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.

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Comments

John

Position
Unpaid,full-time carer,
Organisation
n/a
Comment date
10 September 2021

I've cared for my partner for nearly 9 years, at home 24-7. Managed to keep Social Services well away.
My partner owns our property, which I helped to pay for when working. No way will I let our home be snatched from us to pay for so-called "Social Care". A total disgrace that the SS even get involved in medical matters.

Beverley

Position
Carer,
Comment date
14 July 2021

My elderly father was assessed during the Pandemic as having Alzheimers / mixed, he was assessed by Social Services as a (doLs) case 18 months ago and as a Self Funder pays over a £ 1,000 a week for Social Care, he was admitted to A &E last week as an emergency (false alarm) and was transported without a Chaperone to hospital, the Care Home had packed some clothing in his holdall. When I arrived at the hospital 25 miles away he was hanging out of the stretcher bed holding on to his bag for dear life thinking his (tools) were going to go astray and he wouldnt be able to go to work. I could have wept , my previously well presented, and sophisticated man (as the Social Worker described him) resembled an unkempt and uncared for individual, sitting in another residents old cardigan , trousers with no belt that he was clutching onto. Long dirty fingernails, no hearing aids (he keeps taking them out) and have now long gone. The hospital transport ( which is now privatised) did not arrive I was told there had been a Cardiac Arrest, 10 hours later we arrived back at the Care Home. This is in comparison a pretty descent Care Home, unfortunately we have not been able to go in his room or indeed the home itself due to the Coronavirus restrictions so I had to leave him at the door. My dad who has incidently been a life long supporter of the NHS and disagreed with Private healthcare deserves better. His last words to me as they took him back into the Care Home were "This is bloody Murder". I think that just about sums it up.

Sharon

Position
representative,
Comment date
12 July 2021

It is so unfair - NHS or integrated care system (or what ever its called) should provide care and it should be funded for all who need it. Under the NHS constitution it says that the NHS provides a comprehensive service, available to all (The service is designed to improve, prevent, diagnose and treat both physical and mental health problems with equal regard) and Access to NHS services is based on clinical need, not an individual’s ability to pay.

Carers are effectively having to be nurses anyway, from outside the NHS system they are expected to coordinate the overly complicated NHS network of care necessary for those with dementia - GP, district nurses, community mental health, OT, Physio ..... etc. With Cancer you get an oncology consultant that does the care plan and coordinates treatment but not Alzheimers or other forms of dementia diseases.

Social Services should be for arrange housing / fund living costs for individuals that do not have a job or pension or savings, not care which is always a health need.

It is not fair that someone that has prepared for their retirement (worked hard all their life paying taxes, and into a pension, then and continues to pay taxes on their pension) has to pay £5417 a month because they have a disease that means they need care, (this is in a not for profit charity care home). I accept that they should pay housing costs but not the care on top. To add insult to injury - Private Care home fees are so expensive because self funders subsidise those that social services and NHS fund.

I do question why people in secure dementia care homes are not funded the same as mental health patients where care is funded following a section 117?

I do question how much time, effort and money goes into the many complicated assessments by social services and NHS to decide who is responsible (or not!) for funding and care decisions - DOLs, Continuing Healthcare, social service needs, social services finance, various health (by district nurse, CMHT, OT, Physio....). Surely it would be much simpler (& cheaper) if the GP had the time and resources to monitor and coordinate the care of their patients and to communicate to the administrators of other departments for funding and specialist services.

just my view!

Keith Clinch

Position
Retired/Carer,
Organisation
Family
Comment date
05 July 2020

It is horrible that my mother in law, herself once a Care Home Manager, who had worked hard all her life and is now being robbed blind by Care Home Fees, unfairly, because the majority of other residents are socially funded, and pay nothing. It was her greatest wish that her 4 children would benefit from her and husband, John's hard work. John died one week into his 65th birthday, and had a non existent retirement. Now Maureen has to date paid over £200,000 in fees. One child has sadly died of cancer and within no time the entirety of their parents lives and hard work will be gobbled up, and gone. Alzheimer's is a cruel, cruel disease, it is chronic, and yet if she had cancer the NHS would have helped thoroughout. No such luck. She funds herself to the tune of £5,000 per month!?!? It is wrong.... so very wrong... and despite Boris' comments zero has been done to help the families who have to undergo this terrible, terrifying, humiliating, life destroying disease. Help is needed and needed now.

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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