Below are examples of some of the ways in which Chuf can support your Heart Heroes whilst in hospital.
We are always looking for ways to do more – please complete our feedback form to tell us what you found helpful and if there are any other areas we can support you.
If you are admitted to the Children’s Heart Unit in an emergency situation you will be given a Chuf washbag to help in those first few hours. The washbag will provide basic overnight essentials to help you shower and brush your teeth.
We know that 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.
If you are in need of this support please speak to the nursing team who will be able to access a Chuf washbag for you.
We understand that having a child in hospital can be a huge financial burden and often your own needs as carers are at the bottom of your list. Chuf are committed to providing food vouchers for families spending extended periods of time on the Heart Unit. Vouchers are given to families weekly and are accepted at the Hospital canteen to subsidise the cost of eating in hospital.
To access Chuf funded hospital canteen food vouchers, please speak to the team looking after you on the ward who will be able to access weekly food vouchers for your family.
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.
Please speak to the team looking after you to access this support.
Should you arrive at the Heart Unit and there not be a room available at Scott House our dedicated parents accommodation immediately, Chuf will ensure that you are accommodated in a local hotel for the first three nights. The team looking after you will arrange this with our partner hotels and provide you with information.
If your family cannot be accommodated all together in Scott House, working with the social work team, Chuf will endeavour to support your family with an exceptional circumstances grant to support accommodation costs for up to one week.
This support can be used to book family accommodation which will enable you to being together with all of your children.
Chuf’s exceptional circumstances grants are assessed in conjunction with the social work team, please speak to your contact on the unit regarding accessing this support.
We know that staying in hospital can be unpredictable, Chuf provide a discretionary fund for the ward staff to access support for families with the unexpected. The ward discretionary funds are used also to fund seasonal decorations, help celebrate Heart Hero milestones and fund rewards and incentives for Heart Heroes as they progress through their treatment
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 fund memory stars, jewellery charms and work with the staff at the Children’s Heart Unit to fund bereavement packs to support families.
We also hold an annual remembrance event ‘Wave of Love’ where we invite Heart Families to come together and remember. More details regarding Wave of Love can be found on our events section of the website.
We 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 proudly funds celebrations across the year with decorations, gifts, special visits and activities to brighten the seasons spent in hospital.
We’d love to know more about occasions you celebrate as a family and how we can support you to do so in hospital. Please contact info@chuf.org.uk to speak to one of the team if you are preparing to celebrate whilst staying with your Heart Hero in hospital.
vCreate is communications software funded by Chuf for parents on the Children’s Heart Unit at the Freeman Hospital. Whether your stay in hospital is long or short, a child’s inpatient journey can be extremely stressful for families, particularly if and when they are unable to be together at the unit. We know that for many parents, who must juggle work commitments, other children and potentially travel long distances to the hospital, it can be challenging to visit every day. Recognising the challenges parents face when trying to visit their child in hospital, particularly when they are out-of-region, Chuf continue to invest in the use of secure asynchronous video messaging as a way of keeping families connected. The secure system allows paediatric professionals to record and upload short video-clips and photos of your child on approved devices which are then shared directly with you.
Speak to the team looking after you to find out more about accessing vCreate.
Chuf provide recliner chairs and chair beds for you on the Heart Unit. Ensuring that you are comfortable and have the relevant equipment to support your babies development is an integral part of our holistic support.
We know that babies who require cardiac surgery early in their lives often need to spend prolonged periods of time in hospital. These early months are critical for the gross motor development of the child to enable them to gain the strength and skills to enable them to roll, sit, crawl and stand. ‘Tummy Time’ is widely recognised as a key factor for children in developing to develop trunk strength to enable them to progress through the developmental milestones.
For children in hospital for long periods post cardiac surgery or waiting for a heart transplant (who may also have a tracheostomy and be attached to a ventilator) conducting tummy time is a challenge and at best can only be done in a cot with the parent at the cot side which can be distressing for both baby and parent.
A recliner chair enables you to lie on the chair reclined and have your baby lie on your chest as they would at home. This gives baby the comfort of closeness to their parent, not only promoting normal development but nurturing the bond of baby and parent.
We know that being close to your Heart Hero is a priority, Chuf funded chairbeds provide increased accommodation on ward 23’s nursery for one parent staying with their child to allow you to sleep next to the bed of your little one.
New mums spending time on the Heart unit will be supported to breastfeed should they wish to. Chuf funded an upgrade of all the breast pumps recently alongside providing breast-feeding packs for each parent including breastfeeding tea, a water bottle, helpful literature and a set of Cuski mminiboos, special cloth comforters which allow you to feel close to your baby when you are unable to be by their side.
Please speak to the team looking after you to access breastfeeding support during your time on the unit.
Upon admission to the Heart Unit with your Heart Hero baby you will be given a Chuf funded small cloth comforter. Cuski miniboos 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. This handy pack of two comforters means that you can always have one with them and one with baby so your little one never has to be without their familiar, comforting scent.
Please speak to the team looking after you if you would like a set of Cuski Miniboos for your family.
Baggins Bear is a much loved initiative funded by Chuf to ensure that every Heart Hero who undergoes surgery wakes up with a new furry friend at their bedside.
Each Baggins Bear is a celebration of bravery and acts as a momento of your journey. If your Heart Hero undergoes surgery the wonderful theatre team will ensure that Baggins arrives at their bedside during recovery along with a book celebrating their journey.
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.
Please speak to Claire McGraith Specialist VAD nurse to find out more about the Get better books and how they can support your Heart Hero.
Spending time in a hospital unit is difficult for many reasons but we know for our Heart Heroes the noisy environment can often be a challenge. Working with the medical teams Chuf fund specialist sleep support to aid our Heart Heroes in getting better quality rest whilst staying on the unit. We fund white noise machines, sleep masks and ear plugs as well as other comforting touches to help foster a restful environment for your Heart Heroes.
Speak to the team looking after you if you think your Heart Hero would benefit from Chuf funded sleep support aids.
Ensuring that our Heart Heroes have the best toys and play facilities is of the upmost importance to us, we regular invest in new toys for the playroom, including role play toys, musical instruments, technology and gaming. We are proud to have built the Children’s Heart Unit playroom, outside play area and teenagers room and work hard to ensure that the toys available are engaging, educational and most of all fun. We fund Tonie boxes and tablets to enable beside play and are always looking for new ways to provide entertainment for our Heart Heroes whilst they are in hospital.
We love to hear how your Heart Heroes enjoy using the play facilities at the Children’s Heart Unit and are always keen to hear if there are ways we can improve the spaces. Please complete our feedback form to share your suggestions.
We are proud to have built the Children’s Heart Unit playroom, outside play area and teenagers room. We regularly invest in new toys and activities to help keep our Heart Heroes entertained. Arts, crats and having fun whilst being creative are integral parts of life on the unit and Chuf are proud to fund all of the arts and craft materials needed to support the wonderful work of the play team.
We love to hear how your Heart Heroes enjoy using the play facilities at the Children’s Heart Unit and are always keen to hear if there are ways we can improve the spaces. Please complete our feedback form to share your suggestions.
When staying on the heart unit at the Freeman Hospital the Clown Doctors will become part of your weekly routine. Visting twice weekely the Clown Doctors team will become part of your Heart Heroes journey by getting to know them, what makes them laugh as well as supporting them to progress and reach goals set by the medical team.
The Clown Doctors programme remains one of the most important services we fund and embodies 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.
As well as funding in patient support, after your Heart Hero is discharged home your Clown Doctor relationship does not need to end, Chuf fund a programme of ‘Very Special Meetings’ to allow your Heart Hero to continue interacting with their beloved Clown Doctors at home through virtual meetings. Speak to the team looking after you as your are discharged home to find out more about accessing Clown Doctor support at home.
If admitted to the Children’s heart unit with a Heart Hero under one years old you will be supported by the Chuf funded specialist physiotherapy team at the Freeman Hospital, their role is to support parents and promote skin to skin care for babies with congenital heart disease.
Specialist Neonatal physiotherapist, Rachel McConnel has undertaken a research and development project funded by Chuf which has helped to establish a clear pathway for supporting Heart parents to touch, hold and nurture their poorly babies.
Thanks to the innovative work funded by Chuf the CUDDLE project has been established as a multidisciplinary team supporting families staying on the Children’s Heart Unit. Click here to find out more about the CUDDLE project.
To access support from the CUDDLE team with skin to skin, bonding breastfeeding and caring for your baby please speak to the team caring for your Heart Hero.
Weekly music therapy sessions take place on the Children’s Heart Unit funded by Chuf with Scarlett our Music Therapist from Nordoff Robbins visiting on a Thursday.
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.
Please speak to the play team if you think your Heart Hero would benefit from Music therapy.
Tuesday mornings are filled with fun, singing and bubbles in the Heart Unit playroom. Chuf funds weekly music sessions aimed at younger Heart Heroes. These sessions are interactive and a wonderful opportunity for families to come together, sing and play.
Speak to the play team if you think your Heart Hero would like to take part in the weekly sessions.
At Chuf a key strategic aim of ours is to support innovation, to bravely support research, cutting edge technology as well as pioneering innovative ways of working. Working with medical teams we fund the purchase of equipment which is beyond NHS provision. In recent years we’ve funded cutting edge 3D Echocardiography machines, innovative mobility systems for children on VAD’s and state of the art distraction equipment to support our Heart Heroes undergoing treatment.
Chuf currently fund the full time Occupational Therapy service which supports Heart Heroes staying on the Children’s Heart Unit. As part of your Heart Heroes treatment journey the Occupational Therapy team will provide bedside support and aid pre and post surgery movement and development.
Please speak to the team looking after your Heart Hero to find out more about this Chuf funded service.
Chuf support a wellbeing package for long term adult congenital patients funding weekly 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, affecting their mental and physical health.
To support Chuf fund weekly low impact movement sessions in the chair and standing positions. In order to take part plesae speak to the team looking after you as an inpatient.
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.
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.
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.
Children's Heart Unit Fund - Chuf
Designworks Business Centre
William Street
Gateshead
NE10 0JP
Tel: 0191 281 3166
Email: info@chuf.org.uk
Chuf is a registered charity in England and Wales No 1160831 © 2025.
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