Stop – yes you. Just stop a minute and take a deep breath. You’re going to need it, because I’m going to ask you to hold it. For at least three hours.
I’m a big believer in Confucian theory: I hear, I forget; I see, I remember; I do, I understand (metaphorically of course, we understand sensory impairments).
It’s the doing and understanding bit you need to hang onto.
Because some disabled people are so poor right now that the old heating vs eating chestnut has been pushed up a few unbelievable grades to breathing vs heating or eating.
For disabled people living on benefits who use medical equipment, including breathing equipment, many are now having to forgo heating and eating to run equipment such as CPAP machines, ventilators and suction machines, breathing is now starting to feel like an optional extra.
Still holding that breath? Good. Have a read of these direct quotes from disabled people in the latest Euan’s Guide survey:
“Oxygen concentrator costs no longer covered since electricity cost went up. Feel like I’m paying tokeep my daughter alive.”
“Everything has gone up, every part of my life is affected. I use a power chair, stair lift, bath lift, and CPAP machine. At times I feel like I have to choose between eating and breathing.”
“Using electrical equipment means we can only have one meal a day.”
It’s relatively easy to imagine skipping a meal or having a cold house.
It’s different to live it day in, day out, with the sinking gut feeling that goes with it, because there is no end in sight.
But the idea of a slow, cold gag of lack of breathing apparatus? It’s the stuff of horror movies.
The last gasp before going under the water. The Alien chestburster suckered to the face.
And yet it’s the reality for disabled people needing this equipment to stay alive.
DR UK is one of many organisations crying out for ringfenced emergency support for disabled people who need more money to run equipment, as well as a moratorium on prepayment meters for people failing to keep up with bills, and an amnesty of those who already have such meters and are shelling out around £600 a month to keep the breathing apparatus on.
You can’t scream if you can’t afford to inhale and exhale.
The NHS and social care – it’s a sin
When I look back upon my life, it’s always with a sense of shame. I’ve always been the one to blame. Said no Cabinet Minister ever.
England’s Archbishops however beg to differ, as this week they announced the need for a universal social care system along the lines of the NHS, while lambasting a lack of collective action on “our broken social care system” “a collective sin”.
Such language might not mean much to a secular society any more than a Pet Shop Boys’ lyric, but the sentiment is clear. A million older and disabled people are up a giant, care-free gumtree right now.
While the government acknowledges the problem, its lack of meaningful funding, while it soft shoes in opinion on how everything health and social care is so broken it might be an idea for people to start paying for it privately, shows how little it values older and disabled people’s lives.
The Tory mantra is always for a smaller state and lower taxes, but in the absence of a magic money gumtree, the only option to fund the need right now is taxation. From whom needs to be hashed out.
But the simple fact is, people are dying, excess deaths are up – that means people who wouldn’t normally have died in a given period, and the problem is a lack of available health care and social care.
It felt sneaky that a former Health Minister gently mooted the need to pay for GPs and A&E. Easy to dismiss as not Ministerial.
But when a system has been systematically deprived of funds; of the training up of staff needed on stream down the line; when it has been overmanaged and under resourced on the frontline for well over a decade, it is far too easy to say we now need a more…privatised solution.
We don’t. We need more funding. And the public are willing to cough up.
We already do. Taxes pay for the NHS in a collective bargain we nationally struck after World War II. We are already paying for our appointments.
The NHS is as British as fudge box-pretty villages, Spitfires, jam and Jerusalem. It’s time to stop trying to reframing it as a limping chicken in need of its neck wringing by privatisation.
Limps can be fixed or supported if the systems which deliver care and support are properly funded.
As the Archbishop of Canterbury said – social care is funded by the “meanest of means tests” in a system which does not help older and disabled people “to live the best lives they can”.
Meanness. A strong word for a government showing absolute weakness when it comes to compassion and doing the right thing by disabled people.
