Have your say on co-payments/Top-ups

Hello everyone on the forums

If you are concerned about the issue of co-payments can I ask you to read our open letter below.

Consequences of Paying for Additional Private Drugs for NHS Care: An open letter from Breast Cancer Care

How can Breast Cancer Care ensure that we reflect the views of people living with, and affected by, breast cancer as well as ensuring that any policy introduced by the Government does not widen inequality of access to drug treatments?

You may have heard that the Government is, rightly in our view, taking a long hard look at whether it is acceptable for people to ‘top up’ their NHS care by paying privately for drugs not routinely available on the NHS. Under current practice, people who wish to pay for a drug in this way are then usually expected to pay for the whole of their treatment privately.

Breast Cancer Care would like to see this resolved because we feel it is unacceptable that patients are having to fight for drugs when they are already unwell. This can place enormous anxiety on families who feel that newer treatments are being placed beyond reach at what already is a very stressful time. We are also very concerned that there is a ‘post-code lottery’ where top ups are being allowed in some parts of the country and in some parts of the healthcare system and not in others.

The rising cost of targeted cancer treatments is a major challenge for the NHS and many patients and their families tell us that in such difficult situations they will of course do all they can to access the clinical care they have been told they could benefit from. This is completely understandable.

However, concerns have been raised that if a co-payment system were introduced greater inequalities will develop in access to health care and health outcomes, with some treatments only available to those able to pay or able to raise the money, perhaps only by placing themselves and their families in severe financial difficulties. Our vision is that everyone with breast cancer gets the best treatment, information and support whenever they need it. Co-payments go against the principles of free healthcare for all, regardless of ability to pay, which as a charity we support as one of the ways of achieving our vision.

The Government’s review of its position on top ups is an important opportunity for people affected by breast cancer to influence policy on this issue. You can feed your views in to this review by going to

zapsurvey.com/Survey.aspx?id=3050fa7a-2413-46bc-bbe0-002c96b451cf

and completing the questionnaire the results of which Breast Cancer Care will submit directly to the Government. Or you can email the Department of Health direct at: <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%61%64%64%69%74%69%6f%6e%61%6c%64%72%75%67%73%72%65%76%69%65%77%40%64%68%2e%67%73%69%2e%67%6f%76%2e%75%6b%22%3e%61%64%64%69%74%69%6f%6e%61%6c%64%72%75%67%73%72%65%76%69%65%77%40%64%68%2e%67%73%69%2e%67%6f%76%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script>

We are aware that some of you are already debating this issue on our discussion forums. This thread has been created to highlight this issue further. This debate will inform and, we hope, deepen our thinking on this issue. We will take into account views expressed on our forums in our own submission to the Department of Health. We will ensure that any material drawn from on-line debates is done so anonymously and comments will not be attributed to individuals (as set out in our discussion forum terms and conditions). We will submit our response to the Department of Health in mid-September, if anyone would like to receive a copy of this submission, please contact our User Involvement Facilitator, Vicky Lane, at <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%76%69%63%6b%79%6c%61%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%22%3e%76%69%63%6b%79%6c%61%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script>

If you would like to read a sample of press articles on this issue, please follow the links here:

Financial Times

BBC

We look forward to engaging further with you about this issue.

Policy and Campaigns Team, Breast Cancer Care
August 2008

I like the letter. I think you are absolutely right to place the co payments issue in the wider context.

Jane

With due respect, to say that co-payments goes against the principles of the NHS is a complete hare.

When the NHS was set up, there was no consideration of the possible developments in treatments; it was formed on the basis of a relatively simple system of patient care with GPs on the front line and hospital care for emergency and chronic care. The costs of treatment of illnesses has risen in a way that was never foreseen, but should have been considered.

Apart from that, the idea that if a person is prepared [at their own cost and possibly leading to personal difficulties] to fund additional care over and above what the state is capable of providing then that the person should be refused care for which they have already paid through taxation, is an abominable concept. If this is the stand of the government, then there is a good argument that their contributions to National Insurance should be returned or their taxes adjusted accordingly.

There will never be a situation where health care for all will include all possible means of health care.

Having finally recovered from the effects of radiotherapy to my brain I am back in action re co-payments. I beleive co-payment is the way forward, a method of accessing new drugs and treatmetns and proloning our lives and the quality of life, keep us active and productive, not just alive. I beleive that persuing the issue of co-payment will force the government to re-think NICE and funding generally. They wish to avoid a 2 tier system (it already exists) so will be forced to permit everyone to get the drugs they need I was interviewed yesterday by Sky News on the subject of co-payment. The programme, “The Price of Life” will be shown on Sky News on 9th September. The dog got in on the act, she probably looks better than me!! Its a rolling news programme and will be repeated all day. We all have the right, the democratic process, to express our views and stand up and be counted. Make a difference3, make a fuss.
Mills

Blast - just wrote a really long contribution to this and when I tries to preview it the whole thing vanished!!! Feeling discouraged now so will come back and have a go later.

Barbara

I find this question in the BCC survey interesting:

“In your opinion, if patients are allowed to top up, would this put patients who could not afford to do so at a disadvantage?”

It can be argued that patients who cannot afford to top up could be seen to be disadvantaged relative to people who can afford to. But allowing patients to top up would not lead to reduction in NHS treatment for those who cannot afford to top up. Therefore the use of the term “disadvantaged” could be construed as unnecessarily emotive.

I think care has to be taken to distinguish between those who would not be able to afford to top up and those who would choose not to. Truly well off people would not waste time haggling with the NHS. They would just go to Harley Street or abroad to get what they want.

Many people who are not particularly well off choose to pay for private health insurance or get it as part of their employment package. As we all know, they still pay in full for the NHS services they don’t use through their taxes.

The NHS does not withdraw NHS services from privately insured patients, so why impose this for co-payments and argue that they go against the principles of free healthcare for all? These principles were breached long ago, and by the NHS itself when it messed up NHS dentistry and free eye tests and gave us the inequalities between England, Wales and Scotland in respect of prescription charges.

In my view, banning co-payments would not speed up delivery of Breast Cancer Care’s vision that everyone with breast cancer gets the best treatment, information and support whenever they need it. Instead I think we would see “dumbing” down of innovation and progress in breast cancer treatment where everyone only got what the NHS could afford which is likely to be mediocre relative to treatment in other European countries.

Co-payments could set higher targets for standards of treatment and spur the NHS to devise some sensible ways of trying to make sure the best drugs are available to as many people as possible. Doctors and Scientists tell us that breast cancer is not one disease and that future improvements in treatments will rely on treatments targeted to individuals. These treatments are not going to be cheap.

I think the NHS should stop wallowing in its 60th anniversary and think about how it is going to best serve cancer patients in the 21st Century. Withdrawing NHS care from people who choose to top up does nothing to achieve this and seems rather spiteful.

Very well said Daphne.
I thought the survey was “weighted” too and the question you cite jarred with me.

Yes, very well put, Daphne; however, I think that the whole copayment issue is really too minor either to jeopardize the NHS or to solve the problem of the NHS’s slowness in adopting innovations. The drugs that are causing the problems are so expensive that we are talking relatively small numbers of relatively affluent NHS patients who will be able to afford them. While I started paying for herceptin (which could be life-saving), even I am not so sure that I would shell out for something like avastin which costs four times as much and has rather questionable benefits.

I don’t like the assumption in this debate that top ups are only about terminal patients. What about a patient like me who needed a cutting edge treatment for a primary that was very likely to recur? By paying my own money, I greatly decreased the likelihood of having a recurrence and becoming a burden on the NHS and perhaps the state. At the same time, by opting out I increased the likelihood that I would be around to pay taxes.

I think that the bigger issue is that NHS cost accountants base their cost effectiveness estimates on a figure which is much lower than other European countries, which is a real break on innovation and quality. I wonder if more people would get private insurance if they knew that the NHS valued an undiminished year of their life at around 30,000 pounds.

I agree, top ups need to be looked at in the wider context of how other European Countries make new treatments available to the people that need them, and not just for terminal conditions.

It seems to me that it suits the Government to try to whip up dissent by focusing on whether or not top ups are “unfair” because it detracts from hard questions that it needs to answer about negotiations between the Government and Pharmaceuticals on drug prices and inducements to keep the Pharmaceutical Companies investing in the UK rather than other European Countries. The Government talks about aiming for “World Class” cancer services for the UK, but Copayments seem to be used as a smokescreen to divert attention from how well the UK is really doing in comparison to the rest of Europe in respect of innovation in cancer treatment.

I hope Breast Cancer Care and other UK Cancer Charities do not get seduced into focusing solely on whether or not Copayments are fair when there are much more important questions to be answered.

Perhaps the question everyone should ask themselves is if you are ill and value a year of your life as worth more than £30,000 and the NHS doesn’t, should the NHS be allowed to withdraw free access to your other NHS treatment that and your family have helped to pay for through taxes, simply because you choose to buy a drug that your doctor says will help you, but is unavailable through the NHS? The same applies if it is a member of your family that is ill.

The Patient’s Association website invites people to complete a Copayments survey. I like it because it does not use the term “disadvantaged” and you can also comment at the same time on another controversial topic - Polyclinics.

When Breast Cancer Care’s Submission goes to the DoH, whose views will it represent? Will it ultimately be the view of the majority of people who responded to the survey or will it be the views of Breast Cancer Care staff? This is an important question because the open letter indicates that Breast Cancer Care does not currently support Copayments.

Also many breast cancer patients choose not to be affiliated with charities, so it is important that their views are heard too.

“Co-payments go against the principles of free healthcare for all, regardless of ability to pay, which as a charity we support as one of the ways of achieving our vision.”

I absolutely 100% do not agree that paying for drugs freely available in Europe using my life savings if neccesary- - gos against the principle of free healthcare for all. Why does the admirable prinicple of good healthcare available for all go hand in hand with having to accept some quasi governmental organisation saying my life is worth 20k per year and no more than that?

Catherine

Now I have read the survey, It seems to me this survey has been clearly weighted to imply-

  1. co payments place other patients at a disadvantage …can someone explain why coldly and cruelly billing people for their ‘approved’ improves things for others.

  2. imply that Doctors will exploit co payments to make profits for their hospitals or for themselves.

I am a bit disappointed with this survey. To add balance to it you could add a question like- Do you agree it is right to make patients pay for all their NHS care including radiotherapy, surgery etc, if they do not agree that their life is worth more than 20-30 k per year, and take active steps to improve their life expectancy?

catherine

On a slightly different theme, but related, I am using my health insurance to pay for my treatment. I have statements from my insurance company, showing I have thus far saved the NHS over £15000 since dx in February, and have also allowed somebody using the NHS to be seen quicker than if I had been taking 8 weeks in the queue for treatment. I pay extra for my health insurance out of my net income, after the National Insurance contributions and income tax I am obliged by law to pay.

I developed phlebitis and neutropenia and was admitted to my local NHS hospital as an “emergency admission” at a weekend, staying 5 days. For this I received a bill for £2300.

I am currently raising this with the Scottish Government, as I could have had all my treatment at their expense, I have saved them money and they have the audacity to bill me for something I have already paid for, because I am a “private” patient - who did not receive any “privileges” in the NHS hospital I attended.

What are your thoughts - it is very similar to the “top up” idea they are proposing in England.?

Sue

Hi - this is not off topic at all its the same thing - you are being penalised for using your private insurance to pay for your cancer care, and because of this they are now seeking to bill you for your NHS care. The government want to stop people paying for additional care in the NHS and this idea logically extends to punishing prvate patients in the same way

Have you paid? I am afraid something like this could happen to me…you could drop a quick e mail to Doctors for Reform asking for advice,

Catherine

I wrote a very strong letter to Secretary of Health (or whatever she is) in Scotland, enc all the statements! I also copied my MSP into it and my insurance company, who are now investigating it themselves and refusing to pay straight away. I got a patronising letter from some anonymous civil servant, whose rank is unknown, and have fired off emails to all of the above again…not making “comments”, making “complaint” about how NHS in Scotland is funded etc.

Doctors for Reform? Would appreciate more information about that.

Glad you think it’s related…I wasn’t sure. But this is ALREADY happening in Scotland, so is probably happening in England too.

I personally do not intend to let this matter rest - I am sure Secretary of Health will be sick to death of me by the time she gives in. A bald woman in the papers never makes the govt look good!!!

Go girl, Westside Sue, give them hell. I have been battlnig for over a year now and feel things are about to change. The NHS has to stop victimising patients who pay privately or through insurance for treatment they should be providing. The NHS is run by faceless morons who’s only job seems to be meetiing targets, unfortunately there does not appear to be one for us. NICE tells us the drugs are too expensive and not cost effective. NICE costs us £30 million per year, hows that for cost effectiveness. There are funding issues within the NHS that need to be addressed and it may be that generally we pay more… The population is getting older and perople’s expectations are higher. Companies are developing new drugs and treatments and the NHS cant/will not pay for them. As the only purchaser of these drugs the NHS should be negotiating a good price, after all it make economic sense when you think of supply and demand. The American medical insurance companies have forced drug companies to reduce their prices, why can’t the NHS. The campaign by doctors for reform is gaining pace and more and more doctors are speaking out against the NHS. To see how they are doing you can access them at “the The Times & The Sunday Times: breaking news & today's latest headlines” I feel that this is a wake up call for the NHS and co-payment will pave the way for free treatment for all, as they want to avoid a 2 tier system and avoid looking stupid as we already have a 2 tier system and at least 5 PCT/Trusts, that I know of, are at pesent allowing co-payment. Good luck. Mills

Another twist to this. I am a trustee of a small charity that raises money for the local breast unit to help it buy advanced equipment to benefit its patients before the NHS will fund it.

A few years ago we helped to pay for a Digital Mammogram machine to support their One Stop and Follow up clinics. The local Private Hospital does not have Digital Mammography and hasn’t set any timescales for getting it.

Does this mean that my charity has created a two tier system, not only for the NHS patients that aren’t fortunate enough to live near enough to our our breast unit to access Digital Mammography, but also for local private patients who can’t access it either because they have dared to trespass into the “dark side”.

Will we and other charities who have saved the NHS money be offered our equipment back so that the NHS principle of equal access to care is maintained? Or to put it another way - if everyone can’t have it, nobody is allowed to have it.

Doctors for Reform can also be found by searching on the internet.

The comments made on this site powerfully reflect what a complete shambles the system is at the moment and the whole thread should be forwarded asap to the Dept of Health.
My grandmother had tests done privately after fainting - they revealed cancer and she was treated in an NHS hospital.
My first lump 10 yrs ago was diagnosed by BUPA but was removed by the NHS.
I underwent 6 years of private IVF treatment. However my GP prescribed all of my medication on the NHS and obviously I went on to have my child within the NHS system.
Their are tiers upon tiers and layers upon layers everywhere.

Westside Sue - don’t hesitate to go straight to the press on this. The more that these stories “get out there” the better.

I forgot to mention that I will be attending a Citizens Jury organised by Cancerbackup on the issue of co-payment, where we will be able to question “experts, stakeholders and supporters” on the subject. I will, of course be putting my point of view but I am happy to convey the opinions voiced here. If there are any specific questions you would like me to ask then please write them here. I did an interview for Sky News which will be shown on September 9th. Its called “What price a life” so attracting publicity does bring the issue to the public at large and hopefully will put further pressure on the government. So ring your local press, you never know where it will take you/ Good luck

Mills

I would like to see the legality of withholding NHS care tested in court. On what basis is any one - civil servant or health trust manager - entitled to refuse care to someone who has spent their working life paying into the system? Leaving the issue of co-payment to one side, NHS treatment is not a gift to be bestowed at the whim of the system, it is a right which should be enjoyed equally by all.
The comment on here about the inconsistency of the system are absolutely right.
I would prefer everyone to have equal access to all the medication they need, but for some to be able and willing to pay to top up does not make the situation of those who cannot pay any worse. What it does do is cause severe embarrassment to NICE and health authorities - especially if it becomes clear that there is a difference in survival time of those who have access to a wider range of drugs.

Forgot to mention that the Citizens Jury is being held in Central Hall Westminster and the outcomes will be fed back to Prof Mike Richards (National Director for Cancer, England) and will influence (hopefully) the review he has to give to the Secretary for Health, in October
Mills