Who cares?

Last week my brother turned 50. Not very remarkable, you might think. Except that he is severely disabled with Down’s Syndrome and has some tricky health issues. Not that long ago it would have been considered remarkable for someone in his situation to live well into their forties – and a century ago life expectancy for someone with Down Syndrome was just 12.

Also last week I signed a petition about a severely learning disabled man from Suffolk who has had a stroke, and who was occupying a hospital bed he no longer needed because the local health and social care authorities have not agreed which of them should fund his package of care. His case, sadly, is not unusual. As happens so often, the issue here was whether the man needed ‘nursing’ or ‘social’ care. To most of us this is an abstract and rather meaningless distinction, not least since social care can include carrying out essential health-related tasks which most of us don’t have to do for ourselves, let alone for someone else (injecting insulin, for example). But providing care costs money, both health and social care organisations need to make financial savings, so each wants the other to pay. As the distinction between nursing and social care is often finely drawn even for the professionals, such debates are now protracted and commonplace.  The person who needs the care – and their family – are left waiting whilst care is broken down into a series of tasks and an associated set of costs.

I don’t believe the decision-makers in these or any other health and social care organisations lack empathy or understanding (even though it might seem that way at times). They are required to make objective decisions in the interests of fairness, and to use public resources effectively, and that is what they are seeking to do. But they are hamstrung by inadequate resources, as we don’t place enough value on care work to pay for the levels of care we would ourselves wish to receive.

Care costs, there is simply no way round this. If we need someone to help us get out of bed in the morning, and (for whatever reason) we don’t have family members who can help us do that, then that carer needs paying. (And even so, many carers who help people to live are not themselves earning a living wage, nor do they often have time to provide companionship and social support to the people they care for.)  As we constantly hear in any debates about the future of healthcare, we live in an ageing society. For people with learning disabilities that means they will often outlive their family carers – or that their physical care needs will become impossible for family carers to deliver. And, due to the complex nature of their disabilities, that care may be complicated to plan and deliver.  But that doesn’t mean they should be subjected to abstract debates about the nature of care. Perpetuating the ongoing division between nursing and social care just makes work for the organisations involved, wastes hospital beds, and leaves the cared-for person – and their family – adrift in the system. People who need care are entitled to it, whatever it is called. It’s time we gave them the dignity of paying for it.


One response to this post.

  1. Posted by Chris Clark on 25 May 2015 at 9:37 am

    Very well said, Emma. One of my sisters has Retts: she’s over 50, which is extraordinary, a testimony to the quality of care she’s received, albeit supplemented by regular visits and timely interventions by my parents. I once worked for just a week in her hospital – I was exhausted, physically & mentally, the pay packet unexpectedly light. Most of the patients were discharged to “community homes” in the 1980s and the land sold off for “executive housing”. The more problematic patients, like my sister, had to be moved to special facilities, that cost more to run but evidently not in terms of salaries for the carers. In my opinion, they can’t be paid enough for their constant diligence.


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