Want to know the depth of our NHS crisis? Then talk to disabled people needing day-to-day care

<span>Photograph: Jeff Moore/PA</span>
Photograph: Jeff Moore/PA

When a large earthquake is coming, the ground often shakes beforehand. Geologists believe “foreshocks” can occur months or even decades before the onslaught of an earthquake, the Earth slowly rumbling for some before the rest of us are affected.

It is much the same in politics. The sort of social crises we are currently witnessing in Britain are rightly shocking to much of the public – few more so than the disintegrating NHS. To fall sick and not have the safety net of knowing the health service will be able to take care of you is a deep trauma. And yet it is one that disabled people in this country have long been enduring.

Whether it is the waiting lists for mental health support or the inadequacies of long-Covid clinics, millions of patients with long-term health conditions have been struggling for years to get basic healthcare. The chaotic decline that has befallen acute care in A&E has hit day-to-day services, with effects from delayed consultant appointments and year-long clinic waiting lists to slashed community care.

Mental health bed shortages mean young people need now to have “attempted suicide several times” before they get a place in an inpatient unit in England. Record delays for cancer treatment are leaving patients facing lethal waits. Thousands of people with neurological conditions are waiting up to two years to even see a consultant. For them, the ground has long been shaking. It is just that no one else noticed.

Over the past fortnight, I have spoken to disabled people the length and breadth of Britain about their wait for care. For them, the NHS is not an “in case of emergency” service but the engine they rely on to keep their day-to-day life running.

Before she fell ill, Julie was an NHS nurse herself. The 64-year-old now uses a ventilator 12 hours a day because of a severe breathing condition, on top of an adrenal gland disorder, but she has been left without a local consultant for two and a half years. Julie was finally assigned one last year but hasn’t seen her in 10 months. “My condition is life-limiting,” she says. “I’ve felt abandoned, isolated, and that nobody cares about me.”

For Katherine, 31, it’s surgery that she can’t access for two cysts. Constant infections mean she has been surviving with antibiotics on and off for seven years. On top of it all, Katherine has the pain of fibromyalgia and urinary tract infections (UTIs). Her GP says her local pain clinic has shut down and there are no plans to reopen it. “It feels dramatic to say [but I have been] suicidal. I’ve had times when I haven’t left my bed for a month my health is so bad. It’s frightening.”

Over the course of a year, Chris, 65, who has multiple sclerosis (MS), reported 10 UTIs to her GP and blood in her urine. She was in such discomfort that she couldn’t sleep and lost a stone in weight, but still she wasn’t given a referral. Chris was assigned an MS consultant but went years without being able to see him. Tests never materialised: her MS team booked a scan of her bladder in 2021 but it was cancelled. In May 2022, Chris had a fall at home. While she was in A&E, doctors noticed a mass in her stomach. It turned out to be a tumour in her bladder. “She died at home on 10 June,” her daughter Katie tells me.

This is, by any definition, what you might call an institutional collapse, and one that can be traced directly to a decade of Conservative governments underfunding the NHS. Yet, as much as this comes down to resources, it is too easy to pretend this is solely about cash.

Those of us who rely on the NHS for chronic, more complex conditions are likely to have witnessed the impact of poorly joined-up services, limited research and ableism, alongside great care and skill. Just look at the do-not-resuscitate orders given to disabled people during the height of the pandemic or the controversial Nice guidelines withholding painkillers from some chronic pain patients. Being treated for a heart attack by the NHS is very different from being treated for ME.

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That private healthcare is offered as the solution to any of this – an attitude epitomised by the former health secretary Sajid Javid’s new call to start charging for GP and A&E visits – is particularly invidious for those who need regular care. It is hard enough to find £250 for a one-off appointment but quite another to have to pay consultants, physios and therapists out of your own pocket every few months. That people with pre-existing health conditions are typically ineligible for private insurance only compounds the fact that those most desperate for care are the ones least able to get it. As Katherine, who has now paid £5,000 in private treatments for UTIs, put it to me: “Disabled people have been saying for years the NHS has been broken but no one listened. Now we pay the price.”

The Labour party is in many ways right that the NHS needs “reform” in the face of this (as loaded as that term is), but its recent focus – self-referral to specialists and more use of the private sector – is depressing in its misdirection. When you’re reeling from a Parkinson’s diagnosis, you don’t want to hear politicians talking about reorganisation – just a promise you’ll be able to see your consultant regularly.

For all the complexities at play, the scale of the crisis we are seeing is really about the fundamentals of universal healthcare: that when we fall ill, there need to be enough beds to rest in and enough doctors and nurses to treat us.

It is not a grand ambition, no matter how low expectations have been set, but it is one we are increasingly far from realising. Each time a doctor is pulled off elective care to firefight in A&E this winter, waiting lists for chronic conditions will only grow. The number of long-term sick had ballooned to 2.5 million people by last October, in part owing to lack of NHS care, showing all too clearly where we are heading without a change in direction: towards an ever sicker society where the healthcare system not only fails to help but causes more harm.

Sometimes the collapse of the NHS looks like a patient being declared dead on an A&E waiting room floor. But sometimes it looks like a young woman crying on her sofa in pain. The quiet trembles can be just as shattering.

  • Frances Ryan is a Guardian columnist

  • Some names have been changed

  • In the UK and Ireland, Samaritans can be contacted on 116 123, or email jo@samaritans.org or jo@samaritans.ie. In the US, the National Suicide Prevention Lifeline is 1-800-273-8255. In Australia, the crisis support service Lifeline is 13 11 14. Other international helplines can be found at befrienders.org.