Waiting matters: bringing down NHS waiting lists is important but so is the experience of waiting

Margot Kuylen and Dan Wellings consider the results of the Health Insight Survey and finds that while waiting times have improved, for many the experience of waiting hasn’t.

Sometimes we must be open to holding two ideas at once: that genuine progress has been made, and that there is still a lot more work to do. We must welcome good news while acknowledging that the full picture may be more complex. 

Elective care waiting lists are a good case study. The latest data for March 2026 shows that the waiting list has fallen to 7.1 million – its lowest level since November 2022. In addition, the NHS met its interim target that at least 65% of patients on the list have been waiting for less than 18 weeks since their referral. Performance in March reached 65.3%, the highest figure recorded since November 2021. There is no doubt this is a significant milestone – albeit still well short of the longer-term goal, which is to hit 92%. 

However, the latest Health Insight Survey results, published on 21 May, show that uncertainty and poor communication still define the experience of waiting for NHS care for too many of us. The survey, conducted by the Office of National Statistics, measures – among other things – the experience people are having on NHS waiting lists.  

The results of this survey reveal the reality of how large numbers of people feel while waiting for treatment, but it also shows what could be done to improve that experience.  When asked how they would rate their overall experience of waiting for their hospital appointment, nearly half (46%) of respondents said it was poor. Crucially, this doesn’t just reflect dissatisfaction with the length of the wait. When asked in a separate question whether they were dissatisfied with the communication about their wait, a similar proportion (44%) of respondents said they were dissatisfied (a further 29% said they were neither satisfied nor dissatisfied and only 27% said they were satisfied).

Many patients feel left in the dark about what’s happening. For example, 2 out of 3 (66%) said they did not know when to expect their appointment or treatment. 

When asked what information they have received while on a waiting list nearly half of respondents (45%) said they had not received any information after their referral. This means many people are not even receiving confirmation of their referral – arguably the bare minimum level of communication and reassurance people deserve.  

People, of course, want shorter waits. But they also want better communication and certainty while they are waiting. When asked what could improve their experience, shorter waiting times were the most popular response (59%), consistent with policy priorities – but this was very closely followed by ‘more regular updates about wait’ (50%) and ‘confirmation of place on waiting list’ (42%).  

We all know that waiting for something can be hard enough – waiting with uncertainty is even worse.

Not knowing what is going on can cause anxiety, and this is compounded in a health care setting because of the importance of what you are waiting for. The results of this survey contribute to an ever-growing body of evidence that shows the NHS is getting many of the basics wrong when it comes to communicating with those it serves.  

The King’s Fund’s recent work in partnership with Healthwatch England and National Voices found that two thirds (66%) of patients and carers who used NHS services in the past year had experienced at least one administrative problem, including not being kept updated and having to chase test results. Healthwatch research published in December last year revealed that one in seven patients (14%) have been stuck between their GP and hospital teams, often due to delays in the referral being sent, or the referral being lost, rejected or never sent. No wonder, then, that the public is increasingly concerned about this: the percentage of the public who said the NHS was good at keeping people informed about what is happening with their care and treatment fell from 42% in 2024 to 32% in 2025. 

The poor experiences of patients who are on waiting lists also raises wider concerns about patients who are being removed from them. Someone may be taken off the list after clinician review, after being asked whether they still require care or after not attending appointments. When done well, these processes can benefit patients as well as the system: for example, clinician review can help redirect people to a more appropriate service. But in all cases, clear communication with the patient is vital. What happens if that goes wrong? What if a clinician removes a patient from the waiting list but the patient never receives the letter? What if a patient misses a text asking whether they still require care? What if someone is discharged after not attending an appointment they never realised was made?  

National NHS guidance rightly mandates appropriate communication and follow-up when patients are removed from a waiting list. The question is how consistently and effectively such processes are being implemented. At present, we do not have data to assess these worries. But the stakes are very high: improper removal would risk disadvantaging patients, particularly those who are less able to navigate the system – and ultimately the system itself, if care gets shifted to other parts of the system or delayed.  

Not enough is being done to monitor and address these issues. The elective reform plan, published in January 2025, promised more timely confirmation to patients that specialists have received GP referrals, and clear communications throughout patients’ time on waiting lists – but the survey data shows issues persist. NHS England and the Department of Health and Social Care have been working on new minimum patient experience standards for elective care, but the work is way behind its original deadline of September 2025. And we do not have data in the public domain on how the impact of waiting list removal is being monitored and assessed.  

Bringing down waiting times is key – but how we wait matters, too, and the data we do have suggests we are a long way from getting this right.