Being a terminally ill sufferer I don't have the capacity to write lots and lots in this space
, I have summarised and shared to certain figures of authority as to the difficulties faced currently. This should also help
both patients, carers and broader public. This is a large reason IMO why the situation in the UK is sub optimal and needless deaths
, including mine soon, are occuring.
At a time when my family and I desperately need appropriate support for this chronic illness our degree or stress,
our suffering is made worse due to some apparent shortcomings across the cancer life cycle. Sadly we are not alone,
a growing number of sufferers with the same cancer type as me are facing the same difficulties due to these shortcomings.
Each year a number of avoidable deaths occur and
also sufferers die leaving loved ones behind earlier than necessary. These shortcomings in summary are:
Current
colon cancer testing guidance is hopelessly out of date.
I and most others with BRAF, tend to be comparatively healthy 30 - 50 year olds who despite having stage 4 cancer do no fit
into the target population. Nor would would we fit into the slow 4 year planned expansion.
Current
colon cancer guidance on symptoms and stated increased risks of developing bowel cancer like me they are typically and almost exclusively: do
not fit with the profile
of sufferers with this cancer type.
Fit, energetic and well within healthy BMI ranges. For example I was a serious amateur cyclist not so far off of pro level in terms of fitness.
Ate a healthy diet, either did not smoke/ drink or if so we well within low weekly quantities and units. I for example never smoked and
drank a low amount
Do not have type 2 diabetes, inflammatory disease or family history of bowel cancer.
When this cancer (typically by stage 4) is diagnosed, we are treated with a care system in the UK that is 10 to 20 years behind the rest of developing countries:
NICE is slow to approve the usage
of new treatments for UK usage and therefore stifling access to life extending treatment options / treatment advancement
Standard treatment lines specifically for BRAF mutations (which currently carries a poorer prognosis, probably in part due to this) are limited.
Access to modern tests such as genology reports and modern treatments such as selective radiation therapy, badly needed to combat what is an
aggressive form of stage 4 cancer is limited.
The funding model for spend on cancer in the UK appears to be one dimensional and very far from taking a holistic approach,
considers simply the number of people diagnosed with that cancer type each year. Not taking account level of severity upon diagnosis
for the sufferer or their family, the trend in yearly number and probabilities of diagnosis, the degree to which support upon diagnosis
is fit for purpose vs that in other developed countries.
(1)
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