HEROES WANTED to be in at the beginning of this vital initiative and make a life-changing difference
The diagnosis of a brain tumour is DEVASTATING…
It is devastating for the patient
It is devastating for their partner, their children, their parents, their siblings
It is devastating for their wider family and friends who feel so helpless
For these people life will never be the same again
It is also devastating for the clinicians, surgeons, nurses and other professionals who have to deliver the news and do the best they can to treat and support the patient
It is devastating for the support groups who patients "may come into contact with"
It is devastating for the charities who try their best to support patients and resolve the issues of the brain tumour community
It is devastating for the scientists desperately trying to raise funds to undertake research to discover the causes, advance treatments and ultimately find a cure for brain tumours
At best an individual diagnosed with a brain tumour will have their tumour removed and their life can resume as normal, albeit scarred both physically and emotionally, at worst an individual diagnosed with a brain tumour will survive only days, weeks or months.
In the majority of cases, patients will undergo intrusive surgery and treatments that will give hope but leave them with side effects.
Many will go on to live with epilepsy, they may lose their driving licence, their jobs and their independence. They deal daily with the emotional and psychological effects that this devastating condition causes.
Partners and parents may have to give up their careers to become part-time, if not full time, carers.
What’s more, whether malignant or benign, both patients and carers are living with a time bomb…
However, advances are being made. UK brain tumour charities are formalising themselves and recruiting experienced staff; support is better than it was; funds are being raised and research is underway.
But, it is not enough…
Over the last fifteen years, individuals galvanised into action through the diagnosis or loss of a loved one, have formed charities to plug the gaps that they discovered along their personal journey of dealing with a brain tumour:
Setting up support groups
Establishing help lines
Giving financial assistance
Raising funds for research
Sadly, in reality, there are not many trying to do something about it.
The majority of brain tumour charities are entirely led by volunteers:
- They have a day job
- They have families to care for
- They have a life to lead
With the best will in the world, those who are trying to do something about it are frustrated.
There is not enough resource to do all of the things we’d like to do to resolve the issues of the brain tumour community.
Generally the only people doing anything about brain tumours are those that are motivated because they have been affected in some way, whether professionally or personally.
There have been tremendous advances over the last fifteen years, but even now, newly diagnosed brain tumour patients and their families don’t know:
Where to go for help
Where to go to find the information they need
and most importantly, can’t find the words they want to hear “There is a cure… it will be alright”.
Finding a cure for all types of brain tumours will not happen overnight.
It needs more years of dedicated research – if we are to achieve the same successes in treatments as have been discovered for diseases such as leukaemia, breast and lung cancer.
Finding a cure and resolving the issues needs heroes to get behind the cause and to raise awareness both within their own communities, companies and nationally.
Currently UK brain tumour charities raise around £2million pounds a year between them.
This total is a fantastic sum and goes to providing support and information and to funding research.
But, it is not enough.
We need the larger cancer charities such as Cancer Research UK and the government to increase funding into all brain tumours (including malignant, benign and secondary) at least proportionately to the funding that is received by the more pervasive cancers.
We need the newly established charity Brain Tumour Research to achieve its mission and raise at least £7million per annum.
We need heroes to be in at the beginning of this vital initiative and make a life-changing difference to this woefully under-researched area.