Lifeline (Summer 2011) by Great Ormond Street Hospital Children's Charity

Summer 2011

how Caseyâ&#x20AC;&#x2122;s fears helped design our new anaesthetic room

the equipment and research that your support has funded when did life suddenly change for young sports star James?

Supporters of

Win a family break at Center Parcs Open your survey form to find out more! Take part in our readers’ survey – included with this issue of Lifeline – and you could win a break for a family of up to six! You get to stay for three nights over a weekend in a three bedroom Woodland Lodge at any of the Center Parcs UK locations. Simply complete and return the survey by the end of August 2011 for your chance to win.

readers’surve y

Take part in our readers’ survey for the chance a family break to win at any of the four fantastic Center UK locations. Up to six family Parcs members can four-night midweek Street Hospita The car-fre l Children’s Charity break, or a three-nig choose a environmene forest break, staying and how we ht weekend might in a fully-equipped for family t is perfect three-bedroom Woodland Lodge. like you to become get more people bike rides All of the Center supporters. set in beautiful Parcs Villages You may want are forest locations to and offer over hospital in other help the 100 indoor and outdoor family ways. activities, luxurious Please indicate spa facilities and your areas of a subtropical swimming paradise interest. We plus family-friendly will send you restaurants and full details by shops. return post. Please be assured that For the chance the information to win this amazing collected during complete and break simply return this survey. this used by the charity survey will be Your continu ed support is only. It shouldn extreme take more than important to ’t us at Great Ormond ly a few minutes to complete the Hospital Children Street survey and it ’s Charity. We really will help us support make sure that would like to all the children we are providin treated at the g information hospital. you need to know you with all of the about the hospital and charity. All completed We are keen surveys will be to learn if Lifeline entered into interesting read magazine is the prize draw! an and covers the Entries for the subjects you interested in. are prize draw must Importantly we want to underst most received by 31 be whether you August 2011. £1 consider you and for every Only one are appropriately 25p in tax entry per person. to date about n at any at least kept up be paying cancel the declaratiolonger how the money Please use the no you must You can , to the If you are enclosed freepost raised has been and its impact. yourself you donate. the charity. Gains Tax equal n. business spent notifying envelope to return Capital time by or run a giving your declaratio and/or cancel work in your complet Income a payroll We would also your name paying you should 11a. If you company have ed survey. Alternat reclaim, if you change like to find out tax we the charity does your visit www.go advise ively include in Lifeline what new features ? Please complete your sh.org/lifeline scheme ed) to make it a we could survey online. or address. and Yes 7. (continu ts in your Street more interesti would like to Please see page of the Summer Ormond Treatmen does anyonepersonal use? No d ng read. And know a bit more you or about Great 2 2011 car for 16. Do a Stories y be intereste to rs of issue we ld about you – of Lifeline magazin understand how ld have staff nt supporte for full terms your compangiving scheme househo car in our househo ld Hospital to help us l? you came to e 11b. Would ing a payroll s with promine and conditio Yes, one our househo household Interview Street Hospita be a support Street Hospital ns. Thank you cars in our in introduc taking the time cars in Yes, two er of Great Ormond Great Ormond Great Ormond the for or more support to share your through Yes, three Lifeline Yes thoughts. Good luck with you receive ly… No Please answer 8. When No birth. the draw. you general date of all of the following you about post do we tell tell us your of it the more we below – say al article Read all 17. Please make sure that to you. By giving of it us occasion know about our these days 4. Which of these Read most it, reading the This helps might be of interest we don’t have people much supporters, the that and more to receive as statements applies better the job this Flick through of it things that birth it means 12. More of any we will be able your home? via email; would now prefer to each year. ___ Not read your date from the we that they as possible to do in raising Year____ funds Child/children our records missing ication costs. So, to receive ? _______ what’s for Great Ormond to update of friend/s have commun help us save included prefer ___ Month I own my home let us know you like also ). Street Hospital. would Day____ been treated 9. Please What would would at Great Ormond possible outright (without how you e. (when magazin Street Hospital from us a mortgage) like to know I own my home g that apply Name ications 18. Your I First name was commun any of the followin (with 1. Are motivated a mortgage) you tick g by the work that Title Please I rent my home (includin Great ications Ormond Street , Surname to you. address Male all commun Hospital does Email for Other (please e) your home magazin you letters give us state) I was motivated e: Lifeline Female 19. Please except all thank by stories about g full postcod ications I prefer to not say Email for includin specific all commun children helped Email for e by Great Ormond magazin Lifeline Street Hospital 2. Do you have Post read 5. Which of the children under es do you the of magazin the age of 18? following do you I received a fundraisin Yes, aged under type of tick any Please have any 13. Which interest in? Please Postcode g appeal and basis? 5 you you. regular to ns that a seemed it on tick as many Yes, aged 5-10 l donatio the work a deserving cause the special g that apply as apply. note of followin Gardening from financia to support the address make a worth supportin es 10. Apart I wanted to support l, please TV listings sly made magazin 20. Please appears under Yes, . This isaged g of weekly es that 11-15 Street Hospita us in any received have generou a children’s charity Celebrity magazin Cooking number Ormond you have linked to your support weekly es s Great letter would and decided to of magazin Women’ you that is Yes, on the you aged 16-17 if you currently s monthly number support Great or whether these other es indicate Walking/hiking/ra Women’ a unique helps us to contact g ways magazin Ormond about Street Hospital and the followin d in hearing mbling of the No Men’s weekly magazines details tick any because of its you win! Culture/a Please be intereste Men’s monthly should reputatio rts/theatr support. Other (please ming arden r number: to you. n Learn e forms of Home/g dgets/ga specify) Your supporte g that apply Already gy/IT/ga Photography More followin Technolo you do/done 3a. Arecontact you Food we may us your Joining tness es (i.e to time give groups/a time Health/fi magazin 7. As someone e. Please ssociations e and 21. From t interest or telephon Employed who supports Specialis , telephon full-time monthly Sports activities by email address phy, travel) Great Ormond Set up a gift Street Hospital basis d email photogra have one. ______ specify) preferre regular a regular , if youEmployed _______ part-time we currently send of number Other (pleasemagazines on _______ Collecting a Friend mobile _______ items you our magazine Lifeline Become I don’t read magazines online Self-employed Email _______ ______ my the hospital _______ raffle twice a year. s I read all Crossword/Sudoku _______ g STD)____ in the new describe What sort of articles do _______ (includin g best Take part ed type puzzles e number Retired – please you find of interest te in sponsor of the followinone option. Telephon Drawing/painting/ skip to Q4 ______ ion Participa 14. Which select only _____ and like to read? Please _______ _______ crafts more informat Unemplo activities _______ rank the ing you? Pleaselike to receive number_ yed – please skip fundrais Play music/sin phone Street Hospital I would Mobile want Organise of 1 to 5 (1 meaning following on a scale to Q4 Ormond g ion as I I prefer to not say activities about Great much informat e event least interest/5 al Knitting/stitching as – please skip to a challeng Street Hospital addition I receive most interest). meaning Take up Ormond Q4 than I want es we send to our donors. to about Great information 22. Sometimand updates Other (please r my time not like more Street Hospital Voluntee tion I receive specify) if you wouldtion from Ormond informa 3b.know If you will to are employed, Stories about the let us a UK about Great gift in my at al informa I prefer to not say Please Leave a sick children if you are how many children any addition Hospital. ion box below Aid on any help the Street Hospital receiveemploye Street es are informat tick the Information about there in your your Gift at further Great Ormond Fund 15. Please gift by Great Ormondto receive the history of the organisation? and reclaim s your like Street Hospital I would Less tax payer (which increase than Set up In-Tribute hospital Stories Ormond 10 employee 6. on ns about Great We’d e from very much like research being s donatio this gift, about celebrati to complet to treat 10-49 to know how used to help Find out the time employee least 25p). that I want you the last four years patients in Great taking came to be a you s in giving you for I confirm Ormond Street as Gift Aid supporter of Great with a gifts made Thank 50-249 Hospital all previous gifts to the charity Income Raise money employee How donation Ormond tin this survey. Street Hospital. enclosed future the s are put to use collection I have paid using the s and all Please tick any equal to survey s and that 250-499 a Tick Tock Information about return this employees donation Gains Tax at least by the charity of the Become (donating £25k+ following that d Please e. ital envelop Great Ormond member apply to you. Tax/Cap be reclaime not pay Income three years) 500+ freepost that will do employee Street a year over Hospital you if amount box s My child/children Children’s Charity from our tick this relief Please Buy gifts s Catalogue from my family Gains Tax qualify for tax Don’t know Information about gifts to Christma have been Tax or Capital treated at Great ion for your fundraising events a Foundat note that Ormond Street I prefer to not say Please Become Success Member Hospital I am a grandpa Trust stories y involved rent of a child/chil compan charity Get my Information about ng the dren treated at Great in supporti new developm Ormond Street ents at the hospital Hospital ive from

the charity

will contact

you to discuss

representat Note: A ts your requiremen

Terms and conditions of entry. No purchase is required. a) All completed surveys will be entered into the draw. b) The start date is 10 June 2011. c) The closing date is 31 August 2011. d) The prize is a three-night weekend in a Woodland Lodge at any UK Center Parcs for a family of six, to be taken outside school holiday periods. e) The prize is valid until 1 February 2012. Only one entry per person. a) These cannot be exchanged for any other prize or the equivalent monetary value. b) The winner will be notified no later than 16 September 2011. c) The winner will be contacted via telephone, email or post. d) The name and county of the winner will be published on www.gosh.org website after 16 September 2011. e) Great Ormond Street Hospital Children’s Charity’ request permission to use the winner’s name in any publicity relevant to the break for a family of six. f) Activities and extras are not included. Terms and Conditions of Survey. We abide by the Marketing Research Society code of conduct. We abide by the UK Data Protection 1998 Act.

inside

photography/cover and right: David Harrison

04 Our latest news stories 08 Find out about cover star Casey’s fear of anaesthetic 10 New research that aims to help the most vulnerable patients 12 Our guest editor James has news on the redevelopment 14 Read James’s story and how our play specialist helped him 16 Equipment and research we have funded with your generous support 18 A big thank you! 22 Ways for you to join in

Great Ormond Street Hospital Children’s Charity 40 Bernard Street London WC1N 1LE

Lifeline is published by John Brown For John Brown: Sarah Kovandzich, Tim Clear, Emma Martin, Simon Gandy www.johnbrownmedia.com For Great Ormond Street Hospital Children’s Charity: Robert Butt www.gosh.org/lifeline Thank you to our guest editor of Lifeline, James, who did a fantastic job of interviewing Ellie Richardson. © 2007 Great Ormond Street Hospital Children’s Charity. Registered charity no.235825.

PEFC/16-33-440

Tel: 020 7239 3000 Fax: 020 7837 5062 Supporter Services: 020 7239 3131 supporter.care@gosh.org www.gosh.org With thanks to the following companies for their generous help in making Lifeline happen: Print and paper by: Polestar www.polestar-group.com GI Solutions www.gi-solutionsgroup.com RR Flexo www.mailingfilms.co.uk Metro Mail www.metromail.co.uk

hello from…

Hi, my name is James and I’m 16 years old. I’ll be your Lifeline guest editor for this issue. When I was younger, I played a lot of sport but then when I was 13 years old, I had a cardiac arrest and was diagnosed with long QT syndrome. There’s more about my story on pages 14-15. In this issue, you can also read my interview with Ellie Richardson, who told me all about the redevelopment of the angio theatres at the hospital and what that means for cardiac patients of the future. You’re helping to make all this work possible. On pages 18-21, you’ll find news about some of the ways different supporters have been raising money for the hospital and its patients. This issue lists the latest events you can get involved in too. I hope you enjoy it. James

guess what?

have your say on cardiac services

� � � A vital public consultation into children’s heart services across England and Wales is currently under way. Great Ormond Street Hospital is urging its supporters – especially those with direct experience of its cardiac services – to respond. The consultation, which runs until Friday 1 July, follows a review of children’s cardiac surgery, which concluded that fewer, larger centres will result in better outcomes for patients. Dr Jane Collins, Chief Executive of Great Ormond Street Hospital, said: “The review recommended that we remain one of two London centres, and while we strongly support this we are not complacent. “It is important the voices of our families and

The angio hybrid theatre in development as part of Great Ormond Street Hospital’s new Heart and Lung Centre

staff are heard, not only for the future of our hospital but more broadly for the future of children’s cardiac services across the UK.” Dr Allan Goldman, Chair of the Cardiorespiratory Unit at Great Ormond Street Hospital, said: “We understand how difficult it is when local units cease to

do surgery. At Great Ormond Street Hospital, ensuring the best outcomes for our patients is at the centre of all our work and we do believe that the case for fewer, larger cardiac centres offering the full range of paediatric specialities has been made and will mean a better service for children. “Families should bear in mind that although some centres are planning to stop doing surgery as a result of the review, patients may still be able to see the same cardiologist or surgeon, because those teams will move and join forces with the other, larger centres. And the service model is to ensure follow-up and diagnosis can take place where needed close to home.” Great Ormond Street Hospital is the largest centre in the UK for children’s cardiac surgery. For more information on the Safe and Sustainable review and to take part in the consultation, visit: www.specialisedservices.nhs.uk

Spea membe k to a call 02 r of staff or 0 7239 a copy 3 of the c 125 for o n su docum ent or m ltation ore informa tion

vitamin ‘may help prevent’ spina bifida � � � Each year, about 100 children in the UK are born with spina bifida and other neural tube defects. These defects arise when the neural tube – the developing structure that will become the brain and spinal cord – is not completely formed in the

dedicated research partner. “From our laboratory work we know inositol can stimulate cells in the early embryo. Scientists developing embryo to are now studying whether proliferate more quickly, an everyday vitamin correcting the defect that supplement could prevent would develop in spina future cases. bifida,” he said. “We’re Prospective mothers are inviting women who have already advised to take had a pregnancy affected folic acid – also known as by spina bifida or another vitamin B9 – as a way of preventing spina bifida. But neural tube defect and folic acid alone is not always who are planning another pregnancy to contact us. effective, and researchers The trial is conducted by think the addition of telephone and e-mail so inositol – a naturally people don't need to come occurring molecule found in meat, fruit and vegetables to London to take part.” – may lead to better results. Dr Nick Greene is one of Visit tinyurl.com/6znwbwx the researchers working on for details. For news of other a trial at the UCL Institute ground-breaking research of Child Health – Great projects at the hospital, visit Ormond Street Hospital’s www.gosh.org/research

talking to… John, dad of Luca, age four

uca was born with meconium aspiration syndrome, caused by the fact that her bowel had opened in the womb. Her lungs were flooded with the thick meconium, which was severely impeding her respiratory function. When Luca was finally delivered by C-section at her local hospital in Plymouth, she was rushed to the intensive care unit. “Luca and I were then flown to Great Ormond Street Hospital on a private jet. Doctors tried to stabilise her using traditional methods,

news

but this proved ineffective so was completely removed. Luca was put on an ECMO A week after she had been machine, which is similar to a admitted to Great Ormond heart-lung bypass machine. It Street Hospital, she was well was the only remaining option enou gh to be flown back to and carries an increased her local one and, just under risk of causing bleeds on the a month after she had been brain for newborns, so I was born, she was allowed home. asked to sign a consent form. “We had been warned that The ECMO gave Luca’s lungs Luca may have suffered some a rest while doctors worked neurological problems but to remove the meconium. It she made a fantastic recovery was so frightening to see her and is a happy, healthy little hooked up to the imposing girl who runs rings around her machine but by day four, mum and dad! We will always she was showing significant be enormously grateful to signs of improvement and the wonderful staff at Great on day five, the machine Ormond Street for saving her.”

guess what?

that’s entertainment! � � � A new easy-touse system that offers patients and their families a comprehensive bedside entertainment service is being rolled out across the hospital. The patient bedside entertainment and education (PBEE) system works via an all-in-one touch-screen monitor and is free for patients and parents to use. Patients are able to watch and listen to more than 30 different TV channels and radio stations, use the internet, watch movies, play games, listen to audio

books, access hospital and ward information including patient surveys and menus, and use educational resources so they can continue their studies while in hospital. The screen works like an

The new system will help children to retain many aspects of their at-home lives

it’s a record!

iPad, with the patient simply touching the screen to get to what they want to see or hear. Access to e-mail and social networking sites will help keep children in touch with family and friends, but parents can be assured that the internet is a filtered service to ensure inappropriate websites can not be opened. Access to any content that requires parental permission or is only suitable for children above a certain age is controlled via the use of smart cards. In time, the hospital plans to link the system to its catering service so that patients can order meals via the touch screens.

� � � If you are considering leaving a legacy to Great Ormond Street Hospital Children’s Charity, why not come along to one of our open afternoons organised by the Legacy fundraising team? You will get an exclusive experience which includes a presentation from Nick Baldwin, the hospital archivist; news on the latest research programmes; a talk from a senior nurse, plus a video featuring one of the patients. What’s more, you’ll take a tour that covers key areas of the hospital where you will meet hospital staff and be able to talk

ome a To bec st tion Tru it a d n u Fo se vis er, plea memb sh.nhs.uk/ o www.g tion and a d n u fo nline apply o

photography: David Harrison, Disney/Pixar/KPA Press/eyevine

My favourite bedside entertainmen would be... t John Terr y and Frank Lampard doing kick-ups Samuel, six !

team. We currently have more than 7,000 members but we really do want to invite more people to get involved and have a view. Members can get involved as much or as little as they like so it need not take up much time.

� � � Great Ormond Street Hospital Children’s Charity is officially a recordbreaker. It set the Guinness World Records title for the largest gathering of people

see for yourself

become a Foundation Trust will work alongside the member hospital’s management � � � The hospital is on track to apply for Foundation Trust status later this year. As reported in the last issue of Lifeline, as an NHS Foundation Trust, we will still be part of the NHS but will have greater independence in our decision making. As a membership organisation, it also means that we will consult with our members to find out what they think about issues affecting the hospital. There will also be a Members’ Council which

news

Music Magpie

to them about their areas of work. The tour ends at the beautiful Grade II-listed hospital chapel where the chaplain, Jim Linthicum, talks about the role of the chaplaincy in supporting families and children. Refreshments will be provided and you can bring along a guest. The afternoon events will be held during September. Places are limited, so call supporter services on 020 7239 3131 to book a place as soon as possible or to find out more information

� � � Is your home full of unused CDs and DVDs taking up valuable space? Well, we may have the solution for you. We have teamed up with Music Magpie to give our supporters the opportunity to turn their unwanted CDs, DVDs and games into cash for Great Ormond Street Hospital Children's

dressed as Peter Pan at multiple venues. During Peter Pan Week in April last year, a total of 5,206 participants of all ages transformed into the boy who would never grow up for events held at the hospital and in schools across the country.

Charity. All you need to do is request a free box or freepost envelope for your office or home and start collecting. What’s more, if you collect 100 items, Music Magpie will collect the contents for free and drop off a replacement box. We will receive around 50p per item, so this really is a fantastically easy way to raise money! To request your box please email your name and address to companies@gosh.org

cover story

Easing the fears of young patients like Casey is at the forefront of plans for the hospital’s new Heart and Lung Centre When Casey was first treated at Great Ormond Street Hospital (see his story far right), he was petrified of being put under anaesthetic. “It was awful as he was old enough to understand the things that were going to happen to him,” says Casey’s dad. “It would sometimes take half an hour to get him to the theatres.” A need to help children like Casey was one of the driving forces behind plans for a dedicated anaesthetic room for the angio

Casey at home with his family

technology on display than in the theatre. It will be a calm environment that’s much less clinical. We plan to make this special room as child-friendly as possible.” The walls of the room will feature child-friendly motifs that tie in with the patient journey – an interactive art installation that patients experience on their way to the anaesthetic room. A forest theme, complete with tweeting birds and

“We plan to make it as child-friendly as possible”

taking away the fear Casey (above) and consultant anaesthetist Mark Thomas (above right)

hybrid theatres being built as part of the hospital’s new Heart and Lung Centre. The centre is due to open next May. Until now, patients have had their anaesthetic administered in the operating theatre itself but Dr Mark Thomas, the hospital’s Clinical Lead for Anaesthetics, explains: “When children see the doctors and nurses in their scrubs, with masks on and all the clinical equipment, it can cause great anxiety – especially when they’ve had a lot of procedures already. “In the separate, dedicated anaesthetic room there will be less

photography: David Harrison

“It will be a calm environment that’s much less clinical” fluttering butterflies, aims to distract and entertain children with a nature trail that is designed to make the patients feel relaxed. “The idea is to see the anaesthetic room as the destination for the patient,” says Mark, who has worked as a consultant at the hospital for 11 years. “It is the beginning of the procedure of course.” There are also plans to install monitors or screens so that the patient can watch a film as the

anaesthetic takes effect. In addition to the psychological factors, there are practical reasons for planning a separate anaesthetic room, says Mark: “Parents usually want to accompany their children and stay with them until they are asleep. “Until now, there has not been a separate anaesthetic room in this area so parents have come into the theatre wearing their regular clothes and outdoor shoes. “For hygiene reasons, this hasn’t been ideal.” A separate room means that parents can stay with their child while they are anaesthetised and allows play specialists and interpreters to help explain to the child what to expect. Also, partitioning the theatre from the anaesthetic room means that the next patient can be prepared for a procedure while the operating theatre is cleaned and sterilised. “Currently, patients have to wait until we’re ready to start a procedure before they begin to make their journey to theatre,” Mark continues. “By having separate rooms, it means that we can bring the patient to the anaesthetic room, ready to start. We’ll be able to get more cases done, which is clearly an advantage.” Dr Thomas is raising funds for the anaesthetic room by taking part in the London Triathlon (30-31 July). You can support him at www.justgiving.com/ Mark-Thomas7

real lives

talking to… Casey, age 11 hen I was eight, I was diagnosed with leukaemia and had to visit Great Ormond Street Hospital for bone marrow etic treatment. I had to have anaesth really each time I went, and I’d get to be frightened. I used to pretend me. sick so they wouldn’t give it to at ut sho and am scre I’d kick and nts, the doctors, nurses and my pare g. cryin t star and then “I used to hate the journey from e my bed to the theatre. Ever yon ng kne w they had to do som ethi to help so Phil , a con sult ant y ana esth etist , mad e up a stor er, ract cha urite favo abo ut my e Har ry Pott er, hav ing the sam hea rd I e mor The me. as trea tme nt es it, the less scar ed I got. The nurs for tre thea into me h use d to pus ir, my trea tme nt on an offic e cha calm to ed help and fun whi ch was me dow n. Min a, one of the play y nurs es, wou ld dres s up in funn cost ume s to mak e me laug h. “But it was Phil who real ly ies. calm ed my fear with his stor for them of CD a e mad He even befo re me to liste n to at hom e and nt I wen t into thea tre. My trea tme say a end s this yea r and I’d like to and mas sive than ks to Phil , Min a help ed the doc tors and nurs es who to mak e me well aga in.”

e Call supporter services to mak the e rais us help a donation and £250,000 we need to build the new anaesthetic room for the angio hybrid theatres

research

improving survival

“Where infants are concerned, there are other factors to consider”

A major new research project aims to improve survival for children with impaired immunity

Successful adult trials have led the way for trials on children

My favourite bedside entertainmen would be... t a laptop with wi-fi Sebastian, 16

early in the development of lung disease. The CPAP technique works by keeping the lungs well-inflated with the use of gentle pressure via a facemask. In the trials, more than twice as many

My favourite bedside entertainment would be... a TV screen on the ceiling and soundproofing! Nicola, 14

photography: David Harrison, Mark Thomas & Life In View/Science Photo Library, Phototake Science /Photolibrary

Many children at Great Ormond Street Hospital are unable to fight infections normally. This can arise from genetic problems, as well as from diseases such as leukaemia or from treatments that damage the immune system. Currently, should these children go on to develop severe lung disease, a number of them will face a grim struggle to stay alive. However, recent work in adults has shown improved survival if a treatment called continuous positive airways pressure (CPAP) is used very

adults survived with CPAP than without. Now, thanks to a new grant from Great Ormond Street Hospital Children’s Charity, research is set to take place to see if children can benefit similarly from this technique. “The plan is to set up early CPAP trials for the end of the year to run for three years,” says Dr Mark Peters, a Consultant in Paediatric

poorly. They are at risk of potentially fatal respiratory failure – something which hasn’t changed much in the CPAP last 10 years.” equipment As Dr Peters explains: “Separate trials are necessary as working with children, especially infants, is far more complex. “Adult studies suggest very dramatic improvements in rates of survival using early CPAP. But of course where infants are concerned there are other factors to consider. For example, although it’s very easy to explain to an adult that they will benefit greatly from wearing a facemask, you can’t persuade a nine-month-old infant that wearing one is good for them. They might get very agitated. As a result, things like sedatives may have to be used to allow them to tolerate the masks.” It’s not only the intensive care team that is involved,

involvement, although my team will be co-ordinating the treatment of the children in need of early CPAP. “If early CPAP is effective in children, many more

will survive treatment for immune disorders. This result would dramatically improve outcomes for many teams across the hospital.” And there are also other

“Working with children is far more complex”

“There are many patients at the hospital who fight infection poorly” Intensive Care and chief investigator for the trials. “CPAP is a standard technique that is currently widely used, but we intend to use it slightly earlier on children and infants at a high risk of lung disease. “There are many patients at Great Ormond Street Hospital who fight infection

real lives

as Dr Peters points out: “Early CPAP is not just an intensive care study, it’s a collaboration between many teams at the hospital who are involved with weakened immunity in children including the transplant team, the oncology team and the infectious diseases team. It’s a hospital-wide

trials that the team would like to see take place. “The prompt to develop the grant for early CPAP and to run the trials was the great results we got from the adult trials,” says Dr Peters. “There are other different techniques in intensive care that we would like to trial over the next few years, but that all depends on securing further funding.” Please visit www.gosh.org/ breakthroughs to find out more about the pioneering work we have done on heart and lung disease over the years

first person

building a better future

James interviews Ellie Richardson

Will it have loads of amazing equipment?

“Hi I’m James, your guest editor. I met clinical planner Ellie Richardson to talk about Great Ormond Street Hospital’s new state-of-the-art theatre.”

What do you do at the hospital? I work between the clinical staff in the hospital and the architects and engineers of the new buildings. I explain the plans to the clinical staff and help the architects and engineers understand what the doctors and nurses do.

What’s so cool about it? We’ve talked to clinical staff and parents about the times when children go to have procedures. A lot of hospitals tend not to have anaesthetic rooms now, although they do have anaesthetic space. But we have planned a separate anaesthetic room where the parents can go and be with their child until they are asleep. Also, if they need an interpreter or someone to sign for them if they’re deaf, they too can go into the room before the patient goes into theatre.

All the walls are up and we’ve got all the services: power, lighting and oxygen pipelines. Plus the ceilings are almost closed, including the cables and huge ventilation shafts that we use for all the clean air. Many corridor walls have been skim-plastered and we’ve got the boxes where the patient journey mural will go along the wall. There’s an LED board that goes behind a printed forest mural on the wall and motion detectors will pick up when a child is walking. As they go along, a little animal will appear animated in LED. It’s quite magical!

When did the work start? We started to plan this in 2005. We demolished the building that used to stand there in March 2008, and we had our breaking ground ceremony – which is when we had a clear site ready to start the building work – in May 2009.

When will the building open?

photography: David Harrison

We will have a new angio hybrid theatre – one of few in the country. It’s a traditional angiography laboratory used for doing an X-ray to see inside the patient while we’re doing surgery. Unlike a surgical operation, you don’t actually make an incision – you do a lot of it through a tube or a catheter, so it’s minimal invasion and the patient recovers a lot faster. We’ve also got everything needed for a surgical operation so, if need be, we could do half a procedure through minimal invasion and half through an open procedure.

Whereabouts in the hospital will it be?

What work has been done so far?

Tell me more about the new theatre that’s being built.

research

The plan is that it will open in spring 2012. The building gets passed over at Christmas and then we have to check all the equipment and do any finishing touches. The first wards will open in March and the theatres in May.

It’s going to be right in the heart of the new Morgan Stanley Clinical Building on the third floor.

Who will the new theatre help most? Lots of cardiac patients will be helped, but other procedures will also benefit as the theatres are very innovative. For example, there will be opportunities for some of the combined work that ENT [Ear, Nose and Throat] do with cardiac patients, such as tracheoscopy or urology work. So it’s not just for cardiac patients, although they will make up the majority that benefit.

It will. In the hybrid theatre, we’ll have a brandnew biplane allowing the surgeon to see images of the patient’s heart in 3D during a procedure. There will also be operating lights with cameras embedded in them to film the procedure, which will help to train students. We’ll have a digital surgeon’s panel that controls everything in the operating theatre, such as humidity, temperature and lighting. Plus there will be screens so that doctors can look at X-rays or scans without having to leave the operating table. If the patient is awake, these screens could be used to let them watch a film or listen to music during the procedure.

Is there special equipment that the theatre needs for operating on children? We have to have different sizes of equipment for the different sizes of children we treat, and also because of the range of procedures we undertake. Also, with the new hybrid theatre, there is equipment for both invasive and non-invasive work. Now that’s a lot of equipment! To watch the video of the full interview please go to www.gosh.org/lifeline

a true story

a whole new ball game After teenager James collapsed playing tennis, the discovery of a heart condition changed his life dramatically Three years ago when James was 13, he was a champion at tennis for his home county of Hertfordshire and trained six times a week. Then one day during practice in September 2008, he suddenly collapsed. “I don’t remember a thing,”

he says, “but they reckon my heart stopped for at least 11 minutes.” Thankfully, a quickthinking tennis parent, Alan Percy, managed to perform CPR (cardiopulmonary

to this,” says mum Sarah. “James had fainted during a tennis practice a couple of weeks earlier, but we thought that was probably because he was dehydrated and hadn’t had breakfast beforehand.” Following his diagnosis, James got used to a slower pace of life: “I didn’t do that much – mainly played on my PlayStation, watched TV and saw friends.” Then in May 2010 he began to feel ill: “I was wearing about six layers of clothes under the duvet but I still felt cold.” So Sarah took James to their local hospital where an echogram found an infection growing behind James’s ICD. He was transferred to Great Ormond Street Hospital where he spent five weeks last summer. The ICD was removed and after James had what Sarah describes as ‘the Domestos of antibiotics’, he was fitted with a brandnew type of ICD (called a

“I was wearing about six layers under the duvet but still felt cold” resuscitation) and gave this to James until the ambulance arrived. After initial treatment at another hospital, James was transferred to Great Ormond Street Hospital, and was diagnosed with a condition called long QT syndrome, a disorder of the heart’s electrical rhythm that is estimated to affect about one in 2,500 people. James spent 11 days at the hospital and was fitted with a small device known as an implantable cardioverterdefibrillator (ICD). The ICD monitors the heart and uses electrical pulses to restore its normal rhythm as needed and can restart the heart if it stops completely. “There hadn’t been any real indication that there was anything wrong prior

James used state-ofthe-art equipment

real lives

James on the road to recovery at the hospital

talking to… play specialist, Janet Holmes ’ve bee n a play spe ciali st here and for 22 yea rs. My colle agu es ren I do all we can to prep are child the for – ilies fam r – and thei hav e. proc edu res they ’re goin g to an to or min m see ht “Wh at mig be very adu lt, like a bloo d test , can way s scar y for a child . We dev ise t to help child ren dea l with wha . inst aga up e com to g they ’re goin t “For exa mpl e, we mig ht pain use d with syrin ges to get the child s or to them . Or we mig ht use doll w. kno they t wha out find boo ks to time “We aim to mak e the child ’s sible in hos pita l as norm al as pos win g by help ing them play and sho . them with play to pare nts how take Play is a child ’s life, and if you ng taki ’re you them from y that awa . awa y wha t’s norm al for them the “If a child ’s in inte nsiv e care , ing pare nts may thin k ther e’s noth thei r they can do. But they can rub ic, child ’s feet or han ds, play mus few are re The ies. stor sing or read play . situ atio ns you can ’t ada pt for s “Pla y aids reco very and help they ’re dist ract the child from wha t goin g thro ugh . l “I’ve eve n had a pad dlin g poo to child a for care e in inte nsiv r play in afte r they ’ve had thei ove d!” rem s nula can and s dres sing

I subcutaneous defibrillator) that lowered the risk of infection. He was the first patient at the hospital to have the equipment. “It sounds strange but I was so happy when he went back to Great Ormond Street Hospital,” says Sarah. “I knew he was in safe

is vital to keep your spirits up and be positive when your child’s in hospital.” James and his mum still laugh about an impromptu game of onehanded catch they played! A year on from his last stay, James goes back for regular check-ups but he’s now able to play tennis once a week and is in a football team. He says that his priorities have changed: “Before I collapsed, I only ever wanted to do sport. I can’t play tennis like I used to, but what’s happened has broadened my outlook and I actually now enjoy school more than I used to!”

“What’s happened has broadened my outlook” hands again.” While in hospital, James even sat a module for his physics GCSE with the help of the Children’s School at Great Ormond Street Hospital and UCH – and got a grade A. He also enjoyed time with his play specialist Janet Holmes: “Janet was great. We played cards and the game Uno and chatted about this and that.” Mum Sarah also relied on Janet’s support: “Janet allowed me to laugh and encouraged me to make the other patients laugh too. It

Find out more about the redevelopment of our new Heart and Lung Centre at www.gosh.org/redevelopment

To read more talking to interviews with our staff and patients please visit www.gosh.org/lifeline

how does it all add up?

research update With our latest appeal now launching, we wanted to update you on the results of research funded by our previous appeals, to show you the difference that these campaigns can make to children’s lives chronic kidney disease summer appeal 2008 The renal team was recently able to complete a 20-year follow-up study of children with severe chronic kidney disease whose kidneys failed early in their lives. This was the largest study of its kind worldwide. And

“This information is providing a springboard for further research”

fundraising

17 as part of their treatment. The drug is given by daily injection and is not without risks. This information, and the charity’s ongoing support, is providing a springboard for further research to understand and help treat children with severe kidney disease.

perform transplants on children who previously would have been too sick for this treatment. It also means children face a reduced risk

“Children face a reduced risk of organ damage”

while it found that we outperform any other centre when it comes to ensuring that children on dialysis grow healthily and without contracting bone disease, researching the long-term effects of the treatments we provide means we can offer even better care. The results suggest that many children on dialysis do not require additional growth hormone

bone marrow transplants summer appeal 2009 Professor Persis Amrolia is leading projects to develop bone marrow transplants that require virtually no chemotherapy. Recently, his team used targeted antibody-based treatments to cure 13 infants born without a functioning immune system. These therapies mean we can now

of both severe organ damage and infertility. Thanks to donations from our summer appeal supporters, this research is now moving to address other challenges. In the next year, we hope to launch a ground-breaking project which will use antibodies to target radiotherapy to the bone marrow of children with severe relapsed leukaemia, reducing the levels of potentially damaging radiation delivered to other organs in the body.

talking to… Yvonne, mum of Oscar

hen Oscar was diagnosed with his second leukaemia, we bone were told that he would need a psed marrow transplant (BMT). He rela te edia imm an ing need ks, after 12 wee that second transplant. We were told than his chances of survival were less d by 10 per cent. Oscar’s life was save ied out the pioneering work that is carr ond Street by the BMT team at Great Orm ren like Hospital. Without this work, child It is the Oscar would not be here today. makes generosity of people like you that leading this work possible. Oscar is now That is the life of a normal 11-year-old. would something we never thought we h, muc so all you k Than say. be able to You really from the bottom of our hearts. do help make it happen.”

Here is some essential equipment you have funded Flake ice machine

Piezon scaler

This machine produces trays of small ice blocks used for the fast chilling of DNA samples. The samples are then analysed using techniques that can identify genetic disorders. In 2010, some 1,200 patients benefited from this service.

This mobile dental equipment can be taken into theatres or wards and used to remove calculus (also called tartar) from the teeth of children who have trouble brushing, such as those who are long-term clinically sick or those with severe learning difficulties.

£2,206

£2,914

Pharmacy fridge (for two)

£5,901

(for two)

It’s crucial that medicines are stored correctly, especially those that must be maintained at low temperatures. These fridges include digital temperature control, forced-air cooling and an audio-visual alarm. They are also fully lockable.

FastPrep®-24

X-ray gowns

Genetic Analyzer

This instrument is used in the molecular microbiology lab to take DNA extracts from patients’ fluids in order to identify which bug is causing a patient’s infection. It will be used across the hospital for all clinical departments.

Xenolite X-ray gowns are protective aprons used by the clinical and scrub staff in operating theatres. The wearing of these gowns is compulsory as they are used to protect the staff from radiation while a patient is having their X-ray taken.

The ABI Genetic Analyzer enables us to read the exact sequence of a piece of DNA. We are using this machine to search for a mutation in the gene sequence of patients with inherited deafness. The hospital is the largest centre in the UK for testing of this kind.

£6,200

£6,511

£22,422

(upgrade)

a big thank you to… ...everyone who’s donated, run, spread the word, performed, held a sale, partied or done anything in aid of Great Ormond Street Hospital Children’s Charity. We can’t include all of you, but here are some highlights…

they’re behind us!

Jimmy Osmond in Cinderella at Hastings’ White Rock Theatre

dside My favourite be entertainment would be... so the channel Dave ear! I can watch Top G Benedict, 10

The staff of HQ Theatres, part of Qdos Entertainment Group, are working hard to help raise money towards our two new operating theatres as part of our Theatres for Theatres Appeal. HQ Theatres and 16 other theatres across the UK which staged a Qdos pantomime have been holding bucket collections over the pantomime season and support is set to continue throughout 2011. Your local theatre staff will be skydiving, running, holding quiz nights, CD bring-and-buy sales, and taking part in charity football matches to raise money. The Ambassador Theatre Group have also been supporting our Theatres for Theatres Appeal throughout their pantomime season again this year by holding bucket collections at theatres across the UK. Their support has been staggering over the past three years and in total they have raised just under £180,000 from pantomime collections and other activities. They’re panto-tastic! To find out how your local HQ Theatre is supporting the Theatres for Theatres Appeal, please visit www.gosh.org/hqtheatres

right on target

cut out for success

Dawn Coulton has recently hit her personal fundraising target of £100,000 for Great Ormond Street Hospital Children’s Charity. Dawn has fundraised for the charity for the last 15 years through an annual ball and other fundraising events. Her daughter Charlotte, 15, was born with the rare condition bilateral aniridia, which results in the nonformation of the iris, and infantile glaucoma causing blindness. Charlotte has since had 44 operations to improve

The HAIRraising appeal has raised £600,000 towards our new neurosciences operating theatres, and is now on course to reach its £1 million target! HAIRraising was launched in 2010 by stylist-to-the-stars John Frieda, along with wellknown names in the British hairdressing industry. Individual stylists, national chains and independent salons fundraised with cake sales, skydives, bike rides, fashion shows and even sponsored tattooings! A total of 1,750 salons registered to participate in HAIRraising 2010. Effort and

her sight. She now has 20 per cent vision in her left eye and an artificial right eye. “Charlotte’s been amazing all the way through,” said Dawn. “She never moans and she’s so brave. I won’t ever stop fundraising. We are lucky – if I can help other children and families and give something back to the hospital, that’s all I want.” Dawn is to do a sponsored walk from Northampton to the hospital this June. Thanks to coverage in the Northampton Chronicle & Echo, she hopes that half of Northampton will join her!

fundraising

creativity were awarded money-can’t-buy industry prizes including spending a week in John Frieda’s Los Angeles salon, styling celebrities for the BAFTAs and working on a London Fashion Week show. Find out more about the HAIRraising appeal and ways to get involved at www.gosh.org/hairraising

o Want t r u own hold yo event? ising fundra 39 3179 or 0 72 Call 02 w.gosh.org/ visit ww volved get-in

John Frieda at Lee Stafford’s fancy dress cut-a-thon

Jessica scoots to victory In 2008, Jessica’s family’s world turned upside-down when they were told she had a tumour on her brain stem. Five days later, Jessica was rushed to Great Ormond Street Hospital for life-saving surgery. Her surgeon, Mr Dominic Thompson, removed her tumour during a six-hour operation. Jessica was very ill after the operation and it was another month before she and her family were able to go home. Jessica has since made a full recovery – so much so

that last year she took part in the tri for life Scootathlon at Dorney Lake in Berkshire. Tri for life has chosen Great Ormond Street Hospital Children’s Charity to be one of its four leading children’s charity partners over the next four years. It has pledged to raise £150,000 to build a new patient-and-family waiting area and an interview room within the hospital’s new Lung Function Unit. To find out how to take part in the 2011 tri for life event, call the Challenge Events team on 020 7239 3164 or visit www.gosh.org/triforlife

a big thank you to…

fundraising

game on! talking to… Katie, age 26 very one kno ws Gre at Orm ond y, Stre et Hos pita l save s lives dail . nce erie exp d -han and I hav e first ratio n Age d 11 mon ths, I had an ope rt. hea my in hole to patc h up a big lady “I wen t bac k to mee t Jane , the y who look ed afte r me as a bab how me wed sho She . ago rs yea 25 e sinc ed elop dev the hos pita l had ting for wai girl little a met also I . then atta che d a hea rt tran spla nt who was job. rt’s hea her g doin hine mac a to . alive be t ldn’ wou With out it, she t “I then met a boy abo ut eigh the mon ths old who had just had very was mum His . had I n ratio ope had has who e eon som hap py to mee t ratio n. ope the r afte life lthy hea full, a staf f “I am eter nall y grat eful to the unt for savi ng my life. Whi le no amo to say of mon ey will eve r be eno ugh rais e than k you , I’m dete rmin ed to like min e. cash to help save mor e lives 00 I hav e alre ady rais ed ove r £8,0 . ,000 £10 for g and am now goin ey “I’ve now see n whe re the mon ded nee it’s t wha and rais ed will go mor e for. This has mad e me eve n ing. rais on p kee dete rmin ed to e “I’ve decided to put my gratitud ania Tanz for gue intri my together with ro. ‘Am I by climbing Mount Kilimanja ker?’, I a keen walker, climber and trek excited hear you say. Well, no – but I’m ging llen cha , one ng about becomi I myself physically, mentally and ” too! ally, tion emo s am sure at time

gastro team trek to Kilimanjaro The Gastroenterology team at Great Ormond Street Hospital is seeking 30 trekkers to climb Mount Kilimanjaro to raise funds for a research project focusing on genetics. The gastroenterology department at the hospital is one of the largest centres in the UK. Every year, it treats thousands of children who have complex and life-limiting conditions affecting the gut as well as the pancreas and liver. Members of the Gastroenterology team, including consultants Dr Neil Shah and Dr Nikhil Thapar, are taking on the challenge of climbing Mount Kilimanjaro. The objective is to raise funds for a new

research project into understanding the genetic causes of, and improving curative therapies for, infant inflammatory bowel disease (IBD). Patients with IBD can suffer abdominal pain, diarrhoea and bleeding. IBD can affect children as young as one month old – the disease is particularly severe in these infants and it may be resistant to all currently available medicines. By signing up to this challenge, you will trek alongside the hospital team and help them raise much-needed funds towards this research. For more information visit www.gosh.org/kilimanjaro

You can help Katie raise money k and at www.goshwhataclimb.co.u climb hata oshw m/g g.co www.justgivin

f all o s to rted us s k n Tha suppo t year ’ las to who you ing from logue – , y ue ta u by b tmas ca catalog op s ’s h Chri his year h.org/s t s o e .g se www visit

white hot hope

BR26071_05_11COVER4Col.indd 1

Teenagers enjoy chilling out on the beanbags

7-03-2011 10:17:04

Great Ormond Street Hospital Children’s Charity is excited to announce its new charity partner, BRIDES magazine UK. BRIDES will be supporting the charity through its White Hot Hope appeal to fund a quiet room in the new cardiac ward at the hospital. “Brides-to-be spend more money on themselves in the run-up to their wedding than at any other time in their lives, and will be delighted to know they are

Children and young people at Great Ormond Street Hospital are able to make friends and take a break from the stress of their medical routine by relaxing in a chill-out space fitted and kitted out by Xbox. The Xbox 360 Activity Room, which opened at the end of 2009, was recently updated with the latest equipment. Managed by The Children’s Hospital School at Great Ormond Street and UCH, it includes four Xbox machines, plasma screens and graffiti art. “It’s more than just a gaming area – it’s a sanctuary,” said Nick Adlington, project leader at the school. “Play is very important to young people’s treatment and recovery. It’s providing normality to their day.”

shopping for a cause too,” Camilla Newman, publisher of BRIDES, said. “We will be donating a percentage of our White Hot Hope advertising revenue from the November/December issue to the charity, and supporters of the scheme will vow to make a difference too with a percentage of their sales in November also going to the cause.” Jacqui Goldhill, Acting Director of Corporate Partnerships at Great Ormond Street Hospital Children’s Charity, said: “We are delighted to be involved in this special project. We’re very grateful to BRIDES for committing to raise vital funds for children with heart problems as every penny raised will make a huge

difference to our patients and their families. “Every year, we need to raise £50 million to help rebuild and refurbish Great Ormond Street Hospital, provide vital up-to-date equipment and fund research into better treatments for children.” During this appeal, BRIDES will be rallying support and donations through advertising space, pop-up shops and phone competitions. BRIDES will also be working with Modern Bride at Excel in London (4-6 November), who will be donating a percentage of profits from each ticket sold to White Hot Hope. To find out more about what is happening near you, visit www.bridesmagazine.co.uk

want to join in? We organise a wide range of exciting fundraising events – fun activities, energetic runs, adventurous treks and much more. Here’s a sample of what’s coming up…

➜ Schools 1km Challenge ➜ June/July 2011 Get your school to organise a 1km race or challenge your teacher to beat the class by completing 1,000 star jumps! Get sponsored to take part and raise money for Great Ormond Street Hospital Children’s Charity. Sign up now at www.gosh org/1kmchallenge

➜ Run to the Beat ➜ 25 September 2011 Love music and running? With 17 live music stages and 12,500 competitors, this is the event for you!

➜ Royal Parks Half Marathon ➜ 9 October 2011 This half-marathon event follows a scenic route through four of London’s most famous Royal Parks.

➜ tri for life ➜ 10 July 2011 A fantastic event for beginners and experienced triathletes alike. Sign up now and support Great Ormond Street Hospital Children’s Charity, one of the organiser’s chosen charities.

➜ Adrenaline ➜ August 2011 Get your heart racing for our Cardiac Wing this August. Feel the rush of the wind as you freefall for 2,310m at 120mph, followed by the peaceful sensation of floating as your parachute unfurls. You’ll have the adrenaline rush of a lifetime as you skydive from 3,650m to raise donations!

➜ adidas Women’s Challenge ➜ 11 September 2011 Join our fantastic team of women taking part in this very popular 5km fun run for all ages around London’s Hyde Park.

➜ Bupa Great North Run ➜ 18 September 2011 The most iconic half-marathon in the world has a fantastic atmosphere all the way from the start in Newcastle’s city centre to the finish in South Shields.

➜ Trek Kilimanjaro ➜ 9-19 February 2012 Kilimanjaro is one of Africa’s most magnificent sights, and at 5,985m it is the continent’s highest peak. Visit the tallest freestanding volcano in the world when you tackle this charity challenge helping children living with gastro conditions at Great Ormond Street Hospital.

For full details of all our Challenge events go to www.gosh.org/challenges or email challenges@ gosh.org. For general enquiries about these events, please call 020 7239 3131

e n i l a n Adre A Auugguusstt Get your heart racing for our Cardiac Wing this August and Get hearthearts racinghere for our Cardiac Wing Street this August and helpyour the little at Great Ormond Hospital! help the little hearts here at Great Ormond Street Hospital! Be part of our skydiving team and join us today Be part of our skydiving team and join us today www.gosh.org/adrenalineaugust www.gosh.org/adrenalineaugust Call 020 7239 3164 Call 020 7239 3164

Get yo u pum Geptinyo r heart g aunr dhe pumpj i a unmgpiannd stratrt g! start jumpin g! ©2007 Great Ormond Street Hospital Children’s Charity. Registered charity no 235825. GOSH01903 ©2007 Great Ormond Street Hospital Children’s Charity. Registered charity no 235825. GOSH01903

guts? glory!

Got the Get the

Other trek availab s le

Trek Kilimanjaro

Great W all of C 24 Sep hina tember –3 Octo trek ber 201 Inca Tr 1 ail trek 12–21 Novem ber 201 1

Helping children living with gastro conditions at Great Ormond Street Hospital

9–19 February 2012 Visit www.gosh.org/trek Call 020 7239 3164 Email challenges@gosh.org