How many people died while on waiting lists?

NHS waiting lists: estimated 340,000 died awaiting treatment in 2022

121,000 patients died while on NHS waiting lists last year

Two different pieces of research published in last Thursday’s newspapers gave very different estimates for the number of people dying while on NHS waiting lists in England last year.

An estimate based on Freedom of Information requests (FOIs) by the Times suggested it was about 340,000, a figure that was repeated in a leader column.

While research by the Labour party, also based on FOIs and reported by the Guardian, Telegraph, Mail, Mirror and others, suggested it was more like 121,000.

Full Fact has asked both the Times and Labour for more information about their research, but neither has responded.

Clearly both these figures cannot be correct, unless they are describing different things in a way they have not explained. Based on what we know, there are several reasons why they may not be reliable.

Politicians and the media should provide evidence for their claims, so the public can check that what they’re saying is accurate.

Where these numbers come from

Labour and the Times produced their estimates using similar methods. Both submitted FOIs to NHS trusts in England, asking for the number of people who died while on waiting lists.

Describing its methods in a press release, Labour said: “Results from a freedom of information request by the Labour party to every NHS trust in England [...] received 35 responses out of 138 acute trusts.

“The total number of deaths from those who responded was 30,611 deaths, which when extrapolated out to all trusts would be 120,695 deaths.”

The Times said in its article: “The Times received responses to information requests from 83 of 223 trusts, who reported 125,000 waiting list deaths. The figure of 340,000 comes from extrapolating the figure to all NHS trusts. The number dying on waiting lists jumped 15 per cent at the start of the pandemic in 2020, and carried on rising in 2021 and last year.”

So in simple terms, both Labour and the Times asked for the information directly from England’s NHS trusts. Labour only asked acute trusts, also known as hospital trusts. Whereas it seems that the Times asked all trusts, which would also include those providing mental health, community healthcare, specialist and ambulance services.

The total number of trusts changes frequently. The NHS said there were 229 on its 75th anniversary in July. The King’s Fund said there were 215 in 2022. But a figure of 223 has been claimed in the past.

Most trusts did not reply to these requests, so both Labour and the Times extrapolated from the numbers they received to estimate what the total would be if they’d heard from everyone. This effectively assumes that each of the missing trusts would have reported the average number of deaths that were given by the others.

Is this reliable?    

Extrapolating from a sample can be a good way to estimate the big picture. A similar method is used in opinion polls, for example. However, it is very important that the sample should be representative of the group as a whole.

In this case, we don’t know how well the trusts who replied represented the mix of trusts in general. Some trusts are much larger than others. Some may experience more deaths, or have longer waiting lists.

It is therefore possible that the trusts who replied to Labour and the Times gave larger or smaller than average numbers, which would then make the total extrapolated from them too large or small.

This could be mitigated to some extent by ‘weighting’ the numbers, for instance according to how large or small the trusts are. Neither the Times nor Labour seem to have done this.

The calculations they supplied simply show the total number of reported deaths scaled up to reflect the total number of trusts they asked.

Neither the Times nor the Labour party has answered our questions about this.

There’s more we don’t know

It is also important to know exactly what the Times and Labour asked for, and how the trusts interpreted it in their responses.

For instance, the main Referral to Treatment (RTT) waiting list counts “incomplete pathways”, not people.

A pathway is an instance of someone being referred for treatment, and it is incomplete while they are still waiting for it. But some people are referred for more than one condition, which means they will appear more than once on the list.

NHS England does not publish specific data on the number of people on the waiting list, but Sir Jim Mackey, chief executive of NHS Improvement, said last year that the RTT waiting list of about seven million pathways at the time included about 5.5 million people.

We don’t know whether this issue has been accounted for in the data that Labour and the Times obtained. Trusts may have responded with the number of pathways where someone died, in which case they may have counted some people twice. Indeed this might have been hard to avoid in cases where someone appeared on the waiting list for more than one trust.

We also don’t know whether Labour or the Times were specific about what they meant by a waiting list, because there are others besides the RTT—including for cancer treatment, diagnostics and transplants. It’s possible that the trusts responded with the number of people who died while waiting for any NHS service, rather than just those on the RTT list.

It’s also possible that trusts interpreted these questions differently and used a mixture of these methods in their responses.

Are the numbers plausible?

Millions of people are on NHS waiting lists in England, so sadly the chances are that some will die in any given year.

Last year, 540,333 deaths were registered in England, which has a total population (based on a mid-2021 estimate) of 56,536,000. That means that roughly 1% of the population was registered to have died last year.

If we crudely assume that roughly 5.5 million people were on the waiting list at any given time last year (although the number of incomplete pathways rose from about 6.1 million to 7.2 million during 2022), and their risk of death was the same as the English average, then you’d expect about 55,000 of them to die.

However, we know that older people are more likely to receive elective care. And given that they are waiting for treatment, it seems likely that people on the waiting list also have worse than average health.

This means that people on the waiting list probably have a higher than average risk of dying, which suggests that you’d expect the total to be more than 55,000—but how much more is uncertain. 

Charles Tallack of the Health Foundation has used a simple estimate on X (formerly Twitter), which suggests that Labour’s 121,000 figure is roughly in line with expectations based on the RTT data, although we have not assessed this estimate ourselves.

And if you include all NHS waiting lists, not just the RTT, the estimated total would rise further.

In short, we can find no obvious reason to think that the figures from Labour or the Times are wrong. But given what we know—which isn’t everything we need to know—there are some reasons to doubt that they were calculated in a reliable way.