The Doctor Will See You Now
There seems to be a running theme in the last few months, everyone appears to have lost their motivation, me included. After writing my previous blog post at the beginning of June I had written in my planner when I wanted to blog more, and I had even noted some ideas in my phone about more topics I could delve into while sitting around in London, waiting for my ovaries to cook up some eggs. The only genuine excuse I had for not posting the following week was that I actually had the procedure done, and the last thing I felt like doing was writing a blog post while my uterus felt incredibly bruised. For anyone wondering and who didn’t hear the news, I’m pretty sure I’m now a world record holder for the most amount of eggs taken during a collection, with a whopping 65 being collected and 57 of those eggs being mature enough to be frozen (on average, around 15 would be collected, with around 9 being mature enough to be frozen for future use). I could literally raise an army of lazy-eyed babies if I wanted to, but I don’t want to go mad with power just yet.
This week however, I’ve had some interesting conversations with members of The Brain Tumour Charity Young Adults group on Facebook about the constant misdiagnosis of brain tumours, and wanted to focus on changes in GP surgeries and the overall NHS that I would like to see. Brain tumours are an incredibly complex type of cancer, with only tenuous links and ideas about what causes them other than your cell mutation going awry, or even being affected by background radiation from the Big Bang all those years ago. While medicine has come a long way and new clinical trials are being reported on, GPs appear to be overlooking the symptoms of brain tumours for months on end, with some patients waiting YEARS to be diagnosed. In my journey to raise awareness for the neglect brain tumour patients are accustomed to pre-diagnosis, I’ve even written to Downing Street and have been in contact with the Department of Health and Social Care to speak about what changes I think should be necessary in improving diagnosis rates and survival rates.
1) A 3 Month Maximum
On average, a GP may only ever come across 1 or 2 patients with a brain tumour diagnosis, so from the beginning it is easy to see why our symptoms are being ignored for extended time periods. One of the most common symptoms of brain tumours are headaches, which seem to be a symptom that is looked down upon in any diagnosis, as if it is normal to have a headache with every single ailment in your life. I remember entering A&E in Ipswich in tears over my headaches, but the second I mentioned it was a headache that brought me through the doors the nurse’s demeanour changed, and I was fobbed off to the GP surgery next door to see a GP who had already refused to send me for a CT scan a few days before due to ‘radiation risks’. It took me around 6 months to get to the stage where I felt bad enough to take myself to A&E, where I had been given countless medications that did absolutely nothing. In my opinion, if a patient is complaining of persistent headaches that do not respond to medication, at 3 months a GP should be legally required to send them for a subsequent CT or MRI scan. It is unfortunate that some patients are diagnosed too late into their illness, and had they been diagnosed much earlier they would have better statistics behind them. To eradicate this, GPs should not only be more aware of the symptoms of brain tumours but should understand, at least on a basic level, how dangerous and aggressive brain tumours can be in the young adult population and should, therefore, be referring patients for a scan that could potentially save their life.
2) Education
While rare, brain tumours are one of the worst killers in the game, yet not enough people are educated on the symptoms pre-diagnosis, as well as there being a limited knowledge on how to help someone once they have been diagnosed and how treatments such as surgery, radiotherapy, and chemotherapy can affect us. Basic training and education within GP surgeries should be mandatory, with organisations such as HeadSmart offering print out documents of what symptoms to look out for in young adults and adolescents. These documents and posters should absolutely be littering the walls of your local GP surgery. If they are not you can always get in touch to make them aware that they should be stocking these posters to raise awareness for their patients, and for their GPs to be more understanding when a young adult comes in for the 7th time complaining that their headaches are still. Not. Going. Away. This education should also be extended to A&E and hospital staff coming across patients pre-diagnosis. I’ve heard stories of nurses being caught calling patients ‘hypochondriacs’ behind their backs, doctors shaming patients for the size of their records at ‘such a young age’, patients being turned away with a ‘virus’ diagnosis and no further help. Perhaps some education in empathy could benefit some of those in our NHS service, belittling a patient is not going to help us, neither is it going to aid us in improving the speed of diagnosis rates. It is attitudes like those listed above that end up ruining the work put in by charities and ambassadors, and make it harder for our voices to be heard.
While only writing about two current ideas to begin improving the diagnosis times for a brain tumour, these are still big steps in our journey to find a cure. Earlier diagnosis will allow for earlier treatment, specifically less invasive treatments rather than the heavier treatments that can leave patients feeling worse off than when they began, with brain surgery obviously having a number of complications that in the worst cases have left people paralysed or suffering from a stroke. While major complications are rare, as our neurosurgeons are the upmost professionals and are incredibly talented in the work they do, the smaller complications such as memory loss, mobility issues, changes in appetite, and fatigue more often that not cannot be avoided at all. Brain tumours, while a physical cluster of abnormal cells, heavily affect your mental health, and the inclusion of better mental health services for young adults is crucial in survival rates. The mental health system in the NHS is already incredibly underfunded, which desperately needs to be addressed, and this doesn’t always bode well for brain tumour patients. Recent psychological studies have shown that a positive attitude regarding your situation and diagnosis can actually improve survival rates, with recent stories such as John Newman’s recurrence highlighting that his positive attitude could be what kept his brain tumour coming back quicker. Obviously mental attitudes are not the cure to a brain tumour, and physical treatments are necessary, but it should not be underestimated in the effect a positive mind set can have.
If you find yourself sitting bored for 15 minutes, look into organisations such as HeadSmart, look over their downloadable documents and raise awareness for the charities and what you can do to help. Support local charities and any volunteer work in your area, print off checklists you can give in to your local GP surgery to make them aware of areas they can improve in. Offer your shoulder to someone going through a tough time in their diagnosis, even if they don’t always pick you up on the offer, knowing who I can definitely turn to makes me feel so much more comfortable when I feel a bit low. In order to improve diagnosis rates and survival rates for patients, we need the help of our friends and family as there are not enough of us being listened to; your ongoing support, whether it be sharing a blog post, donating to charity, or even just looking up what symptoms you should be aware of help us in our journey and mission to find a cure for brain tumours, once and for all.
This week however, I’ve had some interesting conversations with members of The Brain Tumour Charity Young Adults group on Facebook about the constant misdiagnosis of brain tumours, and wanted to focus on changes in GP surgeries and the overall NHS that I would like to see. Brain tumours are an incredibly complex type of cancer, with only tenuous links and ideas about what causes them other than your cell mutation going awry, or even being affected by background radiation from the Big Bang all those years ago. While medicine has come a long way and new clinical trials are being reported on, GPs appear to be overlooking the symptoms of brain tumours for months on end, with some patients waiting YEARS to be diagnosed. In my journey to raise awareness for the neglect brain tumour patients are accustomed to pre-diagnosis, I’ve even written to Downing Street and have been in contact with the Department of Health and Social Care to speak about what changes I think should be necessary in improving diagnosis rates and survival rates.
1) A 3 Month Maximum
On average, a GP may only ever come across 1 or 2 patients with a brain tumour diagnosis, so from the beginning it is easy to see why our symptoms are being ignored for extended time periods. One of the most common symptoms of brain tumours are headaches, which seem to be a symptom that is looked down upon in any diagnosis, as if it is normal to have a headache with every single ailment in your life. I remember entering A&E in Ipswich in tears over my headaches, but the second I mentioned it was a headache that brought me through the doors the nurse’s demeanour changed, and I was fobbed off to the GP surgery next door to see a GP who had already refused to send me for a CT scan a few days before due to ‘radiation risks’. It took me around 6 months to get to the stage where I felt bad enough to take myself to A&E, where I had been given countless medications that did absolutely nothing. In my opinion, if a patient is complaining of persistent headaches that do not respond to medication, at 3 months a GP should be legally required to send them for a subsequent CT or MRI scan. It is unfortunate that some patients are diagnosed too late into their illness, and had they been diagnosed much earlier they would have better statistics behind them. To eradicate this, GPs should not only be more aware of the symptoms of brain tumours but should understand, at least on a basic level, how dangerous and aggressive brain tumours can be in the young adult population and should, therefore, be referring patients for a scan that could potentially save their life.
2) Education
While rare, brain tumours are one of the worst killers in the game, yet not enough people are educated on the symptoms pre-diagnosis, as well as there being a limited knowledge on how to help someone once they have been diagnosed and how treatments such as surgery, radiotherapy, and chemotherapy can affect us. Basic training and education within GP surgeries should be mandatory, with organisations such as HeadSmart offering print out documents of what symptoms to look out for in young adults and adolescents. These documents and posters should absolutely be littering the walls of your local GP surgery. If they are not you can always get in touch to make them aware that they should be stocking these posters to raise awareness for their patients, and for their GPs to be more understanding when a young adult comes in for the 7th time complaining that their headaches are still. Not. Going. Away. This education should also be extended to A&E and hospital staff coming across patients pre-diagnosis. I’ve heard stories of nurses being caught calling patients ‘hypochondriacs’ behind their backs, doctors shaming patients for the size of their records at ‘such a young age’, patients being turned away with a ‘virus’ diagnosis and no further help. Perhaps some education in empathy could benefit some of those in our NHS service, belittling a patient is not going to help us, neither is it going to aid us in improving the speed of diagnosis rates. It is attitudes like those listed above that end up ruining the work put in by charities and ambassadors, and make it harder for our voices to be heard.
While only writing about two current ideas to begin improving the diagnosis times for a brain tumour, these are still big steps in our journey to find a cure. Earlier diagnosis will allow for earlier treatment, specifically less invasive treatments rather than the heavier treatments that can leave patients feeling worse off than when they began, with brain surgery obviously having a number of complications that in the worst cases have left people paralysed or suffering from a stroke. While major complications are rare, as our neurosurgeons are the upmost professionals and are incredibly talented in the work they do, the smaller complications such as memory loss, mobility issues, changes in appetite, and fatigue more often that not cannot be avoided at all. Brain tumours, while a physical cluster of abnormal cells, heavily affect your mental health, and the inclusion of better mental health services for young adults is crucial in survival rates. The mental health system in the NHS is already incredibly underfunded, which desperately needs to be addressed, and this doesn’t always bode well for brain tumour patients. Recent psychological studies have shown that a positive attitude regarding your situation and diagnosis can actually improve survival rates, with recent stories such as John Newman’s recurrence highlighting that his positive attitude could be what kept his brain tumour coming back quicker. Obviously mental attitudes are not the cure to a brain tumour, and physical treatments are necessary, but it should not be underestimated in the effect a positive mind set can have.
If you find yourself sitting bored for 15 minutes, look into organisations such as HeadSmart, look over their downloadable documents and raise awareness for the charities and what you can do to help. Support local charities and any volunteer work in your area, print off checklists you can give in to your local GP surgery to make them aware of areas they can improve in. Offer your shoulder to someone going through a tough time in their diagnosis, even if they don’t always pick you up on the offer, knowing who I can definitely turn to makes me feel so much more comfortable when I feel a bit low. In order to improve diagnosis rates and survival rates for patients, we need the help of our friends and family as there are not enough of us being listened to; your ongoing support, whether it be sharing a blog post, donating to charity, or even just looking up what symptoms you should be aware of help us in our journey and mission to find a cure for brain tumours, once and for all.
Comments
Post a Comment