WHY CAN’T THE NHS COMMUNICATE WITH US PROPERLY?
Catherine* had been suffering unexplained gastric problems since November 2024, so was hoping some light would be shed when she was given an appointment for a barium swallow earlier this year. For this examination of the oesophagus, patients are required to avoid food and drink for at least six hours beforehand, and Catherine had duly done so.
But when the 72-year-old arrived for the procedure at an NHS hospital in London, she was told it had been cancelled as it was apparently no longer required. She had not been notified of the cancellation in advance.
“I was pretty livid,” says her son, James*, 35. “My mum was having so many investigations at that point to work out why she couldn’t swallow food, and we still didn’t have any answers. She was getting so thin and frail. The last thing she needed was to drive herself to an appointment only to be told it wasn’t happening.”
Catherine had been the victim of a common problem: the NHS’s failure to communicate properly (or in this case, at all) with patients. Stories like hers are repeated around the country all the time.
Some 200 miles away in Yorkshire, Jane*, 73, was booked in for an NHS endoscopy after some worrying results from an earlier scan. She was notified of the appointment time, but only on the day of the procedure did she receive the official letter containing all the details. It explained that she must not eat after 7am that day. But it did not drop on to her doormat until around midday – five hours too late.
In both cases, hospital staff apologised and agreed the patients should have been notified sooner. Catherine’s family was told steps had been taken to ensure it wouldn’t happen again.
But such failings are still happening. Sometimes they verge on the farcical. Like when Beatrice*, 43, tried to cancel a maxillofacial appointment at a north London hospital this year by replying appropriately to a text message notification about it to say she no longer needed it. Instead of registering the cancellation, the hospital sent her a succession of letters telling her she had failed to show up, and rebooking her multiple times, despite her consistently telling them no appointment was required. (She had previously given up waiting, gone private and received an all-clear.)
“It felt like it was impossible to get the message through,” she says. “And each slot they unnecessarily gave me could have gone to someone else on the waiting list. Each time I didn’t show up for these appointments that I had tried in vain to cancel, it would have cost them money and time, which the NHS can hardly afford.”
A quarter of the public believe the NHS is poor at communicating with patients about matters such as appointments and test results, according to a report published in February by The King’s Fund, Healthwatch England and National Voices. Of those who had used the NHS in the previous 12 months, either for themselves or someone they cared for, almost two thirds (64 per cent) said they had experienced at least one issue with NHS admin or poor communication.
Almost a third (32 per cent) of patients said they had had to chase results following a test, scan or X-ray – the same proportion who said they had not been kept updated on how long they had to wait for treatment or care.
Perhaps most maddening of all, a fifth of patients had received an invitation to an appointment after the date had passed.
One patient with multiple long-term conditions told researchers about an occasion when it had taken her more than an hour just to cancel a single appointment, which could not be done on the NHS app and required a lot of time spent phoning and trying to get through to someone who was able to help.
A woman called Sharon, who also had multiple conditions, recounted a similar experience when trying to confirm an appointment after she was asked to do so. She had been given no number to call to check what the appointment was for, and it had not been specified on the invitation. She told of spending hours being bounced around different departments, just to find out what appointment she was being asked to confirm.
Another patient received a text confirming the date of their appointment – for the 99th of January.
Not only are texts like these of questionable value to patients, but NHS England has acknowledged that SMS messaging can also be vulnerable to interception and spoofing.
And so it goes on, with a wellspring of anecdotal evidence spanning everything from appointments that are cancelled after the patient has arrived at the hospital, to patients being marked as DNA (“did not attend”) and wrongly discharged after having tried in vain to cancel auto-generated outpatient appointments.
“So many people we were speaking to had a story about some form of their admin process going wrong, whether that was [appointment] letters being sent after appointments, phone numbers they were given that didn’t go through to anywhere, test results going missing or late-notice appointments,” says Dan Wellings, a senior fellow at healthcare charity The King’s Fund and co-author of the report.
One person, he says, received three letters in the same envelope: one booking an appointment, one cancelling it, and one rescheduling it. The rescheduled appointment was for a date that had passed before the letter had even been sent.
“Everyone seemed to have a story about this, but the NHS didn’t seem to be paying attention to it as a significant issue,” says Wellings. “There was little understanding of the extent to which this is happening.”
It seems clear that the system is broken. The question is why, and how can it be fixed?
One fundamental issue, says Wellings, is that the NHS is “nowhere near good enough at listening to those it serves”.
On a practical level, a joined-up approach is lacking, with too little clarity over who is responsible for the problem. “Is it a communications question, a clinical question, a patient experience question?” asks Wellings. “It’s fallen between those different areas.”
Insufficient resources are part of it. Wellings suggests there is also a lack of importance attached to getting communications right, despite how crucial it is. “Admin staff we spoke to often feel they’re not valued,” he says.
When NHS trusts are looking to make job cuts, admin roles can be among the first to be targeted, he adds. This is a false economy, because failing to operate smoothly is more costly in the long run.
More than two million people may have missed medical appointments in 2022-23 due to late delivery of letters, executives from Healthwatch England, NHS Providers, the Patients Association and National Voices told The Telegraph in a letter in April 2024. This amounted to a quarter of missed hospital appointments annually.
Delays in the postal system are a factor in some – but by no means all – of these cases. Behind others is a vast, complex and often unco-ordinated organisation in which different trusts work in different ways, with different IT systems.
In the past 30 years, many governments have come and gone, even more health secretaries, and a fair few health bodies – NHS England, NHS Improvement, the Care Quality Commission, and so on.
“All those health secretaries and organisations have made decision after decision, shift after shift, often without considering what’s come before,” says Clare Wade, a director of the charity Patient Safety Learning. “We find ourselves in a place where not everything’s been done well. What you find is a system that’s creaking. It has large areas that don’t work properly, don’t function properly. A lot of it is systemic.”
While the vast majority of those working in the NHS are doing their best to ensure patients are cared for, “they’re working with such complexity and difference”, according to Wade. “Every trust has a different way of working. Some have electronic systems, some don’t. Some are half and half. So there you have alignments of communications that fail,” she says.
This inconsistency can include a lack of connection between primary care providers and hospitals, or between providers of different health services, which is a particular concern for those with multiple conditions.
Add to this the fact that, as Wade says, some services are running “on a skeleton staff, so if anyone goes off sick it can have a real impact”, and you begin to see how many potential cracks there are in the system, between which that crucial hospital letter can sometimes just seem to vanish.
Frustrated and anxious patients are just one outcome of these communication failures. The Lost in the System report found patients and carers suffering from stress and deteriorating mental health as a result of poor admin. Perhaps more worrying still was that four in 10 said poor admin meant they were less likely to seek care in future.
The report also warned that it fuels a perception of NHS profligacy. Of those who had experienced at least one problem with NHS admin over the previous year, 61 per cent said it made them think money was being wasted.
This is not an unreasonable assumption. Missed appointments are estimated to cost the NHS some £1.2bn a year. If a quarter of these DNAs are a result of late-arriving letters, that figure could in theory be cut by £300m.
At an individual level, patients are not the only ones affected. GPs spend a great deal of time “chasing after bits of information for patients”, says Prof Kamila Hawthorne, the chairman of the Royal College of General Practitioners and a GP in South Wales. “We go looking for a piece of information and we can’t find it.”
The process is “clunky”, she says, and involves “a variety of [computer] systems that don’t speak to each other well”.
If a blood test is carried out in hospital, for instance, the result goes back to the hospital and the GP does not immediately receive it. “We have ways of logging in to parts of the hospital system,” says Prof Hawthorne, “but it’s not seamless; it takes time and you’ve got to know your way in and out of the maze. It’s the same with pathology results, letters – you have to log in and search. That’s time-consuming, and every so often something goes missing completely.”
At the same time, if a GP makes a referral and the weeks pass but the patient hears nothing from the hospital, this can also add to the workload of the referring doctor, who will have to chase it up.
“It takes time, because someone has to get on the blower, talk to someone at the hospital, find the right department,” says Prof Hawthorne. “Sometimes you’re on the phone for ages, waiting for someone to pick up. We understand patients’ frustration – we have it too.”
While letters do appear “most of the time”, she agrees that communications are “bad”, and that “in the 21st century, [they should be] much better”.
Yet, in the 21st century – as recently as 2018 – it transpired that the NHS was still, incomprehensibly, buying more fax machines than any other organisation in the world, because of what the Royal College of Surgeons called a “stubborn” resistance to new technology. At this point, at least 9,000 of the machines last popular in the 1980s were still in service across the health service, with doctors using them to send crucial patient information.
Matt Hancock, the Conservative former health secretary, banned the NHS from buying new fax machines that year, and ordered that they be phased out completely by April 2020. It is understood that some remain in use today.
No one disputes the need for reform, but when the NHS has tried to update its systems over the years, the results have been mixed. In 2011 a £12.7bn IT system, designed to give every patient an electronic health record that could be easily shared across the health service, was scrapped less than a decade after its creation. The Public Accounts Committee described the failed computer upgrade as among the “worst and most expensive contracting fiascos” in the history of the public sector.
More successful, so far, has been the rollout of the NHS app, through which patients can manage appointments, view prescriptions, access their GP health record and receive notifications. In April the Government said its accelerated rollout of the app – “which helps patients access treatment more conveniently so that it fits around their lives, rather than the other way round” – had prevented 1.5 million hospital appointments from being missed, saving 5.7 million staff hours since July 2024.
The vast majority (87 per cent) of hospitals were allowing patients to view appointment information on the app by the end of March this year, up from 68 per cent the previous July.
Yet it’s not hard to find people tearing their hair out over it online.
“I have spent hours – days, in fact – over the last couple of years on several attempts with the tech team to get it working for me, and all have failed,” wrote a Mumsnet user earlier this year. “It simply does not recognise me.”
A Gransnet user said she found it “very hit and miss as to what is recorded and what isn’t”. Posting in September, she wrote: “Messages don’t always show there… Worryingly, mine’s currently showing two serious health conditions that are obviously from someone else’s records and I am trying to get them removed – apparently I have to discuss this with a doctor before it can be done.”
As is often the case with new technology, not everyone will find the process of using it straightforward.
“The app does seem to be starting to make a difference to people,” says Wellings. “But there are still challenges around it, and the NHS needs to check in with users that it’s working. We also know there’s an issue around digital exclusion: large parts of the population who, whether because of technology or language issues, still aren’t comfortable with digital services, and that will be particularly pronounced in those who use health services more.”
The older you are, the more long-term conditions youm are likely to have. But Age UK warned in July that almost one in five older people have limited use of the internet and are at risk of being left behind by an increasingly digital world. For some of those unaccustomed to using smartphone apps, the NHS one may prove more of a challenge to them than an aid.
Wellings would like to see the NHS become “far better at listening to those it serves”, though he notes that the Government has now at least recognised the problem of poor admin and is “starting to address this in a more meaningful way”.
In July, Labour set out its 10-year health plan for England. Among the reforms outlined was one allowing patients to book appointments, communicate with professionals, receive advice, draft or view their care plan and self-refer to local tests and services, all via the NHS app.
Prof Hawthorne, meanwhile, wishes NHS communications could be as efficient as those that consumers receive when shopping online.
“As soon as you buy something, you get a message to tell you it’s been ordered and then another saying it’s on its way. I don’t see why we can’t do that in the NHS,” she says. “We need a kind of Amazon[-style service].”
When things do go wrong, the NHS must be better at learning from it to prevent it recurring, says Wade. The problem, she warns, is that admin failures have become so commonplace, they often go unreported.
“Where things are normalised, no one’s even thinking of learning from them,” she says. A “mindset and culture change” is required to address these “business as usual” issues, she argues. At the moment, when an admin failure occurs, “the majority of staff in the NHS just don’t have that headspace to think, ‘This wasn’t OK and what are we going to do about it?’”
The NHS has previously pointed to the “long-term capital starvation” it has faced, with “too many organisations still struggling with outdated tech and data systems to support effective patient administration”.
While front-line digitisation and the app are helping to address this, there is an awareness that the health service must go farther to ensure patients receive the information they need in a timely way.
An NHS spokesman says: “We recognise patients’ frustrations with delays with appointment letters and test results, and we are committed to improving communications with patients wherever we can – including working with the Royal Mail to introduce a new barcode system to prioritise NHS post. We are also investing £1.9bn in digital infrastructure, with the vast majority of hospitals now having new or improved electronic patient records systems in place.”
The Department of Health and Social Care says it is bringing together a single patient record, giving greater control to patients so that they “spend less time in the dark” and more time receiving the care they need.
“Clear, reliable communication is not a luxury,” says a spokesman. “It’s essential to good patient care, and we are committed to tackling these longstanding issues so patients get the info they need in the format that works best for them.”
Only, it seems, by dragging communications fully into the present day can the Government’s stated aim for a health service fit for the future stand a chance.
*Names have been changed.
2025-11-13T06:05:54Z
