Patients aren’t too stupid to know when to get help. As a carer, I know what they’re really avoiding

Top NHS leaders have launched a campaign to urge people to seek urgent medical care for conditions other than Covid-19, after visits to A&E (including those with problems as serious as heart attacks) fell to only about half those in April 2019. .

NHS England chief executive, Simon Stevens, told us that “patients who don’t have Covid-19 can safely access essential services.” He warned, “Ignoring problems can have serious consequences – now or in the future.” Once again during the pandemic, the public was blamed for getting it wrong.

Patients and families are used to being told off like naughty children by those in charge of the NHS. Just a few months ago, it was for the opposite reason – we were said to be over-using emergency services and so putting lives at risk.

Of course, all of us ought to try to act responsibly and it can be annoying when we see people risking their health and ours, not to mention the embarrassment if we ourselves blunder. But it has been pointed out that, during the pandemic and in general, those in power have often tried to direct attention away from their own failings by focusing on what the rest of us have done wrong.

If those in leadership roles really want to encourage us to seek treatment when we need it, they could consider whether the people who tend to use the NHS most may face obstacles other than being foolish and ignorant.

I have been a carer for decades (now also disabled) and have seen the effects of “efficiency savings” and austerity, despite the often heroic efforts of frontline staff and some managers to keep services afloat. Hardship has usually been greatest for those facing other kinds of disadvantage and discrimination.

There has been an outpouring of sombre studies and grim reports. Health and social care cuts led to an estimated 120,000 extra deaths in England from 2010-17, mainly among the over-60s and care home residents, according to research published in BMJ Open.

As the number of older people grew, central government slashed funding to English local authorities by nearly 50 per cent between 2010 and 2019. Though councils tried to cushion the effect on the most vital services, by late last year around 1.5 million older people were reckoned to have an unmet need for social care such as help in getting out of bed and going to the toilet, let alone support to take part in community life, the everyday activities which others now feel so frustrated about being denied for even a few weeks. Unsurprisingly, those who survived did not all feel confident that their concerns were central to politicians and power-brokers.

Humiliating assessments, conditions and sanctions for people of working age who received social security payments added to the sense of being devalued or even targeted. People with mental health issues are among those affected.

Then came the rapid spread of Covid-19. That people in general have been hesitant to use healthcare facilities, at a time when we have been warned about hanging around anywhere for even a few minutes and staff left without proper personal protective equipment (PPE) or virus testing, is unsurprising. We may also not want to burden an overloaded NHS.

Some of the health-related services which would have been sought are closed or running at lower levels, while activities to keep people physically and mentally healthy have become that much harder. For instance, I can still go for walks fairly safely, scuttling out of the way of passers-by when required, but many others with arthritis cannot. Extra challenges exist for those without smartphones or those not adept at video-conferencing.

In addition, worrying (though perhaps predictable) signals have been sent out about who might be first to be thrown overboard if the balloon might be at risk of sinking, which may put people off from seeking care. In case intensive care units for Covid-19 patients were full, a set of criteria were announced for deciding who might be left to die, such as over-65s with social care needs. After protests, it was agreed that people with learning disabilities or autism would be individually assessed. But disabled campaigners are still taking legal action.

In some cases, there was a rush to sign disabled people up for “do not attempt resuscitation” notices, sometimes conflated with not going to hospital if ill, sometimes including children and people with learning disabilities. While people should not be pressured into treatment they do not want, the impression was given that some were expendable.

PPE shortages in care homes, combined with sending infected patients to these places where social distancing was near-impossible, have had horrific results. Meanwhile, social care in community settings has also become dangerous for staff and users – and people receiving direct payments to organise their own care were more-or-less left to their own devices for the first few weeks. I no longer provide personal care – but a decade ago, in the final years of my mother’s life, I did so and coordinated her direct payments. Manufacturing face-masks and hand sanitiser for the personal assistant she employed might have been challenging for our family.

Meanwhile, the duty of councils to arrange adult social care (already so weak) was further diluted.

For those of us carers and disabled people who are minority ethnic, the “hostile environment” for migrants and those who will never be “British” enough for some has further undermined trust. It has also made the staffing problems of the NHS worse: measures aimed at minorities can go on to leave the majority with less protection in a crisis.

If the government and senior NHS figures want us to trust them when they urge us to use urgent services when necessary, they should be more reliable. It is time for those in charge to protect frontline staff, properly fund public services, value people who tend to be marginalised and, for a nice change, be truthful.