Pioneer Magazine, Autumn/winter 2012, issue 2

Pioneer Autumn/winter 2012–13

The greatest show on earth The hospital’s pride as it features in Danny Boyle’s London 2012 Olympic opening extravaganza

The child first andPioneer always 1

Contents Welcome to the second edition of Pioneer, designed to keep you updated with the fantastic work that takes place at Great Ormond Street Hospital.

Ready to light up the Olympic opening ceremony

Professor Smyth, the new Director of the UCL Institute of Child Health

While the main work of the hospital is, and always will be, to deliver world-class paediatric care, it was with great pride that the hospital took part in the opening ceremony of the Olympic Games. It was thrilling to see the hospital recognised in such a way and for some of our patients and staff, who can be seen pictured left before they set off for the ceremony, feature in such a global and historic event.

A new chapter is starting, with both a new Chief Executive of the hospital and Director of the UCL Institute of Child Health (ICH) arriving within the next month. Indeed, you can read an interview with Professor Smyth (left), the new Director of the ICH, in this edition of Pioneer. However, while the personnel may change, our commitment to keep ‘the child first and always’ remains as strong as ever. As such, inside the magazine, you’ll hear from people that live and work in the hospital on a daily basis – children, their families and staff – who describe in their own words what Great Ormond Street Hospital means to them. I do hope you enjoy reading their inspirational stories.

04 Around the hospital

14 Feature: the Clinical Ethics Committee

Latest updates including the announcement of the hospital’s new Chief Executive, regional service reviews, and the opening of the Morgan Stanley Clinical Building

A detailed look at the committee that the doctors of Great Ormond Street Hospital turn to when they wish to discuss a complicated case or experimental treatment

06 The Pioneer interview: Professor Rosalind Smyth

18 The team: Robin Ward

A Q&A with the incoming Director of the UCL Institute of Child Health about the importance of paediatric research

An in-depth look at the people and personalities who work on a ward with unique challenges

09 Me and my teacher

22 About face

Three young patients introduce us to the teachers that help them keep on top of their school work while in the hospital

Pioneer profiles the work of Owase Jeelani and his revolutionary craniofacial surgery

10 I have MMA

25 Expanding our horizons

Oliver has a rare disease that prevents his body from digesting protein. He tells Pioneer that he won’t let it get him down

A look at the hospital’s relationship with Kuwait after the recent government initiative for NHS expansion overseas

13 Why I support the charity: Debra Reuben

26 A parent’s perspective: me and my boy

The Director of the Reuben Foundation explains how she first became involved with the hospital

10

Trevor describes how he and his family have coped with his son Ellis’ kidney problems

18

26

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

02 Pioneer

Pioneer 03

Around the hospital…

Expansion of specialist brain surgery and epilepsy assessment Great Ormond Street Hospital’s medical staff have welcomed the expansion of specialist treatment services across the country for children suffering with drug-resistant epilepsy.

Great Ormond Street Hospital is presently the UK’s main centre for highly specialised brain surgery used as treatment for epilepsy sufferers. An NHS announcement means that from November, existing services will be developed in Bristol, Manchester/Liverpool and Birmingham, enabling doctors to treat three times as many patients as they currently do – benefiting up to 300 more children a year.

New Chief Executive appointed Jan Filochowski has been appointed as Chief Executive of Great Ormond Street Hospital NHS Foundation Trust.

The opening of the Morgan Stanley Clinical Building In June 2012, the hospital’s redevelopment programme reached a key milestone with the opening of the Morgan Stanley Clinical Building (MSCB). The new building will offer better facilities for families and a superior working environment for staff, both of which will make a significant contribution to delivering world-class care for children.

The MSCB will make a significant contribution to delivering world-class care for children.

The new building, which forms the first part of the Mittal Children’s Medical Centre, includes the British Kidney Patient Association Children’s Kidney Centre, JN and Phyllis Somers Neurosciences Centre, Wolfson Heart and Lung Centre, state-ofthe-art operating theatres for cardiac or neurosurgery, and new diagnostic facilities.

04 Pioneer

Wards have more space and en suite bathrooms providing additional privacy and comfort for patients and their families.

There is also a new restaurant for staff and families, as well as a new play area.

Gold medal-winning former Olympians Lord Sebastian Coe, Duncan Goodhew, Sally Gunnell, and Paralympian Baroness Tanni Grey-Thompson, helped open the building and were joined by charity patron Tess Daly and patients who have also enjoyed sporting success at the British and World Transplant Games.

Lord Coe said: “Great Ormond Street Hospital is recognised internationally as a centre of excellence, and the clinical and surgical teams are among the best in the world. Every day they strive for excellence, but just like the best sportsmen and women, they need the best equipment and best facilities if they are to reach their full potential.”

Mr Filochowski has held chief executive positions at five different NHS organisations over the last 20 years. For the past five years, he has led West Hertfordshire Hospitals NHS Trust to become one of the most successful trusts in the country. He has 37 years’ healthcare experience, starting with 10 years in the Department of Health followed by 27 years in the NHS. He spent a year as a visiting fellow at Harvard University in 1997/98 and a further year part-time as NHS University Fellow at the Judge Business School, Cambridge University in 2004/05.

Mr Filochowski said: “Great Ormond Street Hospital is one of the world’s leading children’s hospitals and it is a great privilege to be invited to become its Chief Executive. The world-class clinical care, pioneering research and education for which the hospital is renowned is something we can all be proud of. I’m looking forward to working with the talented and dedicated teams at the hospital.”

Epilepsy affects around 600,000 people in the UK. However, about one-third of patients do not respond to medication and, for many, brain surgery can be highly effective, leading to seizure freedom in up to 80 per cent of cases.

Professor Helen Cross, The Prince of Wales’ Chair of Childhood Epilepsy, said: “Epilepsy surgery allows us to remove or modify part of the brain. Having four expert services across the country will enable us to make this surgery available to far more children, as well as reduce current waiting times for assessment for possible surgery.”

She added: “Having this type of procedure can make a huge difference. Many children are completely seizure free after their operation and go on to lead more normal lives.”

Cardiac surgery, Safe and Sustainable Review Great Ormond Street Hospital has been chosen as one of a select group of specialist centres to provide children’s cardiac surgery following an NHS streamlining of services. The Safe and Sustainable Joint Committee of Primary Care Trusts introduced the changes to create fewer, larger centres carrying out cardiac surgery with the aim of bringing better outcomes for patients, and with local centres continuing to provide follow-up appointments close to the patients’ homes.

Great Ormond Street Hospital is expected to work together with London’s other designated centre, the Evelina Children’s Hospital at Guys and St Thomas’, and hopes to work closely with clinical staff at The Royal Brompton Hospital.

cardiac surgery. It has five paediatric cardiac surgeons on site and carries out more than 600 cardiac surgical procedures each year. In June, the hospital opened its new Wolfson Heart and Lung Centre to provide increased capacity and a muchimproved environment for patients, families and staff.

The centre contains a new Cardiac Intensive Care Unit with 21 beds (an increase of 30 per cent on the previous ward), a cardiac general ward with 24 beds (four more than before), a cardiac day care centre, a clinical investigations unit, and three new state-of-the-art operating theatres have been installed for cardiac and neurosurgery. All of this comes with more space and comfort for patients, families and staff.

Great Ormond Street Hospital is already the largest centre in the UK for children’s

2012 Olympics honour for Great Ormond Street Hospital An estimated audience of over a billion people worldwide watched as Great Ormond Street Hospital took its place in the colourful spectacle of the London 2012 opening ceremony in July.

Part way through the event, directed by film maker Danny Boyle and titled Isles of Wonder, a tribute was made to the NHS, with a particular section focusing on Great Ormond Street Hospital. Hundreds of dancers formed the charity’s logo with illuminated beds, before the stadium filled

with characters from children’s literature.

Harry Potter author JK Rowling appeared, reading from JM Barrie’s Peter Pan, a story with its own special connection to the hospital.

For the families gathered at the hospital, the standout part of the ceremony was when nine Great Ormond Street Hospital patients and several members of hospital staff appeared on the stadium’s ‘green hills’.

The parents agreed it was an incredibly special moment: “I felt privileged and so

proud to see my beautiful girl, Niamh, up there representing herself and this special hospital,” said mum Siobhan.

Jane Collins, Great Ormond Street Hospital former Chief Executive, said: “We are so grateful to Danny Boyle and his incredible team for inviting the hospital to be involved in the opening ceremony for London 2012.

It is a wonderful honour to be part of such a historic event for London and for the whole of the country.”

Pioneer 05

The Pioneer interview Professor Rosalind Smyth, the new Director of the UCL Institute of Child Health, talks to Pioneer

How did you get into paediatric research?

I started out as a clinician wanting to make things better for children. It was during this training, when you’re encouraged to do research, that I became really interested and it wasn’t long before I realised that it was a very important way in which to make things better for children’s health.

Can you talk us through your research background and the successes you’ve contributed to?

I was a paediatric trainee in London working at Westminster Children’s Hospital and then I moved up to East Anglia and was a Clinical Research Fellow in Cambridge in heart/lung transplantation. At the time, transplantation was just starting to become a treatment for children with cystic fibrosis.

I was attached to Papworth Hospital, which was an adult hospital, but because I was working in clinical research, there was a big interest in older children and young adults.

Initially, all the transplants were done in Papworth but then Professor Marc de Leval moved everything to Great Ormond Street Hospital. It was a very exciting time to be in heart/lung transplantation.

My expertise is in cystic fibrosis and respiratory infections. Having been a Fellow in the most successful heart/lung transplant programme in the world, as it was then, I received a lot of interest when presenting at conferences because my peers wanted to know why the results at Papworth were so good. From that, I became known in the cystic fibrosis world as somebody who had a good understanding of transplantation, and that was of interest because this was a new treatment.

After I came to the University of Liverpool, we observed in children a pretty awful complication where a lot of them were getting strictures in their colon which needed surgery. We proposed that this complication was related to a new formulation of pancreatic enzyme therapy that had just been introduced 9–12 months earlier. This was quite a contentious hypothesis in terms of the companies that produce these enzymes, but I led a national epidemiology study which investigated and confirmed the link. As a result, there was regulatory action and the problem disappeared from the UK. What is the Medicines for Children Research Network (MCRN) and how did you become its Director?

As a direct consequence of my reporting of a very serious adverse reaction to a drug, I became involved in drug regulation

06 Pioneer

in an advisory capacity. I became a member and quite soon afterwards, the chair of the group that is now called the Paediatrics Experts Advisory Group of the Commission of Human Medicines.

New regulation completely transformed the way that medicines are evaluated for use in children. Now, if pharmaceutical companies want to develop a product for use in Europe, for any age group, they have to present a paediatric investigation plan and study that product in children of all relevant ages and all relevant conditions. Previously, drugs were developed for adults and if they weren’t commercially viable to develop in children, they were still used despite not having been properly assessed for that age group.

The MCRN was a pretty direct consequence of this regulation coming in to law, as it became apparent that there was a need to

management of pain, immobility, and how we can develop studies, will help us to answer important questions.

What do you think some of the biggest challenges for involving children in research are currently?

The biggest challenges are not the ones people may think. Children are very willing to be involved in research; they’re altruistic and want to help others. Parents are usually happy to have their children involved in the research although naturally a bit more cautious. Actually, the barrier is often clinicians not wanting to over-burden their patients and being quite protective.

We have published a piece of work to try to convince clinicians that they should ask their families and then leave it up to them to decide on the basis of the information.

“…a real opportunity for leadership and to develop partnerships, to develop satellite arrangements, and to make sure that child health research nationally becomes much more prominent and that the UCL Institute of Child Health is in a real leadership role.” have a research infrastructure to support and assess the safety of children’s medicines.

The Department of Health issued a call for the tender to be the co-ordinating centre for the MCRN and, on behalf of the University of Liverpool, I led the bid and was successful in doing so.

As Director, how did you encourage an environment where the public became engaged with and participated with paediatric research?

Firstly, we had to tackle the adverse publicity around involving children in research. Right from the very outset, we made clear we wanted to involve children and families at every stage in the research process. That goes from identifying what the important questions are, through to looking at how studies are designed, how they’re conducted and then how the results are interpreted and disseminated and put into practice. Families should be involved at every stage.

I could give you dozens of examples but our most extensive experience is in setting research priorities and hearing what the real breakthroughs are that parents and children want to see that would make a difference to the management of their disease. For example, in terms of paediatric rheumatology, hearing what families have to say about

Clearly, there are things that are more difficult to address such as the fact that many diseases are quite rare and you don’t have many children who are potentially eligible to take part. In the case of rare diseases having centralised services, places like Great Ormond Street Hospital, where you can recruit a number of children who are all being treated with the same condition, can help overcome this challenge.

Professor Rosalind Smyth In October, Professor Rosalind Smyth begins her new job as Director of the UCL Institute of Child Health. Currently Professor of Paediatric Medicine at the University of Liverpool and one of the UK’s foremost paediatric researchers, she acts as Director of the National Institute for Health Research Medicines for Children Research Network, a £20 million initiative set up to improve and develop medicines specifically for use in children. Her research activities are centred in this area, and she is committed to rigorous scientific studies for childhood respiratory disease, specialising in asthma, cystic fibrosis and bronchiolitis.

Pioneer 07

What are some of the big bottlenecks in terms of translating research into treatment?

Traditionally, the model has been that we need to do things first in adults, and then, when we’ve demonstrated safety and efficacy in adults, we move to children.

However, there are a lot of diseases that either only occur in children or, if we don’t get the interventions in children, then things deteriorate so much that life expectancy or health is much reduced in adults. So there are many reasons why we need to do studies in children at the same time as in adults, or only in children. There are many very talented researchers doing exactly what I’m describing, but that has been a bottleneck in the past, and I’ve wanted to make their lives easier.

Partnerships with industry haven’t always been forthcoming as they haven’t been commercially attractive. What are some of the challenges there?

Having been director of the MCRN, one of the things I’m bringing to this role is my experience of working with industry.

From this, I’ve gained a much better understanding of how industry works and what the drivers are. At the MCRN, we began to work proactively with pharmaceutical companies who were faced with new regulation. They were having to develop paediatric investigation plans to be done with children, and many of them had very little experience of developing studies in the paediatric age group. We were able to offer them expertise in how to do that and, in turn, we were able to make sure that their study plans were appropriate for children.

To what extent have you been involved in advocating the role of good research to policy makers or NHS institutions?

Constantly! I constantly beat the drum, whether it is within NHS organisations or any other arena that I work in. For example, I’ve worked very hard with Alder Hey Children’s Hospital to try to emphasise how important it is that we ask questions about what makes a difference to care and we evaluate everything properly rather than taking anything as perceived wisdom. We need to constantly question and test what we do.

What attracted you to the role of Director of the UCL Institute of Child Health (ICH) and the Institute itself?

It is the premier academic children’s medical centre in the UK. I felt I contributed

08 Pioneer

a lot in Liverpool in establishing a very fine department of paediatrics, establishing my own research programme and setting up and establishing the MCRN. I was keen to do something more so when the opportunity came up, I leapt at it.

What’s your vision for the ICH? It’s achieved a huge amount and it is head and shoulders above anywhere comparable in the UK, both in size and quality. But it’s not unequivocally at the very top in the world and that’s where I think it needs to be, and where it can and should be.

How do you see the benefits of the ICH being linked to Great Ormond Street Hospital?

The link is clearly critically important to both and it works very well from what I’ve been able to see and from what I’ve been told. I think it’s my job to make sure those excellent relationships continue and are used to best effect to take the Institute into an even greater level of achievement. It’s a question of not trying to fix something that isn’t broken, because it clearly isn’t, but it’s focusing on how we can use that strength to do even better than it has been in the past.

“I’m going to have at least one day a week dedicated to my own research in bronchiolitis.

Also, I’m going to do some clinical work within the respiratory service, predominantly in cystic fibrosis in the hospital. I think it’s important that I continue to see patients and have a clinical role even though it would be a small one.”

Secondly, within the UK, there are many deans of medical schools and vice-principals of universities that are recognising the latent potential of child health research. That’s not a threat but a real opportunity for leadership and to develop partnerships, to develop satellite arrangements, and to make sure that child health research nationally becomes much more prominent and that the ICH is in a real leadership role.

What’s the importance of philanthropy and charitable funding in terms of research?

It’s absolutely critical. If you haven’t got any research funding then you can’t do any studies and you can’t make any progress. I put a very high value on it indeed. I’ve worked very closely with fundraising locally and I’m very keen and interested to do the same in my new role.

Thirdly, while I think the focus on rare diseases is extremely important, I also think that there’s a need, in an era when children born today may well have a lower life expectancy than their parents, to start to really develop the agenda around addressing that and the reasons for it and what might be done to prevent further erosion of life expectancy, because what happens in the early years is extremely important.

How do you plan on becoming fully immersed in the work at Great Ormond Street Hospital and the ICH? I’m going to have at least one day a week dedicated to my own research in bronchiolitis.

Also, I’m going to do some clinical work within the respiratory service, predominantly in cystic fibrosis in the hospital. I think it’s important that I continue to see patients and have a clinical role even though it would be a small one. I’m going to be a non-executive director on the hospital’s Foundation Trust Board and I’m looking forward to that and becoming involved in the work of the Trust.

Finally, there’s a huge range of research across methodologies, from very basic science, right the way through to epidemiology and public health research and I think that there needs to be a really strong connection between those disciplines. For example, observations of a patient in a clinical study could raise questions that geneticists could answer in their labs. And I don’t think the potential for this kind of ‘reverse translation’ has been fully exploited.

Finally, it’s a big move for your family from Liverpool to London.

Are you looking forward to it?

Very! I have lived in London before, it’s where I met my husband, so I know what the city has to offer. Now that both my children are at university themselves, it feels like the right time to take on this great challenge.

Me and my…

L ouise, Elep hant Ward Year :

As well as receiving world-class clinical care at the hospital, children gain an outstanding education through The Children’s Hospital School at Great Ormond Street and University College Hospital, funded by the Department of Education.

Here, three children introduce themselves and their teachers

4 Teacher: A nthea Favourite less on: Maths Best friends: Chloe and Sim ay Interesting fa ct : “I recently went to the Dis Brave premiere ney Pixar at Great Ormon d Street Hospi Future: “I wan tal.” t to be a teache r when I’m olde r.”

Nellie, Penguin Ward Year : 1 Teacher: Rachael as grandad’s Favourite lessons: Art and science – “I like art sions.” explo friend is an artist and I like science as we do Best friends: Chloe and Danielle chef prepares stuff specially.

Interesting fact: “I have a lot of allergies so the lf, and cucumber.” myse to all it have to I love salad cream and am able a library.” own or , older I’m when ler Future: “I want to be a travel

le Ward g a E , a i b a R a

cher: Bianc Year: 2 Tea n technology on: Informatio ss le te ri u o Fav , Zane od is cheese Best friend: y favourite fo “M : ct fa g Interestin ones.” but not smelly Pioneer 09 9

I have MMA

“It’s a disorder where the body isn’t able to process protein properly… If I ate a normal diet, I would be getting too much protein, which would start sending toxins round my body.”

Sixteen-year-old Oliver has been coming to Great Ormond Street Hospital since he was 12 months old. He tells Pioneer why

I

have never known what it’s like to live without MMA (methylmalonic acidemia).

Mum told me that for the first seven months after I was born, I wasn’t really doing well. I was vomiting a lot and went into hospital for tests. It was thought I might be a bit refluxy and would grow out of it.

It seemed to settle down, but we now know that was only because I was weaned off formula and breast milk and went on to vegetable things, so my diet became lower in protein.

When I was 12 months old, I had tonsillitis, didn’t eat much and became very ill. I started to vomit, got very tired and was breathing really quickly, so I was taken into Reading Hospital and then rushed to London. Mum says the person who was dealing with me from Great Ormond Street Hospital was fantastic. It was Dr Jane Collins, who until recently was the Chief Executive. Back then, she was our consultant for the first four years.

We’re totally indebted to her, she was brilliant.

10 Pioneer

MMA is very rare. There is no cure but the doctors are getting better at managing it. Previously, there was little knowledge in terms of management, so there aren’t very many old people with it. It’s a disorder where the body isn’t able to process protein properly, which means I have a low protein diet and take lots of medication, vitamins and mineral supplements. If I ate a normal diet, I would be getting too much protein, which would start sending toxins round my body.

Most children with my condition hardly eat. They have a tube going into their stomach to give them food. Although I have a healthy appetite, I can only have a very narrow range of foods. They tend to be prescription products and my mum says it’s a bit like being on a Weight Watchers diet, or something like that. You learn the protein values in certain foods and I’m now in a transitional phase where I’m learning to count so I can manage it myself without my parents having to watch over me as much.

Pioneer 11

If I become unwell with a viral infection or a cough or cold, I immediately start to vomit.

This means I can’t tolerate anything, and that’s when I’m most at risk of becoming metabolically unstable as my body starts to draw on my protein reserves. To confuse my body into not doing that, I have to drink a carbohydrate solution, which is difficult to do if you’re vomiting. I usually end up going to hospital to have intravenous fluids. I just sit there until the thing starts to pass and then they gently get me back to my protein allowance. I can cope with your average bug, but beyond that I don’t know.

Although my body can’t tolerate too much protein, I still need enough to grow, and all that’s done by going to Great Ormond Street Hospital every four to six months for check-ups. I wouldn’t be alive if it wasn’t for them. When we visit we make a day of it, seeing the kidney team, the metabolic team and then we meet with the dietician. They look at my blood and amino acids to see if they’re stable and then they’ll increase the protein to fit in with what I need to grow normally.

“You try to make the most of what you have got rather than knowing there are a lot of things you can’t do.

I struggle academically despite working really hard at school. But equally, I find music really easy.”

You do have a lot of limitations when you’ve got MMA, but as a result of having limitations, you try and achieve what you can within that. You try to make the most of what you have got rather than knowing there are a lot of things you can’t do. I struggle academically despite working really hard at school. But equally, I find music really easy.

I’m working towards my Grade 7 piano, Grade 5 trombone, and I’m a member

of my school, church and local orchestra.

I even sang at the Royal Albert Hall earlier this year. I love music and want to pursue a career in it.

In all, I try to be as positive as I can because I know MMA’s going to last me for the rest of my life. So I just try to be as positive as I can.

Obviously it’s all quite restrictive and that’s a problem for school trips and things. You’ve got to notify local hospitals in advance and normally get Great Ormond Street Hospital to fax my regimes and things through so I can get treatment quickly if needed. I can’t go on school trips abroad – it would be too difficult for the school. Also, I take packed lunches to school, and when we go to restaurants, Mum has to phone ahead to explain. When we go on holiday, we have to take a load of food with us, so I can’t stay in a hotel. It does restrict the type of holiday we go on.

12 Pioneer

By Debra Reuben, Director of the Reuben Foundation

T

he Reuben Foundation has been a supporter of Great Ormond Street Hospital for about 10 years. I personally decided to support the hospital after I visited on a couple of occasions with my children when they were growing up. They were outpatients. We went to consultations and I was very impressed and taken with the hospital, and I also had a few friends and acquaintances with children who were inpatients. I remember being filled with a lot of hope, knowing I was going to get the best possible advice and that the problems I was having with my children would be resolved.

So I have had quite a long contact with the hospital and had even worked with the charity myself. But the Foundation came to support the hospital more directly by sponsoring the new oncology centre after I heard how much one was needed.

Great Ormond Street Hospital Children’s Charity needed to raise £2 million and after speaking to the Foundation’s trustees, they immediately agreed it was an important project to support. So we did. And being a cancer survivor myself, I feel a great deal of gratitude that I have survived. So from my own point of view, cancer certainly is the area of special interest for me.

My family cope really well. They couldn’t do anything better to adapt, they’re incredible.

But MMA really isn’t as bad as you might read on the internet. I’ve been to the British Grand Prix. I’d always said to Mum and Dad that I really wanted to see a Formula 1™ race, and when we came to Great Ormond Street Hospital someone showed us a poster. We filled out an application form and I got selected. I was over the moon. We went on a garage tour and I met drivers Sebastian Vettel and Mark Webber. It was fantastic.

I’ve got an autistic spectrum disorder as part of the condition, which leaves me with some learning difficulties. However, I try and take the positives from the situation. For example, this means I’ve got a statement to avoid queuing when I visit theme parks, so I can go on rides straight away. It’s a perk.

Why I support the charity

Oliver met many of the drivers when he recently attended the 2012 Formula 1 British Grand Prix at Silverstone, including the eventual winner Mark Webber

We visited the new centre when it opened and I have visited it a few times since then.

It’s very lively and pleasant, very positive and upbeat and it just makes me feel very, very happy that we now have such brilliant new facilities, even though you do feel sad about the children who are sick. It’s always very difficult to see any child who is unwell and particularly children who are fighting for their lives and who have unfortunately developed cancer. We all want to see children who look happy, playing in parks, attending school and not spending time on oncology wards. However, so many inroads have been made in many areas of children’s cancers that I am hopeful.

“I remember being filled with a lot of hope, knowing I was going to get the best possible advice…”

For me, Great Ormond Street Hospital gives people hope.

But my work with Great Ormond Street Hospital doesn’t end there. I was also on the committee for the Dickens Ball, which I found extremely rewarding. All of us on the event committee found giving our time wonderful and we were delighted to raise in the region of £1.2 million. In some ways, doing work for the hospital is even more rewarding than supporting it through the Reuben Foundation. It raises public awareness and we are able to reach out to many more people, giving them the opportunity to participate and to help Great Ormond Street Hospital in whichever way they are able to – everybody should be able to do that.

We also had two young people from the Foundation come for work placements at the hospital last year. They found it positively glorious and the experience has enriched their lives. They were inspired by the doctors and by Great Ormond Street Hospital. These young people, who want

to become doctors but weren’t sure whether they wanted to go into paediatric fields, are both very positive about doing so now. So, as far as our association with Great Ormond Street Hospital goes, it is my hope that this is just the beginning.

The Reuben Foundation will certainly be open to discussing future projects with Great Ormond Street Hospital. I think the hospital is like a beacon of light, an institution of excellence and a place that offers hope, comfort and so much more to people all over the country. I would describe the hospital as the foremost authority and the foremost institute of excellence for children in the world. I certainly think that we have the most wonderful doctors and nurses and people in every field at Great Ormond Street Hospital. I’ve never seen such devotion anywhere else and I think that as a country, we all need to support Great Ormond Street Hospital. We all need to make sure that it continues to get the funding and the help it receives, because it deserves it and we as a country deserve it for our children.

Pioneer 13

A

new treatment is available.

It’s intrusive and painful and it has never been tried before. It may be a child’s last hope – or it may not work.

Should it be used?

The consultant feels that everything has been tried for one young patient. She would like to discuss palliative end-of-life care. But the child’s parents would like her to try one more very expensive treatment. Should she do it?

Mary MacLeod OBE, Chair of the Clinical Ethics Committee

Because we can do it,

should we do it?

The six-part BBC documentary Great Ormond Street that aired in spring, highlighted the difficult decisions that doctors and their teams have to make on a daily basis. The most difficult of these decisions are referred to the Clinical Ethics Committee; Pioneer sought to understand more 14 Pioneer

and experience to those difficult questions where there’s no right or wrong answer.

“The CEC provides an opportunity for clinicians and nursing staff to talk through their concerns with a group of people who are not decision-making, but who can raise questions that will help the clinicians to a position where they feel perhaps better able to make that clinical decision,” says MacLeod. “For example, a child has been on the transplant list but has become much more poorly than normal deterioration.

What do you do now?”

Most of us will, thankfully, never have to deal with literally life or death decisions like these. Clinicians working at Great Ormond Street Hospital face them every day. But they don’t have to carry this burden alone.

They can call upon the Great Ormond Street Hospital Clinical Ethics Committee (CEC) for help.

This particular group includes lay people with an interest in ethics, an Oxford professor of philosophy, a hospital chaplain, a lawyer and an anaesthetist, among others. What does this diversity bring? “It makes a very big difference to have, for example, the hospital chaplain, who has a huge understanding of the spiritual and religious motivations of parents and children,” MacLeod explains.

“Dr Colin Wallis puts it very well – ‘because we can do it, should we do it?’”, says Mary MacLeod, chair of the CEC. “That’s a very important question to ask, especially at Great Ormond Street Hospital, where we are operating at the literal and the metaphorical cutting-edge of medicine for very sick children.”

“And to have the legal representative there, who is able to say ‘aha, but that’s a decision that courts can and will take’.

For example, if there is a dispute between parents and clinicians about who has the right to care for a child, where the parents are – just as you would be – absolutely desperate for everything to be done that

“Most of us will, thankfully, never have to deal with literally life or death decisions like these. Clinicians working at Great Ormond Street Hospital face them every day. But they don’t have to carry this burden alone. They can call upon the Great Ormond Street Hospital CEC for help.”

The CEC is a group of people with different interests – for example, medical experts, lay people and those in a particular field, such as law or religion – who discuss questions brought to them by clinicians. It is not a decision-making body. It doesn’t tick boxes or dictate outcomes. There is no requirement for a clinician to seek the advice of the CEC and it’s up to the clinicians to call on it if they feel they need to. It meets monthly but will also convene rapid response meetings in an emergency. It’s a sounding board, a safe place for a clinician to voice concerns, seek alternative views and weigh up consequences. And it’s a place where this disparate group of committee members can bring their own particular perspectives

could possibly be done. But the clinicians have very good reason to come to the conclusion that the child is not going to survive and therefore the kinder thing is not to put them through very burdensome treatment. In that situation it may end up going to court.”

What about philosophy? MacLeod says: “Philosophy brings a process of structured thinking through questions. You could say that is the scientific method, but not entirely. Thinking through ethical questions involves something much broader than purely scientific considerations. It’s about looking at the range of people who might be affected by the decision. It’s about thinking through the practical application of principles Pioneer 15

for each patient. Principles like ‘doing good’, ‘doing no harm’, ‘being fair’, and ‘making sure the patient is at the centre of making the decision’ – clearly all more difficult to think through when the patient is a child and cannot make decisions themselves.”

“So you are thinking about what is in the best interests of the child. What will the impact be on the child’s family, the brothers and sisters, on the child’s parents? You’re thinking about the long-term impact on other sick children, who might benefit from being more aware of the treatment outcomes. But you’re also thinking about the children who might not benefit because they are not getting access to the treatment or the hospital, because the hospital is spending a great deal of time and clinical attention on this one child.”

And lay members can be some of the most perceptive of all, adds MacLeod, whose background is in social work and child protection. Her son was treated at Great Ormond Street Hospital more than 20 years ago. “One of our lay members had a child in the hospital and has the parents’ perspective,” she says. “Some have ethical training and some, like me, have an interest but don’t have specific training.

Our lay members bring their intelligence, sensitivity, wisdom and sensibility to bear on the questions. Often, they will ask the questions that are hardest to answer.”

MacLeod identifies several main areas that throw up these difficult questions for clinicians. “There is whether or not to use new and innovative treatments. They might be using a new and different drug or embarking on a new kind of protocol and this is the first time this has been tried. It might be a rare condition and there is good scientific reason for believing that it might help, but there is not necessarily huge confidence. And if it helps this child, it may help other children.

“Another area is around end of life. Is it right to continue treatment, or is the better course to support a child through a process of offering palliative care? And a third might be around resources. When these are scarce, how should we decide not just which patients should benefit in general, but also whether or not the treatment is right for this child? Is the treatment futile because of very limited benefits?

Is it hugely burdensome, or not? With some questions you are clear about being closer to an answer. With some others, there isn’t a right answer. So you get to the nearest you can think of to a right answer for this child. That’s where you want the clinicians to be after they’ve really thoroughly considered it. Their responsibility to make a final decision is inescapable.”

The CEC is a relatively recent innovation, but it’s an idea which has quickly taken root at Great Ormond Street Hospital.

child, so a service whereby parents could bring cases to the committee through the Patient Advice and Liaison Service (PALS) is under consideration. Some parents have attended a committee meeting where their cases have been discussed. “I think it’s important that parents – and children if their age is appropriate – know that their case is being discussed at the CEC,” says MacLeod.

“But it’s also important that it doesn’t become a route whereby parents who are dissatisfied put pressure on clinicians. The idea is to have a thoughtful and considered

Whatever innovations lie in the future, the CEC will continue to provide that vital free space for medical professionals to consider their choices. The value to all concerned, says MacLeod, is immeasurable.

Following the report of a working party on ethics and the need for a support structure, the Clinical Ethics Forum was established – one of the first of its kind in the UK. The committee was formed in 2000 following staff consultation on the need for a more responsive service. The charity has been key to the committee’s development over the years. It has enabled the hospital to pioneer paediatric clinical ethics by funding posts and training. Most large children’s hospitals in the UK now have some form of ethics committee, and the Clinical Ethics Network website (www.ethics-network.org.uk) offers advice, resources and links to current policy and guidance.

MacLeod wants the CEC to be able to evolve to meet new needs. Although, she says, it’s a very stable committee, she believes that freshness and new perspectives are just as important as knowledge and experience.

“We don’t want it to be set in stone, we want new people to come on,” she says.

“Often, we have young doctors with an interest asking to come along and observe.

Recently, we had two young medical students who presented a small study they had done about a particular ethical issue to be discussed. That’s been useful for them and for us.”

The role of parents and the CEC is also under discussion. Currently, only clinicians can request that a case is discussed by the committee. But parents also worry deeply over doing the right thing for their

discussion around an ethical question. It’s not a route to solve disputes and problems.

“At the moment, we have a process whereby one or two members of the committee, or a member with someone from PALS, has a talk with the parents and explains the process, because some of the questions will be really searching and can be uncomfortable.

We don’t want to be inhibited from asking those uncomfortable questions. Then the parent comes in – possibly with someone from PALS – but doesn’t stay for the whole discussion, so that people can talk freely. It might feel excluding but it is terribly important for this discussion to be completely thorough and unhindered.”

The pioneering work discussed at the Clinical Ethics Committee One case that was discussed at the Clinical Ethics Committee was the first stem cellsupported trachea transplant in a child.

As the first transplant of its kind in the world, it’s this sort of pioneering treatment for which the Clinical Ethics Committee provides an invaluable sounding board.

Ciaran. A donor organ was flown to the UK from Italy, the Great Ormond Street Hospital team removed some of Ciaran’s bone marrow containing the vital stem cells, mixed them with chemicals to stimulate growth and injected them into the donor windpipe for transplantation.

On the day he was born, Ciaran’s lungs collapsed and he was rushed to Great Ormond Street Hospital. He was diagnosed with long segment tracheal stenosis, a condition leaving sufferers with a very narrow windpipe and difficulties in breathing, and needed major surgery.

But at two-and-a-half years old, the metal stent that had previously been inserted began to erode into his aorta, causing severe bleeding.

Two years on, the new organ has strengthened and shows no signs of rejection. Ciaran, now 13, continues to breathe normally, has grown 11cm taller and returned to school. Professor Elliott, leading the Great Ormond Street Hospital team, said: “The ideal outcomes for tracheal transplants in children are normal airway and lung function, good general growth, a decent quality of life, and no further surgical interventions. So far we have achieved this, but we are at the edge of medicine and, just as when the first attempts of organ transplantation were being made in the 1950s, many challenges remain.”

In March 2010, after consulting with the Clinical Ethics Committee, Professor Martin Elliott led the pioneering transplant for

1 The donor windpipe is removed by surgeons in Italy

2 The windpipe is washed with enzymes and injected with stem cells from the recipient

3 The artificial windpipe that had helped Ciaran to breathe had caused internal bleeding

4

Whatever innovations lie in the future, the CEC will continue to provide that vital free space for medical professionals to consider their choices. The value to all concerned, says MacLeod, is immeasurable. “The value to a child is that people other than parents and clinicians are considering what’s in their best interests. The value to parents is that people other than clinicians are thinking through what’s the right thing to do here. The value to clinicians is to have a place where they can really address some of the difficult questions that perplex them. And I know from feedback how helpful they find it. Finally, the value to the hospital is to ensure that we are doing the very best we can to consider the very real ethical questions that exist about what to do in particular circumstances.”

The throat is carefully pulled away from the artificial windpipe and repaired

5 The artificial windpipe is removed and the new windpipe is put in place

6 Ciaran’s pioneering surgery was discussed at the Clinical Ethics Committee

16 Pioneer

The operation step-by-step

The new windpipe is implanted and the stem cells get to work, creating a layer of new cells Pioneer 17

The team: Robin Ward

Great Ormond Street Hospital is a world-renowned hospital, so I knew I would be inspired here

Ciara Lang Pharmacist who joined the hospital in 2009 • As pharmacists, we are experts in the field of medicines. My role is to give advice and make recommendations for the best and most effective treatments for patients.

Robin Ward provides specialised care for children across three disciplines – immunology, infectious diseases and bone marrow transplantation. Many of the children on the ward can be inpatients for many months and they are cared for in an environment where infection control is of paramount importance

• I came over from Ireland as a newly qualified pharmacist and I was looking for new challenges. Great Ormond Street Hospital is a world-renowned hospital, so I knew I would be inspired here, and it’s a great teaching hospital so I knew I’d get great career opportunities.

• As a paediatric pharmacist, my greatest challenge is that drug formulations aren’t always available for children, so we do have to think of different ways to get the medicine into the patient.

• One thing patients may not know about me is that I’m a keen photographer – I’ve done a few courses and have had my photos displayed at the hospital twice before.

At the end of the day, we were so tired and left late, but so proud we’d done what we needed to do under such pressure

Kerrie Devine

Karyn Moshal Consultant on the ward since 2004 • Great Ormond Street Hospital is the mecca of paediatrics. I trained in South Africa and this was always held up as the example of the best place to work.

It’s what we all aspired to.

• Robin Ward is a real challenge with the combination of infectious and immune-compromised patients. It’s the challenge of balancing long-term immunology patients with short-term infectious disease patients.

• Communication and respect for each other is the key to a good team and I think we have that here on Robin Ward.

• I remember one child who had really bad chicken pox. He needed quite a lot of plastic surgery as well as infectious diseases input. It was quite a challenging time for Robin Ward at that point because we had some very difficult and complicated patients. When this child came in, we thought this would be another difficult situation as they had a complicated family set-up. However, the child and family were a complete delight to deal with. They were engaged, concerned only with their child, not the slightest bit inconvenienced by having to travel to us, appreciative of what we did for them and, best of all, we had a good outcome. This is what practising and providing the best possible patient care is all about.

Staff Nurse on Robin Ward who joined the hospital in 2010 • We deliver family-centred care to about 10 families on the ward and we help look after the children, so we go from helping with hygiene needs (brushing teeth, bathing), right the way up to administering intravenous medications, chemotherapy and blood components.

• Team work is crucial for the day-to-day running of the ward, but is really evident when we’re at our busiest. I remember one shift when two members of staff were off, so there were only three of us left and we had quite a lot of medications to give that day. We all pulled together.

At the end of the day, we were so tired and left late, but so proud we’d done what we needed to do under such pressure.

• My fondest memory of my time here was when I was given my blue uniform. Before

18 Pioneer

you become a qualified nurse, you work in red and white candy stripes, which is the student uniform. When I was able to walk on to the ward in my new uniform, I felt really proud that I’d achieved what I wanted to.

• I remember one little boy every day I come to work. He was called George and was with us for nearly six months. He reminded me of Tommy from Rugrats with big blue eyes and little teeth and he used to sit by the window of his bedroom. Sadly, he died just before his first birthday. But he was with us for such a long time and we got so close to the family.

Pioneer 19

Katie Snell

Clare Templar Senior Staff Nurse who recently rejoined the hospital • A senior staff nurse has a leadership role on the ward – providing high standards of family-centred care, supporting junior staff and ensuring team goals are achieved.

• The main challenge on Robin Ward is that the children are nursed in isolation.

They don’t get to interact with the outside world much during treatment. Therefore, play specialists and good communication are key in overcoming the isolation.

• Mohammed is a little boy who has been on the ward multiple times under the Bone Marrow Transplant team. Even though he is poorly, he still manages to be playful and his family are lovely to work with.

• To relax outside work, I like to go horse riding.

Clinical Support Nurse who joined Robin Ward in 2007 • My role is supporting all the nurses on the ward, particularly the more inexperienced nurses. I help with their training and make sure they’re doing everything correctly, such as balancing fluids.

• Before I came to Great Ormond Street Hospital, I worked in Accident and Emergency, which was very different from what I do now. Initially, I wasn’t sure if I liked ward work, but after some time, I grew to love the combination of specialties, the variety, and the fact we have long-term children that you get to know.

Beverley Cox

• Communication is the key to the Robin Ward team working so well. As long as we are all singing from the same hymn sheet then we get a successful outcome.

Play Worker who joined the team in July

• I remember one patient sending a letter to Jane Collins, the former Chief Executive, thanking us for all that we’d done and I got a mention in the letter. That’s one of my fondest memories, feeling appreciated.

• My role is to spend time with children either in their cubicle or in the playroom.

We have fun, develop senses and do creative play to keep the child stimulated while they’re going through their treatment.

• To relax outside work, I like doing soft furnishings – making curtains, finding old chairs and covering them.

• On Robin Ward, there’s the real challenge of getting past infection control. A lot of things that I’d like to do, I can’t because they don’t pass the guidelines for

Robin Ward Sister who has been at Great Ormond Street Hospital since 1998 • The biggest challenge of working on Robin Ward is the diversity of the nursing care required with three different areas.

You might have a tuberculosis patient in an isolation room where you have to wear a mask, and then you’d have a bone marrow transplant patient in the next room. You have to ensure you’re not passing the infection on to that immune-compromised patient.

• I’m so proud of my team. We’ve been nominated three times in a row for Team of the Year at the hospital’s annual Staff Awards. I think that’s because we’re friendly, approachable and enthusiastic.

There’s no lack of clarity – we are transparent with all our families.

• This hospital has given me so many memories over the past 14 years but the most memorable was when Robbie Williams came to visit one Christmas Eve. At the time on Robin Ward, the nicest little boy had just passed away very peacefully so the ward was a very sombre place. Just as Robbie Williams entered the ward, the parent who had just lost her child was coming out. And he just put his arms out and gave her the most enormous hug.

It was probably the most personable experience I’ve ever seen.

• One secret that patients and my team may not know about me is that I’m a closet Daniel O’Donnell fan. I hope that closet remains firmly shut!

infection control. So it’s really fun finding a medical kit – bowls, straws, medical tape, bandages – and using those things to make things rather than just not doing the activity. You really have to innovate.

Yesterday I cut a sick bowl into palm tree leaves and we painted them green.

That particular girl can’t have any sealed cardboard, but she can use that. Those things take a bit of thinking through, but it’s fun.

It can be difficult co-ordinating teams on the ward as we have three specialties with different clinical leads

Rosie Johnston

20 Pioneer

• My colleagues probably don’t know but I trained as a make-up artist before I was a nurse. I don’t really do it anymore, only for my mum!

Adele Cleaver

Clinicians’ Assistant for Robin and Fox wards who started in 2008 • Before applying to work at the hospital, I worked for a bank for 11 years, so this was a big change.

• The biggest challenge on Robin Ward is that the children can get really sick very quickly because they don’t have any immune system. That changes your whole day and you need to be on the ball and ready to act quickly.

Kenny Crawford Recently promoted to Senior Staff Nurse having joined Great Ormond Street Hospital in 2008 • As a senior staff nurse, I’m based on the ward and involved in the care of patients but also in the day-to-day management of the ward, for example, being in charge of the shift rota and other management issues.

• It can be difficult co-ordinating teams on the ward as we have three specialties with different clinical leads.

• I remember one family from France who had been transferred to us for a course of chemotherapy. They didn’t speak English and they weren’t able to communicate well. However, they were so incredibly nice, they had a smile for us every day.

• I’ve recently got a puppy that takes up all my time outside work. She’s a pug mix and we take her to pug parties in Green Park where she can meet other pugs.

Pioneer 21

S

ome children are born with a disease that causes premature fusion of the fine spaces – cranial sutures – running between the bony plates of the skull. Known as craniosynostosis, the condition prevents the skull from growing with the child, causing a build-up of pressure and deformities of the head and face.

“The abnormal growth of these children’s skulls can cause problems with their speech and feeding,” Mr Owase Jeelani, Consultant Paediatric Neurosurgeon, explains. “As the pressure within the skull builds up, children’s airways can become blocked, leading to breathing difficulties.

Over the years, we’ve played a leading role in correcting these conditions, using a technique called frontofacial distraction – where the face is detached from the skull and gradually repositioned using a device that fits over the head, called a rigid external distraction (RED) frame.

But although it’s effective in many cases, this surgery is not without risk of serious complications.”

The problems with current surgical techniques are twofold. Firstly, the design of the current RED frames does not allow for precise control of where the bones of the face and skull end up. The frame itself is cumbersome, and often does not fully correct a child’s facial deformities. Equally as important, and despite their extensive experience, the surgeons currently have no

way of knowing how close the end results of their operations are to a normal face.

To tackle these issues, the team have laid out a bold vision for the future of craniofacial research.

For a number of years, they have been using custom-built springs, designed to apply an exact force on the plates of the skull, to push apart the bones as they grow and make space within the skull.

Mr Jeelani and his team have pioneered use of these very special springs to circumvent the need for the far more invasive surgery, which previously required opening the skull from ear to ear with a lengthy recovery time.

“We’re the only hospital to engineer these kinds of springs in-house,” said Mr Jeelani.

“But this is just the beginning of a whole new field of research.”

The team plan to develop programmable distraction devices. Working with the School of Mechanical Engineering in Leeds, as well as experts in nanotechnology, such as Professor Alexander Seifalian at the Royal Free Hospital, the team are investigating how to manufacture these devices in a way that could allow precise control of the forces they apply to patients’ skulls as they grow. This truly tailored form of craniofacial distraction would offer far more exact control of the movements of the face and skull that patients require, simply not possible with devices such as the RED frame.

Deekshitha’s story

About face Revolutionising children’s craniofacial surgery 22 Pioneer

Within three months of Deekshitha’s birth in Chennai, India, doctors identified problems with her head, face and neck.

Her first surgery was to correct these and everything seemed fine. At two-anda-half years old, the problem occurred again and she was diagnosed with craniosynostosis. As they get older, most patients with craniosynostosis need one or more major operations to help improve both the medical and cosmetic aspects of their condition.

Deekshitha’s condition also means she suffers from hearing problems and other issues affecting her eyes, brain and throat.

Deekshitha, diagnosed with craniosynostosis, has had a rigid external distraction frame fitted

After researching her condition, Deekshitha’s parents flew her to the

UK for treatment. “We spoke to family friends, some of whom are doctors, and they all suggested she should come to Great Ormond Street Hospital because it is the best,” her father said. Now four years old, Deekshitha and her family have been flying back and forth from India ever since and she has now had three operations, the last of which was to fit a semi-circular ‘halo’ called a RED frame – a device attached to the skull with metal pins and gradually adjusted over three months to help move forward the separated bones of the face relative to the skull. Her parents are now hopeful that she won’t need any more operations until she is 17, when surgeons will operate to correct her jaw.

Pioneer 23

In parallel with what will be the first trials of these devices in humans, the team will exploit a unique reference of facial and skeletal data, captured via collaborative projects with London’s Science and Natural History Museums, UCL Department of Medical Physics and Bioengineering, the Department of Orthodontics at the Eastman Dental Hospital, and the Bosma Collection at

Johns Hopkins Medical School [see below, Me in 3D]. Armed with this resource of information on what defines a normal face, the team will predict and then monitor the changes in facial shape they hope to affect in children with craniosynostosis – quantifying the exact alterations in bone structure that each child will need over the course of their treatment.

Mr Jeelani is cautiously optimistic about the impact this research could have. “Here at Great Ormond Street Hospital, we have an unprecedented opportunity to bring together expertise to deliver this research for the benefit of our patients. If we succeed, I hope we’ll have produced something which craniofacial units around the world can use to help the children in their care.”

Me in 3D Earlier in 2012, the Craniofacial team took part in a unique collaboration – Me in 3D – to try to understand the complex differences in tissue structure that make up everyone’s unique facial shape

Expanding our

horizons With plans recently announced by the Department of Health and UK Trade and Investment to encourage more NHS hospitals to explore international opportunities, Pioneer looks at Great Ormond Street Hospital’s partnership with Kuwait

M

edical expertise has never been in short supply at Great Ormond Street Hospital in the 160 years since it opened. Today, the hospital is a world leader in paediatrics, has more than 50 different clinical specialties and many world-first medical developments to support that reputation. But while building up a vast wealth of knowledge and experience to treat children in the UK is important, Great Ormond Street Hospital is also committed to looking further afield, tackling paediatric healthcare on a wider scale.

They used high-tech cameras to collect 12,000 three-dimensional scans of people’s faces, in order to understand how they varied.

“As we’re all different, it’s very hard to define what a normal face should look like,” said Mr Jeelani. “This project provided a unique set of data, which allowed us to come up with a system for defining landmarks across a child’s face. Combined with high-resolution scans of children’s skulls housed at the

24 Pioneer

National History Museum and Bosma Collection at Johns Hopkins Medical School, Maryland, we now have a reference of what to aim for when carrying out our surgery.”

This information will help the team to plan operations better for children with deformities of the face and skull, moving away from a one-shape-fits-all approach towards surgery tailored to each child’s unique face shape.

With that in mind, the hospital is now working in partnership with the Kuwaiti Government to provide clinical advice on paediatric management, education, training and service consultancy on haematology and oncology to the Arab nation. The partnership began in 2010 with the Kuwait Health Office striving to improve services and increase Kuwait’s capacity to treat paediatric patients with cancer locally. The benefits for Kuwait are clear – advice from world leading paediatricians – and Great Ormond Street Hospital also benefits in the form of additional and much-needed income, which is directly reinvested into the hospital for the benefit of all patients.

My part in the programme Mandy Matthews, Lead Nurse for International Education

Mandy Matthews, Lead Nurse for International Education

As part of the agreement with the Kuwaiti Government, senior medical staff from the hospital make 15 visits annually to Al Sabah NBK Paediatric Hospital to deliver 10 education modules through 200 training and education sessions to 300 consultants and nurses. Great Ormond Street Hospital teams have also given practical support and training to nurses and doctors on wards at NBK, and provided leading-edge diagnostic capability to patients, such as introducing minimal residual disease testing for children with leukaemia.

As the two sides enter the final year of the initial agreement, Great Ormond Street Hospital is already looking at how it can develop the partnership further through providing additional support and services on top of haematology and oncology, to ensure that Kuwait is using the most up-to-date protocols for paediatric disease management.

The aim of the nursing education programme, delivered by experienced children’s nurses from Great Ormond Street Hospital, is to share their expertise in patient care, research, clinical leadership and service development with the nursing teams in Kuwait. The emphasis of the programme is to establish a baseline of core knowledge in nursing sick children for all the nurses at NBK, while reviewing current practice in these areas. It’s been important to ensure consistent leadership, a shared vision and sustained commitment to deliver the agreed plan.

During the first two years of the programme, additional specialist teaching and training has been provided to a team of NBK nurses identified by their Director of Nursing, Matron Mona, as having the potential to become specialist children’s cancer nurses.

During the third year of the programme, we will focus on enabling the nurses to contribute to discussions within the multidisciplinary team, promoting and fostering an understanding of the roles of the nurse, doctor and other members of the healthcare team in helping a family and child to adapt to the diagnosis and treatment of cancer in children.

Pioneer 25

A parent’s perspective:

W

e already had two daughters, but Ellis was our first boy. As a dad, and the only man in the house, I was really looking forward to his arrival.

He was born by emergency caesarean at St John’s Hospital, Chelmsford, and when he came out, he wasn’t weeing or anything.

I thought, “is that major, or is it something they can sort out while we’re here?” It’s only when they said he was being transferred to Great Ormond Street Hospital that the alarm bells rang.

We were worried because it is very rare for a child to be on dialysis from birth.

He was being fed through a tube, was on medication to keep him alive, and we were given the option to stop all the medication and let him pass away. We’ve been told the same thing on numerous occasions over the years, but that wasn’t an option as far as I was concerned.

Ellis was on home dialysis for two years.

That was the worst experience of my entire life. There were all kinds of things that were wrong with him. And in those early years, I think our daughters suffered because Ellis’ care took up all of our time. He was growing up, he was on dialysis, had a wheelchair

“I wouldn’t change a thing. I would love him to be completely healthy, but he’s not going to be, and if he was a healthy child, he wouldn’t be that same person we love.”

I knew nothing about Great Ormond Street Hospital. Unless you’ve got a seriously ill child, or you know someone who has a seriously ill child, it’s just not part of your life. It’s not until you actually go there that you realise the severity of the illnesses some of these kids have got. It’s not your normal hospital.

The doctors said Ellis’ problem was something they’d seen before. His kidneys weren’t functioning. Usually, with a bit of medication they would kick in and it would be fine. When I heard that, I wasn’t really too bothered. I thought, “they know what they’re doing”.

They’d been giving Ellis medication and monitoring him when they realised he had a blood clot which was stopping his kidneys from functioning. It was centimetres from his heart and was very dangerous, but they liked to think it would move and the kidneys would kick in. It never did. So then we knew he was to go on dialysis.

me and my boy

because he couldn’t walk, and he wasn’t eating. But I think it made me and my wife stronger. She was off work for 10 years coping with him and hospital trips.

Those early years were awful.

The next thing was to go on the transplant list and just wait. But in between, Ellis had a cardiac arrest. He was poorly in hospital, which happened a lot, and we got a call asking if we were coming up to the hospital.

When I asked why, I was alarmed to hear he’d been rushed to intensive care and a police car was being sent to pick us up.

In the car I was thinking, “oh my God, I’ve got to bury my son.” We got there and he was so poorly. But it was just one of many episodes over the years. When we finally got a transplant match, I jumped for joy.

It’s a massive operation, but it had to be better than dialysis. With all the problems he has, it wasn’t straightforward, and initially I thought he wouldn’t make it. But, of course, he did.

He’s 10 now and all he’s interested in is football. He’s football mad and a disabled member at Arsenal. He’s met all the players, interviewed Arsène Wenger and we go to every home game. Everyone knows him.

One year, he won Junior Gunner of the Year. He just battles. He’s sight-impaired and has had plates in his knees, but he’s participated in the British Transplant Games three times.

The worst thing is knowing you’re not supposed to bury your kids, but at some point I know that may happen. We were always told he could only ever have one transplant, but we don’t know. I don’t look past today, he’s great today but tomorrow he could be awful. I try not to look too far into the future.

But it’s not all doom and gloom. We’ve had great times – Lapland, Disneyland Paris, things like that. You’ve just got to give your child that chance. I wouldn’t change a thing.

I would love him to be completely healthy, but he’s not going to be, and if he was a healthy child, he wouldn’t be that same person we love.

Trevor and Ellis at home in Upminster

26 Pioneer

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.