How we
make a
difference

Babies are sent home with a monitoring program using handheld pulse oximeters to track oxygen levels daily. This equipment reassures families and the cardiac team, helps detect early health changes, and allows children more mobility outside the hospital. Each monitor costs £550, with 19 funded by Chuf. Some children also need daily blood-thinning medication checks, which can be done at home with battery-operated machines—reducing hospital visits and anxiety. Chuf has funded 40 of these machines at a total cost of £14,800.00.

Working in partnership the NENC-CHDN Chuf are funding a new project which aims to support the wellbeing of parents and carers staying at the Freeman Hospital. The initiative offers a weekly one-hour physical activity session at Scott House every Wednesday from 11am-12pm and 12.15-1.15pm. The sessions will be led by a Lauren, a qualified physical trainer, who is also a parent of a heart hero, the sessions focus on promoting social interaction, providing a positive distraction, and highlighting the importance of physical activity for mental wellbeing.

Chuf funded recliner chairs for the Children’s Heart Unit to help babies recovering from cardiac surgery. These chairs allow parents to hold their babies comfortably, supporting both the child’s physical development and the parent-child bond during long hospital stays.

Chuf funded the purchase of three additional Chairbeds for the heart unit. The chairbeds provide increased accommodation for one parent staying with their child on the open ward area. Many of the parents visiting the Children’s Heart Unit are reluctant to leave their children over night and in order to make their stay a little more comfortable, Chuf has funded chairbeds to enable to them to sleep next to the bed of their little one. Each bed costs approximately £1000 and is a vital lifeline to parents staying on the ward overnight.

vCreate video messaging is now an essential part of the Children’s Heart Unit at Freeman Hospital, helping over 160 families stay connected with their children during hospital stays. Staff securely share photos and videos, providing reassurance and cherished memories to parents, especially when they can’t be at the bedside. As one parent shared: “vCreate was a great tool which allowed us to create a picture diary for our son, and allowed us to see pictures of how he was doing whilst not at the bed side. I found it extremely difficult leaving him over night, but seeing the images of him asleep, made me feel more settled... It is such a valuable tool, and us as parents really appreciate the time the nurses took to capture such moments, but also for vCreate to be an accessible tool in such an emotional environment, and to give us photos we can share and keep forever”.

Chuf funded an upgrade of all the breast pumps used to support breastfeeding Mums at the Children’s Heart Unit. Along with the Chuf funded breast-feeding packs which are supplied, this upgrade was of vital importance so that Mums choosing to breastfeed have the correct equipment to support them in doing so. We are proud to support the Children’s Heart Unit, ensuring that the very best equipment is available and stepping in where the NHS cannot. Heart Hero parent Jenny, arrived at Freeman Hospital on New Years Eve. She explains how much the pack meant to her: “We had support from Chuf from the first time we set foot in the PICU. The little extras such as breast feeding support packs made such a difference to our experience and helped us deal with a very difficult and stressful situation by taking away some elements of worry.”

During the pandemic, Chuf supported families in the Heart Unit by funding hospital meal vouchers, allowing parents to stay close to their children and feel cared for during difficult times. Although this started as a temporary measure, the ongoing need led Chuf to continue funding food vouchers at a cost of £25,000 per year. Feedback from families has been overwhelmingly positive, with many expressing how much this support helped them feel less isolated and better able to care for their children.

Each family who is admitted to the Children’s Heart Unit in an emergency situation is given a Chuf washbag. This provides basic overnight essentials to help families shower and brush their teeth. Often families who are admitted in an emergency situation arrive at the unit with nothing at all and Chuf is there to help in those first few hours. It costs just £20 to provide a Chuf washbag.

Throughout the year there are emergency situations where Chuf are able to step in and alleviate some of the financial burden for you as families; for example funding emergency taxis when your Heart Hero is transferred to another unit. We also reimburse car parking costs for families who are staying on the Heart Unit for a significant period of time.

In October 2014, Chuf fundraised to build Scott House at Freeman Hospital, providing 18 en-suite bedrooms and family support facilities for parents of children in the hospital. The house, managed by the Sick Children’s Trust, offers emotional and practical help, with private rooms connected directly to the ward. Scott House is named in honor of Anne Scott, whose fundraising for her daughters led to the founding of Chuf. The charity continues to support the running costs of Scott House each year.

Sadly, the terrible reality is that not all of our Heart Heroes recover and go home with their families. At Chuf we are there throughout the good times and also the unthinkably hard times. We provide support to families throughout their whole journey. We fund memory stars, jewellery charms and work with the staff at the Children’s Heart Unit to fund bereavement packs at a cost of over £2,500 per year.

At Chuf we step in to not only provide hotel accommodation for families who are unable to stay in Scott House but also to provide respite accommodation for families who have more than one child. Annually we provided hotel accommodation over the Christmas period for families who have a little one in hospital and other children at home to ensure that families can be together on Christmas Eve and over the festive period. The annual cost of additional accommodation is over £6,000.

These small cloth comforters are used to help with the very important bonding process between parents and their baby when Mums and Dads can’t hold their little ones after birth. Smell, as we know is the first sense a baby develops, and scientists believe that a baby’s ability to smell their parent is one of the most important steps in learning to recognise them. A handy pack of two comforters means that Mum or Dad can always have one with them and one with baby so little one never has to be without their familiar, comforting scent. It costs just £20 to provide this vital connection between parent and baby and Chuf have been funding miniboos for our Heart Hero families since 2018.

We have funded a LEGO CT scanner for Heart Heroes to play with before undergoing treatment at a cost of £224. The model offers a chance for children to get a better understanding of what the CT scanner looks like as well as what it does. This helps to reduce stress and anxiety about undergoing treatment by educating them on the process and it also helps to build trust. There has been nothing but big smiles on the faces of the children who have been able to enjoy the toy.

Baggins Bear is a much loved initiative funded by Chuf. Each bear costs £10 and is a vital tool for the team at the Heart Unit when supporting little ones through their surgery journey. In 2018 Lisa Morgan, an experienced health care professional at the Freeman Hospital, developed the new initiative with her management team to provide additional support for patients and families when they go to theatre for open heart surgery. Children who undergo heart surgery are given a Baggins Bear to celebrate their bravery and act as a momento of their journey. Baggins arrives at their bedside during recovery and has a book which Lisa has created herself; the book can be translated into any language to help engage with all families. It’s a lovely keepsake for the children to take home with them. We are proud to fund the Baggins Bear initiative for our Heart Heroes and to be working with such an amazing team at the Children’s Heart Unit.

At Chuf we champion the little things, so when the Play Specialists came to us with the idea of funding a fairground ride for the day, we were delighted to be able to support them! Being in hospital means things like enjoying the fun of the fair over the summer isn’t possible, at Chuf anything is possible! Working with the Play Specialists we use your donations to bring smiles to Heart Heroes in hospital all year round. Here are some quote’s from the children and their families who enjoyed this activity during their stay in hospital. ‘The fairground ride was a brilliant activity that reminded us of happy times at home. Evie absolutely adored it and we are so thankful for the fantastic play team for organising it for us’ – Evies mam ‘This is THE funnest hospital ever’ – Ella aged 7 ‘A lovely day for the children, it is lovely to see them smile again’ – Arsalas Dad

As well as funding the build of the invaluable play facilities at the Freeman Hospital Chuf was instrumental in establishing the incredible play nursing team at the Heart Unit and we continue to support their development and vital work by funding materials. Over the last year we have funded arts and crafts materials, new toys, gaming equipment and we continue to fund subscriptions of superfast internet access, Disney+ and Netflix annually.

Chuf funds weekly music sessions on the Heart Unit at a cost of £2940 per year. Sophie Patton, a Play Nurse Specialist, tells us why these sessions are so important, ‘The children and families enjoy our weekly music sessions. It brings them a sense of ‘normality’ to their days whilst in hospital. Some who have been in hospital for a number of months. Music stars helps with their continuing development, for example speech, fine and gross motor skills and social interaction. It is a great stimulation for the children, and it is emotionally uplifting for the whole ward. It’s nice to be able to get the children and parents together once a week from all areas of the heart unit. Many of our families attend music groups pre admission to the ward and they find joy that they are able to continue this whilst admitted to hospital’

We continue to work hard to ensure festivities and milestones are extra special for our little ones who cannot be at home to celebrate with all of their family. Chuf spends over £6,000.00 each year to ensure that Christmas is a magical time of year for our Heart Heroes. Chuf proudly funds a soft toy for every Heart Hero attending a clinic appointment at Freeman Hospital during December. Treats like this make such a difference to the children who can often be worried about attending their check-ups. Chuf also funds Build A Bears complete with outfits to be given to babies and children spending Christmas Eve on the ward. Providing comfort for our Heart Heroes during their time on the Heart Unit over the festive period. In December, Chuf arranges for a reindeer to visit the unit. By bringing festive magic to the unit in December we hope to bring a smile to the faces of our Heart Heroes helping to get them in the Christmas spirit. Since 2019, Chuf have funded Christmas scrubs for staff to wear on Christmas Eve and Christmas Day. Other celebrations throughout the year are marked with gifts, decorations, special treats and deliveries.

Over the years Chuf has funded wonderful additions for Clinic E that truly make a difference. From the soothing fish tank, TV/DVD's to provide distraction and the playful Lego CT Scanner, these thoughtful touches bring calm, peace, and a touch of fun to Heart Heroes as they wait for their outpatient appointments.

Since 2006, Chuf has worked in partnership with Tin Arts delivering The Clown Doctors programme at the Freeman Hospital and over the years thousands of individuals have benefitted. Chuf fund the Clown Doctor programme annually at a cost of £35,000. The Clown Doctors remain one of the most important services we fund and embody our value that there is a place for everyone. The ability of the play therapists to connect with Heart Heroes of all ages is second to none and their input into the recovery of our patients is invaluable. We believe in the power of the Clown Doctors so much that in 2021-22 we extended the impact of this service beyond the walls of the Freeman Hospital and have funded a programme of ‘Very Special Meetings’. This programme was established as a result of the Virtual Clown Doctor programme, known as ‘Very Special Meetings’. This was piloted with young people, who had already met and engaged with the Clown Doctors during their time on the Children’s Heart Unit and are now living with their condition at home and attending outpatient appointments at the Freeman. This programme has been a resounding success and we continue to grow the programme working closely with the medical team to identify families to engage with upon discharge. The extension of our service has an additional cost of £10,500 annually and stands testament to our lifelong commitment to Heart Heroes by extending care beyond the hospital walls. To find out more about The Clown Doctors click here: https://www.chuf.org.uk/what-we-do/clown-doctors/

At Chuf we appreciate how overwhelming understanding what is happening can be for your Heart Hero. We work closely with the medical team to develop holistic support which is impactful for your Heart Hero and family. For Heart Heroes who are using a VAD or on a transplant journey, Chuf fund bespoke beautifully designed interactive books and communication aids to help Heart Heroes understand their treatment. These book have been designed and written to help your child understand why they need a Berlin Heart and Heart transplant.

Chuf are funding a Music Therapist from Nordoff Robbins once a week on the heart unit. Music therapy can play an important role in recovery from serious illness, the children enjoy the continuity each week and look forward to trying new instruments, forming bands and exploring new music. ‘This programme is hugely beneficial to everyone and all patients can get involved whether they are on PICU, HDU or in the playroom, we can work around their needs – Play team.

Chuf has provided funding for specialist equipment to assist Occupational Therapists in supporting paediatric cardiac patients during their hospital stay. This equipment will enhance the ‘Hearts in Motion’ early movement project within the PICU on the Children’s Heart Unit. Early mobilisation in a PICU setting has been shown to have a positive effect, potentially reducing the overall length of stay, decreasing time on ventilation, lowering complication rates, and improving both physical and emotional well-being.

Chuf funds a full-time Occupational Therapy service for Heart Heroes on the Children’s Heart Unit. The team offers crucial bedside support to help children move and develop before and after surgery, especially those waiting for transplants or with Ventricular Assist Devices (VADs). Long hospital stays can hinder development by limiting play and social opportunities, so the therapy team creates tailored plans focusing on play, social skills, motor coordination, daily activities, and self-expression. Support is provided individually and in groups to encourage routine, interaction, and parental involvement.

Chuf provides a discretionary charitable fund which is administered by the Freeman Heart Unit staff and exists to support the little things that the NHS cannot help with. This means that staff on the ward can be spontaneous with treats for Heart Heroes, parents and staff. They can organise movie nights or purchase new toys when needed. The fund also allows them to be responsive to unforeseen situations and supports things like emergency travel or support for people arriving in the middle of the night with nothing. The playroom is also well stocked with craft items paid for from Chuf’s discretionary fund. We are always delighted to see our Heart Heroes’ artwork proudly displayed.

Spending time in a hospital unit is difficult for many reasons, the noisy environment can often be a challenge. Chuf supported a sleep study project that led to providing white noise machines, sleep masks, ear plugs, and other comforting items. These contributions help create a peaceful environment for Heart Heroes in the Children’s Heart Unit.

Chuf is working closely with the NENC CHD network to continue to support cardiac care across the region, inspire innovation and improve care. The development of the CHD network provides a great opportunity for Chuf to support cardiac care across the region. Together with the network we will establish a patient engagement group to support children and families throughout their CHD journey and into adulthood. To find out more about being involved with the North East and North Cumbria Clinical Cardiac Network and supporting patient engagement, please visit the networks website www.nenc-chdn.uk

The Transplant Games aim to demonstrate the benefits of organ donation and transplantation, encourage transplant patients to regain their fitness and socialise with other families on a similar journey, as well as increasing awareness of the Organ Donation Register. The games also seek to thank and celebrate donor families for their gift of life. The British Transplant Games take place each year around the UK with The World Transplant Games and The Winter Transplant Games taking place every 2 years all over the world. Chuf have supported the Freeman Children’s team to attend the British Transplant games since 2016, at a cost of £21,000 per year. Chuf is proud to fund families attending the games each year and would love to help grow the team! If you would like more information about attending the games please get in touch! info@chuf.org.uk

Chuf support a wellbeing package for long term adult congenital patients funding movement for wellbeing sessions in the hospital. Long term adult congenital patients have told us that their inability to engage in physical therapy is a significant issue. These weekly sessions support their mental and physical wellbeing.

Chuf, for hearts, for families, for life – We support Adult Congenital Heart patients by providing a discretionary charitable fund to support with the things the NHS cannot. We have also funded, equipment, tablets with Netflix and Disney subscriptions and a games box to help relieve the boredom of a long hospital stay. What does Chuf mean for Adult congenital heart disease patients? Patients have cold drinks at their bedside in mini fridges Parents and carers can stay at the weekends close to the hospital Toiletries keep patients clean and smelling lovely Eye masks and ear plugs mean a good night’s sleep A patient could buy flowers and a card for his wedding anniversary Boxes to store all essential items whilst in hospital ECG monitoring from home Blood pressure monitoring from home Relaxation therapy for inpatients Unlimited Wi-Fi with a great signal for patients Trip out of hospital to beach whilst on inotropes Spending time with family, outside of the hospital, for long term patients Treat breakfasts from a local deli for long term patients Movie nights and picnic lunches makes a change from hospital food

The partnership with the North East and North Cumbria Congenital Heart Disease Network has expanded clinical education for healthcare professionals. Thanks to a £23,000 donation from Paige Jones in memory of their cousin Nelle, Chuf funded a SimBaby simulator named “Nelle.” This advanced simulator helps train staff to manage critically ill children with congenital heart disease, providing realistic scenarios to improve care across the region.

The Accuvein has been trialed in Clinic E and on Ward 23 and it has been found to make identifying suitable veins for cannulation and venepuncture more accurate. It also provided distraction for patients during the procedure. The Accuvein was funded by Chuf at a cost of £4465.00 and has significantly decreased the time spent taking vital blood samples, which in turn has decreased the distress for both the child and their loved ones. An additional Accuvein has been purchased for the Heart Unit from funds donated by one of our wonderful supporters.

Chuf has funded a pain and anxiety distraction system, known as a 3D-V-Pod, to aid with distraction techniques for children during uncomfortable or scary procedures at Freeman Hospital. Costing over £25,000, the V-Pod sensory unit consists of a 50-inch mobile 3D TV system, specialist software and four pairs of 3D Glasses Systems. The system is a fun, interactive and crucial piece of equipment, enabling children and their families to have an enhanced hospital experience. Charlotte Campbell, Director of Fundraising and Operations at Chuf, said: “Being admitted to hospital at any age can be a scary and unsettling experience, and for children the hospital environment can cause anxiety and trauma. “The V-Pod system is a fantastic piece of equipment which helps distract children from unsettling scenarios, whether it’s a general health check-up, changing of dressings, taking blood and everything in between. The interactive system is for children and their families to enjoy in clinic, Ward 23 (the Children’s Heart Unit), HDU and PICU.”

Chuf has funded 5 brand new Vapotherms at a cost of £28,050.00. Vapotherms are a non-invasive high-flow respiratory support system used for treatment of respiratory failure and also cardiac failure as they help reduce the workload of the heart. They use a mixture of oxygen and air to deliver a set concentration via nasal cannula. The Vapotherms have a battery and also portable air and oxygen so the children using them can be mobile, rather than restricted to their bed for the duration of their therapy. Being mobile around the ward and the hospital allows crucial time in the playroom and also the outside play area. This encourages play and development and can dramatically transform and enhance the child’s comfort and quality of life during their stay in hospital.

Chuf has funded a new trans-vaginal 4D ultrasound scanner and examination couch to improve the services at the Fetal Medicine Unit of RVI Newcastle. This unit provides diagnosis, counselling, and support for parents from the North East and North Cumbria who are expecting babies with congenital heart conditions. Thanks to the advanced imaging of this 3D technology, heart conditions can now be detected as early as 14–16 weeks into pregnancy. Early detection allows parents more time to receive counselling, discuss options, and make informed choices. It also reassures families with a history of congenital heart conditions about normal fetal anatomy sooner.

Pioneering surgeons in Newcastle are using the OCS™ HEART (Organ Care System), with support from Chuf since 2016. This technology keeps donor hearts at normal temperatures and perfused before transplant, increasing the number of hearts available and making daytime transplants safer. The NHS now funds DCD (donation after circulatory death) donor hearts due to the system’s success. The OCS has enabled successful transplants for both adult and paediatric patients, maintaining hearts in optimal condition during long bypass times and supporting both DCD and DBD (donation after brainstem death) donors. The system expands donor availability, improves patient care, and increases the number of heart transplants.

Chuf has funded two state of the art Ultrasound machines costing £61,000. The 2 new ultrasound devices are among the best available on the market. Their improved image quality will help the team at the Freeman Hospital to reduce complications during the procedure of obtaining vascular access in their smallest cardiac patients. They will help to place nerve blocks in the chest wall of children undergoing cardiac and thoracic procedures, and thus reducing their postoperative pain. They will also open the door to new areas of research, for example, investigating the need of preoperative fasting in our youngest patients by examining the stomach content with ultrasound.

Chuf has funded 13 advanced ECHO machines for several hospitals, costing £701,000. These machines provide high-quality heart scans for babies and children, allowing for faster and more accurate local diagnoses. Wireless image sharing speeds up expert review, reduces travel for families, and eases pressure on main cardiac centers. This leads to shorter waiting times, better survival rates, and less stress for parents. ECHO scans, a type of ultrasound, are now more widely available outside main cardiac centers, benefiting both patients and clinicians

Chuf has funded five specially adapted buggies for children fitted with Ventricular Assist Devices (VADs), enabling families to venture out safely while their child awaits a heart transplant. Claire, the specialist VAD nurse at Freeman Hospital, emphasises the profound difference these buggies make, including improvements in safety, independence, and overall convenience for families facing difficult circumstances. Each buggy is individually customised to securely accommodate all essential VAD equipment.

Chuf has funded the printing of 3D heart models since 2015 at a cost of £59,000. More recently Chuf have part funded, alongside Newcastle Hospitals Charity, a 3D imaging workstation with software to enable the team at the Freeman to create virtual heart models to aid their discussions in surgical meetings and plan complex surgical procedures, this also means the team now have a dedicateed workstation is paediatric cardiology. This equipment also has great potential in training junior doctors and surgeons and has great education value for the patient and their family and other healthcare professionals involved in the care.

We believe passionately in improving care for Heart Heroes and advocating for the very best services available. Chuf have bravely funded a research project to identify the gaps in psychological support provision for Heart Heroes and their families in our region and are working in partnership with the North East and North Cumbria Congenital Heart Disease Network to advocate for change and support service improvement. As we develop this project we would love to hear from you and understand what holistic support your Heart Hero would benefit from. Together we can improve and advocate for the very best support for our incredible Heart Heroes. Please complete our feedback form linked at the top of this page.

Chuf initiated the Play Service at the Children’s Heart Unit over 15 years ago. Funding one play specialist to work with children, providing non medical support to patients and siblings. The play service has expanded thanks to the support of Chuf, there are now play specialists working seven days a week and we have a team of four working throughout Ward 23, PICU and the Children’s Heart Unit Outpatient Clinic. The amazing play team are experts at providing distraction, stimulation and lots of fun and games for the children staying on Ward 23, their support also extends to the siblings and families of patients.

In 2020 Chuf began funding a new post of a Children’s CHD Specialist Nurse for complex discharge and vulnerable babies. This post lead on a Quality Improvement project to facilitate and support a “No Place Like Home Initiative”. The role was established to bring care closer to home through clinics, the ward and local teams working together to reduce the length of stay in hospital, to provide a safe and timely discharge and to ensure there is continued support for families once home. In 2022 the NHS recognised that this role was a vital part of the overall service and agreed to take on this role for the long term. We are delighted to have helped establish this role to support our Heart Heroes and their families. We continue to support the Liaison nursing team through the purchase of equipment to ensure safe and timely discharge.

The most complex single ventricle Heart Heroes may eventually require a Fontan procedure to extend their life-span, this vulnerable group of patients will need ongoing care and support to manage their conditions. That’s why in 2019 Chuf appointed the UK’s first Fontan Nurse Specialist at Newcastle’s Freeman hospital. This role not only provides clinical support but contributes to research that could hopefully see much better care pathways and overall outcomes for Fontan Heart Heroes. In 2022 the NHS recognised that this role was a vital part of the overall service and agreed to take on this role for the long term. We are delighted to have helped establish this role to support our Heart Heroes and their families.

Chuf funded a pioneering research project with the specialist physiotherapy team at the Freeman Hospital to support parents and promote skin-to-skin care for babies with congenital heart disease. This led to the creation of the CUDDLE project, a multidisciplinary team supporting families on the Children’s Heart Unit. The project aims to establish a clear pathway for parents to nurture their babies, a unique approach not yet implemented in other UK children’s cardiac centre's. The goal is to expand this support nationally, improving developmental care for children with heart conditions.