The Care Bill presents a once-in-a-lifetime opportunity for disabled rights

The Care Bill returns to the House of Lords this week. The Government has put down some welcome changes. But political leaders have to be visionary, be bold and think beyond the next election. So do councils – and so, too, do organisations like Scope.

Here’s why social care is so important. Disabled people want to live independently. Sometimes they need support to do so. That could be a personal assistant to help them get up, get washed and dressed. In 2013, I think most people would agree that this support should be in place. But independent living also means disabled people having a say in where they live, who they live with and how they go about their day. This means not being forced to get up the same time every day, eat at the same time every day and go to bed at the same time every day. Again, in 2013, I think most people would back that aspiration. Unfortunately, this doesn’t reflect the reality of many disabled people’s lives.

Take Martyn Sibley, a young disabled internet entrepreneur. He runs Disability Horizons and has just trekked from John o' Groats to Lands’ End in his electric wheelchair. He also still has to argue with his social worker about getting support to go to the toilet. This is unacceptable.

During party conferences Nick Clegg talked-up capping care costs; Ed Miliband backed whole person care and Jeremy Hunt championed integration of health and social care. In the summer the Chancellor found £3.8bn in June’s spending review to start to tackle the crisis.

The Care Bill returns to the House of Lords this week. It’s a once-in-a-lifetime opportunity to reform the care system. The Government has put down some welcome changes. But political leaders have to be visionary, be bold and think beyond the next election. So do councils – and so, too, do organisations like Scope.

I’m Chair of the Care and Support Alliance, a coalition of 75 organisations working together to improve the social care system in this country, so I know how important these issues are for older people, their carers as well. At the moment, there are two fundamental problems.

First, the London School of Economics estimates that 69,000 disabled people who need support to live independently don’t get it. Cash-strapped councils have been upping the bar for eligibility, with 83% of councils now setting the threshold at a higher level than they once did. Under the Government’s plans, all councils could set eligibility at the higher level. Experts say this will leave 105,000 disabled people outside of the system altogether. The Care Bill gives political leaders the chance to be take bold steps to reform the system.

The second problem is that even if you’re lucky enough to be in the system, it can be a struggle to get support that genuinely promotes independent living. In one recent survey, 40% of disabled people said that local care doesn’t meet basic needs like getting up, getting washed and dressed and getting out of the house.

Getting social care reform right will provide the groundwork. But councils need to place independent living at the heart of commissioning. Every disabled people should have a say in what support they receive, and how, when and where they receive it. Meanwhile, organisations like ours can’t just shout from the sidelines. We have to work together to show what’s possible. This means looking to the future, piloting and testing new ways of working, and making tough decisions about the services we provide.

As an example from our own organisation, Scope runs care homes. Our staff do a great job, but many were opened in the 70s, aren’t located in the heart of the community, and are simply not set up to offer disabled people enough choice and control in the 21st century. In the last five years, Scope has changed or closed ten of these services; last year, we decided to review all of our residential services for disabled adults because of these concerns. We’re now proposing to change or close more over the next three years. This will always be done in consultation with those most affected: disabled people who use them, their families and our staff, and we’ll always do our best to support all of those involved. But if we want to give disabled people the same say over where they live and how they live as everyone else, change is unavoidable.

I believe we can build a society where disabled people can genuinely live independently, but we have to think big. That starts this week with the Care Bill.

Will the Government put their money where their mouth is? Image: Getty

Richard Hawkes is chief executive of the disability charity Scope.

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A swimming pool and a bleeding toe put my medical competency in doubt

Doctors are used to contending with Google. Sometimes the search engine wins. 

The brutal heatwave affecting southern Europe this summer has become known among locals as “Lucifer”. Having just returned from Italy, I fully understand the nickname. An early excursion caused the beginnings of sunstroke, so we abandoned plans to explore the cultural heritage of the Amalfi region and strayed no further than five metres from the hotel pool for the rest of the week.

The children were delighted, particularly my 12-year-old stepdaughter, Gracie, who proceeded to spend hours at a time playing in the water. Towelling herself after one long session, she noticed something odd.

“What’s happened there?” she asked, holding her foot aloft in front of my face.

I inspected the proffered appendage: on the underside of her big toe was an oblong area of glistening red flesh that looked like a chunk of raw steak.

“Did you injure it?”

She shook her head. “It doesn’t hurt at all.”

I shrugged and said she must have grazed it. She wasn’t convinced, pointing out that she would remember if she had done that. She has great faith in plasters, though, and once it was dressed she forgot all about it. I dismissed it, too, assuming it was one of those things.

By the end of the next day, the pulp on the underside of all of her toes looked the same. As the doctor in the family, I felt under some pressure to come up with an explanation. I made up something about burns from the hot paving slabs around the pool. Gracie didn’t say as much, but her look suggested a dawning scepticism over my claims to hold a medical degree.

The next day, Gracie and her new-found holiday playmate, Eve, abruptly terminated a marathon piggy-in-the-middle session in the pool with Eve’s dad. “Our feet are bleeding,” they announced, somewhat incredulously. Sure enough, bright-red blood was flowing, apparently painlessly, from the bottoms of their big toes.

Doctors are used to contending with Google. Often, what patients discover on the internet causes them undue alarm, and our role is to provide context and reassurance. But not infrequently, people come across information that outstrips our knowledge. On my return from our room with fresh supplies of plasters, my wife looked up from her sun lounger with an air of quiet amusement.

“It’s called ‘pool toe’,” she said, handing me her iPhone. The page she had tracked down described the girls’ situation exactly: friction burns, most commonly seen in children, caused by repetitive hopping about on the abrasive floors of swimming pools. Doctors practising in hot countries must see it all the time. I doubt it presents often to British GPs.

I remained puzzled about the lack of pain. The injuries looked bad, but neither Gracie nor Eve was particularly bothered. Here the internet drew a blank, but I suspect it has to do with the “pruning” of our skin that we’re all familiar with after a soak in the bath. This only occurs over the pulps of our fingers and toes. It was once thought to be caused by water diffusing into skin cells, making them swell, but the truth is far more fascinating.

The wrinkling is an active process, triggered by immersion, in which the blood supply to the pulp regions is switched off, causing the skin there to shrink and pucker. This creates the biological equivalent of tyre treads on our fingers and toes and markedly improves our grip – of great evolutionary advantage when grasping slippery fish in a river, or if trying to maintain balance on slick wet rocks.

The flip side of this is much greater friction, leading to abrasion of the skin through repeated micro-trauma. And the lack of blood flow causes nerves to shut down, depriving us of the pain that would otherwise alert us to the ongoing tissue damage. An adaptation that helped our ancestors hunt in rivers proves considerably less use on a modern summer holiday.

I may not have seen much of the local heritage, but the trip to Italy taught me something new all the same. 

This article first appeared in the 17 August 2017 issue of the New Statesman, Trump goes nuclear