The NHS - We Need to Talk

Last week I found myself facing a daunting task - telling an audience of NHS communicators just how bad the NHS is at communicating. Fortunately the NHS Communicate conference where I was being interviewed by Channel 4 News Health Editor Victoria Macdonald was held online, so if there was any booing I did not hear it.

In fact, as I outlined my experiences as a journalist and, more importantly, as a patient interacting with the NHS, I sensed from the questions popping up in the chat box that my message was anything but controversial. I took the audience through my experience last October when a horrible fall left me with a broken elbow, and somehow I was sent home from hospital with no record that I had suffered an open fracture and therefore needed antibiotics.

That communication failure was followed by a series of others, both with me, the patient, and between medical professionals. The hospital trust has responded by opening what they describe as a “comprehensive” review of my care, which I am told is nearing completion. I wonder however if such an investigation would have taken place if I were not a pushy journalist able to make a fuss.

After I wrote about my experience, dozens of people got in touch with similar stories. When I tweeted about the conference, Yaz messaged me to tell me what happened to her father, who is “70 years old, deaf in one ear and struggles with the English language.” Last year, when he was due to have a colonoscopy his wife phoned to make an appointment and when she made clear his circumstances was told that she would have to be present on the day of the procedure to translate for her husband.

When the day came, Yaz’s mother was told again that as soon as her husband was out of theatre she would be called to translate and communicate with the doctor. But she then endured that NHS experience so familiar to many, waiting around for hours, moved from place to place, asking nurses for information without success. When her husband finally emerged, he had no comprehension of what had happened and what he had been told and his wife was told nothing.

For weeks, Yaz and her family tried and failed to get more information from the hospital and the GP.“Being in hospital at your most vulnerable is scary for many,” Yaz told me. “But to be denied the ability to clearly comprehend is a form of cruelty my father should not have encountered.” Her father, she says, is in constant pain but has given up on trying to talk to the health service about what is happening. And she says that’s not unusual:

“Many men my father’s age from our community refuse to engage with the NHS for many reasons, primarily fear and frustration at not being listened to.”

But you don’t have to have language barriers to experience problems with communicating with the health service. “Andrew” - not his real name - is an executive who has worked for major international companies. But when his elderly mother went into hospital after falling and breaking her hip, he found himself powerless to ensure she got good care. He tells her story in a video he has sent to the hospital trust outlining his complaint and which he has let me see::

“Before my mum entered your care,” he tells them, “she could shop for herself, she could cook for herself and on a good day, finished the easy crossword in The Times.” That, he says, is no longer the case. She was released from the hospital into rehabilitation with bedsores so bad that she had to be sent straight back, with the GP examining her for admission saying  “she could smell the flesh rotting.” 

She then spent nine weeks back in the hospital, with Andrew alleging that despite the fact that he repeated his concerns about his mother’s bedsores time and again, both in writing and in person on the ward, he was told there was nothing to worry about - only to find that no doctor had examined her. After two investigations, he says,  the true extent of the failure of individual doctors of medical teams and processes became apparent -  “nothing less than a total failure of care.”

Andrew tells this story with the fluency of a skilled communicator but also with an anger he can barely contain: “Y​​ou took an elderly lady who was still living her best life at home and you broke her.”

In all of these cases it appears to me that what shines through is what an old-fashioned organisation the National Health Service remains, for all of its merits. The days when Matron or Doctor knew best are supposed to be long gone but some of that attitude remains, with patients and their relatives seeking information too often treated as an annoyance. And communication between health professionals is hampered by hierarchies - you have to be a brave junior doctor to suggest the consultant may have missed something, an even braver nurse to dare to badger busy doctors on a patient’s behalf.

But if the NHS needs a culture change when it comes to communication, we as patients and citizens also need to do our part. We need to stop sentimentalising a perfect health service which never existed and become critical friends, supportive of the great work we see from so many medical staff but not afraid to speak up when things go wrong.

We need to stop making impossible demands, for instance that the health service becomes better at sharing information to improve treatment while having gold standard security and always asking permission from patients every time their data is passed from one hospital to another. The result has been that staff have been terrified of releasing data, even when patients have given their explicit permission for it to be shared.

And we need to stop being so purist about private sector involvement in the NHS. The important principle is that care should be free at the point of delivery, not that all of those delivering it or working to improve the service should be employed by the NHS. If you believe, as I do, that better technology will be vital in building a sustainable health service, then we will have to engage with tech giants such as Google or the two tech startups we met in the recent episode of Movers and Shakers. And yes, we will have to accept that they will want to make a profit.

This feels like a moment of crisis for the relationship between patients and the NHS. But it is also an opportunity to have a frank conversation because we have a common cause  - improving treatment and outcomes for everyone.