Care in the North East
Tom’s Trust has been funding clinical psychology for children with brain tumours at the Great North Children’s Hospital, which is under Newcastle Upon Tyne Hospitals NHS Trust, since September 2019. We are so proud to have been able to fund support for 138 children and their families in the North East, with an additional 35 families on average needing our support in the region every year. Through our work at the Great North Children’s Hospital, Tom’s Trust has been able to help children from Cumbria to Teeside, Yorkshire and Scotland.
Leading treatment in the UK
The children and young people’s haematology and oncology service at the Great North Children’s Hospital cares for children and young people under the age of 21 who have cancer, leukaemia and other related diseases. The department is one of the largest, most advanced in the UK, providing a comprehensive range of leading edge oncology services, including chemotherapy, radiotherapy and surgery. It is the Regional Treatment Centre for all of the Northern region, treating patients from as far west as Cumbria and north to Scotland. The service is at the forefront of national work to improve the long-term follow-up care that is provided for young people who were treated for cancer and leukaemia in childhood.
Clinical psychology for children with brain tumours
The neuro-oncology psychology team is partly funded by Tom’s Trust and partly by the NHS. The psychologists work within a very close-knit multi-disciplinary service. This team working promotes valuable communication and collaboration between clinicians to ensure that patient care is well coordinated and each family feels as supported as possible. The psychologists within the team provide tailored emotional and psychological support for patients and their families. This may include issues such as; coming to terms with a diagnosis, helping with procedural distress, promoting effective coping skills to support ongoing treatment, as well as supporting siblings and parents.
The psychologists carry out detailed neurocognitive assessments which helps to identify how a child’s thinking (including attention skills, memory and processing speed) may have been affected by their diagnosis and treatment. This enables the psychology team to liaise very closely with schools to ensure children are reintegrated into the classroom effectively with tailored learning strategies. Their progress is monitored after treatment is completed to assess for any cognitive late effects that might develop in the future.
Ambassador Group 2021
This year, the Clinical Psychology team at the Great North Children’s Hospital started a virtual Tom’s Trust Ambassador Group. This is led by Tom’s Trust Lead Ambassador, Emma Smith, who is 15, and supported by Dr Sarah Verity, Paediatric Neuropsychologist, and Uschi Hiermeier, Assistant Psychologist.
The group aims to provide a confidential, safe space for children with diagnosed with a brain tumour to share experiences, helpful tips and their favourite emojis. The group discusses a different topic every month including ‘returning to school’ and ‘dealing with new diagnoses’. The team plan to continue running these groups monthly in the future. The group has shown great potential to not only facilitate a safe space for the children to reflect on their journeys with brain cancer but also build self-esteem and confidence.
Case studies from the Great North Children’s Hospital
At the age of 12 years, B was diagnosed with a large germ cell (brain) tumour and associated obstructive hydrocephalus. B underwent surgical resection of this tumour followed by chemotherapy and focal radiotherapy. Routine neuropsychological assessments measured B’s cognitive development whilst identifying areas of strengths/weaknesses. In turn these results helped reintegrate B back into the classroom and tailor learning strategies.
B said: ‘I found the puzzles helped me understand and interpret how the treatment may have affected me. It was also reassuring that the difficulties I had in class weren’t just me and I was able to get support.’
Now 17 years-old, B is doing a training course at college, and working in hospitality as part of his course. He is really enjoying it and we wish him all the very best for his future career!
C was diagnosed with a high-grade posterior fossa tumour (metastatic medulloblastoma) and obstructive hydrocephalus at the age of 10. C underwent complete surgical resection of the tumour followed by six weeks of craniospinal radiotherapy as well as high dose chemotherapy. C was seen two years following this treatment to measure his cognitive development and identify any areas of cognitive difficulty.
C said: ‘I found the puzzles fun and exciting! It was useful to know how I think and how treatment may have affected me.’
The results of his neurocognitive assessment were discussed with his school and learning strategies tailored to support his studies. His teachers found this very helpful. We wish C all the very best for the future!