Yes, the NHS is overstretched and underfunded – but when did it become quite so uncaring?

Under pressure from staff strikes and ballooning waiting lists, the NHS has started treating its patients as an inconvenience, says James Moore. For those with long-term health conditions, this endemic lack of compassion adds to the misery of accessing treatment

I’ve seen for myself the NHS’s communication failures up close as well as failures in basic standards of care (PA)

Walking down a poorly lit street in heavy rain, Rory Cellan-Jones, the BBC’s former tech guru who has Parkinson’s disease, tripped on a branch dislodged by the recent storms. He crashed to the pavement. With blood pouring from him, he made his way to A&E. That was when his nightmare began.

There were hours stuck on a trolley, anxiety-inducing waits for a call about a badly fractured elbow and a surgery nightmare, going through nil-by-mouth only for his op to be cancelled, occupying a bed for hours on end, to no apparent purpose.

“Getting information about one’s treatment seems like an obstacle race where the system is always one step ahead,” Cellan-Jones said. “But communication between medical staff within and between hospitals also appears hopelessly inadequate, with the gulf between doctors and nurses particularly acute.”

I’ve seen for myself the NHS’s communication failures up close as well as failures in basic standards of care – but sometimes also of compassion.

In the summer, my autoimmune condition (type 1 diabetes) threw a curveball as my blood sugars suddenly shot up in the heat. On a new regime, with a sensor attached to my arm and new insulin, I sought advice from the clinic at Whipps Cross Hospital in east London, as I was told I should do.

Trouble is, I attempted to get in touch via email, and that apparently was the wrong thing to do. A promised call-back failed to materialise while I was also grappling with a hopelessly complicated admissions procedure at another hospital, the Royal National Orthopaedic Hospital in Middlesex, where I had been scheduled for treatment of the lingering effects of having been run over by a truck.

I’ve spent the last decade dealing with this sort of thing – managing multiple clinics, seeing appointments made and cancelled, wasting hours on the phone, writing emails and letters, and then waiting and worrying about all of the above – and I have one thing to say to Cellan-Jones: the stress of dealing with the NHS can break you.

Fear has been another constant companion for me since the cycling accident that damn near killed me. It eats away at you. It is motivated, in my case, less by the medical condition(s) I have to deal with, and a body that no longer works as it used to, than by the challenge of dealing with an increasingly cold and unfeeling NHS should I have to call upon it. Because it is getting worse.

The problem has always been there. Years ago, I was in an appointment with a chiropodist – another service you now have to pay for privately to stand a chance of getting seen – when a phone rang. And rang. And rang.

Finally, she said: “Sorry, give me a moment, I have to answer that.”

When she returned, she was furious: “I keep saying to people, we have to answer these phones. Honestly, I don’t know who the NHS is run for, but it’s certainly not the patients.”

No, it isn’t. And this was also before Covid, austerity and the latest recruitment crisis.

I can mostly manage my issues. Post-accident, I was working again a matter of months after my family was warned to expect me to face up to a year in hospital. I’ve had to deal with my diabetes for years, with almost none of the specialist input you are supposed to receive, just a couple of very good GPs whom I trust. I like to just get on with things.

But appointments at my GP surgery are so hard to come by, and when you’re negotiating new prescriptions and new tech as well as your illnesses, things can rapidly snowball. What you really need is a bit of compassion.

When I fire off letters about the lack of care I receive, that’s when things get interesting.

The letter I received back from the Royal National Orthopaedic Hospital told me that the institution had listened. Crucially, I was offered a conversation with a manager, who heard me out and seemed to take on board what I said. I came away feeling reassured and, better still, that there was still some room for understanding and compassion in the service. It is still possible.

Just been to the dentist and learned that fixing my smile will take 6 months and cost ££££. Don’t fall over - it’s an expensive business! pic.twitter.com/jjFyNu9xHv

— Rory Cellan-Jones (@ruskin147) November 3, 2023

The contrast with Whipps Cross, part of the Barts Health NHS Trust, however, could hardly have been more stark. It is a hospital with which I have had a long and unhappy history. I was left for several hours in shattering pain upon being transferred there in the wake of my accident; on another occasion, a nurse berated me for pressing the call button because I was in agony and needed morphine.

The Whipps Cross letter read like a polite “get lost”. You should have used our special phoneline, which isn’t on the website, and don’t use our “non-urgent” email. Follow-up emails were ignored. As for returning my phone calls? Don’t make me laugh.

For the record, the Trust responsible for Whipps Cross sent me a statement: “We investigated Mr Moore’s complaints, and apologised to him for mistakes that we made in his care, some of which were amplified by the Covid pandemic. We’re always seeking to provide patients with a better experience, and this sort of feedback helps improve both our services and our communication.”

Someone like Rory Cellan-Jones, as he embarks on the tough road along which I’ve been travelling for years, should not have to contend with fear. He, and the hundreds of thousands of patients like him, should be able to have confidence they will be safe in the NHS’s hands.

They should not have to develop new advocacy skills – namely, how best to write letters of complaint, or how best to navigate a complex bureaucracy in which no one takes responsibility for anything and, as a result, your care suffers.

This is not what we pay for – although we do all pay for the NHS. It is, however, fixable. The communication breakdowns, the lack of compassion sometimes shown to patients, these are not issues of resource, although money is still a pressing issue for the service.

It will take some political will, including trading ideology and the pursuit of headlines for pragmatism and workable solutions. But it will also take an effort of will from the NHS itself.

The service needs to heed the chiropodist I saw all those years ago and to understand why she, a caring and committed individual, found working in it so frustrating. Honeyed words about putting the patient first need to be transformed into deeds. Right now, too many of us are treated as an inconvenience. We all deserve better.