Benefits, work and cancer: Stepping back from work
The first in a three part series looking at how and when financial support from work and different benefits can change as you step out of work after a cancer diagnosis (in Part 1) and ease back into it in recovery (in Part 2). There is a similar - but different sequence for carers (Part 3)
Welcome to a trio of blogs focusing on benefits and cancer in relation to work.
You can find a “see the woods for the trees” overview in Benefits after a Cancer Diagnosis and from there the many follow on Benefits Blogs on key benefits for people affected by cancer, whether by groups of benefits (e.g. benefits for sickness) or of people (e.g. carers, older people).
However, this mini-series looks at the relationship between benefits, work and cancer, as you might ease out from work for a bit through treatment and be easing back in recovery.
Differences in retirement
But, if you are one of the many for whom cancer has come into your life after retirement, this blog -and its companions -may feel less relevant to you, as issues around stepping away from work or easing back into it may not be ones for you. Pension age has almost finished phasing up to 66, where it stays until another 2-year phasing-in process starts in 2026 to take it up to 67 by 2028.
Once over pension age, your unwellness for potential work is not an issue for basic benefits such as State Retirement Pension or basic amounts within Pension Credit, which are paid because of your age, in sickness or in health. However, if you are working past pension age, then Statutory Sick Pay can be paid. Do still check out the extra benefits available such as:
- an award of a disability benefit such as Attendance Allowance, which soon will become Disability Assistance (for older people) in Scotland – both payable regardless of financial circumstances.
- increases in existing Pension Credit or perhaps now becoming entitled to it
You can see more in a separate series of benefits Blogs starting with: Benefits and cancer in older age
About these blogs
This Benefits Work and Cancer series, then, focuses on those of “working age” i.e. from age 16 up to pension age. The big difference is that the benefits system is both:
- less generous in amounts and spirit
- and more complicated with different benefits for different reasons why you may not be working: e.g if unwell, a carer, unemployed, parenting or expecting etc.
This mini-series then is in three parts:
- here in Part 1, I look at how sick pay schemes and benefits inter-relate and when the different health-related benefits kick in, as you move from short term sickness absence into longer term
- in Part 2, I will look at how these benefits go into reverse and ease off – rather than suddenly stop – as you start as start to ease back into work. E.g you do not have to be totally incapable of work to claim benefits for sickness and can continue with them while working (within limits)
- In Part 3, I do the same in relation to carers, as it is a similar, but different story of a relationship between working and caring. A “for carers on the other hand…” within Parts 1 and 2 may be a bit too to cope with.
I will follow a not untypical journey through treatments and into recovery as an illustration of how benefits can follow and adapt as you ease out of work for a bit and then back into it. But of course, your experiences -and the issues for you - may be quite different, so do talk your options and situation through with a Benefits Advisor.
Some general points about benefits
All the benefits we look at will be either:
- "non-means tested" – claimed by you individually and paid at flat rates, if you meet the criteria, regardless of any savings and most income; or
- "means tested" – with an extra financial assessment together with any partner. Most other income and savings will affect the amount you will get. These may be paid instead of an equivalent non-means tested benefit or as a top up to them
Many people rule themselves out of looking at benefits, because while feeling a pinch from any reduced income or extra costs, they still have enough other income or savings to just about manage. However, you may find there is more help than you had thought – especially from the non-means tested benefits – so do double check with a Benefits Advisor
Sickness versus disability benefits
Health-related benefits fall into two sorts:
- “Sickness benefits” - a basic income when you have limited capability for work (not the same as being totally unable to work at all) . Assessments are closely connected with your ability to work.
- “Disability benefits” - help with extra costs that a long-term illness or disability can bring, regardless of whether it limits your ability to work. They are always paid on top of any other income (including sickness benefits) . While you may start a claim while feeling rather poorly as regards work, you can continue to receive them back in work if say “late effects” still leave you with extra day to day difficulties.
In work benefits
Some benefits focus on support if you are in work, but when you might be on low - or temporarily reduced – earnings. Others offer a more general support e.g modt households claiming Housing Benefit (to help pay the rent) are “in work”. These might all play an important role in Part 2 as you ease back into work, perhaps on lower hours/earnings for a a little while.
Changing means tested benefits
The six main “working age” means tested benefits of the past – often called the “legacy benefits” - are in the slow process of merging into the newer Universal Credit (UC). This won’t be completed until 2024 or even 2026 (by some estimates). We are now at a stage where most new claims are under the new Universal Credit system, but most people eligible for help from these benefits are receiving them as “legacy benefits”. It is then still a tale of two systems
Things are straightforward if:
- you would only qualify for non-means tested benefits anyway; or
- you are already getting Universal Credit (e.g. as in work support) when you became unwell
- you are coming to means tested benefits for the first time, in which case your new claim will be for Universal Credit (UC)
There are added choices and complications though if you are getting any of the “legacy benefits” e.g you might have been claiming tax credits and Housing benefit in work before becoming unwell or perhaps been receiving benefits when not working. You may then face a choice between:
- staying with your legacy benefits (and having them adjust to your new circumstances) or
- waving goodbye to them permanently and switching over to Universal Credit.
While you will have to switch to UC at some point, the “how” and “when” you do so can make a big difference as to how much UC you end up with. So do get advice on your options before claiming UC, as there is no going back once you make the claim.
For more details of old and new benefits please see:
For more details about Universal Credit please see:
Steps after a cancer diagnosis
Everyone’s experience will be individual and there is a whole range of different issues and scenarios. However, purely as a way of illustrating how and when the different benefits work, I am going to follow a not uncommon experience of : diagnosis, going through treatments and gradual recovery and thoughts of a return to work. Your pathway through all this may be very different though, but I hope the general trip through how benefits relate to stepping out from and easing back into work can still be useful.
So, the steps I will look at in describing the benefits and how and when they may kick in are:
- in the run up to diagnosis
- that weird time after a diagnosis, when you might be awaiting more tests, treatment plans and exploring ways of working through
- during treatment when you may need to take some longer-term time out
In Part 2, I will focus mainly on recovery and easing back into work and how benefits can still support you while you pick up earnings and after that.
Step 1 : In the run up to diagnosis
What you may find happening:
You may have been working normally right up until diagnosis, if symptoms were not too troublesome, but just something not quite right or , a lump worth checking out.
Or you may have been experiencing more symptoms and needed to have taken time off sick in the run up to diagnosis.
Effects on earnings and benefits
You may have just needed a bit of time out to attend hospital appointments within a normal working week or you may have had some short spells of sickness.
If you are employed
Then help might have included:
- time allowed in work time for medical appointments
- some short-term sickness covered by your employer’s sick pay scheme.
The legal minimum that most employees are entitled to is Statutory Sick Pay (SSP), from the fourth day of sickness absence. SSP is paid at £94.35 a week (at April 2020/21 rates). Some schemes might pay full pay initially and you may not even know this includes SSP unless you look carefully at your wage slip
If you just get SSP then you may be entitled to some top ups from means tested benefits depending on your financial and other circumstances.
If you are self-employed or not entitled to SSP:
You might mistakenly believe that benefits do not apply to you, but they do:
- time to attend appointments will just be hours lost to the business, and you might draw on savings or the business, to cover lost earnings
- if you need to take some short-term sickness, you can’t claim SSP - as you don’t have an employer to claim this from. Instead, you can claim Contributory Employment and Support Allowance (C-ESA). This starts at £74.35 a week, but may increase later.
- However, C-ESA won’t pay anything for the first week of sickness, but do put a claim in if there is any danger you think you might need more than a week or make a backdated claim in hindsight. See the linking rules below.
- You may get income-related benefits either instead of C-ESA in those first days or for longer if you are not entitled to C-ESA (e.g. if you do not have enough National Insurance contributions). Or as a top up to it.
Income related top ups:
Unlike SSP or C-ESA, your eligibility to means tested benefits – whether under the legacy or UC systems , depend on other income you and any partner may have coming in and any savings (joint if you have a partner .
The basic amounts for a single person in means tested benefits are similar to SSP and ESA, but they also contain extra amounts for: e.g. a partner, dependant children, help with the rent and in certain circumstances where an extra premiums or elements that may apply.
Step 2: After your diagnosis
What you may find happening
In some ways nothing will have changed from the day before; but in so many ways everything has. Those of us who have had the shock of having the “C” word used both in front of us and about us, share that common experience of crossing a line; cancer is no longer something that happens to other people.
It can feel like a time of shock and uncertainty as further tests and scans establish more about what’s happening and treatment plans developed. You may be riding quite an emotional roller coaster at this time, from hopes and any initial re-assurances offered to fears of the worst.
It can feel very different for the person receiving the diagnosis than for those close to them. You might feel strangely calm or your mind may be racing all over the place. This could be a time when:
- Work may feel a welcome distraction and a bit of normality and you go back to work; or
- Or a time when concentration issues and the turmoil makes work very difficult and this may now be a time to step away for a bit.
Either way, you might be looking at issues of how your work sick scheme may work should results suggest some longer term sickness ahead and what flexibilities there may be around working through treatment or easing back into work afterwards. So much of that will depend on the nature of your work, potential for a project to work on, from home or the creative imagination of both you and your employer as to how that might work
Now, for some cancers, it may be betterto leave off treatment until the right time. You may go on a “watch and wait” regime with regular check ups and tests until a time for treatment is reached – if any is needed. The issues for work will depend on what effects you are feeling from your cancer: to carry on as before, look at adjustments to alter times and what you do or you may need some time out to adjust
Earnings and benefits:
- This may then be the first time that you need to go off sick, which will initially be just as it was for short spells off before your diagnosis .
- Or it may be a time of carrying on in work - with normal pay - until more is known about your cancer and treatment options are explored and plans agreed.
- If you are looking at ways of working on through treatment, then the benefits issues are similar to easing back into work that I will look at in Part 2. Please do read on here though as it the further story in benefits might still apply.
Step 3 Going through surgeries and treatments
What you may find happening
The pathways after these weeks of uncertainty may be very different: from watch and wait through to surgeries and treatments with curative intent . For some it can be news of an advanced and potentially life limiting cancer, although the majority of people survive their cancers and increasingly so.
Many people , while disappointed to find it’s not all been a mistake, do tell me that whatever the news it is at least something to plan for and get stuck into, rather than the uncertainty of that immediate post diagnosis time. Main treatments might involve a combination of :
- surgery – which may feel more defined in time out in terms of time in hospital and expected recovery at home
- radiotherapy – around the immediate area of your cancer – e.g a month of daily weekday treatments
- chemotherapy – often by an infusion but possibly taken orally – e.g. six three-week cycles
You may just have one, a mixture, for very different time periods and in different orders. And how any particular treatment will affect you may depend on many things: the dosages, the target area for radiotherapy, the kind of chemo and what effects can go with it, your general health and your individual reactions and toleration of treatments. Your cancer team can give you a fair idea of what you might expect and there are many ways to ease problems that may occur and to adjust dosages.
Earnings and benefits
Working through treatment
Your clinical team can give you advice about whether that might be feasible. If it is then you might want to plan this with an employer or in how you might be able to do some self employed work. This can raise the same issues as easing back into work, in that you might need to consider reasonable adjustments to workload, hours and how you do them.
So do read on to cover all the benefits that might help in doing this and into Part 2 as to how these benefits can support you when some work may feel doable, even if not to your usual time. It may work out as you hope for and plan or you may find it’s a bit too much and you may need to step away from work for a bit.
For now , and just for illustration, I am assuming that this could be a time when any initial short term sickness absence you have had before, may now need to be a bit longer term: How might support from work or benefits change? And what happens when?
Sick pay from work
If you are employed:
then you might want to check out what happens under long term sickness absence, as you may have never had to be sick before or only been familiar with absences for a few days at a time:
- Statutory Sick Pay (SSP) will carry on for up to 28 weeks, but any past periods off sick within 8 weeks are linked together, so as you enter a longer term sickness period you may have rather less than 28 weeks entitlement left to run
- you may well have additional contractual sick pay entitlements over and above the legal minimum of SSP. For example, more generous schemes may offer six months full pay and six months half pay, though again past periods may be linked (using the SSP rules). A very few schemes may extend beyond this in time or payment levels., so do check.
- you may also want to check the sickness policies in terms of what ongoing contacts to expect and procedures involved in long term sickness from review sessions to popping in – when well / safe enough for “keeping in touch” days
If you are self-employed:
- you may have taken out your own insurance cover to offer an income when unable to work. To keep the premiums affordable, you may have gone for a waiting period of say three or six months absence before these might kick in, so it could be useful to check. But also see benefits below
- any SSP carries on until week 28 (but including any linked periods of sickness). You should get a letter notifying you a month or so beforehand of when the last day of SSP will be.
- you can then start up a claim for Contributory Employment and Support Allowance (C-ESA), claiming ahead so that it is all ready to kick in from from the day after SSP stops. and can do so in advance, so everything is in place
- you can receive C-ESA regardless of any ongoing contractual sick pay your employer may continue to pay on top., so in many contractual schemes a claim for C-ESA can come at a good time to cushion the drop from full pay to half pay.
If you are not entitled to SSP
e.g. if you are self employed or were not in paid work before your cancer diagnosis:
- you may have claimed C-ESA already and it carries on or you may need to start a new claim now
- if – with hindsight you think should have been claiming before – you can backdate for up to 3 months.
- if you do not have the right National Insurance contributions, get advice: you may be able to backpay contributions or be treated as having paid ones not due yet.
- If you have claimed ESA in the previous 12 weeks then these are also linked in a similar way to SSP . That means that you don’t have another week with no payment on each claim
Means tested top ups
It is worth checking up on means tested top ups. If you have been getting these before they may adjust to pay more, especially if the amount of financial support from work might taper off.
- for almost all new claims , the top up to SSP/C-ESA would come from Universal Credit. If you have been getting UC it carries on as you switch from e.g. support in work to support when unwell
- If you have been getting legacy benefits, you may need to get advice to compare how these can adjust both while off sick and when easing back into work. Current legacy benefits might well be able to adjust, but you can’t usually apply for a new one, but would have to switch to UC instead to fill the gaps. But do get advice first
- If you have been getting Working Tax Credit when in work, that can continue for up to 28 weeks with you counting as a worker for but temporarily off sick. At that point, WTC drops out of the sums, but any Child Tax Credit carries on. Amounts from tax credits can be adjusted, but are based more on your new likely annual income, rather than your income right now.
You can adjust within the benefits you have, but the legacy system often involved claiming one of the other legacy benefits as circumstances changed. But usually you cannot start a new claim for a legacy benefit. You then have a choice to continue with legacy benefits or switch permanently to UC, but get advice as to which is best in your case before making any UC claim.
Assessment of sickness
At first for SSP, C-ESA and means tested benefits, your sickness from work is based on your GP’s say so in Fitness for Work Certificates that you submit to work or Jobcentre Plus.
But your continued eligibility for ESA and to be treated as unwell within Universal Credit depends on a Work Capability Assessment, common to both benefits, so you don’t have to do it twice.
That WCA involves you:
- receiving a self-assessment questionnaire (either an ESA50 or a UC50) soon after starting an ESA claim or submitting a sick note/lines to UC. This seems long with may boxes about how you are affected in different tasks.
- However if you are “awaiting, receiving or recovering” from cancer treatments then you only need to complete a few pages and get a tear off form at the back completed by a doctor or cancer nurse, to automatically pass the WCA.
- Others though may need to complete this form in full and then attend a “face to face” assessment session, as part of a full WCA assessment process.
The end result is a decision as to first whether you can stay with ESA / continue to be treated as unwell by UC and b) which of two groups you are allocated to:
- If you are “awaiting, receiving or recovering from cancer treatments” at the time of your WCA, then you will usually be allocated to the ESA Support Group, and will receive an extra ESA Support Component worth £39.20 ( at April 2020/21 rates) , but only from week 14 of your ESA claim.
- Within UC, this group takes its name from the test used to determine if you fit into it – i.e. the UC Limited Capability for Work Related Activity (LCWRA) group. The LCWRA element that is added into your UC sums is more than ESA’s Support Component – at the equivalent of £78.70 a week. This time the wait varies a little from 11 to 17 weeks from first reporting a sickness issue.
These are likely to be worth looking into for anyone affected by cancer. There is no guarantee that you will qualify for them because of a cancer diagnosis, as it all depends on the level of difficulties you experience because of your cancer, the treatments and any other health issues.
If you are on a watch and wait regime and not experiencing that many “disabling effects” then these may not apply. Nor if your treatments are going to be for a relatively short time, if recovery goes reasonably well. There is then none of that automatic qualification for the sickness benefits for “awaiting, receiving or recovering from cancer treatments. It rather depends on an individual basis as to what the treatments are, how they affect you and for how long?
But it is always worth checking out any potential entitlement with a Benefits Advisor as there are none of the barriers of savings, income, national insurance contributions nor whether able to work or not of other benefits.
The one for people of “working age” is Personal Independence Payment (PIP). This will become Disability Assistance (for working age people) in Scotland. The basic criteria will be identical, but the aim is for the DA claiming and assessment process to be far kinder, gentler, and more friendly. There are promises of “dignity, fairness and respect”, that PIP can often manage, but too often fall short of, as these principles are not baked into PIP in the same way. There may be much to learn from DA and advisers will be pressing for such treatment in the other UK nations too.
PIP and DA can be paid on top of all the other benefits mentioned so far. They are ignored as income in any of the sums for means tested benefits. An award can though trigger extra amounts – called premiums or elements – in those benefits, but much less so within Universal Credit.
PIP and DA are assessed on long term sickness – the previous three months and the next nine months. However, very importantly - for those going through the ups and downs of cancer - your difficulties do not have to be the same right through this time. They can vary hugely at every step from the perhaps more emotional and psychological around diagnosis, to lying down in darkened rooms during treatment, to slow easing but new emotional issues as you move into recovery and start to make sense of everything that has happened.
Often a good time to be filling in those forms might be in those early chemo cycles when you know how this is affecting you., which may in turn indicate that it may take a bit of time to recover. It can though be hard to know what to putting those big blank boxes on the self-assessment form – difficulties may not be so clear cut and the causes vaguer and more generalised – e.g. chronic fatigue, low mood, lost concentration in a “chemo fog” – but still very limiting . It is then well worth enlisting the help of an adviser to get it all down.
For PIP, it is likely to be followed up by a face to face assessment with a Health Professionals from one of the assessment provider companies; but this will be far less common under DA who will be more disposed to believe what you say, in a way that PIP may not always, though any PIP appeal tribunal will tend to. But a good form can help avoid any need for that.
For more details on disability benefits see :
This blog has been mainly to introduce the benefits as you need to take a step out of working for a bit, and how they change or new ones come into play if your need for sickness absence becomes longer term.
By the time you are into recovery there may have been several sessions with a Benefits Advisor at these different steps along the way, to help with changing benefits issues:
- at first it, absences for medical reasons or short-term sickness may have all been covered within familiar time out of the day or days off.
- if self-employed you might have had to claim Contributory ESA quite early on, but employees, might not do so until week 28 of sickness when SSP runs out.
- but either way, if you just get basic SSP or ESA you may want to explore top ups from the changing world of means tested benefits or adjustments in any of those benefits you might already be claiming. Do get advice if you have been receiving legacy benefits before claiming Universal Credit (UC) instead.
- claiming sickness benefits is straightforward but the big follow up forms can look rather alarming. If you are “awaiting, receiving or recovering from cancer treatments” then you do not need to fill much of the ESA50 or UC50 in, but if not then do get advice.
- If you are going to be facing any risk of longer-term side effects from surgery or treatments then do check out PIP (or DA when it replaces PIP in Scotland). Claiming is straightforward but this time the follow up PIP2 How Your Disability Affects You form needs filling in in most cases
- and after any PIP/DA award, check out with an adviser as to how that may increase other benefits. And the options for a carer to claim Carer’s Allowance (and extra carers amounts in other benefits)
So, by the end of these steps I have taken you through the accompanying benefit steps and changes that can help as earnings - and sick pay – from work start to tail off. You may be able to carry on working to some extent, but for this blog I am assuming you may have needed to take some time out. You may then have ended up:
- first getting SSP from an employer, then switching to Contributary ESA, perhaps with top ups from Universal Credit or “legacy benefits”
- seen a gradual fall off in sick pay from work and a change in any benefits you were getting before your cancer diagnosis
- gone through a Work Capability Assessment for ESA and UC purposes
- claimed and been awarded PIP or DA
But as you enter quieter times of recovery, you may now be looking towards how – when health allows – you might ease back into work. So, in a shorter Part 2, I will look at how:
- you can start doing some work while still claiming ESA or still being counted as sick by UC
- you can carry on receiving PIP (or DA) even when back into full time work
- legacy benefits and UC can support you when you leave ESA behind, but are perhaps still needing some support if your work is low paid or you are not going to be up for full hours for a time.
So, it is back to work for this blogger to bring you all this and more in Part 2
Useful links and further reading
- Macmillan Work and Cancer pages - with different options from the perspective of employers, employees, the self employed and health and care professional pages
- DWP: How to claim ESA and How to claim new style ESA step by step guide
- DWP: How to claim PIP
- DWP: How to claim UC
- Citizen's Advice: Universal Credit ,
- Citizens Advice: Sick or disabled people and carers
- HMRC: How to claim tax credits and more information on them
- Citizen's Advice: Tax Credits
Other blogs in this series:
- Part 2: Easing back into work
- Part 3: Working while being a carer - (link to come when posted)
Other useful Benefits Blogs
- Late effects and the full sickness assessment
- Renewing disability benefits in recovery
- Universal Credit issues for sickness and carers