At the Cross Party Group on Cancer Meeting, held in The Scottish Parliament on the 12th of June, representatives from Brain Tumour Action spoke about the widespread lack of recognition and understanding of brain tumours which leads to a disturbing variation in patient and carer experiences.
Brain cancer is rare and often not well understood, even within the clinical community. Specialised interventions are needed at various points in the disease process and patients often have very complex needs which places a huge burden on carers. This is often accompanied by feelings of fear, guilt and isolation. The charities and support groups which exist are mostly small and do not receive any central funding.
First-hand accounts given by patient and carer representatives poignantly illustrated the difficulties they have encountered, often over many years.
There is an almost complete lack of wholistic, individualised care programmes and an urgent need to improve communication among clinical providers and social services within the community.
Brain Tumour Action calls on The Scottish Parliament to support their work.