Being part of the CHUF family helps people to achieve their dreams.
Being part of the CHUF family helps people to achieve their dreams.
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 and resuscitation training manikins. This is all in addition to infrastructure costs for the parents’ accommodation and playroom.
Our families come from all over the UK!
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) a system designed to help them:
• 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 ten 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; it is 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 recently 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 will be used to plan the surgical approach in patients with the most complex congenital heart diseases. This will allow 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.
The 3D reconstruction and printing also have great potential in training of junior doctors, surgeons and have 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 a moment to themselves for parents, who give most/all of their time supporting their child. The beauty therapist also pampers the 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:
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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