Alder Hey Children's Charity Impact Report 2020 by Alder Hey Children's Charity

How your generosity helps our patients, families and staff at Alder Hey Children's Hospital

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Thank you from everyone at Alder Hey Children's Hospital and Charity. Your support is creating bright futures for our brave young patients, like Eva above and Summer, front cover. We are delighted to share with you some of the ways you have made a difference this year.

This year we launched our 7 in 10 Children’s Mental Health Appeal and it couldn’t have come at a more important time 7 in 10 children do not access the support they need early enough. We know that by developing the facilities and services needed, Alder Hey can change the future of children’s mental health. We can provide the listening ear that is urgently needed in child-friendly surroundings where we can hold these conversations. Together we can help to build a brighter future for children and young people. Lydia was almost 16 when she was referred into community mental health services after visiting her GP, presenting with worries and behaviours that were constantly escalating. These behaviours made her feel very isolated, anxious and fearful. An appointment with a mental health practitioner and psychiatrist followed where Lydia began medication in order to get her to a point where she could then access talking therapies. She was diagnosed with OCD, anxiety and depression. Lydia says the diagnosis was a relief to her and marked the start of a long recovery. She believes she will always live with OCD but doesn’t believe her

“I was really excited to be a part of the campaign to promote mental health well-being for children and young people and the services available here at Alder Hey. Never Give Up stands out to me from this campaign, no matter how much you may be struggling - help is available. You are braver than you think, talk to someone and never give up.”

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diagnosis controls her. Lydia says she has learnt ways to live a more normal life, and was so inspired by her experiences at Alder Hey that she has now started training as a paediatric nurse.

2019 - The year Alder Hey Charity and Matalan set a new Guinness World Record! RECORDS® title holders! I’d like to say a massive thank you to everyone who came down and completed the run. It was so much fun and more importantly we have raised lots of money for Alder Hey.” Jason Hargreaves, Matalan CEO said: “We did it! What better way than this to commemorate an amazing campaign and support this incredible hospital? I am so proud and extremely grateful to everyone who helped us achieve a GUINNESS WORLD RECORDS® title.”

The World Record for the largest number of people joined together whilst completing a 5K was set by Aruna in 2017. Alder Hey’s inaugural ‘Run Together’ PJ fun run smashed the record with an amazing 215 linked supporters crossing the finish line. Staff from Alder Hey and Matalan joined fundraisers at Croxteth Hall and Country Park in Liverpool along with celebs such as Denise Van Outen, Mark Wright, Daniel Taylor and Shirley Ballas at the successful GUINNESS WORLD RECORDS® title attempt.

The Matalan sponsored GUINNESS WORLD RECORDS® attempt was part of the campaign for our annual Alder Hey and Matalan collaboration which was themed #TogetherforAlderHey.

Runners had to complete a 5km course, linked together with a rope attached to each person’s wrist. They completed the course in 1 hour 2 minutes and 2 seconds.

Since 2014, Matalan have raised a staggering £3,285,000 for Alder Hey with their annual collaboration selling a number of products including PJs, hats and scarfs.

Adam Dixon, Community Fundraiser at Alder Hey Children’s Charity said: “What an amazing day! It sounds so good to be official GUINNESS WORLD 5

Thank you for buying our campaign pyjamas – you helped us raise £559,000

As always, we were proud to feature some of our inspirational young patients as models for the 2019 Together for Alder Hey campaign. Meet some of the children who are thriving thanks to your generous donations…

One year old Lenny has Down syndrome. At six months old Lenny underwent open heart surgery at Alder Hey. He was expected to be in hospital for up to five weeks, but by the time he got to intensive care he was breathing for himself and four days later, the little fighter was home and well.

10 year old Abigail has cerebral palsy; a lifelong condition which affects movement and coordination. But thanks to an innovative operation performed by Alder Hey surgeon Ms Benedetta Pettorini, Abigail has been given a new lease of life.

Since his successful operation Lenny has surpassed his doctor’s expectations with his swift recovery and his smiley face lights up everyone’s day. Lenny is under the watchful eye of Dr O’Connor as well as A&E nurse Katrina who has cared for Lenny many times, from when he went into cardiac failure at 3 weeks old to looking after him when he was admitted for a chest infection.

As part of Abigail’s recovery, she undertook weeks of physiotherapy at Alder Hey working closely with the hospital physio team. When a clinical team works with a child for what can be weeks and weeks it’s hard not to become like family.

Six year old Jonah was diagnosed with a cancerous tumour on his kidney in June 2018. Once diagnosed Jonah had chemotherapy and then surgery to remove his kidney at Alder Hey; a centre of excellence for treating cancer. The cancer had also spread to his lungs but thankfully this was cleared with chemotherapy. Jonah then had to learn to walk again with the ongoing and tireless support of the staff on the ward including Play Specialist Pip and staff nurse Emily. “The staff at Alder Hey really got Jonah and us through some dark times. Emily the nurse was so kind to him; she even shaved his head for him and somehow made it fun. Pip the Play Specialist was always brilliant, again making everything fun and as ‘normal’ as it could be in those circumstances. All the staff at Alder Hey are amazing.” said Lorraine, Jonah's mum.

Poppy was referred to Alder Hey in the summer of 2016 when she was just one year old. She was diagnosed with congenital oesophageal stricture, which prevented Poppy from being able to eat solid food, choking any time she tried to eat anything other than pureed food.

19 month old Oscar was diagnosed with eczema in January 2019. His parents had noticed he was developing a rash on his face which was getting progressively worse, spreading across his body. He was referred to the dermatology team at Alder Hey where they knew exactly what to do. Oscar will have eczema until he is a teenager and the effects need to be managed with steroids, patches and regular moisturising.

Dr Sarang’s team diagnosed Poppy and she had her first surgery in 2017 followed by numerous monthly operations to stretch open the oesophagus.

Amy and Hannah are dermatology nurses at Alder Hey and have played a big part in Oscar’s treatment as well as helping mum Amy understand eczema and how to best manage it.

Poppy will require further surgery in the future and remains on different daily medications which she will continue for the rest of her life.

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Art Therapy at Alder Hey In 2019/20 Alder Hey Charity granted nearly £200,000 funding to support two clinical roles that use Art Therapies to support our patients over the coming years. This was supported by a donation of £21,060 from the Teapot Trust, a charity and loyal supporter of Alder Hey providing Art Therapy for children and their families living with chronic conditions. “Art Therapy proves how two people can communicate through art without the need for words. This is so important for Lucy as she communicates via British Sign Language. Even though Rachael can’t sign, art has no barriers – they are able to communicate perfectly. There are always giggles and excitement on a Friday afternoon and that’s because of the power of Art Therapy. We’re so grateful to Rachael, Teapot Trust and Alder Hey Charity for offering this service.”

The successful funding bid to the Teapot Trust has helped us to fund our Art Therapist role, held by Rachael Driver and based within Alder Hey’s Clinical Health Psychology team. Rachael provides emotional support for children, young people and their families in navigating the challenges that come from living with a medical condition. 15 year old Lucy has complex medical needs and is profoundly deaf. During the pandemic, she has benefitted from the support provided by Art Therapist, Rachel. Her mum Sharon said: “Lucy’s weekly online sessions have been invaluable during the unprecedented circumstances we find ourselves in during the pandemic. Rachael and Lucy have built a lovely relationship and Lucy looks forward to their appointments.

In addition to the Art Therapy role, Alder Hey Charity are proud to continue to fund our Music Therapist, Melanie Thomas in providing a creative approach to Clinical Psychotherapy for our young patients.

£250,000 provided the finishing touches to our new Alder Centre The new bereavement centre build was fully funded by your generous donations. This year Alder Hey Charity provided an additional £250,000 grant to fit out our home for bereavement services with warm, welcoming funiture and state of the art equipment. Our challenge is to make it somewhere people will want to return to. In our temporary home some of our counselling rooms are old consulting rooms, which can be triggering for parents who have lost children in hospital. We hope that our new building will be therapeutic in itself. Giving bereaved families a space where they feel warm and welcomed is so important because it tells them: we value you, we care about you.”

Our Alder Centre is designed with a ‘heart’ space at its centre that acts as a meeting place for families to form their own support systems. It has been furnished with comfortable furniture and a kitchen space, replicating the heart of a home. Counselling rooms are separate and private, following a similar theme of creating a welcoming and peaceful space for grieving families. We have also helped to equip offices for counsellors with sturdy, reliable furnishings, and installed bespoke privacy pods for volunteers working in our National Child Death Helpline office, which allow volunteers a private space for conversations which are often very difficult.

Delays due to COVID-19 have not only impacted the building programme but also the delivery of furniture, but we are delighted that our Alder Centre team moved into their new purpose-built home in October 2020.

Whilst the new centre was being built, counsellor John Lippitt told us “The Alder Centre is a place that nobody wants to have to come to, because it means the worst has happened.

One member of staff described the feeling of moving into the new centre

“From my perspective it has been quite emotional to be honest. I remember first seeing the plans in March 2017 whilst working in the old centre as a student and thinking ‘wow it would be amazing to work there’. Now actually working here as a member of staff, it feels like I have achieved a life goal; it has felt very powerful almost like the transition of me from my old self through to the new me like the butterfly breaking out of its chrysalis. I guess like the old centre transforming into its next incarnation, the future looks very exciting full of potential and possibilities.”

Annual Alder Centre Candle Service In 2019 one thousand people attended. There were readings, poems, songs and music during the service. Parents and families wrote special messages on remembrance leaves, which were placed by the Air Cadets on the Alder Centre tree. More than 500 children were remembered and their names displayed on a large screen and an array of candles were lit in their memory.

Your ongoing support allows us to continue to provide a grant for £8000 towards the annual Liverpool Cathedral Alder Centre ‘Light Up A Life’ Candle Service. Frank Reppion, Volunteer Coordinator for our bereavement centre, told us more about this special remembrance event and extends his heartfelt gratitude to everyone who helps to make this possible. “The Alder Centre Candle Service of remembrance is held each December for anyone affected by the death of a child, of any age. Planned and hosted by our bereaved parent volunteers, it is a special occasion when bereaved parents, siblings, extended family and friends are invited to remember and honour their children they have lost, at a time of year which is particularly difficult for them. The continued involvement of families, staff and volunteers demonstrates that parents and families greatly benefit by gathering with so many others and are comforted by remembering their children together, and they appreciate the ongoing support given by us as an organisation.

Special thanks are due to all those individuals, groups and families who have donated to the Alder Centre and Alder Hey Children’s Charity to support the bereavement work and events. Thanks are also due to those who directly supported the Candle Service: all the volunteers and staff of the Alder Centre who have been involved; Liverpool Cathedral; the Air Cadets: 2375 (Neston) Squadron ATC; Formby High School G-Force Gospel Choir; Wigan Believe Choir; soloist Marietta Daly, and Adlib for Audio and Video production. They all helped to make this a very special and moving remembrance service.” 10

Dazzling support from Wongs Jewellers Alder Hey is very close to the hearts of the Wong family. Long-term supporters and founders of Wong’s Jewellers, Mr and Mrs Brian and Susan Wong, personally benefitted from our Alder Centre service which inspired them to support our appeal. Fiona Ashcroft, CEO of Alder Hey Children’s Charity said: “We are so excited to have a special jewellery collection designed for us by Wongs Jewellers. Just like Alder Hey, the jewellery is something very special and we have had a lovely response. Very often, the impact Alder Hey has on a family will stay with them forever, and we hope that these beautiful pieces of jewellery will be treasured for a lifetime.”

The jewellery range has given the family an opportunity to raise awareness and funds for the new Alder Centre, a bespoke building designed by AHMM Architects and funded by Alder Hey Charity. Peter Wong, Managing Director of Wongs said: “This project has been a labour of love and we are overjoyed with the results. The collection, designed with love in our Liverpool city centre based workshop, see’s beautiful blue and pink enamel Oli elephants taking the form of pendants, earrings and charms, along with solid silver pieces with Oli’s statement stitching detailing. “We hope that anyone who has been on a journey with Alder Hey, including children, adults and the fantastic teams that work tirelessly to save lives, will find these pieces really special and meaningful.”

Our long-standing supporters Wongs Jewellers launched an exclusive jewellery collection in November 2019, which has raised over £6,500 for Alder Hey Children’s Charity so far.

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Mum and Dad said “We are so proud of Bethan and Oliver; they take everything in their stride and are fantastic children.”

Cystic Fibrosis is a genetic condition that affects mostly the lungs, but can also affect the pancreas, liver, kidneys, and intestine. A build-up of sticky mucus on the lungs can cause frequent lung infections and hospital stays.

The Oli the Elephant Collection has been especially created for the charity and includes a range of beautiful sterling silver jewellery featuring a motif of Alder Hey’s charity mascot Oli the Elephant. The limited edition collection launched with a publicity campaign featuring Alder Hey staff and patients modelling the unique jewellery and a wonderful launch party in our hospital atrium. The event included demonstrations by a Master Jeweller alongside craft activities for children and family to make their own sparkly creations to wear. Our Alder Hey Charity funded resident entertainer, Barrington, even stopped by to dazzle the crowds.

To manage the condition, Bethan and Oliver need to take 30-40 tablets every day along with other drugs, have regular physio and exercise and control what they eat. The risk of passing bugs to each other means that they can’t interact with other children with the same condition. Bethan spent the whole of summer 2018 at Alder Hey due to a lung infection, as well as four more hospital stays during the following year. Despite their daily struggles, they are fun loving siblings that enjoy doing the same things as other children their ages. Bethan loves spending time with friends, and Oliver is chatty and currently enjoys creating superhero accessories!

The four young people chosen to model the jewellery are all patients at Alder Hey and include siblings Bethan and Oliver from Wigan who both have Cystic Fibrosis.

V60 Plus Ventilator Thanks to the generosity of a charitable foundation who support Alder Hey Charity, we were able to fund a new piece of ventilation equipment here at Alder Hey called the V60 Plus Ventilator. This equipment is used to support the care of young patients with a wide range of respiratory conditions, including Cystic Fibrosis patients who have been unwell and need additional support with their breathing. Providing increased comfort for children and young people, as well as enhanced treatment management for our clinicians the V60 Plus Ventilator has been revolutionary in the care we can offer whilst reducing the number of patients that need to be moved to Intensive Care.

Jayne Peters, Ward Manager for our High Dependency Unit explained.

“The flexibility that the V60 Plus Ventilator offers means that we are able to care for increasing numbers of our respiratory patients on our High Dependency Unit, rather than escalating them to the Intensive Care Unit, which can be a frightening and distressing experience for our young patients and their families. This also allows us to free up space on ICU for patients who may require an enhanced level of care, including post-operative patients.”

This year we have provided funding for more heated cots, which are being used throughout the hospital by some of our most unwell neonatal babies Donations from Alder Hey Charity’s supporters including The Ursula Keyes Trust, The Green Hall Foundation, Peter and Debbie Moore and The Parry Family Foundation, have enabled us to buy heated cots to give neonatal patients the best care environment possible. The term “neonatal patient” is used to describe a baby within the first 28 days of their life. At this time, young patients’ health is extremely vulnerable, so it is crucial that they are cared for in a stable environment with a constant temperature. The heated cots, costing around £7000 each, are lined with warm, soft gel pads, which help clinicians to maintain a neonatal patient’s body temperature. The top and sides of the cot easily lift away which gives access to clinicians for tests and treatments. It also allows parents and families lots of room for skin to skin contact and to continue to love and nurture their new arrival.

We spoke to Lisa, whose baby Albie has benefitted from one of the heated cots following numerous surgeries after he was born. “The cots are great. I can get close to my little boy and his big sister Ruby-Mai loves giving him lots of kisses, which she can do because he’s in this cot. She just loves him so much and it’s important for her to bond with him too. The nurses are training me on how to look after him when I’m at home because of his complications and the cots make that transition so much easier. My confidence is increasing and hopefully we’ll be able to take him home soon.” Ginny Wallace, Ward Manager on our Neonatal Unit also described the impact that the heated cots are having on babies and families in their care:

“The cots are fantastic for our babies - we can regulate their temperature and adjust it as they grow, the sides come down so parents can stay close to their baby and do a lot of the things they would do at home. It makes that transition from hospital to home a little bit easier.”

We are proud to have funded £10,500 to purchase equipment to treat babies who have jaundice but are otherwise healthy in their own homes with the support of our Community Nursing Team.

Bilibeds from giving birth or after their c-section and want to be in the comfort of their own home. With the bilibed and biliblanket they can carry on with ‘normal’ life; they can hold and feed the baby whilst he/she is receiving treatment and so allows for better bonding in the baby’s first few days of life. And it means they’re not in an infectious environment, which is extremely important for babies as they haven’t yet built up their immune system. It also minimises family stress by not dividing the parents as only one parent can stay in hospital with the baby if they are admitted for phototherapy. We’re so lucky as we’re the first hospital in the North West to have this.”

Bilibeds are used to treat neonatal patients who have jaundice. Neonatal jaundice occurs when babies have too much bilirubin in their blood, which gives their skin a yellow tinge. While neonatal jaundice is easily treated it is crucial that babies receive treatment quickly. Jaundice is treated using blue light, through a method called phototherapy which can be performed at home using portable Bilibeds. Made up of a controller, a blanket to keep the baby warm and secure, and a bed which emits blue light, Bilibeds can be operated by families in the home. Regular contact with our outreach nurses means that families can feel certain that their baby is taken care of, while getting in plenty of time for love and cuddles.

Baby Joseph from West Derby is just 5 days old and has been using the Bilibed at home. Mum Eve said “It’s brilliant that we have this here in our home. I’m still sore from the stitches after giving birth so I’m so relieved we don’t have to stay in hospital, it makes such a difference. I feel much more comfortable at home and the outreach workers come out to us twice a day. The bed is really simple to use too so we feel really at ease and I feel like I can properly bond with Joseph. ”

The Emergency Department at Alder Hey sees around 500 babies each year with jaundice. Last year around 100-120 babies, mainly aged 2-3 days, were admitted for an average of 2-3 days with uncomplicated jaundice just to receive phototherapy treatment. Consultant, Dr Shirley Mulvaney, explains “The introduction of the Bilibed’s has a tremendous impact on new mums and families. Often mums are still sore

Our Nursing teams at Alder Hey continue to provide the highest level of care for all our young patients during the most challenging times

Funding equipment to help our nurses to provide the highest level of care

opportunity to return home, giving them invaluable peaceful and private time with their family, friends, and loved ones.

It is a painful reality that some of the children we treat here at Alder Hey require end of life care. Although we strive to make their time at Alder Hey as comfortable as we can, many families want nothing more than to be at home surrounded by their loved ones.

The Palliative Care pumps really are essential because they allow patients to return home where they are most comfortable. There they can be surrounded by their favourite toys, and they can spend as much time as they want with their family, friends and even their pets. At home both patients and families have peace and privacy, and don’t have to keep making the distressing trip to and from hospital. It brings so much comfort to everyone to be able to spend time as a family at the end, and that wouldn’t be possible without the Palliative Care pumps.

Palliative Care pumps make this possible, by providing children with vital medication outside of the hospital environment. About the size of a small book, the pumps are unobtrusive devices which, with the careful support of trained clinicians, can be used to deliver vital medication in the home. Thanks to a grant from The Bain Charitable Trust, we have been able to purchase ten Palliative Care pumps. This will provide children nearing the final stage of their treatment journey the

Your generosity has enabled our Physio team to help over 800 young patients at home John Gordon is one of our Physiotherapists here at Alder Hey, supporting the physical health of young patients with a wide range of conditions. Your generosity has enabled the Physio team to access Physitrack, an online prescription tool currently helping over 800 patients at Alder Hey. John told us how it works, the difference it is making now and explained the long-term benefit. “We have found that over the years, getting patients engaged with their exercises has been quite a challenge, this is not only the case in Musculoskeletal (MSK) Physiotherapy but Physiotherapy in all areas. Historically we would either write out the exercises for patients or try and draw their exercises, but we found that patients were coming back having either lost the sheets of paper or not remembering how to complete their exercises. With Physitrack we have been able to send videos of every exercise we need to give patients and monitor their compliance.

more regularly; this should lead to quicker recovery times and less appointments needed. We are also using the program with our Oncology patients who have reported that they feel more empowered and more confident when completing their exercises as they have a resource that they can follow, and they can also contact us through the program if they have any concerns.

We now have over 800 patients using Physitrack. Our initial feedback is that patients feel much more engaged with their treatment plans and they are completing their exercises

“During COVID-19 the use of Physitrack has been invaluable in being able to treat all our patients remotely. The funding from Alder Hey Charity will help us continue with this program and help us shape physiotherapy going forward.”

Ruth’s Story We would like to introduce Ruth, one of our inspirational fundraisers and a young patient who benefits from regular Physiotherapy sessions at Alder Hey Children’s Hospital. Born with Larsen syndrome, a rare genetic condition that occurs in approximately one in 100,000 newborns, Ruth has spent a considerable amount of time at Alder Hey and has already undergone 14 operations in her short life. Larsen syndrome affects the development of bones throughout the body. Symptoms include dislocations of the large joints, skeletal malformations, talipes (clubfoot), and breathing difficulties. Mum Rebecca says “When Ruth was born it was hard to imagine a future where she would be walking. When I looked at her tiny feet I wondered how they could fix her problems.” At seven months old Ruth was treated for her talipes using the Ponsetti method, a technique used to straighten the foot using manipulation and stretching. A few months later she had a hip spica plaster cast applied, under general anaesthetic, to treat her bilateral hip dysplasia by immobilising the hip, pelvis and femur.

Other surgeries that Ruth has undergone to date include the lengthening of a bone in her leg and a couple of ligament grafts. Dad John,, also has Larsen’s syndrome and he too was treated at Alder Hey, undergoing many surgeries, in fact he stopped counting after his 40th operation! Like her dad, Ruth will need many more operations and will undergo physiotherapy throughout her life. Fortunately though she loves coming into the hospital, particularly for her regular sessions with Dave the physio, where they work on building the strength in her legs. Rebecca explained, “I think the best bit for her is getting me all to herself when we stay on the ward! We’re so lucky to be at a hospital with the facilities to accommodate a parent.” “The staff have been amazing - from her consultants right up to the staff who serve lunch and the play specialists. They have a lovely bond with Ruth which makes it so much easier to keep her spirits up. When we come to Alder Hey we feel like one of the family.” “As a parent I feel the staff listen to me and take on my thoughts about her treatment with the greatest consideration. We hold a very special place in our hearts for Alder Hey, both the old hospital and the new.” In October 2018 Ruth’s resilience and determination reached new heights when, to say thank you to everyone who got her walking, she completed (along with mum), the Scouse 5K and raised a magnificent £530.00. This incredible effort resulted in her being awarded the Rainhill Rotary Foundation medal in December for her determination, spirit and fundraising. Ruth went on to finish the Alder Hey 5k in 2019 also. Ruth is looking forward to adding to her growing medal collection by doing more challenge events for Alder Hey Charity in the future.

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Your donations have helped to fund a new Echo machine that will benefit over 6000 young Cardiac patients The £95k Echo Ultrasound machine incorporates specific frequency transducers and specialist software; these allow the clinicians to non-invasively obtain and store multiple images and videos of a patient’s heart. This means that patients experience minimal or no discomfort through a routine Cardiac Echo procedure. such as Transesophageal Echocardiography and Stress Echocardiography.

The Echo Ultrasound machine has a 3D and 4D probe and image functionality which enables the clinicians to obtain and report complex echo cardiograms. This gives enhanced, higher quality images to guide the clinicians in diagnosis.

During Transesophageal Echocardiography, a small probe is inserted down a patient’s esophagus giving the clinician an in-depth view of the heart from different angles, allowing them to diagnose a patient condition.

The images allow the clinician to see blood flow to and from the heart, the structure and internal workings and timings of the patient’s heart and is also used to create a report of the patient’s condition. These images are sent to a database and inserted into the Electronic Patient Record (EPR) allowing clinicians to work quickly and effectively, including planning Cardiac Surgery if necessary.

The machine is also used in conjunction with exercise (often a treadmill or exercise bike) for Stress Echocardiography. This allows the clinicians to observe the workings and timings of the heart under the increased pressure of exercise.

Thanks to our generous supporters for funding the Whilst the Echo machine is often used for non-invasive advanced Echo Ultrasound machine that is really procedures, they are also used to perform other studies helping us to go the extra mile for children and young people. 19

Your donations help our lab scientists to work more quickly and effectively, identifying bugs and the best treatment for our young patients With your help, we granted £150,000 for specialist equipment that is making a huge difference to our young patients at Alder Hey. Christine Hill, Alder Hey’s Pathology Laboratory Manager explains more about what the equipment does and how it has changed the way they are able to work. “MALDI-TOF (matrix-assisted laser desorption/ ionisation – time of flight mass spectrometry) is a very sophisticated piece of microbiology laboratory equipment used for the rapid identification of bacteria (bugs) and fungi in patient samples. It is a rapid and

powerful tool because of its reproducibility, speed, and sensitivity of analysis. The MALDI can produce results within hours rather than days as with our previous methods, it also allows identification of a much wider range of organisms (bugs) here on site at Alder Hey. This means that patients can be treated much more quickly with the appropriate antibiotics, which in turn can lead to a reduction in the length of time a patient has to stay in hospital. The ability to identify more unusual organisms such as those found in Oncology and Cystic Fibrosis patients, is a particular advantage as currently these samples have to be sent away to a specialist reference laboratory which can take a considerable length of time.”

“We can’t wait to get started on planning the challenges with the children and young people”

Oncology Exercise Bikes Alder Hey Charity works closely with teams across the hospital in looking at ways to keep our young patients active during their stay. We provided a grant to our Oncology team to purchase three exercise bikes to help our young cancer patients. Physiotherapist Amillie White told us about their plans and how the equipment will help:

support of Youth Worker, Rob Sefton, to encourage physical activity and cycling on the ward. ”We can’t wait to get started on planning the challenges with the children and young people, providing them with opportunities to work as a team, build confidence and keep active whilst they are here at Alder Hey.” - Amillie White, Physiotherapist

“We are very excited about the opportunity to purchase three exercise bikes for our Oncology ward, thanks to funding from Alder Hey Charity. We have plans to create patient-designed challenges with the 21

Daniel’s Story For the first few years of Daniel Bell’s life, he was like any other toddler, full of energy, happy and full of life at home in Ormskirk, but doctors soon discovered Daniel had a brain tumour the size of a fist. At aged three, mum Rosalind and dad Colin, had noticed a change in Daniel’s behaviour. He wasn’t the same happy go lucky toddler he used to be. Rosalind explains “His personality literally changed. He was grumpy had lots of tantrums, was sick and went back to sleeping in the day too, which was the total opposite of what he was previously.”

Thankfully Rosalind recognised some of the symptoms of a brain tumour. Daniel was taken to Ormskirk A&E who quickly realised the severity of the situation and diagnosed Daniel with a brain tumour. Daniel was rushed straight to Alder Hey which is a centre of excellence for brain conditions. “It was like the bottom had fallen out of my world, our lives changed in a split second. We were told he needed to go to Alder Hey right away and we were blue-lighted to Liverpool,” says Rosalind. Once at Alder Hey, Daniel was taken straight to theatre where Neurosurgeon Ms Sasha Burns drained fluid on his brain during a 3 hour life-saving operation and the next day Daniel’s tumour was removed during a 9 hour operation by Professor Conor Mallucci, who featured in the BBC2 documentary Hospital. “Professor Mallucci told us that Daniel had a cystic tumour which was the size of an adult’s fist and there was a possibility of Daniel losing motor and mobility skills as the result of the procedure,” explained Rosalind. The operation was a success, helped using Alder Hey’s 3-T MRI scanner, a pioneering scanner which allows surgeons to scan the brain in theatre. Alder Hey is the first hospital in Europe to have this kit and it was funded entirely by donations to Alder Hey Charity. “It was 6pm when we heard that Daniel was out of theatre. We were approaching HDU to see him when we heard Daniel shouting at the nurses. I have to admit it was the best sound ever,” said Rosalind. “Professor Mallucci said that the operation ‘went perfectly’ and that he had successfully managed to remove the whole of Daniel’s tumour. We spent 6 days on HDU to recover and then went to the neuro ward for a week. The nurses were incredible,” said Rosalind. Rosalind added: “When we got the scans from Oncology which told us that no further treatment was needed it was an amazing relief. I cried a lot after that.” Daniel is now a healthy and very active little boy. “Daniel is really happy. He is a cheeky little kid and he loves being with his friends, playing Minecraft and raising money for Alder Hey Children’s Charity.” 22

Research at Alder Hey It is clear to see the difference you are making right now at Alder Hey Children’s Hospital; from state-of-the-art equipment for surgery, clinics and in the community to supporting patients’ mental health and wellbeing through music and therapeutic play. It is inspiring to see the huge impact your donations have on our brave young patients and their families. However, we know that it is vital to plan for the future. We harness the knowledge and experience of our clinicians alongside our university partnerships to understand health conditions and identify treatments for children, ensuring bright futures for patients far and wide.

One of our fundraising ambassadors, Archie Veale, explains why research is so important and why he and his family chose to get involved in research whilst he was a patient at Alder Hey. “Findings of previous research into life threatening illnesses and diseases has been of paramount importance to my recovery. The specialist care I received would not have been possible if those before me had not been involved in research. It is this mindset which encourages me and my family to continue our involvement in health science research – to help patients and children in the future. I am currently involved with steering committees for 3 medical trials, an opportunity which I would never have had if it wasn’t for my time at Alder Hey.”

This is why in 2019/20 we continued to fund paediatric research studies and provided a game-changing grant for £340,000 to increase the capabilities of our Research facility, funding researcher posts. Projects funded this year have included cancer research around brain tumours in children, £10,000 towards a study into Hirschsprung’s Disease – an area of specialism at Alder Hey, and £39,500 towards Endocrinology Research, including an obesity research project.

Archie graduated from university this year with a First in his degree in Prosthetics and Orthotics, his course choice inspired by his own experience. He told us that “Following my 5 months at Alder Hey and long road of rehabilitation thereafter I knew I wanted to be able to improve the lives of others and give back to the healthcare profession.”

When we became aware of COVID-19, we acted quickly and with your support provided £300,000 funding towards several research studies to understand the ways in which coronavirus could affect children, young people and pregnant women. Although research studies can be a long process, our donors’ commitment to this crucial area of children’s healthcare means that we can do and understand more for our young patients.

Thank you for supporting Research at Alder Hey, helping us improve the lives of inspirational young patients like Archie for generations to come.

Your support towards our previous fundraising campaign to build our RIBA Award winning Research Institute, the Speakman Building, has meant that research at Alder Hey has a bespoke home. This continues to enable research professionals, academics and clinicians to work effectively together and also means that we can engage with families and patients at Alder Hey to take part in research trials.

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Kick-starting Innovation at Alder Hey In 2019-20, Alder Hey Charity was proud to have provided a £200,000 grant to pump prime Innovation at Alder Hey. This has included funding for members of staff that will be crucial in developing innovative health solutions. These posts include a Senior Innovation Consultant, an Innovation Consultant, a Clinical Innovator and two Health Entrepreneurs who make up part of the team driving forward new ideas and technologies for the future of children’s healthcare. A Health Entrepreneur provides support to the innovation team by helping drive, deliver and manage numerous aspects of innovations processes. This ranges from helping members of hospital staff by identifying new needs, searching for potential technical solutions and working with partners to support the co-creation of new health technologies. The role has a positive impact on patients and families at Alder Hey simply because children and young people are at the centre of our work. Bringing in new health technologies and researching ways in which we can utilise new innovations that help improve the quality of life for children and their families is one of the biggest driving factors to why we do what we do. One of the biggest project achievements a Health Entrepreneur worked on was the Asthma Mapping project which won an award at the North West Coast

Research & Innovation Awards for Reducing Health Inequalities. Holly Brown, Health Entrepreneur explains how her role makes a difference. ‘My role is important as it allows me to make an impact in healthcare from a non-clinical background. There are lots of different things I enjoy about my role, but the main thing is seeing the work that we do and developments we take on make a difference to not only the children and young people we treat here but also to the members of staff. Alder Hey is truly a unique and wonderful place to work. I feel so privileged to work here as there is such a community feel between all walks of life at the hospital and this is what makes Alder Hey so special.’ 24

Asthma Music Project and SCORE We have a proven track record of funding projects to help children with asthma to keep active, healthy and build their confidence to access similar opportunities to other young people without a health condition. Thanks to the generous support of The Felicity Wilde Trust Fund, this year we provided funding of £4880 towards a music project for asthma patients. Focusing on breath control and coordination the aim of the project is to help to build their self-confidence, making children feel less isolated, and giving them something to look forward to.

to participate in, including music and dance. There was access to specialist pharmacy, psychology, and physiotherapy throughout the programme, to ensure that children were getting the support they needed. Participants were identified through A&E and clinic visits as patients with poor asthma control, who would most benefit from participation in this programme.

The project builds on the success of a multidisciplinary intervention on children with asthma called the SCORE project which we supported in 2018. The project allowed patients to pick a range of activities

The programme ran for 12 months and was extremely successful and popular with patients and families alike, with 41 children and young people benefitting from the sessions.

Many of the participants gave us feedback about what they thought of the project: Parents also told us what an improvement they saw in their children:

“I think it’s very fun, I’ll give it 10/10!”

“His confidence has grown … He was taught breathing techniques and lots of other different things I don’t think we would have got access to from elsewhere. To think how far he’s come in the last twelve months, both medically and confidently, he’s not the same little boy.”

“Sometimes when you have asthma you can feel like the only person who has it, but then you realise that you’re not, that other people are going through the same thing. It helps you mentally to realise other people are going through the same thing.”

Overall, the results from the project were overwhelmingly positive. Professor Ian Sinha told us that they had seen a vast improvement in many of the children and young people’s confidence, and that they had enjoyed the programme very much. Medically, there were reported improvements in quality of life, and reductions in hospital and A&E admissions in the participants. 25

Arts for Health at Alder Hey This year, we have continued our long-term support of Arts for Health at Alder Hey, through music, dance, performance and art. With a grant from Children in Need we have further developed the support we can offer children and their families, using music sessions to help them deal with the challenges of illness and hospital life. We caught up with Georgina Aasgaard, cellist at the Liverpool Philharmonic Orchestra and Arts for Health practitioner, about her work at the Dewi Jones Unit, our mental health inpatient facility. Georgina explains “I have delivered music sessions at Dewi Jones for quite a few years and since January, we have had weekly sessions. The consistency of the weekly sessions has really helped to build a relationship with the young people. From week to week, we make plans together. Each patient has a notebook; these can be used to write lyrics for a song, do some research on musicians or simply keep a record of the sessions. All sessions are child led, meaning that every week has a sense of adventure. In both individual and group sessions there seems to be a bit of a pattern: a time for listening and a time for creating.

one of us and somehow affect us in a direction which is our own and which is never right or wrong.” Children at the unit have individual timetables and care plans meaning that group sessions provide opportunity for the children to come together around a meaningful activity, share feelings and collaborate. Some of the ways that music can support our mental health patients include helping them to feel trusted and valued in a non-judgmental environment and being given the space, time and “permission” to have an opinion. It provides a sense of ownership whilst they develop new skills and enjoy learning and discovering new possibilities and ideas. The sessions, both individual and in groups, help the children to develop their social skills and emotional resilience.

The basis of my work in mental health units is to highlight within a group situation how one same piece of music can mean something different to every single

Georgina explains how the individual sessions are also useful in helping children to integrate with their peers.

“The one to one sessions can offer a “special time out” for the children who may be struggling in a group situation. This personal space and time often help the child to be able to join the group at a later stage.”

“The sound of live music on a ward can create a point of focus; it brings people together, we build trust, have fun and keep a sense of play.” Many of us will turn to music to help us relax, listening to our favourite songs and attending live music events. We talked to Georgina about the power of live music and the effect it has both or our wards and at the Dewi Jones Unit. “By just walking on a ward with a cello and a trolley filled with percussion instruments, young people gather that I’m bringing something different, something non-judgmental, non-medical. The sound of live music on a ward can create a point of focus; it brings people together, we build trust, have fun and keep a sense of play.” We often hear from staff in the hospital that the sound of the musicians playing, or howls of laughter coming from rooms when patients are creating comics with Comics Youth, can totally change the mood and lift everyone’s spirits. “When listening to music, young people seem to respond positively to the sound of live classical music offering a platform for discussions around imagery, storytelling and inner feelings and emotions. Live music without words has the potential to open up so many different emotions; it can bring back memories, take you to another place, in an instant it can change the way you feel, it can make you smile, it can make you cry, it can tell you a story.” 27

Collaborations that we have heard Georgina affectionately introduce to the children as “jam sessions” and “our band” are always led intuitively to the needs of the group. Watching Georgina use changes in the speed and volume of the music to flow with the needs of the participants is powerful and unique to participatory live music, just like each child’s journey is unique. Georgina sums up some of the main benefits of the sessions by saying “When creating music, children have an opportunity to explore different instruments, experimenting different textures, expressing feelings through different colours of sounds, finding their place in a group composition, listening to others and taking turns. My main aim in the music sessions is to find ways of connecting and communicating with the young people, listen to them and cater for their creativity in the best possible way.” Throughout the COVID-19 pandemic, donations have allowed us to continue to fund Arts for Health sessions, adapted for social distancing. Georgina continued to provide virtual sessions for the Dewi Jones Unit and recorded a special concert from her home that we also broadcast to TVs in patients’ bedrooms in our hospital.

Sound Music Project This year, Children in Need has generously supported ‘Sound’, one of our specialist music projects for families at Alder Hey. This project is part of our renowned Arts for Health programme, delivering participatory arts projects, including music, animation and dance, to patients at Alder Hey. ‘Sound’ brings fun music making activities to the inpatient wards, focusing on some of our most unwell patients across the hospital. Music making has proved to be extremely effective in improving our patients’ mental and physical wellbeing. It allows children and young people to be creative and communicate whilst giving them the opportunity to develop transferable skills. Patients look forward to their regular music sessions, making their own music whilst discovering and learning to play new instruments.

“I had fun. It stopped me from being fed up while having treatment and made me feel relaxed and involved. It took my mind off the treatment and the music was relaxing and I learned a new instrument.” - Mia, patient

Donations employ a Music Therapist to work in the Alder Hey Clinical Psychology team Your donations have funded the Music Therapist role here at Alder Hey, and in turn you have helped children and young people to express their thoughts and feelings, and work through the difficulties they face in a creative, accessible way. Melanie Thomas has held the role of Music Therapist since 2012 and told us more about how her work within the Clinical Psychology team helps our patients. “Sometimes young people do not have the language or cannot find the words to articulate exactly what they are feeling. Most approaches to support rely on verbal articulation of feelings to help other people to understand what is going on for a young person. Conversely, the use of music and art can provide a “window” to the inner world of the patient without the need for words. Over the last year, many of the young people I have worked with have used music and images to articulate feelings that have never been externalised. This can help them start to understand their emotions, explain the difficulties they are facing and avoid “bottling” emotions that can lead to a range of negative feelings and behaviours. One example includes using a “Desert Island Discs” framework to create a biographical soundtrack to the

journey of one of our long-term patients. When asked about a song for herself, the young person felt that “This is me” from the Greatest Showman film was the song that best represented her. When we looked together at the lyrics, we began to explore the meaning of the words specifically for her and uncovered deeper feelings relating to the accident she had been in many years before. She was able to use pictures to identify feelings alongside the song lyrics and from this was able to work through metaphor to this about some incredibly challenging issues.” Our Music and Art Therapists gather feedback from families and staff that clearly evidence the difference this service makes to the care Alder Hey can offer. “Having access to the Music Therapy Service has been invaluable to our Oncology patients. Creative therapies are such a helpful way of engaging with children and young people, particularly when they find it hard to talk about some of their experiences. It has been really helpful to joint work with the service to support some of our longer-term or more complex patients.” – Staff feedback from Oncology Department

“The care we have received has gone well above and beyond the call of duty. Our case has been a complex one but there has been true holistic family therapy. I genuinely couldn’t have got through this difficult time without the help and support of the Music Therapist” - Feedback from a parent

Play - featuring Pip and Jonah In 2019/20 we continued to support our Play Service to deliver child-centred activities and therapeutic play to young patients across Alder Hey Children’s Hospital. With your support, we funded £22,000 towards toys, craft materials and sensory play equipment to help engage with and bring smiles to children and young people throughout their stay. Play therapy is used to help children understand and cope with illness, surgery, hospital admission, treatments and procedures and is an essential part of the patient’s journey. One of the Alder Hey Play Specialists, Pip Bradshaw, works with young patients on our Oncology ward and has been at Alder Hey for nearly 30 years. Pip featured as a pyjama model and ambassador for our 2019 Matalan campaign alongside one of her patients, Jonah. She helped to distract Jonah through painful procedures as well as offering him and his family emotional support.

Jonah’s mum, Lorraine added, “The staff at Alder Hey really got Jonah and us through some dark times. Pip the Play Specialist was always brilliant, again making everything fun and as ‘normal’ as it could be in those circumstances. All the staff at Alder Hey are amazing.”

During the campaign Pip told us “It’s the patients and families that truly inspire me each and every day that makes my job enjoyable, rewarding and very special.”

With your support, we funded £22,000 towards toys, craft materials and sensory play equipment to help engage with and bring smiles to children and young people throughout their stay.

Alder Hey Children’s Charity is proud to grant funding towards the provision of a children’s entertainer This service is currently provided one day a week, divided into five sessions across the main atrium, wards and waiting areas, including A&E, pharmacy and X-Ray. If you have visited our hospital campus, you may have met Barrington, our resident entertainer and lifter of spirits! Barrington is an impressive professional entertainer with a chirpy personality, providing a service that reduces anxiety and makes potentially stressful hospital visits a happy event. He incorporates magic tricks and balloon modelling into his activities and is excellent at including parents whilst entertaining the children. We receive lovely feedback about him that demonstrates just how loved he is by patients, parents and staff here at Alder Hey.

Without the generosity of our supporters none of this could be possible. These people are truly the unsung heroes and real magicians who create the “real” magic. From the bottom of my heart I simply say thank you.”

Staff on our Oncology ward told us, “He is a breath of fresh air! The patients love him, he is entertaining, funny, always brings a smile to the patients’ faces. The parents get enjoyment from seeing their children smile too. He has a great rapport with the whole family and uses modern technology for engaging older children, for example a magic app on the phone. And of course younger children love to get a balloon!” Our Patient Experience team added “we really don’t know what we would do without him he keeps the magic alive throughout the Trust each time he visits”. Barrington told us how much working at Alder Hey means to him “It is difficult to put in words the benefits that I have seen happen when magic is weaved upon the wards and corridors of this magical hospital. When a little person giggles uncontrollably and an adult laughs, then a little ray of light breaks through even in the most darkest of moments. Creating magic offers a momentary respite and most importantly can create memories for parents and patients which is the most rare and precious gift to treasure. Alder Hey is the most incredible and magical place! It is truly a land of remarkable people and to be a small part of this amazing hospital is such a privilege.

Diabetes Family Fun Day Sharing experiences and supporting each other is so important to patients and families treated at Alder Hey and we are proud to fund experiences to help facilitate this. One example of an action-packed event that helped support our young patients was the Diabetes Family Fun Day, funded by a grant for £1800 from Alder Hey Charity. Anna Simmons, a Clinical Psychologist from the Diabetes team, told us about the event. “Thanks to the grant from Alder Hey Charity we were able to give our patients and their families the opportunity to attend a Diabetes Family Fun Day at KAPOW. All young people from the Diabetes Service were invited and we were delighted to take 14 patients, 28 family members and 7 staff by coach to Heaton Park in Manchester.

and celebration certificates handed out to all the participants. We gathered for a sociable (and very tasty!) lunch served from the park café before heading back to Alder Hey. A great time was had by all and the families loved seeing a different side to their medical team! A very big thank you from the families and the Diabetes Team for the funds that enabled this to happen.”

The event, organised by the Diabetes charity JDRF, included an inflatable obstacle course and there were Superhero goody bags with snacks, drinks and hypo treatment. There were also mementos of the day

Some feedback from attendees...

Comradery of the team and making memories with the Diabetes ‘Family’ and sharing experiences

Loads of fun and Positive vibes

Exercise which makes you happy

Well catered for all individuals and amazing goody bags

Cool event!

Thanks to our incredible Corporate supporters for their kind donations for hospital staff. With your help, we distributed care packs to all our dedicated keyworkers.

The COVID-19 pandemic

Throughout 2019/20, our donors have supported equipment, technology and experiences for our young patients, ensuring that their Alder Hey experience is positive, worry-free and fun, wherever possible. We believe that children should have opportunities to play and share the same experiences as other children their age without their illness being a barrier. time. Generous donations from our Trusts and Foundations supporters have funded an Employee Support Programme, including 24 hour counselling support and an information service to support mental health, wellbeing and resilience. Our Alder Hey Charity funded patient chat bot, Ask Oli, has also been adapted to support families with the latest health guidance and visitor information to keep our patients safe.

As the shape of daily life began to change at the start of the COVID-19 pandemic, we worked quickly to ensure that our patients and staff were supported to adapt to social distancing measures and additional infection control measures around the hospital. From individual patient craft packs, single use materials and toys to virtual music sessions and dance workshops, we worked with our hospital colleagues to optimise the possibilities and not be disheartened by the restrictions that enforced many changes.

By supporting us, you have supported our families and NHS heroes throughout this difficult time making it possible for us to grant over £1.9million towards equipment, projects and technologies to help Alder Hey thrive through the challenges faced. Feedback from across the Alder Hey NHS Foundation Trust has shown how grateful our hospital colleagues are for the commitment and care you have shown to them during 2020, as they continue to provide world- class healthcare for our children and young people.

Alder Hey Children’s Hospital has embraced the changes positively and used its expertise in innovation and technology to support the way we have worked throughout the pandemic. Donations from our loyal supporters have helped to fund innovative developments including a staff app to support our workforce whilst some staff have had to shield or work remotely as well as a chat bot to support staff with the latest updates throughout this challenging 33

Play during COVID-19 Throughout the pandemic, our Play team have used their creativity to adapt to new ways of working with our brave young patients. Helen Pinder, Therapeutic and Specialised Play Service Manager at Alder Hey explains how they have continued to deliver their inspiring service whilst faced with the challenges of COVID-19. “The team of play specialists & play leaders have continued to provide essential play activities for our children and young people during the ongoing COVID 19 crisis. Our children and young people seem to have one powerful tool that helps them cope with the many anxieties caused by the pandemic and being in hospital due to illness, that tool is play. Play helps build resilience so they can cope with treatments and life in hospital. The ‘new normal’ in every day life at Alder Hey has impacted on the way in which the play team delivers play and supports children being nursed in isolation. The play team has a wealth of expertise to share with the children and due to the many kind donations we have had the tools and resources to give them.

children to get creative whilst in isolation. We have also been able to provide lots of lovely new toys that the children can take home with them. The children have enjoyed getting crafty on the wards and this has encouraged lots of play interaction with their parent during their stay. They have helped the play team to decorate the wards with lots of fabulous artwork that has really lifted the spirits of the nursing staff. Some children have beautifully decorated canvas bags for the nurses to carry their uniforms to and from work. Play is a very powerful tool in the way children & young people cope with whatever life has to throw at them.”

The play team have made up single use activity bags full of lots of lovely art and craft materials for the

Donations from our supporters have enabled us provide the toys, materials and equipment needed by the Play Service at this challenging time. We would also like to extend our gratitude to our incredible Corporate supporters who have donated toys and gifts for our patients throughout the year.

Online Communication Aid for Speech and Language Therapy Donations to Alder Hey Charity have funded an Online Communication Aid for Speech and Language Therapy patients. The programme has provided appropriate, flexible support for the needs of a wide range of patients as well as delivering consistency between the help they receive in school and hospital, as well as the continuation of their care during lockdown. Emma Burgess, Speech and Language Therapist described some of the ways the new system, ‘Boardmaker’, is helping patients, families and clinicans at Alder Hey.

It has been useful when liaising with the special schools as most of them also use Boardmaker, so I have been able to carry over resources for home which are consistent for the children.

“I frequently use Boardmaker to make a range of resources for families. I have found the online option far more accessible and flexible than the CD software that we previously used, especially whilst working remotely during the pandemic.

I currently work with around 40 children and most of them have benefited from me having access to this system in some way. The online programme is more up to date than the CD software was in terms of the vocabulary that can be selected, meaning that we are able to keep up with children’s current interests and routines. Previously, I would often have to source pictures from elsewhere, such as internet searches or taking photos, and put them onto a template which was more time consuming.”

I have been using the programme to make visuals for comprehension and routines to be used by families. These have been particularly valuable during lock down for children who have found the change particularly challenging. I also use it to make various paper-based communication systems including Picture Exchange Communication Systems (PECS), choice and chat boards and full communication books.

“As so many of our children with communication and learning needs benefit from visuals to support their understanding and use of language, this is a valuable tool for the Speech and Language team.”

Eating Disorders Remote Monitoring Alder Hey Children’s Hospital has seen an increase in the number of young mental health patients referred to our Eating Disorders service (EDYS), especially during the pandemic. With thanks to a generous donation from Speedo Mick, Alder Hey Charity has been able to support more patients remotely, via a virtual monitoring service. Hannah Shaw, Assistant Psychologist within the EDYS team, told us how it has made a difference during the pandemic, as well as some of the ways it will help shape their service to help young patients and their families overcome other barriers that they may face.

multiple appointments they were required to attend for physical monitoring. This has acted as a barrier to treatment. The remote monitoring removes some of this pressure from families and the costs faced for petrol, public transport, time off work and parking.

“One of the biggest pro’s to setting up the remote monitoring is that our young people will not have to attend regular appointments at Alder Hey, face-toface.

We know that attending appointments can also be mentally challenging for many of our young people for several reasons. There are anxieties around attending appointments and a hospital in general which has been heightened in the current circumstances. Physical monitoring, particularly having to be weighed, causes a lot of stress for young people with eating disorders. Being able to do this from the comfort of their own home has the potential to reduce this stress.”

This is beneficial considering COVID-19, as it reduces the risk of them and their families contracting the virus or spreading it to staff/other patients presenting at Alder Hey. As patients with Eating Disorders are already physically compromised it is important that we are doing all that we can to reduce the risk and protect their physical health. Also, we have had young people with families who are shielding and unable to attend appointments for this reason or due to having symptoms that mean we must cancel appointments.

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Referrals to EDYS have also increased significantly over the recent months and remote monitoring reduces patient contacts for clinicians – which gives clinicians more capacity to provide support to more individuals.

Employee Support Programme Alder Hey Children’s Charity provided funding for additional NHS staff support when the effect of COVID-19 first started to be felt across the country. It was clear that hospital staff would require extra support throughout this difficult time. For many staff this experience will be unlike anything they have ever been asked to work through before. Not only was it physically stressful and demanding, but the emotional burden was high, especially when staff face the challenges that come with providing support for families of critically unwell children. Hospital staff also make the personal sacrifices asked of all frontline workers, putting themselves and their families at risk and juggling the care of elderly or vulnerable relatives and friends. Due to the complex and enduring nature of trauma, this crisis could have an impact on frontline staff for many years to come, and the implications of not intervening at this early stage could be devastating.

has meant that we are able to provide the right service to our staff, in the right place and at the right time. And as we move into the next phase of the COVID response, having Carefirst as part of our overall staff support offer will mean that we are in the best position to be able to build resilience in our staff so that we can all keep going together through the difficult winter months and into the Spring.”

The aims of the programme are to:

To support staff through this extremely challenging time Alder Hey Children’s Charity funded a Staff Assistance Programme proving enhanced emotional and practical support for hospital staff. The programme includes access to Carefirst, a comprehensive package of 24-hour support comprising of online, telephone and video counselling sessions and an information service, providing practical advice and signposting on a range of issues such as relationships and debt management.

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allow staff to easily access the support they need at a time and place convenient that is to them

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support staff to recognise when they need help and work towards developing their own personal coping strategies.

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The programme has been generously supported by our loyal donors including grants from Medicash, the John Laing Group and Merseyside Community Foundation. Dr Jo Potier, Associate Director of Organisational Development and Consultant Clinical Psychologist at Alder Hey, extends her gratitude to our supporters and explained why this support is essential. “When COVID-19 hit, we didn’t fully understand the scale of what we were facing both in terms of the physical impact of the virus and the psychological impacts. We did know, however, in early April that the services that we had available for staff support at Alder Hey would be quickly overwhelmed if we didn’t find additional resource. Thanks to the generosity of Alder Hey Charity, having access to an Employee Assistance Programme so quickly made an enormous difference to our existing services and to our staff. The additional capacity for both counselling and advice and guidance 37

help foster a wider culture of self-care across the hospital community.

Raees’s Story Equipment like the ECMO Machine that helped to keep baby Raees breathing has been funded by donations from generous donors to Alder Hey Children’s Charity. Our supporters really do make the biggest difference to brave young patients during the toughest times. This is the story of baby Raees, a complex cardiac patient who also contracted coronavirus - his future is bright thanks to supporters like you. When Raees Hassain was born in March this year, mum Farah had no reason to think that her new baby was anything but a healthy boy.

Cardiac specialists at Alder Hey noted that they had hardly ever seen a case like this; most babies would not have survived without treatment.

But at only 6 weeks old his parents became concerned when he began showing breathing difficulties. After a scan at Royal Oldham hospital he was referred to Alder Hey Children’s Hospital, and was diagnosed there with Transposition of the Great Arteries (TGA) which meant that both his two main arteries in his heart were the wrong way around. With Raees’ oxygen levels very low, he couldn’t breathe properly and his condition was life-threatening.

Incredibly, having been tested on his arrival at Alder Hey, Raees was also diagnosed with COVID-19. The combination of a very complex heart malformation, weakened heart function due to his late presentation as well as his COVID-19 diagnosis, Raees’s chance of survival was remote. In order for him to even survive that day, Alder Hey cardiologists urgently needed to perform a procedure called a septostomy. This where cardiologist interventionists create a small hole in the wall of the heart to allow the blood to mix in his heart and improve the amount of oxygen circulating.

Mum Farah said: “I was completely shocked and numb when the doctors at Alder Hey told me he had TGA and with how ill he was. I had no idea that TGA even existed and so it was so unexpected. Our whole world was turned upside down.” 38

The procedure was a success, but because of the COVID-19 infection, cardiac surgeons could not perform the complicated surgery needed to correct his heart until he had stabilised and was strong enough for the ordeal. As his oxygen levels continue to be dangerously low, Raees was put on ECMO; a heart lung bypass machine, to keep him alive until he was strong enough to have his lifesaving cardiac surgery.

The operation was a complete success and although he needed to regain his strength and recover from surgery baby Raees was over the worse. Rafael said: “Our extraordinary team of doctors, nurses, cardiologists, anaesthetists, perfusionist, ward and theatre teams who worked together in carefully planning and delivering his treatment. I am very proud of every single member of the different specialities who have been instrumental on the success of saving Raees’ life.”

Farah said: “It was a life or death situation. Even the doctors said the odds were against us and when a doctor says something like that to you, you have to be prepared for the worst. At this stage, we were just trying to keep him alive.

Raees spent a number of weeks at Alder Hey recovering but is now at home in Rochdale and getting to know his big brother, three year old Ayaan. Farah says she would like to thank everyone involved in helping to save Raees’ life.

“As he had COVID-19 we couldn’t even touch him without our gloves on, we were in full PPE when around him. It was such a difficult time.”

“I am so thankful for all the doctors, nurses; everyone at Alder Hey especially Mr Guerrero and the NHS. They have all been there all the way, even when I couldn’t be there. They have done such an amazing job. And we can’t thank them enough. Raees has been through so much and come out stronger for it, he is a real soldier. Doctors say there is no reason he can’t do anything he wants to. He can climb mountains, be a racer, whatever he wants. He has a life now.”

Nine days after coming to Alder Hey, brave Raees had beat COVID-19 but his life was still dependent on the ECMO machine, funded by Alder Hey Children’s Charity. Raees’ only option to was to undergo a lifesaving, high risk operation to repair his complex heart malformation which was planned and led by the Chief Cardiac Surgeon at Alder Hey, Mr Rafael Guerrero. Mr Guerrero said: “Baby Raees had one of the rarest forms of TGA which together with a severe damaged function of the heart and having COVID-19 infection make him an extremely rare and very sick and complex baby. “Performing this highly complex operation to correct the heart malformation was the only chance for baby Raees to survive and for his family to have the opportunity to see their baby growing up.” The operation had a less than 50% chance of survival and in addition there was all the unknown risks related to a baby having been infected with COVID-19. Farah said: “We had no choice really. If he doesn’t have this operation, he is going to die. If we do go through with it, at least he has got a chance. And that’s all we wanted.” Raees’ operation took over 6 hours to complete. “We just prayed and prayed all day for a successful operation. It was such a daunting experience having to wait that long. Each second felt like 100 years.”

Together for Alder Hey In December 2019 we opened our very first charity shop selling pre-loved and donated goods, located in Old Swan, a stone’s throw from our amazing hospital.

Between December 2019 and March 2020, our shop has raised a fantastic £72,665.36 for brave, young patients at Alder Hey Children’s Hospital.

Thank you to our incredible team of volunteers and to every one of our supporters who has passed through our doors. You are all amazing!

In 2019/20 our amazing supporters answered our call to ‘Join Us Join In’ at our bespoke events, from our annual Oli Safari Walk to life-changing overseas challenges.

Our inspiring fundraising family collected sponsorship and held their own events and activities to help make a difference to young lives.

Together, we raised an astonishing £468,656 for brighter futures for our young patients through our bespoke events.

Events are a vital source of fundraising income for Alder Hey Charity and the COVID pandemic had a huge impact on our ability to raise money this way. Thankfully, many of our fundraisers found exciting ways to raise money through virtual events and challenges including our #MillionMiles campaign.

Accounts Summary Total Income £4,720,000

Total Expenditure £4,250,000

£ Income

Expenditure

£915,000

Campus

£1,056,00

Corporates

£690,000

Research

£223,000

Groups

£104,000

Medical Equipment

£695,000

In Memory

£80,000

Courses and Training

£69,000

Grants

£414,000

Magic

Legacies

£253,000

Cost of Fundraising

Events

£838,000

Other

Lottery

£620,000

TOTAL

Trading

£700,000

Investmen

£103,000

Individual Donations

TOTAL

People

£1,111,000 £1,011,000 £85,000 £4,250,000

£4,720,000

23 Employees | 12 Trustees | 35 Volunteers

Thank you for being by our side throughout this challenging year. From our Alder Hey family to yours, we wish you health and happiness. 43