Invited to Westminster re Co payment

Hi to all
I have had an invite to Westminster its an Open Forum being conducted by Prof Mike Richards and chaired by Harpel Kumar Chief exec of Cancer Research U.K. Apparently Prof Richards will be saying a few words, erm well this is where you come in if I get a chance to speak I dont want to waste the moment so please let me know what you would say if you were there. I know the points I want to make but I really want to represent our special club.(the one we dont want to be in) We all have such varying opinions re co -payment this is or rather maybe my moment so I need to use it wisely.

Love Debsxxx

Hi Debs - good luck - my 3 messages would be:

  1. No-one should be denied the NHS care just because they have paid for a drug or service that the NHS cannot provide.
    2)We can mix and match private insurance/NHS care so why not with other drugs?
  2. The NHS needs to find a way of buying these drugs more cheaply and NICE needs to be quicker in it’s approvals process, especially where drugs have been approved in other countries.

Hard to be articulate on chemo but I’m sure you’ll understand what I mean!


Hi Debs - congrats on the invite! I’m sure you’ll be great.

My own personal opinion, for what it’s worth, is that individuals who have paid into the system, should not be kicked out of it just because they happen to have, or be able to raise, some money of their own. In other words, sick patients should not be penalised for the shortcomings of the NHS. If the NHS is short of money for drugs, or NICE is dragging its heels, then that is the NHS’s problem - it shouldn’t become the patients’. And I think we’ve all seen enough of the NHS to be able to identify where savings could be made to increase the funding for better, more effective, drugs.

I would go further and say that, I don’t think it is any of the NHS’s business how private individuals choose to spend their own money and I resent the interference. If our Lords and Masters, for ideological reasons, really can’t stomach the concept of people paying privately for cancer drugs and getting NHS treatment at the same time, they should refund a substantial amount of that individual’s NI contributions, because if NI is truly ‘insurance’ it should be possible to get a refund for breach of contract - (if NI isn’t ‘insurance’, then it’s a tax, plain and simple) - and to then use the money to pay privately for the treatment the NHS has decided you are no longer entitled to.

The whole business is so dishonest, too. A lot of us mix and match already between NHS and private, physio, dentistry, lymphoedema treatment, etc, yet it’s on this one issue that the Government/NHS seeks to penalise us… I think it stinks.

I know some feel that it isn’t fair that some people can pay for drugs and some can’t. (Life ain’t fair and we here know it!). But the issue is making the right drugs available to everyone, now, not punishing those who are putting everything on the line for the sake of their own lives. It’s so vindictive.

Sorry everyone - this was a stream of consciousness - bit of a muddle!

Best of luck on the day, Debs, what date is the forum?

Hi Geraldine
points 1 & 3 are on my list I have not had private med ins for 13 yrs so you may be able to help me. I have heard if you need byphos for bones you have to get these on nhs do you know anything about this.

Love Debsxxx

Thanks Bahons2 its 17th July committee room 9 House of Commons 10am start. I hate mornings!

Love Debsxxx

Simple:If a treatment that will extend life is available and the NHS cant/wont fund it then we should be able to self fund if we can without losing the benefits our National Insurance has paid for,often over many years.It is scandalous that this should be necessary but if it is then the option to choose should be ours.I would remortgage my house if I had to to pay for drugs to fight my cancer.I am allowed to remortgage for a house extension why not for a life extension?Go for it Debs.Vx

Hi Debs - My private health Insurance will only pay for acute treatment - they won’t pay for ongoing maintenance treatment for ongoing issues. Therefore they’ll pay for my chemo and avastin but not the biphos. Haven’t really discussed this with my oncologist - he just said don’t worry! Still getting all three bit in th private unit my guess is they aren’t billing AXAPPP for the biophosphonates…

Will talk to him nest week though to see if I’m going to get a bill for the zometa - hope not!

Hi Debs,
Thanks for being prepared to do this for all of our sakes. I admire your bravery and ability to think clearly…
If it would help at all I live in Herts and there’s a 30-mins fast commuter train service to London. It would be hellishly packed in rush hour but you’re more than welcome to stay the night if you would like. I really mean it!
Jacquie x

I would want to say that not allowing co payments is unfair BUT that the real issue is that everyone should have access to the same drug treatments based on clincial need and a discussion between doctors and their patients.

Go for it Debs.

best wishes


Debs - here are my 1 to 4!

  1. Patients want to co fund for drugs that are freely available in comparable countries based on their clinical need
  2. they are only co funding as NHS system denies access to cancer drugs,
  3. co funding is driving people into desperate situations ,people cannot afford to co fund,and they certainly cannot pay for all treatment privately - and we are seeing ridiulous pain being taken by people at worst stage of their lives
  4. other parts of our public services allow this without removing access to services

Debs - i am mixing and matching a bit - NHS pays for my arimidex and would have to pay for bisopohnates. PPP does not routinely pay for them unless you have a certain policy which I think is not available to individuals to but only sold to companies - it has a wording that says we will not make our usual exclusions on cancer. Even then they have asked me to pay 3 X for my zometa,as they usually exclude it,

I hope this is some help - but I think you know exactly what to say, I think I would just want to really stress the personal pain in this - politicians really want to make it a rich /poor, public/private thing. But really its about NHS not delivering and people begging for the privilege of being allowed to partially fix that with their life savings that should go to their families when they are gone.

Better stop!!

Thank you all so much I have decided to print these comments and give everyone a copy so please feel free.

Love Debsxxx

If the NHS is not providing a certain drug because they feel its efficacy is not proven, or it is not cost-effective then it is not part of the NHS Service. It is, therefore, nothing to do with the NHS if somebody wants to buy their own medicine. Surely it then comes into the same category as herbal medicines or other complementary therapies, which everyone has the right to buy if they want (and can afford it) without it affecting their NHS treatment. The problem would arise, I suppose, if the drug needed to be monitored by an NHS doctor or interfered with the treatment the person was getting on the NHS.

Thanks for doing this Debs


I’m full of admiration debs.
For what it’s worth my view is
Everyone should have equal access to all the drugs that established medical opinion feels will offer useful treatment
NHS treatment is not a gift. It is an absolute right earned by contribution to the system.treatment. It is not in the power of any institution to deny them access to it
If, because a drug has not yet been approved or is still on trial the NHS will not cover the cost of treatment then anyone should have the right to pay the extra if they can without losing the right to the free treatment which they have paid for. We accept this in dentistry, eyecare, residential care for the elderly etc - why should cancer be the exception?

Great news Debs, well done. You’ll do England & Wales proud, I only wish Scotland would review it as well!!


Debs…read an article in Guardian today about an ‘acrimonious’ split at BMA conference over co payments yesterday. BMA voted narrowly that the remit of the Richards review is not wide enough and are calling for a Royal Commission (which would take much longer) to review implications of permitting top up payments. Article by John Carvel and I’m sure you can find on-line if you google.


Debs - I think the other issue to raise is that no-one can really appreciate this issue until they are in the situation - somewhere no-one wants to be - get them to think how they would feel if their partner/child was in the situation of being denied care.


Hi to all
thanks for all your comments Jane I found the article just read it.
Jacksy thanks for the offer hubby has booked us in County Hall hope its a hotel sounds like it could be local police station or may even be mad house as I think all this banging my drum is driving him mad.(but in a nice way, he says hes proud of me)
I will be printing all these comment so I dont mind what everyones opinions are as long as these people realize we have them and consider them fairly.
I did not wake up one day and think co payment thats what I want to do. I was told there was a drug that could give me extra time but it was too expensive and the trust would not fund it, but if we could raise 60k they would treat me with it. It really did not leave us with any alternative how much value can you put on what could be an extra year. Anyhow thats how all this started for us.

Love Debsxxx

Hi Debs

County Hall hotel - I think I know it, have walked by it many times is a very nice hotel and VERY conveniently located near westminster Bridge -suspect that you will like it! Have a nice time there,

What I can’t understand (forgive me if this is boring repetition) is how anyone has the right to deny NHS treatment to anyone who has been paying Nat Ins subscriptions. Can this possibly be legal?

There is also a problem in that NICE will approve the clinical use of a drug but does not at the same time decide on its economic viability for use in the NHS, thus enabling it to be used within private practice but not in NHS practice. The system has created the problem.