Highlights 2012/13

Highlights 2012/13

The child first and always Great Ormond Street Hospital (GOSH) is one of the world’s leading paediatric research hospitals. Our clinical colleagues and support teams are dedicated to meeting the needs of the patients we treat. In turn, these children, young people and their families inspire us to do all we can to improve the health of children here, across the UK and around the world.

Two-year-old Dwayne has a Wilms’ tumour and is at the hospital for chemotherapy. He has lots of energy and loves playing football with his big brother.

61,000

procedures performed

90%

of staff would recommend the hospital

50

220,000 3,482

specialties

8,155

Foundation Trust members (excluding staff)

patient visits

25%

more clinical trials this year

staff

96%

500 +

of parents and patients would recommend the hospital

active research projects

1,315

outpatient clinics

18

highly specialised national services

Welcome from the Chairman and Chief Executive Great Ormond Street Hospital is a specialist tertiary hospital with 50 different clinical specialties. Many of the patients we treat have rare, complex or life-limiting conditions and are referred to us by other hospitals that do not have our specialist expertise.

Demand for our services is increasing. With a national move towards fewer, larger centres, the hospital is treating more patients than ever before.

This report highlights some of the developments at the hospital over the past year, which was our first full year as an NHS Foundation Trust.

Our top priority is to provide high quality and safe care. We also want families to have an excellent experience while they are at the hospital. We are always trying to improve what we do and to find new and better ways to treat the children and young people in our care.

Baroness Blackstone Chairman

Our advocacy ratings among patients, families and staff remain among the highest in the NHS, yet there are always things we can do better. Sharing knowledge and learning from mistakes is an important part of what everyone who works in healthcare must do. We publish an annual Quality Report, which gives more information about our three priorities of quality and safety, clinical outcomes and patient and family experience. Please download a copy of this from our website, www.gosh.nhs.uk Research and innovation is central to what we do, and the NIHR Biomedical Research Centre at the hospital and University College London is the only such centre in the UK focusing on paediatrics. There is some research information in this guide but more is available from our Research Review, which again is available on our website.

In 2012 we opened the Morgan Stanley Clinical Building. It is the first of two buildings that together form the Mittal Children’s Medical Centre, with the second building, the Premier Inn Clinical Building, due to open in 2017. This is a pivotal phase in the redevelopment of the hospital, which aims to provide much better facilities for inpatients and their families, and to allow the hospital to treat even more children.

Jan Filochowski Chief Executive

The hospital’s redevelopment, much of our research, medical equipment and support for families is funded by our charity and the generosity of thousands of individuals, companies and trusts and foundations. Thank you to all of you.

Thank you to all of our staff for your expertise and dedication in treating the children and young people who are our patients, along with their parents whose courage in adversity is inspiring.

Key achievements The team has now performed more than 500 heart and/or lung transplants.

The team performed 547 bypass procedures, the highest number ever carried out within a single year.

The Inherited Cardiovascular Diseases service, specialising in the diagnosis, evaluation and management of children and young people with genetic cardiac conditions, saw more than 2,000 outpatients.

New research led by the UCL Institute of Child Health established the first global benchmarks for assessing lung function in different age and ethnic groups, after collating data from more than 74,000 healthy non-smokers aged three to 95 years old from around the world.

Dr Mark Peters, Intensive Care Consultant, led a 12-strong Xtreme Everest children’s expedition up Mount Everest, with the aim of helping researchers better understand how to treat children in intensive care with low oxygen in their blood.

The Division also established a Combined Critical Care Research Unit.

Arsenal fans Ronni, four, and Fredi, six, are brothers and both have cystic fibrosis. They are staying for two weeks to receive IV antibiotics, in between playing Skylanders!

Critical Care and Cardio-respiratory The Critical Care and Cardio-respiratory Division at Great Ormond Street Hospital (GOSH) provides medical and surgical treatment to children with congenital and acquired heart disease and children with acute or chronic lung disease or complex respiratory conditions.

The Division also has the largest paediatric intensive care service in Europe, comprising a Paediatric Intensive Care Unit (PICU), Neonatal Intensive Care Unit (NICU) and Cardiac Intensive Care Unit (CICU), as well as the largest dedicated children’s acute transport service (CATS) in the UK. In summer 2012, the CICU, Cardiology Services and respiratory laboratories moved into the new Morgan Stanley Clinical Building, the first part of the Mittal Children’s Medical Centre, offering additional space, greater privacy for families and an improved working environment for the clinical teams.

Resting children’s hearts can delay the need for transplant The Cardiac team at GOSH is one of the first in Europe to pioneer a technique to ‘rest’ children’s hearts.

The treatment involves using a Berlin Heart, (a device used in children whose hearts are no longer strong enough to pump enough blood around their bodies), to keep a child alive while their real heart is allowed to recover – after which the Berlin Heart is removed.

Dr Mike Burch.

Dr Mike Burch, Paediatric Cardiologist and Director of Cardiothoracic Transplantation, says that GOSH has used the technique on four children experiencing heart failure over the past 18 months.

“The Berlin Heart is usually used to keep a child alive until we are able to do a transplant. But in some cases you can support and rest the heart, and then over a number of weeks there will be a recovery of function,” Dr Burch says.

He is optimistic that the treatment can potentially enhance children’s quality of life for a significant number of years before the need for a transplant returns.

“After we remove the Berlin Heart, the child can usually go home and get back to normal life, including school and gentle exercise.”

Neurosciences Great Ormond Street Hospital (GOSH) has the largest integrated neurology, neurosurgery and neurodisability service in the UK, providing care for children with disabilities, tumours and diseases affecting the central nervous system. The department also includes Opthalmology, Child and Adolescent Mental Health Services, Neuropsychology, Neurophysiology, General Paediatrics and the Clinical Site Practitioners.

In 2012, GOSH became one of four centres to be designated as a Children’s Epilepsy Surgery Service. This followed the Government’s Safe and Sustainable Children’s Neurosurgical Services Review, which highlighted the need for more epilepsy surgery to take place in England.

GOSH is currently the largest provider of paediatric epilepsy surgery assessment and treatment in the UK.

Successful shunt operation for hydrocephalus Children with hydrocephalus, a condition which causes excess fluid on the brain, are the largest patient group treated within the Neurosurgery department at GOSH. Treatment is in the form of a shunt – a device inserted during surgery to divert the accumulated fluid away from the brain and back into the bloodstream.

Sam was born with hydrocephalus (water on the brain). Since his operation to have a shunt fitted, he’s back to being an active little boy who loves tumbling around the garden.

After one-year-old Sam underwent surgery in December 2012, his parents Elizabeth and James, noticed an improvement almost immediately.

“Before the operation he would barely eat,” Elizabeth says: “so it was amazing to see him tucking into his Christmas lunch just four days after his operation. We are enormously grateful to the surgical team and staff on Koala Ward for the fantastic care they gave to Sam. They didn’t just look after Sam, but us too.”

Key achievements oala Ward reduced medication K prescribing errors by over 25 per cent over a four-month period.

The project won at the Network Casebook II Awards at the Health Innovation Expo Conference in March 2013.

The Neuromuscular team secured a place on the Patient and Family Centred Programme to improve the pathway for ambulant boys with Duchenne muscular dystrophy, specifically focusing on communication before, during and after appointments. In the last five months, no appointment has been reported as being delayed by more than 30 minutes.

The Muscular Dystrophy Campaign recognised the Neuromuscular service as a Paediatric Centre for Research and Clinical Excellence. This was the only paediatric centre in the UK to achieve this recognition.

Laurie, with mum, Angela, on Koala Ward.

Laurie has been coming to GOSH since he was a baby.

Key achievements Every year, 37 per cent of the patients admitted to GOSH undergo surgery. Staff see 43,000 outpatients a year and over 11,000 children and young people are admitted for treatment each year.

Last year, four additional consultant surgeons were appointed in maxillofacial surgery, ear, nose and throat surgery, paediatric surgery and urology.

Alongside these new appointments a new short-stay ward was opened.

After an improvement project focussed on the spinal service, the team implemented a comprehensive spinal pathway for children and opened four high dependency beds.

The Audiology team have undertaken a complete service re-design and are on target to reduce the assessment part of the treatment down to a two-week average.

Darcey-Belle is on Dinosaur Ward.

She has blocked mucus glands and is going to have surgery to remove lumps from her mouth.

Surgery The Surgery Division at Great Ormond Street Hospital (GOSH) covers a wide range of specialist surgical and related services, as well as theatres and the Anaesthetic Department. The specialist services include Orthopaedic and Spinal Surgery, Urology, Neonatal and Paediatric Surgery, Pain Control, Audiology, Ear, Nose and Throat, Dental, Maxillofacial, Plastic Surgery, Craniofacial and Cleft Lip and Palate. The Surgery Division includes the nationally-funded services for Craniofacial Surgery and Bladder Exstrophy.

Surgery to separate conjoined twin girls

It’s hard to believe that twins Ruby and Rosie were born conjoined.

Now they are the picture of health thanks to Professor Pierro and his team.

GOSH is the most experienced centre in Europe for the management of and, if necessary, the separation of conjoined twins.

In July last year, a team of specialist paediatric surgeons and anaesthetists, led by Professor Agostino Pierro, undertook a challenging operation to separate conjoined twins Ruby and Rosie. The twins were joined at the abdomen and were separated on their second day of life in an operation that took approximately five hours. They spent five days in intensive care before being transferred to a ward.

Professor Pierro, Consultant Paediatric Surgeon said: “In this case, the twins were joined by the abdomen and shared part of the intestine. The operation to separate the twins had to be performed as an emergency because of an intestinal blockage. Any separation of conjoined twins requires expertise, which I and the team have developed over many years in this hospital.”

Medicine, Diagnostic and Therapeutic Services The Medicine, Diagnostic and Therapeutic Services (MDTS) Division at Great Ormond Street Hospital (GOSH) includes Gastroenterology, Endocrinology, Metabolic Medicine, Renal, Genetics, Adolescent Medicine, Radiology, Pharmacy, Therapies, Psychosocial and Family Services.

Cystic fibrosis Frequent Flyer programme Children with moderate to severe cystic fibrosis (CF) who enrolled on a programme offering physiotherapy, dietary support and personal training sessions at their local gym were found to spend less time in hospital receiving antibiotics, as well as boosting their exercise capacity. The pilot Frequent Flyer programme is estimated to have saved the hospital around £7,000 per patient per year.

Tom has cystic fibrosis, a genetic condition in which the lungs and digestive system become clogged with thick, sticky mucus. Since taking part in GOSH’s Frequent Flyer programme, he feels fitter, healthier and spends much less time in hospital.

Sean Ledger, Specialist Physiotherapist, said: “This was a small-scale trial with promising results, and we have now launched a larger randomised controlled trial, called INSPIRE-CF to validate the results and recruit more children onto our tailored fitness programme. If our positive results could be replicated in other hospitals across the UK, the implications for cost savings to the NHS, along with improving the quality of life for children living with cystic fibrosis, would be extensive.”

This was a cross collaborative programme between the Cardio-respiratory and MDTS Divisions.

Key achievements MDTS developed a successful pilot study of home haemodialysis. This led to the roll-out of the service for children as small as 10kg, using portable equipment that is unique to GOSH. ImproveCareNow, an international health network that shares learning and best practice to improve treatments for children with inflammatory bowel disease, demonstrated that GOSH is performing well for this patient group.

The team expanded its metabolic newborn screening programme to include five additional disorders, meaning patients with metabolic disorders can be diagnosed and treated sooner.

New metabolic clinics were established to support 16–18 year olds making the transition to adult care.

The imaging service achieved re-accreditation for paediatric imaging through the United Kingdom Accreditation Service.

An on-call service for Interventional Radiology was successfully implemented, ensuring patients have access to clinical experts 24 hours a day.

The pharmacists made a significant contribution to reducing medicine errors.

They also improved the safety of medicines by implementing fingerprint recognition for accessing medicines on the wards.

Charlotte, 12, is waiting for the results of a video capsule endoscopy. This involves swallowing a capsule containing a tiny light and camera, which transmits pictures of the digestive system to a data recorder worn on a belt around the waist. Charlotte is excited to see what she looks like inside!

Key achievements The Arthritis Research UK Centre for Adolescent Rheumatology opened. It is the world’s first research centre dedicated to understanding how and why arthritis affects teenagers.

The ICI-LM Division became part of a national chemical pathology pilot scheme to screen newborn babies for five more diseases.

The Rheumatology team doubled their discharge summary completion rate.

Ward-based pharmacists were introduced, reducing prescribing errors by 32 per cent on Fox and Robin Wards and 50 per cent overall.

The time from when a patient arrives to when they start chemotherapy has reduced from eight hours to four hours.

Letter turnaround in ICI-LM has improved from an average of 37 days to seven days.

One-year-old Jessica had a rare rhabdoid tumour removed and is now receiving chemotherapy. Jesscia loves to be pushed up and down the hospital corridor on her pink scooter.

Infection, Cancer, Immunity and Laboratory Medicine The Infection, Cancer, Immunity and Laboratory Medicine (ICI-LM) Division at Great Ormond Street Hospital spans a wide range of services and specialties including Dermatology, Rheumatology, Immunology, Infectious Diseases, Haematology, Oncology, Bone Marrow Transplant, Haemophilia, Palliative Care and Laboratory Medicine. The Division does a lot of research, aiming to increase the number of patients involved in clinical trials and to strengthen links with our academic partners in the UCL Institute of Child Health and beyond.

Breakthrough in rare skin disorder A study led by Paediatric Dermatologist, Dr Veronica Kinsler, has identified the gene responsible for a rare condition known as multiple congenital melanocytic naevi, or CMN, which causes large moles to grow on the skin and which increases the risk of melanoma. No treatment is currently available for patients who have many large CMN, but doctors monitor patients carefully for signs of skin cancer.

Fay has congenital melanocytic naevi. She is a bright bubbly girl who enjoys competition dancing and swimming.

The study discovered that in the majority of patients, this condition is caused by a faulty gene, which occurs while the baby is growing in the womb during pregnancy. This gene mutation was found in four out of five patients who took part in the study.

Dr Veronica Kinsler says: “This is a big breakthrough for people who have CMN. The discovery of the genetic mechanism means we can now develop tests to differentiate between people carrying this gene and those who don’t, and finally we can start to look for new ways to treat this condition.”

International and Private Patients Great Ormond Street Hospital International and Private Patient Service (IPP) is based in the Harris International Patient Centre. This is a state-of-the-art unit where we care for private patients and children who travel from abroad who have complex and rare conditions.

The hospital treats a number of patients who are referred to us privately. Most of these patients come from the Middle East but we do treat patients from all over the world. The majority of patients are paid for by their government because the treatments that they need are not available in their home country. It can be very daunting to travel overseas for treatment, away from family and friends, so the team do all they can to make patients and families feel welcome, such as providing staff who can speak with the families in their own language and celebrating birthdays and religious festivals such as Eid and Christmas.

Bringing sound and joy to a little boy and his family Abdul came to the hospital from Kuwait when he was two weeks old. Although he was under the care of the Endocrinology department it quickly became clear that he also had a secondary condition called Usher’s 1, which affects his hearing. This impacted on Abdul’s balance, his ability to walk and communicate.

Dr Kaukab Rajput, Paediatric AudioVestibular Physician said: “we had to convince the parents and the Kuwait Health Office that Abdul needed to have the secondary treatment to ensure he could have the best quality of life possible.

Abdul is four years old and he is from Kuwait. He likes to play with other children, paint and read interesting books.

“The cochlear implant is a surgically implanted electronic device that provides a sense of sound to a person who is deaf, enabling them to hear sound and voices thus allowing them to communicate with people better.

“Abdul’s parents were overjoyed. They were finally able to talk to him and see his reactions to their voices. The parents were fantastic in that they followed all the advice we gave them and by following a programme of training set by the team, Abdul is able to speak and communicate like a normally hearing child and is excelling at school.”

Key achievements Bumblebee and Butterfly Wards opened additional beds so that more patients can be treated, taking the total up to 43.

Earnings from treating private patients increased, which enabled us to use the money to benefit our NHS patients.

Two dedicated Arabic websites for patients and their families in Kuwait, United Arab Emirates and the rest of the Gulf Region were launched. They allow the growing numbers of the hospital’s Arabic-speaking visitors and regional partners from the Middle East to find all relevant information in their preferred language.

The division treated children from over 60 different countries in 2012/13.

Nine-year-old Ionatan has protein-losing enteropathy, which results in an excessive loss of protein in his body. He is very popular with everybody on the ward, and is very happy to be posing with his sister, Genoveva, in the playroom.

Research Great Ormond Street Hospital (GOSH) has always been at the forefront of research to improve child health. Our research is integral to the clinical care that we provide and aims to find diagnoses, treatments and cures for some of the most complex conditions, to benefit children here in the UK and worldwide.

Key achievements Over 500 research projects were carried out at GOSH and the UCL Institute of Child Health, our academic research partner.

Over 2,000 patients were recruited to participate in National Institute for Health Research Clinical Research Network Portfolio studies, a grouping of high-quality clinical research studies, an increase of 20 per cent on the previous year.

The Somers Clinical Research Facility has continued to play a central role in delivering a growing volume of clinical and especially experimental medicine research within the Trust.

This year the number of clinical trials conducted in the facility grew by 25 per cent.

The National Institute for Health Research confirmed a further five years’ funding for the Biomedical Research Centre.

Right: leukaemia cells under a microscope.

Improving clinical outcomes for craniosynostosis Earlier this year, Mr David Dunaway, Consultant Plastic Surgeon and Mr Owase Jeelani, Consultant Paediatric Neurosurgeon, embarked on a project that aims to improve the clinical outcomes for children born with a rare condition known as craniosynostosis. Here they talk about this condition and their ambitious five-year programme of research called Face Value.

What is craniosynostosis?

Owase Jeelani and David Dunaway.

Photo: Kalpesh Lathigra for The Times.

Craniosynostosis is a rare facial condition in which different sections of the baby’s skull fuse too early during pregnancy. This can stop the baby’s head and face from growing and developing normally, which can cause problems such as build-up of pressure, breathing difficulties, visual impairments and eating problems.

How is craniosynostosis treated?

Currently, we carry out surgery to try and correct the shape of the baby’s head.

While this has improved outcomes, children require a number of operations and an external frame fitted to their head, which can be cumbersome. We believe there is a need to improve surgery for these children.

What will you do in Face Value?

Through a series of projects the Face Value team will explore innovative devices and procedures for surgery. Initially we are collecting information on face shapes.

At the moment the team has no exact way of knowing how successful the operation is for restoring normal shape. The information on face shapes will give us a baseline for what is considered ‘normal’. Following that we will develop devices that will allow the head to be shaped in a particular direction and thus remove the need for the external frame.

How will this improve outcomes for children?

Our aim is to make these operations for children more accurate, safer and less invasive. The information collected on face shapes will help the team to plan operations better, moving away from a ‘one shape fits all’ approach, towards surgery which is tailored to each child’s unique face shape. The devices will make surgery less invasive and also provide better control of how the face is shaped. These approaches will allow us to restore more accurately the shape of a child’s head, which we hope will significantly improve their day-to-day lives.

Our 2012 staff awards winners No Waste Champion Justin Buys, Administrator, Pain Control Service Colleague of the Year Simon Hadley, Clinical Systems Manager, Radiology Transformation Award Mark Davis and the Portering team The Gwen Kirby Award given by the Nurses League Melissa Strickland, Ward Sister for Koala Ward The Patricia Lewisohn Award for Excellence in Customer Care Marion Exley, Personal Assistant in Neurosurgery Manager of the Year Ghislaine Stephenson, Lead Nurse, Paediatric Intensive Care Unit Child and Family Award Kate Cross, Consultant Neonatal and Paediatric Surgeon Christine Tushingham memorial award Karen Walker Team of the Year Squirrel Ward, managed

by Helen Ingall For our 2013 winners, please go to our website www.gosh.nhs.uk

Nurse Sophie Chung on Squirrel Ward, with patient Shayla who is recovering from bladder augmentation and Mitrofanoff surgery.

Our people The people who work at Great Ormond Street Hospital (GOSH) are the key to our success.

Our annual staff awards saw over 200 nominations for individuals and teams from across the hospital. Nominations from children and families describe our staff as “dedicated” and “exceptional”. Our challenge is to provide the environment and tools for everyone who works here to be exceptional, and for that quality to be demonstrated within every service.

We are committed to getting the basics right – to recruit and retain, manage and motivate our staff, and to do so while retaining high standards and within a financially challenging environment.

In our annual staff survey we were delighted that 90 per cent of staff said that they would recommend the hospital to a friend or relative.

Learning and education remain key priorities and in 2012–13 over 3,600 staff accessed some form of in-house learning with more than 12,500 course places filled.

GOSH hosts more children’s nursing students than any other NHS organisation and this year saw our highest ever number.

We reviewed our programme of preceptorship for newly qualified nurses this year, increasing timely success by over 50 per cent. In addition, over 40 nurses graduated with undergraduate or postgraduate degree awards – our best year ever.

The Postgraduate Medical Education team designed and delivered two major educational initiatives designed for multi-professional groups.

These included the development of complex simulation scenarios and a multi-player computer game. The team also continued to support junior doctors in training, and consultants to develop their educational supervision role.

Over 200 staff went through some level of leadership training during the year. A number of team events were designed and delivered to support transition through change, team-building, leadership at all levels, human factor awareness and improvement methodology. Each event is evaluated and followed up to ensure outcomes are sustained in the workplace.

The Trust’s online learning portal continued to evolve and expand, offering 24/7 access to educational information and online learning.

Who our employees are Scientific staff 7% Clinical support staff 11%

Administration and managers 20%

Therapy staff 10% Doctors 15%

Facilities staff 4% Nurses 33%

Our buildings Our ambitious four-phase redevelopment programme aims to rebuild two-thirds of the hospital site over a 20-year period.

Phase 2A The Morgan Stanley Clinical Building

Phase 2B The premier inn Clinical Building

Phase 3A The Centre for Children’s Rare Disease Research

The Morgan Stanley Clinical Building, the first part of the Mittal Children’s Medical Centre, was officially opened

by Lord Coe KBE and Baroness Grey-Thompson in June 2012.

Three of the hospital’s largest specialties, cardiac, renal and neurosciences, have moved into the new building and have experienced a huge difference, with larger ward space and facilities and cutting-edge equipment.

Phase 2B of the redevelopment programme, the new Premier Inn Clinical Building, is due to be opened in 2017 and will involve redeveloping and refurbishing the current Cardiac Wing. It will house a new surgery centre, and inpatient wards for clinical specialties including rheumatology, dermatology, infectious diseases, neurosciences and cardio-respiratory.

Phase 3A of the redevelopment programme will see the hospital build the Centre for Children’s Rare Disease Research. This will be a world-class multidisciplinary centre of excellence that will bring together clinicians from Great Ormond Street Hospital and researchers from the UCL Institute of Child Health.

The new building has provided vastly improved facilities for patients and parents, including more space and privacy, private bedrooms and en-suite facilities.

For many families who visit us, it has become a home away from home.

The two clinical buildings will be connected floor by floor, allowing the most effective flow of patients and staff between similar facilities.

Phase 2B will realise the hospital’s vision to provide modern facilities for all our acute inpatients, including space for a parent or carer to stay comfortably by their child’s bedside.

Using cutting-edge technologies, the centre will focus on better understanding certain types of rare diseases and rapidly translating these findings into treatments for our patients.

The new purpose-built research centre will house laboratories, manufacturing facilities and clinical offices.

The development will also provide much-needed outpatient clinical space, completing the translational research circle from pure research to practical patient treatment.

Phase 2A The Morgan Stanley Clinical Building Phase 2 – The Mittal Children’s Medical Centre comprises the Morgan Stanley Clinical Building and the Premier Inn Clinical Building

Phase 2B The Premier Inn Clinical Building

Phase 3A The Centre for Children’s Rare Disease Research

Healthcare assistant James Price with two-year-old Amie, a regular visitor to Squirrel Ward.

Where our money comes from Education and training £9,802

Other income £20,567

Research and development £19,682 Non-NHS patient care income £46,535

£000s

NHS patient care income £261,687

How we spent it Other £42,912 Depreciation £17,798 Premises £23,571

£000s Other clinical supplies and services £45,086

Medicine £36,367

Staff £190,092

Our milestones

Morgan Stanley Clinical Building opening Lord Coe and Baroness Grey-Thompson opened our new state-of-the-art facility, which forms the first part of the Mittal Children’s Medical Centre.

Children’s Acute Transport Service accreditation The Children’s Acute Transport Service (CATS) received accreditation from the Commission on Accreditation of Medical Transport Systems Board, the only service in Europe with this accreditation. CATS provides intensive care facilities in a mobile setting, transporting patients to Great Ormond Street Hospital (GOSH).

London 2012

BBC2 documentary series

We were honoured to be involved in the London 2012 Olympic opening ceremony and would like to thank Danny Boyle for giving the hospital the opportunity. It was a very special moment in our proud history.

The BAFTA-nominated documentary series, Great Ormond Street, gave remarkable access to clinical teams at the hospital, featuring some of our most difficult and complex cases.

Biomedical Research Centre

New research centre for teenagers with arthritis

The National Institute for Health Research confirmed a further five years’ funding for the Biomedical Research Centre. Scientists at the BRC conduct experimental and translational biomedical research that brings basic laboratory scientific advances into the clinical setting to maximise patient benefit.

The Arthritis Research UK Centre for Adolescent Rheumatology opened in the UK. The world’s first research centre dedicated to understanding how and why arthritis affects teenagers is a collaboration between UCL, University College Hospital and Great Ormond Street Hospital Children’s Charity.

£10m funding boost for The Centre for Children’s Rare Disease Research A £10 million award from the UK Research Partnership’s Investment Fund was a significant step towards raising the £85 million needed to build and equip the new centre.

New Chief Executive Jan Filochowski, one of the UK’s most respected and experienced NHS chief executives, became the new Chief Executive Officer for GOSH.

Patient Christmas parties

Staff awards

Over 2,000 patients and families enjoyed this year’s patient Christmas parties, which are organised by Great Ormond Street Hospital Children’s Charity.

Over 200 nominations were received for staff and nine awards given out at the hospital’s annual staff awards ceremony, which celebrates the outstanding contributions made by staff to the hospital and its patients.

Leading the way in clinical research studies GOSH was named in the top three acute specialist trusts in providing opportunities for patients to take part in clinical research studies.

The first child stem cell-supported trachea transplant patient doing well two years on Ciaran Finn-Lynch, the first child to undergo a stem cell-supported trachea transplant was reported to be functioning well two years on, according to a paper published in The Lancet.

Our milestones continued

Europe’s first birth defects research centre The Newlife Birth Defects Research Centre, based at the UCL Institute of Child Health, opened in October 2012. The centre is dedicated to researching the causes of birth defects, advancing their diagnosis and treatment and preventing such conditions in the future.

UK Newborn Screening Programme Centre hosted by GOSH celebrates 10th year The UK Newborn Screening Programme Centre (UKNSPC) has played an integral and crucial role in developing and delivering the national blood spot screening programme.

By identifying babies who may have rare and serious conditions during pregnancy, babies can receive early treatment, improving their health and preventing severe disability or even death.

Prince of Wales visit

BAFTA win

In February 2013 HRH The Prince of Wales visited staff, patients and supporters.

The documentary Me, My Dad and His Kidney, which followed nine-year-old Raphael as he prepared for, and underwent, a kidney transplant at GOSH, won a BAFTA.

Patients triumph at British Transplant Games

International recognition for GO Create!

Heart and renal transplant patients took part in the 2012 British Transplant Games in Medway and won lots of medals.

Go Create! the hospital’s arts programme, was cited as an example of best practice in a European policy glossary, Learning for Wellbeing: A Policy Priority for Children and Youth in Europe. GO Create! makes a vital contribution to the healing environment and hospital experience we provide for patients, visitors and staff.

New laser treating vascular birthmarks

Professor Viner led research into children with meningitis

GOSH patients featured in Tourette’s documentary

A more powerful and effective laser machine is being used to treat patients with vascular birthmarks.

New research highlighted the long-term, often hidden, after-effects of meningitis in children.

Callum, Connor and Marco featured in an ITV programme, Kids with Tourette’s – In Their Own Words. The documentary followed the boys through six months of treatment at GOSH.

Health for Life wins gold The GOSH Health4Life campaign, which promotes regular exercise and healthy eating for NHS staff, was awarded a Gold NHS Accreditation Award.

Amniotic fluid stem cells repair gut damage Findings from a study pave the way for a new form of cell therapy to reverse serious damage from inflammation in the intestines of babies.

BBC Horizon: The Age of Big Data A BBC Horizon programme featured Professor Phil Beales and GOSH patient Jake looking at how molecular testing and gene sequencing are helping clinicians to diagnose rare conditions, and give both doctors and patients a better understanding of their unique genetic make-up.

Great Ormond Street Hospital Board of Trustees 2012/13 Non-Executive Directors

Trust Board Executive Directors

Baroness Blackstone BSc (Soc) PhD Chairman of the Trust Board and Members’ Council

Ms Mary MacLeod OBE MA CQSW DUniv Non-Executive Director and Senior Independent Director

Mr Charles Tilley FCA, FCMA, CGMA Non-Executive Director and Deputy Chairman

Mr David Lomas Non-Executive Director

Mr John Ripley Non-Executive Director Ms Yvonne Brown LLB Solicitor Non-Executive Director

Professor Andrew Copp MBBS DPhil FRCPath FMed Sci Non-Executive Director until 31 December 2012

Professor Rosalind Smyth FMEDSCI Non-Executive Director from 1 January 2013

Mr Jan Filochowski Chief Executive from 8 November 2012

Mrs Claire Newton MA (Cantab) ACA MCT Chief Finance Officer

Jane Collins MD MSc FRCP FRCPCH Chief Executive until 31 August 2012

Mrs Elizabeth Morgan MSc RN Adult RN Child RNT RCNT Dip N IHSM Diploma Chief Nurse and Director of Education

Dr Barbara Buckley MB BS FRCP FRCPCH Co-Medical Director

Ms Fiona Dalton MA (Hons) (Oxon) Chief Operating Officer/ Deputy Chief Executive and Interim Chief Executive 1 September – 7 November 2012

Professor Martin Elliott MB BS MD FRCS Co-Medical Director

Mr Robbie Burns Interim Chief Operating Officer 1 September – 7 November 2012 and 4 March – 31 March 2013

Great Ormond Street Hospital Foundation Trust Members’ Council The role of the Members’ Council is to hold the Board of Directors to account and ensure that the views of the hospital’s patients and the wider community are heard.

Edward Green Patients outside London

Stuart Player The rest of England and Wales

George Howell Patients outside London

Julia Olszewska The rest of England and Wales

These were the Councillors in 2012–13 with the constituencies they represented listed.

Mason Moore (until 30 January 2013) Patients from London

Daniel Dacre Staff

Sophie Talib Patients from London Matthew Norris Parents and carers from London Lynne Gothard Parents and carers from London Lisa Chin-A-Young Parents and carers from London

Mary De Sousa Staff Jilly Hale Staff Clare McLaren Staff Dhimple Patel Staff

Claudia Fisher Parents and carers outside London

John Carrier (until 31 October 2012) NHS North Central London (Camden PCT)

Camilla Pease Parents and carers outside London

Jenny Headlam-Wells London Borough of Camden

John Charnock Parents and carers outside London

Christine Kinnon University College London, Institute of Child Health

Lewis Spitz North London and surrounding area Trevor Fulcher North London and surrounding area Rebecca Miller North London and surrounding area Ian Lush North London and surrounding area Louise Clark South London and surrounding area

Jo Sheehan (until 22 February 2013) National Specialised Commissioning Team Fiona Price-Kuehe (until 17 February 2013) Expert Patient Programme Community Interest Co. Muhammad Miah The Children’s Hospital School at Great Ormond Street and UCH

Great Ormond Street Hospital for Children NHS Foundation Trust Great Ormond Street London WC1N 3JH www.gosh.nhs.uk   facebook.com/GreatOrmondSt   twitter.com/GreatOrmondSt Thank you to everyone who was interviewed for, or gave permission for their picture to be used in this report, as well as the many members of Great Ormond Street Hospital staff who helped during its production.

This Highlights Report is available to view at www.gosh.nhs.uk

Nurse Sophie Bowman with Katie, four, who has been diagnosed with neuroblastoma and is receiving chemotherapy on Elephant Ward.