Inspiring hope and enabling Heart Heroes to reach their potential.
Inspiring hope and enabling Heart Heroes to reach their potential.
To date, CHUF have donated over ten million pounds to support the Children’s Heart Unit at the Freeman Hospital.
Freeman Hospital is one of only two hospitals in the UK performing heart transplants for babies and children. CHUF understands that the NHS, whilst providing expert medical and surgical care, can’t possibly provide all that one would want for a sick child in hospital to make the stay for them and their family more bearable, nor can it always provide the most up to date equipment necessary to ensure that the care is amongst the best in the world. CHUF raises money to fill this gap and funds large and small pieces of equipment, facilities, aftercare, salaries and research.
To date, we have donated over ten million pounds to the Children’s Heart Unit at the Freeman Hospital, which has subsidised state of the art heart scanners, syringe pumps, a paediatric heart/lung machine, intensive care monitors, portable vapotherms, portable Echo machines and resuscitation training manekins. This is all in addition to infrastructure costs for the parents’ accommodation and playroom.
Our families come from all over the UK!
Babies born with complex cardiac conditions, such as hypo-plastic left heart syndrome, are surviving longer due to successful management of their condition and this has resulted in more babies being discharged home. As part of this management, babies are monitored through the vulnerable babies programme undertaken by the children’s cardiac nurse specialists.
Having scales at home means families are able to detect subtle changes in their baby’s condition which allows for remote guidance and advice which provides assurances to both the parents and cardiac nurse specialist team.
This equipment has proved invaluable in the care of many of our our Heart Heroes babies at home at a cost of £1908.00
The Accuvein has been trialled 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.
Projectors have been funded by CHUF at a cost of £395.00, these are frequently used for distraction of patients during ECHO scans.
Wall mounted changing stations have been purchased to enable families to change their children with ease in a small room.
CHUF are delighted to fund a new post for a Children’s CHD Specialist Nurse for complex discharge and vulnerable babies. This post will lead on a Quality Improvement project to facilitate and support a “No Place Like Home Initiative”.
This role will 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 ensure there is continued support for families once home.
The impact of the Covid-19 pandemic is affecting us all, but for children with heart conditions it is an especially worrying time.
The need for social distancing is having an impact on the services that CHUF funds and the care being delivered at the unit has had to change; non-essential visits cancelled, nurses wearing more protective kit which can be frightening for children and families are restricted to only one parent or carer. Communal areas are now closed, including the playroom, and ‘Make Me Sparkle’ and ‘Clown Doctor’ visits have also had to be suspended until further notice.
Your support has helped CHUF respond to the pandemic, here is how:
The communal kitchen space in Scott House cannot be used due to current government guidelines around Covid-19. An emergency float has been provided to feed families at this time. CHUF has also funded hotel stays and transport for ‘at risk’ families that cannot stay in Scott House, so they can still be there for their hospitalised Heart Heroes.
CHUF has purchased a 3G enabled tablet with a subscription to Disney+ along with the purchase of new games, new toys and magazine subscriptions to help our Heart Heroes pass the time.
Hand creams for staff on Ward 23, PICU and Clinic E have also been purchased along with brand new large water bottles for parents to access now that they cannot purchase drinks from the shop.
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.”
Such participatory play between staff, children and parents encourages the child to cope with any negative feelings, fear and pain, making the experience less traumatic.
Charlotte added: “CHUF raises vital funds to support children who are born with or develop heart conditions and their families. By funding such an amazing piece of equipment, CHUF has helped make a huge difference to so many lives with the help of fundraisers across the region.”
In 2019 CHUF 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 allowed crucial time in the playroom and also the outside play area. This encourages play and development and can dramtically transform and enhance the child’s comfort and quality of life during their stay in hospital.
In November 2019 CHUF funded a recliner chair for the Children’s Heart Unit at a cost of £957.00.
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 the parent to lie on the chair reclined and have baby lie on their 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.
Every Summer, CHUF arranges for an ice cream van to come to the Children’s Heart Unit as a sweet treat for the patients, parents and staff at a cost of around £300.00.
Visits like this can put a smile on the face of a child and their siblings who are spending their summer on the Heart Unit.
In April 2019, the Mark Benevolent Fund donated an amazing £7,625.00 which was to be used to fund the refurbishment of the Children’s Heart Unit sensory room.
The sensory room is a much-loved area of Ward 23’s playroom and thanks to their generous donation, it now has state of the art equipment which will allow our Heart Heroes to enjoy special times spent playing in a sensory environment.
In June 2019 CHUF funded 6 Puppet Making Workshops led by Alison from Tin Arts for Ward 23.
Each session runs for 3 hours and includes both small group sessions in the playroom, alongside one to one play at the bedside. During the sessions, each child would create a puppet and work with Alison to bring it to life through stories and play. Each child keeps the puppet they have made.
The total cost for 6 sessions which were funded was £750.
A small proportion of children require blood thinning medication following surgical intervention or procedures, to prevent life threatening clot formation. Daily testing of the medication’s effect is imperative in monitoring levels and to dictate dosage.
Using a battery-operated home monitoring machine allows the child to be at home and eliminates excess hospital visits and unnecessary anxiety for the child and family. CHUF have funded 10 of these machines at a cost of £2,392.00.
In November 2019 CHUF funded 6 patient trolleys for PICU at a cost of £600.00 each.
The trolleys were chosen to improve storage and enhance the space for those patients that are in high dependency for a long time.
The lovely bright colours also help to make the environment aesthetically pleasing as we try to maintain a family and child friendly area for our patients.
In 2019 CHUF were thrilled to fund a football table for Clinic E, at the cost of £435.00.
Thank you to each and every one of our wonderful supporters, you make spending time in hospital a little easier when children are visiting for outpatient appointments and we know lots of fun and games have been played on it so far!
CHUF spends approximately £5,000.00 per 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, thanks to the generosity of Rent A Reindeer, 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 them to get them in the Christmas spirit.
In 2019, CHUF also funded Christmas scrubs for staff to wear on Christmas Eve and Christmas Day.
CHUF recently 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 2018. 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.”
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.
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.
https://www.chuf.org.uk/news/freeman-nurse-wins-national-nursing-award/
Heart transplantation: It can mean a second chance at life. Patients around the world share in this dream. Surgeons want nothing more than to reassure their patients that everything will go smoothly. However, many are coming to realize that the way they currently preserve organs, on ice in a cooler, could be significantly improved.
These pioneering surgeons are embracing a new organ preservation technology, the OCS™ HEART (Organ Care System) is designed to help:
• Transplant more hearts
• Deliver improved patient care
CHUF has been able to support the arrival of this innovative, ‘game-changing’ technology to Newcastle thanks to the outstanding fundraising efforts of two families united in daunting times, and their quest to make a difference.
Our Patron Graham Wylie has raised significant funds over many years through annual golf days and scores of other events. His daughter Kiera underwent life-saving surgery at Newcastle’s Freeman Hospital when she was young. Graham has remained a huge supporter of CHUF ever since and funded the first ten sets of specialist kit which is needed each time the Organ Care System is used. CHUF was delighted to see Graham recognised for his contributions to charitable causes at the 2018 Pride of North East Awards.
Sergio and Emma Petrucci’s daughter Luna also required major heart surgery at the Freeman Hospital to correct congenital defects in her heart. Since then, they have raised well over three hundred thousand pounds for CHUF through their Red Sky Balls and other fundraising events.
Sergio recently met members of the Freeman team along with the heart console. He said: “It’s been absolutely fantastic to see this pioneering technology first hand and meet so many members of this amazing team. “It’s so important when setting up fundraising events to be able to show where the money raised goes to and so we’re delighted to finally share this with our many supporters from the Wearside area.”
For many years CHUF have been proud to fund a full-time Psychologist at Freeman hospital and a supporting personal assistant.
Often our parents and children require psychological support on leaving hospital. It is vital that this support is readily available and that there is a dedicated team to assist in their hour of need.
There are a small number of children attending our outpatient clinics who are too anxious to be able to take part in all that is required of them in their appointment. For example: examination by doctor, echo, bloods etc. We have built up resources to use with these children, who are usually pre-school and primary school age. Role play is a powerful tool in this instance, and some teddy bears, alongside hospital dressing up outfits in various sizes to be used by staff and patients have proven to be fantastic asset.
We are delighted that in 2017 we expanded our psychological support to the District General hospitals in the Northern region.
Please visit our Other Hospitals section to find out more.
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. A weekly session is held in the playroom specifically for sibling support providing a much needed platform for siblings to offer peer support to each other and have time to play and talk about how they are feeling whilst spending time visiting their loved one in hospital.
CHUF are working in partnership with St Oswald’s to fully fund a family support worker for three years, to provide support for families of children on the Heart Unit and as a support to the team of staff at the Children’s Heart Unit.
The Masonic Charitable Fund awarded a grant of £45,000, which was boosted by a further £5,000 from the Northumberland and Durham Red Cross of Constantine Freemasons Care of Children Fund. This incredible grant is enabling CHUF to fund the role of a Family Support Worker for three years.
Treatment, which can last for many months, is a huge strain for the families of the children and figures show that many parents will suffer a nervous breakdown after they return home from the Heart Unit, no matter what the outcome of their child’s treatment.
CHUF, alongside St Oswald’s Hospice, have recruited and trained a specialist Family Support Worker, Jan O’Donell. While families hope for the best, Jan will work with them to ensure that they are prepared for the worst. She will also support hospital staff who sometimes struggle with the emotional impact of their jobs.
Chris Gray, Chief Executive of the Children’s Heart Unit Fund said:
“We are extremely grateful to the Masonic Charitable Foundation for their support. It means we can continue providing this vital service for many more families in the future. We cannot thank the Freemasons enough for their generosity.”
Barry Speker from Northumberland Freemasons said:
“We are very happy to support the Children’s Heart Unit at the Freeman Hospital. Having a child with a serious heart condition is a terrible strain for any family and giving them the support they need can make a huge difference both to them and to their children.”
CHUF have funded the Clown Doctor programme at the Children’s Heart Unit for over thirteen years and in that time they have become a vital part of the ward team.
Martin Wilson, director of Durham-based TIN Arts, which manages the Clown Doctors programme, said: “Over the last 10 years the Clown Doctors have become a valuable part of children’s journeys in hospitals across the North East”.
Nuritza Daghlian, programme manager, said: ‘‘The Clown Doctors’ programme recognises that the implications of hospitalisation are far wider than simply those relating to medical conditions. Fear, boredom, loss of control and other insecurities can adversely affect children in hospital. Through therapeutic play, the Clown Doctors offer a way of supporting and empowering children who may be suffering with these issues. Our programme is in no way intended to replace medical treatment but we offer something that the hospitals can’t. It is not just about entertainment but working with a specific child and helping them overcome the problems they are facing.”
We wish to thank the Ghyll Leng Trust and the Hadrian Trust for kindly funding Clown Doctor sessions. We would welcome future support to fund Clown Doctor sessions.
The heart is one of the most important organs in the body and also one of the most complicated. Because of this, there are a few things that can go wrong before and after birth. To hear that your baby or child has a heart condition can be devastating and is the most upsetting time for parents.
The Liaison service was established in 1995 and initially funded for three years by CHUF. The post was then taken on by the NHS Trust as part of the vital services offered by the Children’s Heart Unit at the Freeman Hospital.
The role was the first in the country to have a home visiting service and this proved to be incredibly beneficial as changes in condition were picked up early and in some cases undoubtedly helped to save lives.
We are so proud that our initial funding for the original post has resulted in a team of three 3 Children’s Cardiac Nurse Specialists, now fully funded by the NHS, who have a wealth of experience in different areas and backgrounds.
You may meet one of the team in the foetal medicine department following the diagnosis of a congenital heart condition, where they provide parents with advanced specialist and practical information, along with counselling using their expert knowledge of babies and children with heart conditions. They are a point of contact from that moment onwards, through the decisions you make for you and your baby for life.
They can often be found on Ward 23 or the Paediatric Intensive Care Unit (PICU), otherwise they are likely to be supporting families in the clinic when they are in for follow up appointments. They are also present during the time the surgeon talks to families about any surgery that the child may need, so that they can answer any questions they may have. Jacqui has close links with the Great North Children’s Hospital (GNCH) and the gastro-intestinal team to co-ordinate optimal nutritional care for our cardiac children. This involves weekly nutritional ward rounds with a named consultant and attending external gastro clinics and multi-disciplinary discussions.
The team work in partnership with families to co-ordinate and facilitate needs through assessment, education, advice and support. They also liaise with the wider community teams such as local hospital, health visitors, community nurses and schools.
They run a weekly nurse led telephone clinic for more vulnerable and complex babies which involves an in-depth conversation and assessment of the baby’s condition in order to highlight any signs of early deterioration that may require hospitalisation.
They can take on average 40 – 60 telephone calls per day, not including emails and answerphone messages. Some calls are more urgent and they have to prioritise in order of needs of the child, although all messages are routinely checked throughout the day until 4pm.
They are here to provide you and your family with advice and emotional support during your journey.
In line with CHUF’s mission to support the children and their families we extend our support in many ways to the siblings of our Heart Heroes.
One way in which CHUF tangibly improves the time spent in hospital for siblings is through the provision of sibling packs. Containing colouring books, pens and activity books, siblings of Heart Heroes receiving treatment on our intensive care unit are given a pack to enjoy whilst at the bedside of their loved one.
CHUF has funded the cost of purchasing six state of the art ECHO Machines at Freeman Hospital at the cost of £340,000. They are now in service across all the clinical areas and providing much better diagnostic information for the doctors and surgeons to plan the best treatment for our Heart Heroes.
An echocardiogram, or “ECHO”, is a scan used to look at the heart and nearby blood vessels. It’s a type of ultrasound scan, which means a small probe is used to send out high-frequency sound waves that create echoes when they bounce off different parts of the body.
Use of ECHO machines outside of main cardiac centre has many benefits to the peripheral hospitals.
Babies and children including newly born babies in maternity unit are diagnosed more accurately, locally and within a shorter time frame. Wireless Echo images can be sent very quickly to the regional Centre for quicker diagnosis without the need for parents to travel around the region with poorly babies, thus reducing pressure on main cardiac centres. This reduces waiting times and enhances survival rates of children born with heart conditions, in both the regional centre and at the outlying units. Parents will feel confident that their child has been provided the most efficient care available in their local area. Diagnosis is a stressful period for all parents, we believe that early diagnosis helps relieve stress levels and the need for ongoing psychological support.
We are hugely grateful to our patron Graham Wylie who raised the funds at our annual ‘Have a Heart’ golf day.
Reconstruction and printing of 3-dimentional heart models for patients with complex congenital heart disease. The models can be used to plan the surgical approach in patients with the most complex congenital heart diseases. This allows the surgeon to adopt the best surgical technique whilst minimising cardiopulmonary bypass time with the anticipation of better long term cardiovascular outcome.
The process has been tried out retrospectively in one patient with a very complex congenital heart defect and received great feedback from the Chief Surgeon in terms of accuracy of anatomy.
3D reconstruction and printing also has great potential in training junior doctors, surgeons and has great education value for the patient and their family and other healthcare professionals involved in the care.
CHUF funded this service in January 2015 at a total cost of £48,600.
In October 2014, CHUF were thrilled to be able to unveil brand new parent’s accommodation in the grounds of Freeman Hospital after raising £1.65 million towards the project.
Scott House provides both emotional and practical support for families and contains 18 en-suite bedrooms and a transplant flat to help patients prepare to go home, as well as communal living areas including kitchen and dining rooms, lounges, playrooms and laundry facilities. Each private family bedroom has a direct telephone line to the ward so that parents can be contacted day or night should their child’s situation change. The Sick Childrens Trust provide ongoing support and management to the facility employing a dedicated House Manager and House Assistants who are on hand to ensure families are supported for the duration of their time in the house.
The name ‘Scott House’ was chosen to recognise the achievements of Anne Scott, whose tireless fundraising on behalf of her two daughters led to the founding of our charity now known as CHUF. CHUF was originally called the Lesley Anne Scott Memorial Fund after Anne’s daughter Lesley Anne, who sadly passed away in 1979. Lesley Anne was born with a congenital heart defect, as was her sister Lisa who also sadly died from the same heart-related condition. CHUF are delighted to recognise the vision and dedication of Anne Scott and her family in the name of the new house.
It’s important that each child thrives even while undergoing treatment. The dedicated Play Team provide a specific plan of play and development for each child to help them reach their full potential. Children also benefit from Ward 23’s exciting sensory and audiovisual room, as well as a bright, airy playroom, and a large play area for outdoor activities.
On January 11th 2009, Ivan Hollingsworth and his wife Nadine’s son Seb was born with a congenital heart defect. Seb was given lifesaving surgery and in September 2009, Ivan started to raise money for CHUF with the aim of reaching £333,000 to rebuild the playroom attached to Ward 23 and develop the outside play area. Ivan said: “Four years and four months after we raised our first few pounds for CHUF we hit this huge target – almost exactly five years after Seb was born. The rebuilding of the playroom and outside play area will bring a smile to Seb’s face and so many others like him”.
The play room is regarded as one of the best facilities in the country and CHUF are continuously fundraising to ensure the latest toys and facilities are available for our Heart Heroes to enjoy.
One day a week a beauty therapist visits the Children’s Heart Unit and pampers parents with massages and nail treatments. This provides parents with a moment to themselves , as they ordinarily give most/all of their time and energy to support their child. The beauty therapist also pampers children with face painting and glitter tattoos.
The Make me Sparkle programme costs around £3000 a year to fund, but the difference a weekly treat makes to the families of Heart Heroes and our Heroes themselves is invaluable.
CHUF have recently funded the purchase of three additional Chairbeds. 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.
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.
We’re delighted to have been able to appoint Debbie as Fontan Nurse Specialist at Freeman hospital, thought to be the first post of its kind in the UK! A huge thanks to Red Sky Ball and everyone involved fundraising towards this amazing new CHUF funded post. We are incredibly grateful for your support. Find out more about Debbie’s day-to-day role and how she’s supporting patients and families of those who have had or need a Fontan circulation operation here:
CHUF have funded an online application called vCreate. This is a secure video messaging service that will allow the team at the Heart Unit to send video updates to parents/carers at those times when they’re unable to be with their child.
Families are often separated during their child’s time on the unit and/or live outside of the local region of the hospital. vCreate will allow the parents/carers staying on the ward to update family members about their child’s care and recovery. It will also allow the staff on the unit to keep new Mums up to date with pictures of their newborn baby following transfer to the Freeman while Mum is still an inpatient in maternity.
Staff on the unit can add messages and updates to vCreate and everything can then be downloaded, following a child’s discharge, for the family to take home.
Children's Heart Unit Fund - CHUF
Nelson House, Fleming Business Centre,
Burdon Terrace, Jesmond. NE2 3AE.
CHUF is a registered charity in England and Wales No 1160831 © 2020.
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