Impact Report May 2015 â€“ September 2017
Here for the children of Wales, today and tomorrow.
For every £1 the Noah’s Ark Charity spends, we raise £5.
Over 81p in every £1 is spent directly on supporting the children’s hospital.
A message from our Chair
Facts and figures
Our mission and goals
Supporting capital development projects
14 16 18 20 22
Medical equipment Radiology Critical Care Cardiology Ophthalmology
24 25 26 28
Patient and family support Emergency Parent Packs The Noahâ€™s Ark Garden Play specialist team
29 30 32
Direct patient care Childrenâ€™s Assessment Unit Hydrotherapy pool
Staff and professional development
A thank you to our supporters
A message from our Chair Eddie Hayward OBE
Chairman of the Noah’s Ark Charity The Noah’s Ark Charity has come a long way from its initial purpose to build a children’s hospital for Wales. The world class paediatric facility we have today stands as a permanent testimony to what we can all achieve by working together. Since opening the doors to both the first and second phase of its development, the Noah’s Ark Children’s Hospital for Wales has provided specialist and life-saving care to hundreds of thousands of young patients. As caring for those patients is a daily responsibility for the hospital, supporting that care remains a daily mission for us. The Noah’s Ark Charity responds to urgent need across the hospital, funding innovative life-saving equipment and investing in technology that helps to train the clinicians of tomorrow. We also provide funding for patient and family services that help alleviate anxieties, support parents and engage children. In 2016 we launched our Noah’s Ark Charity Tiny Lives Appeal to support the development of the neonatal unit at the University Hospital Wales in Cardiff. We are striving to raise funds to help save the lives of the most vulnerable babies as well as provide facilities that help make the experience for parents at the unit more comfortable and less stressful. We have met some wonderful families who have kindly shared their experiences at the neonatal unit with us and we are very thankful for the response from our supporters so far.
A new era The Noah’s Ark Charity has a history of very successful major capital appeals and we will always be proud of what we have established for the children of Wales. Our history can be found on our website www.noahsarkcharity.org Since the second phase of the hospital opened in 2015, it is clear that we have entered a new era. We have become an integral part of the hospital fabric, supporting both capital developments like the new neonatal unit and service delivery.
We are far more involved in developing services, helping the hospital maintain its status as a centre of excellence. Through our grant-making programme, staff at all levels can now have a positive impact on their service area by directly requesting funding for anything from small items that transform a patient’s experience to pioneering medical equipment that will transform a patient’s life. We rely entirely on voluntary income and thanks to our supporters, in 2016 alone, we were able to provide the hospital with funding amounting to £906,939. As a small team with limited resources, we welcome the support of communities and businesses around Wales to help us continue to work in partnership with the health board, hospital and staff in providing patients and their families with the best possible support and care. We will always strive to help provide facilities and services that are world-class, embracing progress in technology and innovation. On behalf of the Noah’s Ark Charity, I would like to warmly thank all those who have made everything enclosed in this report possible. We look forward to our continued partnership in this next exciting era. With your help, we will continue to enhance the experience of families and, most vitally, improve outcomes for children.
Chair of Cardiff & Vale University Health Board The Noah’s Ark Charity works alongside the health board and Welsh Government to help provide the best quality facilities, treatment and care for many thousands of sick children from across Wales. It assists the health board by helping to fund life-saving equipment, investing in cutting edge technology and helping us to fund patient and family services to make patients feel at home when in our care. With recent campaigns focusing on providing much needed equipment for the new neonatal unit and investment in a therapy garden, we are extremely grateful for every contribution from Noah’s Ark Charity fundraisers. The charity has continued to work with our clinical teams to support them through the Noah’s Ark grant making programme. It also provides the health board with a substantial amount of financial support each year, which enables us to purchase specialist clinical equipment such as ventilators, scanners and audio visual equipment and fund play specialists who help the children to have much needed fun, laughter and distraction while in our care. I’d like to thank the Noah’s Ark Charity and their fantastic fundraisers for their hard work and commitment to the children of Wales.
less children have undergone general anaesthetic during MRI scans thanks to the child focused improvements we have made to the Radiology Department. This not only means a cost saving for the hospital but a far less traumatic experience for young patients. We have approved grants to the value of
more children are now seen at the Paediatric Ophthalmology Clinic.
since launching the programme in Spring 2016.
children have received rehabilitation in the Noahâ€™s Ark Hydrotherapy Pool.
Emergency Parent Packs have been distributed to families in need.
children have been treated at the Cardiology Unit.
food parcels were given to families in hospital over the 2016 festive period.
The charity has supported the play specialist team in delivering close to
hours of play therapy to more than 100,000 children.
children have undergone scans using the purpose built MRI scanner.
seriously ill children have been cared for on the Paediatric Critical Care Unit.
These charts illustrate the sources of our income and how that income has been spent to support children and families and the Noah’s Ark Children Hospital for Wales.
Income 2015 - 2017*
Expenditure 2015 - 2017* Patient and family support (£1,211,418) Medical equipment and patient care (£917,251) Environment, facilities and capital projects (£321,085) Innovation (£14,950) Staff and professional development (£7,258) Other (£865)
Total £2,472,827 Donations (£1,984,326) Legacies (£481,539) Trusts (£350,392) Recycling (£159,642) Trading (£68,159) Total £3,044,058
We expect to release a further £884,577 by the end of 2017 to cover commitments in the following areas: Patient and family support (£38,491) Environment, facilities and capital projects (£541,951)
Medical equipment and patient care (£262,781)
Innovation (£27,190) Other (£4,984)
Staff and professional development (£9,180)
*These figures are extracted from management accounts data for the period May 2015 – Sept 2017. Full audited accounts for 2015 and 2016 can be found at the Charity Commission or on our website www.noahsarkcharity.org
“The team here don’t just make being in hospital bearable for the children, they make it fun and there’s nothing more precious to me than seeing a smile on Eva’s face.” Lauri, Eva’s mum 8
Our mission and goals We believe passionately that all children in Wales should get the best possible hospital care.
The values that guide us
Working closely with, but independently of the NHS, we aim to help the Noah’s Ark Children’s Hospital for Wales become a centre of excellence in paediatric care.
We strive to support the work of staff by providing the best medical equipment and facilities.
Our mission is to ensure that the hospital’s dedicated and committed practitioners have the equipment and facilities they need to secure the best outcome possible for their young patients. We also want children and their families to feel supported and cared for, in what are often very challenging times. This is why we invest in services designed to enhance and enrich patient experience.
What we fund • Capital projects • Innovation
To offer hope to children and their families from across Wales.
• Medical equipment
• Patient and family support
That compassion is at the heart of everything we do.
We work together as an extended family; working in partnership with the hospital, community, patients and their families. We support the whole hospital and all of its patients through our fundraising. The Noah’s Ark Charity receives no government or NHS funding. We rely entirely on voluntary donations and gifts in Wills.
• Direct patient care • Staff and professional development
Supporting capital development projects The history of the Noah’s Ark Charity is rooted in the capital appeal to build a dedicated children’s hospital for Wales. For more than 17 years, we have worked hand in hand with the health board, Welsh Government and the people of Wales to create a facility which provides the best care possible for children and young people. Both key phases of the children’s hospital are now complete and our work to support it is diversifying in many exciting ways. However, with a mission to help provide and maintain world class paediatric care at our core, we continue to support capital initiatives, this time by raising funds towards the new neonatal unit.
Tiny Lives Appeal The Noah’s Ark Charity Tiny Lives Appeal aims to raise £1 million to fund life-saving equipment and facilities for families as part of a project to develop and expand the existing unit, which currently treats around 560 babies each year. Helping to launch the appeal in November 2016 was baby Tilly, who celebrated her first birthday on the same day. It was a milestone her family feared she might never meet after mum, Katie, went in to labour nearly four months early. Despite every effort to stop the labour, Tilly was born at just 23 weeks and six days gestation, a day younger than when premature babies are considered viable for life outside the womb.
Katie said: “Like many premature babies, Tilly
had to overcome a lot of hurdles in the first few weeks of her life and for what felt like forever, we just lived from one minute to the next with no idea of what to expect.
We’re so lucky to have Tilly home and well now but I wanted to support the appeal for all the other families who are going through what we went through. The care Tilly received on the unit was incredible and I want to do my bit to make sure that more parents feel the joy that we did when we finally got to bring her home.” The money raised through our Tiny Lives Appeal will be spent on specialist life-saving equipment like ventilators, which support premature or critically ill babies to breathe and a mobile X-Ray machine which allows doctors to diagnose and respond quickly to a vulnerable baby’s ever changing condition. It will also help parents facing weeks and months of huge worry and uncertainty by funding items like video monitors so that mums recovering from birth are able to see their babies in the anxious hours before they are reunited. It will also support the provision of overnight rooms where parents can become accustomed to caring for their precious infant before leaving hospital. By supporting the health board and Welsh Government with the redevelopment of the neonatal unit, our Tiny Lives Appeal will play a part in ensuring the best treatment and outcome possible for premature and critically ill babies across South, Mid and West Wales.
Innovation Innovation is vital in the world of medicine. Not only is it instrumental in developing new treatments, it can improve care and patient experience and reduce costs. The Noahâ€™s Ark Charity invests in fresh and innovative approaches, helping to ensure that patients are able to benefit from the latest developments in medical care.
MRI DVD system Since funding the MRI scanner and Radiology Department in 2015, we have continued to support improvements within the unit, most recently with the installation of an MRI compatible DVD system. The system allows young patients to watch films or programmes from any angle within the scanner and has already proved very successful in reducing patient anxiety at other childrenâ€™s hospitals. Since the system became operational in November 2016, the radiology team at the Noahâ€™s Ark Childrenâ€™s Hospital have seen equally positive results. These are best demonstrated in the increased reduction of children needing a general anaesthetic to undergo scans. This is great news both for the individual patients who need far less medical intervention and for the department as a whole. Scans under general anaesthetic require a great deal more medical intervention and often require a child to be admitted. They are also more time consuming and expensive, so the DVD system our supporters have helped to fund is also reducing waiting lists and costs. You can read more about how the DVD system helps young patients like Neve (opposite) on page 17.
Telemedicine room facility In 2016, the charity approved an application from the cardiology team to fund telemedicine equipment which enables specialists to remotely review both live and recorded scans and images. With it, consultants are able to diagnose and advise on the treatment of children from further afield who would otherwise need to travel to Cardiff for a diagnosis. The equipment will help local medical care teams from across the region to develop their practical emergency care skills and receive teaching and training remotely to consolidate that knowledge, helping to improve the standard of care for children throughout Wales.
Medical equipment Loyal to our mission to help ensure world class care for patients at the Noah’s Ark Children’s Hospital for Wales, we continue to fund equipment that enables practitioners to treat more children, diagnose with ever greater accuracy and treat more effectively.
“Prior to receiving the new ultrasound machine for hip scanning, we only had access to a borrowed one for a few hours, meaning that we could just scan around ten babies a week. Now we’re able to see around 24, so that babies are being seen quicker and younger. Diagnosis and treatment before six months can mean the difference between wearing a harness for a few weeks and far more invasive procedures like surgery. The new ultrasound machine has made a huge impact on our ability to provide the best form of treatment, meaning that children are able to go on to develop unhindered.” Clare Carpenter Consultant and Orthopaedic Surgeon
Impact Report 2015/17
Our new grant making scheme As well as responding to direct requests from the hospital and acknowledging the specific wishes of our donors, we also operate a grant making programme which was launched in Spring 2016. The scheme is open to all staff connected to the Noah’s Ark Children’s Hospital for Wales, whether they are based within the hospital itself or out in the community. Applications are considered on a quarterly basis. Here are just a few examples of the grants we have approved for medical equipment to date:
Orthopaedic Ultrasound Machine Supporting prevention through early detection Developmental Dysplasia of the Hip (DDH), sometimes referred to as ‘clicky hips’ affects between one and three percent of newborn babies. Undetected, it can lead to osteoarthritis and is one of the most common reasons for hip replacement surgery later in life. Early diagnosis and treatment is the most effective way to treat DDH. Thanks to new national guidelines involving newborn checks and screening for those with risk factors like prematurity, more babies than ever are receiving early care. In order to accurately diagnose hip dysplasia, babies with potential problems need to undergo an ultrasound scan so that, if DDH is confirmed, treatment can begin as quickly as possible. As part of our grant programme, we have funded a dedicated ultrasound machine for the paediatric orthopaedic department. This means the department can now assess more than twice as many babies per week, and go onto provide treatment swiftly when DDH is diagnosed.
AV system for operating theatres Investing in the surgeons of tomorrow
Fetal Echocardiograph Machine Saving lives, improving outcomes
With the huge help of one private donor, we were delighted to fund the entire suite of operating theatres at the Noah’s Ark Children’s Hospital for Wales. Now, thanks to the approval of a grant application, we will fund an audio-visual system that allows operations to be relayed to the teaching room. This helps to reduce the number of staff within each theatre, therefore managing the risk of potential infection. It also enables a full group of trainees to watch the detail of an operation from immediately above the operating site. We are thrilled to support our surgeons of the future.
This new state-of-the-art machine includes the latest technology to detect heart defects in unborn babies – saving lives, improving outcomes and giving parents informed choices about current and future pregnancies. The Fetal Anomaly Detection Service is provided for the whole of Wales.
Radiology Following an ÂŁ1.8 million investment by the Noahâ€™s Ark Charity, the Paediatric Radiology Department opened its doors in Spring 2015 and now sees over 1,000 patients a year. Its dedicated MRI scanner helps diagnose and monitor children with a number of conditions, from cancer and neurological issues to musculoskeletal injuries.
Prior to its opening, children underwent scans in the same facility used by adults within the University Hospital of Wales, which could often mean a longer wait to be seen. An MRI can be a daunting experience for anyone, let alone a child, but the new paediatric facility was created entirely with the needs of children in mind. The purpose built MRI scanner which was funded by the charity, is smaller and shorter than a normal machine, making it appear less daunting for smaller people. The compatible DVD system has resulted in a dramatic decrease in patients
needing general anaesthetic to undergo scans, while the dedicated play specialist we help to fund, allays fears and addresses anxieties. The charity continues to support the department in its aim to provide the best service possible to young patients. In 2016, the charity also funded an MRI compatible pulse oximeter. This is a device that enables radiologists to monitor children whose conditions are unstable more closely and effectively, ensuring the maximum level of care to the most unwell of patients.
Neve’s story Neve was only three when she was diagnosed with a tumour in her middle brain. Since then she has undergone several long periods of chemotherapy and countless MRI scans to monitor the tumour’s development. It was an experience that Neve used to dread before the children’s radiology department opened in 2015. Neve’s mum said: “An MRI scan is a daunting thing for even an adult to have to go through so I can’t imagine what it feels like for a small child.
The rooms we used to go to were dark and the machines were big, and having to stay still for so long without anything to comfort or distract her was too much for Neve. When she was smaller she was often given a general anaesthetic to
have her scans but since the opening of the new children’s MRI scanner, she hasn’t needed to. The rooms are bright and there are toys and lights to occupy her. The scanner is smaller, so less daunting, and the inbuilt DVD system not only means that she has something to distract her, but means she has something familiar from home to give her comfort. It’s vital for Neve to have MRI scans but now she doesn’t get anxious in the build up to them and I don’t have to worry about her having another general anaesthetic.”
Dr Susan Morris, consultant paediatric radiologist, said: “There has been a huge improvement
in the service we’re able to provide to children since the opening of the new facility. The department sees children of all ages with all types of conditions, many of whom have to return to us over several years. To see them do that without fear is priceless, but the improvement in patient well-being translates directly in to an improvement in clinical outcomes too. We can now scan children as young as three without a general anaesthetic, something that was practically unheard of before. More scans are completed successfully and the results are clearer, all because the children are comfortable, entertained and relaxed.”
Critical Care The Paediatric Critical Care Unit has treated more than 1,267 children since its opening in May 2015. It is the only paediatric unit of its kind in Wales, providing intensive and high dependency care to the most critically ill of children from South, Mid and West Wales. The Noahâ€™s Ark Charity provided ÂŁ185,000 for key pieces of equipment during the development of the new unit, including ventilators, monitors and a DR X-Ray machine. Thanks to two tribute funds, we have since been able to fund a baby warmer and an oscillator, which provides the highest level of ventilation support to the most unwell of patients.
As a charity we are wholeheartedly committed to supporting the life-saving work of this unit in whichever way possible.
Clark’s story Clark was only a year old when he was rushed to the Noah’s Ark Children’s Hospital Intensive Care Unit suffering from meningitis. He had been transferred from a hospital closer to home where his parents had taken him only a few hours earlier as a precaution after Clark developed a temperature. His condition had deteriorated rapidly and when he arrived at the intensive care unit, Clark was already on life support. His parents, Ben and Sarra, were taken to a room and told that Clark was not responding to treatment and that his chances of survival were almost zero but that they would continue to do everything they could to help the little boy. Every organ in Clark’s body other than his heart was being bypassed by a machine and it took four nurses working constantly just to administer the medication that was keeping him alive. Ben said: “We were allowed to sit with Clark but every few minutes he would crash and we were taken away. His condition was so fragile that even moving his blanket would send his body in to a tailspin and he’d need further medical intervention to try and stabilise him again. His hands and legs were turning black because of the septicaemia and he was basically dying before our eyes.” For many days, the doctors weren’t able to confidently give any prognosis on Clark’s life expectancy beyond the next few minutes and
it was well in to the second week before they started to talk about tomorrow. Even then his infection markers were climbing due to the onset of gangrene in his left leg. Ten days after being admitted, Sarra and Ben were told that Clark’s leg would have to be amputated at the knee immediately if he was to have any chance of survival. In any other circumstance there would be no way that a child as sick as Clark would be allowed to undergo such major surgery. Given his condition there was a very strong chance that Clark would not survive the operation, but without it he would certainly die. Clark did survive surgery and as a result of the amputation, his infection markers started to decrease. The medical team tentatively started talking to Sarra and Ben about Clark’s needs if he were to survive, a long list that included skin grafts, prosthetics and a potential kidney transplant. Around the four week point, Clark started showing signs that he was trying to breathe for himself and the decision was made to try and take him off the ventilator. Shortly after, Clark opened his eyes for the first time and was then moved from the intensive care unit to the high dependency unit. It was then that Sarra and Ben were able to hold Clark for the first time in five weeks. Clark spent many more weeks in hospital re-learning all the things he’d been able to do before falling ill, like rolling and sitting. He now has a prosthetic left leg which he has adapted to amazingly well.
Ben said: “Clark’s story perfectly illustrates
why having a children’s hospital is so vital. Having equipment, medical expertise and facilities that are specialised for children all under one roof makes such a difference. We were told by the intensive care team that Clark wouldn’t have made it as far as the next closest children’s hospital so for us it’s pretty simple – without the Noah’s Ark Children’s Hospital we wouldn’t have our son.” 19
Cardiology Thanks to the incredible support of all those who donate to the Noah’s Ark Charity, we have been able to invest in the heart health of thousands of children, even before they are born. The Cardiology Unit, which treats around 4,000 patients a year, now has two echocardiograph machines funded by the charity. It’s most recent addition will specifically detect and diagnose heart conditions in babies both before and after birth. As part of our commitment to the opening of the hospital’s second phase, the charity provided funding for equipment that assists in diagnosing heart conditions in older children. The department also now benefits from a new information portal which has improved clinicians’ ability to share key information and notes about the cardiac patients in their care. 20
Jess’ story 13-year-old Jess started suffering from seizures when she was eight-years-old. She underwent countless tests to try and determine a cause but nothing was found, despite the fact that the seizures were becoming more frequent and severe. Eventually things got so bad that Jess wasn’t able to do any of the things she’d previously loved like horse riding and playing with her friends. She also missed a lot of school. Jess became increasingly isolated and, worried that she may fall unconscious at any time, she began to suffer from anxiety. In 2014, Jess was referred to Dr Wilson for further tests. Using a piece of equipment called a tilt table, Dr Wilson tested Jess’s heart function at different angles, starting at horizontal and gradually bringing her to a vertical position. Monitoring Jess’s heart at all times, Dr Wilson was able to bring about a seizure in Jess that enabled him to make an accurate diagnosis. Jess is now being treated for a condition called Vasalvagal Syncopy and takes regular medication that has left her seizure free. Jess said: “Now
I can do all the things I should be doing like walking to and from school and going out with my friends. I’ve even started swimming lessons again which was completely out of the question before. I feel like I’ve got my life back!”
Ophthalmology The Paediatric Ophthalmology Department treats more than 3,000 patients a year. It works to maintain or improve the sight of children with a vast range of conditions, from squints and congenital cataracts, to cancer and inflammatory disease. As a charity, we have funded the department as it becomes increasingly independent of the adult ophthalmology service, enabling it to treat more patients and respond more effectively to emergency cases. We have also funded equipment like the Icare tonometers which allows children to have their eye fluid pressure tested as outpatients rather than being admitted to undergo general anaesthetic. Some eye conditions like Retinopathy of Prematurity (ROP), only occur in infancy and childhood. Around 50% of babies born very prematurely develop ROP, a disease of the blood vessels which in severe cases can lead to blindness. Thanks to our supporters, we have recently been able to fund a specialist device which is used to examine, diagnose and monitor a premature babyâ€™s eye. We have also funded the laser equipment which treats ROP and saves the sight of tiny babies like Edie.
Edie’s story Baby Edie was born at just 23 weeks and four days of pregnancy. Weighing only 580 grams at birth, she is one of the smallest babies ever to be treated on the neonatal unit and needed a great deal of support to help her beat very slim odds. During her first few months of life, Edie faced several setbacks including a bleed on her brain, infections and a hole in the heart. Shortly after her birth, Edie’s parents, Nicola and David, were told their daughter was at an extremely high risk of developing ROP. Thankfully, the first examination revealed no sign, a huge relief given that Edie had already battled through so many serious issues and was still extremely vulnerable. However, Dr Watts continued to monitor Edie and as the weeks progressed, she did begin to develop the condition. By her fourth examination, the ROP was severe enough to warrant surgery on both the tiny baby’s eyes.
“It was the news we’d been dreading. The ROP in her right eye was stage three, more advanced than in the left eye which was a two. Dr Watts explained exactly what ROP was. We asked what would happen if she didn’t have the operation and amongst other unfortunate things, he explained that ROP untreated can lead to blindness. We knew we had no choice other than to consent to the operation as her going blind would be devastating for all three of us and our extended families. As scary as an operation was for our 3lb something baby, who was 12 weeks old and still only at 35 weeks gestation, we knew that it was for the best.”
The operation on Edie’s eyes took three and a half hours, an excruciatingly long time for her mum and dad. But the operation went well and a short while later, just before her official due date, Edie was big and strong enough to go home. A follow up examination three months after surgery revealed that the surgery had been a complete success, though really it was something Nicola and David already knew. Nicola said: “Her
eyes are great! She does not miss a trick, not even the tiniest of details. Parents like us will never be able to thank geniuses like Mr Watts enough and we thank our lucky stars for the medical equipment that saved her sight. The effect it has on the lives of people like ours is indescribable.”
Mr Patrick Watts, consultant paediatric ophthalmologist, said: “The Noah’s Ark Charity works with us to provide equipment that is cutting edge and state of the art so that we can deliver a superior service for children under our care. It’s had a great impact on children with eye problems as well as those with potential problems, preventing them from developing vision loss of various degrees.” 23
Patient and family support Parents often liken the Noah’s Ark Children’s Hospital for Wales to being part of a big family or a home away from home. With the ethos of family at our heart, the charity is proud to fund support services that make being in hospital a little easier, for the young patients themselves but also their parents and siblings.
“Our stay at the hospital felt so homely in the strangest way. We felt like a family with these people who had been strangers only a few days before.” Natasha Patient’s mum
Emergency Parent Packs In 2016 we spoke with both parents and hospital staff to see what additional support the Noah’s Ark Charity could provide to families. From these conversations, we launched our Emergency Parent Packs, a resource which has since been rolled out with great success throughout the hospital. Quite frequently, children are admitted to the Noah’s Ark Children’s Hospital for Wales as an emergency. With little or no notice, parents and carers only have a small amount of time, if any, to pack for their unwell child, yet alone consider their own needs for a stay in hospital. Many families are transferred from far afield and don’t have anyone nearby to drop off basic items like a toothbrush or change of clothes. Completely focused on the needs of their child, some parents arrive without even a pound to buy a drink or something to eat. The emergency packs, which are now provided to parents and carers who find themselves in this difficult situation, contain basics like toothpaste, face wash, a razor for dads and a bottle of water. Also enclosed is a meal voucher for the University Hospital of Wales restaurant, Y Gegin.
Kerry’s story Kerry Decaux from Merthyr was one of the first to receive a pack when her seven-week-old daughter, Emilie, was rushed to the paediatric intensive care unit with a collapsed lung. Kerry said: “All
we could think about while it was all happening was Emilie. Then in the middle of this intense and stressful experience, where we hadn’t left her side for days, someone appeared with a little red bag filled with everything we needed to get us by. We were so touched that someone had taken the time to think about how we might be feeling.
Just having a hair bobble so I could tie back my hair or a toothbrush so we could clean our teeth made all the difference and most importantly it meant that we could do the only thing that we wanted to do, which was focus on Emilie and be with her. It was the smallest thing but it felt like the biggest gesture.”
Noah’s Ark Garden The eagerly anticipated Noah’s Ark Garden officially opened its doors to patients and families in March 2017. The fully accessible garden is a bright and vibrant outdoor space complete with a play area, maze, palm trees and a therapy zone. As a charity, we’re delighted to have been able to help make the vision for this garden a reality. It stands as a symbol of the combined vision we had for a children’s hospital for Wales from the outset – a world class paediatric facility with the needs of children and families at its very heart It provides a fun and engaging space for children to receive therapy and a safe place for them to play in the outdoors. It’s also a haven for families, who in some cases are facing long periods apart, to spend time together away from the wards. As well as providing an outdoor space for families within the confines of the hospital, the garden is also a valued new resource for the neurorehabilitation service. Natalie Gragasin, team lead for the service, said: “A park is an
environment that children are familiar with and brings some normality into their lives. It’s also a great resource for rehabilitation with the added health benefits of fresh air and natural sunlight. The wards are artificial environments with level floors and no steps which don’t replicate the challenges of most peoples’ homes. The garden allows us to practice skills which are more meaningful to the families’ lives such as walking on textured surfaces and slopes and climbing on the play equipment.”
Neve’s story Five-year-old Neve, was one of the first patients to use the garden for therapy sessions during her recovering from a brain inflammation which left her partially paralysed. Mum, Vicky, said that Neve really enjoyed the sessions but also liked the garden for more childlike reasons. Vicky said: “One of the hardest things for Neve is being separated from her beloved big brother Marley, who’s been at home while Neve and I have been here. Now that the garden is open, Neve and Marley have got somewhere to go together on his visits, somewhere that looks like a “normal” place for children to play and spend time with each other. For families like ours who’ve spent a lot of time apart and for children like Neve who’s now spent two months here, it’s a very welcome addition to the children’s hospital.”
Play specialist team Our commitment to funding the hospital play specialist team continues. Play is an incredibly important part of children’s lives. It helps them to develop, communicate and learn about the world around them. For the same reasons it’s also vitally important for children in hospital. This is why we have continued our commitment to help fund the amazing play specialist team.
Fliss’ story Fliss was two when she became very ill and spent Christmas 2015 on intensive care at the Noah’s Ark Children’s Hospital for Wales. The illness she had meant that she wasn’t able to move anything other than her eyes. Fliss couldn’t even smile. After a while, with the support of the doctors, nurses and the special equipment that kept her alive, Fliss started to get a bit better. But she was very sad because she wasn’t able to move and do all the things that she used to do, like play with her toys and run around with her brother. So even though she could smile again, she didn’t want to. The play specialist team came to visit Fliss. They played with her, moving her hands and feet for her until very slowly, she started to be able to move them a bit more for herself. They also sang songs with her to help her talk again. 28
Fliss was in hospital for seven months and sometimes the treatment she needed was frightening and the exercises she did to improve her mobility were painful. But the play specialists made it fun for her and slowly, with the help of the doctors, nurses, play specialists and physios, Fliss found her smile again. Fran, Fliss’ mum said: “There are no words in the world to describe how grateful we are to the Play Specialist Team. They’ve acted as advocates for Fliss, harnessing her with coping strategies when she needed them but also reminding us that despite her additional needs, Fliss is still the little girl she always was. They’ve kept Fliss happy and my husband and I sane!”
Working closely with the rest of the multidisciplinary team, play specialists use a variety of therapeutic tools to prepare children for hospital procedures and help them to overcome any fears or concerns they may have. The team help ensure that patients continue to reach their developmental milestones through play while also organising fun and stimulating activities that just allow children to be children, despite the difficulties they face.
Direct patient care The Noahâ€™s Ark Charity supports and enhances direct patient care by investing in both new and existing services and facilities. In 2016 we responded to a request to aid the development of a new service for children with complex bladder dysfunction by funding a specialist biofeedback machine and the associated nursing support. The computerised machine analyses the way a patient passes urine and provides feedback through visual tools that helps children learn how to better relax their muscles.
Childrenâ€™s Assessment Unit April 2017 saw the beginning of a year-long commitment by the charity to fund the night service at the hospitalâ€™s assessment unit, maintaining its provision as a 24 hour service. The unit makes it possible for patients to be treated and monitored and then often discharged without the need for hospital admission. This alleviates anxiety for worried parents but also any pressure on hospital bed spaces. The service is also vital in reducing pressure on accident and emergency services, particularly at night time.Â
A night in the life of the Children’s Assessment Unit By Becky Williams, Deputy Ward Manager
The night shift begins with a handover of patients from the daytime nursing staff. We can see up to 15 children in a shift but 7pm to midnight is often our busiest time for admissions. A child who becomes more poorly as the day progresses may not get to the GP until late afternoon. Then once the decision is made to refer to the assessment unit, there’s also often the need for families to make provision for other children in order to come in. By the time that’s all done and they get to us, it can be around 7 or 8pm. Tonight our first patient is a little boy who is having difficulty breathing. We assess him quickly and put him on a course of half hourly inhalers. We’ll keep a close eye on him as the evening progresses and once he’s responding well, we’ll start to reduce the dosage. Without the night service he’d probably be admitted on to the ward for the night but all going well, he’ll be OK to go home within a few hours. At 8:30pm a very worried mum and dad arrive with their five-month-old baby who’s been referred by the out of hours GP service with a high temperature. It’s standard practice to screen all babies who present with a high temperature for sepsis as it’s a potentially life-threatening disorder which can develop very quickly in small children. The baby doesn’t currently have any outward symptoms of a cold or virus either and
she isn’t responding well to being touched, so it is essential to get her screened as soon as possible. It takes two nurses and two doctors up to two hours to perform, but we do it here on the unit so we can get started quickly. The test comes back positive and she’s put on a course of antibiotics straight away. Early intervention is vital in these cases, so we’re very glad she came to us when she did. As I’m preparing to discharge our first young patient from earlier, another little boy is referred to us from A&E. He found the medicine box while his mum was bathing his little sister earlier in the evening and as she couldn’t be certain if he’d swallowed any, she took him straight to A&E. They’ve run some initial checks and he seems OK but we’ll observe him for the next few hours to be sure. Our next patient is a three-year-old who woke up unwell in the middle of the night. He’s struggling to breathe and has a barking cough and when we check his oxygen levels, they’re lower than they should be. Our resident doctor diagnoses croup and as his throat is very sore, we give him some adrenaline through a nebuliser to reduce the swelling. He’s attached to an IV drip and we’ll monitor him over the next few hours. He’s recently been diagnosed with asthma so he may well end up being admitted on to our medical ward for a few days to monitor his oxygen levels.
At 2:30am we get a call from a parent of one of our chronic patients. The assessment unit also acts as an open access service for children with chronic conditions. These families can come to us without a referral if their child needs immediate medical attention. This time it’s a young person who receives food through a nasogastric tube but it’s been dislodged at some point during the night. The assessment unit is a huge reassurance for families like this because we’re on hand 24/7. We also get to know the families which makes such a difference in situations like these. By 5am things are much quieter. We’ve treated and sent home most children tonight but we have a few we may need to admit later on. We work closely with the wards to ensure there are beds for the patients that need it most. 7am and it’s time for the day shift to clock back on. We take our colleagues through a rigorous handover to ensure the best transfer of care and then it’s home and bedtime for me and my team.
Hydrotherapy pool The hydrotherapy pool was funded by the Noah’s Ark Charity as part of its £7 million commitment to the hospital’s second phase, which launched in May 2015. Hydrotherapy is used by the paediatric physiotherapy team to provide support and relief to children with a range of conditions. The natural buoyancy and warmth of the water relieves pressure on joints and reduces pain and the natural resistance it provides helps improve muscle strength and balance. The pool is equipped with a sensory light and sound system, which children can control using floating switches. Before the facility was built there was limited access to hydrotherapy via an adult pool. This meant that treatment was only offered to a few hospital inpatients. But as the pool was built specifically for Noah’s Ark patients, the physiotherapy team are now able to treat children within the hospital as well as those being supported in the community, meaning that patients with chronic conditions like cystic fibrosis can also benefit.
Sharon Hortop, senior physiotherapist, said:
“Children who face physical challenges often find they’re able to do more in the water than they can on dry land. That’s great for us in terms of improving their strength and mobility but the effects are often more far reaching than that. Hydrotherapy can give children a sense of confidence in their own abilities that lasts much longer than their session in the water.
The children we see are often going through challenging times, undergoing treatments and procedures that can often be uncomfortable or painful. The hydrotherapy pool gives us the opportunity to support children in their recovery in a way that’s effective but also really fun. People often comment on how much laughter they hear coming from our area in the hospital and we’re very proud of that.”
Matt’s story Matt was diagnosed with an astrocytoma, a tumour in his spinal cord, at the age of six. Over time the tumour caused a curve in Matt’s spine which was painful and affected his mobility quite significantly. Because of this, he has found normal physiotherapy sessions very uncomfortable. But in 2016, Matt was referred for a course of sessions in the hydrotherapy pool that was funded by the Noah’s Ark Charity. Julie, Matt’s mum said “In the water Matt is
just... happy. The room is beautifully lit and warm and he can play his own music which all relaxes him. But most of all I think he feels safe and unburdened. Out of the water, Matt can’t really do any kind of exercise and feels very self-conscious but all of that melts away when he’s in. The physios who go in the pool with him make sure he gets a really tough work out but they’re lovely and fun and they treat him like an individual so he’s keen to do it and do it well.
Matt’s going through an awful lot and quite understandably, he doesn’t relish the thought of going in to hospital. But the sessions in the pool are different. It loosens the tension in his muscles, but it’s done more than that for him. It’s improved his self-esteem and his confidence.”
Staff and professional development The care provided at the Noah’s Ark Children’s Hospital for Wales by its dedicated clinical teams, saves lives and transforms futures. It’s why families often refer to them as “angels in scrubs”. The hospital’s 197 doctors, 600 nurses and countless support staff provide around the clock care to 73,000 children a year across 26 different specialities. As a charity we are committed to supporting these inspirational medical professionals in their constant strive for excellence. 34
Sponsorship of the Welsh Paediatric Cardiovascular Network
Sponsorship of the Welsh Fetal Cardiovascular Network
Radiology case review and multidisciplinary team meeting room
In 2016 the Noahâ€™s Ark Charity invested in the continued professional development of paediatricians, neonatologists, trainee doctors and nurses across Wales through its sponsorship of the Welsh Paediatric Cardiovascular Network. The purpose of the network is to standardise the care provided to children with heart problems.
In order to help improve the diagnosis and treatment of congenital heart disease in unborn babies, the charity has also provided sponsorship to the Welsh Fetal Cardiovascular Network. The network enables the provision of education and skills training to sonographers, midwives, radiologists and obstetricians with the ultimate aim of improving the quality of life of children born with heart problems.
The charity has furnished a facility within the radiology department in which clinicians from multiple disciplines can get together to review a childâ€™s radiographic images. This enables them to plan for their care, making immediate referrals where necessary. Itâ€™s estimated that between 1,300 and 2,600 children, many of whom have multiple and complex needs, will be reviewed within the facility each year.
The network also provides a forum for healthcare professionals throughout Wales to communicate with each other, enabling them to work collaboratively to optimise and enhance fetal cardiac assessments.
Looking ahead Together we have accomplished a great deal for the children of Wales, but there is always so much more to be done. With your support, we can continue to help achieve the very best for thousands of children who are treated at the hospital each year – saving lives, helping families and supporting the work of the hugely dedicated people who work here.
Our objectives • Support innovation and advances in paediatric medical care. • Grow our grant making scheme, allowing us to respond directly to the needs of frontline clinical teams. • Provide more opportunity for our supporters to fundraise through action by expanding and enhancing our events calendar. • Raise £1 million for the new neonatal unit through our Tiny Lives Appeal by December 2018. • Extend our provision of patient and family support, finding new and meaningful ways to help parents and lift children’s spirits. • Continue to demonstrate the positive and transformative impact our supporters have on the lives of young patients and their families.
Thank you for your support For us as a charity, no amount of money donated is too big or too small and no amount of time given is too long or too short. We value each and every single contribution made by our supporters, because it’s only by working together that we have achieved so much. We’d love to feature each and every person who has supported us since the launch of the hospital’s second phase in May 2015, but this report would probably then be too big to lift. So here are just a few examples of your achievements.
celebrities have helped to promote the charity’s work
or e run f v a h s r at rte suppo ren of Wales ild thon the ch lf Mara a H iff Card
volun te 19,814 ers have d onate hours d since Janua of their tim ry 20 e 16
e raised a companies hav ,200 for the total of £879 cause
reeted 2,328 santas have g r Santa’s visitors at ou A Cardiff Grotto in IKE
schools an d colleges have raise d funds fo r us in a host o f creative ways
ised at our has been ra ys al Ascot Da Annual Roy
supporters atte nded our Teddy Bea rs’ Picnic raising £9,877
generous s upporters donated to our Tiny L ives Appeal in its first yea r
5p by the raised ag levy b plastic
adrenaline junk ies have taken part in ou r annual sponsored abse il
rience of personal expe families with time to e th ve taken the hospital ha ustrate ill lp he ories to tell us their st impact. the charity’s
childr en grand , parents a paren nd t our F amily s took part Fun W in alks 39
Noah’s Ark Children’s Hospital Charity Upper Ground Floor Noah’s Ark Children’s Hospital for Wales Heath Park Cardiff CF14 4XW T: +44 (0)29 218 47310 noahsarkcharity.org Registered Charity No. 1069485
Published on Nov 20, 2017