“It’s such a relief to feel seen and understood, and like there is someone in our corner to help communicate that with all the people involved in our child’s care.” A parent of a three-year-old child seen for neuropsychological assessment at Oxford Children’s Hospital.
Tom’s Trust is currently funding services across four hospitals – Addenbrooke’s Hospital in Cambridge, Oxford Children’s Hospital, Alder Hey Children’s Hospital in Liverpool, and the Great North Children’s Hospital in Newcastle, and we are planning our fifth hospital-based service, as well as looking at ways we can reach families on mass out of our hospital service model.
An update from our services:
Addenbrooke’s Hospital, Cambridge
At Addenbrooke’s Hospital we are developing a pioneering new pathway to pilot support for children moving from paediatric care to adult services. The role is the first of its kind. Our Assistant Psychologist has been introduced to support Young Adults in their move from paediatric care to adult care services. First Caitlin Gray, who is in the post, has been focusing on understanding the barriers and facilitators to a successful move, and looking at what frameworks and tools can best support Young Adults.
We are incredibly excited about Caitlin’s work. We know the position is so needed by feedback from families we have supported who have talked about how losing the familiarity with their child health services teams, paired with the loss of familiar support, guidance and understanding with their medical team and Tom’s Trust psychologist can be daunting time.
Since January the overall number of Children and Young People in the East of England who qualify for support aged between the age range of 12 to 17 is 85.
Oxford Children’s Hospital
We launched the Thames Valley service last October and since then the team, of Dr Emily Townsend, Clinical Psychologist (pictured) and Dr Jeni Tregay, Paediatric Neuropsychologist, who we fund for supervision and management time, has made a huge impact:
-They have seen a 200% increase in service provision (113 extra patient contacts) in the last four months
-All children on their waiting lists for cognitive assessment and therapeutic work have now been offered appointments.
The team is now working on ensuring that children already seen by the service have up to date follow-up cognitive assessments and are offered a greater depth of psychological support (up to 12 sessions of individual therapy) to children and young people with brain tumours, their parents, and siblings.
Emily has also been building relationships with the NHS team as well, organisations such as the Child Brain Injury Trust (CBIT) and Young Lives versus Cancer (YLvC) and the educational settings that the children she supports belong to.
Alder Hey Children’s Hospital, Liverpool
At Alder Hey we fund Dr Meghan Owens, Clinical Psychologist (pictured), Dr Nihad Mahama, Clinical Psychologist, and Anna Roberts, a Psychological Wellbeing Practitioner. As a team they provide therapeutic support for both inpatients and outpatients for children and their and families, neuropsychological assessments including contribution to national trials, and professional liaison with education and other professionals – both within Alder Hey and community teams.
In the last six months the team has provided 26 children with therapeutic support and has seen 13 for neuropsychological assessments – the results from this help to form a pathway of care and provide a benchmark for any future progress or decline. Tom’s Trust believes in supporting the whole family and so our team have also worked with 29 family members offering therapeutic support and three families have attended their group support sessions.
Great North Children’s Hospital, Newcastle
Dr Uschi Hiermeier started her new post as Tom’s Trust Clinical Psychologist in Newcastle last October. Uschi is funded by us, there are three key areas that she focuses on:
-Research: collaborating on a UK data collection project for European trials in paediatric neuro-oncology
-Clinical work: offering personalised therapy and neurocognitive assessments for children with brain tumours and their families
-Group work: designing online workshops for parents and caregivers of young brain tumour patients.
Uschi provides personalised support and therapy to individuals, tailoring her approach to meet the unique needs and circumstances of each client. This also includes neuropsychology assessments at baseline and follow-up, which includes detailed reports, and often liaison with school and other organisations or services around the child.
The group work aspect of Uschi’s role involves designing and facilitating workshops and sessions that encourage group participation and interaction. The first session launched has been ‘Making friends with uncertainty’ – a six-session, evidence-based online parent group. Originally developed by Newcastle University and Newcastle Upon Tyne Hospitals Primary Care Service, the content has been slightly adapted to meet the needs of parents with children with brain tumours.
The impact of our work
A parent of a 15-year-old child we support at Alder Hey Children’s Hospital sent us in this feedback that really shows the breadth of how our clinical psychologists support the whole child and the impact they can have:
“Just a quick note to the charity- I understand that funding is in place for the neuro oncology psychology department I wanted to let you know how vital this has been for my daughter and our family. My daughter was diagnosed with a brain Tumour in April 2022. Since then, she has made a really good recovery overall, however she has struggled with her mental health, and it had become noticeable she was struggling with her memory too. We were referred to this department last year and she has built a great relationship with her clinical psychologist, and I cannot thank her enough for the help to deal with her worries.
“During the sessions I had mentioned to her clinical psychologist that she does struggle with her memory and before I knew it her clinical psychologist had arranged some additional testing, something I had been trying to get for her for a long time. It was such a relief that we were finally able to understand how she would learn easier. The clinical psychologist even made the trip to attend a meeting with her school, as for the last two years school have been struggling to understand what support she needed in place. This could not have come at a better time as she will sit her GCSEs this summer.
“I will be forever grateful for the help and support received from this department, especially her clinical psychologist. From day one her clinical psychologist took the time to get to know and understand my daughter, and understood that she has so much potential, however just needed a little bit of extra support. Thank you so much to you all.”
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