We want to provide support and reduce suffering for children who receive the devastating diagnosis of a brain tumour, and their families. Our three main aims are:
1) To support children suffering from brain tumours (especially rare/unusual presentations) and their families.
- Developing an information toolkit that can be to given families on initial diagnosis which will help them find useful information relevant to the condition, as well as pointers to where they can receive further help—for example, good quality websites and other charities. We want to provide information on obtaining access to grants and services, such as disability living allowance and charitable services, such as EACH, which can support families through difficult times. There will also be information focused on the local care setup between NNUH and Addenbrookes.
- Looking at how we can provide an advocacy service to families that will provide guidance and specialist knowledge and will work to help the family understand their options, seek second opinions and ensure that communication between all services is as clear as possible. We hope that this will be in the form of a specialist role that is independent from the hospitals involved but that can ensure that a good relationship is maintained.
- Providing small grants (currently £300) as financial support for families in the initial diagnosis period. This is intended to assist with costs associated with a stay in hospital, such as car parking, food, emergency accommodation etc.
2) To support and fund research into childhood brain cancer and potential treatments through grants to research teams and support of umbrella organisations, such as Brain Tumour Research
- We have recently provided a grant of £5000 to support research in to a new MRI scanning technique for children with brain tumours, which should ultimately increase the speed and accuracy of diagnosis and therefore treatment. It can also be used effectively in cases where a biopsy is too dangerous to obtain and may also be able to replace traditional biopsy altogether one day.
3) To raise awareness of the disease and it's debilitating effects and to campaign for improvements in the current standard of care and support available, as well as for more research