The missing millions from the NHS waiting list

Five years ago the world felt very different. I walked past playgrounds that had the swings wound up. I had lines on my face from wearing a mask. And every time someone coughed, I would instinctively take a step backwards. Covid-19 was, literally and figuratively, everywhere.

Although the NHS was still open for business, Covid-19 was the clear priority. So if you couldn’t get to see your GP, or you were afraid of coming forward for care because you were worried about being exposed to Covid-19, you were less likely to be referred onto a hospital waiting list.

Over time, there were growing concerns that the NHS would face a ‘bounceback’ – a flood of demand as everyone who would normally have been put on waiting lists during the pandemic started to return to their GPs – causing the NHS waiting list to rapidly balloon.

Five years later, things haven’t quite panned out as I expected. The NHS hospital waiting list has clearly grown. Before Covid-19, there were about 4.5 million pathways on the list (a person can appear on the waiting list multiple times if they need different ‘pathways’ of care for different conditions); it’s now closer to 7.5 million.

But even that number – the highest since modern records began – is slap bang at the lowest level that was projected by a wide range of respected organisations such as the National Audit Office (see Figure 1). Not too long ago, there was a very credible concern that the waiting list now would be closer to 12 million than 7.5 million. And while part of this lower and slower growth in the waiting list is due to the NHS working hard to get through its care backlogs, that is unlikely to fully explain why waiting lists are lower than we might have expected.

So, what happened?

It’s plausible that some of the missing referrals ended in alternative routes. Some health conditions could have resolved by themselves; some people would have decided to ‘live with it’; and others will surely have died before they could be put on the waiting list (although that is a different thing to dying because they were not on a waiting list).

Some patients may have sought out private health care and never made it onto an NHS list. Or they might have accessed NHS care through an emergency route because their condition became so serious that it was no longer treatable as a planned procedure. Or perhaps they benefited from new NHS schemes such as advice and guidance, which aimed to reduce unnecessary referrals for hospital care.

And some people might still be waiting. So perhaps the bounceback is here, but it is just a lower bounce because the rate-limiting factor is still being able to get a GP appointment in the first place.

Perhaps, maybe, could be. The truth is that a few years ago it was thought the NHS waiting list could hit 12 million as all the people who didn’t receive planned care during the long Covid-19 pandemic years came forward for care. That never happened. But that may not be a good thing. And, as a result, there could be a lot of unheralded clinical risk sitting out there.

The government has made tackling hospital waiting lists its main health milestone – it knows how important this measure is for the NHS and for the public. There has been lots of work on administrative validation of waiting lists – to see if people on the waiting list really still need care. There have been patient harm reviews to make sure patients are not seeing their conditions deteriorate. And this summer there have been stories about the ‘frontlog’ on NHS waiting lists, ie, the number of people who have been referred onto hospital waiting lists but are still waiting for their first clinical contact.

In short, there has been lots of government-directed work to make sure people who are already on the hospital waiting list get the care they need. But we – including the government, local NHS organisations, and research organisations like the Fund - should also be thinking more about what happened to all the people who never came back for care. The NHS waiting list might be the highest on record, but it may also be lower than it should be.