Tick Tock Club newsletter Winter/Spring 2014 by Great Ormond Street Hospital Children's Charity

Newsletter â&#x20AC;˘ winter/Spring 2014

Contents

In this newsletter we want to demonstrate the lasting impact the Tick Tock Club has made, and give you a glimpse of our next ambitious project. We have included highlights from the launch of the latest appeal, interviews with top surgeons who explain the importance of this centre, and real life stories from remarkable patients Jade, Keegan and Jordan. As part of our commitment to keep you informed, we will be sharing these regular updates with you twice a year, and I’m delighted to introduce this new-look edition.

Over the past seven years, the club has partnered the hospital’s management in addressing its greatest needs and driving forward change for the benefit of patients, their families and staff. I am hugely proud of the Tick Tock Club’s achievements so far in raising more than £20 million and creating wonderful new wards, but we need to keep pushing our expectations in order to continue the good work.

coming years. With your support, the Tick Tock Club can meet the increasing demands being placed on the surgical team and make their vision of a new surgery centre a reality. Together, we can make a difference for the children in need of our care.

Today, the hospital is facing a difficult challenge. We desperately need to expand and improve the current surgical environment at the hospital. Thousands of children come here from all over the country for often life-saving operations that cannot be carried out elsewhere. These numbers are due to grow significantly in the

Gary Lineker Patron, the Tick Tock Club

Cover: Ten-month-old Inaaya wearing her hip splint after surgery.

I hope you enjoy reading the inspiring stories and continue to feel as passionately as I do about this urgent cause.

Club news The latest news from the Tick Tock Club

Our next challenge Why Great Ormond Street Hospital desperately needs a new surgery centre

Me and my surgeon Patient Leo interviews his surgeon Dr Kate Cross to find out more about the surgery centre

Advancing surgery through research 10 Dr Andreas Roposch explains the importance of research for surgical advancement

Kidney

The passion and commitment shown by all of you, the Tick Tock Club’s members, has made an enormous difference to the lives of thousands of sick children and their families. Thank you!

Heart and Lung

“In this newsletter we want to demonstrate the lasting impact the Tick Tock Club has made, and give you a glimpse of our next ambitious project.”

Surgery

Welcome

Making the difference for children 12 with renal problems Antony describes how Eagle Ward made a huge difference to his family Making the difference for children 14 with heart problems Jordan talks about being one of the first patients on Bear Ward

The Tick Tock Club Newsletter

CLUB NEWS

Launch of the surgery centre appeal

Father and son – a look back in history Former Chairman of the Bar, Desmond Browne QC, is a longterm supporter of Great Ormond Street Hospital. His father, Sir Denis Browne, was a world-renowned paediatric surgeon who pioneered many new surgical techniques for paediatric birth defects, such as cleft lip and club foot. Here, Desmond describes his father’s unique character and his own passion for Great Ormond Street Hospital.

Twins Zainab and Jannat with Gabby Logan Panel host Gabby Logan with (from left to right) Ken Costa, Steve Ingham, Stuart Lancaster, Huw Jenkins and Joe Curry

The next phase of the Tick Tock Club was launched in style last September in St James’s, with top names from the business and sporting community coming together to support the new £10 million appeal to fund an urgently needed surgery centre. Ken Costa and Huw Jenkins, chairs of the first two Tick Tock Club appeals, also attended the event to share in the club’s successes and endorse the new appeal.

“The event provided the perfect springboard...” Guests were welcomed to the event by Alan Hodson, Chair of the Special Trustees of Great Ormond Street Hospital Children’s Charity and Tick Tock Club founding

“The charity desperately needs to raise funds to make the hospital’s new surgery centre a reality, so that all patients can benefit from the state-of-theart facilities they deserve.” member. Alan spoke about the importance of the club and its great successes before introducing a special panel discussion hosted by Gabby Logan. The panel was made up of Consultant Neonatal and Paediatric Surgeon, Joe Curry; England Rugby Head Coach, Stuart Lancaster; and PageGroup Chief Executive, Steve Ingham, who revealed their secrets for building success and excellence through teamwork. Stuart Lancaster said: “The charity desperately needs to raise funds to make the hospital’s new surgery

centre a reality, so that all patients can benefit from the state-of-theart facilities they deserve.”

“The 38 bus on Theobald’s Road must be as familiar to the barristers of Gray’s Inn as to the doctors and nurses at Great Ormond Street Hospital. Half a century ago it was the original Routemaster on whose top deck my father and I travelled to the hospital on Saturday mornings for his ward rounds. “Little did I then know that it was my father who first described the vein, which so often haemorrhaged during tonsillectomies. Nor did

Thank you to everyone who has supported the Tick Tock Club’s third appeal. See here how we are progressing towards our new fundraising target of £10million by 2017. Pioneering surgeon Sir Denis Browne watching Punch and Judy in the hospital with nurses and children, 1920s

I know that, when appointed Resident Medical Superintendent in 1927, he cleared the backlist by doing 25 tonsillectomies a day and 10 on Saturdays.

2017

10m TARGET

Funds required Funds raised

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“He must have been a maddening colleague. He practised his tennis shots against the wall of his bedroom and his golf by driving into the Homeopathic Hospital next door. But he was a pioneer by being the first to devote himself exclusively to paediatric surgery and refusing to treat his patients as adults in miniature. “When Sir Mark Potter and I organised a fundraising quiz for Great Ormond Street Hospital in Gray’s Inn Hall last year, I wondered what on earth he would have made of it all. I am immensely proud of him.”

5m 4m 3m Jan 2014

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Appeal Launch

Patient celebrates 25 years of living with transplanted heart and lungs

Special guests Zainab and Jannat, who were born conjoined twins, were also there on the night. They were successfully separated when they were just one year old, making them only the third set of conjoined twins to survive at the time in Britain. The event provided the perfect springboard for the club’s third appeal and it was a fantastic opportunity to share this next challenge with our supporters.

The challenge ahead

Tineke Dixon

A former patient of Great Ormond Street Hospital has celebrated the 25th anniversary of her heart-and-lung transplant, which she received at the hospital in 1988 when she was a teenager. Tineke Dixon, now 41, was born with

two holes in her heart and is alive today because of the organs she was given. Tineke made a special visit to the hospital last November, meeting some of the original staff who treated her, including Co-Medical Director Professor Martin Elliott, and the current transplant team. At the time

of Tineke’s surgery only one in three children survived five years after this rare type of transplant. This figure is now two in three, and rising. To read more about Tineke, visit the Tick Tock Club news pages

www.gosh.org/tick-tock-club/news

The Tick Tock Club Newsletter

SURGERY

Our next challenge

The Mittal Childrenâ&#x20AC;&#x2122;s Medical Centre

The second phase of the hospital redevelopment is underway and the programme for the construction of the new Premier Inn Clinical Building is running within budget and to schedule. This new building will join with the existing Morgan Stanley Clinical Building to complete the Mittal Childrenâ&#x20AC;&#x2122;s Medical Centre, with wards spanning both buildings to provide modern, state-of-the-art clinical facilities.

The new surgery centre is due to open in 2017, providing a 24-hour service for the hospital.

The old Cardiac Wing next to the new Morgan Stanley Clinical Building

Preparations for the construction of this new building, including site preparation and preliminary building works to create access routes, are underway and construction work on the old Cardiac Wing is due to start in summer 2014. This will involve demolishing the current clinical building floor by floor and rebuilding it to a new, world-class specification, that will include the new multidisciplinary surgery centre, located on Levels 3 and 6. This new surgery centre is due to open in 2017, providing a 24-hour service for the hospital and will be used to treat some of our most critically ill patients.

The new surgery centre One in three of all our young patients undergoes some form of surgical procedure during their time at Great Ormond Street Hospital and children often travel great distances to have surgery here. At present our five surgical inpatient wards are spread across four different hospital buildings. This means that many of the patients are a long way from theatres and precious time is lost just getting children into surgery. The dispersion of the wards also makes it very difficult for our surgical teams to share knowledge. While demand for the expertise of our surgical teams is already very high, numbers are expected to increase in the coming years. Although the surgery figures are vast and the needs of our patients

At present, our five surgical inpatient wards are spread across four different hospital buildings. so complex and urgent, Great Ormond Street Hospital never ceases to give the very best care to each baby, child and young person who comes here for an operation. The new surgery centre, with its flexible space and tailored post-surgical ward, will enable our surgeons and nurses to save, and improve the quality of, our patientsâ&#x20AC;&#x2122; lives in the best possible environment.

Great Ormond Street Hospital patients helping work progress

You can make the difference We have already seen the amazing difference that the new facilities within the Morgan Stanley Clinical Building have made. Families are able to spend more time together, parents can sleep comfortably by their child and the hospital staff have the 21st century environment they deserve to match the expert care. We now need to provide this same world-class environment for all of our inpatients, particularly

...the journey to and from theatre will be much shorter... those undergoing surgery at the hospital. The co-location of surgical patients, together

with a dedicated team of multidisciplinary nurses and brand new state-of-the-art theatres and post-surgical wards, will create a specialised, efficient and childfriendly surgical pathway. Our aim is that this new centre will help to dramatically improve turnaround time in theatres thanks to integrated equipment and technology to allow for both open and keyhole surgery. The centre will also help our surgical patients to recover more quickly as the journey to and from theatre will be much shorter. Research suggests that proximity to other patients who have undergone similar procedures encourages peer comparison and as a result, improved recovery times. This new centre will enable our expert teams to deal with the growing demand for their services while providing the same worldclass and pioneering care. The Tick Tock Club Newsletter

SURGERY

Me and my surgeon Dr Kate Cross and Leo reporting from Squirrel Ward, the Heskel and Menashi Ephraim Surgical Unit at Great Ormond Street Hospital

Dr Kate Cross

Leo, aged seven, was born with a severe bowel disorder and has been coming to the Great Ormond Street Hospital since he was 18 months old. Today, he’s back to interview Consultant Neonatal and Paediatric Surgeon, Dr Kate Cross, and find out more about the new surgery centre What is your job at Great Ormond Street Hospital? I am a surgeon and I operate on new-born babies and children up to the age of 17 years old.

Leo

Why was I unwell and how did you help me? When you first came to see me, you had lots of problems with tummy pain and constipation. Your tummy was very sore. We did some tests to see the cause of the problem and found that the very bottom of your intestine wasn’t working properly. Since then, we have performed a number of operations, taken part of the damaged intestine out and joined everything back together, so now your tummy isn’t so sore.

We have a dedicated website that demonstrates the difference the Tick Tock Club has already made to children, and tells you why we urgently need a new surgery centre to help even more sick children get better in the future. You can also meet some of our young patients, including Leo in his exclusive video interview with his surgeon Dr Kate Cross, and watch a short video explaining why your support for this worldclass centre is so critical.

When I grow up I want to work in demolition. Did you always want to be a surgeon? I think I always wanted to be a doctor and I always wanted to look after children. When I was a little girl, my brother was very sick and spent a lot of time in hospital, so I wanted to help children like him, and children like you, Leo.

www.gosh.org/tick-tock-club

You were born in Australia. What made you come and work in UK? It wasn’t the weather! I came to the UK because of the hospital. Great Ormond Street Hospital does amazing things for babies and children that most other places in the world don’t do. How many operations do you do a year? I perform more than 300 operations and my colleagues would do a similar amount. We perform thousands of operations in general surgery, but then there are thousands more operations taking place throughout the hospital too. Why does the hospital need a new surgery centre? The hospital has been here for a long time. Buildings that were acceptable 30 years ago are now too small, and some of the equipment we use is a bit out of date. A new surgery centre would give us more space, allow parents to spend more time with their

Leo after his operation last year

children, and ensure patients in the hospital are more comfortable, which will help them recover faster. The new centre will also enable our surgery team to work more effectively and help even more children. How does the Tick Tock Club make a difference to the hospital? The Tick Tock Club is very important because the hospital needs lots of developments, in terms of space and equipment, and it’s not always possible to get these things. People supporting the Tick Tock Club mean that we are able to have these

essential improvements, which help us care for children. What will the new surgery centre mean for children like me? Children won’t need to stay in hospital for as long after they have had an operation. It means that patients will have more space and families will be able to stay with their children. Overall, it will be a much nicer place for you to come and get better. Thank you, Kate. This has been Leo reporting from Great Ormond Street Hospital. The Tick Tock Club Newsletter

SURGERY

Advancing surgery through research

Dr Andreas Roposch with 10-month-old Inaaya immediately after her surgery. Inaaya is wearing a splint to keep her hips in place

“Evidence suggests that patients treated in centres that conduct research receive better care. Very few hospitals in the world partner specialist surgery and research, which allows Great Ormond Street Hospital to offer patients a unique and world-class service. “As surgeons, we need to constantly evaluate our work and measure outcomes so that we can develop and improve. Conducting patient-based research helps this process. When you deliver first-hand clinical care, you can make sure that patients are prioritised by taking into account

their preferences, while ensuring delivery of care is cost-effective. We must use our surgical time effectively to free up our capacity to treat more children.”

Impact of the surgery centre “In the hospital, different wards and services are really spread out. For example, in orthopaedics our cast room is in a completely different building to our operating theatre, and the operating theatre is far away from the ward. Sometimes we have to factor in considerable travelling time just to get our patients to the right

“The aim of my research is to ensure early and more accurate diagnosis of children with DDH. “To achieve this, we surveyed more than 400 international specialist orthopaedic surgeons from 34 countries, asking them to list the criteria they use to

Dr Andreas Roposch, Consultant Orthopaedic Surgeon and Honorary Reader at the UCL Institute of Child Health, is creating national guidelines to help diagnose children with developmental dysplasia of the hip (DDH), a problem with the way the hip joint develops. The international impact of his work exemplifies the importance of combining surgical practice with specialist research. Surgery cannot progress without research

The solution

“...we surveyed more than 400 international specialist orthopaedic surgeons from 34 countries, asking them to list the criteria they use to diagnose hip dysplasia.”

“Having a dedicated surgery centre should make this process much more efficient and ensure a better patient experience.” place. Having a dedicated surgery centre should make this process much more efficient and ensure a better patient experience.”

My research – the problem “DDH is the most common musculoskeletal abnormality present at birth in the UK, affecting 50 in 1,000 babies. If treated early, the outcome is usually excellent. However, it can be difficult to detect and diagnose at the earliest possible time. Late diagnosis of the disease – this

means after the baby is 12 weeks old – will increase the likelihood for surgery as a child grows. More severe forms of the disease may result in permanent disability. “Our research has shown that across Europe, the criteria to diagnose DDH in newborns are not well-defined and that clinical experts can disagree on what those criteria are. This could explain why treatment often begins too late. There is a need for widely agreed diagnostic criteria, accessible to surgical experts and local GPs.”

diagnose hip dysplasia. We were surprised and concerned to find a huge variation in the results, with experts naming a total of 232 different diagnostic criteria for DDH. “Based on a consensus of clinical experts, we then reduced the number of diagnostic criteria from more than 200 to just seven. This work has been published and allows clinicians to compare their personal preferences for diagnosing DDH with those of their peers. “By diagnosing patients more quickly and accurately, we will see a reduction in the number of babies inappropriately referred to the hospital, which allows us to focus on those children who need our help the most.” The Tick Tock Club Newsletter

kidney

Making the difference for children with renal problems Antony’s family experienced the difference between the old and new facilities first-hand, when two of his children needed kidney transplants Antony and his sons Keegan and Jesse were ecstatic when baby Jade was born. However, life changed dramatically when, at three years old, Jade collapsed suddenly while watching television. She was referred to Great Ormond Street Hospital, where the family discovered that she had a rare degenerative kidney disease, and without a transplant, she was given just four years to live. Later that same year, the family were devastated to find out

Antony with son Keegan and daughter Jade, who both had kidney transplants at Great Ormond Street Hospital

Miraculously, after a suitability test, Antony was found to be a perfect match for Jade. Over the Christmas period, both father and daughter had their surgery – surgery that saved Jade’s life.

that Keegan, now 13 years old, had the same inherited condition. Miraculously, after a suitability test, Antony was found to be a perfect match for Jade. Over the Christmas period, both father and daughter had their surgery – surgery which saved Jade’s life. Last year, Keegan beat the odds too, when a kidney donor match was found. After his operation, Keegan recovered at Great Ormond Street Hospital, but unlike Jade, he was able to benefit from the brand new facilities in the British Kidney Patient Association Children’s Kidney Centre, also known as Eagle Ward, which the Tick Tock Club helped make possible. For the past nine years, Jade and Keegan have spent considerable time at the hospital, allowing their parents to witness both the old and new facilities. While the standard of care and dedication from hospital staff hasn’t faltered over the years, Antony recalls how the new ward made a huge difference to his family. “The previous kidney wards were located in a part of the

hospital built in the 1930s. They were cramped, outdated and not suitable for the demands of modern medicine. Jade’s illness was an extremely stressful time and the conditions on that unit made it impossible to have any private time.

“The ward was spacious, modern and offered us the facilities we needed during those difficult times. We couldn’t have asked for more.” “The environment on Eagle Ward, where Keegan was treated, could not have been more different. “The ward was spacious, modern and offered us the facilities we needed during those difficult times. We couldn’t have asked for more.” Both Jade and Keegan still need regular monitoring and medication, but they’re doing well. In September 2013, they both won gold medals in the football tournament at the British Transplant Games.

Dr Stephen Marks is a Consultant Paediatric Nephrologist and Clinical Lead for Renal Transplantation at Great Ormond Street Hospital and treated both Jade and Keegan. “Not only do the new facilities on Eagle Ward give our patients greater comfort, privacy and dignity, they of course serve a vital clinical role. Patients like Jade and Keegan, who have just received a transplant, must take antirejection drugs, which leaves their immune system compromised and vulnerable to infection. Two new isolation bays, which we did not have on the old kidney wards, mean that transplant patients can now recover without the risk of picking up common illnesses from other children on the ward.” The Tick Tock Club Newsletter

Heart and lung

Making the difference for children with heart problems

Inpatient numbers continue to grow The graph below displays how our inpatient numbers are continuing to grow and shows the importance of our redevelopment programme

Jordan was admitted to Great Ormond Street Hospital when he was 15, suffering from a severe heart condition known as dilated cardiomyopathy

“I was one of the first patients on Bear Ward after I collapsed because my heart wasn’t pumping as well as it should have been. Before I was admitted to Great Ormond Street Hospital I felt quite nervous, but I knew that they had some of the best doctors in the world. Because my heart was too badly damaged to have a pacemaker, I was put on

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Morgan Stanley Clinical Building opens (Redevelopment Phase 2A)

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Launch of the Tick Tock Club

“Having my own room and en suite gave me lots of privacy and it was really comforting having my mum sleep next to me...” “I stayed in intensive care on Flamingo Ward where they monitored me really closely. I don’t remember much, but my mum told me how amazed she was with the state-of-the-art equipment and the one-to-one care I received.

“After my operation I feel like a completely different person – I still have regular check-ups, but since my operation I’ve got a lot more energy and I’m able to study performing arts at college, which I love! I’ll never forget what Great Ormond Street Hospital has done for me.”

“After my operation I feel like a completely different person...”

Octav Botnar Wing opens (Redevelopment Phase 1)

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“When I was recovering, I moved to Bear Ward, which was awesome. It’s so much bigger and brighter than the old ward where I went when I first arrived. Having my own room and en suite gave me lots of privacy and it was really comforting having my mum sleep next to me – even my nan found the sofa bed comfortable! It also made a huge difference having a playroom for kids my age. I had lots of fun playing Scalextric with the Play Specialist.

a Berlin Heart, which is an artificial heart. I was really lucky and only had to stay on this for two days before they found me a donor match and I had a heart transplant. Sometimes children can stay on this artificial heart for months. In just one week, I had three operations and had stayed on both the old and the new cardiac wards.

Jordan, taking a break from playing Scalextric on the ward

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Inpatient episodes

The surgeons tried to fit Jordan with a pacemaker, but unfortunately his heart was too weak and so the only option was for him to be fitted with a Berlin Heart. This artificial heart kept Jordan alive until a donor heart could be found. As a result, Jordan has had firsthand experience of both the old ward facilities and the two cardiac wards in the new Wolfson Heart and Lung Centre. Here, Jordan shares his story and describes the difference that the Tick Tock Club made to his recovery.

Inpatient episodes

Year

In the first year of opening, the British Kidney Patient Association Children’s Kidney Centre saw an increase of 13 per cent in inpatient admissions. Since the opening of the Morgan Stanley Clinical Building, inpatient admissions have increased by around 10 per cent within the cardiac services of the Wolfson Heart and Lung Centre.

In 2017, once the Premier Inn Clinical Building has opened and the Mittal Children’s Medical Centre is complete, we anticipate being able to treat up to 20 per cent more children. The completion of the Mittal Children’s Medical Centre will see the hospital’s vision to provide modern facilities for all our acute inpatients become a reality.

Thank you for your support – your membership of the Tick Tock Club has made a huge difference to our patients, their families and our world-class staff. As this first newsletter highlights, we aim to build on the Tick Tock Club’s fantastic achievements through the creation of a new state-of-the-art surgery centre within the Mittal Children’s Medical Centre. This will allow us to continue pushing the boundaries of what’s possible in paediatric surgery and provide the best outcomes possible for our young patients. The Tick Tock Club Newsletter

Our Tick Tock Club members We are sincerely grateful to our patron, Gary Lineker, and to the Tick Tock Club members, including those who wish to remain anonymous. On behalf of the inspiring patients and the remarkable staff at the hospital, thank you. 4 Charity Foundation Mr and Mrs Terence Adams Nick and Kate Austin Mr Tony Ball The Barclay Foundation Peter Beckwith OBE The Beecham Family Alan and Sara Bennie Emily and Len Blavatnik Mr Bobrovnikov and Mrs Chernavskaya The Bunting Family John and Susan Burns CB Richard Ellis Jason and Belinda Chaffer Mr and Mrs Joe Chambers Sir Trevor and Lady Chinn John Coldman Mr and Mrs Ken Costa The Peter Cruddas Foundation The DG Charitable Settlement Dr Genevieve and Mr Peter Davies Ian and Penny Davis Sarah and Lloyd Dorfman Alex and Tara Easton Tamara Ecclestone André Elshout and Mike Elms The Entertainer Michael and Francesca Evans FDD International Ltd Dorothée and Pierre-Henri Flamand Gary and Catherine Grant Constance Green Foundation Charles and Kaaren Hale Robert Hall Foundation

Mrs R E Heale The Higgins Family The Hobson Charity Limited Alan and Christiane Hodson Brette and Gordon Holmes Steve Jacobs David and Elizabeth James Huw Jenkins The Jenkins Family Nick and Linda Johnston Rose Marie and Erland Karlsson Mr and Mrs Nagi R Kawkabani Philip King Charitable Trust The Lake House Foundation Jude Law Jason Leonard OBE Eugène and Stephanie Léouzon Keith and Muriel Lipman The Lotus Foundation Gavin and Luise MacDonald Charly Malek and Alessandra Steinherr Charles and Sophia Mason Matt and Emma The Maaike McInnes Charitable Trust Scott and Suling Mead George Michael and Kenny Goss Mitch and Alison Moore Hilton and Louise Nathanson Fiona and Andrew Neale Andrew and Marina Newington Amicia and Richard Oldfield Elizabeth and Daniel Peltz Simon Picken QC and Dr Sophie Picken Paul Pindar

Gilberto Pozzi Alexandra Raphael and Family The Reuben Foundation Jane and Nick Robinson Stuart and Bianca Roden The Rothermere Foundation The Countess of Rothes The Dr Mortimer and Theresa Sackler Foundation The Basil Samuel Charitable Trust Vipin and Beatrice Sareen Ian and Carol Sellars Osman and Claudia Semerci The Shanly Foundation Dominic Shorthouse John Sibree and family Standard Chartered plc Sir Hugh and Lady Stevenson Robert Stirling Lord Sugar and Lady Sugar Bobbi Hernandez and Morgan Sze Andrew and Katrina Taee The Taylor Family Foundation Chris and Carole Taylor Richard and Susan Thornton - The Thornton Foundation Stanley and Beatrice Tollman Laura and Barry Townsley The Toy Trust Amanda and Dominic Vail CT van Hoorn Charitable Trust Vivid Imaginations Garfield Weston Foundation Michael and Rachel Weston Mr and Mrs Roger Wyatt

We are also extremely grateful to our benefactors who have kindly supported the Tick Tock Club. If you would like more information on the stories within this newsletter, or would like to learn more about the Tick Tock Club’s latest appeal, please contact the Tick Tock Club team at ticktockclub@gosh.org or by telephone on 020 7239 3133.

Great Ormond Street Hospital Children’s Charity. Registered charity number 235825.