Highlights 2013/14 from Great Ormond Street Hospital

Highlights 2013/14

Great Ormond Street Hospital for Children NHS Foundation Trust • Highlights 2013/14 • 1

2 • Great Ormond Street Hospital for Children NHS Foundation Trust • Highlights 2013/14

The child first and always Great Ormond Street Hospital is one of the world’s leading paediatric research hospitals.

Everyone at the hospital is 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.

Three-year-old Finn in the Cochlear Implant treatment room

Great Ormond Street Hospital for Children NHS Foundation Trust • Highlights 2013/14 • 1

1,558

97%

50

outpatient clinics

of parents and patients would recommend the hospital

specialties

825

8,024

scientific papers contributed to by clinicians

Foundation Trust members (excluding staff)

696

active research studies

63,014

240,000

patient visits

87%

of staff would recommend the hospital as a place to receive treatment

3,636

permanent and fixed-term staff

procedures performed

19

highly specialised national services

Welcome Baroness Blackstone Chairman

Mr Julian Nettel Interim Chief Executive

‘The child first and always’ is at the heart of everything that Great Ormond Street Hospital does. Since we first opened our doors in 1852, we have been dedicated to improving children’s healthcare by finding new and better ways to treat childhood illnesses. As our expertise has grown, so has the demand for our services, and we continue to work hard to ensure that we can meet the expectations of the patients and families for whom we are often the last hope.

The hard work of our staff is demonstrated by this report, which highlights some of the developments and breakthroughs we have made across all of our clinical divisions during 2013/14. Their passion and commitment ensures that we can maintain our high levels of patient care and satisfaction, which is reflected by our high advocacy ratings. However, there are always improvements to be made, and we constantly aim to develop our performance in our three key priorities: quality and safety, clinical outcomes, and patient and family experience. More information on this work can be found in our annual Quality Report available from our website www.gosh.nhs.uk We are in the process of developing our new five-year strategy, which will be published in 2014/15. We are doing this by engaging the Members’ Council, the UCL Institute of Child Health, Great Ormond

Street Hospital Children’s Charity, and our patients and carers through the Foundation Trust membership so we can ensure that our plans for the future meet the needs of our key stakeholders.

Work continues apace on the hospital’s redevelopment programme, which will replace outdated and impractical buildings with state-of-the-art facilities and increased space for us to treat the growing number of patients who require care at the hospital.

The new buildings will also facilitate clinicians and researchers to work side-byside so they can continue to develop and deliver the latest treatments and move us closer to our ambition of being a research hospital rather than a hospital that does research. One of the most powerful expressions of translational research in action will be the new Centre for Research into Rare Disease in Children, scheduled to open in 2018.

Despite the severity and complexity of the conditions that our children and young people have, Great Ormond Street Hospital is an inspiring place. This is thanks to the courage of our patients and their families, but also to our staff, our many supporters through Great Ormond Street Hospital Children’s Charity and the hundreds of dedicated volunteers who donate so much of their time. We would like to thank them all for their invaluable contribution.

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Our milestones Kindness of stranger gives boy life-saving gift Tom Higgs was the first patient at Great Ormond Street Hospital (GOSH) to receive an altruistic kidney donation. Tom and donor Roger Sutton waived the anonymity that surrounds transplants to highlight the benefit of giving an organ and saving a life.

Former GOSH patient climbs Everest in name of medical science Jack was one of 12 youngsters who took part in Xtreme Everest 2. The group trekked to the foothills of Mount Everest as part of a study to investigate how the body adapts to low oxygen levels. The research will be used to help patients in intensive care.

Vision for nursing

Rare diseases in the spotlight

As part of the NHS England Chief Nurse’s vision for Compassion in Practice, the hospital’s Chief Nurse Liz Morgan launched the GOSH vision for nursing, which encompasses six values: commitment, care, compassion, competence, communication and courage.

GOSH hosted the launch of the first UK Strategy for Rare Diseases, which aims to build understanding of rare diseases, support patients and families and boost research. The Centre for Research into Rare Disease in Children is being built, which will play a key role in developing new therapies for rare disorders.

Hospital patients and staff receive WellChild Awards

‘Blood-washing’ allows transplant patients to receive incompatible kidneys

Hospital staff and patients were recognised at the WellChild Awards, a ceremony that celebrates the courage of children coping with serious illnesses, and shows appreciation to those who go the extra mile to help these children and their families.

4 • Great Ormond Street Hospital for Children NHS Foundation Trust • Highlights 2013/14

A new method that strips a patient’s blood of antibodies (proteins) has allowed GOSH surgeons to transplant kidneys from blood-group incompatible donors. Four patients, including Maya (left), have had this treatment so far.

Genetic cause of rare bone disorder discovered

Announcement of new Premier Inn Clinical Building

The genetic cause of LenzMajewski syndrome, a rare condition affecting bone and brain development, was discovered in a study led by the UCL Institute of Child Health.

The findings could help in the development of future therapies to treat other conditions.

Whitbread Hotels and Restaurants pledged £7.5 million towards the construction of the Premier Inn Clinical Building, which will form the second part of the Mittal Children’s Medical Centre.

Winning gold at the World Transplant Games

Visit from Archbishop Desmond Tutu

Three transplant patients from GOSH, including Flora (left), won gold medals in badminton, swimming and tennis at the 19th World Transplant Games, which took place in Durban, South Africa. The event saw over 1,500 athletes compete in more than 50 events.

The Most Reverend Desmond Tutu paid a visit to staff, patients and families at the hospital in January 2014. He met with children and families on Koala and Bear Wards, and visited the hospital’s chapel, St Christopher’s.

GOSH wins Patient Safety Award

500 heart and lung transplants milestone reached

The Health Service Journal and Nursing Times 2013 Patient Safety and Care Integration Awards recognised the hospital’s work to achieve Zero Harm with a Patient Safety in Paediatrics Award.

Doctors at the hospital performed their 500th transplant involving hearts and lungs since the very first heart transplant was performed at GOSH in April 1988. The figure includes a total of 351 heart transplants, 68 lung transplants and 81 heart and lung transplants.

Great Ormond Street Hospital for Children NHS Foundation Trust • Highlights 2013/14 • 5

“ Correcting the immune deficiency usually takes care of the cancer�

George with mum Jo

Successful bone marrow transplant to treat rare condition When George was referred to GOSH in 2012, doctors found that he had a fistula (an abnormal passageway linking two organs) between his bowel and bladder, and that the mass was blocking a kidney.

Four days later, George was diagnosed with fast-growing B-cell lymphoma (cancer of the B cells) in his abdomen.

Further tests revealed that he had XLP immune deficiency, a rare condition that meant his body didn’t produce the cells to help it fight cancer. Without a bone marrow transplant, the tumour would return.

Infection, Cancer, Immunity and Laboratory Medicine The Infection, Cancer, Immunity and Laboratory Medicine division manages patients with cancer, infectious diseases and problems relating to immunology, rheumatology and dermatology. The main laboratory services (with the exception of genetics) at Great Ormond Street Hospital (GOSH) are part of this division.

“The combination of immune deficiency and cancer is a significant challenge for doctors to treat,” said Dr Paul Veys, Director of the Bone Marrow Transplant Unit at GOSH. “Teams at GOSH have discovered that the secret to success is to treat the immune deficiency early with a reduced-intensity blood and marrow transplant (BMT) procedure, rather than pursue aggressive cancer chemotherapy and/or a full-intensity BMT.

Key achievements

“Correcting the immune deficiency usually takes care of the cancer, and we used this approach to treat George.”

● Testing

George underwent a successful bone marrow transplant in 2013, and following three months in isolation, he was able to go home. “Over a year later, we are delighted that George is well and appears to be cured from both diseases,” said Dr Veys.

● In

2013, GOSH performed 120 bone marrow transplants, which account for one-third of the national total for children.

● The

Rheumatology team implemented a new electronic discharge summary template, enabling them to communicate faster with shared care hospitals, GPs and local paediatricians after patients are discharged.

● The

Newborn Screening Laboratory piloted the screening of five more rare conditions and helped to inform whether this screening should be rolled out nationally.

of a new stem cell-based treatment for recessive dystrophic epidermolysis bullosa – a rare and debilitating skin condition – began.

The clinical trial is led by King’s College London in collaboration with GOSH.

● We

delivered sessions to improve knowledge and skills in palliative care foundation training following a successful bid to Health Education England.

● The

Dermatology team improved their use of the laser procedure room, helping them undertake 200 more laser procedures and enabling children with vascular and pigmented lesions to receive prompter treatment.

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Surgery The Surgery division at Great Ormond Street Hospital (GOSH) covers a wide range of specialist surgical and related services for children. It also manages theatres, recovery and the Anaesthetic department.

Key achievements ●

The Spinal High Dependency Unit became fully operational in 2013, allowing improved quality of care for patients undergoing complex spinal surgery.

●

The spinal service began an outreach clinic at the Tunbridge Wells Hospital in Maidstone, Kent, providing specialist support to local centres and more effective triage of patients referred to GOSH.

●

The spinal service increased the use of magnetic growth rods, which reduced the need for repeated surgery.

●

The division continued to work towards launching a standardised process for pre-operative assessment in order to reduce risk and improve the quality of experience for patients and families.

●

The division improved theatre usage with a new computerised planning system that allows theatres to run more efficiently and treat more patients.

●

The new Same Day Admissions Unit, Puffin Ward, opened in March 2014, and is the first phase of a procedure floor that also combines theatres and a post-anaesthetic care unit. The opening of the Ward improved patient experience and reduced patients’ waiting times.

●

The Surgery team focused on reducing the number of changes to operating lists for patients’ planned procedure times to avoid disruption.

8 • Great Ormond Street Hospital for Children NHS Foundation Trust • Highlights 2013/14

Successful surgery to replace baby’s intestines Ava was born with gastroschisis, a condition where her abdominal wall hadn’t formed properly and her intestines were on the outside of her body. Her mum Kelly’s three-month scan had revealed the condition before Ava was born, and so it was arranged that Kelly would give birth around the corner from GOSH at University College London, so that Ava could be transferred immediately.

After Ava was born, her intestines became exposed to the air, so an operation needed to happen within hours. Consultant Neonatal and Paediatric Surgeon Joe Curry and his team started the delicate process of putting Ava’s intestines back inside her abdomen.

“They could only push part of it back at first,” said Kelly, “then they put the rest in a silo bag to protect it, and she was taken to the Neonatal Intensive Care Unit.”

Over a week, doctors successfully eased the intestines back in, a process aided by suspending them above Ava’s body so that gravity helped put them in place.

During her recovery, Ava caught necrotising enterocolitis, a condition which can cause the contents of the intestine to leak. But after a week of antibiotics and designated nil by mouth, she was fine: “Now she’s doing really well and hopefully she’ll be able to lead a normal life,” said Kelly. “I still look at her and think, ‘I don’t know how they did it’.”

“ I still look at her and think, ‘I don’t know how they did it’”

GreatStreet Ormond Street Hospital for Children NHS Foundation Trust Highlights2013/14 2013/14 • 9 Great Ormond Hospital for Children NHS Foundation Trust • • Highlights

“ The technology gives Grace independence and confidence”

10 • Great Ormond Street Hospital for Children NHS Foundation Trust • Highlights 2013/14

Giving patients a voice In 2013, the Communication, Learning and Technology Service was named as one of 13 Specialist Centres commissioned

by NHS England to provide high-tech communication aid equipment to children with communication challenges.

Tom Griffiths, Healthcare Scientist in the hospital’s Neurodisability department, works as part of a multidisciplinary team assessing children’s language ability and physical skills, with a view to providing communication support. “Not having a voice can really limit your access to all parts of life,” says Tom. “This sort of technology can enable children to communicate with friends, family and adults in their world.”

Grace has athetoid quadriplegic cerebral palsy, which means that damage to her brain has impaired her speech and movement. The Neurodisability team recommended a communication aid to support her alongside her speech and language therapy. The device allows Grace to use a hand-held joystick to select words on a screen.

“The technology has had a major impact on Grace’s life,” says Simone, Grace’s mum. “Without the support of the team and the technology it would have been very difficult. When you see her with her friends, you see how important that technology is. It gives her independence and confidence.”

Grace, her mum and the team hope that Grace will soon be able to benefit from eye-gaze technology, which allows control of a computer using only the movement and rest of the eyes.

Neurosciences The Neurosciences division at Great Ormond Street Hospital (GOSH) provides care to children with disabilities, tumours and diseases affecting the central nervous system. The department also includes the General Paediatric team, Clinical Site Practitioners and Bed Managers. In 2013, the division expanded further to incorporate Outpatients, the Central Booking Office and hospital main reception.

Key achievements ● The

trial of the NerveCentre patient monitoring software on Koala Ward was a huge success, allowing nurses and doctors to monitor patient progress electronically from anywhere in the hospital.

● The

new Psychological Medicine team was shortlisted in the Royal College of Psychiatry Awards 2013 in the category Psychiatric Team of the Year: Children and Adolescents.

● The

division began a comprehensive improvement programme in the Outpatients department, including identifying efficiencies, securing additional space for outpatients and building a case for investment.

● The

Neuromuscular department completed the Family Centred Programme with the King’s Fund, focusing on improving the patient experience when attending multiple same-day appointments.

● Koala

Ward took part in an important improvement project, which saw the introduction of an electronic whiteboard and daily planners for each patient in order to reduce delays to patient care on the Ward.

● The

Neurosurgery department reduced adverse events following surgery from 15 per cent to five per cent, which means there were fewer infections, errors or delays relating to surgery.

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Medicine, Diagnostic and Therapeutic Services The Medicine, Diagnostic and Therapeutic Services (MDTS) division at Great Ormond Street Hospital (GOSH) provides services to children with medical conditions. They manage many of the hospital’s clinical support services, such as Radiology, Physiotherapy and the Pharmacy.

Key achievements ●

Kingfisher Ward expanded to become a 24-hour service, enabling the teams to see more short-stay investigation patients.

●

The Renal team set up a one-stop vascular access clinic in conjunction with the Guy’s and St Thomas’ Hospital Vascular team and Ultrasound department, significantly shortening the pathway for patients with renal problems.

●

The national Chronic Intestinal Pseudo Obstruction service entered its third year, and continued to run at full capacity diagnosing children under five years old. The team was honoured with a 2013 Health Service Journal Efficiency Award for Efficiency in Diagnostics.

●

The Gastroenterology team started using handheld electronic notes to improve communication with patients, parents, community nurses, GPs and local paediatric teams.

●

The Metabolic team successfully administered a cell therapy product – Promethera® HepaStem – in a patient with ornithine transcarbamylase deficiency, a common urea cycle disorder, as part of a clinical trial. The procedure involved several specialties, including metabolics, intensive care, interventional radiology and pharmacology.

12 • Great Ormond Street Hospital for Children NHS Foundation Trust • Highlights 2013/14

100 per cent cure rates for patients with focal hyperinsulinism Since 2010, the GOSH Congenital Hyperinsulinism team has treated and cured 10 patients diagnosed with focal hyperinsulinism. This condition causes individuals to have abnormally high levels of insulin, the hormone produced by the pancreas. This results in low blood sugar levels, which can cause hypoglycaemia.

Focal hyperinsulinism can cause floppiness, shakiness, poor feeding and sleepiness. If left untreated, repeated episodes of low blood sugar can increase the risk of seizures, loss of consciousness and potential brain injury.

Charlie was admitted to GOSH as a result of dangerously low blood sugar.

After doctors discovered he had hyperinsulinism, a scan revealed that his condition was focal and could potentially be cured by surgery.

Charlie had 35 per cent of his pancreas removed, but the surgery didn’t work.

However, a relationship between University College London Hospital (UCLH) and the GOSH Endocrine team meant that Charlie became the first baby to undergo an 18F-DOPA PET scan at UCLH. The scan more accurately pinpointed the affected area.

After surgeons removed a further 15 per cent of Charlie’s pancreas, his dependence on intravenous sugars dropped. Thanks to the work of MDTS, Charlie is now able to maintain normal blood glucose levels without further medical intervention.

“ Charlie is one of 10 patients to have been treated and cured” Great Ormond Street Hospital for Children NHS Foundation Trust • Highlights 2013/14 • 13

“ The new measures will help to ensure Angela receives the highest possible quality of service”

Angela with mum Priscilla

14 • Great Ormond Street Hospital for Children NHS Foundation Trust • Highlights 2013/14

Monitoring shortterm outcomes after paediatric heart surgery A research team led by Paediatric Cardiothoracic Surgeon Mr Victor Tsang and Paediatric Cardiac Intensivist Dr Kate Brown have developed and tested a method that can help improve shortterm outcomes monitoring following paediatric heart surgery. The new method is enabling cardiac surgical teams across the UK to ensure that patients like Angela who require heart surgery are given the best possible quality assurance.

Previously, there were several limitations when benchmarking outcomes. Thanks to the work of GOSH and analysts from University College London based at the Clinical Operational Research Unit, new methodology and software has been developed to allow paediatric cardiac centres nationwide to routinely monitor their short-term surgical outcomes in near real-time and make adjustments for risk.

Using a variable life-adjusted display (VLAD) chart, children’s heart centres are able to see how the short-term survival rates of patients fare over time. It allows those teams to assess the effectiveness of surgical procedures and look into any worrisome trends, thereby helping with in-house outcome monitoring.

It is important to reiterate that the above risk adjustment model is not designed to compare outcomes between different institutions.

Critical Care and Cardio-respiratory The Cardio-respiratory Unit at Great Ormond Street Hospital (GOSH) is the largest centre for children with complex heart and lung conditions in the UK, on a par with the largest centres in North America. The Critical Care Unit hosts the largest paediatric intensive care service in Europe, comprising a Neonatal Intensive Care Unit (NICU), Paediatric Intensive Care Unit (PICU) and Cardiac Intensive Care Unit (CICU). The division also hosts the Children’s Acute Transport Service (CATS), the largest service of its kind in the UK.

Key achievements ● The

division continued to expand by opening more beds and treating more patients, and focused on the recruitment and retention of nurses.

● Cardiology

established a new Fetal Unit, providing a dedicated space where pregnant women can be scanned and counselled privately for a better patient experience.

● The

Respiratory Sleep Unit expanded its services to provide sleep studies seven days a week.

● The

Cardiac Advanced Nurse Practitioner team concentrated on discharge from hospital and home monitoring for babies born with a single ventricle in their heart. They also started running anticoagulation and early postoperative follow-up clinics.

● NICU

moved into a dedicated space and also received excellent feedback from the Thames Regional Perinatal Group review.

● CATS

received accreditation from the Commission on Accreditation of Medical Transport Systems, which measures quality and safety standards.

● The

division introduced an electronic visual whiteboard, which contains important information about each patient in order to ensure effective communication with the wards and wider hospital.

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International and Private Patients The International and Private Patients (IPP) division provides services for international and private patients with complex and rare conditions.

Patients come to Great Ormond Street Hospital (GOSH) from over 80 countries, although most come from the Middle East. The majority of patients are funded by their governments as the treatments offered at GOSH aren’t available in their home country. The funds generated from the division support the work of the hospital for its NHS patients.

Key achievements ● The

division developed and maintained strong relationships with key embassies in London and health ministries in referring countries.

● The

reorganisation of the Caterpillar Outpatient department reduced delays and ensured a more efficient service was provided for outpatients. The division established a role to manage patient flow and the allocation of rooms and staff. Staff completed phlebotomy training, reducing delays for patients waiting for blood tests and results.

● The

division installed two electronic patient whiteboards in the inpatient wards, providing real-time information for clinical teams in order to reduce interruptions, delays and miscommunication.

● Arabic

Interpreting Assistants became ward and department based to improve communication and support between staff and Arabic families.

● ‘Safety

huddles’ – daily five-minute meetings to discuss patient progress and treatment – were introduced to improve communication between doctors and nurses.

● The

division continued to recruit and retain nurses and healthcare assistants. The team implemented an education programme, providing hands-on training to ensure patients and families receive the best possible care. The team delivered specific training to increase awareness of cultural aspects for staff across the hospital.

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Finding comfort in a new home Fifteen-year-old Mohammed came to GOSH from Kuwait after an operation to remove a tumour revealed further complications – he had recurring clots that remained after the tumour was removed. His doctor couldn’t be certain whether these clots were a congenital malformation or remnants of blood and fat that could disappear following chemotherapy and radiotherapy.

With the help of a friend at the Kuwait Ministry of Health, Mohammed’s parents booked an appointment at GOSH so he could have the medical attention he urgently needed. Consultant Paediatric Oncologist Anthony Michalski diagnosed the clots as remnants of blood and fat, which could be removed with surgery.

Mohammed said: “Before arriving at GOSH, I was extremely scared of needles, but the nurses took my hand and encouraged me with their tenderness and professionalism. I loved the entire staff at the hospital. They were keen to make me feel as comfortable as possible.”

Once doctors saw improvement and stability in Mohammed’s health, he was transferred to NBK Children’s Hospital in Kuwait for further treatment and routine check-ups.

Dr Michalski said: “It was a pleasure and a privilege being involved in Mohammed’s care... I saw him when I visited Kuwait and was proud to see what a fine young man he is growing up to be.”

“ I loved the entire staff at the hospital”

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Nina with mum Aga

“ One day, Nina will be able to lead a good quality of life” 18 • Great Ormond Street Hospital for Children NHS Foundation Trust • Highlights 2013/14

Trial of world-first gene therapy for patient born without immune system A team led by Bobby Gaspar, Professor of Paediatrics and Immunology at the ICH and Honorary Consultant in Paediatric Immunology at GOSH, have devised a revolutionary new treatment called gene therapy for children born with severe combined immunodeficiency (SCID).

The inherited condition is caused by a mutation in a gene. A child with SCID is born without a functioning immune system, making them unable to fight off infection, and they have to live in a sterilised environment.

At five weeks old, Nina was diagnosed with SCID. She had multiple infections and was placed in isolation to stop her coming into contact with any more diseases. Nina needed a bone marrow transplant to treat her condition, but doctors were unable to find a match.

Professor Gaspar discussed gene therapy with Nina’s parents. The pioneering treatment would involve re-engineering Nina’s bone marrow to add a vital missing gene, which would reboot her defence systems and allow her to develop a fully functioning immune system.

Nina received the radical therapy in 2013. Six months after her treatment, she has shown very encouraging signs of recovering her immune system, and doctors have been able to stop most of her protective medication.

“The doctors and nurses at GOSH are amazing,” says Nina’s mum, Aga. “It has given us the hope that one day Nina will be able to lead a good quality of life.”

Research Research is integral to Great Ormond Street Hospital (GOSH), benefitting children in the UK and worldwide by finding diagnoses, treatments and cures for some of the most complex and rare conditions. The Research division comprises the National Institute for Health Research (NIHR) Biomedical Research Centre at Great Ormond Street Hospital and University College London (BRC), the Somers Clinical Research Facility and the Joint Research and Development Office.

Key achievements ● More

than 600 research projects were carried out at GOSH and the UCL Institute of Child Health (ICH), our academic research partner.

● Over

2,800 patients were recruited to participate in NIHR Clinical Research Network Portfolio studies, a grouping of high-quality clinical research studies. This is an increase of 39 per cent on the previous year.

● According

to an analysis conducted by Thomson Reuters (Evidence), GOSH and the ICH are within the top five paediatric research centres in the world when measured by the impact of their research publications.

● The

BRC funded the Young Person’s Advisory Group, a joint initiative with the NIHR Medicines for Children Research Network, to develop a short film about children taking part in research.

● Children

and young people at GOSH helped lead the national Young People’s Research meeting to demonstrate the benefits of their work with funders, investigators and the pharmaceutical industry.

● GOSH

received over £30 million of funding for research projects, which included direct income to GOSH and joint grants awarded to GOSH and the ICH.

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Our people Great Ormond Street Hospital (GOSH) depends on the work and commitment of its staff in order to succeed. 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 offer.

Our 2013 annual staff awards winners No waste champion Sue Brown, IT Mentor of the year Angela Privitera, Student Link Nurse, Penguin Ward Perceptor of the year Deborah Cairns, Senior Staff Nurse, Bumblebee Ward Volunteer of the year Stephanie Nash Christine Tushingham memorial award Sara Kwagala

Key achievements ● We

continued to strongly promote our wide range of staff health benefits to help the people who work at the hospital. These include our Occupational Health team, award-winning on-site Physiotherapy Service, our staff counselling and advice service and the sports and social committee.

● The

success of the annual staff awards prompted us to launch new monthly GEMS awards for GOSH Exceptional Members of Staff in January 2014, to celebrate outstanding individuals and teams.

● We

identified that Bands 5 and 6 nurses are among our hardest to recruit posts. In response, we launched a recruitment drive, which included bespoke videos, interviews and publications to tackle this area. We were able to successfully recruit high-quality staff, and have seen significant improvements in vacancies in some of our key sub-specialty departments.

● Learning

and education remained key priorities. More than 10,440 course places were filled across all our learning and development activities. In the 2013 staff survey, 84 per cent of respondents stated they had received job-relevant learning (three per cent above the national average for acute trusts).

● Almost

400 members of staff went through some level of leadership training during the year, compared to 200 members last year.

20 • Great Ormond Street Hospital for Children NHS Foundation Trust • Highlights 2013/14

Gwen Kirby student nurse award given by the Nurses League Mari Sannerhaugen, Staff Nurse, Butterfly Ward Leader of the year Sarah Owen and Lucy Thomas, Ward Sisters, Eagle Ward Transformation award Lindsay Kay-Leaver, Clinical Nurse Specialist, Cardiac Unit Gwen Kirby ward sister/charge nurse award given by the Nurses League Rosaleen Johnston, Ward Sister, Robin Ward Colleague of the year Syed Ahmed, Domestic, Koala Ward Team of the year Metabolic Unit, Chemical Pathology Patricia Lewisohn award for excellence in customer care Laura Callow and Hardeep Grewal, HR reception Child and family award Dr Khalid Hussain and the Hyperinsulinism team For our 2014 winners, please go to our website www.gosh.nhs.uk

Who our employees are Doctors and dentists 531 Registered nurses 1,213 Scientists and therapists 604

Nursing and scientific support 432

Non-clinical support 113 Administrative and managerial 743

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Safety Zero harm

Clinical effectiveness Demonstrate clinical outcomes

Experience Deliver an excellent experience

Quality priorities The above diagram shows our quality priorities.

We’ve highlighted below how we measure clinical effectiveness at GOSH. Following reports will focus on experience and safety in turn.

Clinical effectiveness Clinical outcomes are measurable changes in health or quality of life that result from our care. By constantly reviewing our clinical outcomes, we can establish standards to measure ourselves against. This enables us to continuously improve all aspects of our practice, thereby providing the very best service to our patients and their families.

Through our Clinical Outcomes Programme, we support clinical services to identify key outcome measures, harness existing data sources and publish outcomes on the hospital website. We liaise with the Trust Technology team to make data collection easier and less time-consuming by capturing it electronically.

We also work with international partners to ensure that we are competing on a global scale as a worldclass institute compared with our peers. It allows us to establish common measures so that we can learn from each other to improve.

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International benchmarking for improvement Benchmarking allows us to systematically compare our treatment outcomes with other paediatric healthcare providers by measuring the same things in the same way. This ensures the comparison is accurate when we rate our effectiveness against our peers.

Measuring the quality of what we do

By identifying who is the best, we know what to aim for and strive to be better.

Specialist hospitals like GOSH often have to look abroad for a standard to measure against due to the number of patients with rare conditions that we treat.

The people who work at Great Ormond Street Hospital (GOSH) strive to improve the quality of the healthcare they provide for the hospital’s patients.

We can measure all aspects of this care, including:

The Outcomes team have established an international collaboration between 16 paediatric centres of excellence to agree common outcome measures. Using a repeated process of proposal and evaluation by clinicians, we are nearing agreement on outcome measures for:

We routinely monitor these aspects against established measures to determine how well we are doing and identify areas for improvement. We are committed to transparency about the quality of our services and to continuous improvement in all we do.

• haematology/oncology • haemophilia • interventional radiology • neurosurgery • urology Emerging themes suggest that most of the specialties involved will reach international agreement on at least one outcome measure, and some specialties may achieve agreement on as many as five measures. These measures will help us to accurately gauge our effectiveness with our specialist paediatric peers.

The enthusiasm of participants has been encouraging and the power of collaboration is evident.

• how safe our hospital is • the effectiveness of our clinical care • the experience of our patients

Key achievements ● Every

surgical and medical specialty in the hospital identified at least five outcome measures to monitor the effectiveness of their service.

● Twenty-five

specialties published outcomes data to the Trust website, with information to help communicate what the numbers mean and why they are important.

● Our

international work captured the interest of the International Consortium for Health Outcomes Measurement (ICHOM), which is systematically developing outcome measures by condition. In partnership with Texas Children’s Hospital, GOSH recommended Cleft Lip and Palate as the first paediatric condition for ICHOM to work on.

● The

Outcomes team began piloting the use of the variable life-adjusted display chart from cardiac surgery (see page 15) with the team who treat venous malformations in the brain. This will help display individual patients’ outcomes, adjusted for risk.

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Our buildings In order for Great Ormond Street Hospital (GOSH) to maintain its position as a leading centre for paediatric care and research, we need to update our oldest buildings with new facilities. These facilities will also create additional space, allowing us to treat more children as we try to meet the growing demand for our services. Our ambitious four-phase redevelopment programme aims to rebuild two-thirds of the hospital site over a 20-year period.

Phase 2A

Phase 2B

The Morgan Stanley Clinical Building The first part of the Mittal Children’s Medical Centre

The Premier Inn Clinical Building The second part of the Mittal Children’s Medical Centre

The Morgan Stanley Clinical Building 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 – moved into the new building and experienced a huge difference, with larger ward space and facilities and cutting-edge equipment.

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

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

The two clinical buildings will be connected, allowing 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.

24 • Great Ormond Street Hospital for Children NHS Foundation Trust • Highlights 2013/14

Progress in 2013/14 The preparations needed prior to the construction of the Premier Inn Clinical Building – called enabling works – continued to progress well in 2013/14.

These works comprised more than 28 projects and moves. They included office refurbishments in radiology and dietetics, and the relocation of clinical facilities to newly built and refurbished areas. An exciting opportunity also arose to refurbish the much-needed main hospital reception. This greatly improved reception is helping families better navigate their way around the hospital and aims to improve their overall experience.

Some of the location moves have provided much-improved facilities. For example, the Procedures Pathway Floor (PPF) brings the Same Day Admissions Unit (also known as Puffin Ward) closer to the places that patients are most likely to be sent for treatment. The opening of Puffin Ward in March 2014, followed by Woodpecker Ward in May 2014, is the first stage of implementation of the PPF. The old Cardiac Wing is now empty and the site is ready for the main body of works to begin. Significant progress with the design of the Premier Inn Clinical Building has been made and we have appointed the contractors Skanska who began on site in June 2014.

Phase 2A

Phase 2B

Phase 3A

The Morgan Stanley Clinical Building The first part of the Mittal Children’s Medical Centre

The Premier Inn Clinical Building The second part of the Mittal Children’s Medical Centre

The Centre for Research into Rare Disease in Children

Phase 3A The Centre For Research Into Rare Disease In Children Phase 3A of the redevelopment programme is the construction of The Centre for Research into Rare Disease in Children. This will be a world-class, multidisciplinary centre of excellence, bringing together clinicians from GOSH and researchers from the UCL Institute of Child Health and Institute of Cardiovascular Science.

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

Great Ormond Street Hospital for Children NHS Foundation Trust • Highlights 2013/14 • 25

Patient experience Great Ormond Street Hospital (GOSH) is committed to improving the patient experience by responding to the views of patients and their families. The results of our independent inpatient and outpatient surveys have always shown excellent feedback scores from the majority of patients and parents who visit the hospital. However, we recognise that there are some areas in which we need to improve.

Key achievements ● All

clinical units and corporate departments were asked to implement action plans to address areas of concern, including satisfaction with food, knowing how to feedback and complain, planning care for patients with special needs and discharge processes. Results from the Inpatient Experience Survey 2014 showed that 94 per cent of parents and patients were satisfied with their last visit to the hospital, and improvements were made in a range of other measures.

● The

Trust began implementing the government’s Friends and Family Test to gather the views of patients and families on their experiences of our services.

● The

Trust held a listening event for 100 patients, families and staff to identify what it does well and what needs to be improved. The group agreed that GOSH needs to clearly articulate the organisation’s values and behaviours. An extensive piece of work has taken place to consult widely on what these should be and a framework of ‘always values’ has been approved by the Trust Board, which will be implemented across the hospital.

● The

Young People’s Forum, which gives young people a voice in how the hospital is run, has been actively involved in a range of hospital initiatives. Young members are now actively consulted on a wide range of issues.

26 • Great Ormond Street Hospital for Children NHS Foundation Trust • Highlights 2013/14

One-year-old Nidhi on Miffy Ward

Our finances Where our money comes from Education and training £9,966

Other income £26,301 NHS patient care income £284,019

Research and development £21,205

Non-NHS patient care income £48,661

£000s

How we spend it Depreciation and impairment £28,132

Other £27,188

Premises £23,613

Other clinical supplies and services £50,733

Medicine £36,774

Research and development £13,792

£000s

Staff £193,820

Great Ormond Street Hospital for Children NHS Foundation Trust • Highlights 2013/14 • 27

Great Ormond Street Hospital Board of Directors 2013/14 Non-Executive Directors

Executive Directors

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

Mr Julian Nettel Interim Chief Executive from 1 January 2014

Mr Charles Tilley FCA FCMA CGMA Non-Executive Director, Deputy Chairman and Chair of the Audit Committee Ms Mary MacLeod OBE MA CQSW DUniv Non-Executive Director, Senior Independent Director and Chair of the Clinical Governance Comittee Ms Yvonne Brown LLB Solicitor Non-Executive Director Mr David Lomas Non-Executive Director and Chair of the Finance and Investment Committee Mr John Ripley Non-Executive Director Professor Rosalind Smyth FMEDSCI Non-Executive Director

Mr Jan Filochowski Chief Executive until 31 December 2013 Dr Barbara Buckley MB BS FRCP FRCPCH Co-Medical Director until 31 December 2013 Mr Robert Burns Interim Chief Operating Officer until 30 June 2013 Dr Catherine Cale MB ChB PhD MRCP FRCPath MRCPCH Co-Medical Director from 1 January 2014 Professor Martin Elliott MB BS MD FRCS Co-Medical Director Mr Ali Mohammed Director of Human Resources and Organisational Development Mrs Elizabeth Morgan MSc RN Adult RN Child RNT RCNT Dip N IHSM Diploma Chief Nurse and Director of Education Mrs Claire Newton MA (Cantab) ACA MCT Chief Finance Officer Ms Rachel Williams Chief Operating Officer from 1 July 2013

28 • Great Ormond Street Hospital for Children NHS Foundation Trust • Highlights 2013/14

Two-year-old Yunis on Lion Ward

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

Representatives on the council include staff, patients, parents and carers, and appointed representatives.

Edward Green Patients outside London

These were the Councillors in 2013/14, with the constituencies they represented listed.

Lisa Chin-A-Young Parents and carers from London

George Howell Patients outside London Sophie Talib Patients outside London Matthew Norris Parents and carers from London Lynne Gothard Parents and carers from London

John Charnock Parents and carers outside London Claudia Fisher Parents and carers outside London Camilla Pease Parents and carers outside London Trevor Fulcher North London and surrounding area Rebecca Miller North London and surrounding area Ian Lush North London and surrounding area Lewis Spitz North London and surrounding area Louise Clark South London and surrounding area Stuart Player The rest of England and Wales

Julia Olszewska (until 31 January 2014) The rest of England and Wales Daniel Dacre Staff Mary De Sousa (until 1 September 2013) Staff Jilly Hale Staff James Linthicum (from 14 November 2013) Staff Clare McLaren Staff Dhimple Patel Staff Jenny Headlam-Wells London Borough of Camden Christine Kinnon UCL Institute of Child Health Olivia Frame (from 1 November 2013) Expert Patient Programme Community Interest CIC Muhammad Miah The Children’s Hospital School at Great Ormond Street Hospital and University College Hospital Alastair Whitington (from 1 June 2013) NHS England

Great Ormond Street Hospital for Children NHS Foundation Trust • Highlights 2013/14 • 29

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

Cover: five-year-old Lita on Peter Pan Ward