Pioneer Magazine Summer 2020

SUMMER 2020 Great Ormond Street Hospital Children’s Charity

2020 INTERNATIONAL YEAR OF THE NURSE SPECIAL YEAR OF THE NURSE SPECIAL

A LEARNING ACADEMY FOR ALL

Celebrating the incredible nursing teams at GOSH

How GOSH’s new Learning Academy will benefit staff, patients and families

WELCOME Welcome to the Summer 2020 issue of Pioneer and another edition packed full of hospital news and inspiring stories of children and young people and the staff at Great Ormond Street Hospital (GOSH).

CONTENTS 04 IN REVIEW Stories from around the hospital and charity.

06 I HAVE… HYPERTROPHIC CARDIOMYOPATHY Pioneer talks to Kat about how she’s living life with the rare heart condition.

08 RESEARCH RAISING HOPE Highlights of child health research projects that could lead to life-changing treatments.

12 EDEN’S PROGRESS AT GOSH Eden was diagnosed with rare cancer neuroblastoma at 14 months old. Pioneer speaks to mum Emma about the family’s GOSH journey.

14 THE ROAD TO BETTER TREATMENTS Pioneer talks to Professor Darren Hargrave about clinical trials into childhood cancers.

16 COVER STORY SHINING A SPOTLIGHT ON GOSH NURSES Our 10-page special celebrates the International Year of the Nurse.

18 GOSH LEARNING ACADEMY Pioneer discovers how the hospital’s new Learning Academy will positively impact the nursing teams at GOSH.

20 NURTURING NEW NURSES Pioneer meets the nurses benefitting from GOSH’s training opportunities.

22 THE PIONEER INTERVIEW GOSH Chief Nurse Alison Robertson reveals how GOSH Charity supports her nursing teams.

24 MEET OUR CLINICAL NURSE SPECIALISTS Discover how GOSH’s Clinical Nurse Specialists are making a difference to patients’ lives.

26 WHY I SUPPORT Retired GOSH nurse Cathie Fraser tells Pioneer about how important the hospital has been to her family across three generations, and her wish to help its young patients for generations to come.

28 SPIRITUAL CARE FOR ALL Pioneer discovers how the spirtual care services at the hospital help patients, families and staff.

32 THE EVOLUTION OF VACCINATIONS An insight into how international collaboration is key to developing childhood vaccines.

34 PARENT’S PERSPECTIVE Frank sadly passed away from a rare form of cancer. Mum Maris shares their family’s story.

Back cover: nursing at GOSH, past and present.

All photographs included in this edition were taken before the Coronavirus crisis and lockdown.

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These stories will show you, more than ever, how your continued support of Great Ormond Street Hospital Children’s Charity (GOSH Charity) makes a difference. It meant that, when the COVID-19 crisis broke, we were able to help meet some of the hospital’s immediate needs in responding. Read more about how your support has helped in our In Review section on page 4.

We urgently need to continue supporting the hospital in whatever way we can as it copes with the current crisis and the difficult times that will follow, as the hospital reacts quickly to changes as they happen. That may mean funding specialist medical equipment, research projects, direct support for patients and their families, or staff welfare services. The hospital has always treated and cared for seriously ill children – this hasn’t stopped during the crisis and it will continue to do so long after.

GOSH staff, along with all other NHS workers, are our heroes and, in this edition, we’re shining a spotlight on their incredible work. 2020 is also the International Year of the Nurse and we’re bringing you a 10-page special, starting on page 16, on the fantastic nursing teams at GOSH and the patients and families they support.

This issue also brings stories, from page 28, of the wonderful care the hospital’s charity funded spiritual services provide for patients, families and staff, services that are even more integral during these difficult times.

And you’ll also read about how we’re funding crucial research into child health via our national call, from page 8. Research into complex conditions begins in the laboratory and investing in this vital stage ensures the most promising ideas have the chance to become life-changing treatments.

We want to say a huge, heartfelt thank you for all the support you’re giving GOSH and GOSH Charity. Your support is more important than ever to ensure there is no longer term impact on the care the hospital can deliver to seriously ill children, once the crisis is over.

I leave you now with this collection of personal and inspirational stories, which I hope will encourage you to continue supporting the incredible work that takes place both at GOSH and GOSH Charity.

Louise Parkes Chief Executive Great Ormond Street Hospital Children’s Charity

On the front cover: A nurse of the future?

Patient Lily plays at being a nurse at GOSH

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IN REVIEW 1 THANK YOU FOR

SUPPORTING OUR VALENTINE’S APPEAL

As Great Ormond Street Hospital (GOSH) opened its doors on Valentine’s Day in 1852, we launched the GOSH Heart Appeal on 14 February to mark the hospital’s anniversary.

The GOSH Heart Appeal was launched to raise £200,000 towards the £2.7 million upgrade of the Cardiac Catheter Suite at the hospital. Cardiac catheterisation uses advanced imaging techniques to guide the diagnosis and treatment of heart conditions via a tiny twomillimetre incision in the thigh – without the need for open-heart surgery. The upgrade to the Cardiac Catheter Suite means more precise images of tiny hearts, less open-heart surgery and more life-saving procedures on even the smallest hearts including premature babies.

2 GOSH RAFFLE SUPERSTARS!

Thanks to our generous supporters, this year’s New Year Raffle raised more than £245,000!

Raffles are a great way to raise funds to support the seriously ill children at GOSH. Within a year, these raffles brought in more than £780,000, which will be used to buy new equipment, fund the redevelopment of the hospital, pay for groundbreaking research projects and support patients and families. Families like Daniel’s (pictured right), whose story featured in the raffle.

At five years old, Daniel was referred to GOSH where,

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SUMMER PIONEER APPEAL NEWS STORIES

The appeal told the story of GOSH patient April (pictured below), who had a heart attack at just five months old. Two life-saving procedures were carried out in the Cardiac Catheter Suite at GOSH to help the flow of blood to her heart until she was strong enough for open-heart surgery. April will need to be monitored regularly and her parents hope any further treatment could be in the updated Cardiac

following MRI scans, blood tests, an echocardiogram and liver and bone tests, he was diagnosed with systemic-onset juvenile idiopathic arthritis. It’s an incredibly rare condition where a child’s immune system goes into overdrive and attacks their own tissues, making their joints swell and stiffen, which can stop them walking.

Treatment at GOSH reduced the inflammation in Daniel’s joints and protected his liver from further deterioration. “As soon as we walked through the doors at GOSH, we felt like we’d been enveloped in the biggest hug,” Daniel’s mum Rosemary says.

Catheter facilities. The GOSH Heart Appeal raised an incredible £340,000 towards the vital upgrade. A big thank you to all our supporters who donated to the appeal. Your generosity will make a big difference to the smallest hearts and means GOSH can treat even more young patients like April in the best possible environment, so more children with heart conditions can live full and happy lives.

SUPPORT 3 WONDERFUL FOR OUR CHRISTMAS APPEAL

The Christmas season saw the launch of our annual Christmas Stocking appeal, which has been running for more than 20 years. The Christmas Stocking appeal features memorable sketches from the well-known illustrator Tony Ross and is a fantastic opportunity for supporters to send a message of gratitude, thanks and well wishes to patients, families and staff who are in hospital over the Christmas period.

The stockings are hung as decorations across the hospital wards and are also projected on

screens throughout the hospital and at patients’ bedsides.

Last year’s appeal featured GOSH patient Craig who spent Christmas 2017 at GOSH following a kidney transplant as part of his treatment following a Wilm’s tumour. Craig’s mum Lisa enjoyed reading the stocking messages during their time at the hospital and Father Christmas even visited Craig’s room on Christmas morning!

thanks to the generosity of our supporters. The money raised will make a huge difference to the lives of seriously ill children and will help to fund key research, pioneering equipment, vital refurbishments to the hospital, and patient and family support including parent accommodation.

Thank you again for your continued support, we are so grateful for our supporters.

The appeal received a fantastic response with stockings arriving by the sack full, each with a heartfelt message of support.

The 2019 Christmas appeal raised an incredible £1 million

4 SHOP WITH GOSH Visit gosh.org/shop to buy your own GOSH Reindeer or Nurse Wendy Bear as well as many more cards and gifts. Profits from all sales support the hospital, so these really are gifts that give twice.

Play our next raffle in September at gosh.org/raffle.

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Kat stands before the Peter Pan statue at the entrance to GOSH

I HAVE... HYPERTROPHIC CARDIOMYOPATHY Pioneer meets 12-year-old Kat, one of 1,000 patients involved in a groundbreaking research project at GOSH to predict and prevent sudden cardiac death risk in children. Now, Kat has been fitted with an implantable cardioverter defibrillator (ICD). She tells us how the device has helped her live life to the full.

I have hypertrophic cardiomyopathy (HCM), a disease that involves the enlargement of the heart muscle. This makes it harder for your heart to pump blood to the rest of your body.

My mother delivered me as an emergency, at a routine visit to University College Hospital, 26 weeks through her pregnancy. I was then transferred to Queen Charlotte’s Hospital, then to Great Ormond Street Hospital (GOSH), where I was screened and tested to confirm I have HCM. I want to raise awareness of HCM wherever possible, because my sister, mother and grandmother died of HCM when I was young. None of them had the ICD devices I have now, and I think hospitals should screen any child who faints or collapses, to check whether they carry HCM. And, if they do, then to have an ICD inserted as early as possible.

My first memories of attending GOSH are from when I was three years old. From the moment I walked through the glass doors, I received the biggest smiles from the staff and volunteers. They are always ready to assist if you don’t know where you’re going.

I now come to GOSH three times a year although sometimes it could be five, depending on if my health requires me to come. Being part of a research project, I felt proud I contributed in helping the doctors find better treatments for people with cardiomyopathy around the world. Hopefully the research will also help

other children with questions or doubts about the condition.

Initially, I felt no reason to talk about my heart condition because it wouldn’t change anything. But my family insisted that, in time, it would help me deal with losing my mummy and sister, and deal with the condition itself. I feel it’s important for children like me to access counselling and mental health support, because I had support from a psychologist at GOSH as well as counselling at school from a young age. Along with access to the Play team at GOSH, these services helped me deal with what happened.

HCM does impact my life as a 12-year-old. I can’t perform physical activities, especially contact sports, because of the risk of hurting my ICD device, but I’m still involved in gentle PE and assisting my PE teacher at school. My school is very understanding about my condition.

I don’t think my friends understand my condition because they’re too young, but they treat me normally.

This is what I wanted because, in the past, my friends’ parents didn’t understand my condition and were worried about what would happen.

But I’ve since moved schools and I’m so happy with my friends now.

“I felt proud I contributed in helping the doctors find better treatments for people with cardiomyopathy around the world.”

I’m not supposed to run or carry heavy bags but, as I’m young, I sometimes forget myself! Climbing upstairs, I have to stop and rest. I enjoy walking, which has no risk to my heart, but going uphill is hard for hearts to take so I take my time and rest when needed.

To be honest, I just like to have fun and enjoy my life! I do yoga every Friday after school, gentle swimming, walking and bike riding. I play the piano and write my own songs – there’s even one about my heart condition. One of my favourite lines I’ve written is: “How I breathe, that’s me, I am here, strong, OK, that’s me.” I started writing songs because, as long as I can remember, my family has loved songs, singing and dancing, and it’s definitely rubbed off on me!

I’ve also passed grade one music, I love drama lessons and I enjoy learning languages. For me, drama is entertainment and I love performing. I’m fluent in Spanish, I’m learning French, Latin and Mandarin and I also pick up my family’s language, Yoruba, when they speak to each other at home. I love baking flapjacks, cakes, pies and I also love cooking my favourite dishes, which are fish pie, paella and curry.

I would like to say a massive thank you for everything GOSH has done for me. I can always ask Dr Kaski [consultant paediatric cardiologist at GOSH] direct and straight questions about my heart condition and where my health is up to, and get my ICD updated.

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The research raising hope

WHAT: Exploring whether a new compound derived from the spice cinnamon could help children with rare metabolic diseases.

National call funding – the child health research projects getting the green light As GOSH Charity and its partner charity Sparks awards £2.3 million to UK child health researchers following its third successive joint national call, Pioneer explores how these funding grants could lead to lifechanging treatments.

Research into complex conditions begins in the laboratory. Investing in this crucial stage ensures the most promising ideas get off the ground and, together, Great Ormond Street Hospital Children’s Charity (GOSH Charity) and Sparks are the UK’s largest dedicated charitable funder of child health.

Funding into research can make a vital difference.

Back in 2014, for example, GOSH Charity and its national call awarded funding to leading Sanfilippo syndrome [a rare metabolic disorder that causes a form of ‘childhood dementia’.] researcher Professor Brian Bigger at the University of Manchester. “GOSH Charity’s funding helped us, at an early stage in the project, to prove the idea had legs,” Professor Bigger says. “It was pivotal in getting us to where we are

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today – seeing children with Sanfilippo syndrome get access to what could be a life-saving treatment.”

This is now the third year GOSH Charity and Sparks have run a joint national call for funding applications from the UK’s researchers. We take a look at how they all aim to give families and children hope.

01 WHAT: Looking into genetic differences between childhood and adult brain tumours that could hold the key to new treatments.

WHERE: University of Cambridge.

WHY: Children are not just small adults. Yet children with incurable cancerous brain tumours called paediatric high-grade gliomas (pHGGs) are currently often treated with the same drugs used to treat adult brain tumours, even though children don’t respond in the same way due to genetic differences in child and adult tumours. By understanding these genetic differences, it could offer a personalised, targeted approach and a better chance of survival with reduced side effects.

Lab research

WHERE: UCL Great Ormond Street Institute of Child Health (UCL GOS ICH).

WHY: Metabolic conditions arise when genetic mistakes mean children’s bodies can’t break down or make chemicals the body needs to function properly. For example, when we eat protein, one of the chemicals it breaks down to is ammonia. The body converts excess ammonia into a chemical called urea, excreted in our urine. Two conditions affecting children are Non-Ketotic Hyperglycinemia (NKH) and Urea Cycle Disorders (UCDs). In NKH, a molecule called glycine accumulates in the body and, in UCDs, ammonia. At high levels these molecules are toxic and cause severe brain injury and even death.

“We deeply appreciate [fundraisers’] support and continued commitment to research into children’s health. Support means we’re able to continue to push the boundaries back on how much impact an illness can make on the future lives of children.”

Manav Pathania, Junior Group Leader, University of Cambridge

If successful, the use of this new compound – cinnamate – in children could dramatically improve quality of life. The team is also looking to gene therapy for a cure for some of these conditions.

03 WHAT: Researching into whether tamoxifen, a breast cancer drug, could help children with the muscle condition known as X-linked myotubular myopathy.

WHERE: UCL GOS ICH. WHY: X-linked myotubular myopathy (XLMTM) is a condition affecting the muscles and nerves around them, leading to life-long disability and shortened lifespan. There are currently no cures or effective therapies. But promising laboratory studies have indicated the commonly used breast cancer drug, tamoxifen, may be an effective treatment. Using existing drugs for other conditions is one of the fastest ways to develop new treatments, as the drug is already safely used in humans.

04 WHAT: Using gene therapy to the eyes and brain to correct the most common genetic mistake that leads to Bardet Biedl Syndrome (BBS).

WHERE: Brunel University of London.

WHY: BBS is a rare genetic disorder affecting multiple organs. Serious symptoms include blindness, unusual weight gain and learning difficulties; there is no cure.

Almost half of BBS cases are linked to an error in a specific gene, BBS1. Delivering a corrected version of the faulty BBS1 gene to the brain, researchers have demonstrated they can prevent weight gain and brain abnormalities in mice with BBS. The team want to assess whether the same method can be used to slow or stop loss of sight and tackle the three most serious symptoms of the disease with one treatment.

Clinical trials PIONEER 9

05 WHAT: Aiming to replace the faulty gene causing deafness in children with Norrie disease, saving the hearing of boys who are born blind.

WHERE: UCL GOS ICH. WHY: Norrie disease is a rare genetic condition primarily affecting boys; they’re born blind and, from around 12, can begin to lose hearing. As hearing loss is a later symptom there’s opportunity to intervene to delay or stop it.

Gene therapy is a promising technique involving correcting genetic faults in patients’ DNA, by delivering corrected DNA to their cells. Children with Norrie disease have a mistake on a small gene (called NDP) responsible for how cells and tissues develop, and researchers want to identify whether replacing the faulty NDP gene could preserve hearing.

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06 WHAT: A lifestyle weight management programme for children with conditions that strip the outer protective layer of their nerves, like multiple sclerosis (MS) or Neuromyelitis Optica Spectrum Disorder (NMOSD).

WHERE: Oxford Brookes University.

WHY: NMOSD and MS are both conditions in which the protective coating around nerves becomes damaged, affecting vision and mobility, which, in turn, may impact school performance and social activities. These conditions may lead to reduced physical activity and, combined with steroid treatment, can result in significant weight gain, muscle wasting and further reduced mobility. This project aims to develop a lifestyle-orientated weight management programme to help children with these conditions.

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WHAT: Aiming to tackle all symptoms of a complex multi-organ disorder, Arthrogryposis Renal dysfunction and Cholestasis syndrome (ARC), with two types of gene therapy at once.

WHERE: UCL GOS ICH. WHY: Arthrogryposis Renal dysfunction and Cholestasis syndrome (ARC) is a severe multi-organ disorder affecting the liver, kidneys and bone marrow cells. Most patients die in early childhood.

ARC is caused by genetic mistakes that lead to a lack of two molecules in the body. Researchers want to correct the genetic mistakes and treat as many of the symptoms all at once. If successful, this could provide the first hope of a treatment to tackle the main symptoms of ARC and change the odds of survival.

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WHAT: Aiming to unravel why certain genes are affected in craniosynostosis, and whether they could offer a new diagnostic tool for the condition.

WHAT: Developing a new approach to gene therapy for Dravet syndrome, a rare, inherited and aggressive epilepsy.

WHERE: University of Oxford.

WHERE: University College London.

WHY: Craniosynostosis is caused by early fusion of narrow gaps (sutures) between skull bones when a baby is born. Sutures allow the skull to expand as the brain grows. If the gaps close too early, this can cause severe problems including raised pressure in the brain, intellectual disabilities and problems with seeing, hearing, eating and breathing.

WHY: Research shows Dravet syndrome is often caused by mistakes in a gene called SCN1A, which provides ‘instructions’ underpinning nerve activity. The ‘mistake’ causing Dravet syndrome leads to seizures, co-ordination, balance and speech problems, cognitive impairment and, in some cases, death. Sadly, the disease is currently largely untreatable.

It’s often caused by multiple factors and, in about a quarter of cases, a specific genetic mistake can be identified, which can help inform how the condition may progress and what treatment a child requires.

If this study is successful it could help offer a new diagnostic test to understand why a child develops craniosynostosis, giving families a better understanding. The study is the continuation of the partnership between researchers at the University of Oxford and at UCL Great Ormond Street Institute of Child Health.

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Recently, techniques correcting the genetic mistakes that lead to diseases have emerged, using molecular ‘scissors’ and ‘glue’ to remove and replace the faulty section of DNA. The hope is that by using similar different molecules inspired by these ‘scissors’, it will reduce or eliminate the reaction of the immune system.

The research team hopes to use this new geneediting technique to correct the genetic mistake responsible for Dravet syndrome, constituting a world first.

WHERE: UCL GOS ICH. WHY: Liver diseases, like non-ketotic hyperglycinemia (NKH), can affect babies and young children. NKH is a genetic disorder affecting one in 60,000 children in the UK, causing lethargy, weakness, seizures and mental development difficulties. There are few treatment options for children with NKH but new cell-based therapies may offer a helpful treatment.

Stem cells can transform into any cell in the body and progress has resulted in the ability to produce spheres of human liver cells that can function like the liver. This project will take it to the next step, the basis to develop a more efficient way of treating children with NKH by reducing physical symptoms, improving child development and quality of life.

11 WHAT: Understanding more, through gene and brain activity testing, about a range of conditions that affect the chemicals allowing nerves to communicate – Synaptic Vesicle Cycling (SVC) disorders.

“Thank you to everyone who has made generous donations to the charities. Child health is an immensely important area of research, and it’s fantastic to know these charities [fund] child health researchers across the UK.” Dr Hassan Rashidi, Senior Research Associate at UCL Great Ormond Street Institute of Child Health

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WHAT: Developing a ‘liver patch’ that could provide liver support to patients with a genetic liver disorder.

WHERE: University of Cambridge.

WHY: SVC disorders affect how the brain processes chemical messages. Around 2% of children with the disorder are affected by different types of brain disorders, leading to complex problems such as learning difficulties, autism, epilepsy and mental health issues.

Investigating differences in DNA could help identify the cause of up to 60% of these brain disorders, creating opportunities to treat the underlying root cause. If the team is successful, they’ll be closer to developing SVC disorder-specific treatments.

Patient care

Bedside

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EDEN’S PROGRESS AT GOSH Eden was diagnosed with neuroblastoma, a tumour in her abdomen that was already 15cm long when it was discovered. Mum Emma talks to Pioneer about the family’s GOSH journey.

EMMA EDEN’S MUM For weeks, 14-month-old Eden had been unwell, catching colds and viruses.

“We were back and forth to my GP constantly,” Eden’s mum Emma says. “I knew there was something wrong but never in a million years did I think she had cancer.”

Eden’s local hospital sent the family in an ambulance to Great Ormond Street Hospital (GOSH), where Eden was later diagnosed with neuroblastoma – a solid mass tumour in her abdomen that was already 15cm long when it was found.

Neuroblastoma is a rare, aggressive type of cancer that most commonly occurs in one of the adrenal glands situated above the kidneys.

“Our whole world crashed and shattered around us, so dramatically fast,” Emma says. “We had no control over what was happening. Once we were told she was going to GOSH there was a huge sense of relief, as we knew we were going to an amazing, world-renowned children’s hospital.”

Eden stayed on Giraffe Ward [which treats children with cancer and leukaemia] for three weeks, where she was treated with chemotherapy straight away. Her chemotherapy treatment continued for many months.

“It’s very intense,” Emma adds. “It changes your whole perception of life. She couldn’t eat, she slept, she couldn’t talk. Most adults don’t want to think about children having cancer but when you’re faced with it, it’s an absolute game changer.”

After about a year of chemotherapy, doctors at GOSH then recommended Eden should have immunotherapy – a treatment that uses the body’s own immune system to attack cancer cells.

While Eden was at GOSH, she loved interacting with the Play team, which is funded by GOSH Charity.

“GOSH was a familiar place for her and the Play workers and Play specialists became a massive part of her treatment and recovery,” Emma explains. “They can see when a family is struggling or when a child is particularly poorly, and they make the time to come in and sit with you and just play.

“There were days when I just wasn’t coping very well.

If the Play team saw you, they would come in and sit with Eden and you’d be able to go and have 20 minutes or so to yourself. And, by the time I would get back, Eden would be this little beaming, buzzing, happy girl, playing with someone from the Play team she would say is one of her best friends!

“The Play team is working there because of those children and it makes a real difference to their day.

Whether it’s playing with ‘slime’ or Play-Doh, painting or playing with Lego, Eden would come and sit down and want to do it.”

After weeks of treatment and anxious waiting, Eden and her family received the good news that her neuroblastoma was under control. Eden was able to leave hospital just before Christmas and in time for her birthday in January.

“Eden was able to ring the end-of-treatment bell and we had all of our family there,” Emma says. “We made a cake, it was really one of the most special moments ever.”

Eden will continue to have regular check-ups at GOSH over the next few years.

“GOSH will always be the place who let me keep my baby,” Emma adds. “She’s now definitely living her best life! Eden’s best life is experimenting with arts and crafts, playing with her little sister, being with her family, going to school and just everything a child should enjoy, she gets to enjoy now. Everything is possible. She loves life and playing – she’s a real girly girl.

“A charity donation is not just a donation to the hospital, it’s a donation to families – to every mum or dad who has to walk through those doors, or it’s for the Play workers and Play specialists who make that really difficult day for a child a little bit nicer. I truly believe if Eden didn’t go to GOSH, I wouldn’t have her.”

“Immunotherapy is absolutely pivotal to the treatment because, without it, the cancer would just come back,” Emma explains.

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PIONEER INTERVIEW

What are the trial’s next steps?

While all these conditions are rare, to run trials with enough patients and obtain quicker answers, they need to run internationally. We’ve now got a global study open where, over the next 18 months, we’re randomising children with low-grade glioma to either receive the standard care of surgery and chemotherapy or the oral medication.

We’ve also been running a sister study using a MEK inhibitor. In low-grade glioma, sometimes the BRAF gene is switched on by a different mechanism where the genetic code has got mixed around and part of the BRAF gene gets put beside another gene; we call this a fusion gene. We know the Dabrafenib won’t work in that case but, if you target the same genetic pathway lower down with a MEK inhibitor, you can block the pathway and possibly stop or shrink the tumour.

MEK inhibitors have been used alongside Dabrafenib in adult melanoma (skin cancer) patients so, while we were running the Dabrafenib study, we started running the MEK trial. Again, we got good results in low-grade glioma patients (both BRAFV600 and fusion) who had tumour growth after standard of care (surgery, multiple chemo, radiotherapy, proton beam therapy).

THE ROAD TO BETTER TREATMENTS Pioneer chats to Professor Darren Hargrave, GOSH Consultant Paediatric Oncologist and Clinical Professor of Paediatric Neuro-oncology, about his work on clinical trials looking into improved treatments for childhood cancers.

You recently published results from a clinical trial where cancer patients took oral medication and saw shrinkage of their tumours – what did this trial involve?

One of the trials we’d been conducting was the BRAF inhibitor trial, which has been taking place over the last three years. BRAFV600 is a gene mutation, originally found in adult cancers, so we began to screen for it in paediatric cancers and discovered the same type of mutation in several different childhood cancers. One of those was glioma, a type of brain tumour. Gliomas can be low-grade glioma, the most common, to high-grade glioma, which is aggressive with low survival rates.

We took part in a global study where we used Dabrafenib, a specific inhibitor that blocks the mutation. This daily, oral medication was given 14 PIONEER

to children if their tumour had returned after traditional treatment.

The first phase of the study was working out the right dose for children, and any potential side effects, and the second phase was how children responded.

We published the results of the first part of the study in December 2019 in Clinical Cancer Research, regarding its safety, and reported that, in the group of 32 patients with low-grade glioma, we had very good responses. The tumours shrank in a large percentage of the patients.

Although not published yet, we found similar results in the more malignant, high-grade gliomas; in that group for some patients it’s been quite remarkable.

We now believe the combination of these two drugs together is a way forward for BRAFV600 gliomas. In our global study we give these two drugs and we compare against standard chemotherapy. If the results at the trial’s end are positive, these two oral medications will become the new standard of cancer care for children.

How important is funding from GOSH Charity to be able to conduct these clinical trials?

We wouldn’t be able to run trials without the infrastructure the charity funds or support the large team that’s needed to run them. This includes, among others, research nurses, trial managers and my joint role as Professor of Neuro-oncology, working across UCL Great Ormond Street Institute of Child Health (ICH) and GOSH, which is charity funded. We’re trialling new drugs so we need to be aware of all the benefits and possible new side effects; without that infrastructure we wouldn’t be able to.

“We wouldn’t be able to run trials without the infrastructure the charity funds or support the large team that’s needed to run them.”

It’s also about the support for research. For example, the drugs in these trials work well but we’re now trying to work out why some tumours respond to a certain level and then become dormant, but they can reawaken and start to grow again when the

“If the results at the end of the trial are positive, these two oral medications will become the new standard of cancer care for children.” targeted drugs are stopped. It seems that entering this dormant phase may protect the tumours from being killed completely by our treatments. We’re working with our science colleagues at ICH to understand why this happens, how we can stop this protective dormant phase so we can ultimately get rid of the tumours forever. We’re trying to use patient’s tumour samples in the lab for iterative research and some of that is funded by GOSH Charity. It echoes just how widespread and important charity funding is. We all work together. The pinnacle is to then move it from research to testing to making it available on the NHS.

How has charity funding of your professorship benefitted progression of the clinical trials you’ve been working on?

GOSH Charity funding has allowed me to spend more time on research, both clinical trials plus collaborating with colleagues in the labs at ICH. I still work as an NHS consultant treating children with brain tumours at GOSH but, rather than spending only 20% of my time on research, the charity funding allows me to devote more than 60% of my time on research, which I hope, in the long term, will benefit more patients. And while lab work at UCL has been on hold during the COVID-19 crisis, myself and all my clinical fellows returned full time to NHS frontline work to support our NHS colleagues looking after childhood cancer patients.

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2020 INTERNATIONAL YEAR OF THE NURSE SPECIAL

Shining a spotlight on GOSH nurses The last few months have highlighted, more than ever, just how amazing our NHS teams are. As 2020 also marks the International Year of the Nurse, Pioneer celebrates the work of GOSH’s incredible nurses in a 10-page special.

2020 INTERNATIONAL YEAR OF THE NURSE SPECIAL

1887

Catherine Wood (who introduced a nursing training programme at the hospital) becomes a founding member of the Royal British Nurses Association

1937

The inaugural meeting of GOSH’s Nurses’ League takes place

1951

1980S

2003

Matron Gwendolen Kirby is the first nurse to attend board meetings at the hospital

A small group of junior nurses creates pioneering international medical guidelines to help care for children with mouth infections

GOSH introduces the role of Consultant Nurse

What is International Year of the Nurse?

The World Health Organisation designated 2020 as the International Year of the Nurse [and Midwife], bringing the professions into the spotlight. In a year that’s also the bicentenary of the birth of Florence Nightingale, the international campaign highlights that the world will need nine million more nurses and midwives by 2030 if it’s to achieve its goal of universal health coverage by 2030. Shining a spotlight on the critical work nurses do is, therefore, integral to meeting that goal.

Nursing at GOSH Since the hospital was founded, nursing at Great Ormond Street Hospital (GOSH) has grown to become a respected and vital profession, spanning many different specialisms from neonatal to neurosurgery, mental health to cardiology and research. But when the hospital opened, opportunities were scarce, as nurses were seen as housekeepers rather than medical professionals. However, with the support of GOSH founder Charles West, nurses at the hospital forged a training programme in the late 1880s, which eventually led to the creation of the GOSH Nurses’ League in 1937.

The first nurse to attend hospital board meetings was Matron Gwendolen Kirby in 1951. Since then, nursing at the hospital has grown dramatically. Today, GOSH nurses are an integral part of the multi-disciplinary teams delivering the best care to patients and families.

Since 2019, nursing has taken another leap with the launch of the GOSH Learning Academy, with the help of funding from Great Ormond Street Hospital Children’s Charity (GOSH Charity).

Research and nursing

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2010

GOSH launches the first nurseled UK programme for provision of home haemodialysis, using portable dialysis machines for children

2012

The GOSH Manual of Children’s Nursing Practices launches

2015

GOSH Endocrine Clinical Nurse Specialist Sally Tollerfield develops a smartphone app to help parents with children diagnosed with cortisol deficiency

2019

GOSH Charity commits to invest in the launch of the new GOSH Learning Academy

Research is essential to understand more about childhood conditions. At GOSH, support from clinical research nurses is key to helping embed research into all aspects of care. Clinical research takes place across the whole hospital, although much of it is based in its National Institute for Health Research Clinical Research Facility. Having dedicated clinical research nurses gives families the opportunity to participate in a clinical trial when there may be limited or no treatment options available.

The support provided by clinical research nurses includes recruiting children and young people to a trial, administering the trial medication, and performing laboratory work. There are now more than 40 clinical research nurses working at the hospital.

THANK YOUS FROM FAMILIES PANTHER WARD “Amazing nurses who can’t do enough to help and make something that isn’t nice a lot more bearable. Can’t thank you enough – you’re all superstars! “ PIONEER 17

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A LEARNING ACADEMY FOR ALL AT GOSH The innovative Learning Academy, part funded by GOSH Charity, launched at the hospital at the end of last year. Pioneer discovers the impact it will have on nursing and the subsequent benefits it will bring to patients and their families.

Great Ormond Street Hospital Children’s Charity (GOSH Charity) has committed to raising £15 million towards the Learning Academy.

“Come to train, stay to learn!” That’s the rallying cry from Great Ormond Street Hospital’s (GOSH) Learning Academy Director of Education Lynn Shields (right).

GOSH is already one of the biggest providers of undergraduate children’s nursing training in the world, with up to 150 currently training in the Trust, alongside the hundreds more undergraduates across other disciplines. Now, the Learning Academy is aiming for GOSH to benchmark as highly for its training, education and development globally as it does for clinical care, in turn attracting the best staff to offer the best care for its patients.

“If you want to be a high-performing, high-achieving organisation, you should be a learning organisation and facilitate improvement in education,” Lynn explains.

“GOSH has always been an educator but, before the launch of the Learning Academy, education was siloed.

We care for patients and their families as a team so it’s key we learn together as a team.”

The idea for the Learning Academy originated in 2016 when the NHS Trust put investing in education and training – both clinical and non-clinical – as an integral part of its overall strategy. “It’s linked to patient outcomes and patient safety,” Lynn adds. “When GOSH initially brought the case of funding support to GOSH Charity, it was blown away by the fact we offer more than 5,000 courses, we train more than 5,000 staff but, to move education into that same space we’re known for care and research, we need investment to get there.”

“We work closely with the charity grants committee to make sure we demonstrate the link to patient experience, outcome, safety and staff development and retention.”

In addition to investment from GOSH and Health Education England, GOSH Charity is also committed to raising funds for the Learning Academy. “We work closely with the charity grants committee to make 18 PIONEER

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INVESTING IN THE NEW GENERATION Meet two student nurses currently on placements at GOSH. Q: Why did you choose to do your placement at GOSH?

sure we demonstrate the link to patient experience, outcome, safety, link it to staff development and retention and people feeling valued and invested in, which then improves the quality of care we deliver,” Lynn says. “Nowhere else has approached education, training and development in the multi-professional way by pooling undergraduate and post-graduate Medical and Nursing education as well as Allied Health, Healthcare Science, and Non-Clinical education under one umbrella.”

Everything that is crucial to GOSH’s success is then mirrored in the Learning Academy’s six priorities: Academic Education, Apprenticeships, Clinical Simulation, Clinical Specialty training, Leadership, and Technology Enhanced Learning. “What we are working towards is a scenario where when a nurse has a complex patient to look after, they can go on to their virtual learning environment and download education around that patient. When we have this and when it is linked with our Electronic Patient Record, it will be pulling together other elements the charity has supported. And, by increasing our offer and being known as a specialist provider of education, training and development, that can only attract the best staff.”

While some of the courses available via the Learning Academy were already on offer, fresh elements have been introduced. From this year, for example, every newly registered nurse who’s joined the organisation had the option of stepping onto a Masters’ pathway.

While GOSH has always offered preceptorship [supporting newly qualified nurses make the transition from student to develop in practice], it’s now validated by its partnership university. This means nurses can receive academic credit, have up to five years to complete their Masters, and can step into the academic modules on offer. “About 45 nurses have taken this up since October, which means we will hopefully keep these highly trained nurses at GOSH for those five years,” Lynn adds.

Like other parts of the hospital, evolving and adapting are key drivers at the Learning Academy, which has been evident with its response to education and training during the COVID-19 pandemic. To date, more than 1,500 clinical and non-clinical staff have attended its COVID-19 up-skilling and updating sessions, including many colleagues joining from external Trusts.

“Learning Academy staff have also been assisting in the wider effort both elsewhere in the Trust, leading and facilitating urgent areas such as staff testing, as well

A: I was driven by GOSH’s wonderful reputation and specialist care and wanted to experience exposure to the rare and complex conditions treated here. I’d also heard just how friendly GOSH staff are!

Q: What’s the best part of working in Theatre and at GOSH?

CRAIG ROYCE THEATRES AND RECOVERY 2nd year, London South Bank University

A: There’s so much! From a training point of view, you’re shown how to develop all elements of nursing knowledge and skills. One of the best parts about being a nurse is

Q: Why did you choose to do your placement at GOSH? A: GOSH has a wide variety of different specialities which provides a greater learning opportunity, and it offers highquality simulation programmes to teach us skills in a safe environment with support.

Q: What’s the best part of working on Giraffe Ward and at GOSH?

AYSHA WALKER GIRAFFE WARD 3rd year, City, University of London

A: I feel comfortable and confident around the staff and patients I work with. Both the ward and hospital support my learning and show me how competent I am in different areas. As a thirdyear student, the staff are not only preparing me clinically for

as outside of GOSH,” adds Lynn. “We’re proud to say that some of our Learning Academy staff provided education for the Nightingale Hospital at the Excel Centre.”

Find out more: gosh.nhs.uk/education @GOSHLearnAcad Please support our Summer Pioneer Appeal, which is raising funds towards the £15M GOSH Charity have committed to the GOSH Learning Academy.

Visit gosh.org/pioneer to make a donation today.

some of the great interactions we have with patients and families.

And the team here have all made me feel so welcome; they’ve committed so much time to my training, for which I’m very grateful.

Q: What do you know about the training opportunities available at GOSH? A: There’s a great deal of room for progression and development here, if you put the work in, which is an exciting prospect and definitely something to consider when applying for jobs. I do hope to work for GOSH in the future.

registration but also helping me with interview preparation and personal statement writing. Some of the patients on Giraffe Ward will remain an inpatient for a while so I do work closely with them to try and restore some normality into their lives between treatments.

Q: What do you know about the training opportunities available at GOSH? A: GOSH holds many study days and training courses, which is brilliant because it pushes us to continue learning, as well as improve on our skills. This encourages me to apply in the future as I know there’ll be opportunities to progress.

THANK YOUS FROM FAMILIES OTTER WARD “All the nurses and staff are kind, caring, patient and very informative. Thank you for looking after my little boy.”

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NALLY’S STORY

NURTURING NEW NURSES Pioneer meets the people who are benefitting from the hospital’s supportive culture and training opportunities to become GOSH nurses.

“Ricardo has taken care of my son Nally on Elephant Ward. Just like all the other nurses, he is amazing. He is caring and supportive. But I also believe he has a gift. He knows how to make people laugh and makes you forget about the fact you are in hospital. My son adored him. He was so caring that even if he wasn’t Nally’s nurse for the day or night, he would still pop his head in to say hi and check on us all. He made our stay on Elephant Ward, as strange as it sounds, fun. Thank you to Ricardo and all the nurses who work in GOSH for all the care.

You guys are special to our family.”

Shay, Nally’s mum.

RICARDO TABOSA SANTOS NURSING ASSOCIATE Thanks to support from colleagues, Ricardo (pictured above) went from working as a housekeeper at Great Ormond Street Hospital (GOSH) to becoming a qualified Nursing Associate on Elephant Ward, caring for children with cancer and leukaemia. In April 2020, he celebrated his one-year anniversary of qualifying.

How did he get there? After working in housekeeping for a year, Ricardo applied for a role as a healthcare assistant. “I then applied to be a training nursing associate (a position created in 2018) and I trained for two years,” he says.

Describing what motivated him to expand his skills, Ricardo explains: “I have always wanted to learn and develop. I am not ashamed to say, ‘I don’t know’.

Fortunately, you can be whatever you want to be at GOSH. You just need to work hard and be honest. And I was also lucky to have a lot of support from my management team because they believed in me. They have always motivated me to talk about my development.”

“This is the best hospital and I’ll stay here until I retire.”

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“I feel very lucky to be working on Elephant Ward, because it’s such a good environment to work in. The nurses here are so keen to do well. It motivates me to do as well as they do,” Ricardo adds.

Caring for the whole family Talking about what he wants the world to know about GOSH, Ricardo says: “We support parents with everything; from accommodation and transport to help with psychology and social workers.

“We also look after their children so they can go out for a meal and have their own time. We have afternoon tea once a week where they can talk to each other and share their thoughts. If the parents are mentally and physically well, it will reflect back and facilitate our care.”

Sometimes it can be difficult to balance supporting parents, especially because parents on Elephant Ward tend to stay there for long periods of time. Luckily, charity funded support services such as the Play team and Spiritual Services are there to help.

“Play workers are key,” Ricardo adds. “Sometimes we have patients with compromised mental health, and the Play team also helps us with the care we give. If we don’t talk it through, it’s harder to deliver the care.

It’s about giving control back to the patients. They

feel more co-operative and then most of the time the Play workers know how to do things differently for specific patients.”

The charity means a lot to Ricardo. “Every single penny counts towards a better future. [We see every day] how the money donated is used well,” he says.

Looking forward Ricardo’s next step will get him even closer to becoming a registered nurse. He will be embarking on more training in 2020 and is aiming for a nursing degree.

“I need to go back to university and achieve level six academic credits,” he explains, “and I want to do my nursing degree. It seems like the Learning Academy also wants me to do it! That motivates me to do well.”

MEL MONAFRED TRAINEE NURSING ASSOCIATE After working as a GOSH healthcare assistant for just under a year, Mel (above right) applied for an apprenticeship as a Nursing Associate within the National Institute for Health Research (NIHR) Clinical Research Facility at GOSH.

She says: “I’m still buzzing. The apprenticeship is two years long so I’m looking forward to it and I hope I will pass with flying colours.”

Universal support The supportive culture at the hospital helps staff members like Mel to develop their skills. “My manager encouraged me to apply for this apprenticeship because she thought I’d be a good candidate,” Mel says. “Support comes from everywhere. The staff are very welcoming.

“Everyone gives you time to learn,” she adds. “We also have tutors and mentors. Everyone from the university [that provides the educational side of the apprenticeships], the teachers and lecturers, are very supportive. You can also get support if you have learning disabilities such as dyslexia, which helps with learning and academic writing.”

The future Mel values the skills she’ll gain when progressing her career at GOSH. She says: “If I learn more, I can offer more. Before, as a healthcare assistant, we were limited in what we could do. After finishing this, I’ll be able to look after patients at a different level. It’s amazing that opportunities are opening for staff to learn and excel. After the two years apprenticeship, I’ll give myself a year to practice what I’ve learnt so I get more confident. Then I’ll look to become a fully qualified, registered nurse!”

THANK YOUS FROM FAMILIES NIHR CLINICAL RESEARCH FACILITY “The nurses are so friendly and caring – genuinely taking an interest in each child’s wellbeing and making sure they are happy and comfortable as possible at all times.“ PIONEER 21

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PIONEER INTERVIEW At the helm of GOSH’s nursing workforce is Chief Nurse Alison Robertson. She chats to Pioneer about her career and how GOSH and GOSH Charity support her nursing teams.

It was a welcome return for Alison Robertson when she took up her position as Great Ormond Street Hospital (GOSH) Chief Nurse in early 2018, the second time she’d stepped through the hospital’s doors. Having trained at GOSH in the 1980s, Alison held her first staff nurse post in its neurosurgical unit. “I stayed at GOSH for my first job as I wanted to consolidate my experience after training and I’d enjoyed my placement as a student,” Alison explains. “The transition between a student and a staff nurse can be challenging. Being somewhere familiar, and having an understanding about the patients you’ll be working with, can help. It’s something I would encourage all nursing students to do.”

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“Our nurses do a fabulous job… with support and development they can develop their skills and confidence to give the best care.”

Street Hospital Children’s Charity (GOSH Charity) to establish the GOSH Learning Academy (GLA). “It’s early days, but we’re ambitious in what we want to achieve; to be the first choice for multi-professional paediatric healthcare education, training and development.

We’re the largest provider of continual professional development in London so already have a strong foundation. With the help of GOSH Charity we’ll be able to invest in technology to develop contemporary learning environments, including expanding clinical simulation facilities that enables teams to rehearse before facing challenging clinical situations for real.”

A better working environment

The intervening years between Alison’s first staff nurse Alison believes seeing how GOSH Charity funds the post at GOSH and her role as its Chief Nurse means she hospital in practice motivates staff. “We’re lucky to has built up an impressive portfolio have its supporters and we’re hugely across various nursing specialties in appreciative. Funding has enabled hospitals, community practice and us to buy specialist equipment “Once a paediatric abroad. She’s worked in a children’s and there’s been transformational emergency department, been a nurse, always a support for new buildings such as clinical nurse specialist for children the Zayed Centre for Research into paediatric nurse!” with cystic fibrosis - with an emphasis Rare Disease in Children, as well as on supporting them to stay well and the refurbished Cardiac Catheter Lab at home with their families - a head of [which will allow GOSH to carry out nursing for children and young people services, and five more heart surgery procedures in a less invasive way]. previous Chief Nurse roles. She came to GOSH following She highlights how charity support has boosted staff four years as Executive Director of Nursing for Al Wakra morale during the COVID-19 crisis. “The pop-up shop [a Hospital, Hamad Medical Corporation in Qatar, one of free shop for staff stocked with household essentials and the leading hospital providers in the Middle East. ready meals, secured by the charity and its partners] “It’s a real privilege to be the Chief Nurse at GOSH and, and the gifts in kind have been gratefully received. The when I saw the post advertised, I jumped at the chance nursing staff have been brilliant during the crisis; some as paediatrics has always been my passion. Once a temporarily transferred to support colleagues in adult paediatric nurse, always a paediatric nurse!” she adds intensive care units in the local area Many refreshed although, as GOSH Chief Nurse, her role is manifold. “I’m and adapted their skills and knowledge to look after responsible for everything to do with nursing, making patients they’re less familiar with, and our nurse sure we have the right nurses with the right experience educators delivered skills training for more than 2,000 in the right place at the right time,” she says. staff. Many clinical nurse specialists also helped develop information guides to support GOSH families during this Essential education crisis. I’m immensely proud of all of our nursing teams.

Since the hospital opened its doors in 1852, education and training have been vital to the development of nursing “Looking after very sick children can be emotionally standards and practice. Children and young people with challenging. We must support the nursing teams to rare and complex conditions come from across the UK replenish their emotional health and wellbeing. Our and the world to access highly specialised services and staff need to look after themselves to manage what they delivering excellence in nursing is fundamental to their encounter on a daily basis. Our nurses do a fabulous job, care and the outcomes that are achieved. In 2019 the it’s challenging but with support they can develop their GOSH education team partnered with Great Ormond skills and confidence to give the best care.”

GOSH Chief Nurse Alison Robertson - this photograph was taken before the COVID-19 crisis 22 PIONEER

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Meet our

Clinical Nurse Specialists Pioneer chats to two of GOSH’s Clinical Nurse Specialists – roles that combine clinical practice, research, teaching, consulting and management – about their fantastic work looking after the hospital’s patients.

Evey Howley, Immunology Clinical Nurse Specialist (CNS) – Thymus Transplant (pictured right) How long have you worked at Great Ormond Street Hospital (GOSH)?

Seven years; I worked in GOSH’s National Institute for Health Research (NIHR) Clinical Research Facility in various posts for five years and have been in my current role for the last two, now based at the Zayed Centre for Research into Rare Disease in Children.

Tell us about your current role.

All CNS posts are unique; mine focuses on preparing and delivering care for children and their families, undergoing thymus transplants [the thymus is a gland responsible for educating the T-cells that help fight infections]. GOSH is the only European referral centre for thymus transplant and I’m the only thymus transplant immunology nurse in Europe.

I work closely with the inpatient clinical team to plan the children’s care and am in contact with the families and local clinicians before and after admission, providing follow-up care for several years after their initial treatment.

In order to collect thymus for transplant, I also approach families of children undergoing cardiac surgery to ask them to consider donating thymus tissue if removed as part of their routine cardiac procedure.

I do this by consenting them within strict research governance protocols. Some of the thymus tissue donated will be for the recipient thymus transplants and some will be for our research programmes.

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And, because nursing is such an expert workforce and we need to be up to date all the time, having access to continuing education via the GOSH Learning Academy, which the charity supports, is really important to us.

Jinhua Xu-Bayford, Gene therapy/ Immunology CNS Lead (pictured above) How long have you worked at GOSH?

What do you enjoy most about your role?

Being able to meet with, and care for, the children and their families. I’m very appreciative of the time I spend with families, allowing me to be part of their journey, and especially families donating tissue who have a child of their own undergoing surgery and helping other families at a stressful time. As I don’t get to see the families that come to us from Europe after their discharge, they often send me photos, which makes my day when I receive them. These families know they can

“I’m very appreciative of the time I spend with families, allowing me to be part of their journey.” email me anytime and it’s important to them to have one person to touch base with.

How do you see GOSH Charity funding impact your daily working life?

You can see so many benefits to the families, for example the parent accommodation nearby, which the charity supports, is so valuable. I’m also based at the Zayed Centre for Research, which opened last year thanks to the transformative support of Her Highness Sheikha Fatima bint Mubarak and other generous charity donors. It’s a really wonderful environment to work in. The funding that also goes into the LetterOne GOSH Charity Research Group into Thymus Transplantation is crucial, and our thymus transplant children wouldn’t be able to have the care that comes from research without it.

I’ve been here for more than 20 years and, as a CNS for almost 16 years, have worked on haematology/ oncology and bone marrow transplant wards looking after patients with haematology and immunology conditions. I now work as a CNS lead managing mainly clinical trial patients who are undergoing gene therapy procedures.

Tell us about your role.

No two days are the same, because we respond to patient needs, which can be unpredictable. There are two parts to my role; caring for patients on gene therapy trials and looking after patients who require treatments such as bone marrow transplant. My role combines all aspects of nursing that I love – direct patient care, ethics and genetics, and cutting-edge research – and I enjoy working with a large team.

It can be a very emotional role. For example, patients I cared for when they were babies are now 18, 19, 20 – some of their cases were highly complex but to see them now, all grown up, and they tell me how GOSH saved them, is incredibly moving.

“A huge part of my role is research and I wouldn’t be able to do that without charity support.”

How do you see GOSH Charity funding impact your daily working life?

GOSH Charity has done a huge amount in supporting us, enabling our clinical team to develop and help patients with rare complex conditions and support their families. A huge part of my role is research and I wouldn’t be able to do that without charity support.

Thank you so much to our supporters.

WE LOVE GOSH NURSES! ONE FAMILY’S STORY At seven years old, Sophia (pictured above) came to GOSH for an operation to remove a Thyroglossal Duct Cyst; she’s been cyst free since. Her mum Kirstie tells us why her family are so grateful to all the nurses here.

“One day I saw this huge lump on Sophia’s neck, it looked like a plum. We were referred to our local hospital, had the first procedure to remove the cyst but knew there was a risk it could return. She was diagnosed with a Thyroglossal Duct Cyst (TDC), a congenital cyst of the neck. Unfortunately, after the first operation the cyst came back, so that was quite a big worry. Sophia’s GP decided to refer her to GOSH where the decision was made that she’d need major surgery to remove the cyst.

“GOSH nurses were so lovely during our time at the hospital.

They spent time with Sophia and made her feel comfortable.

Seeing Sophia was okay and feeling looked after made me feel so confident in the hospital and its staff.

“And they gave so much emotional support. Once, when Sophia was asleep, I fell to pieces walking out of the room.

I had a nurse holding me and walking me all the way back to the ward. She was talking to me and trying to keep me calm. She could see how upset I was, and she said to me, ‘mum, you’re doing a fantastic job’. The emotional support I received… I couldn’t have asked for more. It feels like you’re not on your own.

“Sophia also says ‘I have a lot of memories of befriending the nurses, it’s like every single nurse there was my best friend’.”

THANK YOUS FROM FAMILIES CHAMELEON WARD “We encountered this member of staff on a number of occasions during our three-and-a-half-week stay. She was the kindest, sweetest, most gentle nurse.

She is an outstanding nurse who really made a difference to my daughter.”

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Cathie’s mum’s GOSH badge on the left and Cathie’s on the right

Cathie and her son Joe

Striving every day for clinical excellence I worked as a student nurse, staff nurse and ward sister at GOSH from 1973-1984. After qualifying I stayed on ward 7AB. Children from all around the world were treated there under the care of many different consultants. I had some wonderful teachers and worked alongside many inspirational nurses and doctors, play therapists, psychologists and physios. I also had to develop my understanding of many different cultures, as it was a multi-lingual environment.

Cathie’s last day working for the NHS in 1996

I was always so proud to be part of GOSH. There is something very special about being part of a multidisciplinary team that exists solely for the child and their family – striving every day for clinical excellence. Hard work, laughter, tears and humbling moments.

“Hard work, laughter, tears and humbling moments” WHY I SUPPORT THE CHARITY Retired GOSH nurse Cathie Fraser told Pioneer about how important the hospital has been to her family across three generations, and her wish to help young patients at GOSH for generations to come through a gift in her Will.

A GOSH romance and nursing during WWII My parents met at Great Ormond Street Hospital (GOSH) before the war. The romance between a staff nurse and a registrar was frowned upon by the nursing hierarchy but encouraged by the ward sister, a formidable woman (who was to become my elder brother’s godmother in 1953).

My first job as a new student was given to me by a fiery but fair and very skilled ward sister. “You! Nobody stands still on my ward – get along nurse and mop up that vomit,” she’d say. Fresh out of Preliminary Training School, I couldn’t even remember which colour cloth to use but just got on with the job.

I spent the next two weeks in the sluice, washing My mum remembers wartime at GOSH, memories such stainless steel bedpans and red rubber draw macs. as a bomb falling through the roof that didn’t explode Once allowed out onto the ward I gradually gained and sunbathing on the flat roof of Guilford Street Nurses confidence. Every day was a new experience and Home while fire watching for flares and incendiaries it was simultaneously on the very same roof. She terrifying and exhilarating remembers being woken but I knew I was in the right “There is always something very after night duty to help place. I remember the first special about being part of a evacuate the children to the injection I multidisciplinary team that exists intra-muscular hospital’s country branch at gave, the first baby I nursed the time, Tadworth Court. solely for the child and their family” in an incubator, the first My mum told amazing stories of nursing and medical care of sick children.

Some truly heroic, and others desperately sad.

Memories of GOSH in the 1970s-80s “I started my nurse training at GOSH in 1973, the October ’73 set. All 47 of us became a bit notorious I think during our training! I learned so much and grew up quickly.

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ventilated child I cared for. I remember the name of the first child I looked after who died. The endless theatre lists and consultant rounds.

Giggles and shrieks of laughter from the playroom and bubbles floating off the balcony. Working so hard, being so tired, days when the ward team was triumphant and days when the ward team was sad.

Always lovely children and families.

I left to set up a children’s department at Ipswich Hospital in Suffolk where I continued my journey, using all the valuable skills I had learned at GOSH and learning some new ones! After 23 years full time in the NHS, I left and adopted two children, one of whom has cystic fibrosis and was treated at GOSH. His care was exemplary – it was like coming home! After I had left and had adopted my first child I was project manager, helping to set up the Ipswich branch of East Anglia Children’s Hospice.

Supporting the next generation “I’m pleased to say that both my children have participated in research projects during their time at GOSH, a place that is always striving for excellence and the very best quality of care for the children and families it serves.

Though my own nursing days are over I continue to support the next generation. Great Ormond Street Hospital Children’s Charity’s (GOSH Charity) support is so important to the work being carried out in the hospital and at UCL Great Ormond Street Institute of Child Health. I am repeatedly amazed at the clinical developments and technological advancements that are happening. In addition, I am particularly interested in the nurture of children through difficult times, the provision of beautiful surroundings and the skills of specialist therapists.

“I hope that this incredible community will always be there, which is why I have chosen to leave a legacy in my Will. My love and prayers go to the children and families and all the staff at GOSH. GOSH will always have a place in my heart.”

Cathie in 1974 as a second year student at the School of Nursing

Cathie and her mum, who was also once a nurse at GOSH Cathie and her mum, who had been a GOSH nurse WRITE YOUR WILL FOR FREEalso ONLINE

Great Ormond Street Hospital Children’s Charity has partnered with Beyond Life, the online will writing experts, to offer a quick and easy will-writing service for anyone living in England and Wales. Each will is reviewed by will experts and can be updated at any time.

To find out more go to www.beyond.life/ gosh and use the code FREEWILL19 at the end of the process to get your will for free.

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SPIRITUAL CARE FOR ALL Pioneer explores the past, present and future of spiritual care at GOSH, discovers what this service means to patients and families and how charity funding played a role in its expansion.

Spiritual care and spiritual spaces have long played an important role in life at Great Ormond Street Hospital (GOSH). While the hospital operated from converted 18th-century townhouses for its first 20 years, by 1875 fundraising had allowed for a new, fit-for-purpose hospital to be constructed, with space for a chapel. This built the foundation of spiritual care services within the hospital, which has grown to become a vital part of GOSH today. Not only has the chapel survived two world wars, but its Spiritual Care team has significantly grown, fully funded by Great Ormond Street Hospital Children’s Charity (GOSH Charity).

The GOSH chapel of today When GOSH Charity’s Wishing Well appeal ran between 1987 – 1989, money raised went towards a major rebuild of the hospital, which would involve demolishing the 1875 building. If the chapel was left in its original position, it would obstruct the front-line medical units in the new Variety Club Building. So, when the rest of the building was demolished around it in 1990, the chapel was boxed up and moved. It reopened in 1994 with a re-dedication service, broadcast on Channel 4 and featured on Blue Peter, using time-lapse photography to show the building process.

The growth of spiritual care Today, the hospital’s Spiritual Care team has the equivalent of four full-time chaplains, providing care for staff, patients and families at GOSH, whether they follow a faith or not. Unless families need a ritual or service specific to a certain denomination, the chaplaincy team considers who can build the best rapport with a family when assigning cases, rather than basing it on religion. The team also reaches out to spiritual contacts in the local community if help is needed with a complex case that isn’t covered by the team’s expertise.

St Christopher’s Chapel at GOSH – a sanctuary for patients, families and staff

Charity funding has also allowed GOSH’s spiritual spaces to expand. Two new faith rooms were unveiled

in 2018, thanks to a generous contribution from leading UK Muslim charity, the Al Khair Foundation. One is a multi-faith quiet room and the other is a Muslim prayer room. People at the hospital also benefit from a Jewish Shabbat room, funded by a Jewish charity. They bring in Kosher snacks and prepare the room for the Shabbat every week.

“We’re here to provide pastoral care and spiritual care for everyone and anyone who walks through the hospital doors.”

Senior Chaplain Jim Linthicum [pictured next page] who manages GOSH’s Spiritual Care team, explains why spiritual spaces are important. “You’re surrounded by so much going on in the hospital that the spiritual spaces are a place where you can just release all that stress, whether you have a faith or not,” he says.

For everyone and anyone Although the team’s daily responsibilities involve ward visits and maintaining the spiritual spaces, an average day never has a set agenda. For example, the team covers Intensive Care Units (ICUs), where things can change from hour to hour, so a chaplain’s role is to be with the family and medical teams to provide support at difficult times.

“We’re here to provide pastoral care and spiritual care for everyone and anyone who walks through the hospital doors,” Senior Muslim Chaplain Romana Kazmi says. “Families come to us to find a place where they feel safe and can open up.”

Staff can also go through difficult times in the hospital, especially if they’re working long shifts. In these times, staff often come to Spiritual Services for one-to-one support with a chaplain, organise a memorial service, or experience silence in the chapel.

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service in the chapel and she said, ‘all I value is how you supported me on that particular day, how you called me by my name. Holding my hand, lighting a candle – that was important to me.’”

All they need is love “I think the charity does amazing work, because patients and families tell us, ‘without the support of the Spiritual Care team, we would have been lost’.

“Every day, two or three families come to see their child’s name in our memorial book. Even if they passed away at GOSH 20 years ago, this is their child’s home. When these parents are with their child here for six months or a year, their family is GOSH and their community is GOSH. If the charity didn’t support all these extra services, the mental wellbeing of these parents and the holistic care would be so different.

“There was a lovely consultant here a long time ago, and he used to say, ‘All they need is love’. I remember that every day. It’s not all about treatment – along that journey they need everything. Just to be with that family and be a part of the journey is a reward.”

COLETTE LENNON ROMAN CATHOLIC CHAPLAIN

Imam Qasim, Founder of the Al Khair Foundation, opening the Muslim prayer room in 2018

24/7 support As many families arrive at GOSH from other parts of the UK and from across the world, the Chaplaincy team works with the charity to organise events for all major religious festivals. “We try to give them the joy of the festival, so they don’t feel isolated,” Romana explains. “Again, this wouldn’t be possible without the charity. Every year we do the Eid party [although it was postponed this year due to the COVID-19 crisis] and it’s lovely to see everyone come together. We honour festivals for all the children, either at Christmas or Eid or another festival.”

To find out more about Spiritual Services at GOSH, visit gosh.nhs.uk/chaplaincy.

JIM LINTHICUM SENIOR ANGLICAN CHAPLAIN After working at the hospital for almost 14 years, Jim tells us how his team supports people at GOSH.

Everybody’s spiritual He tells us: “Not everybody’s religious but everybody’s spiritual. Spiritual means hope, meaning and belief.”

The team and the space provided for spiritual care has significantly expanded over the years. Jim elaborates: “When I came here, there would be days when we had no chaplains in because we were so small. Now we 30 PIONEER

have the equivalent of four chaplains, full-time. One of the biggest breakthroughs is having a Senior Muslim Chaplain, Romana.”

Explaining the team’s importance, Jim says: “The school at GOSH was running an activity where children drew pictures of the psychology and social teams who supported them. One little girl drew me and was supposed to add a speech bubble showing what I would say. But she said, ‘normally, you just listen to me so if I put anybody’s words there it would be mine’. I think that idea of presence and availability is key to what we do.”

Looking forward “I think the future of spiritual care is going from strength to strength, looking at mixed methods for providing spiritual care and, ultimately, turning it into a training centre – that’s my dream… It would expand the team and build GOSH’s reputation.”

ROMANA KAZMI SENIOR MUSLIM CHAPLAIN Romana (pictured above right) began her journey at GOSH 11 years ago as a Chaplaincy volunteer. After two years as a volunteer, she was appointed as a Muslim Chaplain and recently became the first Senior Muslim Chaplain at GOSH.

Although the team’s daily responsibilities involve ward visits and maintaining the spiritual spaces, Romana says an average day doesn’t have a set agenda. “I cover three Intensive Care Units (ICUs), where things can change day to day, hour to hour, so I will be with the family and medical teams to look after those difficult cases,” she says.

The chapel and prayer room are open 24 hours a day, thanks to the team’s year-round, on-call service.

Romana explains: “I’m sometimes here until 2am or 3am. Imagine when a family is here and they’re losing their child. They need their ritual and prayers. In Islamic faith, culturally women will be more open with another woman. So, I can be here, hug her and let her cry.”

Caring for families “In end-of-life care for Muslim families, it’s important for them to see the presence of their faith. So, I’ll be part of difficult conversations with families, help give them meaning to those difficult decisions,” Romana explains.

She is also part of the organ donation committee, giving Muslim families a better understanding of the process.

Romana has cared for many families, with or without nominated faiths, at the end of life. She describes how important the spiritual moments were for one mother when her daughter passed away: “We held a memorial

Colette started at GOSH on 10 December 2019. Her background in nursing and Master’s degree in Pastoral Theology inspired her to go into Chaplaincy in 2009 and she’s been working as a chaplain ever since.

“My ward visits often lead me to having other encounters with staff and family members who may be distressed,” she says. “Although I’m the Roman Catholic Chaplain, I deal with all faiths and none. Each day brings new challenges and we never know what lies ahead. During the day we may have emergencies or requests for prayer from a ward before a child goes for surgery or more intense treatments. It’s a real privilege to be able to ‘journey’ with patients and their families in their time of crisis and offer support. “

“Support from GOSH Charity means a great deal to the team, recognising the need for spiritual care and its importance to people.”

A day in the life of Colette • Check for referrals • Get updates from the other team members about patients we’ve been looking after • Huddle with the team to discuss our plans for the day ahead and share information • Morning prayers at 10:30am • Print off a list of Roman Catholic patients from the Electronic Patient Record system to visit • Visit the wards • Lunch with the team • Back to the wards!

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with Public Health England led to the UK government introducing the pneumococcal vaccine with three rather than four doses in 2006. Since then, the incidences of the disease in children have dropped by 98%, which saves children from coming to hospital and, ultimately, helps the NHS.”

NOW The vaccination programme was a success, yet Professor Goldblatt and his team continued to work on whether the number of doses of this vaccine could be reduced even further. “Two years ago, we published a paper in The Lancet following a trial we ran in the UK to see if we could go to a single dose in infants with a booster in the second year of life – what we call One Plus One,” he says. “Again, we were looking at how to integrate it into the UK vaccine schedule and reduce the cost; with the birth rate of about 750,000 babies in the UK each year, you can see the benefits from an economic point of view if we give two rather than three doses of an expensive vaccine. But it’s also about making space for new vaccines in the infant schedule.”

THE EVOLUTION OF VACCINATIONS It’s 25 years since GOSH Consultant Paediatric Immunologist Professor David Goldblatt began contributing to a worldwide, life-saving vaccination programme. Pioneer talks to him about how UK and international research collaboration continues to be a necessity for developing vaccinations.

Millions of children’s lives across the world have been saved in the last two decades, thanks to a vaccination programme protecting them against pneumococcal disease [which can cause different infections including meningitis and pneumonia].

Professor David Goldblatt, Consultant Paediatric Immunologist at Great Ormond Street Hospital (GOSH), Professor of Vaccinology and Immunology and Head of the Immunobiology Unit at the University College London (UCL), has contributed to the shaping and refinement of that vaccination programme globally. Working initially with Public Health England, Professor Goldblatt and his team have supported the World Health Organisation and other global health authorities to make similar vaccines effective

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and affordable for children in developing countries.

Professor Goldblatt explains how collaboration with both UK and international colleagues continues to help improve developments in child health.

THEN “Prior to 2000 there was no pneumococcal vaccine licenced or effective for children. Then, when it was licenced, we designed a trial to see how we could fit it into the UK infant immunisation schedule, because the number of doses you give, and the way they’re spaced out, is very important for whether the vaccine would work,” Professor Goldblatt explains. “We already had many vaccines in the schedule, and wanted to reduce the dosage, and so a pivotal trial we performed

In January 2020 the UK vaccine schedule UK changed to One Plus One. “That’s quite a short time from publishing something academically to it becoming policy,” Professor Goldblatt explains, “but it was the collaboration with Public Health England that was the real strength for this type of work, which has policy implications.” He points out that while the work was partly funded by the UK government, it was also partly funded by the Bill and Melinda Gates Foundation.

“They’re interested in it as a worldwide strategy and fund many vaccine programmes around the world in developing countries. Now I’m involved in studies in Africa, India and other places with the same idea.”

“The world of science is so interconnected… that it’s very difficult to operate in isolation, so collaborations are fundamental.”

Kenya and Gambia on these types of problems. On the collaboration side, the researchers couldn’t do what they do without local, national and international partnerships. The world of science is so interconnected, and the techniques being used are so sophisticated, that it’s very difficult to operate in isolation, so collaborations are fundamental.”

CHARITY COLLABORATION Funding from Great Ormond Street Hospital Children’s Charity also allows the partnership between GOSH, the ICH and the wider UCL to build on their research and clinical trial work.

“The funding from the charity for research at GOSH is absolutely critical because we have a unique group of patients, many with rare diseases,” Professor Goldblatt, who is also the Director of Research and Development at GOSH, explains. “And, in order to help the children, we need to have the infrastructure here to respond very quickly to new ideas or research opportunities.

The charity has been fundamental in supporting our research infrastructure, having a clinical research facility in place, having data managers and all the individuals who can facilitate the research. It’s often possible to get funding externally but it can be limited and structured into what it provides, whereas funding from the charity can fund across a broad platform for the research infrastructure.”

WORLD-WIDE COLLABORATION GOSH and its research partner, the UCL Great Ormond Street Institute of Child Health, are home to a large number of child health paediatrics, a team that publishes more papers on paediatric health (more than 1,000 papers a year) than anywhere else in Europe, says Professor Goldblatt. In fact, the partnership between the two in part creates the opportunities to improve children’s health across the world. But, he adds, tackling global health issues also means international collaboration remains key.

“We’re currently working with international consortiums on Group A Streptococcus vaccine, Group B Streptococcus vaccine [to prevent many disorders from strep throat to bloodstream disorders], and we’re supporting the Gates Foundation, and others, on typhoid and Klebsiella [a bacteria that can cause lifethreatening infections] vaccines,” he says. “When you’re working on diseases of poverty or neglected diseases, international collaboration is critical. For example, I’m working with colleagues in countries such as Malawi,

The pneumococcal vaccine reached more than 183 million children worldwide by the end of 2018, helping to prevent infections including meningitis and pneumonia.* The World Health Organisation recommends all countries introduce pneumococcal vaccines in their immunisation programmes.* * Source: gavi.org/types-support/vaccine-support/pneumococcal

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“I often talked to the nurses… they’re incredible souls giving their all to support families.”

A loving legacy for Frank

and make you feel as comfortable as possible. GOSH nursing staff go through a lot, it’s admirable how they maintain their cool while being there for us emotionally.

I often talked to the nurses, particularly when we knew our son would pass away. They’re incredible souls giving their all to support families, offering to make tea or providing their shoulder to lean on when it was unbearably tough. We think back to the playrooms each floor has, which bring a bit of everyday normality into those dark days of worry. The Play specialists, volunteers, the physiotherapy team, it all adds a little buzz and relieves the loneliness. Without these services and support, many parents wouldn’t be able to be as strong for their children.

Two-year-old Frank sadly passed away in May 2019 from a rare form of cancer. His mum Maris shares her story, about her son’s time at GOSH and the legacy she’s building for him.

While we were at GOSH, I couldn’t imagine leaving Frank’s side. It was great I could stay with him 24/7.

I also know Great Ormond Street Hospital Children’s Charity (GOSH Charity) offers accommodation to families too. All of these support services are available because of funds from the charity, and it means the world to us to have them.

A legacy for our ‘little monkey’ Frank was born in January 2017, weighing a strong 9lbs. He was hardly ever ill but, just before he turned two, he came down with a cold as we were getting ready to go on holiday to celebrate his birthday. He seemed to get better but, by mid-January, he still had a lingering temperature and a strange, one-off vomiting episode.

By the time 21 January came around, Frank was well enough to fly, but things escalated on the plane.

Frank started breathing heavily and I could feel his heart rate was very high. When we landed, we went straight to hospital for blood tests. Within 24 hours, we were told our son had T-cell acute lymphoblastic leukaemia (T-ALL). It was a shock. I felt like my legs were taken out from under me, our world turned upside down, but I knew I had to stay strong for my son.

Rushed to GOSH As soon as we were told Frank was so unwell, our priority was getting back home so he could start treatment. On landing, we were rushed to Great Ormond Street Hospital (GOSH). Two days after Frank’s birthday, he had his first dose of chemotherapy at GOSH. Because the type of leukaemia he had was so rare and aggressive, the available drugs were designed to fight more common types of cancer. If he responded well, then great, but the chance it’d be effective was slim from the start. We could only hope for the best.

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Staying strong for Frank After four weeks, Frank wasn’t responding to treatment. We were in and out of hospital for months. My husband and I hoped Frank didn’t have the nasty type of the disease, but we also knew we had to prepare ourselves.

Even when the leukaemia spread to Frank’s brain, we still hoped for a miracle. But there becomes a point when you can no longer treat a child if it means they’ll have no quality of life. It’s the most difficult thing in the world to let go, but you also don’t want them to suffer.

Towards the end, we were waiting for Frank to go.

We didn’t want to see him suffer anymore. Time stopped for us. Every moment with Frank was precious. We talked to him, played his favourite cartoons and calming music, and just breathed with him together. We tried to memorise everything we did with him during his short but very happy life and stay strong for him until the end.

Our GOSH family GOSH means a lot to us. I feel privileged for Frank to have had the opportunity to be cared for there, with the best specialists who can access the best medicine and find the best treatment for your child.

No matter how bad things got, GOSH staff always gave us hope. It’s incredibly important that staff around you offer personal support, know your story

We call Frank our little monkey. He was born just at the end of the Year of the Monkey and his favourite teddy was a monkey. He was inquisitive, smart, and a very energetic and bubbly boy. He was known and is remembered as always being smiley. Even on bad days, if he could, Frank would smile. He’s our hero.

Frank was our only child and from being the happiest and caring parents, we now have to navigate the unexpected world of grief. In memory of our most precious treasure I want to do something for Frank and build a legacy for him. I’m interested in understanding the type of cancer he had better and to be there to help others who may be in an unfortunate situation in the future.

It’s difficult to get funding for rare cancers because there are so few cases. The last patient to have Frank’s specific type of T-ALL at GOSH was five years ago – that’s how rare it is.

I set up a fundraising page a year from when he was diagnosed (a day before his second birthday) to kickstart our fundraising and raise awareness. I’ve also established charity fundraising in our workplace, and I’m pleased that for 2020 (and hopefully beyond) this will be in support of GOSH Charity. Everybody has the power to fundraise in our society, every little bit helps.

If you would like to make a donation to GOSH Charity in memory of a loved one, please visit gosh.org/donate/donate-memory

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Great Ormond Street Hospital Children’s Charity 40 Bernard Street London WC1N 1LE 020 3841 3131 gosh.org/pioneer

Thank you to all the patients, families and staff who took part in creating this edition of Pioneer.

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Great Ormond Street Hospital Children’s Charity. Registered charity no. 1160024.

NURSING NOW AND THEN