Caroline Batt and Ella Pybus

Meningioma UK was set up in 1999 as a patient support group by Caroline Batt and Ella Pybus to provide national support and information for meningioma patients like themselves: people diagnosed with, living with, or recovering from, a meningioma tumour, and their partners, families and carers. We asked ourselves, who knows better what it's like to be diagnosed with a meningioma or have to live with one?

This type of tumour, classified as grade 1, 2 or 3, is generally described as low-grade (or misleadingly as "benign"), can present many problems for us and for our doctors. Meningioma tumours of the brain or spinal cord are responsible for approx 33% of all primary CNS tumours. While meningiomas are generally easy to treat, some are not. But the diagnosis of any type of brain tumour comes as a huge shock. We all need help and support to come to terms with the news so we can get ourselves and 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 to you, what treatments are available, and to help you feel better about yourself and your brain tumour journey.

Meningioma UK maintains links with other brain tumour organisations including Cancer 52 (for rare tumours), and the Cancer Campaigne Group CCG, Brain Tumour UK, THe IBTA (International Brain Tumour Alliance), and AMNET for Acoustic  Neuroma network.  We are actively involved in advocating more research funding and better care for all brain tumour patients and carers.