19 June 2008
Ministers have promised a review of the vexed question of top-up treatments. But with those seeking the right to buy extra care at loggerheads with those worried about inequity, what should the NHS do?
As the NHS reaches its sixtieth birthday, it faces a challenge that threatens to both undermine its principles as a body for social justice and its legitimacy with the taxpaying public.
This challenge comes in the form of 'top-up' payments, where patients with terminal or debilitating illnesses pay privately for extra treatments that have not been approved by the National Institute for Health and Clinical Excellence and are not funded by their local primary care trust. When these patients seek to top up their treatment with this often very expensive extra care, they find themselves excluded from the entire NHS system and have to pay all costs themselves.
Until this month, there was an apparent political impasse on the subject. The government seemed to take the view that top-up payments contravened a crucial principle: that the NHS should be available to all, regardless of income, and that top-ups posed a very real risk of creating a two-tier health service.
Meanwhile, a steady trickle of stories in the national media focused on people who had been refused treatment by their local NHS as a result of purchasing top-up treatments. The trickle became a flood in early June, when we read about the death of Linda O'Boyle — a retired former health worker who had been denied free NHS treatment after paying for top-up care. Her death sparked an anti-government editorial in the Sun.
In a climbdown from its previous position, the government has now conceded that the issue does need to be reviewed, doubtless to try to avoid another row with middle England. But what should this review recommend?
What is clear is that the two sides of the debate have almost completely different perspectives. On one side, top-ups are seen as the start of a slippery slope that will lead to the NHS becoming a more or less privatised, hollowed-out remnant of its former self. On the other side, the view is that people should be able to spend their money as they see fit — and if this means privatising the NHS, then so be it.
If the NHS is to maintain its role as a publicly funded body with overwhelming public support it will need to find a way between the two positions to ensure that the most extreme circumstances envisaged by either side do not become reality.
This issue will not go away. More and more expensive cancer drugs are starting to come on stream and with the expansion of asset ownership — most typically through home ownership — more people are able to pay for them.
We need a debate about how to resolve this problem. The highly charged arguments on either side — be they based on dreadfully sad case studies or warnings of a hollowed-out NHS — are powerful reasons for debating the issue.
At present, health service provision varies across the country, and NHS organisations need to be more transparent about the decisions they make. At the same time, there is an opportunity in a more devolved NHS to involve local people and tell them how funding decisions are made.
But no treatment, regardless of who funds it, is guaranteed to work. Indeed, some of the expensive drugs that people are seeking as top-up treatments might work only in a very small number of cases. This is why we have Nice to assess NHS treatments clinically and for cost-effectiveness.
People thinking of spending substantial sums of money on top-up treatments should not be given 'false hope' about treatments that might — or might not — deliver a few extra months or weeks of life, with painful side-effects and a need for regular hospital care.
There is an obligation to make sure that people in such a vulnerable position are supported and have access to all the facts so that they can make the best decision about care at the end of their lives.
We need a balanced discussion about where we go from here. Should we allow top-ups? If we do, how can we mitigate the concerns that they might reduce equity in the health service? Should PCTs group together to draw up a 'negative list' of treatments they will not fund? Should Nice provide a list of treatments for which top-up payments would be allowed? And who pays if there are complications as a result of topping up: what is the equitable solution here?
It is clear from the government's concession of a review, in response to a groundswell of patient and popular opinion, that the status quo is not sustainable. But mainstream voices from the health service and progressive politics need to reclaim the debate from those entrenched at the extreme ends of the argument to ensure that the NHS can meet new challenges in future while maintaining its core values.
Nigel Edwards is policy director at the NHS Confederation. Joe Farrington-Douglas is senior research fellow, public services, at the Institute for Public Policy Research and author of a debate paper, Topping up: should it be allowed in the NHS?
PFjun2008
