As a member of staff at the UK based brain tumour charity ‘The Joseph Foote Trust’ I am constantly fighting a battle with the public, health professionals and government officials to educate and inform them of the extent of the brain tumour problem. Sadly, it is the case that unless you know someone who has been directly affected by a brain tumour you are more than likely will not know the scale of the disease.
When out on the street fundraising, we often pose the question to people; what do you think the five year survival rate is in the
for brain tumours? Their answer; a shrug of the shoulders or perhaps a distant guess. They most definitely do not expect to learn that the five year survival rate in the UK UK is 15% or that more children and adults under 40 die of brain cancer than any other cancer in the . They are simply unaware of The Silent Killer. UK
So what is the consequence of this lack of awareness?
For the 48,000 families that are affected by a primary or secondary brain tumour in the
every year, not knowing anything about brain tumours prior to diagnosis serves to compound the desperation and angst in the immediate aftermath of receiving a diagnosis. It makes the disease feel mysterious and alien. Families are not aware of treatment possibilities, survival rates and the support available. They often feel alone, trying to confront this strange disease that perhaps a week ago they knew nothing about. I am sure this is a feeling that many carers may relate to. UK
Once families come to terms with diagnosis, they face yet further frustration with the lack of brain tumour awareness. As a result of poor public, government and health professional awareness, those caring for a brain tumour sufferer must come to terms with the fact that less than 1% of the NHS (National Health Service) research grant is directed towards brain tumour research. Put simply, they must come to terms with the reality that as a result of poor awareness of the disease the prognosis of their loved one is likely to suffer greatly. It is at this point they realise they wished everyone in the world knew about the scale of brain cancer suffering; about the lack of funding for research, treatment and support.
What can we do to bring about change?
We must all understand that this really is a case of every little helps. Bit by bit everyone can make a difference. Whether it is telling your family and friends about the disease, putting up posters in public places, writing to your local government representative or simply sharing links and information on social networking sites such as facebook and twitter. Together we can slowly start to chip away at the problem.
If we think smart rather than hard we can make an even greater difference. Do you or someone you know have connections to the media, a minor celebrity or a local business? By communicating a message to someone with the capability to speak to the masses your message can be broadcast to a wider audience. In the
UK we have recently seen the case of a wonderful young boy Harry Moseley (aged only 11) from Birmingham who through his use of the media and celebrities has significantly raised the profile of The Silent Killer in the . Before his recent death, Harry was frequently featured in the press, on the TV and radio and used his twitter account to communicate with high profile celebrities on a daily basis. He has made a fantastic contribution to the brain tumour community through his work. UK
So what do we tell people?
This is the simple part. Together we can tell people the things you would have liked to know when you were first thrust into the brain tumour world. Is something being done about the disease? Am I or my family alone or are there many others like me? Could the signs of the cancer have been spotted sooner? Who is available to help? Where can I seek advice, support and care?
Together by generating brain tumour awareness, we can do our bit to combat The Silent Killer.