Witholding NHS care is probably illegal isn’t it? I think Doctors for Reform released a statement about that recently. They are seeking to challenge the top-up ban in court having got some top level advice from legal bigwigs that it is legally suspect.
Gosh, you ladies really know your stuff - I’m very impressed with the knowledge you have gained. I was just thinking to myself “this is wrong and I’m not taking it” but you are going out and doing something about it!
All the best with your debate Mills - and to the rest of you. I know where to come if I need help fighting my corner on this issue!
Westie xxx
Just looked up Doctors for Reform website - and found that "The Department of Health has argued strongly against “top-up” payments. Alan Johnson, the Secretary of State for Health, has said: “A founding principle of the NHS enshrined in every single code of practice – most recently the 2003 code of practice – is that someone is either a private patient or an NHS patient. They can be a private patient and decide to resume their treatment as an NHS patient, but they cannot, in one episode of treatment, be treated on the NHS and then allowed, as part of the same episode and the same treatment, to pay money for more drugs” (Hansard, Column 724, 18 December 2007).
However, as NHS patients we are EXPECTED to pay top up fees for dental & optical costs. They have to decide at what point a top up fee is or is not appropriate! It seems to me the NHS wants to have its cake and eat it.
Sue,
not sure if you read on secondaries “Our Trip to Westminster” and also on this one NHS Co payments. I have the minutes to the meeting at Westminster if you or any of the other forum members are interested I will email them. I think you would have to pm me. Its quite long but I think very interesting.
Mills
its really nice, no I wont use that word its really lovely to see you back in action.
Love Debsxxx
Given the current Govt’s chances of getting back into power are slightly less than me winning the Olympic gold medal for pole vaulting and given that the Tories are very much in favour of tiering the health service and looking at reform like social insurance etc I think that Mr Johnson’s opinions won’t count for anything soon.
I’ve been contacted by Breakthrough Breast Cancer (I’m a sleeping member of their Campaigns and Advocacy Network…CAN) who are holding some kind of ‘Citizen’s Charter’ event on co payments on September 3rd. I probably won’t be able to go but anyone interested pm me and I’ll give you contact details of the woman who is looking for participants. I’m still awaiting an e-mail about precisely what’s going to happen at the meeting.
Jane
This may be wandering off the point slightly, but do anyone else’s hackles start to rise at the prospect of the Government/NHS/NICE telling me what I may or may not spend my own money on?
If a drug is available, medical opinion deems it suitable and my money is honestly come by, what right does anyone have to tell me (as someone who has paid into this alleged ‘insurance’ - backdoor tax, if we’re honest) that I face sanctions if I buy it?
Whoever mentioned that the NHS is not a charity is dead right - we’ve all paid, we’re all still paying for it - we’re all entitled to it. End of.
What a pathetic political football healthcare has become, eh?
S
Hello everyone
I just wanted to give some further information on one of the posts. The co-payments Citizens Jury that Mills mentioned earlier is in fact the same one that JaneRA has been invited to - it is being run by Breakthrough Breast Cancer, not CancerBackup and will take place on 3rd September. I know Breakthrough will be sending out more information shortly regarding the event to all those who have been invited, but I can try and find out more information if you don’t hear from them soon.
Thank you so much to everyone who has contributed so far, all of the comments have been very interesting - keep them coming!
Best wishes
Vicky
If they didnt waste 60million on NICE we wouldnt have the “these drugs are not cost effective”
Is NICE cost effective?
My opinion is they are not fit for purpose.
Love Debsxxx
Sorry mills…hadn’t seen your post.
This is the information I have received from Breakthrough:
Breakthrough Breast Cancer would like to invite you to attend a free and innovative event on the issue of top-up payments. We are hosting a Citizens Jury to open up a debate about the consequences of additional private drugs for NHS care and find out what our stakeholders think about the many issues involved.
“Top-up payments” refers to the general principle of paying for additional care on top of the care that is available to all on the NHS. As increasing numbers of advanced and expensive treatments are developed, the issue of what the NHS can, and should, pay for is receiving more and more attention.
A Citizens Jury is an interactive event where each person is invited to become a juror to the debate; listening to a range of evidence on the issue, having the chance to ‘cross examine’ expert witnesses and coming to their own personal verdict about the consequences of additional private drugs for NHS care. We are delighted that Polly Toynbee, celebrated journalist, will be joining us in the role of Judge and Chair for the Citizens Jury.
A limited number of places are available and will be allocated on a first come, first served basis. RSVP to Sonya Figueroa on 020 7025 2487 or via <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%73%66%69%67%75%65%72%6f%61%40%62%72%65%61%6b%74%68%72%6f%75%67%68%2e%6f%72%67%2e%75%6b%22%3e%73%66%69%67%75%65%72%6f%61%40%62%72%65%61%6b%74%68%72%6f%75%67%68%2e%6f%72%67%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script> as soon as possible.
We will be feeding the results directly into the Department of Health review and will be joined by Prof. Mike Richards (National Cancer Director) on the day. Do let me know as soon as possible if you would like to attend.
____
Apparently the ‘jury’ will be 36 people…patients, scientists, doctors etc. I’m not sure I can go as that may be the day I have a CT scan or restart treatment. It looks exciting…
Jane
In an ideal world NHS patients would get the best possible care on the basis of clinical need. However, people should be allowed to spend their own money to buy life saving drugs if their clinicians recommend them and they are not available on the NHS. I am not currently affected by this, but why should I be “punished” if I pay to top up my care in the event this became necessary. The goal should be to level up care for all, not to level down to the lowest common denominator. If these inequailities are seen as unjust and polilitically unsustainable then further solutions need to be thought through to bring treatment in this country up to the level of the best international standards. I do appreciate that taxpayers money is not unbounded, but the NHS should have huge negotiating power with the drug companies.
i think as the climate goes at the moment, well, if people can co pay and the drugs prove to be effective then nice have no choice but to agree the use of these drugs on the nhs, it would be even better if people co payed then were refunded their money, i know this isn’t right, but at the moment what choices have people got if they want drugs that cost over £30000? none. so by people who can afford to co pay and the drugs that they use are effective then surely that will open the door for better cancer drugs in this country, and of course its not right that people who have paid into the nhs all their lives should pay, its not right that people should have to lose everything just to stay alive, but i really think that is maybe a hidden agenda of this goverment and nice to ensure they screw the tax payers even more!!!
Alison
Another 50 million dollar question which we shy away from discussing is: Are these drugs effective? And what in any case does effective mean?
Haven’t read it yet but is a NICE article in Observer today about the profits of the pharmaceuticals. NICE is not the only nasty.
Jane
There’s one in the Times, today, too.
Different slant, tho’!
It can be read online at the timesonline.co.uk website under Health News.
i don’t know, NICE are the ones who have the power to approve drugs, also, its up to the pharmaceuticals to present their drugs to NICE which is not happening. then we have the PCTs that discuss what patient should have what drug, no matter which way we look at it, if the drug is over a certain price then it seems that we are on a hiding to hell. well, i think we have to wait till October to see what is really going to happen by way of co-payment.
Alisonxxx
On Radio 4 just now, it was suggested that new and relatively unproven drugs should cost less from the drug companies to begin with and increase in cost as their efficacy is seen. This approach was apparently mooted by the boss of GlaxoSmithKline.
Jenny
Thats probably a topic for another discussion Jane and one i wonder about too.
Its constantly said they wont fund the drug as it could only give the patient a further 6mnths.
Rx…
Hi to all,
when I was told avastin could help but was very expensive 60k and I started making a fuss re co-payment. At my next appointment my onc told me Roche had capped the price to 28k. No publicity no mention anywhere.
Love Debsxxx
Hi forum members
Thank you to everyone who has completed our online survey on co-payments. In order for us to analyse in full the responses to the survey in time to feed into the Department of Health review, we will be closing the survey this Wednesday (20th August).
If you haven’t completed the survey yet, we would be very grateful if you could take a couple of minutes to do so.
While our survey may be closing we would welcome further contributions to the ongoing debate. So please carry on letting us know what you think on this thread
With many thanks
Chris Quince
Policy and Campaigns Assistant
I just wanted to let you know I got the bill for £2300 waived. This was because the finance dept actually got the information they required after my discharge, and to have pursued it in the courts would have resulted in their losing. I couldn’t have done this by myself and had to use a CAB service - IASS officer took up my case and tracked the bill through the system until she found out what actually happened.
There’s STILL the actual legal issue of charging people for all treatment when some of it is private and it’s something I intend to raise/campaign about with Scottish Government when I feel more like myself and am really looking for a fight!
Thanks for your help with this matter
Westie xx