In Touch - The Alder Hey Philanthropy Newsletter #4

In Touch Philanthropy Newsletter

Welcome

I hope you are enjoying the blooming flowers and occasional sunny day that this spring has delivered.

progress for our new Surgical Neonatal Intensive Care Unit. We are over the moon to have secured £2.5million in donations and pledges towards our £3million target –thank you for making this possible.

This year seems to be flying by and it’s hard to believe we are already in May. We are hearing that lots of you are enjoying some exciting trips as people start to catch up on missed travel plans from the pandemic.

You can also read about the work of our music therapists and play specialists, who tirelessly help to make the experience for our brave young patients as positive as possible.

It’s also been a busy time at Alder Hey. Children and young people have now moved into Sunflower House, our new inpatient mental health unit. On pages 6 and 7, you can read more about our plans for a programme of social prescribing activities, to give children the best possible start in life to manage their own health and wellbeing positively.

This newsletter includes an update on the

We are delighted to be able to offer access to our wards as part of our supporter tours once again. This is of course still subject to some restrictions, including mask wearing and limited numbers, but it is amazing to be able to show visitors the impact of donations on our patients and their families. If you haven’t visited recently, please do get in touch, we would love to see

you. We are holding exclusive private tours on Thursday 29 June and Friday 10 November. Please see page 8 for details of how to book your place and experience the true magic that takes place at Alder Hey.

Tracey Wilson Head of Philanthropy

Spotlight on Music and Arts Therapy

How long have you been at Alder Hey?

I have been working at Alder Hey for 11 years and during this time we have built up a small but perfectly formed Arts Therapies Team! We specialise in working with children who are struggling with their emotional wellbeing due to their complex physical health needs. Often in these cases their thoughts and feelings can be too ‘big’ to be expressed through words alone. We make a real and positive difference to their treatment journeys by taking a targeted and creative therapeutic approach.

Can you describe a typical day?

No two days at Alder Hey are ever the same! My morning could start with a visit to our neuro-rehabilitation ward, working with a child recovering from a brain injury. Following this I might attend a multi-disciplinary meeting about a patient or join with a psychologist to do a ‘Wellbeing Ward Round’, offering ad-hoc support and advice to our families. In the afternoon, I could have a session with an outpatient who is in remission from cancer, perhaps using song writing to explore their thoughts and feelings. As part of my role, I am also involved in research

and teaching, so I could round off my day by meeting with a colleague about a current project or by providing help and advice to one of our students.

What do you enjoy most about your job?

Each child’s experience is unique and one of the nicest things about my job is when someone allows you into their world. Exploring complex emotions can be extremely challenging, but I love that there is always lots of laughter in the work I do with our children and families. It is lovely when you make even the smallest difference. Also, on a less serious level, I adore the weird and wonderful music that patients introduce me to along the way!

What is your vision/ambition for arts therapy at Alder Hey?

Currently, we are only able to support a limited number of medical specialties, so I would love to grow the art therapy ‘offer’ across Alder Hey. I lead the Paediatric Music Therapy Network for the British Association of Music Therapy, so I also want to continue to raise the profile of the amazing work we do across the north west and nationally.

Melanie Thomas is a Music Therapist and Arts Therapies Lead for our Clinical Health Psychology Team.

Alder Hey’s Surgical Neonatal Appeal

Our family-centred Surgical Neonatal Intensive Care Unit will be the first of its kind in the UK, providing pioneering, world-leading neonatal surgical care, right here in the heart of the North West.

We are delighted to have secured nearly £2.5 million in donations and pledges towards our £3 million appeal target. This will be used to fund enhancements to our innovative new unit which are above and beyond core NHS provision and will keep families together when they need it most.

We are nearing completion of the underground service investigations after which the main build will begin. Behind the scenes, we have 23 new neonatal nurses working across Alder Hey and Liverpool Women’s to prepare for the new Unit and improved ways of working. Use of new, state of the art equipment will begin in the next 6 – 9 months to test and learn in the run up to completion, including an innovation project to finalise the use of technology within the new unit, working closely with clinicians.

Carter-Jay’s Story

Carter-Jay was diagnosed with gastroschisis before his birth in March 2023 at Liverpool Women’s Hospital. His parents had been seen by the surgeon and neonatologist, so they knew what to expect after he was born.

Gastroschisis is a rare condition which affects roughly 1 in 3,000 babies each year. It meant Carter-Jay would be born with his bowels on the outside of his tummy, and surgery would be needed to put them back.

Carter-Jay would be unable to have the operation at Liverpool

Women’s Hospital as operations like these can only be done in a specialised children’s hospital with full paediatric surgical facilities such as Alder Hey.

Within 3 hours of his birth, Carter-Jay was transferred from Liverpool Women’s Hospital to Alder Hey where surgeons were waiting to take the new-born to surgery. The operation was a success, but following an infection a couple of weeks later, he had to go back into surgery. Thankfully he was discharged from Alder Hey and is now recovering in the comfort of his own home.

Carter-Jay and his family are looking forward to booking their first holiday together, which they are planning for September.

Dad Karl said:

The new building will help set you up for life at home, getting used to all living together and caring for your little one.

“We are also so happy to have our boy as an inspiration to other mums and dads going through what he’s going through, and happy to show them that these little babies are fighters!”

Speaking about the new Surgical Neonatal Intensive Care Unit being built at Alder Hey, Karl explained that facilities such as family rooms would have eased their experience while Carter-Jay was in the hospital. He said: “We missed him so much at night, and a lot of times we had sleepless nights worrying about him.

“The new building can also help set you up for life at home, getting used to all living together and caring for your little one.”

Mum Sophie said:

Thank you to all the nurses on the neonatal unit for their close comfort and help throughout this tough time

For more information about how you can support our Surgical Neonatal Appeal please contact:

tracey.wilson@alderhey.nhs.uk

Giving our young patients the very best start

in life

The opening of our brand-new Mental Health Hub represents a very important step forward in transforming the lives of children. Sunflower House, our inpatient unit supports children aged 5-13 with the most challenging mental health conditions. The 12-bedroom unit, complete with an American diner, classrooms and calming private therapy spaces has set a new benchmark for residential mental health care. We recently welcomed our first young people, and both staff and children are settling well into their new home from home.

I am delighted to see our ambition of delivering state of the art facilities for children’s mental health is finally realised. Sunflower House is an amazing environment which will support our children with complex needs to become the exceptional and brilliant adults they are destined to be.

Lisa Cooper, Director of Community & Mental Health Services.

As we look forward to warmer months, we will offer a diverse range of programmes and activities both in the unit, and across the health care campus. These will ensure that children have the best possible start in life to manage their own health and well-being positively. Social prescribing activities provide young people with access to a range of non-clinical support and Alder Hey is leading the way in designing activities to support mental well-being.

The therapy garden within Sunflower House will provide children with access to outdoor space throughout the summer where they can learn, relax, play, and even lead on their own gardening projects. Our weekly Forest School provides outdoor education-based activities and exposure to nature designed to increase young people’s confidence, social and emotional skills, communication, and care for the environment. We’re looking forward to viewing nature slides and using natural resources to build bird boxes and bug houses! The NatureWell programme, a 6-week intervention using the outdoors and nature to heal and rejuvenate, is also encouraging older children and their parents to work together and develop parent-child relationships.

Our young people will be taking to the water and undertaking fishing coaching at North West Angling Academy along with their parents. This is a special way to increase family communication. Arts and creativity are an important model of therapy for our young people, and we’re excited that this summer, they will have the chance to take part in pottery and photography sessions. The arrival of a new ‘Dome’ called Base Camp will allow our outside art activities to continue through the winter months.

Our ambition and focus are to support as many young patients as we can from our health care campus. Our work with external partners to facilitate rich experiences means young people in our care have opportunities, life chances and the potential to lead safe and happy lives.

If you would like more information how you can support social prescribing projects at Alder Hey, please contact:

amanda.jones@alderhey.nhs.uk

Over 2,200

of the young people who needed us each week were teenagers

Over 4,000 oncology admissions in 2022

Our Snowdrop Team offered support to over 850 people from across the North West affected by the death of a child

Around 5,000 virtual appointments attended each month

7, 087children

7,087

Many children living with conditions with no known cure stayed with us, including 53 with Duchenne’s Muscular Dystrophy

Over 11,000 brave young patients from outside Liverpool needed our expert care each month

Taking action on childhood obesity

Childhood obesity is one of the most serious global public health challenges we face and levels in some parts of Cheshire and Merseyside are alarming. 70% of school children are classified as overweight or obese. Referrals to the Complications related to Excess Weight clinic, based at Alder Hey, have risen steadily over the last few years, and the COVID-19 pandemic has only exacerbated the problem.

This is even more concerning during a costof-living crisis. Our hospital is at the heart of our local community and day after day we are seeing families who are having to make difficult and heart-breaking decisions about whether they can pay their household bills or provide healthy food for their children. We are working tirelessly to tackle these serious health inequalities by taking action on childhood obesity to protect and promote healthy lives for all children.

Thanks to a successful partnership with the LFC Foundation, the MOVE programme provides community support for weight management for children and adolescents with severe obesity. The physical exercise and activity programme also supports children and young people with respiratory conditions such as cystic fibrosis, asthma, and endocrine disorders.

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She really looks forward to the exercise sessions, she talks about them the day before. Her mood since starting the sessions has improved and she seems much happier especially straight after a session. The programme is person-centred specifically for her which is great, and we really appreciate everything you do and the effect it is having.

The importance of keeping physically active has been recognised as being fundamental to our overall health and wellbeing.

Sadly, children and young people with chronic health conditions tend to have much lower levels of physical activity and due to the stigma associated with ill health, they often lack the confidence to access health and wellbeing opportunities. Through physical activity programmes like MOVE, we are committed to ensuring that every child who needs us is supported to manage their condition in a welcoming and inclusive environment.

If you would like more information about how you can support this project, please get in touch:

amanda.jones@alderhey.nhs.uk

When Hollyjoinedthe

mumtoldus:

Creating a safe sanctuary for our bereaved families

Our dedicated, specialist Snowdrop Team, support 170 bereaved families every year affected by the death of their child. They provide a 24 hour, 365 days a year response service to families during an extremely distressing time. Our Alder Centre who work alongside our Snowdrop Team, provides a longterm service to anyone, including staff, affected by the death of a child.

This includes long-term counselling, holistic therapies, therapeutic breaks and support groups.

We have two bereavement suites for families to spend time with their child in the days following their death in a safe and special environment. Families tell us how much this means to them, being able to make final memories together as they begin their bereavement journey.

Currently the suites are no longer creating the appropriate environment we wish to provide for our bereaved families. We believe our families deserve the best care at what is the most traumatic time in their lives. We want to be able to offer a sanctuary, where families experience a warm, welcoming,

and safe atmosphere as soon as they walk in.

The suites are not a mandatory NHS service and rely heavily on charitable funding. The care that bereaved parents receive in hospital following the death of their child is crucial. Alder Hey prides itself on attention to the small details alongside highquality care. Whilst no facilities can lessen the grief bereaved parents may feel, a well-designed bereavement suite can ensure families are cared for in the most sensitive environment possible. Our newly refurbished bereavement suites will be a comfortable and safe space for our families to grieve, and support our aim to provide a centre of excellence in bereavement care, in the north west and beyond.

If you would like more information on the bereavement suite refurbishment please contact:

amanda.jones@alderhey.nhs.uk

Home Design Service. Bedroom created for The Snowdrop Centre by Hannah & Mike

Lento Chairs

At Alder Hey, we provide the best possible environment for children undergoing treatment at the hospital. This includes investing in highquality equipment to ensure the comfort and safety of our patients. Currently, the hospital has limited access to adjustable, supportive, and pressure-relieving seating which limits our therapist’s ability to provide the highest possible experience for our patients. Additionally, hospital departments are having to pay high fees for rental chairs.

To improve the comfort of young patients, our hospital staff have proposed the purchase of Lento chairs for the wards. Over and above core NHS standards, these chairs are specifically designed to provide safe and comfortable seating for patients of all different ages and needs during their hospital stay.

We are supporting the hospital to purchase two fully-fitted chairs: a standard Lento for older and taller children and a ‘Little Lento’

designed for anyone under 5'2". These two chairs will allow us to support the widest possible range of patients regardless of their age, size, or individual requirements.

The chairs can be adjusted to accommodate different positions and angles, to suit the requirements of any medical condition or treatment. Good posture is vital for growing children and the strong backrests and adjustable leg, and armrests of the chair will ensure our patients of all ages and sizes will be properly supported. Other benefits of the chair include the easily cleanable material that prevents infection spread. The high-pressure relief gel cushions which will alleviate the discomfort of injured or unwell children who may need to sit for extended periods of time and protect them from the risk of pressure sores.

We have already seen the difference these chairs have made to patients, as we have had them on trial for two months now. These chairs have supported patients across surgical, and medical specialties, in increasing their time out of bed and offering them movement around the ward. Without these chairs, some of our patients would not have had this opportunity. This has made their inpatient experience a brighter one and has been a valued intervention.

Kelly Dwyer, Occupational Therapist

By providing a chair with such versatility, we can meet the needs of our more complex cohort of patients, offering them a better patient experience and more opportunities for engagement on the ward.

For more information about how you can support this project, please contact:

New Research Fellowship Roles

Alder Hey is known for the outstanding quality of services it delivers for the children and young people of Liverpool and the wider region. We’re not satisfied treating children using today’s medicines and technologies, we want to find the next generation of very best treatments, that are even more effective and safe.

Creating a brighter future for children

and young people

Research and innovation at Alder Hey means that we help two sets of patients: those in the present; and those who will benefit in the future from the advances which we bring about through new drugs, new devices and new technologies. Ensuring that Alder Hey continues to be at the forefront of UK paediatric research, requires dedicated, well trained, expert individuals. While Alder

Hey has many experienced researchers, until now we have not been able to commit to supporting the career development of talented individuals.

A way forward

Changes to the shape of medical training have markedly reduced the opportunities for individuals to get the required exposure to research and innovation in their roles. In response to this we are creating new career development roles to support the next generation of research leaders in paediatrics, a Career Development Fellowship and a Senior Research Fellowship.

Neither delivery of research or training in research methodology, are supported by core NHS funding, but are extremely important to ensure Alder Hey remains at the forefront of research for children and young people.

These new roles will significantly increase our capacity to deliver research, which evidence shows will lead to improved results for our

I firmly believe that our Researchers at Alder Hey are uniquely placed to be world-class in creating healthier futures for the patients we serve, and for future patients who may not have even been born yet.

Professor John Chester, Director of Research and Innovation, Alder Hey Children’s NHS Foundation Trust.

brave young patients. Additional resource also means improved safety and improved resilience of our research workforce, to cover for unexpected eventualities, such as staff sickness, and ensure the continued progress of studies.

This is our window of opportunity to improve the lifelong health of a generation. But we can only do this with your help to enable us to continue to drive this forward.

For more information about how you can support these new roles, please contact:

tracey.wilson@alderhey.nhs.uk

The power of play

Hospitals can be daunting environments. For Senior Health Play Specialist Pip Bradshaw, it’s her role to ease the anxieties a child may have about their procedure whether it be coming into hospital, a blood test, surgery, or treatment such as radiotherapy or scans.

Play and distraction therapies are powerful tools in helping to build a patient’s resilience and overcome their fears. Pip is part of a growing Play Specialist team that works across Alder Hey. We caught up with Pip to find out more. Based on Ward 3B Oncology and Heamatology for the last 33 years, Pip describes a typical day as “busy!”.

From checking for new overnight admissions and any planned procedures for the day to setting up the ward’s playroom. Pip is dedicated to ensuring her patients have the very best experience. Every child and young person are unique, with different needs and by building strong relationships with clinical teams and her patients, Pip can structure, facilitate, and supervise bespoke play activities whilst delivering diversional therapies and implement support for referrals.

“Activities, resources and toys are integral to the Play Service. Without these tools, our ability to encourage children to comply would be hugely impacted. We follow the Trust’s infection control guidelines, so ‘single use toys and activities’ are required in areas such as oncology where patients’ immune systems are suppressed.

All play staff use single use toys such as craft activities, small Lego kits and PlayDoh along with resources that can be cleaned thoroughly. Play-Doh can be costly but is essential and popular with our younger patients. It’s also a great preparation tool for cannulas and blood tests, encouraging the patient to squeeze it through their fingers improving access to the vein.

The number of patients requiring the support of the Play Specialist Team continues to grow and to meet their diverse needs, access to a variety of toys and craft activities that are suitable for all ages and development is required in every area of the hospital. It’s having access to a wide range of resources that can change the outcome of a procedure.

For example, a young child is extremely anxious about their blood test. He’s sitting on his hands and refusing to co-operate. By gaining his trust I find out he loves Dinosaurs and I have a box full of dinosaurs. It instantly creates a connection, reduces anxiety, and can make the difference between compliance and non-compliance.”

The vast array of sensory toys and equipment are used all day every day and are constantly being cleaned, checked for safety and disposed of and replaced, to ensure patients are kept safe.

Reflecting on the importance of her work and the wider team Pip believes “all children should have access to a Health Play Specialist. Play aids recovery and encourages positive outcomes.”

“Supporting a child, young person and their family on their journey from diagnosis and hospitalisation, I am constantly inspired by their ability to endure the many procedures and treatments. Offering diversional therapies and using play as a tool enables them to find their inner strength, coping strategies and build resilience to support them throughout their treatment protocol.

James’s Story

James’s story highlights the impact Pip and her team have on young patients here at Alder Hey. His goal was to undertake an MRI Scan whilst remaining awake.

Here is James’ mum to tell us more …

“Thanks to the invaluable support of Senior Health Play Specialist Pip, and the Senior Radiology team James achieved his goal. James acknowledged this huge milestone by saying ‘I won!’ while raising his arms to the sky as soon as he was out of the MRI Scan room.

Play therapy helped to normalised James’ hospital experience. It provided new ways to process difficult and distressing experiences with relaxation, desensitisation techniques and more importantly, it helped him cope with pain. Receiving ‘beads of courage’ was an important process in acknowledging his progress.

Although most children will be fine in the MRI scan while watching a movie, James realised he needed to ground himself with relaxing music. This was thanks to his new breathing exercises and closing his eyes. This therapy process increased his resilience to endure the MRI scan tunnel and its deafening and frightening noise. Our family’s experience drives me to advocate that every child should be supported with a similar provision because I am confident, as a parent, play therapy will continue to strengthen my son’s resilience. It will equip him with strategies and tools to accept and face his vulnerabilities.”