Summer Pioneer Magazine 2021

SUMMER 2021 Great Ormond Street Hospital Children’s Charity

PLAY’S POSITIVE IMPACT Celebrating the work of GOSH’s amazing Play team

BUILDING THE FUTURE The next steps for GOSH and the children it cares for

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

06 I HAVE… NEUROMYELITIS OPTICA Rue talks about her three years at GOSH and her move to adult care.

08 GOSH BREAKTHROUGH FOR GENE THERAPY TREATMENT A pioneering gene therapy research trial at GOSH is offering a cure to children born without an immune system.

12 CHANGING LIVES WITH TRANSPLANTS 13-year-old James received a heart transplant during the COVID-19 pandemic. Mum Catherine talks to Pioneer about the build-up to his life-saving surgery.

16 COVER STORY THE SERIOUS BUSINESS OF PLAY Pioneer chats to GOSH Head of Play Services Laura Walsh about why play is a crucial part of the hospital’s holistic approach to care.

22 A HELPING HAND Pioneer explores how support services for children, families and staff at GOSH can make a worrying time a little bit easier to cope with.

26 THE PIONEER INTERVIEWS Chairs of three of the staff Forums at GOSH speak to Pioneer about how charity support has helped their members’ wellbeing during the pandemic.

30 WHY I SUPPORT THE CHARITY: SUE PATRICK Long-time supporter Sue Patrick tells Pioneer how her experiences with GOSH moved her to leave a legacy in her will.

32 GLOBAL CO-OPERATION LEADS TO NEW TREATMENT Pioneer discovers how a global relationship is advancing clinical trial work into a rare condition.

34 PARENT’S PERSPECTIVE Diagnosed with Burkitt’s nonHodgkin lymphoma, Jake spent most of 2020 receiving treatment at GOSH. Mum Danielle shares his story.

20 BUILDING THE FUTURE As the new Sight and Sound Centre opens this summer, Pioneer looks at how new facilities are improving the futures of GOSH patients.

All photographs included in this edition were either taken before the Coronavirus crisis, or were taken adhering to all government guidelines.

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WELCOME Welcome to the Summer 2021 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).

As we reflect on the challenges we’ve faced over the last year, here at Great Ormond Street Hospital Children’s Charity (GOSH Charity) we want to thank everyone who has supported us during this difficult time. Because of your generosity, GOSH Charity has been able to continue supporting GOSH through the COVID-19 pandemic, as the hospital continued its expert care of the children and their families.

On page 22 you’ll learn more about the charity funded family support services – large and small – that GOSH offers, as well as finding out how we’ve been able to support GOSH staff with mental health and wellbeing services as they navigated working through the pandemic.

We shine a light on the positive outcomes this support has brought not just to staff, but to the children and their families as result. And, on page 26, chairs of GOSH’s staff forums talk about how charity funding has been crucial in helping them support their members over the last year.

We’re also pleased to bring you news on an incredible heart transplant technique now available for children, which started at GOSH in the last year, from page 12.

This issue also explores what the future holds for GOSH and unveils exciting state-of-the-art building developments. As the hospital gets ready to open the Sight and Sound Centre, supported by Premier Inn, we find out, from page 20 , how it will benefit both patients and GOSH staff. You’ll also discover how GOSH’s Zayed Centre for Research into Rare Disease in Children, which opened in October 2019, has played a pivotal role in the fight against COVID-19.

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 CEO Great Ormond Street Hospital Children’s Charity

On the front cover: ‘Kayla shows her thanks to the NHS

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IN REVIEW

STORIES FROM AROUND THE HOSPITAL AND CHARITY 2 EPILEPSY RESEARCH

APPEAL TOPS TARGET

Our Epilepsy Research Appeal, which launched in February to fund research into hard-totreat epilepsy, raised an amazing £308,000, surpassing the appeal’s target of £275,000.

CHRISTMAS STOCKING

1 APPEAL EXCEEDS £1 MILLION Our 2020 Home for Christmas Stocking Appeal raised an incredible £1.2 million thanks to the generosity of our supporters.

Great Ormond Street Hospital Children’s Charity’s (GOSH Charity) annual Christmas appeal has been running for more than 20 years and is a wonderful opportunity for supporters to send a message of thanks and well wishes to patients, families and staff at the hospital over the festive period. This was more important than ever last year, and a fantastic way to thank NHS staff at Great Ormond Street Hospital (GOSH) for going above and beyond in 2020.

The 2020 appeal featured GOSH patient Hudson, who had spent Christmas 2016 in hospital for lifechanging surgery to treat his oesophageal atresia (a condition where the oesophagus doesn’t form properly). Hudson’s mum, Nicola, remembers reading the Christmas stocking messages supporters sent to GOSH. “I was moved at how highly parents spoke of their time at GOSH but also how amazing it was for them to be home with their child and enjoying Christmas. It boosted my hopes of being home soon with Hudson,” she says.

The message-filled stockings were hung as decorations across the hospital wards and projected on screens throughout the hospital and at patients’ bedsides.

This fantastic response to the appeal will make a huge difference to the lives of seriously ill children and will help to fund pioneering research, state-ofthe-art medical equipment, vital refurbishments to the hospital and patient and family support services, including the Play team. Thank you again for your continued support, we couldn’t do it without you.

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The appeal featured the story of GOSH patient Charlie, who had brain surgery in 2018 to treat his epilepsy. Before his brain surgery, he was having between 10 and 17 seizures a day. But before doctors could operate, they had to locate the part of Charlie’s brain that was causing his epilepsy. “We have to induce a seizure and measure the brain waves to pinpoint the part of the brain where the seizure starts. Then we operate to remove it,” Dr Chari, Clinical Research Fellow & Surgical Scientist at GOSH, explains. “This can be distressing for children – and risky. It involves several days in hospital and seizures have to be induced.”

Dr Chari hopes his epilepsy research will allow children to benefit from a gentler, safer treatment, without having to induce seizures; a world first in epilepsy treatment. This means quicker diagnosis and earlier treatment, and less impact on young developing brains, vital new understanding of why seizures happen and the potential to change children’s lives.

The money raised will help many more children like Charlie in the future.

Thank you to our wonderful supporters who donated to this appeal.

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3 THANK YOU FOR SUPPORTING OUR FAMILIES APPEAL

In recognition of the extraordinary and difficult circumstances the pandemic created for GOSH families, GOSH Charity launched its Families Appeal this February. Thanks to your generous support, the appeal raised more than £196,000.

The funds will be used to provide vital practical and emotional support children and their families need. These include services like the hospital’s Play team, who help lift the children’s spirits and make sense of their treatment; parent accommodation to keep families close together; and the hospital’s Social Work Service and multifaith chaplaincy teams, who provide family advice during the most challenging times.

Thanks to your generosity, children like Jake (pictured), who was treated for Burkitt’s nonHodgkin lymphoma in 2020, were able to benefit from these vital services. “With all the other things stopping and closing, the nursing team and Play team became more important to everyone,” Jake’s mum Danielle says. “The staff were there for us on our down days to listen, to comfort and give advice. I’ll forever be grateful to them all.”

Thank you so much for your continued support.

4 WEEKLY LOTTO LAUNCH We’re excited to have launched GOSH Charity’s firstever weekly lottery! The Great Big Lottery is a fun way to support the incredible work of the hospital and be in with a chance to win great cash prizes.

There are 12 guaranteed prizes to be won every week, with a top prize of £1,000! Visit lottery.gosh.org to play and you could be one of our lucky winners.

5 NEW YEAR RAFFLE SUCCESS A huge thank you to everyone who took part in our New Year Raffle this year. We had a fantastic response and raised more than £306,000 for the hospital. The money raised will help ensure we continue to provide extraordinary care and services to support patients and families during a difficult time. So, from everyone here – thank you!

To follow on from that success, our yearly Autumn Raffle will be open in September, with a top prize of £5,000! Keep an eye out for more information on this by visiting raffleentry.org. uk/gosh in the second week of September.

THIS TIME IN GOSH’S HISTORY

1951

This year marks the 70th birthday of the Children’s Hospital School at GOSH, which will be celebrating the occasion with a number of special events. The School’s personalised curriculum, although based on the National Curriculum, is as innovative and creative as possible to engage and motivate the children in hospital.

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Since coming to GOSH, my mindset has changed. They really supported me and showed me how to handle my condition, even though it’s so rare.

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I HAVE...

NEUROMYELITIS OPTICA Rue, 19, has neuromyelitis optica, a rare autoimmune condition that affects one in five million people. She spent three years coming to GOSH and has since moved on to adult care.

I started having symptoms for neuromyelitis optica (NMO) when I was 11, such as severe vomiting that just wouldn’t stop. These symptoms continued for about four years. When I was 15, I started getting migraines at the back of my head and losing my eyesight. It was cloudy and kind of grey for a long time and this would switch between both eyes.

It was really stressful.

Over the years, I kept returning to the doctors, but would leave without an answer for my symptoms. Eventually I was referred to Great Ormond Street Hospital (GOSH), where I was diagnosed with NMO, an immune system disorder that affects the optic nerve. They caught it at just the right time because I was losing my eyesight. If I’d left it just two or three weeks later, it’s likely I would have gone completely blind.

RESEARCH AT GOSH It’s also thanks to GOSH that I took part in a clinical trial. Following an unsuccessful plasma exchange treatment to save my vision, I started to get impatient and frustrated. My consultant suggested I try a new clinical trial, and I thought, what do I have to lose?

I started the trial with GOSH and have been on it for two years. Every month, I have one injection of medication that I’ve been trained to do myself.

Although my vision hasn’t improved, the trial has really helped to ensure my symptoms don’t get worse.

Without GOSH, I wouldn’t have had this opportunity.

TRANSITIONING TO ADULT SERVICES Now I’m over 18, I’m seen at the University College London Hospital (UCLH), next door to GOSH. I go every 12 weeks for a check-up as part of the clinical trial.

Before I left GOSH, I also got the chance to say goodbye. The staff were really nice and told me to get in touch if I ever needed anything.

And I still keep in contact with Katie.

When I was first diagnosed, I thought it was the end of the world. I didn’t think anyone would understand my situation. But my nurse at GOSH, Katie, was really supportive. And, after a long time of not understanding what was going on, I felt like I was going to be okay.

COMING TO GOSH

RUE NOW

After my diagnosis, I started coming to GOSH for check-ups twice a month. During this time, I was able to stay in nearby accommodation funded by Great Ormond Street Hospital Children’s Charity (GOSH Charity). I loved coming to GOSH because it was so specialised, with all the equipment, machines and advice for treating a rare condition like NMO. And the level of care I was given was just amazing. Whenever I felt down and upset, the staff were always there for me. And they weren’t just focused on my health; they took the time to find out about me and build my confidence back up.

Living with NMO can be difficult at times because I get severe fatigue. And people don’t always understand how serious my condition is, especially if I fall ill. But since coming to GOSH, my mindset has changed. They really supported me and showed me how to handle my condition, even though it’s so rare.

I opened up, in particular, to Paula, the Eye Clinic Liaison Officer, and she helped me to learn everyday life skills like cooking and cleaning. Paula has sight loss and so was an inspiration to me, I don’t know where I’d be now without her help.

People supporting GOSH Charity is so important for funding research into cures for rare conditions or to prevent them from getting worse. Without GOSH Charity and the clinical trials I wouldn’t be where I am now.

I’m at university studying advertising and marketing. It’s an opportunity I’m so grateful for, as I didn’t think I’d be able to go because of my health.

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GOSH BREAKTHROUGH FOR GENE THERAPY TREATMENT A pioneering gene therapy clinical trial at GOSH is offering a cure to children born without an immune system.

Great Ormond Street Hospital (GOSH) has been at the forefront of gene therapy science for decades.

GOSH, together with the UCL Great Ormond Street Institute of Child Health (GOS ICH), has been responsible for more innovative gene therapy trials than any other centre worldwide, thanks to its unique patient population and the partnership with the academic environment of the ICH. Now, research has shown that a new type of gene therapy can cure severe combined immunodeficiency, a condition that leaves children without an immune system.

Severe combined immunodeficiency due to adenosine deaminase deficiency, also known as ADA-SCID, is a rare, life-threatening disease that prevents children from living a normal life.

It’s caused by mutations in the gene that creates the enzyme adenosine deaminase, which is essential to a functioning immune system.

Children with this disease have no immune system and day-to-day activities, such as going to school or playing with friends, could lead to an infection that would be fatal. Exact numbers of cases are hard to determine as, sadly, children may die without treatment and never receive a diagnosis. Recently, new-born screening for SCID has been implemented in some countries to help diagnose the condition early in life.

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THE ADVANCEMENT OF GENE THERAPY TECHNOLOGY AT GOSH In earlier trials of gene therapy for other similar diseases, serious side effects including leukaemia had been seen in some patients. Now, gene therapy technology has advanced significantly and offers a safe and effective treatment option for patients.

Researchers at both GOSH and University of California, Los Angeles (UCLA), treated 50 children with gene therapy that uses a child’s own stem cells alongside a harmless form of a lentivirus. This work was carried out with Professor Bobby Gaspar, who has pioneered gene therapy research at GOSH for the last 20 years.

The current available treatment for ADA-SCID involves once or twice weekly injections of the ADA enzyme until a matched bone marrow donor – usually a close family member – can be found. If a matched bone marrow donor is not available, children require life-long ADA injections along with preventative medicines, such as antibiotics, antifungal medications and monthly infusions of immunoglobulin that contains antibodies to help fight infections.

Gene therapy is a welcome alternative for ADA-SCID as it is a one-time procedure that should provide life-long results.

HOW IT WORKS The gene therapy approach involves first removing some of the patient’s blood-forming stem cells, which have the potential to create all types of blood and immune cells.

Next, a modified virus – called a viral vector – is used to deliver a new copy of the ADA gene into the DNA of the patient’s cells. These corrected stem cells are then returned to patients where they go on to produce a continual supply of healthy immune cells capable of fighting infection.

The international team for this gene therapy research, led by Dr Claire Booth, Mahboubian Associate Professor in Gene Therapy, UCL GOS Institute of Child Health, and Professor Donald Kohn at UCLA, began collaborating with Professor Bobby Gaspar and Professor Adrian Thrasher of UCL GOS ICH, to develop a new viral vector using a different kind of virus, called a lentivirus.

Viruses of this kind can enter non-dividing cells’ nuclei and make gene therapies more effective and safer.

Patients began receiving the new gene therapy at GOSH in 2012 and in the following year at the partner site in the USA. Although this research project monitored the children for up to three years, they will have life-long follow up with doctors as part of their care.

“In the future, this treatment could be standard for ADA-SCID, and potentially many other genetic conditions, removing the need to find a matched-donor for bone marrow transplant and the toxic side effects often associated with that treatment.”

EXTRAORDINARY RESULTS Of the 50 children treated with the new gene therapy at GOSH, UCLA Mattel Children’s Hospital and the National Institutes of Health (NIH) between 2012 and 2017, 48 appear to be cured of their disease.

Now, two to three years after the gene therapy, these 48 children experienced no serious side effects and had no need to return to their previous treatments. In the two cases where the treatment wasn’t curative, both children experienced no serious side effects and were able to return to their previous therapies.

Ten of the children in the study were treated using a frozen preparation of corrected stem cells.

These children experienced similar outcomes to the children treated with cells that were never frozen. This proof of concept would allow children and their families the freedom to have their stem cells collected locally, have them transported and processed at a manufacturing facility elsewhere, and then shipped back to them, removing the need to travel long distances to specialist centres.

Dr Claire Booth, says: “In the future, this treatment could be standard for ADA-SCID, and potentially many other genetic conditions, removing the need to find a matched-donor for bone marrow transplant and the toxic side effects often associated with that treatment. We need and want clinical guidelines [that make bone marrow transplant the standardof-care] to change so we can start offering this cure to children and provide it as a first-choice treatment – this research could set those wheels in motion.”

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THE FUTURE OF GENE THERAPY Professor Adrian Thrasher, GOSH Professor of Paediatric Immunology and a senior author of the research study, explains how this is a significant breakthrough for gene therapy. “We started gene therapy at GOSH around 20 years ago and now have refined the process to offer a realistic cure for children born with this debilitating condition. More than 200 patients with various genetic conditions across the world have now been treated with this type of gene therapy – this is another very significant breakthrough.”

GOSH’s Zayed Centre for Research into Rare Diseases in Children is at the forefront of the next stage of this research. The Zayed Centre for Research – a partnership between GOSH, UCL and Great Ormond Street Hospital Children’s Charity, and made possible thanks to a transformative £60 million gift from Her Highness Sheikha Fatima bint Mubarak, wife of the late Sheikh Zayed bin Sultan Al Nahyan, Founder of the United Arab Emirates – is being used for its manufacturing expertise. The next stage, testing out the frozen treatment in a GOSH-led clinical trial, is already underway.

It’s hoped the positive results from the lentiviral vector treatment can lead it to becoming a first line treatment for this devastating disease.

All research at GOSH is underpinned by the NIHR GOSH Biomedical Research Centre

SARAH’S STORY Sarah was only 10 days old when her mum, Maria, became concerned about her health.

She wasn’t putting on weight, kept being sick and had nappy rash that refused to heal.

After consulting her midwife, Maria took Sarah back to her local hospital in South Yorkshire where blood tests revealed very low levels of lymphocytes and neutrophils in her blood.

These are essential white blood cells that play a crucial part in fighting infections. Doctors were even more concerned when an X-ray showed an infection in Sarah’s right lung.

She was started on antibiotics to fight the infection before being sent to Sheffield Children’s Hospital for further tests.

“I was really worried Sarah had leukaemia because I’d been researching what the results of the X-ray and blood tests could mean,” Maria says. “The doctors told me it wasn’t leukaemia, but they couldn’t tell me what she had. We just had to get her more and more tests to try and get an answer.”

Sarah was taken to theatre to have a central line inserted and to check if the infection she had was a type of pneumonia. When more detailed blood test results came back, the picture started to become clear.

“I remember the exact time I saw the paper that had the blood test results on and the diagnosis. I saw it was Severe Combined Immunodeficiency (SCID) and was incredibly upset. We were then referred to the children’s hospital in Newcastle.”

SCID is a group of rare, inherited disorders that cause major abnormalities of the immune system. The immune system abnormalities in SCID lead to greatly increased risks of infection and other complications that are lifethreatening. There are many different types of SCID, each with different genetic causes.

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“At hospital, I wasn’t allowed to kiss my daughter or sleep next to her as everything had to be highly sterilised to keep her safe. It was horrible to not be able to do normal things.”

Two weeks into her admission in Newcastle, doctors identified that Sarah’s SCID was caused by an adenosine deaminase deficiency (ADA-SCID) and she was started on injections (PEG-ADA) to replace the enzyme she lacked. It was at this point Maria was put in contact with GOSH and travelled with Sarah to meet the clinical team who told her about the gene therapy trial. “It was such a relief to hear there was another option,” Maria explains.

When Sarah weighed enough to take part in the trial she was admitted to GOSH and had cells harvested that would be used for the treatment. Three days later she began receiving the gene therapy.

Sarah stayed at GOSH for several weeks until her blood tests showed her immune system was responding to the treatment. She continued to have immunoglobulin injections for a while after she returned home, which Maria was taught how to administer.

Six months after the treatment, Maria could already see it was making a huge difference to Sarah’s life. They still come to GOSH every year for a check-up but doctors are very happy with how she’s doing.

Sarah’s treatment had a huge impact on the whole family, and also inspired Maria to train to become a nurse.

“She’s doing so well now and can do everything a normal child her age would do.”

“The nursing staff were so incredibly supportive of me and Sarah, they were always there for us and always happy to help,” she says. “I now know how it feels to have your child as a patient and to be so sick, and I want to use my experience to help others in a similar position.”

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CHANGING LIVES WITH TRANSPLANTS GOSH’s Cardiothoracic Transplant Unit is currently one of the largest paediatric transplant centres in Europe. Pioneer talks to Catherine, whose son James, now 13, received his heart transplant during the COVID-19 pandemic.

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James was rushed to A&E in our home town of Brighton in early 2019 when we discovered his pulse rate was extremely fast.

From there we were transferred to the Evelina London Children’s Hospital, where we were told there’s a natural pacemaker in the heart, but doctors had realised James had an extra one that had developed, which was making his heart race twice as fast.

In early March that year, James had a procedure to burn away the extra pacemaker. That seemed to be successful, so James returned home. From then, he was monitored but his heart rate was still much higher than it should have been. However, throughout all of this James seemed okay; he didn’t have any symptoms at all.

James has ADHD and is normally always on the go but gradually, from that July, he started becoming more lethargic, going off his food, vomiting and complaining of pains in his leg. We took him to A&E again, which is when we were told there was fluid building up around his heart.

A few weeks later, we received the diagnosis of dilated cardiomyopathy – a disease of your heart muscle where it becomes stretched and thin, unable to pump blood around the body efficiently – and were told that James was in heart failure.

We had to decide on the best course of treatment for James; he could either have a Left Ventricular Assist Device (LVAD) fitted – an artificial heart pump used to support children with severe heart failure, either until recovery or until a transplant is possible – or stay in hospital and wait for a new heart. We asked James what he thought, and he wanted to go home, so we chose the LVAD. James was just 11 when he was admitted to Great Ormond Street Hospital (GOSH) in August 2019. The day he arrived at GOSH, James was very nervous about being in a new hospital, surrounded by staff who he did not know, and who did not know him. With James’ ADHD, he finds it especially difficult to cope with unexpected changes to his surroundings. He was also scared about the possibility of undergoing a big lifechanging operation on his heart. We were all worried.

“We received the diagnosis of dilated cardiomyopathy...and were told that James was in heart failure.”

MEETING THE PLAY TEAM The next day Play worker Kimberley introduced herself to James. Over the next few days Kimberley would come by so they could get to know each other.

When his operation was due to take place, James wasn’t allowed to eat or drink anything prior to the operation. This was hard for James; all he could think about was food, drink...and the operation.

Just as we started running out of ideas to distract James’s attention, Kimberley arrived with a giant pack of Uno cards. Kimberley knew exactly how to put us at ease and moments later she was teaching us all how to play the game. Her kind manner, easygoing personality and good humour kept us entertained, helping to ease all our anxieties before the operation.

Having the Play team at GOSH is just as beneficial for the parents, as they can spend time with your child and you can have time, as parents, to discuss what was happening with consultants and to just take a breather.

After the operation James spent another six weeks at GOSH to recover and build his strength. For much of the time James wasn’t able to leave the confines of the hospital and this would leave him fed up and depressed. But, throughout, Kimberley made sure to see James at least once every day, raising his spirits when he needed cheering up.

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RETURNING FOR A HEART TRANSPLANT It wasn’t long before James was back at GOSH again, this time for his heart transplant. This visit, however, was during the COVID-19 pandemic in Spring 2020, which, of course, added a new level of worry for us all. When we got the call about the transplant, James said ‘I can’t have the heart, it’s a pandemic’, and we had to reiterate ‘yes we can’!

Coming to GOSH was a different experience this time round. There were fewer people about, the canteen wasn’t as busy as it used to be and my space was the room I was given or sitting next to James, I couldn’t go anywhere else outside.

But the transplant team were amazing. They explained everything so clearly and James’ consultant, Dr Matthew Fenton, and the whole team, were so lovely. We knew most of them from when James had his LVAD; from that very first meeting, they all just understood James. It might be strange to say this but when we came back to GOSH, it felt like ‘home from home’.

Shortly after James arrived, Kimberley came to say hello and gave him a Harry Potter goody bag to help keep his mind off the impending transplant.

Following all the infection control measures, Kimberley kept in touch and made sure James was entertained and in good spirits. After the operation, she came to visit and see how everything went.

James was woken a few days after the transplant and, just as before, Kimberley made sure James had what he needed to feel happy and comfortable in the hospital. He was also allocated a psychologist and used the virtual music therapy services. He was only in for 16 days after his transplant before being discharged to go home. It was such a quick turnaround!

JAMES TODAY If you see James now you wouldn’t know he’d had a heart transplant, he’s doing amazingly. His classmates didn’t even realise, so were all excited about hearing him on the local radio recently, receiving an award for bravery. And he loves his Xbox!

It’s all a testament to what happens at GOSH, the care James received was second to none. You hear about GOSH but it’s not until your life is thrown into an upheaval like ours that you realise how incredible everyone is, from the cleaners to the consultants.

Charity support is invaluable, particularly for services like the Play team, which also helps enormously with the children’s mental health. All the staff at GOSH were magnificent, they saved James’s life and we’re so grateful for everything they’ve done.

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THE TEAM CARING FOR JAMES James was under the care of GOSH Consultant Paediatric Cardiologist, Dr Matthew Fenton, and his team. Here he talks through James’ transplant journey.

When James first came to GOSH, diagnosed with dilated cardiomyopathy, there were three scenarios we could follow. Some people with this condition are given medication and get better, some are well enough to go home and, although heart transplantation is the way forward, they’re well enough to not need an artificial heart immediately and therefore go on the waiting list. The third is when they’re so sick they need a mechanical heart to get them to transplant.

And we felt James wasn’t one of those children who could just be on medicine and get better.

Inserting an LVAD is sometimes needed before a heart transplant, and can allow the patients to go home, go back to school, which James did, and he did well with this.

When the pandemic began, we ran initial consultations about transplants online, holding virtual clinics. That’s been a good process; when we’ve received a referral for transplant, within a week or so we’ve been able to set up online consultations with families to answer questions and go through what they can expect. It’s been a lot faster than before when usually, after a referral, it might take a couple of weeks to find time and space to have that initial meeting. And it means we can talk to both parents online, and any other family members. We will continue this process post-pandemic as it’s worked well.

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“It’s a multi-disciplinary team that cares for the child, including everyone from psychologists to physiotherapists and occupational therapists.”

WORKING TOGETHER We have a team of Clinical Nurse Specialists who, when they get an offer of a transplant, co-ordinate a matching and allocation process with NHS Blood and Transplant. They decide if it’s a suitable donor then call one of five consultants, and between us we decide who’d be suitable to receive it.

For James, he received a Donation after Circulatory Death (DCD) heart – a type of heart transplant that’s been a made a clinical reality for children.

The technique, which was developed by the team at Royal Papworth Hospital (RPH) in Cambridge has been made available to children, thanks to a collaboration between GOSH and RPH. This was only first introduced at the start of lockdown and ours is the first paediatric heart transplant programme to benefit from the routine use of available DCD organs.

Using this device, clinicians can ‘reanimate’ the heart outside of the body, allowing it to stay healthy and beating outside of a human body, while it’s transported to the recipient patient.

This not only allows DCD hearts to be used – immediately widening the donor pool – it also allows them to be transported further and gives surgeons and nurses time to assess an organ’s function and apply medication to the heart if required.

The DCD heart transplant programme was previously only available to adults, but it’s now available for children, with really successful results.

This played a major part in James having his transplant earlier than we expected.

We performed many transplants during lockdown; 25 in 2020 (usually there’s about 30 a year between us and Freeman Hospital in Newcastle). Part of that was due to the new DCD programme so it’s made a massive difference in the number of children we can help.

When the organ is received, the co-ordinator then hands over to the whole theatre team.

As well as four heart transplant consultants, our team also has three lung transplant consultants, plus everyone involved in surgery from nurses to anaesthetists. But it’s a multidisciplinary team that cares for the child, including everyone from psychologists to physiotherapists and occupational therapists.

James is a delightful young man. He wasn’t at all well when we first saw him but, since his transplant, we’ve seen such improvement in his development and character. His family have coped brilliantly too. For us, it’s about the chance to help and give children a life they deserve.

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THE SERIOUS BUSINESS OF PLAY Pioneer chats to GOSH Head of Play Services Laura Walsh about why play will always be a crucial part of the hospital’s holistic approach to caring for children.

“Every child has the right to relax and play,” states the United Nations Convention on the Rights of the Child. This right is taken seriously by Great Ormond Street Hospital’s (GOSH) Play team and is at the heart of its incredible work.

Funded by Great Ormond Street Hospital Children’s Charity (GOSH Charity), the Play team – the largest team of its kind in Europe – helps ease the worries of seriously ill children as they prepare for treatments and go through their recovery. The positive aspects of play on children in hospital stretches far beyond putting smiles on faces; the Play team comprises highly trained and experienced Play specialists and Play workers, who give children at GOSH the chance to understand what’s happening around them and make sense of their own potential.

“Every child has the right to relax and play.”

“We know play is a child’s first language and, as a Play team, we’re never measuring or testing them or asking a child to be different than they are,” explains GOSH Head of Play Services Laura Walsh. “We approach each child with unconditional positive regard, which gives them the immediate feeling of trust; they know we’re here for them.”

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THE EVOLUTION OF PLAY Over the last 60 years, attitudes to hospital care for children has advanced significantly. The Platt Report*, released in 1959, revealed the negative effects on children who were, back then, kept on adult wards, not allowed to play or have their parents stay nearby.

The report recommended changes to these practices.

By the 1980s, a holistic approach to child healthcare had started to evolve. It was recognised that children in hospital had the right to have their own dedicated space, access to a primary carer who could stay close by and opportunities to play like they were at home.

“We can track back the history of the GOSH Play team in tandem with these developments,” Laura says. “In the 1980s a nursery nurse would be in a caring role on the wards at GOSH; recognition of the importance of this role grew, as did the need for it to be separated from the physical care children received.”

Now a healthcare profession in its own right, a Play team is focused on ensuring children have appropriate environments where relaxed conditions are created so children feel they’re able to play. “The children also get the opportunity to understand what’s happening to them when they’re in hospital, to ask questions and be appropriately supported to cope,” Laura adds.

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Laura Walsh

SPECIALIST TRAINING The GOSH Play team comprises 50 staff, split into 35 Play specialist roles and 15 Play workers.

In addition to access to dedicated training and apprenticeship programmes, Laura adds how the team learns to work positively with all age groups, even if their career foundations are working in nurseries or, conversely, in youth settings.

THE STATE OF PLAY REPORT GOSH Charity and the GOSH Play team released their first-ever State of Play report* earlier this year. Research captured the views of parents with children aged 5-11, exploring how the pandemic’s lockdowns and restrictions affected how children play, with whom they play and what this might mean for their wellbeing, now and in the future.

“This report really allowed us to say that whether children are well or ill, play is hugely important,” Laura says. “I was particularly moved to see three quarters of parents said they’d really enjoyed and had more time to play with their children. We know children don’t exist in isolation, and it’s always helpful for us to understand what parents are feeling.”

Read the full report here: https://media. gosh.org/documents/GOSH_Charitys_ State_of_Play_report_final.pdf *METHODOLOGY NOTE: Draws on an online survey research among 2,543 parents aged 5-11 years during December 2020 and a literature review written by Laura Walsh.

“For example, to avoid that panic people could have with ‘how do I work with teenagers’, we try to better understand the neuroscience of the teenage brain and the social and emotional changes that they experience. That way, we can better appreciate that teens are sometimes cautious because they’re deciding if they can put their trust in us. What we can do is be respectful, be consistent and persevere.

Listening is the most important thing we can do.”

The Play team also works closely with The Hospital School at GOSH, comparing timetables so there are no clashes, and setting up play sessions after school.

With digital a key focus, the Play team recognises that children who are in hospital may have a knowledge gap in that area, so are currently developing their own resources and working with partners to bring in more digital innovation, while working closely with the school team. Recently, the Play team created virtual workshop programmes, delivering activities attractive to older children, such as music tech, coding, creative writing, poetry and a British Sign Learning course.

When a child is seriously ill in hospital, it can be a difficult time for the whole family; and the Play team is there to support them all.

At the other end of the age scale, the Play team has also invested in training Play workers in baby massage, to support the parent or carer to practice positive touch. “The Play worker demonstrates on a doll and talks the parent or carer through the process,” Laura explains. “Feedback has been really positive, with parents saying it’s helped them bond and feel more comfortable giving their child that soothing touch, as well as seen how it’s key to children’s long-term health.”

When a child is seriously ill in hospital, it can be a difficult time for the whole family; and the Play team is there to support them all. “For many parents, they’re separated from the rest of their family and the emotional burden can be massive,” Laura says.

“Our team gives parents a break while we run a play session with their child, in the knowledge their child is safe. They’re always welcome to stay but both the child and the parent can benefit from some time away.”

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WE LOVE THE PLAY TEAM! Amelia-Rose’s story by mum Steph and dad James

WORKING DURING A PANDEMIC As elsewhere, the Play team had to change some ways of working during the COVID-19 pandemic, but its innovations during this time revealed work practices it’s keen to continue. “We’ve been running virtual pre-assessment support sessions, so even before a child steps through GOSH’s doors, they’re feeling better about what to expect and who they’ll see,” Laura explains. “We also introduced remote play sessions on Zoom, where children – often with the same condition – were able to have a virtual platform to engage with each other; we’re going to continue this too. Our programmes will be blended when we’re able to meet again.”

WHAT THE FUTURE HOLDS Over the next three years, the Play team is focusing on several priorities to boost the incredible work it already does. The team will be furthering its collaboration with GOSH colleagues, looking at how they can work more closely together to give children a better sense of security before they come in for treatment.

“We also understand there’s still a gap in academic research on the power of play for children in hospital and we’re committed to filling that gap, using the work we do as a Play team to create papers and research that can be used more broadly to improve child healthcare,” Laura says.

“We’re also placing a Play specialist within the palliative care team to include, and focus on, the quality of life for children while they’re with us and give them the best understanding of what has happened and what will happen. We want to develop a better way to work with parents for sense-making around those very difficult times.”

The Play team takes play seriously – an ethos that is long set to continue at GOSH. * The Platt Report, formerly known as the Welfare of Sick Children in Hospital (Ministry of Health, 1959) was the result of research into the welfare of children undergoing medical treatment in the UK.

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At her 20-week scan, Amelia was diagnosed with a rare heart condition causing a vascular ring to form around her trachea and oesophagus. Three months after she was born, Amelia was also diagnosed with an atrial septal defect (ASD): a hole in the heart. Within a year, she had three heart surgeries at GOSH. During her time at GOSH, the Play team was so important. As Amelia got older, she was aware of what was going on and would get agitated and bored. We were stressed and tired so entertaining her all the time was difficult. The Play team came and did new things with her, were so reassuring and it was great to have them to talk to.

They’d make fun out of everything and create things out of nothing...an aluminium pot could become exciting! Amelia always had a smile on her face and that was down to the Play team. She wouldn’t have been as happy as she was if they hadn’t been there. They always make us feel welcome.

Now three years old, Amelia is doing well. She remains under the cardiac and respiratory teams at GOSH, has a review with the cardiac team every six months and appointments with the respiratory team every month or two.

GOSH has done wonders for Amelia. Her personality is amazing, she’s extremely sassy and she’s got a lot of attitude.

Ultimately, GOSH saved our little girl and made her the cheeky little person she is today. They are a massive part of our lives, and we can’t thank them enough.

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We were in and out of GOSH constantly. From her diagnosis onwards, it became a journey of figuring out how to manage her condition.

We started off on methotrexate to get everything under control but, while the treatment was working, doing the injections at home by myself on a strong two-year-old was difficult. I mentioned it wasn’t working for us as a family and her treatment gradually changed. That my concerns were listened to meant a lot. GOSH took this on board and thankfully the tocilizumab treatment we changed to worked just as well. This treatment meant we came into the hospital more often, but every time was a lovely experience for Kayla because GOSH made it that way.

The Play team was absolutely brilliant.

Kayla felt as if she had new friends, they made her feel special and as if hospital wasn’t a terrible place to be.

KAYLA’S STORY

BY MUM RACHEL

As a parent, you’re dealing with this experience, but you also have to carry on with life. I was commuting from the hospital to work and was tired and stressed. Having the Play team’s support meant Kayla was always enjoying a new toy, book or game. I was grateful it wasn’t a terrible experience for her and there are many happy memories from such a difficult time.

Just before her second birthday, Kayla suddenly stopped walking, talking and eating, and became really stiff. After her local hospital discovered she had fluid in her lungs and around her heart, she was rushed to GOSH where she was diagnosed with juvenile arthritis.

Gradually, the gap between treatment was made longer each time to around six weeks.

The treatment worked well and, from age seven, we moved to monitoring, which meant she wasn’t on any medication at all. Now Kayla’s 11, we have annual follow-ups at GOSH.

SUMMER PIONEER APPEAL Please support the GOSH Charity Summer Pioneer Appeal and help us raise £140,000, which will enable the charity to continue to support the hospital and provide the essential Play Services for seriously ill children now and in the future. Please visit gosh.org/pioneer-play to donate today.

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As GOSH welcomes the opening of the new Sight and Sound Centre, Pioneer highlights how the hospital can continue to build the state-of-the -art facilities its patients and families need, thanks to charity support.

It may be approaching its 170th birthday next year but, within its long history, Great Ormond Street Hospital (GOSH) has constantly evolved its facilities to ensure seriously ill children are treated in the best possible environment.

These facilities and buildings play a crucial part in the hospital’s ability to continuously provide extraordinary care and expertise. Building development is a hospital priority that we’ve seen come to fruition in the last few years alone. Within the last decade the Mittal Children’s Medical Centre, comprising the Morgan Stanley Clinical Building and the Premier Inn Clinical Building, has opened.

And, more recently, the hospital has welcomed the Zayed Centre for Research into Rare Disease in Children, while this summer the Sight and Sound Centre, supported by Premier Inn, will open.

THE POWER OF PARTNERSHIPS The Zayed Centre for Research brings together pioneering research and clinical care under one roof, designed to help drive forward new treatments and cures for seriously ill children from across the UK and international patients. A partnership between GOSH, UCL and Great Ormond Street Hospital Children’s Charity (GOSH Charity), it was

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made possible thanks to a transformative £60 million gift from Her Highness Sheika Fatima bint Mubarak, wife of the late Sheikh Zayed bin Sultan Al Nahyan, Founder of the United Arab Emirates.

Building development is a hospital priority that we’ve seen come to fruition in the last couple of years alone.

Approaching its second anniversary in October this year, more than 13,000 children have been treated there for their rare and complex conditions, while 400 researchers and clinicians now work within its laboratories.

When COVID-19 hit, some research activity taking place there pivoted; researchers worked together to test patient and staff member samples to allow staff and patients to be treated and “sequenced” more than 1,300 COVID-19 genomes, helping scientists learn about gradual changes in the virus over time. And, in October 2020, it was announced the first human challenge trial for a COVID-19 vaccine would take place at the Zayed Centre for Research; its state-of-the art facilities were chosen to manufacture the virus needed for the trial.

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THE ZAYED CENTRE FOR RESEARCH – TOM AND OLI’S STORY,

BY MUM HELEN Both my father and half-brother sadly died of sudden aortic dissections. My four children have also been monitored and, in recent years, my eldest two, Tom and Oli, have both developed dilated aortas. They’re now at the Zayed Centre for Research under a rare inherited diseases clinic.

Oli started developing symptoms when he was around nine, Tom when he was around six. They take medication and are outpatients at the Zayed Centre for Research, where they have echocardiograms.

It’s such an incredible building, with many interactive stations where children can learn about genetics and research. It helps Oli and Tom understand what they’re coming to hospital for but in a more playful and less worrying way.

The boys are interested in science, so with the entrance to the centre effectively being a walkway over a huge research lab, they were fascinated to see what everyone in the lab was doing and by the idea of medical researchers hard at work in the same building.

We feel incredibly lucky to be under a hospital with facilities like the Zayed Centre for Research. The way the building is set up, it’s obvious the investment that has been made and the number of researchers who are there to help families like ours is very visible.

2021: A NEW BEGINNING The UK’s first dedicated medical facility for children and young people with sight and hearing loss, the Sight and Sound Centre, supported

by Premier Inn, will be welcoming children and the families through its doors this summer.

GOSH Head Orthoptist Bronwen Walters and GOSH Paediatric Ophthalmology Consultant and National Institute for Health Research Clinician Scientist Lola Solebo, tell Pioneer how the Sight and Sound Centre will transform the hospital experience.

Lola: The facilities have been designed with children with sensory and other developmental impairments in mind. Paediatric ophthalmology has changed so much over the last decade; we’re able to offer patients new treatments, new monitoring tests and imaging techniques that tell us much more about their disease. We also understand more about their quality of life needs, and can include these in innovative research.

Children with conditions that affect their ability to see and hear make up the largest outpatient group in the hospital, so the new facilities will make a huge difference.

It means so much to us – that we can enter a space designed with the children at the centre, when you’re working your hardest to give the patients the best possible experience and outcomes.

Bronwen: We’re finally in a space designed for us, with room to grow and utilise new techniques for examining children, including a state-ofthe-art ocular imaging suite. This purpose-built space is designed around the needs of children with sensory impairment, which minimises their movement around the environment, making them feel safe and welcome. They’ll also have access to a beautiful garden where they can safely explore their surroundings.

The new department allows us to focus on the child (and family) as a whole and adopt a holistic approach to their care, rather than just concentrating on their eyes and vision. We’re lucky to have some of the best clinicians in the field of paediatric ophthalmology here at GOSH, and now we have world-class surroundings to match.

Housed in the building formerly known as the Italian Hospital, GOSH Charity pledged £25 million towards its completion, with support from a range of generous donors including Premier Inn, as well as fundraising activity, such as the Sight and Sound Gala. Having all specialties co-located will enable better multi-disciplinary working and support with specific needs, helping GOSH treat patients with sensory impairment in a more suitable environment within the outpatients’ department.

The building design purposefully represents a home from home, and has specialist signage and lighting, as well as multi-sensory elements throughout that meet the specific needs of children with sensory loss.

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A HELPING HAND Pioneer discovers how support services – from large-scale to small – available to the children, families and staff at GOSH are an important part of making a worrying time a little bit easier to cope with.

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“Those additional support services are helping families through the toughest times of their life.”

Having a seriously ill child in hospital can be an incredibly stressful time for families. But when they arrive at Great Ormond Street Hospital (GOSH) they know they’ll receive the best, life-changing care for their child.

In addition to the world-class medical care they receive, GOSH has long adopted a holistic approach to a child’s treatment and recovery, offering a raft of support services – many of which are funded or part-funded by Great Ormond Street Hospital Children’s Charity (GOSH Charity) – to help the children and their families get through this time.

The Play team, fully funded by GOSH Charity, helps children prepare for treatments and supports them through their recovery through play. They lift children’s spirits and bring a sense of normality in anxious times (turn to page 12 to read more about how the team helped James who came to GOSH for a heart transplant). And the charity also supports family accommodation close to the hospital, so mums and dads can stay close by their children – every year, around 2,000 families stay in this accommodation.

The charity also helps fund the hospital’s social work service and its multi-faith chaplaincy team, dedicated to providing GOSH families with advice and support they need. And, last year, more than 7,000 meal vouchers were provided to breastfeeding mums, to help ease the burden of having a seriously ill child in hospital.

These services, which have continued throughout the COVID-19 pandemic, have long been a vital lifeline for families.

MAIA’S STORY

BY MUM MEERA Born six weeks premature, and weighing just 3lb 1oz, doctors discovered Maia had holes in her heart. She was transferred to GOSH for interim heart surgery but, as preparation for the operation began, Maia had difficulty breathing. She was diagnosed with long segment tracheal stenosis (narrowing of the trachea, which provides air to and from the lungs) and this had to take priority over heart surgery.

When we found out we were coming to GOSH, because we were coming in from Cambridgeshire, we could stay in the family accommodation, which meant a lot to us to be able to be close to Maia.

I was breastfeeding so received charity funded meal vouchers. This was an amazing service as it meant I didn’t have to worry about what I was going to eat, which is the last thing you think about when your child is in hospital.

Maia’s surgery was pioneered at GOSH so without the funding that also goes into research, Maia wouldn’t be here today. The charity’s supporters are saving children’s lives.

And, by the charity funding those additional support services, they’re also helping families through the toughest times of their life.

Maia’s doing really well now. She has annual check-ups at GOSH for her heart and trachea, and, during lockdown, Maia learnt to ride her bike in our garden! She loves GOSH and now she’s a bit older, she understands how GOSH looks after her, so it’s lovely she knows she’s making a difference when we fundraise for the charity.

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HARRY’S STORY

BY MUM DEBBIE At just eight hours old, I saw the colour in Harry’s cheeks was unusual. A senior midwife checked him and immediately saw he was blue. He was taken in an ambulance to intensive care at GOSH for specialist treatment, where he was diagnosed with critical pulmonary stenosis.

This is a narrowing of the valve in the heart between the right pumping chamber (right ventricle) and the large blood vessel that carries blood to the lungs to pick up oxygen (pulmonary artery). This means the heart must work harder to pump blood through the narrowed valve and, over time, makes the muscle in the right ventricle thicken.

Harry’s consultant decided the best course would be to perform open heart surgery to insert a stent to keep the heart functioning.

The thought of our baby boy having major surgery when he was so tiny was terrifying.

Harry was initially too small to have open heart surgery, so two weeks were spent feeding him up until he weighed six pounds, at which point they were prepared to do the surgery. His recovery went well and he was discharged seven days later.

When Harry first went into GOSH, I was asked how I was planning on feeding him. I wanted to breastfeed but was concerned I wouldn’t be able to, because he was in intensive care. I was given a pump and taken to the breast pumping room, which I knew had been funded by GOSH Charity.

That breast pumping room was the most important thing in those first three weeks, doing the only thing I could for Harry at that point. It meant I could still breastfeed Harry, even if I couldn’t cuddle him.

“That breast pumping room was the most important thing in those first three weeks, doing the only thing I could for Harry at that point. It meant I could still breastfeed Harry, even if I couldn’t cuddle him.”

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Six months later Harry required further surgery, all part of a plan that would take four years and two further major surgeries to complete. At the age of four Harry had the final of the three surgeries, which would go a long way to helping his heart condition.

Now nine, Harry has annual check-ups and won’t need any other surgery until adulthood.

His consultants are pleased with his progress.

Harry loves entertaining people, doing funny impressions to make people laugh. And knowing how important these support services are for the families in the hospital has made us even more passionate fundraisers for GOSH Charity.

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SUPPORTING GOSH’S SUPER STAFF DURING THE PANDEMIC The hospital has relied on the support of GOSH Charity more than ever during the pandemic, as it continued to deliver lifechanging care to children.

Thanks to its donors and fundraisers, a new rapid response funding call for projects was launched, to help provide benefit to GOSH or GOSH staff and the community of patients and families it serves. This means projects varying from monitoring the mental health of patients to supporting the management of COVID-19 are underway. Funding was also awarded to the GOSH Learning Academy (GLA) Clinical Simulation team and the charity was able to support the GLA with funding for 1,500 clinical and non-clinical staff to attend COVID-19 upskilling sessions.

WELCOME WELLBEING SERVICES Once the hospital identified the need for further wellbeing support to certain staff groups, particularly those affected by COVID-19, the charity then worked with NHS Charities Together to provide that support. (Turn to page 26 to find out more about how staff were supported.)

Pioneer talks to Dr Mandy Bryon, GOSH Consultant Clinical Psychologist and Joint Specialty Lead for Psychological and Mental Health Services, about how crucial those support services became for staff and how it’s key they continue.

“When we recognised COVID-19 was going to hit in March we knew it wasn’t going to be easy. At the time, the Trust’s workload had shifted slightly, in terms of new referrals, which gave a bit of capacity in our psychology and mental health services.

“When I spoke to the whole department and said we could offer staff wellbeing support, they were 100% for it.

“We established a dedicated email for staff to contact, set up screensavers and posters to show everyone if they wanted someone to talk to, there would be someone at the end of the phone. We were amazed at the take up. As services started to return to seminormal during the summer last year, the mental health practitioners went back to their day jobs but we’d started something we couldn’t just withdraw.

“We secured some charity funding to take the service forward; the charity’s been superb and we’re so grateful for the fundraising and donations from all the supporters. The funding went to training other people in the Trust, who didn’t necessarily have a qualification in psychology or mental health, but were interested in supporting colleagues.

“This meant training three different cohorts of staff.

Peer support workers – colleagues who you can turn to if you’re worried or concerned about anything from vaccinations to finances, who’d be trained to signpost to more information or escalate up to another colleague. We’d identified that, with some groups, cultural issues around opening up and talking to strangers wasn’t easy for them. So being able to talk to colleagues, people you know well and see every day, was essential. We recruited 40 peer support workers from within the Trust, who received training in how to have a psychologically savvy conversation, giving them the confidence to recognise if something needed an escalation.

“With the funding we could also train some wellbeing coaches from a nursing or Allied Health Professional background, people who wanted to deliver more than signposting, as well as people to be Trauma and Risk Assessment practitioners.

“Now we have ongoing support, we’ll be listening to our staff and altering it along the way. I’m proud of what GOSH is offering. If staff – anywhere – are feeling looked after and supported they’re going to do a good job, it helps with staff retention which, in turn, means staff have a long-term connection with the children and their families. Furthermore, if staff have had a helpful conversation with someone themselves, it helps them recognise similar issues with children and their families. To be able to say to them ‘I know this has been tough’, families genuinely feel the staff care.”

Turn to page 26 for more in-depth interviews with heads of GOSH forums.

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EVERY VOICE COUNTS The NHS has worked tirelessly throughout the pandemic and, at Great Ormond Street Hospital (GOSH), staff have continued to go above and beyond in their care for seriously ill children and their families. To help take care of GOSH staff, both the hospital and the charity set up wellbeing and support initiatives, including a Trust-wide wellbeing service that launched in March (turn to page 25 to find out more).

Charity support has been integral to the wellbeing of all GOSH staff during the pandemic, as well as the patients and families they care for. Pioneer speaks to the hospital’s Forum chairs about the difference it’s made.

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Additional charity funding, from GOSH Charity and NHS Charities Together, also launched an innovative programme to support GOSH staff groups disproportionately affected by COVID-19.

This included a mentoring programme for black, Asian and minority ethnic staff at GOSH, a cultural intelligence training programme for senior staff to understand the needs of the workforce and the development of a wellbeing practitioners’ network to help staff manage stress and trauma.

This support has been welcomed by the various hospital Forums, who work to ensure the voices of every staff member at GOSH are heard, valued and included. Here, Pioneer talks to three of the Forums at GOSH. Chairs of the Black, Asian and Minority Ethnic Forum, Disability and Long-Term Health Conditions Forum and the LGBT+ & Allies Forum, share their reflections on the past year, how their work has a positive impact on staff and, subsequently, on the children and families at GOSH, and how charity support has been vital for wellbeing.

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Why were the wellbeing initiatives important for LGBT+ staff at GOSH? When the pandemic hit, we were concerned about the mental health of our members. But the wellbeing services for the staff at GOSH have been amazing. The Forum is sent information each week for our members to read or reach out to get involved, such as seminars, 1-2-1 sessions and group support, plus speaker events that have been incredibly helpful. Staff have really welcomed this support in lots of different ways.

And happy staff equals happy patients. It’s important staff feel safe and secure in the knowledge they’re being looked after.

JAMIE WILCOX – CO-CHAIR OF THE LGBT+ & ALLIES FORUM How is the Forum helping to drive forward equality and inclusion at GOSH? It’s important that anyone who identifies as LGBT+ feels comfortable and confident that the Trust will support them. We’re focusing on increasing visibility for LGBT+ staff at GOSH, reviewing hospital policy to ensure it’s inclusive, developing education and learning for GOSH staff through our work with the other Forums and potentially looking to set up a mentoring programme.

We want everyone to feel included and increasing visibility is a vital part of that. Two years ago, we produced a GOSH rainbow badge that says, ‘GOSH we’re proud’ for staff to signal they’re safe to talk to about LGBT+ issues.

We’ve had many lovely stories about patients seeing nurses wearing them and feeling able to come out and talk about their situation.

What are the key priorities for the Forum?

Our focus and drive for 2021 is the freedom to be yourself, including visibility, intersectionality and feeling safe in your workplace.

We’re hoping to support the Trust more with education and learning, particularly on trans and non-binary issues. Part of this will involve working with the hospital to make sure policies are in place to protect any staff, volunteers, children or families that identify as trans and non-binary. We also need to make sure we’re educating staff to use the right language when working with these patients.

“Happy staff equals happy patients. It’s important staff feel safe and secure in the knowledge they’re being looked after.”

Why is collaborating with other Forums at GOSH so important?

To help the Trust develop strategies for tackling inequality, prejudice and exclusion. We want to make sure we’re sharing information because our voice is stronger if we link together. This work is also important for intersectionality, as staff may hold a number of protected characteristics that aren’t just covered by one forum.

We’re planning to create an induction film with the GOSH Learning Academy for all new starters at GOSH, focusing on the different forums and how GOSH is approaching equality and diversity issues. It’s vital staff understand that prejudice and discrimination can appear in many different and not necessarily overt ways.

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This type of leadership is vital for ensuring any change geared at improving equality, diversity and inclusion is sustainable and sparks a cultural shift.

We also plan to launch Action Learning training sessions to help black, Asian and minority ethnic staff build their problem-solving skills using real-life scenarios and support from black, Asian and minority ethnic colleagues.

How important has charity support for GOSH staff wellbeing services been?

RENEE BARRETT – CHAIR OF THE BLACK, ASIAN AND MINORITY ETHNIC (BAME) FORUM How has the Forum grown at GOSH since it launched in 2018?

It seeks to empower the voices of black, Asian and minority ethnic staff, volunteers and patients at GOSH by influencing a cultural and organisational agenda of improving equality, diversity and inclusion.

We’re focused on creating opportunities for staff to grow leadership skills and develop careers by providing mentorship and peer-to-peer support, as well as social and networking opportunities. We have regular Forum-wide listening events to hear experiences of our staff, provide relevant support and feedback any systemic issues to Trust leadership.

Our Forum sponsors, GOSH Chief Nurse Alison Robertson and GOSH CEO Mat Shaw, have shown they genuinely care about moving the Trust in the right direction in respect to diversity and inclusion.

How has charity funding for key initiatives helped advance equality and diversity at GOSH? It’s widely known the pandemic has had a disproportionate effect on black, Asian and minority ethnic people. This highlights the many challenges faced by these communities and underscores the importance of catering for, and including, people of colour when making decisions around reducing structural and social inequalities.

So, the mentorship programme, for example, will give staff access to black, Asian and minority ethnic mentors who are best placed to understand their lived experiences; staff wishing to progress in their careers need that larger pool of senior people to help build their network.

The cultural intelligence training programme with the GOSH Learning Academy [partfunded by GOSH Charity] will also be important for growing empathetic leaders.

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Support from GOSH Charity has been incredibly important to care for staff wellbeing. COVID-19 has impacted virtually every area of life, so letting staff know it’s ok not to be ok helps them provide the best care for their patients.

We’re working closely with the wellbeing team to create specific mental health and wellbeing support sessions, so black, Asian and minority ethnic staff can explore the same issues experienced by many, but through a unique lens by people of colour.

“Support from GOSH Charity has been incredibly important to care for the wellbeing of staff during the pandemic.”

Although these schemes are new, the initial feedback we’re receiving is that local advocates, like the peer support workers within the wellbeing practitioners’ network, are important for ensuring staff feel supported.

What impact has the Forum had so far?

Our black, Asian and minority ethnic colleagues are now seeing themselves as an active part of a positive cultural change, hopeful about future progress on reducing inequalities and that it’s ok to bring their authentic selves to work.

A big part of authenticity in the workplace revolves around being able to talk about your life and experiences without fear of reprisal.

For all staff to do their best work they need to feel comfortable about being themselves; to be seen as who they are and not what they are.

We’re working hard with our communications lead Astrid Baez, policy lead Kate Campbell and forum execs like Melanie Callum and others, to ensure this cultural shift takes place. Our aim for GOSH is to see our reputation for the highest standard of care associated with happy, supported and fulfilled staff, irrespective of race, religion and sexuality.

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GERALDINE TRIMMER, LORRAINE BARWICK, TALLULAH BATHURST, TOM BYFORD – CO-CHAIRS OF THE DISABILITY AND LONG -TERM HEALTH CONDITIONS FORUM What does the Forum set out to achieve for its members?

One key aim is to celebrate and encourage inclusivity by making our voices heard and shining a positive light on disability and long-term health conditions. We want to help remove barriers around disability, so our staff can feel and know they’re a crucial part of GOSH. An important part involves increasing the organisation’s understanding of disability and raising awareness that not all disabilities and long-term health conditions are apparent and visible.

Building further on these aims, why is it important everyone’s voices at GOSH are heard and included?

Many children and young people treated at GOSH are living with complex long-term conditions or disabilities, so it’s vital they see people working at GOSH who are just like them. We want to let them and their families know it’s their world too and they can fit into the normal world of work.

We offer real lived experience of different health conditions, people who may have felt excluded or marginalised at some point in school, college or work. For instance, one of our Forum co-chairs has hearing loss and, over her years of working at GOSH, she’s been the first adult many parents and young people have met who wears hearing aids.

She’s found it common for them to ask questions about her experiences and how she copes with different aspects of hearing loss.

How has support from the Forum and GOSH Charity helped to manage members’ concerns during the pandemic?

All GOSH staff have had to make huge adjustments to their ways of working, which has brought new stresses and strains to their working lives. But, for some staff with long-term health conditions or disabilities, there are additional worries.

We’ve been considering how best to support the issues that can affect our members, such as mental health, isolation, difficulty getting access to supplies or medical support, and how best to support staff who are shielding. Charity funding is therefore of crucial importance because it enables and supports the development of programmes to help all GOSH staff to manage, cope and adapt.

What are your future plans for the Forum?

Initially, we’re going to be focused on governance and expanding our membership so people know we’re here and can come and join us. We’re also excited about the opportunities to support staff and to be an expert voice for the GOSH leadership teams when looking at policies and considering their potential impact for staff with disabilities, additional needs, or long-term health conditions. We’re a diverse team at GOSH and look forward to being able to add to our expert voice as our Forum grows.

“Many young people who are treated at GOSH are living with complex long-term conditions or disabilities, so it’s vital they see people working at GOSH who are just like them.”

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WHY I SUPPORT THE CHARITY Sue Patrick is a long-term supporter of GOSH, after daughter Megan had life-saving heart surgery there in the 1990s.

She tells Pioneer how she was moved to give back, with a legacy in her will to GOSH Charity.

A DAUNTING DIAGNOSIS I first came to Great Ormond Street Hospital (GOSH) in 1994, just after my 20-week scan for my first child.

The scan showed fluid was collecting behind the neck of my unborn child, which I was told was a sign of stress. To investigate further, I was scanned in more detail at GOSH by Dr Ian Sullivan, where I learned that the left side of the baby’s heart was also enlarged. I felt reassured at the time that they would check the baby once she had been born.

When initial x-rays and tests were carried out at London’s Homerton Hospital, where Megan was born, I was exhausted and in hormonal turbulence, but delighted to be sent home with my baby the next day. But when we returned home, Megan cried and cried, she lost weight and wouldn’t feed well.

Fortunately, Dr Ian Sullivan was visiting Homerton Hospital the week after Megan’s birth, and we were invited to bring her back for a scan. That was when I was given the bombshell diagnosis that Megan needed to have urgent heart surgery for coarctation of the aorta. This condition occurs in the weeks after birth when a major blood vessel supplying blood to the baby in the womb narrows.

It completely hit me out of the blue. I recall being told that, without the life-saving surgery, she would most likely collapse in the next week or so and this would probably be fatal. Those were the days before mobile phones too, so I only just managed to stop my husband from boarding a plane to Japan for business so he could join us at GOSH. To this day, I’m unsure if Dr Ian Sullivan came to Homerton Hospital to see Megan specifically or if he held a regular clinic there. Either way, to say I’m grateful he was there is an understatement.

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LIFE-SAVING SURGERY

LEAVING A LEGACY TO GOSH

Arriving at GOSH initially felt overwhelming with so many children in reception, waiting to be seen by doctors. We were directed to the cardiac unit and shown to a room where Megan was placed in a tiny cot. We were told we could sleep in the same room with her the night before her surgery; not that we really managed to sleep.

Fast forward to today and Megan is living and working in London, after achieving a first-class degree at university. She’s a beautiful person, inside and out, and I’m proud of her for what she’s had to go through.

Less than 24 hours after diagnosis, I placed my tiny baby on what seemed like a huge table in preparation for what turned out to be a seven-hour operation.

Megan’s aorta was narrowed and didn’t allow enough blood to get through to the lower part of her little body, causing her heart to work harder. So, the surgeons cut the narrowed section of the aorta and joined it again end-to-end to make it wider.

Thankfully the surgery was a success with almost instant results. I recall being told the surgery had only been available within the last 10 to 20 years, which made Megan’s recovery all the more remarkable.

She slowly began to feed better, and her breathing and skin tone improved. Then after 10 days of intensive care and a stay in the high dependency unit, we took her home. That was daunting and scary as we had to look after her ourselves, without the doctors and nurses at GOSH to rely on.

But over the years, the check-ups changed from monthly to annually. And then, aged 18, Megan was transferred to the London Heart Hospital, where she now goes every two years.

I’m forever grateful to the doctors and nurses at GOSH for saving her life, so leaving a legacy to GOSH in my Will is the least I feel I can do, to say thank you for the care and support we received over the years. I’ve also had a small monthly direct debit set up with GOSH for the past 15 to 20 years. I plan to continue this regular payment, even though Megan is no longer under the care of GOSH, as a small way of saying thank you.

I also read every issue of Pioneer magazine to learn about how GOSH has changed and continues to change since we first visited the hospital in 1994. I like to think the money I’ve given and the legacy in my Will to follow will make a small difference.

“I recall being told the surgery had only been available within the last 10 to 20 years, which made Megan’s recovery all the more remarkable.”

Write your Will for free today and help us to save more lives of children in the future To write your Will with a participating solicitor across the UK call the National Free Wills Network on 0800 011 2030 (Mon–Fri 9am–5pm) or email info@nationalfreewills.net To write your Will online in England or Wales go to Beyond-life/gosh quoting ‘FREEWILL19’ at checkout Update your Will today in England or Wales with a specialist Will-writer either at home, via telephone or video conference Visit: www.thegoodwillpartnership.co.uk/ gosh Call The Goodwill Partnership on 01482 976029 (24 hours a day, seven days a week) Text GOODWILL10 to 60777 or email goshcc@thegoodwillpartnership.co.uk

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GLOBAL CO-OPERATION LEADS TO NEW TREATMENT Pioneer discovers how a global relationship is advancing clinical trial work to create a better future for children with a rare, inherited condition.

What if a substance that naturally occurs in everyday foods, could be used to treat a rare and debilitating condition?

That’s what a team of researchers at Great Ormond Street Hospital (GOSH) and the Oregon Health and Science University, USA, are hoping to prove in their first set of clinical trials regarding an inherited disorder called Pantothenate kinase-associated neurodegeneration (PKAN).

“Research funding from GOSH Charity has been critical in bringing this trial to the UK.” Spearheading the UK front of this exciting clinical trial work, with the support of Great Ormond Street Hospital Children’s Charity (GOSH Charity), is Professor Manju Kurian, an Academic Paediatric Neurologist and NIHR Research professor based between the UCL Great Ormond Street Institute of Child Health (GOS ICH) and GOSH, and Dr Robert Spaull, a Paediatric Neurology Trainee who is undertaking a PhD on this clinical trial.

Professor Kurian first started working on brain iron accumulation disorders, including PKAN, ten years ago and has since formed a close collaboration with Professors’ Susan Hayflick and Penny Hogarth at the Oregon Health & Science University.

WHAT’S PKAN? Around three in every million children are affected

by PKAN, a devastating and fatal condition that targets the brain. Although children with PKAN are born healthy, by the age of three symptoms often start to appear. It begins with falls and trips, which rapidly progresses to severe movement problems and, over time, most lose the ability to walk and talk.

PKAN is caused by an inherited error within our DNA, which prevents the conversion of vitamin B5 into Coenzyme A (CoA): an essential chemical in the body. CoA plays a vital role in many important processes in the body, including energy production and the making of fatty acids. This inability to produce CoA causes a build-up of iron in a specific region of the brain and leads to the debilitating symptoms of PKAN.

1.

Original source of Vitamin B5

2. Vitamin B5 can’t be converted into CoA

Vitamin B5

CoA

3. Absense of

CoA causes iron levels to increase in the brain Healthy brain

4.

PKAN brain

Increased iron levels may contribute to the symptoms of PKAN

Sadly, there are currently no cures for this condition, which results in major disability and a high risk of death in childhood. To date, the only treatments available focus on relieving the symptoms of PKAN, without directly targeting the underlying genetic error. For children with living with PKAN, research is their only hope.

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BYPASSING THE ERROR

THE POWER OF COLLABORATION

This is where GOSH Consultant Professor Manju Kurian and Clinical Research Fellow Dr Robert Spaull are hoping to make a breakthrough, with the first targeted treatment of its kind for children with PKAN.

“With the help of our North American collaborators, Professors Hayflick and Hogarth, who are at the forefront of research into PKAN, we’ve worked hard to bring these findings from the lab to the first clinical studies,” Manju says. “We meet regularly every month by video conference, which has worked really well and is completely pandemic proof.

The process of converting vitamin B5 into CoA involves a pathway with multiple steps. The DNA error that causes PKAN affects an early pathway step to produce a block in the pathway. Researchers* have found that they can bypass the block by supplying mice who have the PKAN DNA error with a compound called CoA-Z. This compound is naturally produced at a later stage of the pathway and so can be converted into CoA, without the need for vitamin B5.

“For a rare disease like PKAN, this kind of international collaboration is essential. That’s because it’s hard to get sufficient participants to answer scientific questions, so having multiple sites involved helps to increase participation and strengthen research conclusions.”

HOPES FOR THE FUTURE Vitamin B5

4-PPT

CoA

CoA-Z

TAKING TO TRIAL To pursue this exciting finding, Manju and Robert are leading the UK with a clinical trial, evaluating the effectiveness and tolerability of CoA-Z in 24 children with PKAN. A similar study is also currently underway in North America in collaboration with the Oregon Health and Science University.

In the first six months, three quarters of the children will be given different doses of CoA-Z, and one quarter will be given a placebo. Then, in the following 18 months, all the children will be provided with a set dose of CoA-Z via a fruit-flavoured gel. The trial will run through to the end of August 2023.

Although the clinical trial is in its early days, this novel therapy could potentially yield powerful benefits for PKAN patients across the globe by reducing disability and hugely improving their quality of life.

“But first, the phase II trial must show CoA-Z to be safe and well-tolerated, so we can hope to proceed to a phase III trial,” Robert explains. “Provided that all goes well, we ultimately plan to develop CoA-Z as a medicinal food, which could be prescribed within the NHS and used worldwide to treat PKAN.”

“Although the clinical trial is in its early days, this novel therapy could potentially yield powerful benefits for PKAN patients across the globe by reducing disability and hugely improving their quality of life.”

“Research funding from GOSH Charity has been critical in bringing this trial to the UK and advancing this promising research into a treatment for PKAN,” Manju adds. “As our trial product (CoA-Z) naturally occurs in very small quantities in everyday foods, it is not a ‘patentable’ treatment.

So, charity support is essential, as funding for this research may not come from elsewhere. Without this support, the trial would not be happening.” *Researchers include • Sibon OC, Strauss E (2016) Coenzyme A: to make it or uptake it? Nat Rev Mol Cell Biol 17: 605–606

Professor Manju Kurian and Dr Robert Spaull at the Zayed Centre for Research into Rare Disease in Children

• Srinivasan B et al (2015) Extracellular 4’phosphopantetheine is a source for intracellular coenzyme A synthesis. Nat Chem Biol 11: 784–792

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PARENT’S PERSPECTIVE Jake was diagnosed with Burkitt’s non-Hodgkin lymphoma, a rare and aggressive form of cancer, in January last year.

He spent most of 2020 receiving treatment at GOSH, during the COVID-19 pandemic. Mum Danielle shares his story.

Jake began to feel unwell in January last year, saying he had a stomach ache and thought he might be sick. I kept him home from nursery for a while and hoped it would run its course.

But he couldn’t seem to shake it off.

A week later, he still hadn’t improved. He’d started getting headaches and had become weak and lethargic, saying his legs hurt too much to walk. I took him to the doctors, who put the cause down as viral.

“The staff on Elephant Ward were amazing. On our down days they were there to listen, to comfort and to give advice. On our good days, they were there to have fun and share laughs.”

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The next day Jake spent all day sleeping on the sofa with his hand over his left eye, listening to, rather than watching, programmes. The day after, when I asked how he was, he burst into tears, saying he didn’t feel well. I carried him downstairs and we sat on the sofa. He asked for his iPad, but when I pointed out it was in front of him, it was clear he couldn’t see it. Then, when I made a funny face at him and asked him to tell me what I was doing, he started crying and said he couldn’t see me.

I knew something was seriously wrong, so I called 111 and was told to take him straight to A&E where he was given a CT scan. Shortly afterwards, we were brought into a small room and told those awful words that Jake had a marble-sized mass behind his eyes pushing on his optic nerves, hence his loss of vision and headaches.

Then, before we knew it, we were being bluelighted to Great Ormond Street Hospital (GOSH). It was all such a blur; I just couldn’t believe it was happening.

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ARRIVING AT GOSH

RINGING THE END OF TREATMENT BELL

The day after we arrived at GOSH, he was given an MRI. Just one day later, he was having surgery to get a biopsy of the tumour and remove pressure on his optic nerves.

After seven months, Jake’s treatment finished in August 2020. He still needs regular MRIs every three months and check-ups with ophthalmology to monitor his vision, which has improved but remains impaired.

Jake was in surgery for eight hours, which felt like such a long time, but the surgeon was fantastic. As soon as he came out of the theatre and saw me, his face lit up.

I gave him a big hug, and he told me Jake was okay.

The biopsy came back as Burkitt’s non-Hodgkin lymphoma, so Jake was moved onto Elephant Ward to start treatment. It consisted of strong chemotherapy, lumbar punctures, blood and platelet transfusions and steroids.

In October, we had an end-of-treatment MRI and the comparison with Jake’s first scan was just amazing! The treatment had worked so well.

Before heading home, we went onto Elephant Ward and Jake rang his end of treatment bell. I felt like I was going to burst with emotion. All those difficult dark days, watching him go through all that pain; I couldn’t quite believe it was finally over. My Jakey, all better. He fought so hard throughout his treatment but overcame it with smiles and his cheekiness.

Jake really struggled in those first few months. He had just turned four and been thrown into hospital life. Without his vision, he was unaware of his surroundings and so would always look to me for reassurance. I had to stay by his side the whole time, cuddling him; he wouldn’t let me get out of his bed!

Our lives were turned upside down with Jake’s diagnosis, and then, during our first stay, the world changed.

During that time, I found it very hard to do anything with Jake. I had no experience of caring for someone without vision and he shut himself off from the world to try and cope with it all. He couldn’t enjoy anything.

But Alanna, our Play specialist, was so quick to adapt to what Jake needed and was just amazing with him.

I have nothing but praise for GOSH; the staff on Elephant Ward were amazing. On our down days they were there to listen, to comfort and to give advice. On our good days, they were there to have fun and share laughs. We formed friendships and even think of them as our second family.

COPING IN A PANDEMIC

People supporting and donating to Great Ormond Street Hospital Children’s Charity is so important to help the hospital continue the incredible work it does, offering families a lifeline with support services available to them and their child.

When the pandemic hit, the hospital became a lot quieter. I missed being able to speak to other parents and see Jake bond with the other children. We went from having numerous people coming to entertain Jake, to just once a day. But that once a day was vital.

LOOKING BACK

When things closed and visitors weren’t allowed, the Play team became our support. Jake loved it when they came to see him, as it was someone else besides me that he got to play with. They were excellent at spending time with Jake and offering him games, activities, arts and crafts, even music sessions via Zoom.

It was around this time when the pandemic hit that Jake began to see a little clearer. It seemed to get better every week. In his music therapy sessions over Zoom, he was able to see some of the keys on the keyboard. Then he started noticing colours again.

It took about two months for Jake’s sight to gradually come back, although it’s still not the same as it was.

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

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

We are sending you this magazine based on our legitimate interest to communicate with you. You can stop receiving it by contacting us at the address or phone number to the left, or emailing supporter.care@gosh.org. Find full details of what information we hold and how we process your data at gosh.org/privacy.

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A company limited by guarantee (company number 09338724).

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