A children’s charity has started a new service to give mental health support to children with brain tumours in the North West, as well as their families.
Tom’s Trust is the UK’s only charity dedicated solely to providing psychological support for children with brain and central nervous system tumours and their families.
The charity recruits expert psychologists into established hospital settings to work alongside a child’s medical professionals, ensuring they have the ongoing mental health support they need at every step of their journey with a brain tumour.
The charity is opening its third service this month at Alder Hey Children’s Hospital in Liverpool, adding to its other services at The Great North Children’s Hospital in Newcastle and Addenbrooke’s Hospital in Cambridge.
The charity has recruited a team of two clinical psychologists and one assistant psychologist who will improve the lives of these families, ensuring they are offered the coping mechanisms and a space to talk throughout their journey with a brain tumour, whatever the outcome.
This will increase the opportunities for families to access a psychologist who can support them from diagnosis, throughout treatment, and help them as they navigate a ‘new normal’ while returning home and back to school.
James Hayden, Oncologist at Alder Hey Children’s Hospital, said: “We are so grateful for the support of Tom’s Trust because rehabilitation is so important immediately after a brain tumour diagnosis, and not just waiting until after the medical treatments are over. Patients need to immediately have access to this support and with Tom’s Trust’s funding we can now achieve this. We offer wraparound support meaning we help the whole family including parents and siblings too.”
Anna Kearney, Senior Clinical Psychologist at Alder Hey Children’s Hospital, said: “Lots of our aims are how we improve access to psychological support in a timely way, and being more preventative and proactive. Unfortunately we’ve been building up a waiting list and it’s hard to be as responsive as we want to be for our families. With this funding we will now have Tom’s Trust clinical psychologists who can do just that.
“Up until now we have had to prioritise supporting the child and immediate caregivers but with this funding we’ll be able to help other members of the family more often, like siblings, with the hope of setting up family workshops in the future and therapeutic groups, something which we’ve previously not had the resources to do. We’ll also be able to screen for those who might need more intensive and one-to-one support. Supporting children on their return to school is also essential as one of the biggest things they can miss is their friends, while also ensuring they have appropriate learning support in place.”
There are approximately 43 children and young people diagnosed with brain and spinal tumours at Alder Hey Children’s Hospital each year. Only children who continue to be high risk, around 65 children, are currently seen each year by psychologists. Currently 75%-80% of patients are children who are five years post-treatment at Alder Hey, who only get help after expressing that they are having significant difficulties. With 62% of child brain tumour survivors being left with lifelong disabilities from their tumours and treatments which require ongoing help, the new funding will greatly improve the lives of long-term survivors in the area.
Tom’s Trust’s psychology services will be able to help an estimated 100 further families through a variety of interventions.
Tom’s Trust is funding two part-time clinical psychologists and an assistant psychologist, who will be making staggered starts over the next few months. Clinical Psychologist Meghan Owens has already started the role.
Meghan said: “I have always had a passion for working with children and young people who experience chronic health conditions and their families and have a specific interest in neuro-oncology work. It has been amazing hearing about the work of Tom’s Trust, and I am very much looking forward to working with the charity to support high levels of care for young people with brain tumours and their families, as well as helping to drive the vision of Tom’s Trust forward.”
The charity was founded by Debs Mitchell and Andrew Whiteley after they lost their son Tom to a brain tumour, aged nine in 2010, when little support was given to them as they navigated his terminal diagnosis.
Now as the charity expands, within the new service’s catchment area, there are regions with high levels of socio-economic deprivation, with Liverpool considered the fourth most deprived local authority in England. As a result, the new service will serve a population with high levels of psychological need and complexity at a time when families need it most.
Alongside the three new psychologists, Sarah Hampton, Tom’s Trust Regional Fundraiser and Community Development Officer, will support the team in Liverpool, to ensure the charity raises the £130,000 it costs per year to provide the service at Alder Hey.
Sarah said: “I’m so thrilled to see the service starting and the work we do at Tom’s Trust will make such an impact on the lives of these wonderful families in the North West. I would be so grateful to hear from any fundraisers, donors or local businesses who would like to help us provide this incredible service. Please get in touch if you would like to support us or hear more.”
Rebecca Wood, CEO at Tom’s Trust, said: “We are so proud to be able to help families living with a devastating brain tumour diagnosis and its effects in the North West. We know this highly specialised team will make a positive impact on the families who so desperately need this vital support. We are now making headway to open a fourth centre to help even more families across the UK.”
Tom’s Trust, which is the only UK charity dedicated solely to providing mental health support to children with brain tumours and central nervous system tumours, is also offering small grants to support the development of work by all psychologists in the UK treating these unique families.
To find out more about Tom’s Trust go to www.tomstrust.org.uk