Home monitoring equipment programme

Heart Heroes are often discharged under the care of the Chuf funded home monitoring programme.  Chuf fund Sats monitors and INR machines to support safe discharge and peace of mind for families and the medics caring for your Heart Hero.

The equipment Chuf funds is invaluable in providing reassurances to both parents and the cardiac team in detecting subtle changes in condition, which may require the Heart Hero to be admitted to hospital and prevent further deterioration. It allows freedom of mobility on a day-to-day basis allowing the children to leave the ward with their parents or nursing staff without cumbersome equipment.

Please speak to the Liaison nursing team to discuss accessing this support.

Clown Doctors at home - Very Special Meetings

The Clown Doctors remain one of the most important services we fund at the Children’s Heart Unit 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 we have extended the impact of this service beyond the walls of the Freeman Hospital and have funded a programme of ‘Very Special Meetings’.

The virtual Clown Doctor programme is designed to continue the relationship our Heart Heroes foster whilst an inpatient and provide support to them at home whilst attending outpatient appointments.  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.

If you would like your Heart Hero to take part in Very Special Meetings please reach out to the Liaison nursing Team, Play Team at the Children’s Heart unit, or contact the Chuf office who will be able to support you with a referral into the programme.

Training to improve regional hospitals knowledge

Chuf work in partnership with the North East and North Cumbria Congenital Heart Disease Network to support improvements in cardiac care across our region and in recent years support the expansion of clinical education.

Chuf have funded a the state-of-the-art robotic which is revolutionising paediatric medicine in the North East and Cumbria.  SimBaby (or Nelle as we have affectionately called her) is an advanced simulator designed to help healthcare providers effectively recognize and respond to critically ill paediatric patients.  The SimBaby simulator looks and acts like a 9-month-old paediatric heart patient and provides highly realistic responses that meet specific learning objectives around initial assessment and treatment. Controlled by a trained educator, the new technology can simulate real life scenarios, allowing healthcare professionals to work effectively as a team to deal with life-threatening situations.

Nelle continues enhance the education programme across the region for all healthcare professionals, enabling them to confidently manage the care of children with congenital heart disease (CHD) and heart dysfunction, ensuring a safe pathway of high-quality care within the North East and North Cumbria.

Psychology research project

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 events to meet other Heart Families

We run an annual programme of events which are designed to provide opportunities for families to come together and celebrate their Heart Heroes journeys.

The annual Chuf Toddle provides an opportunity for our little Heart Heroes to challenge themselves to a one mile walk to support Chuf followed by an incredible funfair to celebrate at the end of the Toddle.  Whilst our annual Christmas party is a chance for families to come together at Christmas time to meet Santa, enjoy the festivities and celebrate.

To find out more about all of Chuf’s events please sign up to our newsletter and visit the events section of our website.

Transplant games

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 support the Freeman Children’s team to attend the British Transplant annually, covering entry costs, travel and accommodation costs for family.

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!

Access to Cuddle resources at home

Whilst in hospital you may have been supported by our cuddle champions led by Chuf funded specialist neonatal physiotherapist Rachel McConnel.  As part of our development of the Cuddle project Chuf have funded online resources which you may find helpful when you are at home with your Heart Hero.

Click on the links below to access videos and resources:

How to make a nest.

How to do a side lying nappy change.

Skin to Skin care.

How to do wrapped weighing.

Cuddle leaflet for parents

Nursery poster with QR codes.

Skin-to-skin care parent leaflet latest version