Welcome to the Brain Tumour Consortium website
The Brain Tumour Consortium is a coalition of brain tumour organisations including Brain Tumour Research, Brain Tumour UK, the International Brain Tumour Alliance, the Joseph Foote Trust and Samantha Dickson Brain Tumour Trust.
The aim of the Brain Tumour Consortium is to work together to campaign for improved brain tumour policy and services in the areas of support care and treatment; patient involvement and choice; and research. The three priorities identified from our Manifesto, for the Consortium this year are to ensure the Government prioirtises the following: |
Click here todownload ourManifesto |
Ensure early diagnosis and treatment
The problem: The diagnosis of a brain tumour is often delayed. GPs and A&E teams may not request scans early enough or scans showing possible abnormalities may not be promptly referred to a specialist neuroscience team. Not infrequently, GPs and A&E teams misdiagnose headaches, nausea and other brain tumour symptoms as migraines, stress or other illnesses.
Measurable solution: Ensure that clear guidelines on identifying the signs and symptoms of brain tumours, and on referring patients for rapid and appropriate assessment, are integrated into General Practice and Emergency Medicine Practice.
Benefits: Early diagnosis and treatment of a malignant brain tumour can significantly improve the prognosis for many patients, resulting in a better quality of life for longer.
Implement NICE’s best practice guidance
The problem: NICE published its Improving Outcomes Guidance (IOG) for Brain and CNS Tumours in 2006. The IOG is designed to be implemented over a three-year period but, to date implementation has barely begun. Furthermore, the IOG only applies to England and Wales. Consequently, patients face a postcode lottery in the standards of treatment, rehabilitation and care they can expect.
Measurable solution: Set a clear timetable in 2010, to fully implement and audit the Improving Outcomes Guidance, or its country equivalent, between 2011 and 2013.
Benefits: Everyone affected by a brain tumour will be diagnosed promptly and receive consistently high standards of treatment and care wherever they are in the country.
Increase Government investment in brain tumour research and more accurately measure numbers of both primary and secondary brain tumours.
The problem: Scientific research into brain tumours is under-funded. The UK’s brain tumour charities and partners are working hard to increase the amount of scientific research. But we believe that the proportion of Government research funding for brain tumours remains disproportionately small.
Measurable solutions: Publish, in 2011, a detailed breakdown of site-specific brain tumour research funding from the Government and ensure that by 2014 at least 7.5% of adults with primary brain tumours are enrolled in randomised, controlled clinical trials as part of their therapy.
Benefits: Research offers the only real hope of dramatic improvements in the management of brain tumours. The level of research falls well-short of the desired minimum standards. Action must be taken to change this.
The Brain Tumour Consortium members have agreed that by working together on specific policy issues they can more effectively achieve outcomes that will directly benefit brain tumour patients and their carers, friends and family. The Consortium brings together the individual organisations on campaigning and policy issues but also recognises that each has its own distinct identity.
The Brain Tumour Consortium has developed an advocacy strategy in order to influence Government in the most effective way possible. We will keep you updated and looking forward to working with your all in the future but if you would like to try to dovetail any communications you may wish to make with the coordinated campaign please feel free to contact the Consortium for advice.
