Variability, disability benefits and cancer

Thursday 31 October 2019

In Part 4 of a series on the  disability benefits, we look look at how all three of them - AA, DLA and PIP - can struggle with the sheer variability of the difficulties that cancer and its treatments can bring. We look at  how the assessments used disability benefits deal with this "variability" , whether:  during a typical day, between days in that week or when very different things are going on at different steps of that year after diagnosis and treatment. 

Welcome to fouth  part of our look at the very useful, extra disability benefits and cancer: Attendance Allowance (AA) is the most ancient and venerable, Disability Living Allowance (DLA) was  a variation of AA for those who first claimed below "pension age" while  and Personal Independence Payment (PIP) is the new rather different benefit that is replacing DLA for those of “working age”.

  • In Part 1 I looked at why these benefits are so important, the difference between them and how the difficulties that come with cancer might relate to the very similar tests for Attendance Allowance and Disability Living Allowance
  • In Part 2 I  looked more closely at the new kid on the block, Personal Independence Payment (PIP); both its troubled introduction and its rather different points based criteria. And the importance in the often grey areas of cancer related difficulties of remembering to think not what you can just about manage, somehow if you pick your moments , but what you can do reliably at your worst point on a typical day
  • In Part 3 I  looked  at how to relate those difficulties with PIP's "points make prizes" grid of 12 activities each with a set of differently scoring descriptors  difficulties, with a run through its grid of 12 activities and some examples of likely difficulties and how they may score against the PIP descriptors. 

Now in Part 4, I take a look at how all three benefits, which all take a long term view of your difficulties deal with the fact that the "disabling effects" of cancer and its treatments can feel so variable. On any one day, you may have good and bad parts of your day, and there will be both good and bad days within the same week or so (e.g. within a chemo cycle) . Looking longer term, over the several months to a year that these benefits assess you for, you may be going through some very different stages, each bringing their own set of possibly very different challenges. 

So how do benefits that assess things over a longer term deal with all these ups, downs and changes?  The numbering picks up from last time... 



5.  Variability for AA, DLA and PIP

But what if the answer as you face either an AA or PIP form is “Well it varies?” And with cancer, the difficulties you experience often do. This might be on any given day both, between different days of the week or e.g. between different days or weeks in say a chemo cycle or at different stages of your cancer journey e.g. The world turned upside down after diagnosis, the more total wipe-outs during treatments, the period of slow  recovery from side effects, and the hoped for journey into recovery but with potential late effects that we will explore more next time


5.1 Variability during a typical day  


AA, DLA Care and PIP Daily Living

Attendance Allowance and DLA Care focus more on  the pattern of difficulties over the day or during night, so an award is based is more how you are over the whole day. 

  • During the daytime, it may be that most of your difficulties are to do with getting going in the mornings or around getting ready for bed, but as long as there are some difficulties scattered throughout the day (e.g. moving around, taking medication, eating or getting to the toilet), then you might meet the daytime conditions. 
  • By night, any difficulties count for more as both you and any entirely theoretical potential helper might normally hope to be safely tucked up in bed and catching up on beauty sleep. So, a single reasonable need for help for 20 minutes or a two or more much shorter periods could be enough to meet the nigh-time condition.  
  • The award then is based on whether you just meet the day or just meet the night time conditions (DLA Middle Care / AA Lower) or whether you meet both DLA Care Highest, AA Highest) . It was only if difficulties are only needed for just a part of the day – e.g. an hour in the mornings -or just a separate cooking test applies – that help from DLA Care only was confined to a third lowest rate. 

For AA and DLA, then it is not about whether you could do with help at a constant level over a day, but the pattern of needs to meet the daytime or night-time criteria.

For PIP Daily Living it doesn’t matter for how much of the day you could do with a hand or verbal support; rather PIP t is simply concerned with your points score for that day. So, if at any time during the day you could do with a hand, encouragement or someone keeping an eye out when you are doing a PIP activity then you score the relevant  PIP points.

So unlike AA and DLA, the measure is not the pattern of needs over a day or night but rather, the severity of that need at your worst point during a typical day. So, if everything feels really rough and difficult at a particular point in the day ( be that e.g. on first waking or later in the day as the effort of doing things takes its toll) but at other points in a day, things seem a little easier, then it’s that worse time that counts. Or put another way if a PIP descriptor applies at some point during the day it counts as applying for the whole day.

So that means:

  • Someone who has difficulties for only part of the day may not have a lowest rate to fall back on as under DLA Care, but depending on the level of those difficulties may find it actually easier to make the jump to a higher rate – if they can score the necessary points – than they might have done under DLA
  • And under PIP it doesn’t matter whether or not you experience difficulties in the daytime or during the night. Some people switching from DLA might lose as there is no special additional weight attached to night time difficulties, while others may gain if their difficulties were only during the day,  but at a more severe level. 


DLA and PIP Mobility

DLA Mobility tends to focus on the difficulties you have when you are out of doors, rather than any spread of time. So, if you decide to go for a walk, how restricted are you taking account of the distance, manner and speed of walking? Or why might you need somebody with you in an unfamiliar place?

PIP Mobility follows the same reliability test as PIP Daily Living so potentially pays more heed to times of the day when you just wouldn’t venture out because your walking is so restricted, or you feel you would need company on a journey. And PIP should be readier to look at what you can do repeatedly. As with PIP Daily Living, it’s the descriptor and score at the worst point of the day that applies for the whole of that day.


5.2. Variability between different days

But difficulties can vary across days in a week or during different weeks in a chemo cycle or at different points in the cancer journey given that both benefits are looking at long term needs. ? What then?

AA and DLA take a rough and ready approach across any recognisable cycle. That might be days within a week if that was a regular pattern or for example over a three week chemo cycle. There might be days when you are feeling as weak as a kitten and as dull as a brush, and others when you are feeling almost fighting fit just before your lovely clinical team start the next dose. And perhaps, on the majority of days, you feel somewhere in between.

Roughly, then, for AA and DLA it’s about how you are the majority of the time, but with some room for a common sense overview rather than precise arithmetic – how would a reasonable observer sum your difficulties up?

PIP has more precise rules when different descriptors might apply on different days:

  • if one descriptor applies for more than 50 % of days that’s the one that counts
  • if two or more apply for over 50% of the time, (perhaps sometimes on the same days perhaps on different days) then it’s the highest scoring that counts.
  • if no single descriptor applies for half the time, but a combination of descriptors do apply on more than 50% of the days then it is whichever descriptor lasts the longest that counts. 

But with a claim during that first year after diagnosis it's not just a matter of a typical week or a recognisable, regular chemo cycle. Your difficulties may well vary within those times, but that typical weeks might look very different during say chemo than in the anticipated gentler times as you move into recovery.

So how do these three benefits – which all need to be assessed over the longer term between 6 months and a year -  cope with that? 



6. Taking the long-term view 

Variability isn’t just an issue on any particular day or between different parts of a chemo cycle, as we considered last time (under 5.2 and 5.3). All three "disability" benefits look at things over the longer term, which may take in several different periods in your cancer journey.   


6.1 Steps through cancer treatment

Everyone’s cancer journey may be quite different – the type of cancer, the stage at diagnosis, the surgery and treatments involved, your health and tolerance of the treatments and the resources available to you: personal, financial, support networks.  

But let’s take as an example a lady who pops up next time in a DWP case study, whom they call Vera. In this blog, I suggest some of ther backstory ogf going through the not unuusual surgery and treatment  that many people experience in that first year after diagnosis. For example, Vera's difficulties may well have fluctuated during a day or between days as above. But also the whole pattern of her difficulties and those weeks may feel very different at different steps along the way, especially in that first year or so after diagnosis 

She has been through a not unusual treatment regime and journey that goes with breast cancer. Vera then migh have gone thorough:  

Pre diagnosis 

Vera may not have experienced many symptoms or difficulties, but just come across a lump. Or she may have been experiencing general tiredness and low energy,  and a feeling that something was up. Or possibly been getting very anxious and concerned


Immediately after diagnosis  

Physically nothing has changed, but emotionally the whole world has turned upside down. A rollercoaster of hopes and fears runs wild, as Vera gets used to the "C" word in her life and tests and scans are done to find out more.   


Surgery and change:

Things may start to settle a little into a new weird normal as the diagnoses are finalised and treatment plans emerge; a fightback to focus on might replace fear of the unknown. But then comes physical difficulties post-surgery and the emotional impact of bodily changes.  

18 weeks of chemo :

Then may come the rollercoaster of chemo cycles; some side effects may have been anticipated, some seem rather strange. The impacts can vary considerably from person to person, but for each a series of cycles from the depths of chemo nadirs to almost back to normal just before the next dose, but perhaps with a bit of a general downward trend as impacts on both any cancer cells and you get a bit cumulative.  



Perhaps after a brief spot of recovery from the chemo, Vera has a few weeks of radiotherapy, targeted at the site of the cancer. Vera might get localised soreness, and tiredness from a controlled dose of radiation sickness  


Post treatment recover

Side effects may well actually peak after the treatment has stopped, but then start to gradually ease, but it can take a while for the effects to totally clear your system  


Late effects further into recovery– 

After the immediate side effects of the main cancer treatments have eased off, Vera might continue to experience some long term effects. Some people can quickly feel almost back to normal, but others may experience "late effects"  for some time afterwards – less the hoped for "back to normal" and more perhaps  as getting used to a "new normal":

  • physical effects such as arm weakness or lymphoedema on the surgery side, breathing issues if radiotherapy has had an impact on the lungs, chronic fatigue or peripheral nerve damage
  • psychological and emotional impacts It could be only now in the quiet after the excitement and courage mustered to endure the treatments,  that there is time to take it all in. Anxiety, post traumatic stress and depression can kick in
  • continuing treatment (e.g. tamoxifen, Herceptin) may have some side effects (though hopefully less severe ones than before) 

These are all possible impacts, so please don't think you will experience them all or to any great degree. Impacts vary considerably from person to person and should you get a hard time, there is a lot that can be done to help reduce and manage them .  

6.2 The importance of late effects in disability benefit decisions. 

Late effects are more long term impacts than the immediate side-effects of treatment. During treatment you may be gritting your teeth and focussing on "getting back to normal". And many people make a full recovery with minimal ongoing effects, although going through this journey is always to some extent life changing.

Late effects then carry on for longer and after after any chemo or radiation has cleared your system.  Some may take a bit longer to start to ease off, others may be permanent or semi-permanent. You can read more about them in Sue's blog here. 

They are important in two ways they relate to the disability benefits:

  • in your initial claim  the possibility of late effects is worth mentioning, to help overcome any concerns that you may not have difficulties for long enough to qualify. 
  • if you are looking at a renewal claim, well into recovery, then the whole claim will be based on the "late effects" of your cancer and its treatments (as well of course of any other health conditions that get in the way of managing the disability benefit activities. 

Later in this blog, I am particularly going to be looking at late effects and whether a disability benefit awarded in that hectic year of diagnosis and treatment, may be helped by pointing out that it may not just be about getting over the immediate side effects from treatment. 

Next time , and without wishing any late effects on you,  I will look at how your award might be renewed  – even if perhaps at a lower level –  as you settle into that longer term recovery, perhaps in part because of late effects that you might experience. 


6.3 The challenge for disability benefits

The challenge for all three disability benefits is that they need to take the long term view of someone's difficulties. So in each of the stages above, Ver's range of difficulties with daily living and getting around may feel very different. In theory, each very different set of challenges might need to be considered separately in reaching an AA or PIP decision. Fortunately common sense prevails , and Vera doesn't have to fill in a whole new set of forms every time she moves from one stage to the next. 

In fact she couldn't even if they wanted to because awards are based on effects being expected to last for some considerable time ahead. If they might not last for long enough, you may not get an award at all. The challenge for the disability benefits,  is that all three of these benefits are meant to take a long term overview; they can’t just make a higher award during the trials and tribulations of chemo and perhaps reduce the rate at later steps along the way.  

So how long is “long-term”?

  • for some people claiming under special rules for advanced and potentially life-limiting cancers, the issue of the disabling effects and rules about how long they have lasted and are likely to last are irrelevant. The award is made for 3 years at a time, based on medical certification. 
  • but for the majority of people with cancer who claim under the ordinary rules, the award is based on those disabling effects , with rules looking at how long they have lasted and might last.


6.4 Looking back – the last 3 or 6 months  

Under the ordinary rules, both DLA and PIP need you to have had sufficient difficulties for 3 months before they can start making a payment. And Attendance Allowance need you to have experienced qualifying difficulties for the previous 6 months. You can apply before that time is up, but any benefit doesn't become payable until you have had had difficulties for at least this "qualifying period".

So, when Vera was first diagnosed, she may not have experienced many day to day restrictions or difficulties. She also doesn’t really know how the treatments are going to hit her, though her clinical team have been able to share some of the common impacts to be ready for. 

The best time for Vera to be filling in forms about how things affect her,  might be when she has settled into her chemo cycles and can know how she is finding things . She might then want to start up her relevant claim start her claim a little before that period, so as not to miss out as you can't get payments for any time before the day you first contact the disability benefit concerned: 

  • for AA and DLA (for children) , your phone call leads to you getting a claim pack with all the boxes to fill in but with six weeks to return that form
  • for PIP you give a bit of information to start off the claim, but get sent a seperate PIP2 How Your Disability Affects You form some 2 to 3 weeks after. You have 4 weeks to fill that in. 

The main part of her form might be in describing how chemo is impacting on her. However, under further information she can look back a to explain briefly  how things were in the previous stages: initial symptoms, wanxieties and stress after diagnosis, after surgery. Not in as much detail but enough to suggest that she may have been experiencing some difficulties for a while. When asked for a date as to when difficulties began, Vera might want to put down a date when she first noticed some issues, even if those were very different from what she is experiencing through chemo. 

Often disability benefits will agree that there probably were some difficulties for that qualifying period before Vera makes her claim, so that any award can be paid with effect from the date that she starts her claim for a disability benefit.  

6.5 Looking  forward  – the next 6 or 9 months  

Those side effects  might also give her and her medical team an idea of how things may be for her during the rest of the treatment regime, and as those side effects carry on beyond the poinrt when treatment stops. It may also give a sense of what she might expect in longer lterm late effects. 

Some reference then to the fact that it doesn't all get better the day after treatment is impoortant too as disability benefits also have a "forward test" of time during which you might be reasonably likely to experience difficulties. There isn't actually a rule for Attendance Allowance, but whereas DLA looked ahead for 6 months, PIP is looking ahead for 9 months. However some sense of this being a long haul is important for all three benefits (not just to get over any minimum length of time (as in DLA and PIP) but also in setting how long your award might last for. 

So to some extent, Vera may need to look beyond her current treatment tribulations and to look at – or at least point out – that there may some potential difficulties into recovery, especially with PIP. That is a bit harsh when she might be looking forward to as sppeddy and full a recovery as possible. She may well get that and does not need to dwell too much on what may or may not happen. The point is that disability benefits may need to be reminded that it is a bit of a long and potentially rocky road. 


6.3.1.  Of Mystic Meg and  AA /DLA 

DLA’s old-fashioned vagueness and shorter time (6 months), perhaps made it easier for a Decision Maker to feel they have some room for common sense and grown up discretion.  

Vera would need to make some comment about any warnings her team may have given her to the effect that that recovery might take a while after treatment stops. She might want to mention any further plans for e.g. ongoing treatment such as  tamoxifen or herceptin  . This may help the Decision Maker  realise that it will not all be over when the chemo music stops, which is rarely for as long as 6 or 9 months.  

Crucially, though, difficulties do not have to be at the same level throughout the six or nine months minimum 

So again it is giving that sense of recovery being a long old business, even if of course Vera does not yet know how that will go. It's enough to give them some indication, then of some difficulties ahead, in case the Decision Maker forgets or has not come across an application based on cancer before. 

In the past,  a not uncommon award of "working age" might perhaps be based on  DLA Care at the middle rate and DLA Mobility at the lower rate for a year or so.  After that it was felt reasonable to see how someone would be getting along by inviting them to apply again, if they were still experiencing sufficient difficulties . 


6.3.2.  Of the snaggle toothed soothsayer and PIP

For PIP there are extra challenges. For a start PIP looks nine months ahead, rather than six months, by which time Vera would be expecting to be that much further into recovery, with her difficulties potentially easing that much more. The balance between time in chemo and time in gentler recovery later on could change

The other issue for PIP other difficulty is the more detailed and precise rules for that balancing act. PIP looks at point scores and applies those rules across the 12 month "assessment period" (i.e. 3 months before the claim and 9 months after). And where these vary, PIP has those more precise rules as to which descriptor should be applied (as mentioned above)  

In theory, then, a true perfectionist/jobs worth could want to establish different descriptors/point scores for different times during these months to decide both whether the "nine months" ahead was met  (to allow any award) and to work out which points should apply across the period (for the amount of that award).

It's a shame that in borrowing so much from the Work Capability Assessment process used in sickness benefits,  PIP didn't also take on  the idea someone being "treated as"  as meeting the test while awaiting receiving or recovering from the main cancer treatments. The sickness benefits then have a way of bypassing the test - and issues of variability over time, altogether. 

In practise , that would be very difficult to achieve, needing a lot of work by Vera, the assessor and the Decision Maker to get at this rather strange and artificial rulebook "score" .  On the whole most PIP Decision Makers take their sterr from DLA experience and common sense : that Vera is in for a rough year of it. Technically, there could be times later on when not enough points could be scored, but they are not usually going to go there.

If you do get a decision based on difficulties being unlikely to last long enough, then do get advice. It is highly likely to be challengeable. 

It is though perhaps even more important to emphasise that it is likely to be a long haul with only a gradual easing off of those immedaite side effects. And that, it could well be possible that "late effects" may mean that you need to renew that award. 

It seems then that PIP is applying common sense on the whole making awards for 2 to 3 years. The reason why they can be longer than DLA is die to the rather different way in which PIP awards are renewed. PIP though does seem to be less willing to award Mobility than DLA was. 



And so:

  • The variability of the effects of cancer can make you wonder what to put on days when how you feel can change so much or when you have good days and better days in the same week. The fact that having difficulties for part of the day counts for the whole day and that there are rules to deal with fluctuations in the same week or month, can all help.
  • The long term nature of the assessment and award means an added complication comes from the fact that the whole pattern of difficulties and ups and downs, may be very different at different stages and over the minimum time needed for an award. AA and DLA have coped because they have a certain built in sense of overall likelihood. PIP shares that, but advisers were very nervous at how PIP could potentially tackle such a changeable period as that first year after diagnosis. But fortunately common sense has usually prevailed...
  • Without having to turn into too gloomy (or detailed) soothsayers of doom, nor abandoning real hopes for a rapid bounce back, you probably do need to remind AA and PIP that there could be a rather longer haul ahead than just the length of time for receiving treatment and immediate recovery from side effects.
  • The possibility of   "late effects" may need to be stressed, to help your initial claim, even if you may quite rightly hope that you won't experience too many. But as we will see next time, while you may well hope to be able to bid your disability benefit a fond farewell at renewal time, those lower level, mustn't grumble, just have to put up with it, "late effects" might justify a new award too. 



Next time…

In Part 5,  I will move beyond the rapid changes and tricky rollercoaster of that first year or so after diagnosis, where with some attention paid to variability , you may well have had a disability benefit awarded. It is never guaranteed and is not automatic because of a cancer diagnosis, but if you should get turned down do get advice.; 75% of PIP appeals, for example are successful.

But as well as that tricky rollercoaster of that first year we will look at how often short awards of these benefits might be renewed in the perhaps quieter times of recovery. “Late effects” can still present real physical and emotional and psychological challenges, even if the news around your cancer is seeming more optimistic. It could still be the case that you would still qualify – and even if you might be back in work – as we will see with a DWP case study of someone five years after surgery and treatment for breast cancer.  

Late effects will be important then, for any renewal claims, but may also have a part in those first initial claims too. And we will link into a separate blog from our Cancer Support Specialist looking at what “late effects” actually means. 

For one to one individual support, drop in and see the Benefits Advisor in  your nearest Maggie's centre. Or try some of the other suggestions in the "links and further reading" below. 



Links and further reading


Related blogs on late effects

More about late effects - from Sue our Cancer Support Specialist - in Long term side effects

Late effects when Undergoing the full Work Capability Assessment- often for the first time for  "sickness benefits"


Other blogs in this series:

  • In Part 1 - introducing disability benefits and a look at AA and DLA claims for cancer in particular - here
  • In Part 2 – a look at how PIP works in a very different more points based way - here
  • In Part 3 – PIP points and cancer difficulties - here
  • In Part 5 -  Late effects and renewing a claim in recovery - here


External links

  • Citizens Advice – a general guide to filling in the PIP 2 form linking to lots of other information about PIP - here
  • Disability Rights - A guide to making a PIP claim - here


Other benefit blogs you might like to view:

  • Benefits when too unwell for work -  "sickness benefits" are also based on health limitations, but this time about "limited capability" for work to provide a basic income when not earning - starting here
  • Benefits and Cancer : An overview -  see how disability benefits fit into the overall benefits system and how to ensure you get your maximum entitlement - starting here
  • Means tested benefits - how an award of disability benefits can lead to extra amounts in legacy "working age" benefits
  • Pension Credit and extra help after an award of a disability benefit  - here


Getting face to face help from an adviser

There is an art to getting over all the relevant difficulties if you need to complete the full assessment questions for any of these benefits. This series of blogs will help you understand what they are looking for, but you may want to get face to face help from a benefits advisor to tackle those big blank boxes :

  • visit your local Maggie's Centre  and talk with one of our benefits advisors. Find your nearest 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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