Kings Fund debate 11 September 2008. What is fair – should patients be allowed to top up their care?

by Andy Cowper, editor, Health Policy Insight

This morning saw me out of bed disgustingly early to get the Kings Fund for their latest debate, What is fair: should patients be allowed to top up their NHS care?
Moderated by Kings Fund chief executive Niall Dixon, the panel of Andrew Dillon (NICE), Jo Webber (NHS Confederation), Karol Sikora (CancerPartnersUK and Reform) and Martin Gore (Royal Marsden) covered the issues thoroughly and thoughtfully.

Andrew Dillon, chief executive, NICE

At NICE, we’re in the happy position of being neutral on top-ups. You'll have seen the Daily Mail headline that one person in three is now employed by NICE! (laughter)

25% of NICE work has some positioning of optimum use of treatment, defining within the population who may benefit most

We’ve done work for Mike Richards on the top-up premium and how to calculate it. What is a 'top-up'? Is it the difference between the cost of current standard care and the cost of a new intervention? If so, is current care at tariff or at local private practice rate? Is there a significant difference between a fair cost-effective rate for a new intervention and the manufacturers’ price? This is more complex, but we must understand what people are being asked to top up. NICE. Also mocked up patient information leaflet – if top-ups are introduced, NICE is in a good position to help with providing people with core information to take their decision whether to fund topping up, as well as information on the core NHS offer so they can understand the prospects with spending their own money – will the intervention benefit them?

Because we in NICE are neutral, if the NHS decides to allow topping-up, NICE will play whatever part we're best able to.

Jo Webber, deputy director of policy, NHS Confederation

I’m happy to be neutral – it’s an interesting place for the NHS Confederation to be! Various practicalities emerged from our seminar and survey on practical issues. The list of these numbers 13 – maybe that’s fate?
1. how do we pick up costs when patients run out of money but have shown a clinical benefit. there are already cases where the drugs are working for people responding well to Avastin
2. what about people wanting a superior level of service? though this seems a well-defined limited group, the ‘thin end of wedge’ argument must be bought into place. The broader issues are not going away after cancer. What if you want a superior hip joint or lens? This won’t be limited to high-cost drugs
3. There are clinicians with ethical objections to topping up – some seriously disagree
4. What about two patients sitting in beds alongside each other one topping up and the other not? Do we physically separate topped-up from not? What about their visiting relatives?
5. How to price top-ups? Administration, extra monitoring, staff time, diagnostics, risk of side effects and adverse reactions will all feature. What to do when toppers-up come back in to the NHS with these?
6. A national price, or local variation?
7. Who provides patient information on potential health gain and protection? Do we cost in potential for second opinions?
8. Will audit and review be new NHS costs, or in the top-up?
9. FT members private patients cap – unless this is changed, it will be hard if not impossible for FTs to deliver top-ups as a private patient income element. the cap has to alter if top-ups come in
10. Liability – NHS remains liable for topped-up care it delivers, even though it has said a treatment is not cost-effective and should not be provided. Insurance component
11. How do we define elements of care? NICE work may prove useful. it’s hard to pick out what must be in the core NHS package.
12. Who collects payment? a mundane but crucial issue - will there be perverse incentives for acute trusts? maybe PCTs collect?
13. How wil we do debt recovery if a patient dies? this could bring as lot more debt into the NHS

NHS Confederation members find this hard territory and hard to decide. The view overall is to keep top-ups as limited and well-defined as possible. This is the start of a journey, not the end, and the decision on this will form a basis for later, wider issues.

Professor Karol Sikora, CancerPartnersUK / Reform
Get real. Society has moved on, people are voting for different politicians and a different health service. We’re servants of people’s wishes. I've got a letter from PCT will withdraw NHS care from a patient with liver cancer if he takes the only effective drug privately. Natural justice is not being served.

Total healthcare costs rise. Medical inflation is about 10% a year, £50 billion. 1 pence in £ on income tax raises just £3 billion. No-one will vote for 60% income tax.

Top-ups are already here – dentistry, physiotherapy, complementary therapy. People pay already and some of it is unregulated. Implementation difficulties? Private wings already exist in the NHS – it's all there, service-driven and consumer-driven. People are not service users, they're consumers. The Blair reforms have brought real choice into medicine.

Current system is unfair. I’m a fan of NICE; its work is essential, but too slow. Our spending on cancer drugs is too different from Europe’s. On cancer overall, we're spending about the same as Europe but less on cancer drugs. It’s ridiculous to have 149 PCTs, all with different decision-making committees. exception committees not geared u for work. Finance directors won’t spend money they can avoid spending, but the High Court decision will have big implications, ruling that the decisions of the PCT committee and appeal committee were both fatally flawed.

If people make a fuss over refusal, they generally get the drug (even if on the court steps). Which is patently unfair, against GMC duty, but also the quiet majority don’t get care.

Scottish government are in favour of top-ups, and are already doing it in most places. Under a European directive, you could have to show us at the Hammersmith your passport to let us know which set of cancer drugs you can access.

If we leave the status quo, it'll go underground. You can easily see internet pharmacies selling IV and oral cancer drugs – but warning you ‘don’t tell your NHS consultant you're taking them or you’ll lose your care’, which will be completely unsafe. There are tremendous opportunities if we have rigid top-ups: the system gets new consumers, more money, and we convert patients from service users into consumers. We need to lower hospital activity, PBR should drive this, but it’s not realistic yet. The driver for 'better' is a voucher system – top-ups will help us deliver to the benefit of all services.

Professor Martin Gore, medical director, director, Royal Marsden NHS FT
My own views on top-ups shift. In the oncological community (for which I can’t claim to speak), there’s little disagreement on the issues. Disagreements are around the solutions, but they're flaky disagreements - not hard-nosed or entrenched. People know it will be a hard issue to resolve. It’s symptomatic of the broader NHS issue – how to deliver good, up-to-date caring care within a limited budget. We need to look at our systems and see how to deliver more cost-effective care.

We live in a mixed economy and a mixed healthcare economy. Cancer drugs are a quantum difference – a one-off private dental crown, or a Viagra, or paying for a better wheelchair are just not in the same league as cancer drugs. Not because of the cost per shot, but because the drugs turn metastatic cancer into a chronic disease lasting months or years, like diabetes or arthritis.

There are major problem with paying for treatment. No romanticised 1948 version of the NHS from me, but we’d forget history at our peril. Always remember where the NHS came from – a system where you had no treatment if you couldn’t pay. Humiliation appearing in front of panel to become a stignatised ‘panel patient’ - for patient and family. In the present, treatment is meant to be according to clinical need, and not ability to pay. Do not forget.

Real concern about top-ups is detail, about quantum and not taking anything from NHS.

I see three points of agreement. Firstly, as GMC-registered clinicians and for best practice, service fragmentation should not occur - which it will if you're going down the road to a private doctor for the third cancer drug that's non-NHS.

Secondly, the deliverers should not get a profit if a top-up system comes in. Thirdly, those who top up and those with right having saved their money and want to spend should not take resources away from NHS that would not otherwise have been used.

The final issue is social, though: it's around quantum. People won’t be able to afford many and likely to be discriminatory. With growing chronicity of treatment, the poor and social groups like pensioners, will be unable to afford top-ups. deserving end to loves given to country through work and taxation. Maybe Karol Sikora thinks so – I don’t.

COMMENTS, QUESTIONS AND DISCUSSION

David Furness, Social Market Foundation: There are already social groups who can’t access services.

Hamish Meldrum, BMA: I'd suggest a fourth area of agreement: this is a symptom of a needed wider debate about what the NHS is for, how it's best funded, what are the range of things it will do and what do people do when the NHS won’t cover a treatment? Without this debate, which involves very difficult answers, there’s a danger of top-ups coming in as a knee-jerk response to a wider symptom.

Niall Dixon (ND): Are you arguing against this being a containable problem?

HM: There’s huge risk in answering a small part of the problem, it’s not principle and precedent, which are already broken and set. How much more follows one small breach? There are ramifications. I don’t think it’s potentially containable in the wider system.

ND: We’ve breached in the wider system on dentistry and prescriptions, etc.

Anna Dixon, director of policy, Kings Fund: We’ve focused on NICE decision about drugs, huge local variation by PCTs. What are the panel's views on improving PCT decision-making about the NHS offer and the role of exception committees?

AD: NICE are not here to eliminate the postcode lottery, and we have no executive powers over NHS trusts. NICE guidance only works if individuals and organisations put it into place. No excuse for continuing variability once ruled, disappointing, try to push, persuade and support in guidance. There is now much less variability especially with technical appraisals - but this is less true of our clinical guidelines, sadly. Exceptional decisions inevitably arise locally. strong case for national guidance for what good-quality processes to apply. Decisions may still then vary, but we could do a toolkit.

JW: There’s a role for national guidance on what a good process looks like, PCTs should work collaboratively around decisions, on more difficult issues. to be welcomed, but the system’s evolving, exception reporting has only been growing in past few years But local variability is needed – no two cases are the same, and this may be something to do with the individual. Variability is about local processes.

Robert Creighton, Ealing PCT: From our perspective, the exception process gets better all the time. Decisions remain hard, NICE is essential and the further its work goes, the better. But I and colleagues would welcome guidance and support that our local decision-making is legal and appropriate. PCTs are already supporting each other. It's a journey, not a perfect situation, but the world is messy and we're not going to get compete clarity. If we allow this debate to be too big and broad, we'll be opening issues we can't control, but we should try to contain top-ups.

Royal Pharmaceutical Society: If we keep the scope local, top-ups seem to work in a sector like community pharmacy where the private sector runs well alongside the NHS well. It would be ridiculous to get to a point where you can't get an NHS prescription with a private prescription. It seems to work, people seem happy with it. unravel, crazy thing like NHS script preventing purchase

RCN: As well as doctor-patient issues, what about a nurse treating two patients, when one is topping up and the other isnot? How to deal with that? This affects the professional relationship between the nurse and the patient. nurses concerns about business class vs. no-frills not trained and educated – regulatory and code of conduct issue. Cake-and-eat-it humanity issue too.

Macmillan Cancer Support: This debate is really a symptom of the underlying issue. The speed and processes of NICE must improve; there are tough issues around decisions for rarer cancers, timing of what-if discussions on end of life, need these before deciding high-profile issue. Our focus groups on co-payments led to more criticism and disagreements. The real challenge for society is how to have a sophisticated debate on a complex issue.

Evan Harris, Liberal Democrat MP and BMA ethics committee member: I'm moving towards supporting top-ups, but I'm deterred by politicians like Karol Sikora using this issue to hijack the debate onto vouchers. How can we already top-up to ineffective complementary care (which isn’t even cost-effective) but ban this? Ethically, the practical argument about doctors who disagree with topping up – well, they must swallow their disagreement, as they have a duty of candour, and patients have a right to know if they can afford to top-up so that they can - and patients who can't afford top-ups also have a right to know about the effects of cutting NHS spending.

Niall Dixon: Evan, is this a slippery slope? If we go pro-top-ups, is the all-NHS-or-all-private divide sustainable elsewhere?

EH: I think this isn't a drugs-only issue, but pragmatically, we can try to solve that issue first. I think we can avoid profiteering, without going to inequitable vouchers which undermine the NHS. must swallow existing unfairnesses, we have a moral duty to make them clear.

James Gubb, Civitas: I'm not sure the debate's net is cast wide enough, as it's generally talking about entitlement to high-cost cancer drugs - only a tiny bit of what the NHS provides. There’s been no debate on what pubic may or may not want to top up. In Europe, high-cost drugs are available, but people top-up on physiotherapy, dentistry … do we need a wider debate?

Ian Reynolds, Wandsworth PCT: Jo Webber's point of hard-to-collect payment and end-of-life issues, well, we could collect in advance, but I would be concerned. We are already being sent bills by patients refused by our exception committee for £1,000s - we're contesting this and I think it will end up in court. How will we collect top-ups?

JW: Payment is very emotive, especially when a patient dies after treatment. where the practical and emotional collide. Cancer drugs are only cost-effective if the patient is a responder. It’s a hard position for PCTs.

MG: On the central question of payment, there are two choice – collect up front, which is prohibitively expensive, or do it as you go, then what to do if a patient is responding but their money runs out? My view of cost-effectiveness is that we should stop trying for a number, which moves along the patient journey, and varies by response to the drug. I think we should separate effectiveness from cost. PCTs should get numbers separately on a drug's costs and on its benefits, and separate the discussions, particularly if it's top-ups. In oncology, you alter treatment iteratively, so the point of chronic cancer will shift. It will cost an absolute fortune, so the argument sort of falls apart. The only ones who can afford it are those for whom there’s no benefit – it’s a bizarre discussion.

ND: Social care puts a charge on the estate if the house isn’t sold?

JW: We could go the insurance scheme route to fund top-ups, but need to work out what that means.

Laurie McMahon, LOOP2: A couple of unraised points: if we allow top-ups, what about insurance against top-ups, and also what about charities stepping in and try to draw money from the public to give deprived people equal access? According to Karol Sikora, we spend as much as other Europeans, but disproportionately less on cancer drugs. His inference is that we’re spending in the wrong way, and must look whether the budget would be better spent on drugs, and if so we should change the care pathway to more drug spend. It’s about efficiency and effectiveness.

KS: There are different insurances for cancer drugs and for patients. NHS spends similar to Europe but 2.3 times less than other European countries like France, Italy and Switzerland.

Mike Richards, DH cancer czar: We issued information on NHS cancer spending in last December’s cancer reform strategy. It's around £4.5 billion, and less than 20% of that is spent on cancer drugs. The big spend in in-patient and we know there can be big savings there. We also compared total cancer spend: latest UK figures are £80 / head vs. £120 in France and £140 in Germany. On cancer drug expenditure, we are well below average. But we need to point out that the drugs are still expensive and often ineffective. We need to inform patients that many won’t benefit – and be open and honest over cost and, for some drugs, the 1 in 10 chance of benefit.

Final words from the panel

AD: : I agree with Hamish, we need a contextualising debate on how much national wealth to spend on health – there will be a limit. We need a clarifying conversation in the country, at some point we must decide what is offered on the NHS and what is not. It would be very useful for NICE. In context specifically of cancer treatments, we’re behind the pace, but not always due to NICE spend, it’s also about the timing of referral to NICE by pharmaceutical companies. Finally, there are very few practical restrictions in NICE cancer rulings. Cancer is not the only issue - and this is not just about NICE

JW: With a changing demography and ageing population with chronic long-term diseases, cancer is changing from fatal to chronic too. The equity and inequity of NHS access debate won’t go away, we must consider wider issues, and ensure this decision on topping up cancer drugs doesn’t make matters worse for decisions that come later. We mustn’t underestimate the emotional context for the professional sitting in front of the patient.

MG: ignore practical money issue collection at peril. Need to change evaluation of drugs: for rare cancers in rare situations, where cost-effectiveness data is not possible – what will we do then?

KS: This is about weak political leadership, this issue is political, not business / technical or medical, Don’t believe that money won't be an collection issue. No-one mention drug company prices, NICE has tremendous role, but have to get speedy decisions, implemented nationally, exception committees should go and will after the final appeal judgment in the current case.