Brain Tumour Manifesto for Action

A document of intent signed by Brain Tumour UK , The Samantha Dickson Research Trust, The British Brain Tumour Association, British Brain Tumour Association, Charlie's Challenge and Diana Ford Trust

The Diana Ford Trust

Action on Public Awareness

We call for a campaign that challenges the notion that brain tumours are a rare form of cancer and educates society regarding the profound and complex impact brain tumours have on the lives of those affected.

Each year in the UK , 5000 adults and children are diagnosed with primary brain tumours. Twenty percent of all cancer patients develop secondary brain tumours. They are, alongside leukaemia, the most common solid tumour in children. The incidence has increased over the last 30 years yet the prognosis remains bleak.

Action on Research

We urgently require the Government to critically review their Cancer Plan in light of the disproportionately low investment in clinical trials and research into brain tumours.

Action on Care and Treatment

We call for timely and correct diagnosis. We call for care and treatment delivered by a multi-disciplinary team, of a consistently high quality across the UK . There is a serious shortage of neurologists, neurosurgeons, neuro-oncologists, specialist nurses, physio, occupational, speech and language therapists. Significant investment in recruitment and training is required. We call for models of care that give patients real choice over the health and social care they need.

Action on Support

Each patient has a right to the highest quality of life, whatever his or her prognosis. The patient and those close to them must have access to the most appropriate treatment and resources of practical, emotional and social support at the point of diagnosis. We call for a stock take of the needs of brain tumour patients and state of services available.

We call for a co-ordinated and comprehensive range of services that are of a consistently high quality and responsive to the specific needs of each patient and those close to them.

Action on Information

Brain tumour patients and all who care for them have a right to accessible, relevant, up-to-date and understandable information that enables informed choices about treatment and care.

We call for a central database of information on incidence, treatment, outcomes, research, clinical trials, needs, services and general information about brain tumours. This central repository should also provide links to other places where beneficial information can be found whether it be held locally, nationally or internationally.

Action on Teamwork (Joined up Working)

We call for better collaboration and communication between members of the brain tumour community, government and the public sector to achieve the actions of this manifesto. We believe that mastery of this disease, its biology, causes, prevention, treatment and "living with it" can only be achieved by working together.

Dated: February 2005