Playteam

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.

Specialist Cardiac Liaison Nurses

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 a post was 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 5 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.

Discretionary charitable fund

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.

Specialist Fontan Nurse

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 a Fontan Nurse Specialist at Newcastle’s Freeman hospital, thought to be the first and only post of its kind in the UK!

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.

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:

CHD Nurse Specialist

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 them through the purchase of equipment to ensure safe and timely discharge.

Neonatal Specialist Physiotherapy project

In 2022, working with the specialist physiotherapy team at the Freeman Hospital, Chuf began to fund a pioneering research and development project. The aim of the project is to establish a developmental care team to support parents and promote skin to skin care for babies with congenital heart disease.

Thanks to innovative and world class medical and surgical interventions at the Children’s Heart Unit, many children with congenital heart disease are now surviving more complex heart defects. However, the implication on their development and quality of life, is also beginning to come to light.

Paediatric cardio physiotherapist Rachel McConnel, having had some experience working within the SCBU environment, began to recognise similarities between these children and babies on Cardiac PICU.

The research and development project funded by Chuf will help to establish a clear pathway for supporting Heart parents to touch, hold and nurture their poorly babies. Currently there are no other children’s cardiac centres in the UK implementing a programme to support parents of sick, post-operative babies in this way. It is hoped that through Chuf funding, the team at the Freeman Hospital will be able to implement change not only within the Childrens Heart Unit, but across paediatric cardiac care nationally.

‘When she was born, I only saw her for a few minutes and then she was taken to another hospital, whilst I had to stay where I was. I did not see her again until the next evening. I had the chance to do skin-to-skin care with her 2 days later. At this moment, I felt like she was mine. It was the first time I had properly smelt her and felt her warmth’ quote from parent.

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.