"Life is still to be enjoyed, even if life is challenging and a loved one is unwell."
Sara, whose husband Neal was diagnosed with a glioblastoma in 2002
Enhancing care and quality of life for everyone affected by a brain tumour, including patients and carers
Being diagnosed with a brain tumour is a life-changing event and there are currently over 55,000 people living with the condition in the UK. The symptoms of a brain tumour are profound, ranging from headaches and problems with coordination, to changes in personality and the ability to communicate. Treatments can be toxic, with significant side effects. All of this can have a significant impact on social, physical, functional and emotional well-being. Treating and managing the effects of both the tumour and the treatment is a difficult process that presents many questions for researchers.
There are currently limited interventions available to enhance quality of life for those affected by a brain tumour. Most patients are not being monitored to assess the impact of the long-term effects of their tumour and treatments on their quality of life.
For children, brain tumours are often developmental conditions and have long-term outcomes that vary from full recovery to profound and multiple learning difficulties and severe diasbility. We want to change this, so it is necessary to assess the differences in outcomes.
Research is traditionally focused on increasing overall survival and stopping tumour growth, with little regard for the side effects. This has meant that the quality of life for those without long to live has been ignored, as has the long-term side effects for those that survive. We need a better understanding of the borad effects of different tumours and their treatments and to be able to make improvements in treatments and management of care.
We want everyone affected by a brain tumour to have access to the very best care and treatments available. Unfortunately, there are significant variations in the quality of care and available treatments throughout different regions of the UK, meaning that patient experience is varied. We want to change this.