Thank you xx
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Same ⌠a stubborn husband too 
xx
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My husband was stubborn as well and refused to go to hospital when clearly he had had a heart attack twice. He left it too late. But then when he did go his diabetes was getting worse . He had no treatment in the pandemic so it is not surprising things were worse. He was a very complex character. His own mother behaved the same left it too late and I think could have been saved had she been in hospital earlier. She had this wait and see attitude.
Believed what she wanted to believe. Yet my father kept telling the GP he wasnât getting better and was ignored. Misdiagnosed and I think if he had been taken seriously could have had proper treatment instead of being dead a week after being in hospital.
So my experience of all my family is of bungling. I havenât mentioned every instance. Seems to me some people get all the help and others donât. Seems to be a lottery.
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@Enorac I agree itâs luck of the draw
There is also the post code lottery of different NHS trusts
My partner needed a drug called bevacizumab for liver mets, which isnât approved for use in colon cancer on NHS, despite being a world wide standard treatment (whole other issue on its own) so has to be used off label and paid for privately
Some NHS trusts subsidize the generic drug with cost being between ÂŁ300 - ÂŁ400 per month, the Lancashire trust doesnât, so cost is ÂŁ4,000 - ÂŁ5,000 per month for treatment
Difference between life and death
I had to source the drug privately to get the generic so it was affordable
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Memories of us
Did it work when you got the drug?
@Enorac no it was too late 
the drug cuts the blood supply to the tumours so idea was to try reduce the tumour burden in her liver so the specialized treatment I originally took her to India for, would become viable, but its used in conjunction with chemo.
She had deteriorated to point that her blood work precluded chemo, so she only ended up having two doses of the bevacizumab
If it had been offered earlier, it might have reduced the tumour burden or slowed down the growth - will never know
The drug wasnât even mentioned in the UK, it was only when I took her to India that the oncologist there included it in her chemo regimen
He was quite surprised, even shocked, that it wasnt included as part of her treatment
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Excuse me if im cynical but doesnt suprise me ⌠as i said before, third world care ⌠;(
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@Deb5 I wish Iâd taken her earlier, things may have worked out differently
Wisdom of hindsight again
I was researching treatments and foreign hospitals and consulted with doctors in Turkey, Poland and India
India wasnât my first choice - you have this idea itâs third world and treatment in Europe would have been better
The cost in India was nearly half of anywhere else, but it was the consult that made up my mind.
When I consulted with the Turkish and Polish doctors, they struggled with English and couldnât really explain the treatment
The Indian doctor was very well spoken, and she went through each step of the treatment and how it works
Itâs another world in India - absolute chaos - but somehow they just get things done. She had multiple scans, genome sequencing biopsy, chemo, ecg, op to have chemoport inserted and chemo treatment in 3 weeks
It would take 6 months to get that done in UK if youâre lucky
Another thing that pisses me off in UK and nhs is they refuse to give you medical results
I went to pals a number of times just to get copies of blood results and scan reports
To get the actual dicom scan images - which I needed to send to the overseas hospitals so they could analyse for a treatment plan - has to be a formal application and took just over a month
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Yeh we had to complain to PALS quite a few times too ! Its ridiculous ! They dont tell you anything ! Such bad care over here ⌠its crap âŚwhere theres a will theres a way hey ! But there is no will in our hospitals if you ask me ! They just let everything slide ⌠drives you flipping crazy âŚif they spotted my husbands bladder cancer a few months earlier it might have been a different outcome too ⌠we will never know will we ??? Thatâs what makes it hard to accept isnt it ? Because youre not convinced they did everything they could ! Xx
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I canât understand why they have a policy where they wonât give you results - itâs your blood work and scans
But they just wonât, until you complain. And things like blood work, itâs weekly thing so you can see if itâs going worse or better when they change meds
I eventually managed to cosy up to a nurse who would show me the results covertly every week on the screen and I had to write it down
No one can tell me the reason why itâs policy you canât get a print out
Even pals when complain, first thing they say is why do you want them - like itâs this outrageous request
And yet, after her chemo sessions, they gave her copies of the pre chemo blood work when hadnât even asked- makes no sense
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The whole system is ridiculous ! They should scrap it all and start again !! Thats why i domt care if it was privatised , then they might be more efficient ??
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I agree - social systems just always end up bloated and inefficient
Would just be such a monumental undertaking to try privatise it - would have to roll it out to individual trusts
And if it goes fully private, is the government going to reduce taxes and national insurance that we pay to cover what we would have to pay for private health insurance - not proportionally and weâll end up out of pocket
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I hope they donât go the American way. It is ok if you have the money ,but what if you are on long term care or just do not have the money.
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Yes they would have to do it proportionately, i know in australia they do it on a sliding scale according to income ⌠why not do it like that ? Funnily enough a lot of nurses snd probably drs go to australia cos they can earn more money !! Ironic that isnt it ? Xx
I thought this page was to help each other, look out for one another and help each others anguish. This chat is awful. Full of politics and putting down the NHS, the doctors and nurses that work so hard. I understand everybody on this site has lost somebody close to them and are hurt, angry and looking for blame but this discussion certainly wouldnât help me with my grief. You are making me worse. Iâll go elsewhere.
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Itâs General grief discussion
No one is blaming nurses and doctors - for most part theyâre doing best they can with tools theyâve been given by NHS - thereâs no denying NHS has deteriorated dramatically - when youâre dealing with dread diseases, its difference between life and death
If I have to go to a third world country to get superior health care, particularly for cancer, itâs a damning indictment.
Christieâs was considered the cutting edge of cancer research and treatment in the world not so long ago
If one person reads this thread and are motivated to head overseas for cancer treatment not available in UK, or get a second opinion, and it saves a life or at least prolongs a life for a few years, then itâs worth its weight in gold
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Totally agree with you.
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I agree also. In Spain they combine their National health with the private section. But I must say they doctors tried all they could with my son. It was just too quick once it went to the bones. They tried to get him moved to the royal free hospital ,which has a cancer care unit . But I think they have only a small amount of beds there ,and he died before he could be moved. There is a lot more information that could be given to the public, like I have found out the government are concerned why so many people with learning disabilities and Autism are dying young . So they have set up a site on LeDeR, where anyone can report a death of a person with these disability . It can be found on the internet but I have not seen anything about it in the papers or on the news. The research is by kings hospital,I have done it for my son they need an hearing.
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Behind the discontent with NHS and NHS bashing, which isnât without justification, there is an overarching point
Donât blindly accept what youâre being told, especially if it doesnât feel right
Do your own research, itâs much easier these days with chatgpt and Google bing to feed in a series of symptoms, reports or blood work and get a concise summary of potential ailments. This gives you talking points to interrogate your doctor on his diagnosis and possible alternate diagnosis
If you arenât satisfied or even as a followup, get a second opinion and treatment options from overseas sources that are completely independent - this is where access to blood and scan results comes in. The consults I had with overseas hospitals ended up costing me total of ÂŁ50
I wish someone had said to me, 3 or 4 months before I figured it out myself, get a second opinion from a completely independent overseas source and see what they say.
It may have made all the difference and my partner may still have been here today
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@MemoriesOfUs been following this discussion lately and it has thrown up some very interesting points. Still I have no clear answers but I did find this debate very interesting, kind of sums up all the positions:
Radio 4 Moral Maze: Future of the NHS
It is from 2022 but still very much relevant