Extra non-means tested benefits and cancer

Monday 18 June 2018

Welcome to the fourth and final part of our Benefits and Cancer walk through the main benefits that can apply to people affected by cancer. 

In previous parts we looked at: 

  • In Part 1 how cancer costs, benefits can help , myths get in the way and how taking things in three steps might help
  • In Part 2, the main Step 1 basic Earnings replacement benefits in more detail
  • In Part 3 How means tested benefits can offer support if you don’t qualify in Step 1 or can top up your income from Step 1. And how they can help with specific additional costs such as rent, council tax or health costs. We also touched on the big change underway for those of working age – but some impacts on older people too – as Universal Credit comes in.  Credit 

This time we focus in on Step 3, which offers extra non-means tested help with the extra costs of living with a long term illness or disability, along with additional help for children, bereavement and indudustrisl and war disability.  And why it can be wise to jump back to Step 2 for a quick check

Finally, to help make sense of it all we will have a look at a couple of examples of going through those steps in practise.

Step 3. Extra Non-Means Tested Benefits

These are extra non-means tested benefits to help with the additional costs of living with a long term illness or disability, during bereavement or to help with child costs. 

They are paid irrespective of other income or savings so can apply to anyone affected by cancer who meets the criteria and mainly do not require any National Insurance contributions either. Nor is ability to work or not an issue as these are not there as “earnings replacements” like Step 1 and Step 2, but to help anyone  - in work or not – to meet additional costs 

So, anyone who meets the criteria can have these important amounts paid whether on top of Step 1 and Two benefits , earnings in work or anything else. 

They are also largely ignored as income in the sums for Step 2 benefits and can actually trigger extra entitlements in those sums in your favour. It’s then always worth revisiting Step 2 after a successful award from Step 3. You might either see an increase in your existing Step Two benefits or become entitled to help under Step 2 when previously you were not.

Step Three benefits do one of four things:

  1. extra money for children 
  2. extra money for living with a long term illness or disability
  3. special industrial and war disablement schemes. 
  4. extra money in the early stages of bereavement

  1. Extra money for children

If you have a child or young person then your Child Benefit (CB) is unaffected by a cancer diagnosis and any changes in income. If you had a child before, then you continue to have one now. 

CB involves a higher amount for the first child and a lower amount for each other child. Child benefit is not affected by the “Two Child” policy and you continue to receive it and be able to make new claims for it, regardless of the number of children. 

In summary a child is someone under 16 or still in non-advanced education up to the age of 20. So, you could claim for a young person still at school or college doing up to A levels, but not for a 17 year old off to University.

The more likely impact of a fall in income following a cancer diagnosis is that you may now become entitled to additional help under Step Two, whether from Child Tax credit or child amounts within Universal Credit. This might be an increase in an existing entitlement or that you now become entitled for the first time – because your household income may have fallen.

Child benefit isn't only for the children's own parents to claim - it could be claimed by anyone taking on responsibility for those children - an older sibling, other relative or family friend.

  1. Disability Benefits

These benefits are not meant to cover the basic costs of living (that’s for Step 1and Step 2 benefits – but rather to help with the extra costs that long term illnesses and disability can bring, which is why they are always paid on top of any other income. Of course, once you qualify it is entirely up to you what you spend them on.

Disability are not about whether you are able to work or not and can be paid in work, so they can be really helpful as you continue or ease back into work.

So potentially anyone with a cancer diagnosis might get an award, regardless of financial, family, age or other circumstances. An award can also enable a carer to claim Carers Allowance (under Step 1) and extra carers premiums (under Step 2).

And with the potential to always be extra income and to trigger extra disability premiums/elements in Step 2 benefits and tax credits, you can see why Advisers break into  purple prose when talking about these benefits and get tetchy when they get messed with.

2.1 The three different "disability" benefits

There are now three disability benefits – but you can only have one at a time - as they broadly each do the same thing:

1. Attendance Allowance(AA)– if you are 65 or over when you first claim – based on “care” needs – i.e. you could do with a hand with personal care tasks or keeping an eye on, whether or not you actually receive any help

2. Disability Living Allowance (DLA)– used to apply to everyone under 65 when thy first claimed. It still does to under 16s, but there are no new "working age" claims and existing claimants aged under 65 at 8th April 2013 will have to switch to Personal Independence Payment (PIP) instead . There are two parts to DLA:

  • DLA Care is the same as  Attendance Allowance -  looking at difficulties you experience with daily living tasks - but with an extra lowest rate bolted on for lesser care needs.
  • DLA Mobility offers extra help for help needed getting about out of doors

3.  Personal Independence Payment (PIP) has replaced DLA for new claims from people aged 16 to 64. And those who were getting DLA and were aged under 65 at 8thApril 2013 are going through a process of claiming PIP instead of their DLA. PIP is similar to DLA  in that there are two components:

  • PIP Daily Living - for help with a narrower range odf daily living activities but now paid at one of two rates
  • PiP Mobility  also at one of two rates for difficulties getting around - but with different areas of difficulty linked together. 

However, PIP is far from DLA with the lowest care lopped off. The criteria and assessment are very different from either AA or DLA. 

You can see far more information about AA, DLA and PIP in other Benefit Blogs which will be linked below as these are posted here on Maggie’s Online.      

2.2 Assessment for disability benefits

However, for all these disability benefit,  a cancer diagnosis does not mean you will automatically get a disability benefit though.

Under the "normal rules", it is about how the disabling effects of cancer, its treatments and any other health issues impact on a range of day to day activities.  Assessments can be tricky:

  • while some procedures with some cancers have a very definite and specific impacts, other effects – such as chronic fatigue, chemo fog, low mood – have a more general, vague and harder to pin down; but still pose very real limitations. 
  • The general focus of the assessment is a long term one – so you may well tick all the boxes during active treatment, but an award may rest on the fact that there is likely to be some ongoing effects for some while after. It may be more the "side effects" easing off - and the “late effects" thereafter - that can be key to an award. But how you fare during treatment is still highly relevant and may suggest the length of any recovery.  

It might have been simpler if PIP – along with the many other processes and models it has adopted from Steps 1 and Two ESA, had adopted the same automatic award for people awaiting, receiving or recovering from” major cancer treatments. 

2.3. Special rules for more advanced and life limiting cancers

For those with more advanced and potentially life limiting cancers there is a fastrack route that bypasses these assessments based on a DS1500 certificate from your consultant or GP. 

This will fast track your application and lead to automatic payments of the top rates of Attendance AllowanceDLA Care or PIP Daily Living . Some further information around any difficulties getting around may lead to the inclusion of DLA or PIP Mobility as well.

Awards are made for three years and can be renewed if “special rules” criteria still apply. 

  1. Industrial and War Disablement schemes

These are like mini-benefits schemes of their own which can produce more generous payments than the main system. They offer additional protection for those who are injured or get an occupational disease from more hazardous employments or services in the armed forces. The War Disablement Benefit has been replaced by a new Armed Forces Compensation Scheme for mor recent veterans.

They include: 

  • some benefits that do the same job as the disability benefits above, but can sometimes pay more. You won’t get both, so it may be worth applying for both to see which comes out with the highest amount. These will also be ignored in Step Two sums and possibly trigger extra entitlements
  • The main Industrial Injuries/War Disablement Benefit does something a bit different. It provides a compensation income based on a %age disability separate from sickness benefits for being unable to work or amounts to help with extra costs. It is an additional protection and compensation for having put yourself in harm’s way whether in dangerous industrial processes or in service in the armed forces. 
  • a number of other allowances : Reduced earnings, unemployability supplements and a whole range of additional amounts in the War Disablement Scheme in particular.

The amounts are non-means tested and payable regardless of National Insurance, but may be taken into account as income under Step 2 , perhaps with some part of the income ignored. However most local councils ignore War Disablement Benefit in the sums for Housing Benefit and Council Tax Support.

There are some cancers recognised as prescribed occupational diseases, within the Industrial Injuries scheme. Perhaps the biggest relevance to people affected by cancer relates to mesothelioma that may be related to asbestos exposure

  1. Bereavement Support Payment 

Support during bereavement has made a bit of a journey from Step 1 to Step 3 in this unofficial grouping of benefits. Originally the post war scheme was devised in a world of male family breadwinners as women were seen as largely returning to peacetime home and family. 

Thus, the National Insurance scheme offered support to women who lost not only their partner but their financial support with an ongoing Widows Benefit and a more generous Widowed Mothers Allowance while still bringing up children . 

Times moved on, economic patterns changed  and arrangements were ruled discriminatory on gender grounds, so the weekly payments became Bereavement Allowance and Widowed Parents Allowance payable equally to bereaved men and women.  The additional cost was recouped by time limiting the Bereavement Allowance to a year.

There was also a £2,000 Bereavement Payment paid as a separate lump sum.

The new system of Bereavement Support Payment is rather different in thinking:

  • Firstly, it moves more to a lump sum amount rather than a regular income
  • Secondly rather than seek to replace earnings it offers a monthly top up to help with a time limited top up and adjustment to living on a single income.

These are no longer then a full earnings replacement benefit that would give you a Step 1 income for a year after bereavement or until the children you had together had become independent grown up . Instead you might claim benefits in your own right, perhaps as too unwell to work as you work through your bereavement or perhaps as a jobseeker.

The Bereavement Support Payment then acts more as a Step 3 adjustment and additional support with mainly a lump sum and a smaller top up income during the first 18 months of your bereavement. 

  1. Working through the steps in practise 

You may find the three steps approach helpful – think "Do-Re-Mi" from the Sound of Music. In each step there may be questions to ask yourself:

  • In Step 1 – is there an obvious Step 1 benefit for me or possibly a choice in some circumstances . If there is a choice, which pays the most, feels the most stable or feels most appropriate for me.
  • In Step 2 – again which ones may best suit my circumstances or offer the best choice. For those of working age there will be an issue of whether it will be the old legacy system or the new Universal Credit? Again, in some circumstances there may be a choice as to whether to hold on as you are or switch to the new UC. Do get advice on this independently rather than follow suggestions from official agencies. 
  • In Step 3 – it is always worth exploring Attendance Allowance or PIP, if you are going through cancer treatments. It may not be automatic, but there can often be a high chance of qualifying. And if AA or PIP are awarded it is worth revisiting Step Two again to check for some positive impacts there. 

Here are a couple of examples walking through the steps based on a couple of common scenarios amongst visitors to Maggie’s Centres:

5.1  "Working age" Jim

Jim is 45 and has to stop work when he is diagnosed with cancer:

  • Step 1:  he gets  Statutory Sick Pay from his employer followed by Contributory ESA after 28 weeks being off sick 
  • Step 2: he gets a top up from Income-related ESA which also makes his claim for Housing Benefit and Council Tax Support easier. 
  • Step 3: his advisor helps him apply for  Personal Independence Payment and he gets some useful extra amounts at the standard rate in PIP Daily Living  £57.30 and PIP Mobility £22.65 .  When it comes through he is delighted to learn that the extra amount is not taken off his Step Two benefits
  • Back at Step 2: But on revisiting Step Two he is astonished to learn that with a couple of ticks and a signature on a short supplementary form he can get an extra £64.30 in his Income-related ESA.

5.2 "Pension age" Joan    

Joan is 70 when she is diagnosed. 

  • Step 1 : She already has Retirement Pension from Step 1 which doesn’t change, along with a small works pension. But she is worried about the costs of getting to and from the hospital for her chemo and other extra costs getting about and back at home. 
  • Step 2 After talking to a benefits adviser, she finds out she has been missing out on £10 a week Pension Credit top up all these years and also full help with her council tax. The award of PC also means she can  reclaim the costs of travel to hospital without further form filling. 
  • Step 3, The advisor also helps with an Attendance Allowance claim that comes through at £57.30 a week. 
  • Back at Step 2: Joan is very pleased with this  but even more delighted  when her benefits adviser fills in a quick form and she gets an extra £64.30 on her Pension Credit.

These examples are common ones, but the amounts raised don't apply to everyone  – amounts will vary according to the individual difficulties you experience, your individual circumstances and which system you come under in Step 2. 

The only way to be sure is first explore the ones which may apply in your case and then apply for them. And sometimes not to be willing to take no for an answer. You may feel that with additional information you can take steps yourself. Or it may well be that – independent and organised as you normally are – you would welcome support from a Benefits Advisor through this process.

Every Maggie’s Centre has a benefits advisor in recognition of the real need, financial worries and the need to be a little firm at times with the agencies who administer benefits. You can find your nearest Maggie’s Centre here  

If there isn’t one near you, then it is worth entering your town or postcode into the Macmillan find a local service here or the Citizens Advice service in England  & Wales here,  in Scotland here or in N. Ireland here  . 

And finally

This concludes a run through of the most likely benefits to apply after a cancer diagnosis. The Steps idea is an entirely unofficial grouping that I hope helps make a little more sense of the benefits maze and helps in asking the right questions to ensure you get your full entitlement to give you the financial social security in difficult times 

There are shorter more thumbnail overviews if you want to step back  a little from the detail in these four blogs

And more detailed blogs on individual benefits or groups of benefits f: e.g. for sickness, for disability for older people or for carers. 

Please then do check out your benefits entitlement from this information and talking to an Advisor to help you for as little or as much of the way as you need in identifying your entitlement, making those claims and not taking No for an answer. 

The biggest issue with benefits remains not the small proportion lost through fraud or overclaiming, but the huge amounts left unclaimed that could make a real difference as you go through a cancer journey. Every year billions lie unclaimed and don’t let some of that be money that could make a real difference to you

Best wishes and good luck,


Maggie’s Online Benefits Advisor. 

Links and further reading:

To less detailed overviews

To other blog in this series 

  • Benefits and Cancer 1:  An Introduction: Costs and benefits, myths, basic jargon and three steps to full entitlement - 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

To more detailed blogs on Step 3 benefits

  • You may like to read my other my other blogs on individual benefits or groups of benefits for more details  and examples about the criteria, forms, issues to help you make your claim.
  • As more are of these appear are updated and revised from the former Online Centre or new ones written, I will list the key ones to start off your further investigation of these benefits below.  
  • You can view all currently available benefit blogs from my Profile Page here

How to claim – forms, online and by phone -  from.gov.uk

  • Child Benefit  - here
  • Attendance Allowance (AA) - here
  • Disability Living Allowance (DLA) - new claims for children here, information for adults here
  • Personal Independence Payment (PIP) - here
  • Industrial Injuries Disablement scheme - here
  • War Disablement Benefits Scheme - information for existing claimants here
  • Armed Forces Compensation Scheme - here

Finding individual help from an advisor:

  • 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

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