Disabled people and their carers left living in fear

Published by The i paper (16th March, 2020)

Eleven years ago, when swine flu rampaged around the planet, Katie Clark and her family were among those to suffer. They had sniffs and snuffles that seemed no worse than the usual winter bouts of influenza, laughing about media hype as television news showed footage of people with masks. Then her 17-year-old daughter Nadia went down – and within five hours of feeling unwell, she was being rushed to hospital in an ambulance.

It was the start of three terrible weeks. Nadia was put on a ventilator in Hexham, then moved fast to a better-equipped unit. She needed a tracheotomy to facilitate her breathing. Her frightened family, camped out in a nearby hotel, feared the worst. ‘It was awful’ said Katie. ‘Just the most horrendous time imaginable.’

So why did Nadia get hit so hard and almost die, unlike the rest of her family? The reason is simple. She has one of those ‘underlying health conditions’ that we are suddenly hearing so much about – cerebral palsy combined with deafness. This has not stopped an impressive young woman, now 27, from thriving at a mainstream school, travelling widely and mentoring others with disabilities.

But as another virus wreaks far worse havoc around the world and our nation waits nervously for the storm to fully break, her family is again left in terror. Partly this is because people such as Nadia – and my own daughter Iona, one year younger but also with profound disabilities – are at very high risk from coronavirus, despite being largely ignored in discussions over this disease.

Katie told me their house in Halifax looks like a hospital with warning signs about hand washing posted everywhere. She and her husband have had hideously tough discussions with their daughter about resuscitation while ensuring plans are in place should they be among fatalities. We are having the same conversations in our home.

But it is not just the risk. What fuels discomfort is the painful message sent again to our families – and thousands more like them – that our sons, our daughters and our siblings are at bottom of the pile in our society. Nadia relies on up to ten part-time carers; my daughter – who does not walk, talk or see and has complex epilepsy – also needs a big team providing 24-hour support. The government might dismiss carers as ‘unskilled’ but these superb people offer specialised support such as using sign language with Nadia or giving life-saving medication to Iona. Our families would soon collapse without them.

So what happens when the virus rips through care teams and families, as it most surely will over coming weeks. After all, some carers visit up to 40 people a day. Yet who cares when the carers can’t care? There has been silence from the authorities, few questions from politicians, no provision of protective gear. Such is the confusion there is talk of banning family members from care homes but also suggestions of drafting in volunteers. Once again, we see how social and community health care is the Cinderella public service, unloved and underfunded.

BBC Breakfast put these points to Helen Whatley, the alleged care minister, whose platitudinous response was pitiful. She claimed care providers could offer ‘mutual support’ – a sick joke when there are 120,000 social care vacancies even before this virus starts taking staff out of the workplace. Her department offered ‘guidance’ on Friday suggesting use of volunteers – but carers need training to communicate with someone such as Nadia or follow medical protocols when Iona has a seizure.

David Halpern, a key government scientific adviser, argues we can ‘cocoon’ at risk groups ‘so that they don’t catch the disease’ – which shows he is oblivious to the impossibility of ‘cocooning’ an old, sick or disabled citizen dependant on care. Now the strategy is to ‘shield’ people who are ‘medically vulnerable.’ The aim is to control coronavirus while developing herd immunity.

This contentious approach means almost two-thirds of the population need to become infected, which leaves Britain comparatively sluggish about closing schools and dispersing crowds. I am sceptical it is the right course but I am not an epidemiologist. I appreciate also that politicians and scientists are responding to new and fast-moving events. Yet it is hard to ignore a nagging fear their approach views many ‘vulnerable’citizens as dispensable as experts warn 400,000 Britons could die.

And what happens when hospitals are flooded with cases and doctors must chose whom to place on ventilators? We have seen in Italy that clinicians on the frontline of this crisis are adopting a utilitarian approach by prioritising those with ‘greater likelihood of survival’ and ‘more potential years of life.’ Prejudice in the NHS, reflecting wider societal attitudes, already leads to the needless deaths of an estimated 1,200 people with learning disabilities each year. What hope for the chances of a person with profound disabilities amidst the looming melee as exhausted doctors are forced to make agonising decisions and play God?

I spoke last week also to Liz, who oversees care teams for her daughter and her brother. Both have Downs Syndrome, which leaves people vulnerable to respiratory problems. ‘I’ve had no help, no advice,’ she said like others. ‘What happens if there are suddenly no carers and my brother becomes ill: do I help him at risk of infecting myself and my daughter? Or they both become ill at the same time and I have to prioritise one?’ And what if they end up in hospital, I asked? ‘We know they won’t be prioritised,’ she replied grimly.

Liz admits she is petrified in these dark days of pandemic. She is not alone. But once again, listening to stressed families filled with fear and lacking support, I am left to wonder if anyone really cares about people with disabilities or their carers.

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