Life London groups – to restaurants, to the Sea they can Aquarium and the London Eye, so ments.’ iron support each other in relaxed env Donate to Evelina London supportevelina.org.uk/donate 5 Fixtiniyng hearts How donations make a difference tion for treating We have an international reputa care for children heart problems in children. We ghout childhood from before they are born, throu and into adulthood Thanks to the generosity of donors, diagnosing babies with congenital heart disease has dramatically improved. Congenital heart disease is a term used for a range of defects that affect the normal workings of a heart. It affects up to nine in every 1,000 babies born in the UK. ‘In most cases if we were to do nothing, the child would not have the chance to have a normal life,’ explains Dr Owen Miller, Paediatric Cardiologist at Evelina London. ‘We do fetal screening to look for abnormalities in the unborn fetus – that is something that was pioneered here about 30 years ago. We’re world leaders in fetal diagnosis. ‘It’s a matter of rearranging the heart by corrective surgery to make it “more normal” and, if that’s not possible, to make the circulation cope better with the abnormality.’ Hannah’s stor y 440 heart operations and interventions are performed every year 220 6 e months 20-year-old Hannah was born thre called ase prematurely with a rare heart dise She has been Complicated Ebstein’s Anomaly. she was born and treated at Evelina London since ices at St Thomas’. has now moved on to adult serv uding open ‘I’ve had various procedures, incl time in and out of heart surgery and spent a lot of s it’s frustrating hospital,’ Hannah says. ‘Sometime in good hands and or annoying but I know that I’m I’m not the only one! r and shown ‘This disease has made me stronge not my condition, me life in a very different light. I am e me who I am. but my condition has definitely mad e, the people, ‘I love Evelina London – the plac there and the including the other patients I’ve met wasn’t for them I service it offers. Let’s face it, if it wouldn’t be here today!’ best friends Last year, Hannah and two of her Cissy shaved (and fellow heart patients) Katie and pounds for Evelina their heads to raise thousands of journey on London. You can follow Hannah’s t. Facebook at Hannah’s Heart Bea ‘We’re ver y proud to support Evelina London’ Dedicated supporters Surinder and Sunita Arora chose Evelina London to be co-beneficiary of their 2014 charity ball from which Evelina London received £328,000. This generous gift will help to expand the imaging department and will be vital to meet the growing demand on the service. It is essential that facilities keep pace with the new clinical practices being pioneered, as well as ensuring treatment can begin earlier so patients get better sooner. Imaging technology is a type of scanning which enables complex medical conditions such as heart defects to be diagnosed quickly and accurately. Evelina London’s imaging department has a global reputation for leading and pioneering imaging techniques in children. ‘We’re delighted that the money raised from the ball will go towards expanding Evelina London’s imaging department. We have seen first-hand what a special hospital it is and we’re very proud to support it,’ says Mr Arora. Challenge yourself for Evelina London supportevelina.org.uk/challenge 7 Supporting our patıents smallest As soon as babies ar e born at St Thomas’, they receive the very best care How donations make a difference Thanks to donors, we can buy special equipment that helps tiny babies like Maneet recover as comfortably and quickly as possible. Maneet spent the first four months of his life in an incubator, his tiny body kept snug and secure by special baby nests. Both pieces of equipment were vital to his recovery, and both are in the unit thanks to donations. It is undeniably difficult for parents when they have to leave their babies overnight, but special extras, like hand-shaped pillows called Zaky hands, can make the ordeal easier. ‘We were told to rest our hands on his head or cup his feet to give him comfort,’ remembers Randeep. ‘So when we weren’t there, the Zaky hand did it for us. Such a simple thing, but it had such a big impact. It was good for us knowing he had that kind of comfort and that he was snug with a hand over him when we were going home.’ Maneet’s stor y . It has not Maneet Virdi has just turned two his family been an easy journey for him and e rcom though, who have fought to ove many difficulties. Maneet was born three months . prematurely, weighing just 1lb 1oz l nata Neo He was transferred to the Intensive Care Unit (NICU) at St Thomas’, where the next day he suffered a significant bleed to the 900 babies are cared for in our neonatal unit every year 8 brain, the first of many lifethreatening challenges. A number of other serious complications followed, including emergency surgery to treat bowel babies. problems common in premature spent eet hpr His parents Randeep and Sac ’s bedside the next eight months at their son a baby to for e in NICU, an unusually long tim nicknamed be in the unit – so much so that staff Maneet the ‘geriatric’. r own,’ ‘They cared for him like he was thei ily; fam ond says Randeep. ‘They became sec ards him was their generosity and their care tow phenomenal.’ received in NICU, Thanks to the incredible care he t months from Maneet was discharged exactly eigh going to let him the day he was born. ‘We’re never wasn’t for the NICU forget where he’s come from; if it says Randeep. staff he wouldn’t be here today,’ Did you know ? All of our 120 inpatient ward beds have a pull-down be d next to them so that p arents can spend the nigh t with their child Have fun for Evelina London supportevelina.org.uk/fun 9 Caring for ourcritically ill children 1,225 in over 6,000 children desperately Each year Evelina London sees mber is growing year-on-year need of specialist care. This nu George’s story George was born with problems with his heart, brain and breathing, so had a lot of specialist treatment. He spent his first five months in hospital, including four in the Paediatric Intensive Care Unit (PICU), and had open heart surgery aged two weeks. ‘He was on a ventilator for a very long time and everyone thought he wouldn't make it,’ says mum Deborah. ‘It was a very emotional and challenging time watching, praying and waiting for a change, but it came and George took his first independent breaths.’ As George’s first birthday approached, Deborah decided to hold a fundraising event at the pool where George had just started baby swim classes. ‘We marched, bobbed and swam our way up and down the pool to “The Grand Old Duke of York”,’ says Deborah, who set up an online fundraising page to raise money. ‘Without the support, dedication and skills of the team, George wouldn’t be here today,’ Deborah says. ‘The staff took care of me and my family too. I felt compelled to give back.’ Did you know? The diaries we give to r parents, detailing thei babies’ condition and progress, are made possible thanks to donations. 10 children are cared for in PICU every year Funding life-saving care Staff at Southwark News and Lambeth Weekender have raised nearly £100,000 since 2013, taking part in events including swimm ing the Channel, climbing the Three Peaks, the Hellespont Swim and a Full Monty show. They als o gave out collection tins to local businesses and spread the word every week in the newspaper – lea ding to many new supporters for Evelina London . These included the previous Mayor of Southw ark, who chose the hospital as his Mayor’s Charit y for 2013-14. Managing Director Chris Mullan y has also just completed climbing Mount Kili manjaro and cycling from London to Paris to bring the appeal to within touching distance of the £100,0 00 target. The money raised will fund vital new equipm ent for the neonatal unit to treat newborn babies, as well as contributing £14,000 to the Evelina Hospita l School. ‘Everyone we speak to only has good things to say about the help they’ve receive d from Evelina London, which is often life-changing, or even life-saving,’ says Chris. ‘It was lovely to see such a cross-section of the community responding to our appeal. I hope and believe that many will car ry on working to raise money for Evelina London as the needs of the hospital are continuous.’ Thank you to all of the staff, rea ders, suppliers and members of the community wh o contributed to making the Southwark News Appeal a success. How donations make a difference Fiona Lynch has worked in PICU for 20 years. ‘There is no doubt in my mind that children get better faster with lots of extra care and love. All the staff here want to give children even better treatment, to make them feel more comfortable, more loved, and keep parents more informed about what happens throughout the day and night. ‘It’s only with extra donations from people like you that we can make Evelina London so special. For example, donations helped to make our breastfeeding room more comfortable and bought extra pumps – so more babies and mums can benefit from precious bonding time together. And we bought new machines to measure children’s blood pressures even more accurately. ‘Donations also help us buy cuddly toys, blankets and games for the children we treat. These are just some of the ways you can enable us to go above and beyond for our children and their families.’ Leave a gift in your will to Evelina London supportevelina.org.uk/legacy 11 t n e ll e c x e n a g in id v o r P e c i v r e s t n a transpl rd of largest – we perform almost a thi ’s UK the e on is it un y ne kid r Ou the UK children’s kidney transplants in Nabeel’s stor y kidneys, Born with chronically damaged rs waiting 13-year-old Nabeel spent two yea for a suitable donor. nt at Evelina Thanks to a revolutionary treatme pioneering London, Nabeel benefited from a s’ the blood, procedure that essentially ‘washe n from an meaning he could receive an orga incompatible donor – his mum. the first in The team at Evelina London was the breakthrough Europe to successfully complete to the full, operation. Nabeel is now living life mming. ‘He’s playing lots of table tennis and swi he’s gone been such a brave boy after all that have done through,’ says his mum. ‘I would when they said anything to help him. I was glad Nabeel.’ I was the perfect “mismatch” for ,’ says ‘I feel well and have lots of energy mum is the Nabeel. ‘The kidney donated by my ive.’ most important gift I could ever rece Did you know? Our children’s kidney service is the only in specialist referral unit south east England. 12 all How donations make a difference children as young Thanks to generous donations, splant have as two who have had a kidney tran pete in the been given the opportunity to com annual British Transplant Games. up by staff with The ‘Evelina VIPs’ team was set reach their full the aim of encouraging patients to continued need potential, and also to highlight the for organ donation. a number of Children and teenagers compete in swimming, squash different sports including running, on on average and archery. As it costs £900 per pers are vital for to take part in the Games, donations burden for families. removing any additional financial and staff in Spending time with other families pital provides an environment outside of the hos much-needed children, parents and families with nity to relax. support, friendship and an opportu 20 kidney transplants are performed on children every year. Creating a new space for our heart patients As we’re seeing a growing number of children who need specialist heart surgery and interventions, there is increased pressure on our inpatient facilities. Thanks to a transformational gift from the Khoo Teck Puat UK Foundation, a brand new 18-bed cardiac ward is due to be built on the sixth floor of Evelina London to improve the hospital experienc e for our most critically ill patients. Our cardiac department has an international reputation as a centre of excellence, treating child ren with the most complex heart conditions. Our patients require frequent visits to the hospital for ongoing care and monitoring which is why this state-of-the-art facility is so vital and needs to be designed around their needs. The new ward will have more space for patients and families to have privacy as well as allowing parents to sleep comfortably by their child’s beds ide. To encourage children to interact with other patie nts and our team of play specialists, there will also be a dedicated play area. There will be a family room for parents to take a break from the ward environment, an interview room for sensitive conversations with doctors and a dedicated learning space for staff. Make a regular gift to Evelina London supportevelina.org.uk/gift 13 Detecting genetic conditions How our experts are world-leaders in diag nosing and preventing deva stating illnesses Jacob’s story Jacob was just nine-days-old when he was diagnosed with a rare metabolic condition. ‘These ordinary people really are doing extraordinary jobs,’ says mum Amy. ‘They were amazing. They reassured, comforted, listened and answered our scrambled questions.’ ‘Here we were, thrown into this scary world that had been so alien only a few hours before, yet we knew then that the care we would receive was world-class.’ To give back to the hospital, Jacob’s dad Phil raised vital funds by taking part in a sponsored abseil. ‘Fast forward nearly seven years and we have a healthy, happy, superhero-loving noisy boy who is no different to any other seven-yearold,’ says Amy. ‘And this is all thanks to these wonderful people who continue to care for Jacob on a weekly basis. They truly are our heroes.’ In 2004, a nati onal trial for newborn sc reening for MCADD was la unched at Eve lina London. MCAD D is a rare gen etic condition, whic h can be life th reatening if left undetecte d. By 2009 all newborn babies across the country we re being screened for th is condition, sa ving many children ’s lives. 14 400 children took part in clinical trials last year to help develop new treatments How donations make a difference Every year 600 babies in the UK will be born with an inherited metabolic disease. Such diseases can lead to organ damage and disabilities. Evelina London has led the way in developing technology to screen babies at birth using tandem mass spectrometers. Donations have funded two of these specialist machines, allowing experts to accurately measure specific disorders in newborns. Because of this work, each baby born in the UK is screened so that treatment, if needed, can begin immediately. As well as metabolic diseases, this equipment can detect neurological, kidney, liver, heart and blood disorders. This significantly increases the chances of survival and normal childhood growth and development. With 40% of newborn baby deaths caused by genetic disorders, this machine is essential for saving lives. ‘This machine has great potential to help our younger patients enjoy longer and healthier lives,’ says Dr Grenville Fox, Consultant neonatologist at Evelina London. rld map Putting Evelina London on the wo our ideas, dreams, International businessman George Koukis has donated £1.875m to establish a new Paediatric Rheumatology Unit at Evelina London. Mr Koukis has a personal connection with the hospital, as his daughter Joanne (pictured with her father) was treated for arthritis at St Thomas’ for many years. As well as funding a consultant in paediatric rheumatology, the gift ensures that patients and their families can benefit from a physiotherapist, psychologist, clinical nurse specialist, occupational therapist and secretary in the unit, offering the best it’s the combined values of aspirations and passion that make it worthwhile. ‘Something incredible will happen here and this service is putting Evelina London on the world map. They’re doing a fantastic job.’ possible multi-disciplinary care. ‘In nine months we have achieved what would otherwise have taken five or six years,’ says Dr Nick Wilkinson, Consultant Paediatric Rheumatologist. ‘We have received hundreds of new referrals from across south London, Kent, Surrey and Sussex and provided the very latest treatments for many of these.’ Mr Koukis adds: ‘It’s not the physical assets or machinery that make an organisation or hospital, Bake for Evelina London supportevelina.org.uk/bake 15 Diagnosing s e s a e s i d difficult ildren biggest in Europe, caring for ch the is e vic ser y log uro ne ’s ren Our child spinal cord and nervous system in, bra the ing ect aff s ion dit with con Annabelle was In December 2012, four-year-old l to Evelina transferred from her local hospita eared to be London with an illness which app to treatment. meningitis, but she didn’t respond I brain scan, After extensive tests and an MR y rare form of a diagnosis came – ADEM, a ver the brain and Encephalitis, a disease in which y four in a spine are inflamed. It affects onl million people. rmaine ‘We’d never heard of it,’ mum Cha sat us down and recalls. ‘And as the doctors gently and prayed.’ explained more to us, we sobbed taken off After a few weeks, Annabelle was to walk, talk, life support, but had to learn how three months sit and even swallow again. After t home, starting in hospital, Annabelle finally wen has regular checkschool just six months later. She legs, difficulty ups and still suffers from painful Charmaine swallowing and poor eyesight. But remains positive. ,’ she says. ‘It’s going to be a very long recovery be explained ‘There are still things that cannot n told that there about her illness. But we have bee a full recovery. is an 85% chance she will make don for the ‘We are so grateful to Evelina Lon ived. We want to care and treatment Annabelle rece the staff who were give the biggest thank you to all t time waiting to there in the right place at the righ that fateful day.’ give our daughter the best care on entre We are home to the C in, for the Developing Bra g which does pioneerin research to understand brain development in newborn babies Phineas’ story In May 2010, three-week-old Phineas suddenly developed a fever and becam e lethargic. He was transferred from his local hos pital to Evelina London where doctors battled to first diagnose and then treat his condition. ‘One of the doctors told us tha t if we hadn’t taken him in to hospital, he probably would have died,’ recalls dad Michael. After numerous tests, chest X-ra ys and lumbar punctures, he was found to hav e a common but infrequently diagnosed virus called Parechovirus, which had overwhelmed Phinea s’ immune system. Michael says: ‘A team of doctors came to us following the diagnosis to let us know that he was going to pull through. We were overwhelmed with relief.’ One week later, Phineas was back home, and Michael, a professional photog rapher, was keen to find a way to thank Evelina Lon don and recognise Annabelle’s stor y Did you know? all the people who had saved Phineas’ life. He set out to photograph all the staff who had been involved in Phineas’ car e, during his period in hospital, eventually managing to make portraits of 63 of them. The resulting boo k, Phineas’ Friends, was published in 2011 with all proceeds going to Evelina London. ‘I can never forget the people who saved my son,’ Michael says. ‘And while the book will always be there for Phineas as he grows up, it also serves to remind us all of the highly ski lled and dedicated teams of clinicians, scientists and technicians that work around the clock for all the children who come through Evelina London’s doo rs.’ You can still buy the book – go to bluefilter. co.uk/phineasfriends for mo re information. 24,000 visits are made to our children’s A&E department each year Left to right: Phineas in hospital; Phineas aged 5; Nursing Assistant Gill Swann pictured in Phineas’ Friends. 16 Volunteer for Evelina London supportevelina.org.uk/volunteer 17 ng i t a e r t f story o n e d r n a d n l o i d h on L c h t u k o ic in s A hi s d n o y be The Evelina Hospital for Sick Children, founded by Baron Ferdinand de Rothschild in memory of his wife Evelina, first opened its doors in 1869, moving into Guy’s Hospital in 1976. Since our new hospital opened on the St Thomas’ site in 2005, we have continued to lead the way in child health. 2009 We establish the UK’s first Hybrid Operating Programme to treat critically ill babies born with a severe heart defect known as Hypoplastic Left Heart Syndrome, dramatically improving outcomes for this vulnerable patient group. 2011 An Evelina London patient receives the first blood group-incompatible kidney transplant. 2013 We recruit more children on to cuttingedge clinical research studies than any other hospital in London. 2014 Evelina London Newborn Imaging Centre and the Centre for the Developing Brain open in partnership with King’s College London. The Centre carries out internationally groundbreaking research for newborn babies, searching for ways to reduce brain damage in premature and term babies. The future for Evelina Londo n … In the last deca de, children’s healthcare has dramatically. T improved hanks to bette r diagnostics, pi surgical interv oneering entions and ev er-improving cl we are able to in ical care, do more for th e very sick child However, in the re n we treat. last 10 years th e clinical work at Evelina Lond we do on has increase d by over 50%. experiencing a W e are growing deman d for our servic more children ne es , with many eding our expe rtise and except We want to cont io na l skills. inue to provide care tailored to of all our youn the needs g patients and their families. T research and cl hr ou gh vital inical trials, we can improve m diagnosis, inno et ho ds of vative treatmen ts and interven aim of giving al tio ns , with the l our young pa tients hope for a bright future. Can you help u s do this ? Find out how you can show your support www.support at evelina.org.uk How t r o p to sup n o d n o L na i l e Ev Get baking Hold a bake sale at work, a pie and mash evening with friends or your very own Great British Bake Off! Take on a challenge Run, cycle, abseil, skydive or get muddy – we have places in a full line-up of events. Or choose your own event. Organise a fundraising event Shave your head, hold a collection at church, fundraise at your school or have a dress down day in the workplace. Make a donation Text EVELINA10 to 70025 to donate £10 Here’s how your support could make a difference £10could buy a child new toys to make their stay in hospital a little less daunting. £20could go towards a new resuscitation system, meaning doctors will have the most up-to-date equipment when treating their young patients. £50could help to buy new, gentle and non-invasive machines to provide respiratory support to sick babies who need help with their breathing. 18 Donate to Evelina London www.supportevelina.org.uk/donate Contact us for more information •Call 020 7848 4701 • Email [email protected] •Visit www.supportevelina.org.uk /SupportEvelina @SupportEvelina 19 We are Raise £10 for our 10th birthday Text EVELINA10 to 70025 to donate £10* Get your kids to raise £10 for Evelina London Find out how at www.supportevelina.org.uk/evelina10 *for terms and conditions, please see our website supportevelina.org.uk. Evelina London Children’s Hospital is part of Guy’s and St Thomas’ NHS Foundation Trust. Guy’s and St Thomas’ Charity, Francis House, 9 King’s Head Yard, London SE1 1NA. Registered Charity No. 1160316. Company limited by guarantee registered in England and Wales No. 9341980
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