The first of a four parts look at the benefits system as a whole and the key benefits for people affected by cancer.
Welcome to this first of a four part series of blogs, running through the key benefits for people affected by cancer, whether having received a diagnosis or a carer or family member. In this first part, we look at how benefits can make a real difference, some myths that stop people claiming, and suggest "three steps" to help ensure that you claim all the benefits to which you may be entitled; a sort of three steps to making sense of the changing benefits maze.
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1. Cancer costs and benefits can help
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1.1 The extra costs of cancer
Cancer brings with it extra costs – trips to hospital, keeping warm when at home more of the time and feeling the cold, keeping up nutrition or taking supplements, nutrition issues, changing clothes sizes, more help from others when you are not feeling like DIY, or need help with housework or the garden. Taxis when you are not up to driving and buses are too risky, extra costs and difficulties away from home. And yes, you know what, now and then a little treat because you deserve it or a little token for a kind friend or neighbour.
For people who have retired, income may not be directly affected, as pensions entitlements may carry on being paid with no change, in sickness and in health. It might still though be a challenge to face those extra costs.
For others, a long period of sickness or time out to support someone can start having some serious effects on income, as well to add to that financial squeeze from extra costs.
In a report, Cancer’s Hidden Price Tag, Macmillan found:
- Four in five people experience a financial effect to the tune of an average £550 a month
- 30% also experience a loss in income of an average £860 a month
That’s where claiming the financial support to which you are entitled can make a real difference. But one of the biggest problems with benefits is not the headline grabbing, shock reports of fraud. While of course it’s wrong it amounts to just 0.7% of benefits spending.
A far bigger problem - away from front pages - is the fact that some £20 billion a year goes unclaimed each year.
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1.2 Barriers to benefits
People may not know of their entitlements, have ruled themselves out anyway, or taken a hesitant look but felt confused, unsure and given up. And finally, some do make it as far as claiming only, on occasion, to be wrongly turned down or awarded a lower amount than they should. Many having given a go, accept that answer and take it no further.
Please then never rule yourself out from even taking a look, finding out more making that claim or at least checking out any disappointing reply. Advisers are there to help in every Maggie’s centre.
There are many myths that can get in the way of claiming benefits and we will explore some of these in another article. But some here are some common ones that can get in the way:
Objection 1: "We’re feeling the pinch, but we still have some income and a fair bit of savings, so surely we won’t qualify?"
You very well might...
The might is because a cancer diagnosis doesn’t automatically qualify you for a benefit, except for more advanced and life-limiting diagnoses. More often it will depend on how the cancer, treatments and any other health conditions impact upon you day to day.
But your finances never rule you out completely. Yes, some benefits do also involve a financial assessment, but many do not. Even then some can go higher up the income scale than you might thing. However the majority of benefits do not have financial criteria – or very few – so are open to all, regardless of other income, savings, money under the mattress or marrying well
Objection 2: "There will be others that need it more than me"
Well there may, just as others who may not need it as much. However, benefits are not awarded out of a fixed pot – so the fact of you receiving an award has no effect on the chances for someone else. You may perhaps get different rates according to your levels of difficulty, but selflessly not claiming does not help anyone else, apart from the Chancellor, who may be content with a thank you card .
Objection 3: "It feels a bit like charity and giving up my independence"
Most people receiving benefits would rather not have to, but think of these as a payout from your insurance policy and not a handout. The modern social security system was founded on the same basis as the NHS, we all pay in when we can and know that it’s there for us if we need it. Indeed social security emerged from the same Beveridge Report, and once came under the same ministry and funded by our collective premiums paid into National Insurance.
It is then more like a claim on your house insurance after fire, flood or passing plague of locusts , Far from undermine your independence, the aim is to promote it by helping you with the necessary resources to best deal with cancer and support recovery.
Language has gone a bit over the top and stigma raised in overzealous justifications of welfare reform in recent years. So it’s good to see all political parties in Scotland pausing for thought and signing up to “rights based social security” and a commitment to treat people with “dignity, fairness and respect” sentiments which we hope may be contagious.
Objection 4: "Oh alright, I can see you’re not going to let me get away with not at least thinking about it but isn’t it all impossibly complicated?"
Well, it can’t be argued that it can feel a bit of a maze at times. But impossible? No .
The rest of this post is aimed at demystifying some of the jargon and to suggest a bit of a route map and some initial information around key benefits for people affected by cancer. But you are not alone with just these articles or the many others it links to.
You can drop in to any of our Maggie's centres and speak to a Benefits Advisor. They can help you every step of the way from identifying benefits that apply now or may do in the future, helping you claim and deal with any follow up forms and assessments until all claims are in place. You can go back as circumstances change or to together consider the occasional disappointing and cheeky reply and what can be done about it.
You can find support in the forums on this site and from our resident Benefits Advisor.
And we can put you in touch with other local advisors if there isn’t a Maggie's Centre near you yet.
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2. Some basic – and sadly inevitable – jargon
Just a bit, but these are terms that keep coming up in the system, so it might be useful to clarify what they mean.
2.1 “Means tested” versus “Non-means tested” benefits
Some benefits are “means tested” – or sometimes called “income-related” This means that your means… It simply means that for these benefits there is an additional financial assessment as well as the usual criteria of e.g. being too unwell to work or being a carer. These benefits are claimed with a partner and your joint income and savings – with some important exceptions – will be taken into account.
But many others are “non-means tested” i.e. don’t have any financial assessment . You claim them individually in your own right and payment is based on the criteria of age, ill health, caring etc , regardless of all -or most income and any savings. And regardless of anything your partner is up to financially speaking.
2.2 “Contributory” v. “Non-contributory” benefits
In practise this is a distinction that only comes up within non-means tested benefits
Some of the non-means tested benefits require that you to have paid sufficient National Insurance contributions - either in recent years or over your working life – in order to qualify. These are the ones then that are also known as “contributory” benefits
Other non-means tested benefits - that do not have any such contribution conditions - are said to be non-contributory. And because the means tested benefits also act as back up safety net, they are all non-contributory.
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2.3 “Working age” versus “pension age”
There has always been a different approach to benefits before or after you reach pension age, but the boundary between these ages is becoming clearer and with many rapid changes on one side of the line and some big longer term ones on the other, it is becoming more and more like two separate systems.
The dividing line is becoming standardised at 65 as pension ages are equalised. Not quite, as at the time of writing it can be important for women to write 64 ¼ as they pop their latest painting on the door of the fridge. It will though be 65 by November 2018. And then fractions will again become important as the joint pension age starts moving towards 66.
But what will have disappeared will have been that awkward age for men, when they may have had a foot in both camps. Pension Credit has been linked to the women’s pension age for both men and women since it began – so men at one point could claim that from age 60, while claiming other working age benefits until 65.
Some benefits cut across this age divide and are available without age limit: carer’s allowance housing benefit, , council tax support and tax credits
There are and will be some interesting issues for couples where one is over pension age and the other under, but we will cover those as we look in more detail at benefits in pension age.
2.4 “Sickness” vs “disability”
This isn’t official jargon , but is a handy distinction to make sense of these rather different types of benefit.
- Sickness benefits aim to give you a basic income when you are too unwell to work . The test is actually “limited capability to work” rather than no capability. So while many people first claim them from their sick bed, there are incentives built in to allow you to try a little work as you recover.
- Disability benefits are about helping with the extra costs of living with a disability or long term illness , regardless of whether you are able to work or not.
Many people will have health limitations on working and face additional costs at the same time. They could get both a sickness benefits and disability benefits.
Others live with a long term condition and extra costs, but which may – with reasonable adaptations – not prevent them from doing regular – and even full time – work. They might then still receive a disability benefit, but not a sickness one.
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3.Three steps to full entitlement
You could group the 50 or so different benefits - it rather depends on how you count them – alphabetically under categories such as means tested and non-means tested or group them into who they are intended for e.g. sickness. Disability and family. It would give you a sense of imposing some order on a simple alphabetical list of benefits, but might not help that much in answering that key question which ones apply to me and how do they fit together.
So here is another suggestion – to try working through them in three easy steps. It is entirely up to you if you wish to sing do-re-mi from the Sound of Music as jump from step to step.
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Step 1: Earnings Replacement Benefits
These are the basic benefits to replace earnings from work. They also include the various statutory payments from an employer around sickness and children arriving into your home.
They include most of the original class of 1948, the basic mostly National Insurance based benefits that aimed to give you a stable platform to prevent you sliding into poverty. You claim these non-means tested benefits in your own right, some but not all based on your National Insurance Contributions .
They all aim to give you a basic income to replace your earnings. Names have changed and are sometimes less “does what it says on the tin'':
Sickness Benefit has become Contributory Employment and Support Allowance (in the main phase with work related activity component in some cases ) There are various reasons why you may not be able to earn just now:, unemployment, sickness, pregnancy, retirement, caring responsibilities.
You can claim as many of the benefits in Step 1 as might apply, but the general rule is that you can only ever receive one at the same time, whichever is the highest. There are as ever some exceptions to that. But these are also known as “overlapping benefits” .
The questions at Step 1 when you do have a choice, is which is best for me? The one that pays the most or perhaps the one that feels the most secure and least hassle. And is it ever worth claiming two at the same time ? Spoiler alert, Yes it can be for carers…
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Step 2: Means Tested benefits and Tax credits
Back in 1948 there was a strong feeling against means testing , but because of National Insurance conditions some people might have been left with no money, so there was a small back up from National Assistance. But these have grown like topsy just as many Step 1 benefits have been cut back a little.
So some people might find that they can’t claim at Step 1, because they don’t have the right NI contributions or simply find there isn’t one for their circumstances and this is where Step Two benefits come in very handy instead of Step 1
Others will qualify under Step 1 which they can keep if they have a lot of savings or a working partner. But others getting a Step 1 benefit may only have that as their main income and be struggling. Because they actually look at broader circumstances Step Two can help by either topping up your Step 1 income, or helping with certain bills or help with fares to hospital.
They broadly split into the traditional means tested benefits from 1988 – with some changes along the way – and the similar but different tax credits from 2004.
And most of the ones for people of working age are going through a big shake-up as they merge into the new Universal Credit.
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Step 3: Additional non-means tested benefits:
These are add-ons to all the other benefits. They are less aimed at basic living costs and more to help with extra costs related to
- Children: Child Benefit and Guardian's Allowance
- Living with a disability or long-term illness such as cancer. Attendance Allowance, Disability Living Allowance and Personal Independence Payment.
- Industrial and war disablement: almost mini little benefit groups of their own.
- Bereavement: moved here from Step 1, now that it’s more of a mix of a lump sum payment and a small monthly supplement rather than a top up of other benefits
Disability benefits in particular can be very relevant to people affected by cancer. Not just in terms of extra money that is never taken away from other benefits, but in the way they can increase entitlements at Step 2 and enable a carer to receive Carers Allowance back at Step 1. So after hop, skip and a jump to get to Step 3, it is always worth a quick revisit to those earlier steps.
Over the next three blogs, I will take a closer look at each step in turn to take a look at the key benefits for people affected by cancer.
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Useful links and further reading
Cancer’s hidden Price Tag – Macmillan – here
Getting face to face support from a benefits advisor near you
- Visit your local Maggie's Centre and talk with one of our benefits advisors. Find your local centre here
- See if there is a Macmillan advice service near you here
- Find your local Citizens Advice office: in England & Wales - here. In Scotland - here
Some more introductory, less detailed overviews:
- Find Out More About...Benefits after a Cancer Diagnosis
- Find Out More About...Benefits for difficulties with Daily Living and Getting Around
- Benefits and Cancer an Overview - a shorter summary version of the four blogs in this series - here
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To other blog in this series:
- Benefits and Cancer 2: Step 1 - Non-means tested earnings replacement benefits and statutory payments - here
- Benefits and Cancer 3 : Step 2 - Means tested benefits and tax credits - here
- Benefits and Cancer 4: Step 3 - Extra non-means tesed benefits for children and disability - here
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Blogs exploring these benefits in more detail
- Benefits in Pension Age – a look at Retirement Pensions old and new and extra help from disability benefits and Pension Credit - starting here
- Benefits for Carers – Carers Allowance and other support for carers – starting here
- Benefits for Sickness – a look at SSP, ESA and Universal Credit when unwell and the assessment processes involved - starting here
- Disability Benefits - starting with AA, DLA, PIP and Cancer - starting here