Pioneer Magazine, Spring/summer 2012, issue 1

Pioneer Spring/summer 2012

A cure for ‘boy in the bubble’ syndrome

Motherly love – the mum who didn’t leave her son’s bedside for nine months How a rising tennis star survived his heart stopping for 13 minutes to play again

The child first andPioneer always 1

here we are today

y Lourdas Photography Ltd

Tim Johnson Executive Director

It’s the future that guided the naming of this magazine. Over the 160 years of its existence, Great Ormond Street Hospital has been at the forefront of pioneering new medicines and procedures for the care of sick children. It’s thanks to your support that in years to come, the hospital will continue to look back with pride as it stays true to its motto, ‘the child first and always’.

2012 is a seminal year for the hospital with the past, present and future coming together. It’s the year we look to the past as we celebrate the hospital’s 160th birthday and recount many of the amazing stories that the hospital has witnessed.

The present is just as exciting, as the rebuilding programme is soon to reach a key milestone with the opening of the Morgan Stanley Clinical Building, the first part of the Mittal Children’s Medical Centre. Finally, we glimpse into the future of research and imagine how our care of children will evolve in the decades to come.

Welcome to the first edition of Pioneer, the bi-annual magazine that keeps our supporters updated with all the exciting developments at Great Ormond Street Hospital.

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How pioneering gene therapy has helped children such as Mustaf (cover picture)

12 Feature: gene therapy research

The chief executive of Capita explains how and why he supports the charity

11 Why I support the charity: Paul Pindar

James Doherty tells Pioneer about life before and after his heart attack on a tennis court

08 I have long QT syndrome

A Q&A with the president of the Royal College of Paediatrics and Child Health about the challenges facing paediatric care

06 The Pioneer interview: Professor Terence Stephenson

Latest updates including Foundation Trust status, the opening of the Morgan Stanley Clinical Building, and plans for a Centre for Children’s Rare Disease Research

04 Around the hospital

20

A mother explains t nine months at the

26 A parent’s persp Care Unit

How our relationshi Medical Center is b

24 Our place in the

Jessica Ternier, Neur visit the ocean’s floo

23 My big question:

Dr Colin Wallis’ rese cystic fibrosis

20 Bench to bedsid

An in-depth look at of the busiest wards

16 The team: Kidney

Delivered on time and budget, the new building has been designed in collaboration with children, parents and staff. The users of the clinical space have been borne in mind at every stage. For example, the walls along the theatre corridors are being

The Morgan Stanley Clinical Building, the first part of the Mittal Children’s Medical Centre, is to open to children and their families shortly. Providing world-class facilities over seven floors, it will allow the hospital to care for children and families in greater comfort and privacy.

The clinical teams will be moving into the building according to a carefully planned, staggered timetable, but The Lagoon restaurant, located on the ground floor, has already started serving

families, more en suite bathrooms, adolescent game rooms and hightech entertainment systems. Parents and families will also benefit from new catering facilities and private consultation rooms. With all aspects of the design being carefully thought out, the new building will see a step change in the care delivered to the patients of Great Ormond Street Hospital.

Building a brighter future

ital…

Professor Russell Viner, Principal Investigator

Young people and their parents meet a trained provider regularly over six months and learn how to make healthy food choices, increase activity, and think about any other issues that might contribute to their being overweight.

The Healthy Eating Lifestyle Programme (HELP) encourages young people to gain control of their weight by increasing their self-confidence and motivation. It encourages them to set their own goals and focus on why losing weight is important to them.

They are encouraged to think about how to achieve these goals in a friendly and supportive environment.

Researchers from the UCL Institute of Child Health, Great Ormond Street Hospital’s research partner, are seeking overweight teenagers between 13 and 17 years old, based in London, to take part in a free weight management programme in their community. This is to help combat what Professor Terence Stephenson describes in his interview on page 6 as an obesity pandemic in this country.

UCL Institute of Child Health leads study on obesity

“The call is among a raft of proposals by a commission set up jointly by bodies representing NHS organisations and local

According to The Guardian newspaper, “Nurses, doctors and care workers should be recruited as much for their compassion as for their exam results, according to an inquiry into improving the dignity of treatment of elderly people in hospitals and care homes.

Great Ormond Street Hospital has announced plans for a major new Centre for Children’s Rare Disease Research to open in 2018. Once it is open, the opportunities for children with rare diseases to participate in studies and help doctors and scientists advance the understanding of their condition and find effective treatments will increase.

Work carried out in the new centre will mean that the hospital can start to help more children more quickly.

Plans for Centre for Children’s Rare Disease Research

Six-year-old Scarlett, who has the rare condition congenital melanocytic nevus, with Dr Veronica Kinsler

The Guardian says: “Trish Morris-Thompson, NHS London’s Chief Nurse and a member of the commission, said that recruitment and regular career appraisal of staff should

Great Ormond Street Hospital works with London South Bank University and is one of the largest trainers of children’s nurses in the country. The hospital has been working on ensuring nursing students have the right values and approaches for some years.

What’s your opinion on the current state of child healthcare in the UK ?

I think my biggest concern at the moment

Why did you decide to be a paediatrician?

First, the patients. Children are great levellers, they don’t respect hierarchy, and most of our patients get better while still in childhood. So the immediacy of paediatrics certainly attracted me.

The second reason was the chance to remain general. As a paediatrician you don’t specialise to the same degree as you do with adults. There are doctors who spend all their time doing the same clinic and becoming experts with two to three drugs to manipulate blood pressure. That’s certainly a vital job, but it isn’t for me. I liked watching paediatricians and how they could go from dealing with an emergency to helping a child with long-term conditions such as epilepsy or diabetes.

What is the biggest misconception about paediatric medicine?

It just isn’t the case that you simply take what’s best for adults or what has been tested in laboratory models, and extrapolate this to children. So many of

So, how would you get around the shortage?

What we are keen to do is to persuade the government centrally, and hospitals and paediatric services locally, that many of these hospitals admit fewer than seven children per day and many of those smaller hospitals are within 30 minutes’ drive of another hospital. It seems to us there would be great benefits in some merging of services. It doesn’t mean you close them completely in one place. They might remain open at the peak hours when the demand is greatest, but it doesn’t mean they have to have overnight inpatient hospital wards in all of these 220 hospitals.

Professor Terence Stephenson, President of the Royal College of Paediatrics and Child Health, talks to Pioneer

The Pioneer interview

The government realised there was a gap between research and policy, so invited bids from organisations to set up a unit to study issues which are really important for young people and their

Was the pneumonia study a success?

Well, we started off by mapping out what was currently done and found it was pretty random and ad hoc with everybody using very different antibiotics. We produced a guideline that suggested using one very cheap antibiotic that was very effective.

Then we went one stage further and did a large randomised trial comparing oral

We won the tender process and have been awarded ÂŁ4.6 million over five years to set this up.

Another common criticism levied against involving children is that parents won’t consent to taking part in the studies. Our experience has been quite the opposite.

Of the 400 families we approached for a pneumonia study, fewer than 40 declined.

We have to be very upfront with parents and say if we’re going to make breakthroughs, then we need to do testing on children.

It may not even be for the benefit of that child – it may be for their younger brothers or sisters, or for children yet to be born.

But we can’t give up by saying “Sorry, but children are too precious to take part in research studies�.

What is the biggest barrier to policy being based on research, not opinion?

How will the research unit make a difference?

In an ideal world, government policy would be guided by our research in those four areas. However, in reality, they ask us a question and we advise; it’s up to them if they use it. We’ll also make the whole process more efficient. For example, say a politician has an idea to introduce a watershed for advertising junk food in order to alleviate the childhood obesity problem. On the face of it, it sounds a good idea. But wouldn’t it be better to look at the research that has already been done and see if anybody across the world has already tried this and whether it had an impact?

families. Together with colleagues at the ICH [UCL Institute of Child Health] and UCL [University College London], we formed a proposal focusing on four areas: t *OFRVBMJUJFT DIJME IFBMUI QSPNPUJPO and illness prevention. t .FOUBM IFBMUI JO DIJMESFO t "DDFTT UP IFBMUI TFSWJDFT QBSUJDVMBSMZ child protection. t 5FFOBHF QSPCMFNT TVDI BT QSFHOBODZ sexually transmitted diseases, smoking, drug use and obesity.

People often say “Well isn’t that using children as guinea pigs?� I don’t find that derogatory, as so many discoveries over the past 20 years would not have been possible through testing on animals or adults and extrapolating. For example, research on cot death, which halved the number of deaths, could never have been done on adults or animals. The vaccine for haemophilus meningitis, which eradicated it, could only have been done through testing on children.

“People may use the term ‘nanny state’ pejoratively, but in this instance the nanny has saved lots of children’s lives, and if that’s a nanny state, then I’m happy to be a part of it.�

managed to get the pharmaceutical industry to conduct research on children for children. It’s been a huge success and we now have a Medicines for Children Research Network.

e long yndrome James tossed the official match coin at the 2009 Wimble

It was in September 2008. I have to piece that day together as I don’t remember it clearly. I remember going to my tennis club at 8am, then on to Hazelwood, in London.

I know we had a two-hour session, but I don’t remember anything from that point.

I was told it was a really tough session

I was good at both but I intended to become a professional tennis player.

I’d been offered trials at football teams but turned them down because I enjoyed tennis so much. In my county, Hertfordshire, I was one of the top two players. When I was 13, I’d managed to move from 80th in the country to 28th in the space of eight weeks. Then I had my heart attack.

dream about being a professional footballer, or some other sportsman; for me it was a reality. One morning a week, I came out of school to train at the tennis club, as well as playing after school. At other times, I’d be playing football. On Saturday and Sunday, it would be either a tennis tournament or a football match.

I have to show my little card which says I’ve got a defibrillator, which lets me walk around the side of the security machines.

summer. And in a few weeks, I’m going to Peru on the World Challenge – over three weeks we spend five days trekking, five days helping the local community,

James, now 16 years old, relaxing at home with his mum, Sarah

One way I’m involved with the charity is through the Corporate Partnerships Board.

There are 15 of us who help in three main ways. Firstly, it is an unashamed attempt to get people to use their business contacts to introduce them to Great Ormond Street Hospital Children’s Charity. Secondly, the board is utilised to leverage favours from friends. So, if the charity wants to sell 500 tickets for its F1 event, the board uses its network to get family, friends and individuals into a room, who you know are pretty well-off and are likely to spend money. Thirdly, it’s coming up with mutually

It’s rewarding seeing children that are getting successful outcomes. The calibre and commitment of the doctors who work in the hospital are outstanding. And the other thing that always strikes me is that when you walk around the hospital, you can’t help but think there is still actually quite a lot to do – a lot we can help with as supporters.

O

ne of the things that appeals to me about Great Ormond Street Hospital is that there is a very tangible correlation between money that is raised from donors and the outcomes that are achieved by the hospital, whether they are new buildings that can be constructed, new equipment that is able to be bought, or research that improves the outcome for children. Also, the size of the charity makes me feel that I can make a difference.

The fact that the charity is looking to raise something in the region of £50 million a year makes it a meaningful charity, but equally not so big that the money doesn’t matter.

I don’t support the charity because I particularly want a great deal out it, but personally I do find it interesting. I meet a diverse group of people, many of whom are different from the people I would normally meet in my working life, and engage in an activity which is fundamentally different from the business world. You just meet a different set of people and some of those people have become very good friends as a result of Great Ormond Street Hospital

I think the selection of the right sum of money and the right number of members is very clever: asking people for £25,000 a year for three years. I think to a lot of wealthy people, £25,000 is a meaningful amount of money, but something they can afford to give.

“The calibre and commitme who work in the hospital is

By Paul Pindar, Chief Executive Officer at Capita Group Plc

the charity

y lethal diseases are now starting . The pace of paediatric research is ans can now manipulate children’s ty genes – one of a range of unique, being pioneered at the hospital

lution

Work by our leading clinical geneticists in the 1970s led to the discovery of the genetic origin of a number of severe and, at the time, untreatable diseases that left children without a functioning immune system. The most famous was David Vetter, a Texan child, who suffered from severe combined immunodeficiency (SCID). Children with SCID are unable to fight off disease, meaning that any infection they are exposed to can prove fatal. His condition meant that he spent almost all his 12 years of life in a specially

History of gene therapy

Y

ou may not see it on the news every night, but we are in the midst of something akin to a healthcare revolution.

Recent scientific breakthroughs, new technology and a collaborative approach are now giving the medical profession the chance to provide treatments and, in some cases, cures for conditions that were untreatable or impossible to diagnose until very recently.

Professor Levinsky’s vision has now been realised, with work led by Professors Bobby Gaspar and Adrian Thrasher. Ten years ago, their team began to offer children with SCID – the condition that afflicted

Making a difference today

From the very earliest days of the transplant programme, its founder, Professor Roland Levinsky, had a grander vision: to find the faulty genes responsible for immune diseases, and engineer a new form of therapy to repair the DNA inherited by these children to allow their bodies to produce the vital disease-fighting cells.

saved the lives of many children with these devastating conditions, as well as those with drug-resistant and recurrent leukaemia.

Enormous strides have been taken by the hospital’s teams to improve the safety of these transplants and reduce many of their life-limiting side-effects. However, because of a broad scarcity of blood and marrow donors, a close enough match is sometimes not found, and the treatment itself remains high-risk for a number of children with such compromised immune systems.

In March, doctors at the hospital and the UCL Institute of Child Health were able to report that five patients with another rare genetic disorder, chronic granulomatous disorder (CGD), have responded to gene therapy. CGD is an inherited, life-threatening immune disease affecting boys. Children with the condition have normal protection from viruses but cannot produce working

Where next for gene therapy?

“We can now say with confidence that we have a means of curing SCID. Also, the success of the programme has saved the NHS millions of pounds,” Professor Gaspar adds.

Among them is 10-year-old Mustaf, pictured left, who as a baby had numerous infections, no immune system and was not expected to live much beyond his first birthday. Eight years on from his treatment, he’s reported to have caught nothing worse than a common cold.

It may have something of the science fiction about it but, to date, this pioneering programme has seen 14 out of 16 children successfully treated, with the majority now well and leading productive young lives, attending school and parties and playing sport.

in a paediatric setting. It relied on removing a sample of the patient’s bone marrow – the building block of all of the body’s immune cells – and exposing them to viruses carefully modified to carry a functioning copy of the faulty gene that causes SCID. This modified virus is then incubated with the bone marrow, where it transfers and integrates a working copy of the gene into the DNA of the recipient cells. Now armed with the vital genetic instructions which they previously missed, the bone marrow cells are re-introduced back into the patient, where they grow to produce the full spectrum of immune cells crucial for fighting disease.

“Jack was born in May 2004, and was diagnosed with X-SCID in September that year. When he was diagnosed, it felt like our world was ending, and that he would never be able to do ‘normal’ things. Once we had the diagnosis, we were admitted to Great Ormond Street Hospital. Jack’s health had deteriorated in the transfer

Jack, now seven years old, was the seventh patient on the ground-breaking X-SCID programme. His mum, Debra, told Pioneer:

Jack’s story

at the hospital this year. We reported in August 2011 that 14 out of 16 patients with the first two diseases on our programme, X-SCID or ADA-SCID, showed clear clinical benefit. Trials for a fourth disease, Wiskott-

e I enjoy oy gardening t In my spare time nger span nie iel ca call lllled ed and walking my sprin springer spaniel called baking g (and (aand eating) eatting) in ng) g Diamond. I also like baking daug ghter hter’ss w eddi ed ding ng cakes and madee myy daughter’s wedding ase don’t do on’t n’t te tellll th tthe he rrest he est es cake. However, plea please hey may may expect expe ex pect ctt a w eekl ee kly kly of the team or they weekly s! delivery of cakes!

t It’s the results that hat make all the hard work worthwhile; e; recently a strapping teenage lad left our paediatric renal unit to go to an adult unit. He had been in our care from just after he was born and had dialysis,, then a transplant at the age of five. He’s now training to be a carpenter.

much more as a team. We’ll be able to ensure that all our nurses are fully trained in all aspects of the care of our patients.

logist and lead d clinician ward since 1990 90

nit treated d more than r profiles eight key m, who will ll soon be es in the British ritish Kidney hildren’s Kidney Centre

team: ey Unit

t The Christmas panto put on by the play specialist and starring all the staff is really heart-warming and lovely.

It’s just great to see the kids, despite

t I’m here to support families with both the practical and emotional challenges that having a child with renal failure can create, whether they are an inpatient at Great Ormond Street Hospital on life-saving dialysis or going through the challenges of transplantation.

t One thing that patients

t The consultation rooms in the new kidney centre will make a real difference to my work. Sometimes ometimes you do need to have a private rivate conversation with a parent ent and, on the current ward, thatt often involves taking the parents nts on a 10-minute walk across the hospital to a quiet room,, which isn’t ideal.

Social worker who has supported patients and families milies on the renal ward for the past two-and-a-half yearss

Liz Nunn

One thing that patients won’t know about me is that in my twenties, I trained to be a plumber!

t t TTh The e first firs successful transplant I was fi involved involv ve with really sticks in my mind.

It was rrelatively soon after transplants in small cchildren became possible, so it felt a though as tho ou I was part of something really exciting ex xci c ti tin ng and ground-breaking.

roles that th have been brought into the NHS in the past decade. Part of our role is tto lead nursing in the clinical field, have our ou own patient caseload similar to medical consultants, and provide further medica education to all of the multidisciplinary educat My speciality is renal, but I have team. M specialist interest in hypertension and special management. blood pressure p

t A real highlight for me has been the patients’ Christmas Party. It was lovely to see the children come together

t My job isn’t just all play. While I do have general play sessions with patients, I also undertake development sessions if they need to catch up on any areas.

I also work with siblings to keep them entertained while the patient and their parents are busy.

t In my spare time I love shopping and

t You really see the best of the team over Christmas. Everybody works so hard to make it as special as possible for the children who aren’t able to go home.

t Teamwork to me means being able to rely on colleagues for support. It’s a fantastic place to work as somebody is always willing to offer a different perspective on a problem and support you.

Play worker who has been entertaining the children of the renal ward for the past 16 months

Kirsty y Johnston

ver Christmas, everybody works so ard to make it as special as possible for e children who aren’t able to go home.

t My colleagues probably rob bab ablyy don’t don n’t ’t know w that I’m a green belt in Tae Taekwondo. ekw wondo. on .

I hope to get myy black belt bellt one on ne day. day.

t I think the key thing ing that enables the renal ward to function so well is the amount of respect spect everybod everybody dy has for each other er and theirr opinions, opi o p nions,, regardless of job title. Ward d administrators admini nist stra st rato ra tors rs feel comfortable approaching approac aching g consultants, cons onsultants, and communication between tion be betwee en all all elements al e em el ments ts of the team is vital tal to o its success. succcess. es

ed the hospital in 2009 transplant. Everybody is involved – from preparing the patient for the operation to caring for them afterwards. It really is a team effort, with everybody contributing their own expertise and hierarchy not getting in the way of giving the best care possible.

t To relax away from socialise with frien and plan my Welsh

TTh he most mosst challenging mo chall t t The part of my role our really high role le e is is just just maintaining main sttandard of care car in such a demanding standard and and busy ward. ward t The Th new kidney kidne centre will make a big difference iin terms of giving more big privacy to the children and privacy and space sp

t I help look after admissions, making sure we get the patients in for the procedures. So whenever the consultant

t One part of my role I really enjoy is understanding what everybody else does.

I get to work with all the team members

Acting clinician’s assistant who moved to the hospital three years ago

Kibria Hussain

their parents. Curre new patients and th the ward for the fir see they’re shocke conditions. Howeve Clinical Building wi facilities to back up

t I manage manag age the th he unit un so I co-ordinate e erything and ev and look after the staff. everything

Ward sister who joined the hospital 10 years ago ag

Sarah Matthews M

t The first transplant games early in the new millennium really stand out over my time at the hospital. It really put into perspective what we do on the ward and the difference that we can make.

It was lovely.

already brought up my own children. I wanted a full-time job that I could really throw myself into.

care of tic fibrosis

el s hter re children with cystic fibrosis done to date.

Isobel, now enrolled as a participant in the hospital’s pioneering cystic fibrosis research, is doing well, growing healthily, crawling and trying to stand like any other

Isobel was one of the five children born in the UK every week with cystic fibrosis.

Within 14 hours, she had been rushed to Great Ormond Street Hospital requiring an operation on her bowels to repair a condition called meconium ileus which can affect newborns with cystic fibrosis.

For the next six to seven weeks, she could receive food only intravenously, and it was not until she had a second operation that she could take breast milk from her mother.

Then, just as she was ready to go home, Isobel contracted a chest infection which needed a course of intravenous antibiotics before she could be discharged.

Mum, dad and Isobel face a br

Sixty years ago, the prognosis for children with the disease was bleak. We now know that the faulty gene causes a key protein to fail, resulting in a build-up of thick mucus and inflammation in any of the body’s tubular structures – principally the lungs, but also the pancreas, liver, intestines and reproductive organs. This in turn leads to infection and organ failure, with respiratory disease the main cause of early death. In the 1950s, almost no children with cystic fibrosis survived beyond their first five years.

The disease only occurs when both parents carry this same genetic error. As there are more than two million carriers in the UK, cystic fibrosis is the most common life-shortening, inherited disease affecting Caucasians. Currently there is no cure.

causing cystic fibrosis. To put it another way, one child in every classroom, and almost certainly someone you know.

e

Following on from the infant study to help babies through their earliest years, the team hope to roll out a broader outreach project, the ‘frequent flyer programme’.

This innovative scheme revolves around physiotherapy care delivered to children with established cystic fibrosis lung disease at their local fitness facility, alongside a

The team use the most advanced equipment to monitor children’s lung function, from ultra-sensitive devices for measuring breath volume, to miniaturised scopes for visualising the tiny airway passages within the lungs themselves.

The research involves testing infants when they are three months old, and again at one year, to detect any decline in the health of the lungs. Early results have been startling – up to 40 per cent of children begin to show signs of lung disease within their first three months. The team’s efforts are now focusing on how to deliver the best possible care for these children, both as infants and as they grow up.

children with cystic fibrosis undertaken to date.

Waiting for children with cystic fibrosis to become unwell is certainly waiting too long.

Thanks to Great Ormond Street Hospital’s pioneering work, today’s affected children face a far better future than at any other time in the long history of this challenging and debilitating disease.

There is a real sense of progress being made as a result of this unique work. The research team are determined to advance medical knowledge with studies that are appropriate for the children involved, and acceptable to their families. By concentrating their efforts on research that responds directly to the needs of the very sickest children seen at the hospital, the cystic fibrosis team is able to present a positive perspective even when confronting parents with the diagnosis of an incurable disease.

third. As well as helping children to feel stronger and more confident in managing their condition, the programme has the potential to achieve significant cost savings owing to the reduced bed days and drugs required to treat them.

J

oe was born 11 weeks early in August 2005 with a brain haemorrhage, which is common in premature babies. The haemorrhage caused a blood clot, which led to the development of hydrocephalus, as the blood clot prevented brain fluid draining around the brain. He was transferred to Great Ormond Street Hospital and spent a week on Parrot Ward, where it was decided that he didn’t need surgery at this point to fit a shunt. He went back to his local hospital for two weeks and then was discharged.

Joe will never be able to be a deep sea diver, as a VP shunt is a closed system.

As such, it reacts to the pressure that the body is under. The limited research available shows that at the tourist level of diving (around four bar, or 40 metres/ 131 feet), the shunt is not changing much.

It’s filled with water which isn’t so sensitive to the pressure (compared with air). However,

via a tube which is inserted under the skin.

It was first developed here at the hospital by a most unexpected team that included the famous author of children’s books, Roald Dahl (see side panel). After the operation, Joe recovered amazingly quickly and was discharged three days later.

Neurosurgeon Jessica Ternier explains why Joe, who was fitted with a shunt after developing hydrocephalus, can’t visit the ocean’s floor

“Why can’t I be a deep

My b ques

t is often mentioned that Great Ormond Street Hospital is considered to be one of the top five children’s hospitals in the world.

The staff are all too aware that the only way to improve and to do what they do best – that is, help sick children – is to constantly be open to new ideas from outside, learning from wherever good

How collaborating with Cincinnati Children’s Hospital Medical Center is benefiting the patients of Great Ormond Street Hospital

world

in the wider

Our place “Quality and safety means the patient gets the treatment first time, every time, and doesn’t have to wait for it,” he adds.

“A hypothetical example of poor quality: I have two patients – one has an abnormal magnetic resonance imaging (MRI) scan and he’s going to be seen very quickly, and the other gets a referral and gets an appointment for a few months’ time. If the hospital wants to offer good quality, it must give access within two weeks because we live in that kind of age. Secondly, when the referral is in, it must be co-ordinated so that the family doesn’t have to jump through hoops, has no delays and gets expert opinions and results.”

its connections with the other children’s hospitals in the UK and also with those in other countries. Peter Lachman, Associate Medical Director for Patient Safety and Consultant in Service Redesign and Transformation, is at the centre of some of these sharing relationships and has been pivotal in working with and learning from Cincinnati Children’s in the United States about safety. “When I came here in 2005, I said to Jane Collins, Chief Executive, that we need to link up with the best, and in terms of quality and safety improvement, they’re the best,” Peter says. “They really lead the way.

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Peter points out that in North America, all the top hospitals are “fighting” with one

“The partnership informs many of the hospital’s improvement projects to achieve its goals of ‘no waits, no waste and zero harm’.”

The partnership informs many of the hospital’s improvement projects to achieve its goals of ‘no waits, no waste and zero harm’, and includes educational sessions, video/online conferences to provide shared learning (on subjects such as pressure sores, ventilator-acquired pneumonia and chronic care), executive visits to both sites and also members of the Transformation team making educational visits to Cincinnati Children’s.

undertaken many years of modernisation in response to national targets and local objectives. Both organisations had made progress in areas of service provision and the aim of the partnership was, and continues to be, to learn from each other’s successes and challenges.

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hygiene results have significantly improved since data reporting was introduced. Providing this data to wards and making the recording of this information as easy as possible makes clinical teams aware of how they’re performing and they can take action where necessary.

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After about a month on ECMO, they said that we needed to take him off. We had two options – a risky operation to put him on a Berlin heart, a sort of mechanical heart, that would give him a few extra weeks to find a

As soon as he arrived, you sensed they knew exactly what to do, and only a few hours later, the doctor said he had to go on ECMO (extracorporeal membrane oxygenation). They say you should only be on ECMO for a maximum of a month because of infections and clots. So they kept trying to wean him off the machine but his heart just wasn’t up to it. They told us we were going to have to put him on a transplant list. My husband, Andrew, was really upset. He couldn’t accept Misha wouldn’t get better, but the staff gave us the space we needed and we came to understand everything better.

O

ur son Misha was born perfectly healthy on 13 July 2009. In the meantime, his sister Mia contracted a virus and passed it on to me. Four days later, Misha started to get marble blueish skin and a temperature. We took him to the local hospital, but they thought it was just a virus and it might go away. During this time I got really sick so I was also checked into the same hospital – I was on one floor and Misha on another. It was at this point that my husband’s brother came and said that I had to go downstairs to see Misha. I started panicking and when I reached him he’d crashed and was actually dead for two minutes. Thankfully, the doctors managed to resuscitate him and he was sent to Great Ormond Street Hospital.

ve Care Unit

ctive:

The staff at Great Ormond Street Hospital are wonderful people who know how to talk to parents. The doctors and nurses aren’t just great professionals, but are amazing people. While I wish this had never happened to Misha, I’m glad I had the opportunity to meet these people.

He was at Great Ormond Street Hospital for nine months. I didn’t leave the whole time in case something happened. We sometimes stayed in the charity-funded accommodation. But Mia was the one who suffered the most. She was coming to us at weekends but she was very little herself.

Still now she gets very upset and you can see the difference the time apart has made.

When it comes to Andrew and myself, the psychotherapist at Great Ormond Street Hospital, Harriet, who was fantastic, said some couples split up during such difficult times. We were the reverse – we grew much closer.

I think Misha was a month on the Berlin heart, then a donor came. I remember thinking about the donor’s parents. For them to donate the organs makes them heroes in my eyes. The transplant operation was remarkably smooth and it was great taking Misha home – we laid him on the couch and he had the biggest grin.

us know how it was going. We did a lot of fighting during that time – our parents were trying to comfort us but you’re so nervous you just walk round in circles. Finally, they turned the Berlin heart on and it worked.

When the surgeon came, I just hugged him like I’ve never hugged anyone before. The next day we got to see Misha and it wasn’t long before we could actually hold him.

I can’t describe how happy I was.

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.