Where your money goes?
When your child is diagnosed with a life-changing illness, it's overwhelming, it's terrifying, and it's lonely.
The reality is that despite incredible medical expertise and treatment from the NHS, there's a gap of emotional and mental support available to families impacted by these life-changing diagnosis.
Could you help us and
become a life-changer?
That’s why we established the Julius Jones Trust, which is the only UK charity dedicated to funding life-changing well-being support when it’s needed most.
When you support the Julius Jones trust, you hold out a life-changing hand of comfort, reassurance, and much-needed support to a whole family.
But this is only the beginning.
Could you help us and become a life-changer?
Help us create our first Julius Ward
Addenbrookes hospital have provided space for a new Julius Ward that will be the first extra pediatric
capacity on the site in 25 years. The Julius Ward will provide more suitable space to cater for their specific
needs, enabling the provision of better, high-quality specialist care to the increasing number of children with
long-term conditions, such as those requiring home ventilation and nutrition support. It will change lives for so many children and their families - but we need your help to do this.
The children being treated there have complex and varied underlying health conditions, including chronic lung, airway and gut diseases. This means they require specialist treatment and care, which in turn has a significant impact upon the child and their family.
At present, children needing long-term ventilation can spend around 3-6 months in hospital at any one time, primarily on the Pediatric Intensive Care Unit (PICU). Treating children in this high stress environment for such long periods invariably has a negative impact on them and their family. They are surrounded by other children having to tolerate invasive and often emergency procedures, all of which can be extremely scary. And there aren't any beds for parents to stay alongside children on PICU, meaning they can be quite isolated from family and friends, with much less opportunity to just be a child.
Families will often need to spend months at a time alongside children in hospital, yet at present visits to PICU can be more restrictive than other areas, given the extent of the extremely sick children on the ward. And parents are often in the position of having to make serious decisions about their child’s care in this environment, while also getting used to a complex medical terminology.
This is in addition to their role in providing day to day care to their child, alongside often coming to terms with the reality of a significantly changed future for their child too. They may be trying to cope with all of this in a very challenging environment, away from comfortable areas of rest, at distance from friends, family and support networks.
Whilst the NHS continue to provide the very best medical and nursing care to children, they are currently unable to address the important wider needs of children and their families.
That’s why we have set up the Julius Jones Trust, because no family should face this journey alone.
Providing holistic care for the whole family
Through the implementation of Julius Wards, the Julius Jones Trust will create the optimum environment and provide a team to deliver the holistic family wellbeing service we know these families desperately need. Essentially, we're creating the blueprint for exceptional holistic family care for those who need it now.
Creating the right environment
For children and their families who are going to spend months at a time on the ward, we want to improve the environment, as we know that this can have a positive impact on wellbeing. So our priority is to secure fund to develop the following.
Decorating the ward to make it family friendly.
This will be incorporating interactive wall space for Children as well as an arts and crafts area. This will allow the children to engage in creative learning activities which is important for chilrens spending long periods of time at a hospital. Purchasing furniture that will allow families to stay comfortably alongside their children whilst also relaxing in the ward. We will also explore the possibility of having a dedicated bedroom for families.
Purchasing training equipment that will allow us to teach parents how to care for their children at home, making transition an easier and quicker process.
Can you help us?
Building a family wellbeing team: Team Amazing
To support children and their families we want to build a team that will consider the whole picture, not just the illness. And with your support we can build a dedicated family wellbeing team for our ward, to include:
A Psychologist will work with the child and their family to help them understand and adjust to a new diagnosis, through to the establishment of long-term care in hospital and transitioning home. Every child’s needs are different and psychological support can make a huge difference in coping with challenges throughout their journey.
Traditionally, psychological support for children and adults has been kept separate. However, we know that anxiety and depression is extremely common in this population of parents. With dedicated psychological support, we can offer evidence-based interventions which will positively impact the whole family. This is a completely novel approach.
For those children and parents with severe mental health needs, support from a psychiatrist willprove an invaluable resource. As well as providing a different range of therapies to the psychologists, they will be able to provide further diagnostic opinions. This could, for example, prove crucial in relation to those children with neuro-developmental issues.
Family Support Worker
A Family Support Worker will support families’ wider needs and help navigate the often complex demands they face. They will work with children, parents and family support systems to ensure that the correct support is in place in the hospital and the community.
An Occupational Therapist will work with families to ensure that a child’s physical needs are fully understood and can be met as soon as they return home, allowing them to be discharged from hospital as early as possible. They will help them to build a new routine, access additional support in their community and signpost to information sources.
A Play Therapist will use play as a therapeutic tool to support children and their families while they are in the hospital. They will use play to help prepare and distract children for procedures, provide age-appropriate information for diagnosis and treatments, and use different therapeutic play techniques to help children explore their feelings and create positive experiences, despite the tough times they can face in their care.
It is critical that we can demonstrate the impact of this pilot project, in the hope that holistic family care will become commonplace across the NHS. To achieve this, we will embed research into the project. On a day-to-day basis, this will be led by an Assistant Psychologist who will implement the research protocols that will allow us to monitor the pilot’s progress and evaluate its outcomes.
Senior Academic Supervisor
As covered above, the Assistant Psychologist will lead the evaluation of the project on a day-to-day basis. However, it is crucial that we have senior academic supervision on the project. They will support in the development of the research protocols and ensure that the project takes the wider research landscape into account.
The Project Lead will co-ordinate the project on a day-to-day basis.
How you can help
Your commitment now would ensure that families and their children with some of the most complex needs in hospitals can access the level of support they need. This will give them the very best chance to manage the impact of their illness and maximise their quality of life. It's critical that we implement this as a long-term and sustainable service, bridging the gap to delivering this aspirational level of care. This will also allow us to build the evidence base to prove the benefits of such a unique service, which will then be a model for the whole UK.
Our mission is to have a Julius Ward in every hospital; please help us make the first steps.
Become a life changer
Our mission is to expand this services across the UK. And creating this new Julius Ward is just the start towards revolutionising the way we care for children and their families in NHS hospitals across the UK.
We would be delighted if you would could support our vision to develop a unique holistic family wellbeing service. It will be the first step in embedding a life-changing wellbeing service into every family and patient pathwway.
Talk to us to find out how to become a life changer by contacting
The Julius Jones Trust at: firstname.lastname@example.org
Life changing prizes for life changing NHS support
Each entry into the Win Amazing prize draw offers you the chance to win incredible, life changing prizes, like a house, car or cash. And what’s even better is that 100% of the proceeds are invested back into the NHS, via The Julius Jones Trust.
So, why not enter today and do something amazing.