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Pioneer Spring/summer 2013

Working to a new beat How computer modelling is assisting cardiac surgery at Great Ormond Street Hospital

The child first andPioneer always 1

Welcome to the latest edition of Pioneer.

This issue focuses on a new chapter for the hospital, and the recently appointed Chief Executive, Jan Filochowski, details his hopes for the future and the challenges to be tackled.

Nineteenth century fundraising included a sponsored cot initiative

Twenty-first century fundraising includes the annual F1® Party

We also have exciting news of a £10 million funding boost for the Centre for Children’s Rare Disease Research, the newest edition to our portfolio of key strategic redevelopment projects. Finally, the growing importance of technology is evident via Professor Andrew Taylor’s groundbreaking cardiac imagery research.

Opened in 1852, long before the NHS and central funding, Great Ormond Street Hospital had to raise every penny of its running costs from the public. Our archivist recently told me that in the 19th century, a key fundraiser was Mrs Margaret Gatty, who was the editor of a children’s journal called Aunt Judy’s Magazine. She began publishing stories about the children at the hospital, and her readers responded by sending in gifts for the patients. The magazine then went on to begin a sponsored cot initiative, which captured the imagination of hospital supporters. Likewise, more than a century later, many of the positive stories of patients visiting Great Ormond Street Hospital in the 21st century would not be possible without your generosity.

I hope you enjoy reading some of these stories in this edition of Pioneer.

Tim Johnson Chief Executive of Great Ormond Street Hospital Children’s Charity 02 Pioneer

Contents 04 Around the hospital

14 Working to a new beat

Latest news from the hospital

06 The Pioneer interview: Jan Filochowski

A Q&A with the hospital’s new Chief Executive about the hospital’s current challenges and future opportunities

17 Collaborating for better results

09 Me and my physio

Three young patients introduce us to the physiotherapists who put them through their paces

10 I have a rare skin condition

Chelsea shares her story with Pioneer on how having a rare skin condition affects her life

13 Why I support the charity: Scott Mead

The former Goldman Sachs partner describes his experience of the hospital and his commitment to supporting it

How Great Ormond Street Hospital is working with a haematology department in the Ukraine for the benefit of children in both countries

18 Feature: the Children’s Acute Transport Service

A detailed look at the mobile intensive care team who provide life-saving care for children around the south east

22 The team: Somers Clinical Research Facility

We profile eight members of a unique department at the hospital, who help transform research breakthroughs into clinical care

26 A parent’s perspective: my little boy

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How computer modelling is assisting cardiac surgery at Great Ormond Street Hospital

Harpreet recounts the experience of when her son was diagnosed with cancer, and describes their journey since

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Around the hospital…

Funding boost Our plans for a Centre for Children’s Rare Disease Research, bringing together the country’s leading clinicians and researchers to find effective treatments for children’s rare diseases, has received a £10 million funding boost.

The award from the newly established UK Research Investment Partnership Fund is a significant step towards raising the £85 million needed to build and equip the Centre. Great Ormond Street Hospital Children’s Charity has undertaken to raise the remaining amount, and the partnership funding was given as part of a governmental initiative to support projects that have private funding from industry or the charitable sector worth a minimum of double the public contribution.

Professor David Goldblatt is Director of Clinical Research and Innovation for Great Ormond Street Hospital and the UCL Institute of Child Health and an academic lead for the new Centre. He said: “This is fantastic news. The Centre will provide huge opportunities to advance research into children’s rare diseases and translate discoveries into effective treatment faster than ever before.”

“The work will not simply assist in finding treatments for rare diseases, but will inform our understanding of generic and more common disease mechanisms.”

The new Centre, to be built adjacent to Great Ormond Street Hospital and the UCL Institute of Child Health, will work to find treatments and cures for rare diseases, of which there are 6,000 identified.

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The Newlife Birth Defects Research Centre HRH The Princess Royal attended the official opening of the Newlife Birth Defects Research Centre (BDRC) last October.

Based at the UCL Institute of Child Health, the hospital’s research partner, the BDRC was funded through generous donations as part of our Bringing Research to Life campaign.

Birth defects are a leading cause of infant mortality in the Western world. In Europe, more than two per cent of pregnancies are affected by a birth defect, of which there are more than 4,000 types.

“The Newlife Birth Defects Research Centre will be the first research grouping to focus specifically on understanding how birth defects arise, and finding new ways to treat and prevent them.”

The centrepiece of the BDRC is a newly built laboratory and office space dedicated to researching the causes of birth defects, advancing their diagnosis and treatment and preventing such conditions in the future.

Some of the most common birth defects include neural tube defects such as spina bifida, congenital heart defects, inherited vision disorders, cleft lip and palate and Down’s syndrome.

Professor Andrew Copp, Head of the BDRC and one of the scientific investigators working at the Centre, says: “We are able to prevent only a very small number of birth defects. We remain ignorant of what actually causes common birth defects such as cleft palate, heart defects and spina bifida. A huge amount of research needs to be done. The Newlife Birth Defects Research Centre will be the first research grouping to focus specifically on understanding how birth defects arise, and finding new ways to treat and prevent them.”

The Times recognises our top doctors

HRH The Prince of Wales visits the hospital

The Times newspaper featured its ‘Britain’s Top Children’s Doctors’ edition last December, which included many of Great Ormond Street Hospital‘s experts. The hospital staff included were credited for their skills and contribution in their field of expertise, alongside their counterparts based at other national paediatric centres.

In total, 24 staff members from the hospital were mentioned in the article, including Professor Martin Elliott, Co-Medical Director and clinical lead for the tracheal service and Dr Peppy Brock, Consultant Paediatric Oncologist.

Bobby Gaspar, Professor of Paediatrics and Immunology at UCL Institute of Child Health and consultant at the hospital, was featured in the Infectious Diseases section, with a particular mention of his gene therapy work on the ‘boy in the bubble’ syndrome, which has featured in Pioneer previously.

Two consultants in mental health, Margaret DeJong, a consultant child and adolescent psychiatrist who specialises in psychological trauma, and Isobel Heyman, an expert in severe OCD and Tourette’s syndrome, also featured.

This is the third issue of The Times ‘Top Doctors’. This year, the focus is on the specialists who treat Britain’s youngest patients. The list is not exhaustive, but is a glimpse into the work of the pioneering doctors and surgeons who are transforming children’s lives.

In February, HRH The Prince of Wales visited staff and patients at Great Ormond Street Hospital.

During the visit, The Prince was introduced to children and families on The Reuben Foundation Children’s Cancer Centre.

The Prince met key nursing staff and six-year-old Joseph Black and his parents Pippa and Jeremy, from London. Joseph, who was wearing a crown that he had made with his play worker especially for the occasion, said The Prince was “very kind”. “He asked me about my Airfix kit and said he’d loved making them when he was a little boy. He said that he used to get the glue all over his fingers and I said that I never did!”

The Prince also met neurology patients and Professor Helen Cross, holder of the Prince of Wales Chair for Childhood Epilepsy, who gave him a tour of the JN and Phyllis Somers Neurosciences

Centre. Professor Cross said: “It was a privilege to meet The Prince again and show him first hand how neurology patients are benefiting from vastly improved facilities, particularly here at Europe’s foremost referral centre for epilepsy. The Prince is very interested in our epilepsy service and how we can continue to improve outcomes for patients with this condition.”

On the neurosciences ward, The Prince met eight-year-old epilepsy patient Katie Tuffin and her mother Emma, from Cambridgeshire. The Prince sat down with Katie and rolled some Play-Doh. Katie said: “It was good meeting The Prince. He was kind and friendly. He asked me about Play-Doh and whether my brother plays with me, and I told him he does but he puts it on the floor.”

The Prince of Wales was treated at the hospital as a boy when he was found to be suffering from appendicitis.

Reduction in number of children diagnosed with epilepsy A collaborative study led by researchers at the UCL Institute of Child Health (ICH) shows a significant reduction in the number of children diagnosed with epilepsy in the UK. The study, published in the Archives of Diseases in Childhood, used data collated over more than a decade from primary care providers. The decline in positive diagnoses, which shows a cumulative drop of 47 per cent, is largely attributed to the introduction of specialist services, such as the one at Great Ormond Street Hospital.

The cause of the decline is thought to be due to a combination of factors: fewer cases of misdiagnosis, more rigorous decisions about who to treat, and possibly a decline in brain injury due to a reduction in infections following vaccination programmes.

“However, epilepsy remains one of the most common and most life-limiting neurological conditions to affect children in the UK. It’s important to emphasise that we are not seeing fewer children presenting with epilepsy in our clinics.”

Author of the study, Professor Ruth Gilbert, Director of the Centre for Evidence-based Child Health at the ICH, comments: “Our findings are consistent with those of other European countries and it is very reassuring to see evidence that misdiagnosis rates are down across the board.

The hospital is one of only four centres in the country to provide specialist assessment and surgery for children with uncontrolled epilepsy. In this role, the hospital coordinates all the services throughout London, the south east and east of England, and undertakes all complex surgical procedures.

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The Pioneer interview Jan Filochowski, Great Ormond Street Hospital’s new Chief Executive, talks to Pioneer

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Born in Yorkshire and educated at Cambridge, Newcastle and Oxford universities, Jan Filochowski was Chief Executive at West Hertfordshire Hospitals NHS Trust from 2007. He has held chief executive roles at the Royal United Hospital, Bath NHS Trust, the Medway NHS Trust in Kent, Southmead NHS Trust in Bristol, and Poole Hospital NHS Trust.

He took up his role as Chief Executive of Great Ormond Street Hospital in November 2012. Mr Filochowski is married and has two grown-up children and one grandson.

What did you know about the hospital before you joined?

I knew quite a lot about it from a distance because I have been working in healthcare for my whole adult career and have managed many paediatric services. I knew of its reputation and I also had a reasonably strong sense of what specialist hospital care was about. The other thing I knew about it was its unique fundraising success and how this has helped transform the hospital, allowing it to continue its worldclass work. It’s my view that this fundraising activity has saved the hospital from losing its independent status, which otherwise would have happened in the1990s.

Could you talk us through your career to date?

After university, I spent 10 years at the Department of Health. From there, I moved to the NHS and for nearly 30 years now I’ve been managing hospitals around the south of England. I’ve been Chief Executive of five other hospitals, so Great Ormond Street Hospital is my sixth. I have also acted as an advisor, to the Department of Health (several times) and from 2003 to 2007 to the Prime Minister’s Delivery Unit.

What is your vision for Great Ormond Street Hospital?

My vision for the hospital isn’t about turning the world upside down. Rather it’s for continuity and development. The hospital’s mission is to provide world-class paediatric care, research and education. My role is to provide sureness of direction to support this.

This includes decisions on investment in services, infrastructure and people. All these elements need to come together to provide a clear strategy and vision for the future.

Alongside my management in the NHS, I’ve had two periods in academia. I spent a year as a visiting fellow at Harvard University Medical School in 1997–98 and, more recently, in 2005–06, I spent a year part– time as an NHS University Fellow based at the Judge Business School at Cambridge University. My time at Harvard was very beneficial as I was introduced to process redesign (and particularly lean methods), which involves re-thinking the way you manage by looking at the pathways and the processes that inform the work we do. I used this learning to become one of the first people to introduce lean thinking into healthcare.

Now you have been at the hospital for a few months, what have you learnt that you didn’t know from an outsider’s perspective before you joined?

The main thing is that I get a real sense of it being alive, rather than almost a monument. For me, Great Ormond Street Hospital is now a place that’s bursting with life and people and that’s a very big change from what I saw from outside. I get a sense of an organisation that is moving forward and developing in a very positive way and although there are threats, the opportunities definitely outweigh them.

I’ve taken on hospitals that were doing well, others doing OK, and in three cases struggling and needing real change. Out of these experiences, I got the germs of an idea about what makes organisations tick.

After seven years’ work, these ideas will appear in a book that is being published in May/June called Too Good to Fail?

Why were you attracted to the role of Chief Executive of Great Ormond Street Hospital?

It’s a unique hospital with unique interests and offered a completely different type of challenge for me. As soon as I realised the hospital was interested in me taking on the role, there was a lifting of the spirits, which has not gone away since I joined.

I also think I believed rather naively that the charity funding received by the hospital would transform the whole Trust. While we’ve made great progress and some wards now provide excellent facilities, there is still a great deal to be done to bring the rest of the hospital up to the standards we would all want.

How would you describe your leadership style?

I see it as open, sharing, listening and consultative, but at the same time challenging, analytic, unifying and, when necessary, decisive. My whole ethos is that the answers to problems don’t lie in great leaders. The answers to problems lie in the people in the organisations where the problems exist. Great Ormond Street Hospital is full of capable people with masses of knowledge and insight and it’s my role as Chief Executive to tap into that and act as a catalyst.

You visited Toronto recently – why do you think it’s important to visit other hospitals?

The hospital and the UCL Institute of Child Health together form the largest centre for paediatric research outside North America. I was invited by Professor Rosalind Smyth, the new Director of the Institute to accompany her on her visit to SickKids in Toronto. As well as giving us the chance to discuss how we work together in our new roles, we both recognised the importance of learning from our peers.

SickKids is also one of the top five children’s research hospitals in the world. They have an integrated clinical care and research ethos and it was useful to see how they are organised and to discuss some of the challenges we both face.

When you think about the hospital’s competitors, do you see Great Ormond Street Hospital as competing with its national or international peers?

I’m not sure competition is the right word.

In the UK, we tend to divide our specialist work by areas of the country, although sometimes we may be the only place that offers a certain specialty in the whole of the UK. So rather than competing against other hospitals, I think we’re eager to measure ourselves against other hospitals, and we need to do that against the best hospitals in the world, not just the UK. I know from my visit to SickKids in Toronto that they certainly look at us as much as we look at them to see how they can improve.

“…we’re eager to measure ourselves against other hospitals, and we need to do that against the best hospitals in the world, not just the UK. I know from my visit to SickKids in Toronto that they certainly look at us as much as we look at them to see how they can improve.”

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What do you foresee as the biggest challenges for Great Ormond Street Hospital over the next few years?

I think our biggest challenge is to evolve and develop in order to remain the premier children’s hospital in the UK. The reason this is a real challenge is that it requires the hospital to constantly be moving and developing. We need to be able to look into the future and see how services are likely to develop and then prepare ourselves to deliver care appropriately.

How do you see the current NHS changes affecting Great Ormond Street Hospital?

The impact of the structure reorganisation is to extract us from the direct relationships with local commissioners. Previously, we had contracts with a great many commissioners and the new system will be simpler for us. We will now have an overwhelmingly important relationship with the national commissioning board. While this could be a risk because all our funding comes from the same source, the advantage is that there will be a far greater understanding of our specialist services and what we provide for children.

What lessons do you think you have learnt from your various NHS chief executive roles that you can bring to the fore at Great Ormond Street Hospital?

Firstly, I hope I’ve learnt how to manage a large organisation, particularly hospitals where people are working together in a shared enterprise. You need to understand colleagues, respect their skills and ensure they are able to deliver what they are capable of delivering.

A second insight I hope I bring is an understanding of the processes that drive organisations. You have to truly understand processes to be able to reshape them for the better. The role of a good manager is to understand the ways in which things work and bring in techniques that improve those processes. A hospital is full of processes,

“If we didn’t fundraise, we could still care for children. However, we wouldn’t care for them so well and I fear we wouldn’t care for quite so many.”

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“I think our biggest challenge is to evolve and develop in order to remain the premier children’s hospital in the UK. The reason this is a real challenge is that it requires the hospital to constantly be moving and developing. We need to be able to look into the future and see how services are likely to develop and then prepare ourselves to deliver care appropriately.” from a simple one such as booking an appointment, to a complex one such as a child’s journey from diagnosis through to discharge. Both of them can be mapped out to see if they’re being done efficiently or inefficiently.

Finally, I appreciate that the hospital has both internal and external relationships that are interdependent, and to have an understanding of these connections provides an opportunity for the organisation to thrive.

How do you think, having been here a few months, Great Ormond Street Hospital differs from the other hospitals you’ve worked in?

It feels different in the number of specialist services that wouldn’t be provided in every hospital. In some cases, we’re the only hospital to provide a certain service in the country, in some cases we are the only place in Europe, and in some cases the only place in the world. There’s a sense of uniqueness and specialty. A risk does arise from this, that things are so special they are likely to be in isolation. However, I do have a strong sense of coherence despite the fact that this is a hospital with a whole range of interacting specialties.

Another difference is that you are more often dealing with people at a national level or even international level. Most of our peers are actually in different countries so, if you like, your horizon is different.

Thirdly, I think any hospital is very high profile but there’s a different level of spotlight on Great Ormond Street Hospital.

As a chief executive I am used to going into my newsagent and seeing us in the local paper. But now I go into my newsagent and see that we’re on the front page of The Sun, the highest-selling paper in the country.

Finally, I’ve been overwhelmed by the support for the hospital with all types of

people from all over the country wanting to help in a variety of ways.

How important is charitable giving to Great Ormond Street Hospital?

Charitable giving is fundamentally important.

It is something that enables the hospital to operate at another level. If we didn’t fundraise, we could still care for children.

However, we wouldn’t care for them so well and I fear we wouldn’t care for quite so many. I also think there is a much greater risk that we wouldn’t be a worldleading institution. Philanthropy helps to transform us from being good to being the very best.

How important is it that the hospital stays true to its motto ‘the child first and always’?

I think it’s a great motto, and I liked it so much that I built my presentation when applying for the job around its intrinsic importance to the hospital. However, the key to any motto or strapline is that we constantly ask ourselves what it means in today’s context. For each challenge or process realignment that the hospital faces, we need to interpret and elucidate the motto in that context to ensure that we’re always placing children at the heart of our decisionmaking. I think ‘the child first and always’ is a great reality check and should inform our thinking.

You have a very stressful job – how do you like to relax outside of work?

I work very hard but I do try to separate work from my home life. My marriage is the most important relationship in my life, and I wouldn’t put it at risk for anything. I relax in a variety of ways: I swim a couple of miles every week, play tennis and go high-mountain skiing with my daughter.

While I really enjoy working in the NHS, when I’m faced with a virgin slope at a 45-degree angle then work is the last thing on my mind!

Me and my…

Great Ormond Street Hospital has a specialised team of more than 40 children’s physiotherapists. Physiotherapy takes place in one of three large gym areas or in the on-site hydrotherapy pool. The team assess children’s individual needs and work on specific exercises to help to manage their conditions. Here, three children introduce themselves and their physiotherapist:

Ciaran, Penguin W ard

Where from: Essex Ag e: 10 Physio name: Sue Best thing about ph ysio: I like going fast on the cycling machine Favourite physio ex ercise: Mid-range qu ads, which involve straighte ning my leg Favourite hobby: Fo otball. I’m a Mancheste r United fan, although I love Ronaldo, which is why I have my Real Ma drid kit on Ambition when older : I’d like to be a footba ller, probably a centre ba ck

Jacob, Outpatient

e: 13 Where from: Worcester Ag rion Ma e: nam Physio ’s mean in a good way!

Best thing about physio: She She makes me work hard. floor Getting up gently from the Favourite physio exercise: ount am al equ an ll by and footba Favourite hobby: I love rug yer law to be a Ambition when older: I’d like

Nicole, Koala Ward Where from: London Age: Eight-and-a-half Physio name: Sinead Best thing about physio: Squats, bending my knees Favourite physio exercise: Walking to a chair Favourite hobby: Cooking and crafts. I like making personal birthday cards Ambition when older: A doctor, so I can help other people

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I have a rare skin condition Thirteen-year-old Chelsea has epidermolysis bullosa and has been travelling to Great Ormond Street Hospital from her home in Wales since she was just one year old. She tells Pioneer her story

What is epidermolysis bullosa?

Epidermolysis bullosa (EB) is a group of rare inherited skin conditions in which there is a tendency for the skin and mucous membranes to blister and break down in response to minimal friction and trauma. In the milder forms, children may have blistering limited to the feet and hands, but in the more severe forms, EB can affect many organs of the body apart from the skin and can be very debilitating, painful and life-threatening. As part of a national service, children travel from around the country to be treated at Great Ormond Street Hospital. There is currently no cure for EB, but research into effective treatments is underway. A study using mesenchymal stromal cells for the treatment of children with recessive dystrophic EB is starting at Great Ormond Street Hospital, run

by Dr Anna Martinez and Dr Jemima Mellerio.

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“I don’t have any fingers.

I was offered surgery but turned it down as I can do everything I want.”

Chelsea drawing her latest masterpiece

“ My biggest hobby is art. I love painting and using glitter to make things pretty. Lisa, my carer, comes in twice a week to help me with whatever art I’m working on. I really enjoy being creative and find it relaxes me.

I recently made a dolls’ house.”

“I’ve had my skin problems [epidermolysis bullosa] since birth, but it was only from the age of two or three that I became conscious that I was different from other children. My skin problems affect me on a daily basis in a few ways. I can’t run around with other children because if I fall over I’ll really hurt myself. I can’t eat hard food as it would hurt the inside of my body as it travels down. I have to stick to soft foods such as chicken soup, fish and my dad’s stew. Finally, I don’t have any fingers. I was offered surgery but turned it down as I can do everything I want.

“I take a lot of medicine and things like calcium and iron. I also need painkillers to help when doing my bandages, which I have to change every morning. It takes about 30 minutes each morning to change them, but that’s only because my mum or nan have prepared them the night before. From start to finish, it takes a few hours. However, I also have Polly [Chelsea’s doll] who helps with the bandages. She helps me relax when doing the bandages, although she can be a bit

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naughty sometimes and doesn’t do what I ask her to. She sleeps in my bed at night, too. Rolo, my dog, also gets in for a cuddle in the morning and is very protective of me.

“I attend my local mainstream comprehensive school where I’m in year nine. I have lots of great friends like Emily and Shannon, who don’t treat me any differently from anyone else.

I’m just part of the gang. My favourite teacher is Mr Pilaze, who is the Spanish teacher.

He teases me in a good way and did a bike ride to raise money to buy me a bike that’s specially adapted for my needs.

“I’m 13 years old now and have been coming to Great Ormond Street Hospital since the age of one. It’s quite a long way to travel from where I live in Pontyclun, Wales, but I don’t mind. We travel down on the train, which I really like as you see the world whiz by. I go to the hospital every three to six months and see so many different teams that I stay overnight in the Paul O’Gorman Patient Hotel, Weston House. The best part

of the hospital is playing with the toys they have. Last time, I had a turn with an iPad, which was amazing. They also had really nice Christmas decorations and lights up last year.

“At home, I like to knit and sew. I’ve made a scarf, cardigan and socks for Polly. I also made my one-year-old nephew a hat. I enjoy cooking and have made cupcakes, biscuits and a birthday cake. When I’m older, I’d like to be a cookery teacher. However, my biggest hobby is art. I love painting and using glitter to make things pretty. Lisa, my carer, comes in twice a week to help me with whatever art I’m working on. I really enjoy being creative and find it relaxes me. I recently made a dolls’ house out of cardboard boxes and stuff from around the house.

“Last year, I met Connor, an older boy, who has the same skin problems as me.

If I met someone younger who had just been diagnosed I’d advise them to be positive and enjoy life to the maximum.”

Why I support the charity

By Scott Mead

M

y son Alex was born in April 1992. He was a healthy, energetic and happy baby, but then we noticed that his development seemed to be slowing down and he suffered from a series of colds, a little more than normal. We took him to a variety of GPs, but it became more severe – there was clearly something problematic so we were sent to Great Ormond Street Hospital and he was immediately admitted.

He was diagnosed as having acute lymphoblastic leukaemia, and given at best a 10 per cent chance of survival because of its severity and his age, which at the time was just nine months.

Alex was in hospital for six months until the end of May. In early February 1993, he contracted pneumonia, which caused him to be in intensive care and literally hours from death. We thought we were going to lose him. I think everybody thought we were going to lose him, but the whole team of doctors and medical people put in a hugely professional amount of work to save Alex. Thankfully, the pneumonia was cured and he continued his chemotherapy protocol on the ward.

The overall experience was one of intense stress and huge concern, but we were very appreciative and impressed by the commitment of everybody at the hospital.

It was clear the medical teams were truly experts in their fields. However, the facilities they worked in were very old. All of the patients were together on one large ward, including immune-compromised patients who were at risk from infection.

I remember the day Alex left the hospital after six months. It was a very bright, sunny, unbelievably hopeful and optimistic late spring day. Being able to put him in the car and drive him home was such a joy.

It makes me a bit teary just thinking about it. After leaving, Alex had three years of

outpatient chemotherapy with very regular visits to the hospital. He made a full recovery, studied at St Paul’s Boys’ School and is now a student at Harvard University in the US. He doesn’t remember those early days, of course, but he is well aware of what he went through and everything the hospital did to give him the chance he has today.

“Like all great institutions, to stay great it needs support beyond what it might receive from the government.”

I think if you are a parent of a child and you have the experience of a critical illness, you become deeply involved with the hospital. You can’t help but be impressed on one level with everything that the hospital does, and on another level concerned about the hospital’s ongoing ability to provide the same level of care and find new opportunities for cutting-edge treatments. Obviously, if you are fortunate to have a positive outcome, I think you have a life-long feeling of deep gratitude and appreciation.

You realise what a great institution it is and how, like all great institutions, to stay great it needs support beyond what it might receive from the government.

I’ve tried to help the hospital in a number of ways. Financially, I’ve supported its gene therapy research and redevelopment projects. Regarding the latter, seeing the improved facilities for patients with cancer and other conditions is a great credit to the hospital. To see a new lab or ward first hand that you have played some part in creating is enormously fulfilling and emotionally moving. You feel there is a direct, tangible thing you can point to that is the result of your own support – you feel it’s going to impact the lives of children who may not otherwise have had a chance to have a life.

Scott began work in investment banking in New York during the early 1980s, and later that decade came to London to help to establish the international business within Goldman Sachs. He did this until late 2003, when he left the company to focus on a variety of interests, including serving on the hospital board at Great Ormond Street Hospital for five years, a number of not-for-profit boards in the US and Europe and continuing in business with Richmond Park Partners, as well as successfully re-pursuing a stalled photography career.

I also try to help by giving up my time, whether that be sitting on the hospital board, which I did for five years, or using my photo exhibitions to benefit the hospital. For me, it has been very fulfilling as it means you have the chance to get closer to some of the issues the hospital is confronting – and all institutions benefit from an outside perspective. Similarly, my family are all involved in volunteering at the hospital and Alex is often invited to speak to potential supporters of the hospital, which he enjoys. It’s his way of giving back to the hospital that saved his life and it makes me incredibly proud of him and this wonderful institution.

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Working to a new beat How computer modelling is assisting cardiac surgery at Great Ormond Street Hospital

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of its kind to have a dedicated research programme, thanks to a charitable donation in the 1960s. “This research helps us to push the boundaries of what we can do, but also helps to make our work as safe as possible.”

As it stands, thanks to the remarkable pace of innovation sustained by Great Ormond Street Hospital’s Cardiothoracic team over the past 50 years, the chances of children surviving any single heart operation today are more than 98 per cent.

Undoubtedly, the field has advanced in ways that the Unit’s founders – affectionately known as “the plumber and his mate”, but both giants in their respective fields of surgery and cardiology – could not have imagined when they laid the foundation for the complex and delicate procedures that today’s children undergo.

eclining – a word with negative connotations?

Not if you’re one of the many hundreds of patients who today face less than a 20th of the risk of life-threatening complications following heart surgery than they did in the 1960s.

It’s a remarkable statistic, but far more remarkable are the genuinely pioneering research efforts of the teams who work behind the scenes of Great Ormond Street Hospital’s Cardiology department, such as Professor Andrew Taylor. He is an expert in cardiovascular imaging, using the latest advances in Magnetic Resonance Imaging (MRI) and Computed Tomography (CT) scanning to see through the complications that could otherwise thwart surgeons’ efforts to repair children’s hearts.

“When I first came to Great Ormond Street Hospital as a consultant in 2003, it was already apparent that a large number of the leading cardiothoracic surgeons – certainly from the United States – had come here for training under Marc De Leval,” explains Professor Taylor. “Marc took a number of surgical procedures to the next level, but research really underpins it all.” The Unit at Great Ormond Street Hospital was the first

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As a tertiary referral hospital, patients are sent to Great Ormond Street Hospital often as a place of last hope. The hospital is one of the largest in Europe for treating complex cases of congenital heart defects problems with the heart’s pumping that are present at birth.

“We’ve always recorded all our failures and successes,” says Professor Taylor. “It’s the only way we can really learn more about what we might do better, in cases where things didn’t go as we’d expect. For most surgical treatments, we now have 10, 15, 20 years’ worth of follow-up. It’s a huge pool of information we can use to plan today’s surgery, and also to improve the information and reassurance we provide to families.”

Patients with the most complex heart defects, such as transposition of the great arteries, where the principal blood vessels

“These methods allow the team to treat patients virtually – within the safety of a computer simulation.”

Pioneer 15

of the heart are attached back to front, and tetralogy of Fallot, the most common cardiac cause of blue babies, are likely to require open-heart surgery at one or more points in their early lives. However, a series of landmark trials of a new form of therapy in the past decade have given these patients continued treatment without the repeated trauma of highly invasive surgery.

“When I started at Great Ormond Street Hospital, we’d just begun to offer a new form of therapy to children with leaky pulmonary valves, which can arise in a number of different conditions,” explains Professor Taylor. “Rather than fix this by implanting a replacement valve into the heart via surgery on the chest, we’d begun to trial a technique that involved passing a fine catheter tube up through an vein in the leg, and implanting the valve into the heart by expanding a balloon inside a metal ‘stent’, which then fixes the valve in place.

with open-heart surgery, where recovery can take up to six weeks, these children are back on their feet within a matter of days.

“I think people get very used to their symptoms,” reflects Professor Taylor.

“So often you would see a patient not complaining of any symptoms, have the treatment, and two days later they say: ‘I didn’t realise I couldn’t walk up three flights of stairs, but I can now!’ It’s that sort of change that you really notice.”

Over the 10 years this programme has been running, not a single patient has died from the procedure at Great Ormond Street Hospital. However, Professor Taylor is determined to deliver similar benefits to the 85 per cent of patients currently ineligible for this non-surgical form of valve replacement therapy.

“Using MRI and CT images, we have now started to take the next big step to design devices that fit patients’ needs, and ensure that when these devices are implanted this is done safely and securely, a process that is becoming known as personalised medicine.”

This simple statement belies an impressively futuristic research programme, as part of a set-up that few, if any, other institutions worldwide are fortunate enough to have [see box].

“By 2007, we’d carried out the first ever couple of hundred cases of this kind of ‘non-surgical’ valve replacement.

Today, thousands of the valves are being implanted in children worldwide.

The difference it makes to children’s treatments could not be more pronounced.”

This is no exaggeration. For the 15 per cent of patients needing pulmonary valve replacement who are eligible for this treatment, it means a huge reduction in days spent in hospital – in particular in the Cardiac Intensive Care Unit, where bed space is always in critically short supply. More importantly, compared

16 Pioneer

Heading up a unique team of dedicated in-house bioengineers, Professor Taylor helps to lead international efforts to capture cardiac imaging data as part of a global collaboration with four leading centres in the United States, as well as research institutes in Milan and Paris, and store this vital information alongside clinical data on a patient’s condition.

These methods allow the team to treat patients virtually – within the safety of a computer simulation – and run advanced software programs that test how treatments (drugs, non-surgical devices and surgery) will perform under the unique conditions of that individual’s own heart. This allows the doctors to decide which treatment is best for each individual patient. For devices, the team can also answer the question of whether the device fits well, whether it will buckle or deform, or erode through the anatomy – all in the confines of a computer model, and long before

attempting any surgery or clinical trials of the device in practice.

“Taking the original pulmonary valve replacement as an example, the original mechanical data said that the valve would fail after a certain amount of time, but the metal stent holding it in place would be OK,” explains Professor Taylor. “But look at what happens in the patient, and you find that the valve performs well, while the metal stent buckles and weakens due to the movement of the heart, and eventually fractures. That may not be good news if you’re a patient, and it prompted us to completely re-think the way we carried out our research.”

These approaches are transforming the questions surgeons are able to answer when contemplating what treatment might be best for their patients. They mark a new era of patient-specific, predictive medicine, in which treatment options for each case are modelled in a virtual environment and tested for suitability before surgery takes place.

Professor Taylor is both optimistic and excited about the prospects of this groundbreaking work. Nevertheless, for him the patients and families drive the field ahead.

“I’m constantly amazed that if you engage with families they’ll help you in almost any way. They are so generous in supporting our efforts – we really couldn’t do anything without them.”

From scans to virtual plans – and holding your heart in your hands Professor Taylor’s research means that his team can test what might be best for the patient well in advance of surgery, by trialling new experimental devices and other treatments in the relative safety of a computer program.

Added to this is the technological bonus of 3D printing – a special form of rapid prototype modelling that will literally ‘print’ a physical shape from a computer model. This allows surgeons to hold a resin copy of their patient’s heart and physically plan their surgery to accommodate its unique shape.

Collaborating for better results How Great Ormond Street Hospital is working with a haematology department in the Ukraine for the benefit of children in both countries

Kiev

London

I

n Kiev, Ukraine, the Okhmadyt hospital has many similarities with Great Ormond Street Hospital. Care is free at the point of delivery, it’s the largest children’s hospital and centre for paediatric care in the country, it’s well established, having been set up in the 1930s, and it provides a high level of care for children with cancer.

However, while many parallels can be drawn, equally there are stark areas of difference that have been highlighted by a blossoming partnership between Okhmadyt and Great Ormond Street Hospital.

Established last year, the haematology partnership sees good practice shared between the two sets of staff, with particular emphasis placed upon the education and empowerment of nurses based in the Ukrainian hospital. As part of the programme, Dr Olga Stetsiuk, Head of the Day Care Chemotherapy Department, recently visited Great Ormond Street Hospital to better understand the processes at work. “Having spent time at the hospital, I’ve learnt so much about how the hospital works and how it has achieved its position as an international leader. Here at Great Ormond Street Hospital

how they achieve such positive outcomes.

Furthermore, this is what we should be doing as an international teaching hospital – it’s part of our core objective of improving paediatriac healthcare worldwide.”

Dr Olga Stetsiuk, Head of the Day Care Chemotherapy Department at Okhmadyt hospital

you attach great importance to the training and education of nurses, you have excellent facilities and excellent ratios of staff to patients. These are the main differences from my own hospital back in the Ukraine.

For example, in our intensive care unit we may have 10-plus patients to one nurse.

Here it’s one-to-one care”.

In May 2013, Dr Nick Goulden, Haematology Consultant, and two senior nurses will go to Kiev to deliver training for the nurses based at Okhmadyt. He says the visit will benefit both hospitals as it will be an exchange of ideas.” They may look after patients in a different way but still have very good results, so it’ll be good for us to understand

Dr Stetsiuk is equally positive about the benefits for the nurses under her leadership as, after the training, “the nurses will understand how important they are in the system of treatment. In the Ukraine, less prestige and control is attached to nursing, but in the UK it’s clear that they’re a vital part of the system and we want to empower our nurses to take on responsibility. When visiting Great Ormond Street Hospital, I asked a nurse whether she felt her work was prestigious and she answered ‘Yes’ without hesitation. This is how I want our nurses to feel.”

Points of difference and challenges remain for the staff in Kiev compared with their London counterparts. For example, in the Ukraine they don’t have pharmacists who can take work away from doctors.

Nevertheless, the developing partnership between Okhmadyt and Great Ormond Street Hospital is helping both sides as they strive to do their best for children with cancer.

Pioneer 17

Dr Daniel Lutman, CATS Consultant and Paediatric Anaesthesia Specialist, and Mark Clements, Advanced Nurse Practioner

Road to recovery At first glance, the Children’s Acute Transport Service (CATS) office, located down a quiet side street in central London, could be that of any small, efficient organisation. Only the emergency equipment storage room and the uniformed team members hint that there’s something else going on here. This is intensive care – but on the move 18 Pioneer

T

he CATS team transports very sick children from local hospitals to the intensive care units, which have the facilities and the expertise to treat them. Doctors, nurses and ambulance technicians with training in retrieval medicine use specially-adapted ambulances, small planes or helicopters to get to these seriously ill children and look after them on their way to intensive care. The team, based at Great Ormond Street Hospital, covers North Thames and East Anglia, but can be called in to deal with transport needs far further afield. It’s a highly skilled, specialised service.

“If a child is sick and likely to need intensive care, they will probably get sick in a hospital without an intensive care unit,” says Dr Daniel Lutman, CATS Consultant and Paediatric Anaesthesia Specialist.

“Intensive care has been centralised in the UK. It’s only delivered in certain places, because it’s difficult to do and get good outcomes.

“The child’s clinicians recognise that the child is becoming sick and they call us.

They may just want advice. But usually they ring us because the child needs to go to the intensive care unit. They may only infrequently encounter such sick children, so they won’t know all the latest fashions in intensive care.

“We then send out a team to the local hospital. They meet the child’s team there, get the child ready, do the things there that can improve the outcome, transfer the child in the back of the ambulance and take them into the intensive care unit. There, hopefully, they will get the best chance of survival and a good outcome.”

The team’s work sounds straightforward – and, in a way, it is. CATS is all about being able to perform simple procedures to a high standard, whether it’s in a local hospital, transferring a patient into the back of an ambulance or a helicopter, or staggering across a muddy field. CATS Advanced Nurse Practitioner (ANP) Mark Clements points out that the team is almost like a pop-up unit. “We are all from an intensive care background, but we have to apply that to a mobile environment, or an alien environment that we’re not used to working in. We are very familiar with our machines. If we can get the child on to our machines and our monitoring, at

“I don’t turn up in a blue light, tell everyone to standback, pull off the shirt and announce that I’m Superman!... We’ll make an assessment of what everybody’s strengths and weaknesses are and try and get a consensus.” least that six-foot-square area around the child becomes familiar to us, whether it’s in an air ambulance, a land ambulance, an Accident and Emergency department or a theatre.” The team’s expertise saw them recently accredited by the Commission of Accreditation of Medical Transport Systems Board, the only service in Europe with this accreditation.

Surprisingly, given the nature of their work, there’s no clamour or sense of urgency at the CATS headquarters. Rather, there’s a quietly efficient hum from the specially trained administrators who answer calls.

Only the siren of a departing ambulance outside breaks the calm. But this smooth running is the result of a vast amount of training, experience and organisation.

What might seem like small decisions – for example, having trained non-medical administrators answering the phones rather than doctors – are actually the result of careful evaluation and discussion.

“In an emergency, medics tend to jump right in and they don’t establish communications. But the first thing you should do is find out who’s calling and how to call them back if the line drops,” says Dr Lutman. “Even the most dramatic

emergency will be managed that way.

We will very promptly bring trained medical personnel on the line to assist, but we always know where and how to get back in touch with those people.”

And CATS ambulances don’t constantly use their sirens and blue lights. Research has shown that travelling in the back of an ambulance on blue light is seven times more dangerous than driving in an ordinary car. Emergency driving is a stressful skill and driver response times decay more quickly in that environment. That’s not ideal when a journey could last for two hours.

Instead, the CATS team uses a system that aims for an appropriate time target for a journey. The blue lights go on only if it looks as if that time isn’t going to be achieved.

Teamwork is a vital part of the service. No one person can do the transfer on his or her own. Each team is commonly made up of a consultant, a nurse and an ambulance technician. An ANP can also take clinical responsibility and go out with another nurse. There are eight nurses and four consultants on the current rotation.

Yet even in such a small team, procedures and organisation are the order of the day.

Pioneer 19

Everyone knows exactly what his or her role is, which tasks have to be done, and when.

“Everyone knows what he or she should be doing next,” says Dr Lutman. And it’s just as important for the CATS team to be able to work with everyone else they come into contact with – specifically, the clinicians who have called them in to help, and the intensive care staff who will be receiving the child.

Dr Allan Goldman, Divisional Director for Critical Care Services at Great Ormond Street Hospital is part of the intensive care unit which receives children from the CATS team. “The CATS team are a vital part of the care we’re able to deliver here at the hospital. Their expertise in transporting critically ill children to our intensive care unit is of salient importance.”

“I don’t turn up in a blue light, tell everyone to stand back, pull off my shirt and announce that I’m Superman!” says Dr Lutman with a smile. “We are all on the same team, and that helps a lot. We’ll

says Clements, “is to let them see exactly what’s going on amid the seemingly chaotic wires and machines.

“Clinicians who come predominantly from an adult background are not used to having parents there,” he points out. “They are often asked to wait outside. But then the CATS team member will say: ‘Come in.

Don’t worry. You’re not in my way’. They feel more calm and have more control over their environment.”

“Anything that you hear about is going to sound worse than what you experience,” adds Dr Lutman. “The reality is much easier to cope with sometimes than not being close to the child while they are so unwell.”

And far from causing more worry, the presence of the CATS team can be immensely reassuring to patients.

“Feedback from parents tells us that when the CATS team arrives, they feel this sense of calm and control,” says

“Clinicians who come predominantly from an adult background are not used to having parents there, ... But then the CATS team member will say: ‘Come in. Don’t worry. You’re not in my way’.” make an assessment of what everybody’s strengths and weaknesses are and try to get a consensus on how we will manage the case. It’s about trying to do what’s right for the child with the team that you’ve got, and making best use of everybody’s skills.”

Communication is at the heart of good teamwork. It’s particularly vital when there are two hospitals and one transport team involved. Once a call to the CATS is made, all communication must then go through them. The team becomes a single point of contact, enabling all three parts of the service to speak to each other about how best to look after the sick child, and ensuring that nobody is left out of this essential loop.

And it’s not just medical professionals who benefit from good communication.

The child’s parents will already have experienced the anxiety of seeing their child fall very ill, and watched as more and more senior people are called in to help to manage that child. Now, they are told that yet another team is on the way. How can the CATS team help them? “A good start,” 20 Pioneer

Clements. “Many are relieved. It means that the child is going to get what they need. So we quickly introduce ourselves, give parents a basic plan of what we’re going to do, let them see what we’re doing and talk them through it. We always have a discussion with them about what our plan is for transfer.”

CATS ambulances are specially adapted to include not just room for specialist intensive care equipment, but also an extra seat for parents, who are always given the option of travelling with their child. Parents are regarded as so important within the service that ambulance technicians are given special training in how to communicate with them. CATS Ambulance Technician and former police officer David Warren not only drives the ambulance but will happily chat to parents while the medical team are working with the child. It’s an essential part of his job. “I can’t discuss the clinical side of things. That’s not my role or my expertise,” he says. “But they ask what the CATS is about. We try to explain and give them a bit of background. We put them at ease as much as we can.”

Many parents don’t want to talk about their child’s illness. “They want to tell you that Johnny’s supposed to be at football practice this afternoon,” says Clements.

“They want to talk about what they know, as everything else is so alien.” And it’s those parents who remember the CATS team years later – in many cases, far better than their children, who are usually unconscious when the transfer takes place.

Both Dr Lutman and Mark Clements say that the high point of their time with the service so far has been the party organised for past patients, which took place last year.

Seeing the long-term results of their work running around and howling with laughter at CBBC stars Dick and Dom was, they say, both humbling and joyful.

“We didn’t recognise the children,” says Clements. “When we last saw them, they had tubes and lines everywhere. Now you see them in their party dresses, getting their faces painted. It’s the parents who tell you the story. It was so interesting to hear how the parents felt and about the angst they went through. When you look at the kids on the surface, they’ve done fantastically well. But some of the parents are still coming to terms with what happened in their child’s life three or four years ago.”

“You forget that this little child doing cartwheels was somebody that was so unbelievably unwell,” says Dr Lutman.

“You may not have rated their chances of survival incredibly highly. But now, here they are, at a party. That’s great to see.”

The CATS team at work

“They respected and understood our shock and fear” – one family’s experience of CATS they turned up, but felt enormously reassured by the way they conducted themselves, as they were so calm and confident.”

It took three-and-a-half hours to transfer Peter from the hospital equipment to the CATS equipment, as he was so unstable.

Richard and Sarah knew that their son Peter would be under the care of Great Ormond Street Hospital before he was born, when a 22 week scan revealed that he had a hole in his heart. But after Peter’s birth in October 2005, it became clear that the problem was much worse. Instead of one hole in his heart, he had four.

Peter had three ventricular septum defects, which are holes in the walls between the left and right ventricle of the heart, and one atrial septum defect – a hole in the wall between the heart’s two upper chambers.

Once in the ambulance, the CATS team, including Albert, the driver, kept talking to his parents. “I remember looking at Peter all the way and watching the monitor to check he was breathing,” says Sarah.

“The team just seemed so calm. During the journey they spoke reassuringly.

It seemed as if they respected and understood our total shock and deepest fear.”

The CATS team stayed with Peter until he was safely transferred to the Paediatric Intensive Care Unit. Then they came to say goodbye to Richard and Sarah. “That was really important for us, you want to be able to say thank you.”

Peter was not fit enough to have the major surgery he needed, so in January he was temporarily fitted with a device called a PA band, which relieves pressure on the heart.

The next month he was well enough to go home, and had his major surgery to repair the holes in his heart in September at Great Ormond Street Hospital.

Peter is now seven. He is, say his parents, a happy, healthy little boy who adores his little brother Matthew, aged two. “Peter loves waving flags at church, go-karting, cooking with Mum, and crafts, and has won awards at football. He remembers words to songs incredibly well. He’s doing really well with reading and maths, and loves both subjects.”

Richard says it’s hard to find the words to thank the CATS team. “I could say thank you over and over again for the next 40 years and it wouldn’t even come close to the amount of gratitude I have for that team.

For a short period of time, they were such a big part of our drama.”

Specialists at Great Ormond Street Hospital decided to operate to repair the holes when Peter was older and more able to stand the surgery. But his condition deteriorated.

“He was wasting away in front of us,” says Richard. In December, Peter was admitted to his local hospital, in his home town of Romford, Essex and fitted with a nasogastric tube. On New Year’s Day, Peter’s condition suddenly worsened.

He accidentally inhaled some milk, which flooded his lungs.

Nurses immediately took Peter to intensive care but his consultant told Richard and Sarah that their son would have to be transferred to Great Ormond Street Hospital straight away, as the local hospital did not have paediatric intensive care facilities.

Two hours later, the CATS team arrived.

“The first thing they asked: ‘Who are the parents?’’’ says Richard. “They explained that Peter would be transferred by special ambulance. I hadn’t heard of CATS until Top left: Peter shortly after arriving at Great Ormond Street Hospital Above: Seven years later, Peter is a budding F1® star Pioneer 21

The team:

Somers Clinical Research Facility The Somers Clinical Research Facility (CRF) provides specialist day care accommodation for children and young people voluntarily taking part in clinical research studies.

Clinical trials, the testing of new medicine and vaccinations, are vital in the translation of scientific developments into new clinical treatments. Since opening in December 2008, more than 5,000 research appointments have taken place in the Somers Clinical Research Facility Katie Rees Clinical Research Facility Research Sister, since 2009 • As CRF Research Sister, I lead, motivate and educate a team of research nurses in their co-ordination and implementation of research studies. I make sure that patient safety is always upheld, and that the nursing team follow research protocols and adhere to research regulations.

• The Somers Clinical Research Facility is a dedicated research unit, designed specifically for this purpose, and so it maximises research being done at Great Ormond Street Hospital.

• We co-ordinate a range of complex trials covering lots of specialties, and we provide a high-quality clinical environment in which children and young people can take part in the research. We are making a huge contribution to research and have received positive feedback from participants and their families about their experience at the CRF. 22 Pioneer

• A lot of the trials we conduct run over three or four years, so we’re starting to see real results of our work now. For example, we did research into a drug for children with juvenile arthritis, which has now been licensed and gone national, and so will be more readily available in local hospitals, making a huge difference to children.

• I really feel that communication is the key to both successful research and to good teamwork. For good research, you need to aim for high-quality data, which relies on effective communications between the nursing team and the data team. It’s vital that everyone feels part of the team, and recognises how important all the individual roles are in achieving a high standard of research.

A time at Great Ormond Street Hospital that I’ll never forget is when my daughter was an inpatient last summer, after having been diagnosed with leukaemia

Eleanor Rolle-Marshall Medicines for Children Research Network (MCRN) London and South East Portfolio Manager, since 2010 • I joined Great Ormond Street Hospital because I liked the idea of working in research for children. My role is monitoring the performance of MCRN studies and, in particular, I co-ordinate feasibility and keep an eye on how studies are recruiting to targets and timelines. The MCRN works as a team with the CRF and Research and Development to ensure that research projects are delivered successfully, so we can improve treatment and outcomes for patients.

• The Somers Clinical Research Facility is a wonderful environment for patients and families who sacrifice their own time to take part in research and help the cause. The fact that they don’t have to take part, but make the choice to do so, makes it more special. I think it’s a lovely

Kate Ryan

environment for patients, and it’s very satisfying for the team to know that we are continuously improving our service in research.

• A time at Great Ormond Street Hospital that I’ll never forget is when my daughter was an inpatient last summer, after having been diagnosed with leukaemia. All my colleagues were coming up to see me every day and I really appreciated that. If I hadn’t worked in the hospital, it wouldn’t have been as easy for me to get through such a difficult time. It also allowed me to see the hospital from a different perspective, and consequently increased my passion for my job. My daughter is now an outpatient and still comes in for appointments, but is doing really well.

The CRF is important because it was set up to be a purpose-built unit dedicated to research, so they were able to put in everything that they wanted

Associate Laboratory Practitioner, since 2012 • We have our own preparatory laboratory here in the CRF, so my role is processing the samples that the nurses take from the patients for all the different studies. A lot of the samples that are processed in our laboratory are stored here for the duration of the study. This gives peace of mind to managers, as they know that there are dedicated staff overseeing their samples.

• I’m a trained medical laboratory scientist and before I came to Great Ormond Street Hospital, I worked in Australia, in diagnostics. I did a little bit of research and enjoyed that part of the job. When I moved to London, I was drawn to this role because of the hospital’s outstanding reputation.

• The CRF is important because it was set up to be a purpose-built unit dedicated to research, so they were able to put in everything that they wanted. It’s really important to have all the facilities and the dedicated specialist staff that we have.

We have our own pharmacist, nurses and managers. They put in a laboratory so that when people want to set up studies, they are likely to pick here because everything is done in one place, and we have specialist staff.

• There’s great team camaraderie here.

For a while, I was the only person in the laboratory, and when I would go on annual leave, the nurses and other staff would rally around and cover parts of my job that they weren’t used to doing. They did a brilliant job.

Pioneer 23

Debbie Holder Research Practitioner, since 2012 • As a research practitioner, part of my role is similar to that of the research nurse – for example, co-ordinating the studies and collecting samples from clinics – but I’m not qualified to do the clinical aspects as I am an occupational therapist by background. A lot of our studies have questionnaires, and I help to carry them out and get feedback from the participants.

• I help to run a young person’s advisory group one Saturday every six to eight weeks. The group is formed of young people who are interested in or who have participated in research. In the past they have helped researchers during study set-up by giving feedback on patient information sheets and to see if they were suitable for the population they were looking for.

• I think what makes us a successful team is knowing and understanding each other’s roles as well as our own, and knowing what part we can play.

Also, everyone has their own unique strengths, and we all have a common goal. I think that’s really important.

• My fondest memory of Great Ormond Street Hospital so far was when, just before Christmas, I was looking after a child all day and taking him to various places to have tests, and in his lunchtime he made me a little Christmas card to say thank you. That was really sweet, very touching, and something that wouldn’t happen in many jobs.

The CRF is vital to Great Ormond Street Hospital because research is the way to improve care, diagnosis and treatments

Dr William van’t Hoff Consultant Paediatric Nephrologist and Head of the Clinical Research Facility, since 1992 • The CRF is vital to Great Ormond Street Hospital because research is the way to improve care, diagnosis and treatments, and that’s core to the work that we are doing in the NHS. But research can’t be undertaken in the busy clinical wards – it needs its own space and time, and specifically trained staff. We also have a facility, a team and processes that recognise the voluntary nature of research – that families and patients give up their time to participate.

• Teamwork is essential to supporting over 70 studies in lots of different disciplines. A couple of years ago, we had to respond to an important flu vaccine study that was being developed in response to the H1N1 pandemic. We trained our team in vaccine research, and were able to help with a rapid, multicentre study, which led to the licensing of a 24 Pioneer

vaccine for children for H1N1. It’s that ability of a team to respond quickly and develop new skills to a high standard that shows that we have a great team.

• My most important memory working in the hospital was when a child aged six said he wanted to call me by my first name, and was that OK? For me it was a sign that he had accepted his illness and was ready to work with us to get better.

• Something amusing – well, about 10 years ago, I was involved in a lifethreatening emergency in the middle of the night and had to help in theatre.

There was no men’s theatre wear, so I worked the night in a theatre nurse’s dress. I hope no-one noticed, but there were more important matters to deal with, the patient did well, but I haven’t been asked back to theatres since!

Sze Mun Tan Clinical Trials Pharmacist, since 2012 • The thing I like most about my job is knowing that I play a role in the development of new therapies and treatment for children, ensuring that they are safe and clinically effective. The best part about working with the CRF team is that every one of us, no matter who we are and what we do, all strive to make positive contributions towards the development of safer medicines for children.

• The biggest challenge for me is keeping up with the pace. We are getting a lot of new studies coming through, for example studies funded by the pharmaceutical industry and studies that are sponsored

by Great Ormond Street Hospital Children’s Charity. As the CRF expands, our responsibilities will undoubtedly increase, and the challenge is for everyone to maintain the high-quality service we provide for our stakeholders.

• Recently I bumped into the parents of one of the children we see at the CRF, and they took the time to enquire about my day. They weren’t at the hospital for a research study, but were kind enough to take the time to say hello. I guess it’s a reflection of the rapport we have with our volunteers in the CRF. I thought that was really nice and it put a smile on my face.

Chloe Davies Play Worker, training to be Play Specialist, since 2010 • My role is to provide activities for the children when they are here, to set up the play area so that when they come in, it is inviting and stimulating. Most are here for the whole day, so we keep them occupied with arts and crafts and games, and we aim to further their development.

• It’s important to remember that children don’t have to come to the CRF – it’s voluntary for them and their families. They are giving a lot

of their time – some of them come once a week for a whole day. Some of them won’t see the benefits of the drugs themselves but they know they are helping others in the future. So it’s vital to try to make it really enjoyable and fun while they are here.

• It’s really touching when the children make you things and do pictures for you – especially when they do stuff at home and bring it in.

We work as a team to align our processes, so that approval for the research studies can happen as soon as possible

Vanshree Patel Senior Industry Manager, since 2002 • As Senior Industry Manager, I set up all commercial research activity taking place at Great Ormond Street Hospital and the UCL Institute of Child Health. I inform commercial companies about our research capabilities and provide opportunities for transferring technology. Primarily, I set up contracts and agreements with commercial partners who want to conduct research with our researchers. Most studies are clinical trials, so contracts are with pharmaceutical companies, but we do have other studies with commercial partners that are more collaborative.

• We work as a team to align our processes, so that approval for the research studies can happen as soon as possible. A key ingredient is communication – we’ve got to be able to talk to each other about what we’re doing and how we’re doing it, and find out if there’s any way the team members can help to speed things up and keep our commercial partners happy. The best way to approach this is to have a meeting as soon as we know about a study – to have discussions with the clinical team and the CRF team.

Pioneer 25

A parent’s perspective:

I

Everything was in place, but then my son Milan started saying to me: “Mummy, I’ve got a tummy ache.” I thought nothing of it as kids have tummy aches all the time, but at a birthday party for his sister in November 2010, he was in so much pain. My husband Lall took him to our local Accident and Emergency. They said he might be a little bit constipated. This went on for some time until eventually the pain got worse. We were admitted for tests and they discovered Milan had a tumour. That’s when they referred us to Great Ormond Street Hospital.

Being a mother, I feared the worst and thought it was cancer, but it didn’t seem like anything serious according to the X-ray, which I saw with the doctor. However, one day while Milan was having tests, I popped across town to work while my husband stayed with him. Almost before I’d sat at my desk my husband called asking me to come back. When I saw my husband, he looked different. He took me into a side room to tell me Milan had got a form of cancer. I’ve never seen my husband cry before but as he broke the news to me, he started. It was a terrible moment but after his diagnosis of Burkitt’s lymphoma in February 2011, our journey started.

Milan started chemotherapy, but after his first dose the doctors said his body wasn’t reacting as well as they’d hoped and the treatment would take six to eight months, instead of the planned four. Throughout that time I lived at the hospital five days a week and my husband took over at the weekend. During this time I didn’t work, so I didn’t get paid. Money comes and goes but our child is so much more

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Throughout the six months that Milan was in hospital I came to appreciate the little things. You’re emotionally tired from watching your child in pain. Elephant Ward, on which we stayed, was like a hotel with an en suite bathroom, a parent’s bed and lots of other facilities.

Not having to think about queuing for a shower in the morning, or spending a sleepless night on a chair, really does make a difference. All the staff were wonderful too, from the nurses to the consultants. Milan’s consultant was called Dr Phillip Ancliff but Milan named him Phil O’Fish. Dr Ancliff said he didn’t mind if it made Milan smile. It’s these little things that count.

n 2010, I had the perfect family. I had a loving husband, a daughter and a son, was working part-time managing a dental practice, which I loved, and had a good balance of home and working life.

important to us. Financially, we have struggled, but it was never a consideration that we would not be there for our child.

At the same time as caring for Milan, we had to look after our six-year-old daughter, Maya. During this period she spent a great deal of time at her grandparents’ and auntie’s house, which she enjoyed but she’d visit Milan as often as she could as she’s very close to him. However, after a while she stopped agreeing to visit. I asked why and she said: “I might catch it. You know, like when he’s got germs.” It was heartbreaking to think that was what she thought. I then explained to her you can’t catch it. It’s not like a cold or flu, it’s inside – and if you could catch it, I wouldn’t be near him either because I wouldn’t want it.

I think she thought: “She’s telling the truth because she wouldn’t want to get it either.”

So she went with me to the hospital and she was fine with him again.

It was a really hard time for the whole family. Maya began wetting the bed as she was anxious that Milan and Mummy were going to go away. It was only after we sat down with her and explained that we were only at the hospital for a limited time, not for ever, that she perked up.

During his chemotherapy, the tumour started shrinking, but by this time Milan had lost his hair. I don’t think he realised for quite a while and a couple of times he asked me if I had combed his hair. He had zero hair, but he could still say to Mummy: “Have you combed my hair?” And I said: “Yes I have.” The last few strands, literally five strands of hair, fell out into my hand when I was doing his plait and I have still got the hair. I don’t know why I have kept it, but I have.

In August 2011, his tumour cleared completely and he was looking forward to his leaving party – it was all he wanted.

It was just a few biscuits and drinks in the playroom with balloons, but to them it’s the end of that treatment, an end of an era for them, something really important.

Since he left the hospital, Milan’s started school and made some good friends.

He does talk about when he was unwell, but never in a bad way. He always sees the positive. We still go back to the hospital for the aftercare and even now he is made to feel special. I don’t remember the nurses’ names, but they remember his name. And that shows they remember the child and that the child is the most important thing.

my little boy

Harpreet and Milan at home in Hornchurch

Great Ormond Street Hospital Children’s Charity 40 Bernard Street London WC1N 1LE 020 7239 3000 www.gosh.org Great Ormond Street Hospital Children’s Charity.

Registered charity no. 235825.

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