jackolantern
VIP Member
A lot of the time though private will only press ahead with information they want from your NHS doctors. It’s a stupid system and you can’t win.
Cancer Influencers #6
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A lot of the time though private will only press ahead with information they want from your NHS doctors. It’s a stupid system and you can’t win.
Glitteryflipflops
Well-known member
Yes, Bowelbabe threw a hell of a lot of money at her cancer, it would have been hundreds of thousands of pounds. That sort of care just isn't available unless you are paying a lot of money for it. It is a shame she wasn't more open about it, she talked about her care as if it was completely normal. but then maybe she thought she would be attacked for her privilege if she wasnopen about it?
jackolantern
VIP Member
She maybe was just so used to a privileged life it was normal to her and didn’t think about the fact it was different for others
It's still such a postcode lottery when it comes to care of any kind within the NHS....I live in a v rural part of the country with only 1 district general hospital serving the population and a limited number of specialist services ( eg there are only 4 oncologist for entire hospital and they each have their own area of interest- breast/bowel/ gynae etc...and certainly no liver or upper GI surgery
if I wanted a 2nd opinion I'd have to travel over 70 miles into another country, so may not be entitled to the same types of treatment
There are centres of excellence that patients can be referred to for specific specialist treatment, but it's not a given that you will nec be referred there in the first place and the MDT would need to agree on a referral
if I wanted a 2nd opinion I'd have to travel over 70 miles into another country, so may not be entitled to the same types of treatment
There are centres of excellence that patients can be referred to for specific specialist treatment, but it's not a given that you will nec be referred there in the first place and the MDT would need to agree on a referral
jackolantern
VIP Member
I'm in Wales ....its appalling the lack of services we have here ...in fact 3 clinical oncologists resigned recently from the neighbouring hospital where patients from the entire county go for radiotherapy (40 miles away) ....this will means months of backlogs for treatment and no word of when they are likely to be replaced- which given the dire shortage of clinical oncologists in U.K. it's likely to be a very long timeOh absolutely. I live in Cumbria and I'm convinced it's the dead zone of the entire UK
in meantime patients are being referred to Clatterbridge and the Christie for some radiotherapy treatment ( at least a 4 hr round trip for most people)
BettyCrockerr
VIP Member
Oncologists aren’t required for radiotherapy to go ahead. As long as there are radiologists there patients can still have treatment as long as it’s already been prescribed/planned.
Gingercream
VIP Member
The NHS has no forward planning at all. So many doctors and nurses are retiring and leaving gaps in service as there’s no one replacing them. It’s becoming a 2 tier system with private if you can afford it and a skeleton service if you can’t 
bleeping tories!!
bleeping tories!!
Olgivy
VIP Member
And they have been talking about needing more nurses and midwives etc for at least 20 years! I trained in a discipline in 2006. Back then it was all “shortages” and “striking” and ridiculous “nurse: patient ratio”. “Staff sickness through the roof”. Nothing has changed. I left the NHS, a few years ago and I am very happy to no longer work in such a toxic culture. So many of my colleages had anxiety, digestion issues, insomnia, and/or some form of work related ptsd. Effective care can’t be provided when these are only SOME of the issues going on culturally in the NHS.
Even under labour the nhs was bleeping shite.The NHS has no forward planning at all. So many doctors and nurses are retiring and leaving gaps in service as there’s no one replacing them. It’s becoming a 2 tier system with private if you can afford it and a skeleton service if you can’t
jackolantern
VIP Member
The NHS has been fucked for decades. It’s just worse now.
But it's not been planned, that's the issue! ( and there's also a dire nationwide shortage of radiologists)
Megasmon92
Active member
I feel for bowelbro i really do I think the way he has been treated is appauling. I sometimes think one of the problems is (im not referring to the system here but sometimes the patient) we often think "well if they remove my lung, sort my liver then I can get HIPEC" but it isnt as simple as that and JM even told him that sometimes surgery can cause the cancer to go wild, wether he paid privately or NHS i don't think anyone would operate on him IF the cancer is in his lungs and liver. He really needs a PET scan. It doesn't mean he is a write off....his oncologist (if he wasn't such a awful man) should be discussing clinical trials etc with him (if/when they finally decide wether it is cancer or not) there should be more options.
We compare BB and how much she spent on her treatment ...I don't mean to sound awful but it only bought her time...precious time but some people who don't have private insurance are able to live for a long time with stage 4 cancer.
It is a messed up world.
We compare BB and how much she spent on her treatment ...I don't mean to sound awful but it only bought her time...precious time but some people who don't have private insurance are able to live for a long time with stage 4 cancer.
It is a messed up world.
jackolantern
VIP Member
I definitely don’t think either he or anyone here thinks it’s just a case of chop those bits out and jobs a good un, I think it’s just the hope that HIPEC could give him even a 1% chance of life versus 0. Can’t blame him for wanting to try even with those odds.
Plus “it only bought her time” time is all we have, we are all dying. BB got a lot more time and did a lot with it. Money may not be certain to change the outcome but it gives a chance and that’s everything when we only have one life. Plus it reduces suffering vastly. Look at BBs death versus Moniques.
DoctorFlocci
Well-known member
Monique had her HIPEC surgery (& the staging laparoscopy prior to the main op) done privately at The Princess Grace Hospital.
It took her over 3 months to recover from that surgery (not unusual for HIPEC at all but Monique did seem to have a particularly torrid recovery) and by month 4 post-HIPEC, the cancer was back.
Following that, Monique asked for donations to her GFM & over £80K was donated.
It’s so easy for me to sit here - uninvolved clinically & emotionally (though I’ve worried a lot about Monique and what she was put through) - and say “Was it worth it? Does money really help?” but still, I have concerns about her treatment.
NB It’s also none of my business, I know.
Someone, on a US-orientated medical forum once posted that “The very poor & the very rich both get very bad medical care. The poor because they can’t afford anything & the rich because they get everything they ask for.”
I just hope BowelBro is able to find someone he can work with & trust. It’s not meant to be adversarial; he may not hear what he hopes/ wishes to hear but he needs to have trust in the person saying it, whether he paid for their time or the NHS did.
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jackolantern
VIP Member
I was referring to BBs end of life care. Monique was writhing in agony in an NHS ward. Deborah was able to die at home surrounded by her loved ones due to community nurses. A lot of this will be because her pain was better managed leading up to this point due to her private care so she wasn’t in such a bad way. She also was better able to afford home comforts no doubt and her home better suited. I agree Moniques surgery was fruitless, but I wasn’t talking about that. Nor does it mean Bowel Bro doesn’t deserve the chance if he wants to take it.
Megasmon92
Active member
Fair point, completely understand what your saying. I was trying to say that people like Monique lived just as long as BB did with a stage 4 diagnosis. Maybe I worded it badly.
BettyCrockerr
VIP Member
Define “living” though? Monique may have been alive but she was existing. She had no quality of life at all for the last 2 years of her life - she was laid up in a hospital bed in excruciating pain, her organs failing her, infection upon infection, unable to eat or drink properly, shower or get dressed and on occasionally being strong enough to even go outside. That’s not living.
DoctorFlocci
Well-known member
Deborah’s home care was provided - free of charge - by the Sam Beare Hospice team. They also cared for my father whilst he was dying (pseudomyxoma peritonei), initially at home & later in the hospice (he didn’t want to die at home), also free of charge.
As an aside, prior to the above, my father underwent major abdo & pelvic surgery at Basingstoke with a view to HIPEC (or the modified Sugarbaker cytoreductive technique as it was then known) but when they got in, they realised they could not help, the situation was too advanced and so (after clearing several litres of jelly out of his abdomen) they closed him up. It still took 10 days in ICU & a further 9 weeks in hospital for him to be well enough for discharge. He still developed a PE a week later and had to go back - this time to our local trust - where, once again, the NHS pulled out all the stops to save a terminally ill man in his late 50s.
I’m glad Basingstoke have used his case (& others like it) to refine their guidelines as to who they can genuinely offer help to and those who would not be able to benefit. This type of surgery should not be offered lightly, the bar should be set carefully. People often talk about major surgery but when you’ve opened someone from xiphisternum to pubis, even just for a few hours, there are ramifications & complications that will come from every angle, the term “major surgery” isn’t sufficient to describe it. The term “informed consent” is often used in medicine, I’m not sure it can ever apply to HIPEC, even if you spend hours with patients I’m not sure they can ever really grasp what they’re agreeing to.
I did see patients who did well following the surgery at Basingstoke. It wouldn't beperformed if that wasn’t the case. I just think that the criteria for acceptance need to be very strict.
I don’t understand why some of the money donated to Monique couldn’t have been put to use to provide her with some comfort but it seems probable to me that she never fully accepted that she was dying (& her parents both seemed convinced she would somehow recover) and hence insisted on remaining in an acute trust.
I passionately believe that everyone deserves a good death. People think I’m mad to say that but I know it’s possible. It doesn’t mean I’ve given up or that I didn’t fight hard enough or that I’ve lost the battle. It’s just a simple acknowledgment of the inevitable and my determination to leave peacefully.
I’ve mentioned this before (many threads ago) but there’s a good insight here during this interview with Professor Sir David Spiegelhalter, relevant section 19.20 - 24.58.
TW: deals with diagnosis of cancer in a baby & eventual death of a small child.
Desert Island Discs - Professor Sir David Spiegelhalter, statistician - BBC Sounds
Professor Sir David Spiegelhalter shares the soundtrack of his life with Lauren Laverne.
www.bbc.co.uk
If I had one wish for people with cancer - or any other life-limiting illness - it would be that they have someone to talk to. I don’t necessarily mean a family member or friend (though their support is vital), it’s often “easier” to reveal and talk through your worst thoughts and fears with a stranger. I understand that for some, acceptance means giving in but it need not.
Sorry for the waffle
.
jackolantern
VIP Member
Deborah’s home care was provided - free of charge - by the Sam Beare Hospice team. They also cared for my father whilst he was dying (pseudomyxoma peritonei), initially at home & later in the hospice (he didn’t want to die at home), also free of charge.
As an aside, prior to the above, my father underwent major abdo & pelvic surgery at Basingstoke with a view to HIPEC (or the modified Sugarbaker cytoreductive technique as it was then known) but when they got in, they realised they could not help, the situation was too advanced and so (after clearing several litres of jelly out of his abdomen) they closed him up. It still took 10 days in ICU & a further 9 weeks in hospital for him to be well enough for discharge. He still developed a PE a week later and had to go back - this time to our local trust - where, once again, the NHS pulled out all the stops to save a terminally ill man in his late 50s.
I’m glad Basingstoke have used his case (& others like it) to refine their guidelines as to who they can genuinely offer help to and those who would not be able to benefit. This type of surgery should not be offered lightly, the bar should be set carefully. People often talk about major surgery but when you’ve opened someone from xiphisternum to pubis, even just for a few hours, there are ramifications & complications that will come from every angle, the term “major surgery” isn’t sufficient to describe it. The term “informed consent” is often used in medicine, I’m not sure it can ever apply to HIPEC, even if you spend hours with patients I’m not sure they can ever really grasp what they’re agreeing to.
I did see patients who did well following the surgery at Basingstoke. It wouldn't beperformed if that wasn’t the case. I just think that the criteria for acceptance need to be very strict.
I don’t understand why some of the money donated to Monique couldn’t have been put to use to provide her with some comfort but it seems probable to me that she never fully accepted that she was dying (& her parents both seemed convinced she would somehow recover) and hence insisted on remaining in an acute trust.
I passionately believe that everyone deserves a good death. People think I’m mad to say that but I know it’s possible. It doesn’t mean I’ve given up or that I didn’t fight hard enough or that I’ve lost the battle. It’s just a simple acknowledgment of the inevitable and my determination to leave peacefully.
I’ve mentioned this before (many threads ago) but there’s a good insight here during this interview with Professor Sir David Spiegelhalter, relevant section 19.20 - 24.58.
TW: deals with diagnosis of cancer in a baby & eventual death of a small child.
Desert Island Discs - Professor Sir David Spiegelhalter, statistician - BBC Sounds
Professor Sir David Spiegelhalter shares the soundtrack of his life with Lauren Laverne.
If I had one wish for people with cancer - or any other life-limiting illness - it would be that they have someone to talk to. I don’t necessarily mean a family member or friend (though their support is vital), it’s often “easier” to reveal and talk through your worst thoughts and fears with a stranger. I understand that for some, acceptance means giving in but it need not.
Sorry for the waffle
Im not talking about her home care team, I specifically worded it that way because I knew someone would bring up that it was free. I was talking about how being less in pain due to her private care meant she was able to even have home care, that plus more money to modify her living environments. Monique was so ill she couldn’t even leave her bed nevermind go home.
Look, this isn’t a competition about how Deborah actually was equal to us all. Yeah she had some NHS stuff, yeah she paid for some stuff herself, yeah she had some insurance.
Point is, no one should be written off because of their stage/lack of wealth. If Rich wants this surgery and has found people able and willing, he should be entitled to that without people saying there’s no value due to how advanced he is. Even if he was 1% chance of survival that’s more than the certain death he faces otherwise.
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