Cancer or dementia: the social care system is unfair to people with either condition

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It’s a frequently reported statement: ‘people who have cancer will get the treatment they need for free on the NHS while those with dementia must pay for the support they need’. For those trying to reform social care, it is a simple, clear statement that the public can immediately grasp and understand as unfair.

Of course, like many clear and simple statements about complex issues, it is not entirely true. The real distinction is not between the two conditions themselves but between the two contrasting elements of our health and care system: a free National Health Service and a means-tested social care system.

While people with cancer may overall get more ‘free’ care than those with dementia, that’s largely because there is far more medical – and therefore NHS – treatment available for cancer than for dementia. Indeed, as Simon Stevens has noted, the biggest single shift in the health and care landscape would be a medical treatment to slow or cure dementia: ‘If that happened, it would, at a stroke, substitute what is currently social care spending and it would become health spending.’

'According to the Alzheimer’s Society, people with dementia will on average pay £100,000 over their lifetime for care. It is a huge unfairness that understandably outrages and distresses the people affected and their loved ones'

At the moment, however, the main support available to people is not medical but social care and here people’s eligibility depends on their finances. If they have assets above £23,250 they will pay for their own care – unless they can demonstrate that their social care costs arise from a ‘primary health need’, in which case the NHS will pick up the bill through NHS Continuing Healthcare (CHC).

There are ongoing concerns about the fairness of CHC for people with dementia and, for whatever reason, the reality is that many people with dementia will not qualify for it. As a result, according to the Alzheimer’s Society, people with dementia will on average pay £100,000 over their lifetime for care. It is a huge unfairness that understandably outrages and distresses the people affected and their loved ones. It needs to change. Yet the same inequitable system also applies to people with cancer (or indeed other conditions such as multiple sclerosis and Parkinson’s): while medical care such as GP visits will not be charged, if they also require social care – for example, help with getting dressed or washed – they will be charged unless they have either low assets/savings or a ‘primary health need’.

And as cancer shifts from being seen as a fatal illness to a chronic one, with greater focus on the long-term needs of those living with the disease, this may draw more people into the remit of social care. The charity Macmillan Cancer Support found in 2014 that around two in five people living with cancer reported having needs that could be classified as ‘critical’ or ‘substantial’ according to the Fair Access to Care (FACs) criteria then used by local authorities to determine eligibility for social care support. Despite this, Macmillan found that only one in five received any kind of formal support and one in six had needs but received no support at all from anyone. It is not clear why this is (though Macmillan is trying to update its evidence to understand it). Many of the reasons may be the same as for dementia: people’s needs are classified as too low, their assets are too high or they are not defined as a ‘primary health need’ and therefore able to access NHS Continuing Healthcare.

In addition, however, some may not even realise they could apply for social care support, and Macmillan believes people with cancer may be deterred from applying if they are told that the NHS will meet all their needs.

'As cancer shifts from being seen as a fatal illness to a chronic one, with greater focus on the long-term needs of those living with the disease, this may draw more people into the remit of social care'

Though this is a complex issue, the solution is relatively simple (if economically unpalatable). It is to align the systems more closely and make more social care free at the point of use. The Barker commission suggested that this should start with people with the highest level of need and then be extended. The Labour party has proposed free personal care, as implemented in Scotland. And there is already legislation, passed but not implemented in the wake of the Dilnot commission report, to raise the means test threshold to £100,000, which would entitle far more people – albeit not everyone – to free council-funded care. All these reforms would greatly increase the support available to people with social care needs, whether they have dementia, cancer or any other diagnosis.

The Prime Minister came into office promising to ‘fix’ social care. This is where he needs to start.

Comments

Margaret Potter

Position
Director,
Comment date
30 September 2019

Continuing Health Care is almost impossible to qualify for; my mother, vascular dementia, unable to weight bear, unable to remember she can't walk so requires 24/7 monitoring, unable to recognise close relatives, time, place, date, absolutely no short term memory. Doubly incontinent, needs every aspect of personal care, hoisted from bed to wheelchair, to chair. Anxious, distressed, insomnia. Deemed social care, so pays £5300 a month.
It is a national disgrace that the most vunerable & frail in our society are abandoned by successive Governments. In utter despair; dementia has stolen my mother's dignity, the State have raped her of everything else.

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