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Topping up: Should it be allowed in the NHS?

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by Joe Farrington-Douglas and James Crabtree
NHS Confederation Debate Papers - 17 June 2008

The debate about whether patients should be able to buy additional treatments not offered by the NHS has surfaced again and produces two very polarised points of view. In the press and on the web, opinion seems to be that to prevent people topping up is a violation of both common sense and the rights of the individual to spend money as they wish. The issue is simply one of how to decide where this applies and how to ensure that patients have the right information with which to make the decision. In the political world, topping up is seen as an issue which affects the underlying principles of the NHS. This, it is argued, is a slippery slope to reducing the NHS to a minimum safety net service in which even effective treatments would require a top-up payment.

Polarised arguments
These two arguments start from such different places that they are impossible to compare – they do not have a meeting point where the points of view can be tested. This is a difficult issue and so the NHS Confederation asked Joe Farrington- Douglas and James Crabtree at the Institute for Public Policy Research (IPPR) to share some of its thinking as part of its forthcoming report on the future funding of the NHS, Private spending on healthcare. The material that follows is the IPPR’s analysis of the issue, designed as the starting point for a discussion with NHS organisations and other stakeholders.

Why have top-ups become an issue?
In Private spending on healthcare, the IPPR writes that a number of factors have combined to increase the prominence of top-ups as an issue for the NHS.

New drugs and treatments
A new generation of cutting-edge drugs, particularly for the treatment of cancer, have become – or will soon become – available. These drugs are more likely to be personalised to the individual patient, meaning they are likely to work in more specific cases, but will not be effective for most patients. It is likely that they have the potential to be effective for individuals, extending life by months. However, they are also more expensive than current treatments and these drugs may fail the kind of cost-effectiveness tests that the National Institute for Health and Clinical Excellence (NICE) and commissioners apply. However, individual patients may consider them valuable.

The creation of a more explicit rationing process and the emergence of new, high-cost drugs have coincided with increased availability of information about new treatments and patients’ increased willingness to challenge medical decisions. Information about new treatments is available in the media and on the internet before the drugs are even licensed. This is not always high quality information and concerns have been raised about drug companies marketing new treatments to doctors and patients when their effectiveness is questionable. However, policy-makers should embrace the new world of more informed and demanding patients, particularly since patient empowerment can lead to improved outcomes and engagement in health.

Patients have more access to assets
Some patients have always had the financial capacity to opt out of the NHS and to fund private treatment. However, their capacity to pay for elements of their healthcare has generally increased as asset-holding and access to credit have spread.

More explicit rationing by the NHS
Since the introduction in 1999 of NICE assessments of new and existing treatments, the NHS has become more explicit about the need to prioritise which treatments should and should not be funded.

The NICE process provides a list of what is excluded but, in exceptional cases, PCTs may agree to fund drugs or devices assessed and recommended for exclusion by NICE.
While this type of rationing already existed with treatments like some IVF therapy, osteopathy and scans, where the NHS does not fund all desired treatments more explicit rationing is impacting on patients’ access to treatments.

The combination of these trends – new treatments, more information available, access to assets and explicit rationing – forms a pressure for the top-up issue to be addressed.

Discussion: what do the NHS rules say?
Should NHS patients be able to self-pay for additional treatments – to ‘top up’ their NHS care with additional private treatment? Several high-profile cases where patients have wanted to top up their NHS treatment, but have been refused, have attracted significant media attention and stimulated much debate in the policy world.

Under the current system, patients are not allowed to supplement their treatment by self-paying. NHS rules ensure that patients are prevented from combining private and public healthcare. Department of Health (DH) guidance states: “A patient cannot be both a private and a NHS patient for the treatment of one condition during a single visit to an NHS organisation” (DH, 2003: 10 ). Applying this rule has led to cases where patients who self-fund for treatments that are excluded by the NHS have been denied access to any NHS treatment for that condition.

These rules are currently being challenged by cancer patients who wish to purchase drugs that have not been approved by NICE and who face being denied the rest of their NHS treatment package as a result. Campaigning organisations like Doctors for Reform and public law barrister Nigel Griffin QC have argued that it is unlawful to deny NHS treatment to patients who complement their care by purchasing additional treatments. However, both the Government and PCTs have argued that allowing patients to top up their treatment would undermine the NHS principles of equity.

Problems with the current system
While policy-makers should be cautious about arguments based on ideology or self-interest, there are compelling arguments about new drugs and the need for more sustainable solutions for the treatments awaiting approval and for rejected drugs that patients wish to fund. The numbers of patients affected may be relatively low at present, but trends indicate that these will increase in the future. The current position of the NHS brings a number of concerns to light about which policy-makers should be concerned.

Topping up treatment can affect the NHS care package
Interpreted strictly, the guidance allows NHS providers to deny patients the NHS package of care they need because they have purchased an additional treatment (this has been threatened, for example, by South Tees Hospitals NHS Trust and enforced by Southend University Hospital NHS Foundation Trust. This can be seen as undermining the universalist principle that everyone should have equal access to NHS services according to need.

Current policy is being applied inconsistently
There is evidence of geographical inconsistency, as some patients have won their battle to mix private and public treatment. The credibility of the current strict ruling is further damaged by local PCTs reversing their decisions to refuse to fund a particular treatment following individual campaigns, by citing particular special circumstances.

Other types of top-up already exist
Private and public funding streams for accessing superior drugs and treatments within the NHS are already in operation. Examples include patients paying for private tests to reduce waiting times for NHS surgery, purchasing private prescriptions from NHS GPs for Viagra and infusion pumps or interferon beta for use in NHS treatment.

Inconsistencies could undermine NICE and NHS processes
Faced with a high-profile local campaign and the alternative of denying NHS care to a patient who purchases a non-NICE approved treatment, or providing the additional non-NICE approved treatment for free, PCTs may opt for the latter when decisions are appealed. This has opportunity costs for other patients, and undermines the whole purpose of cost-effectiveness assessments. It also opens up the system to patients with the ‘sharpest elbows’. This situation reflects the fact that the NHS approach to topping up has not changed to reflect the new system of NICE approval and more transparent PCT decision-making.

The IPPR argues that some form of priority-setting or rationing of NHS resources is both necessary and desirable for efficiency and equity reasons. The rules of the NHS should reflect that it offers equitable access to effective promotion of health and provision of healthcare that the public value, within constrained resources and competing priorities.

Not allowing top-ups can reduce efficiency
There is a basis in economic theory for allowing patients to top up publicly funded healthcare. Publicly funded healthcare inevitably sets a limit on the package based on the average value placed on healthcare spending. If individuals value a particular treatment more highly than the median value reflected by the NHS, then allowing them to purchase would improve efficiency.

Risks associated with allowing top-ups
The current status quo raises problems, but there is no simple solution to the problem of access to non-NICE approved drugs. Allowing patients to top up the NHS package raises tough questions, particularly for those who are concerned with equity and solidarity.

Top-ups could threaten NHS equity principles
From a social justice viewpoint, having two patients with similar needs receiving different levels of treatment could be seen as contravening the principles of equity of access embodied in the NHS.

However, if there is going to be explicit rationing – which the ippr argues is necessary from an efficiency and equity point of view – then some patients will inevitably purchase the ‘excluded’ treatments privately. It could be argued that the definition of equity in the NHS relates to access to cost-effective treatments rather than to an unlimited package. It is important to note that allowing top-ups would also mean that more people could access additional treatments than if they had to pay for all their care, but this would not be the policy objective.

Rather than encouraging people to seek private care, the explicit rationing plus top-up solution would enable all patients to access the NHS package of care equitably. Patients who top up their treatment would not be choosing to exit the NHS risk pool into a supplementary system. Indeed, disqualifying them from the right to NHS care could be seen to be harming the NHS principles of universalism and equity of access.

That said, if private care cannot be prevented, there would still be ideological equity concerns about the NHS actively facilitating different levels of care. This could damage the principle of solidarity whereby all citizens enjoy equal entitlements, even if this is not realistic in practice.

Top-ups could lead to ‘a two-tier NHS’
A longer-term concern about this proposed change is that it would be perceived as creating a ‘basic core’ NHS package with a system of co-payments or means-testing for ‘high-quality’ care. Some people who argue for top-ups have such a system in mind.

The IPPR would not wish to see such a system develop. Its report on funding argues for a high-quality universal and equitable healthcare system funded collectively because this is the most efficient way of financing healthcare. The aim of NICE is to ensure that NHS funding is spent most effectively and efficiently, rather than to cut back on healthcare entitlements. The NICE-approved NHS package should expand and improve the quality of care for patients rather than retreat to a ‘basic core’ service. At present, NICE approves more treatments than it rejects, a trend that is expected to continue as NHS funding continues to rise, reflecting the high value that society places on healthcare. However, creating the framework for a ‘free’ and a ‘charged’ level of care could make it easier to go down the route of a two-tier NHS in the future.

Of course, a two-tier system already exists in the UK, with patients who ‘go private’ receiving an enhanced service. There are even two tiers within NHS providers, where private beds are available for paying patients who enjoy shorter waits and possibly enhanced care. Indeed, it could be argued that preventing top-ups makes enhanced private care more expensive.

Allowing top-ups could create false hope
One significant risk of relaxing the rules on purchasing additional, non-NICE approved treatments is that it could encourage patients to spend their savings on expensive treatments that may not be effective. This could even harm patients if it offered them false hope when, in fact, it could only extend their life by a matter of weeks alongside a range of side-effects. Allowing top-ups could feed a worrying trend of medicalising the end-of-life experience for patients with terminal diseases who might suffer and die slowly in hospital rather than spend their last weeks with loved ones at home.

Encouraging drug-related campaigns
Top-ups could provide a greater opportunity for consultants and drug manufacturers to promote new treatments that might not necessarily be in patients’ best interests.

Founding principles: an evolving interpretation
There is some debate about what the ‘founding principles’ of the NHS have to say about private payments for additional treatments. Richards , reporting on the proceedings of an NHS ethics committee that rejected a request to top up treatment, quotes the founding principle of the NHS as being to ensure “the best that science can do is available for the treatment of every citizen at home and in institutions, irrespective of his personal means” (Beveridge, 1942). This quote, however, implies an NHS that did not have to ration treatment. On the other hand, Musgrove argues that the Beveridge vision was that “the duty of the state includes leaving the individual free to provide more protection and more care than that guaranteed by public insurance… not preventing people from rising above [the] minimum”.

This uncertainty about the founding principles reflects that we have never had a theoretically precise definition of ‘equity’ in the NHS. The system has always ‘got by’ with a vague understanding of the values that are shared at the time. As new challenges present themselves, such as highly expensive drugs and technologies and more informed consumers, the interpretation of equity will need to continue to evolve.

Suggested way forward
The problems outlined in this paper are driving the top-up issue up the public agenda. The issues must be discussed now so that policy-makers can resolve them for the future.

The debate is currently polarised between two opposing paradigms. One side, which comes from an individual rights-based standpoint, argues that people have a right to spend their money as they wish as long as it does not hurt anyone, and that threatening to deny them the rest of their NHS care is unfair. On the other hand, the consequentialist viewpoint believes that any blurring of the no top-up rule will lead to a nightmare scenario of charging for high-quality services and reducing the public system to a poor-quality core, reversing the equity principles of the NHS.

We believe that focusing on a specific range of treatments under explicit circumstances would make room for a middle way. In principle, there is a case for allowing those who want to pay for drugs which are marginally effective but which fall outside the cost-effectiveness threshold for the NHS to be allowed to do so. Maintaining would-be private patients within the NHS, this system could enhance the political sustainability of the publicly funded universal health system. However, even a limited relaxation of the rules would need careful managing.

In our report, Private spending on healthcare, we argue that private spending is generally an undesirable way of providing access to most healthcare, for both economic and social justice reasons. It should therefore be a last resort policy solution rather than a preferred way of funding healthcare more generally. Any move towards a free ‘basic core’ and charged ‘high-quality extended’ system or multi-tier NHS should be avoided.

Finally, it is important to note that any changes in this area will not ‘solve’ the healthcare funding challenge. The level of spending from top-ups would be marginal in the context of total healthcare spending.

Moving beyond the political impasse

The IPPR believes the current political impasse is not helpful and ignores the long-term trends outlined earlier in this paper. A review should be established to look at the possibility of relaxing NHS rules for patients who wish to top up their NHS care with specific treatments. Such a review could consider the following options.

Which categories of drugs might be suitable for top-ups?
The IPPR would like to see NICE, as part of its recommendations on a new treatment or guidance on best practice, providing advice on which treatments should be eligible for top-up provision.

Information for patients to make top-up decisions
To ensure that patients have adequate information before they are allowed to purchase additional treatment, they could be required to obtain a second opinion beforehand. Independent information and support in decision making, including patient decision aids, could be made available.

Could top-up charges be introduced for older, cost-ineffective treatments?
As the IPPR has argued before, the role of NICE should be expanded to assess the relative cost-effectiveness of existing treatments. This is part of its remit, but because of limited capacity NICE has tended to focus on assessing new treatments. This would enable the NHS to decide whether to ‘disinvest’ in old, cost-ineffective treatments – an important condition to achieving better value from NHS resources.

Top-ups could help to advance this agenda, with NICE setting out the cost-effective treatment that the NHS should provide, but patients being free to pay a top-up for additional, non-approved treatments. An alternative approach would be for co-payments to be higher for services that have lower value – drawing on the concept of ‘value-based insurance design’ as discussed in the IPPR’s forthcoming report.

Mitigating equity concerns
In order to make sure that the provision of ‘top up’ care does not harm general NHS provision, all additional costs for treatment would have to be met by the private funder, including the treatment of side-effects and complications as well as NHS overheads. Equity concerns could also be mitigated by requiring patients who top up their NHS care to pay an additional ‘equity premium’ that could be redistributed back into the NHS.

Improving public confidence in NICE processes and PCT decision-making
The NICE assessment process needs to carry the trust of the public. It should not exclude treatments that are valued and that taxpayers are willing to fund from the free NHS package, or add to a ‘top up’ package.

PCTs also need to make local commissioning decisions more transparent and accountable, as discussed in the IPPR’s recent report, Great expectations and in the NHS Confederation’s Principles for accountability report. As highlighted earlier in this paper, there are geographical inconsistencies between exception committee decisions about whether patients can receive a non- NICE approved treatment. This could become more visible if some patients receive treatment as a top-up while others are receiving it fully funded, raising questions about the consistency in decision-making criteria.

Moving forward on these issues will be difficult for national politicians. In the current political climate, no party would want to be perceived as threatening the values of the NHS. However, in a more devolved NHS, it may be possible for local NHS trusts and PCTs to engage local populations in debate about topping up and develop their own solutions to the difficult but important questions raised by this emerging issue.

The Futures Debate series is designed to stimulate new thinking on future challenges to the health and social care system, and you can be part of the debate. Have your say now in NHS Confederation’s forum at www.debatepapers.org.uk.