Caroline Batt and Ella Pybus

Meningioma UK came to life in 1999 as a patient support group set up by Caroline Batt and Ella Pybus as a national support resource for meningioma patients like themselves - people diagnosed with, living with, or recovering from, a meningioma tumour. We asked ourselves, who better to know what it's like to be diagnosed with a meningioma or have to live with one?

This type of tumour, described as "benign" which most meningiomas are, can present many problems for us and for our doctors. While most meningiomas are easy to treat, some are not. But the diagnosis of any type of brain tumour comes as a huge shock. We need help and support to come to terms with the news so we can get our lives back on to an even keel again.

When first diagnosed, we are overwhelmed and often in a state of shock, disbelief or denial for some time. Brain tumours are rare so it's not surprising we know little or nothing about them at first. We seldom know what questions to ask. Sometimes we are afraid to ask questions for fear of what the answers might be. Our Meningioma Questions Guide offers a choice of 20 questions so you can be more confident when you talk with your medical team, your consultant or your GP.

We aim to help you understand what being diagnosed with a meningioma means for you, what treatments are available, and to help you feel better about yourself and your brain tumour journey.

Caroline and I are also trustees of Brain Tumour UK, the national charity for all types oif brain tumour. Meningioma UK has links to other brain tumour organisations. We are actively involved in advocating for more research funding and better care on behalf of all brain tumour patients and carers.