to think 90000 is a small price to pay to increase people with cancer lifes

[suziepra]

I can't believe the NHS know a drug is effective but refuse to pay it! I don't care how much it costs, print the money and let people live for as long as possible!

In the US, too, it is more than likely your insurance will not cover this drug because it is experimental.

My child was nine at the time of her death from cancer. She wanted to grow up, marry and have children.

She was treated with drugs decades old that killed her. Next to no research has been done into the paediatric form of cancer she had.

What a blow that was.

For all us parents. So many children we knew have died, treated with decades old drugs or with only palliative chemo because there is no treatment for the type of cancer they had (DIPG).

Maybe someone should start a spill the beans thread on how the NHS could save money.

on second thoughts there must be some on more 'private' sites

Pharmagras I do agree with you about cure is hard to define. I know a couple of people whose cancer is being 'managed' and apparently that could go on for years in certain cases. Sorry for everyone that is affected by these decisions.

I agree with the comments above - it is a scam by big Pharma who are exploiting hope. The next generation seem not to be so scared of dying but more concerned with the manner of their dying. A couple of years ago after a three year wait I got 8 sessions with a psychotherapist. When I asked about the needs of those young men suffering from PTSD after combat in the middle east (a recent suicide of a young father had been in the news) I was looked at blankly and told - there is just a waiting list! We know from the excellent 24 hours in A&E how triage is at the centre of their modus operandi - perhaps it ought to be more thought through in other areas too?

Beccajoh sorry for the x post, I'm so very sorry to hear about your situation.

You know, Clarinet9, I've thought that too.

But fundamentally much as I adore the NHS as an organisation it needs to sharpen up. Yet sadly there's an outcry at NHS managers's salaries if they go much above the national average. Given the decisions they're making and the budgets they handle, the NHS shouldn't be paying £40-£50k. They need to recruit really sharp shit-hot managers from the private sector and pay them the commercial rate, which may well be 10 times the current NHS salary.

It's a huge disconnect in my opinion when the likes of the Daily Fail bleat on about NHS spending money in management "instead of saving lives."

I think they should provide 2 ivf across the country not a postcode lottery this would give under 35s about 80% chance.
But i guess i think they should lower the age limit.
As they are paying for 5% chance of success in some age groups.
(Of course though it takes years to get to treatment)
Infertility truly can cause the depression that people complaining to get boob jobs take the piss in claiming.

I do think this is more important than 1/5 people getting 6 months extra. 90k vs 12k
Some infertility is genetic.
Some made worse by obesity, smoking.
But some really just unlucky.
On the ivf journey they can find things like pcos and thyroid issues which would have affected your health.

If i didnt have DD by icsi we would have no kids, no grandkids probably costing more than the 6k to have her in care for me and dh when we are older.
And having had her and bf her i probably have a reduced chance of getting breast cancer.
We could avoid a lot of this unnecessary treatment (ivf) by trying to conceive under 30 yrs old.
Also by identifying people with say pcos 7% of women or so when they are younger, they may not get so overweight, start trying earlier, treatment would be more effective so less escalation to iui and ivf needed.
average women probably cost more than an ivf patient due to having several pregnancies and births, education, healthcare for kids. I imaging the average kids for ivf patients is 1 (raised by the number of twins)
So overall even with 6k ivf im still pretty cheap. And then there will be the ones who are unsuccessful so cost even less.

I think i would rather they brought back cervical screening at 21 as that can save lives along with the jab.

Some of these cancer treatments are just so expensive, hopefully cancer research will find a cure.

I've seen and worked under those managers pharmagrass, my observation is that pretty much every manager in the nhs at the moment was part of the drive to implement modern matrons. If memory serves correctly, because we needed clincians in control who would really understand patient needs.

Problem is the roles have changed from that into something much more business focused yet the people haven't. It takes a certain skill set and personality to focus on finances and management that just wasn't needed at the time they were recruited into their role. The amount of dross I heard spouted and plain old fear in the eyes of people who didn't really know what they were doing was far too common. Biggest problem was (imo) them accepting whatever they were told (illustrated by your price negotiation example), instead of having an eye and stomach for innovation and risk taking.

CCG's will go the same way. I'm not so involved now, but till a couple of months ago I was involved enough to see the cack handedness going on. Piss up in a brewery comes to mind. Two years I saw them achieve precisely fuck all - not even a coherent action plan.

I'm by no means an expert, but I've worked across public, private and charity sectors - if even I can spot cracks then there's something quite badly wrong.

But I've digressed slightly. I think drug and supplies should be done by one department in nhs England personally rather than individual trusts.

It would level off the playing field with regards to the postcode lottery business and mean higher wages could be invested in proper talent and experience.

Would also get rid of those stupid signs in our local hospital telling reps to piss off unless they've got an appointment

Not that it stops them mind, I think they've got maps to the secretaries offices. If there's one thing I miss about the private sector it's being able to be rude to pushy reps.....

"But I've digressed slightly. I think drug and supplies should be done by one department in nhs England personally rather than individual trusts. "

Some of it is, via PASA. And to be fair the PASA guys I saw were very sharp and fully procurement trained.

There's a pull though, between trusts being pushed to be financially independent and self accountable vs centralisation of anything, including purchasing.

And pushy reps? They're just doing their jobs, paying their mortgages. We've all got mothers ;-)

Ha! I miss the game - it's no fun been a gatekeeper if you can't be buttered up..... Tbf most of the reps we met were lovely, but there were a couple of slime balls I just cringed at.

I didn't know about the PASA, purchasing anything in the nhs is a joke and I would love to spend some time in the purchasing department to see the reasons behind why it is the way it is. Granted

Posted to soon!

Granted I'm coming from a very office based angle, but surely national buying power would yield better deals than lots of trusts... I worked in a trust that managed to get a stonking deal on (non branded) post it notes - only a fiver for 3 pads (and we had to have those or nothing).

Actually, maybe that's were companies like Roche redeem themselves, promotional stationery is saving the nhs from itself.

To be honest when there's children who can't have operations to walk I think we need to get our priorities right. I accept a 90 year old person may not want to let go of life, but there's just too little money and we need to weigh it up.

Ha! PostIt notes are like NHS admin crystal meth!

Beccajoh No-one thinks you are "not worthy" of another 6 months with your children. It is not a judgement of you personally, or any other sufferer from a terminal illness who is refused funding.

I am really truly sorry for your situation and completely understand your despair - but with finite funds (and there will never be enough funding to treat everyone with everything developed) what can be done?

It is a tragedy and my heart goes out to you and your family.

Beccajoh - I am so sorry for your situation.

Please bear in mind that the cancer drugs fund is there to help people like you, so all is not lost even if funding is refused. Your onco should know the procedure and I know OH has made a few successful applications on behalf of his patients.

Without commenting on specific cases such as Beccajoh, my firm occasionally made products available FOC under a "service to medicine" clause. What this meant in real terms was that if an oncologist could demonstrate that the patient was likely to benefit substantially, but that their disease state fell outside the current license indications, we could supply the drug free of charge on a named patient basis so long as the prescriber agreed to write up their experience of using it in that particular patient profile.

Whilst I'm on about 'named patient basis' this is how at least one manufacturer is able to sleep their hugely expensive monoclonal antibody - they essentially push the prescribers to carefully select the patients most likely to respond (rather than clinical need) and supply the first three months' drug for free, and only then charge for patients who do well on it. (12 weeks is a reasonable response time for most drugs.)

The lesson here for patients? Learn about your disease, see what new novel therapies are coming through, if you can, speak to the manufacturer, and pester your prescriber to speak to them to and at least look at the data. Then if he/she thinks you'll benefit you can put together a case for exceptional funding. Don't assume that your prescriber will know the process - find it out yourself - names and phone numbers, and call them to get a handle on how it really works and push push push. (Be like a rep, really!) You have to become your own advocate.

Spero has posted very wisely on this thread. Most of theses drugs will marginally prolong life at great cost in terms of suffering. If a magic bullet were found, it would be funded. Until that point, NICE has to weigh the benefits of one drug against its costs. The budget is finite and funding one treatment means not funding something else. These drugs are blockbusters for 'big pharma' who have no problems spending hundreds of millions on PR.

You need to read the research papers and, even then, if they are drug company funded, you need to be v careful. My mother who just died of a rare cancer was offered the latest expensive chemo, for which she was fully insured. The oncologist quoted her a 30%chance of 2-3 months extra life, at the cost of being much sicker. She wisely declined.

God it's shit isn't it Pharma? We're a relatively educated, articulate bunch on MN. Even so, that process would be daunting for anyone, let alone if they were feeling unwell and racked with worry about their prognosis. For those who are less articulate or educated it would be near impossible to get the best possible care.

The whole thing is so fucking corrupt!

Nevertheless, I hope your suggestions help a few people.

Funlovin are you aware that most plastic surgery that is carried out in this country on the NHS is not cosmetic surgery? There is a huge difference. For example burns victims will have plastic surgery when they have an essential skin graft - would you deny them that? Or do you really mean to refer to cosmetic surgery when you say ban it all?

Plenty yes it is shit.

I firmly believe that when someone is diagnosed with cancer (or anything else for that matter) instead of offering platitudes about "if there's anything I can do" etc, a REALLY helpful thing is to research research research. It can appear daunting but there are often clear pathways that appear, and new information coming through all the time.

I think there was a target of getting over 50% of newly diagnosed patients onto a clinical trial and to the layman, it's easy to "not want to be experimented on."
The reality is very different - it's often the fastest way to get to newer drugs which can be shown to be likely to be very good but just not licensed in this country yet. Or even if you don't get to try a new drug, overall patients on clinical trials do better anyway - perhaps because the appointments are longer, more questions are asked, the patients are monitored more closely so have less complications etc.

Cancer is a shit shit shit disease group. I'm very sorry for those who have gone through this. And I hope my dubious tips help someone!

Isn't it something like 1 in 4 people get cancer? Terrifying odds. But also financially horrendous for the extra months :(

Of course you,we,i care how much pharmaceuticals cost. Cost is v relevant
Nhs Cost is compulsorily taken via tax and ni it needs to be prudently managed
Its simplistic to say fund everything,its only money.there needs to be clinical efficacy, value for money

This is exactly why it's time to privatize the NHS.

you can make an additional voluntary financial contribution to local oncology unit
If you feel so motivated,they'll be too happy to accept