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The Brain and Spine Foundation has joined other brain tumour charities to form the United Brain Tumour Campaign (UBTC). UBTC aims to improve the diagnosis, treatment and quality of life of people affected by brain tumours.

In order to evaluate the current situation, UBTC produced a survey of patient and carer experiences of brain tumour services. Over 100 questionnaires were returned and we are very grateful to everyone who was able to take part.

The results demonstrated that:

• a significant proportion of patients experience long delays in diagnosis causing considerable stress and anxiety;
• patients and carers are not given enough information to make informed decisions about their care;
• patients would like more information about the long term effects of their treatment;
• there is poor co-ordination between different service providers;
• patients and carers are not given the contact details of a health professional who can answer questions about their condition or treatment;and
• the majority of patients and carers would like to attend a support group.