First ever UK-wide study on childhood brain tumour services launched at Great North Children's Hospital
by Emily Gray · ChronicleLiveA pilot year-long project studying the inequality in access to psychological care within childhood brain tumour services, and the implications on access to clinical trials, has been launched by a team at the Great North Children’s Hospital in Newcastle.
The unique project has been funded by children’s brain tumour charity Tom’s Trust - the UK's only charity dedicated to providing mental health support to children and young people (CYP), with brain and central nervous system tumours, and their families.
The project aims to understand the differences in resources across all UK primary care trusts for children facing a brain tumour diagnosis, outline unfunded areas and identify where there are unmet needs, and explore options for future neuropsychology data collection for brain tumour trials.
The project will additionally explore online support groups and education sessions for parents, siblings, and survivors. The pilot phase is a year, and then the hope is that Tom’s Trust will be able to secure funding to move the project into the next phase of development.
Approximately 500 CYP aged 0-19 are diagnosed with a brain tumour each year. Many experience serious mental health issues as a result of their tumour, and 62% of those who survive will then live with life-long disabilities.
Rebecca Wood, CEO of Tom’s Trust, said: "We are excited to fund this project, led by Dr Sarah Verity, at the Great North Children’s Hospital. We know there are huge differences in the care that children with brain tumours receive across the UK and Tom’s Trust strongly believes that every child with a brain tumour should have access to the mental health support that they need, as well as their loved ones.
"Many children experience serious mental health issues after their tumour and treatment, and 62% of those who survive will then live with life-long disabilities. Family members are also put under huge stress, with siblings left really struggling too.
"We know the output of this pilot project will produce very important and helpful data that will allow us as a charity to understand how we can improve survivorship for these children.
"A key part of that improvement in mental and cognitive health is access to clinical trials that can improve quality of life; that can’t happen for many youngsters around the UK as they can’t receive the psychological assessments they need, to assess how interventions are working."
Dr Sarah Verity, Paediatric Neuropsychologist at the Great North Children's Hospital - who is leading the project - said: "As research and knowledge about the impact of childhood brain and central nervous system tumours advances, we believe that so should our services. It is now widely accepted that children with brain tumours are at high risk of behavioural, learning and psychological difficulties both as a direct result of the tumour, and the treatment.
"In addition, the diagnosis has a significant impact on parents and siblings, because of stress, uncertainty, upheaval and changes to daily life. Consequently, each child and young person diagnosed with a brain or central nervous system requires specialist psychological and neuropsychological assessment, and where needed, therapeutic support.
"This assessment and treatment can take place either at hospital, in school or at home, with the aim of maximising opportunity for participation in everyday life and meeting their full potential in the future. Psychological input for parents and siblings is also vital to alleviate distress and promote emotional wellbeing within the wider family."
Dr Sarah ended: "This project will enable us to understand the outcomes of the treatments that we use, move closer to all eligible patients being able to access trials, and scope the current availability of clinical psychology for children with brain tumours, their siblings, and family members across the UK. Only when we know the situation can we make moves to improve the inequalities in the system."
To find out more visit Tom’s Trust.
Join our WhatsApp communities
ChronicleLive is now on WhatsApp and we want you to join our communities.
We have a number of communities to join, so you can choose which one you want to be part of and we'll send you the latest news direct to your phone. You could even join them all!
To join you need to have WhatsApp on your device. All you need to do is choose which community you want to join, click on the link and press 'join community'.
No one will be able to see who is signed up and no one can send messages except the ChronicleLive team.
We also treat our community members to special offers, promotions, and adverts from us and our partners.
If you don't like our community, you can check out any time you like. To leave our community click on the name at the top of your screen and choose 'exit group'.
If you’re curious, you can read our privacy notice.
Join the ChronicleLive Breaking News and Top Stories community
Join our Court & Crime community
Join the Things to do in Newcastle and the North East community
Join our Northumberland community
Join our County Durham community
Join our Great North Run community