'Late effects' and renewing disability claims

Tuesday 18 September 2018

In Part 5 of a mini series on "disability benefits" , we look at how "late effects" into recovery can  play a part in both that initial claim for any of the disability benefits - AA, DLA and PIP - both in that year of diagnosis and treatment  and in renewing your claim during recovery, even if you are ready to ease back into work.  .  


Welcome to the fifth part of our tour of those vital “disability” benefits and cancer. Please see in the links to see the other parts. As well as completing the series, it is also a bit of a joint project between a Maggie's Benefits Advisor and a Cancer Support Specialist, as as we take a look at the impact of "late effects". Please, then  see  Sue's blog - available via the links below on more about late effects

In this series so far - see links below to get to those earlier parts: 

  • In Part 1,  I looked at - with some help from my predecessor - at  why these disability benefits  are so important and , the key differences between them. And we took a closer look at very similar criteria for Attendance Allowance (AA) and Disability Living Allowance (DLA) 
  • In Part 2 – we 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 of thinking not just of what PIP activities you can manage, but what you can do reliably 
  • In Part 3 -  we ran through the PIP points and looked at likely difficulties. 
  • In Part 4 - I then stepped back to see how all three benefits deal with the sheer variable nature of may of the difficulties associated with cancer - whether on any given day, during a week or so and at very different stages of recovery. 

Here in Part 5, I look ahead to those hopefully gentler times of what may be quite a long term recovery, which may include getting to grips with some "late effects" from cancer and its treatments. These should be far less hard hitting than the rigours of treatment , but they can still be limiting. They may also come with the added disappointment of not quite bouncing back to normal as hoped and may involve a bit of an adaption towards a new normal. That said "late effects" may well not be permanent, but may take a frustratingly longe time to ease or get heads round. 

In part 4 we saw how at least referring to the possibility of late effects - while wishing for them to be very few and far between in practise, is important when you make an initial claim for a disability benefits. That's because the claims are based on a long term assessment. You don't want PIP for example getting the idea that you will be as right as rain after the chemo stops, but to take on board that warning that you might as well write the next year off. 

Hopefully then you will have got a fair award, but perhaps for a short time, but long enough to take you well into recovery. Now given all the difficulties of getting that initial award with a form full of thr trials and tribulations of treatment, you may wonder will you stand any chance with a new claim based mainly on less dramatic late effects.? The answer can indeed be yes, as we see in the DWP case study below. 

You may be moving back into work - or may even have done so. But disability benefits can be paid even if you are back earning full time. It is down to whether you still have sufficient disabling effects to quality. And it's the same if you have retired - you may still be entitled to carry on with a disability benefit, well into recovery from cancer and its treatments

There is a similar issue of a re-assessment for sickness benefits too. Those are the benefits for people of working age who may still be too unwell to do much in the way of paid work, although some is allowed on these benefits. The big difference in these benefits, is that you may not have had to go through a full assessment for that benefit so far. That's because many people are "treated as" passing the Work Capability Assessment because they are "awaiting, receiving or recovering from treatment" 

For sickness benefits you may need to go through that full process for the first time, if you are still unwell during recovery. Many may have made it back into work, so that "sickness benefits may no longer apply. But if you are needing to go through that full assessment you might want to look at Sickness Benefits 4 Going through the full assessment.

Back with disability benefits

Below I take a look at what's involved in renewing your disability benefit and how you might still qualify even well into recovery or when back at work., based on your individual experience of late effects. We pick up the numbering from last time

  1. What is involved in renewing a claim? 

The nature of the process has changed a little between the older disability benefits (AA and DLA) and the newer PIP. Essentially, though, a renewal is a bit like starting all over from almost from scratch. If things were very similar to the last claim then you can ask for copies of previous forms and evidence. But the chances are you may be more into recovery and having a different set of difficulties and challenges. The main difference may be the form looks slightly different and the DWP sends it to you rather than you ringing to start up a new claim. 

In general then, you are looking at a renewal process following a short award for a year or so. You may well be making that claim based on a mix of ongoing "late effects" alongside any other health conditions. It's the  combined effects that are important and different health conditions can affect each other. eg, sometimes chemo can make arthritis flare up 


7.1 AA and DLA

These benefits make a clearer distinction between renewing your claim and looking at your claim again for other reasons:

  • renewal is when your AA or DLA award has an end date and it is time to re-apply if you thing you may still qualify
  • other reasons to look at an existing claim might be because you were happy with the original award but your difficulties may have changed since then. Or there may be new information that no-one knew at the time, a mistake in the way the law was applied to your case. Some people may well be on an indefinite award, but still be subject to a review process from time to time.

The renewal process for a DLA or AA award that is coming to an end is very similar. You get sent what looks very like an original claim pack up to 6 months before the end date of your current claim. You will soon start getting reminders to return it "or you may lose money" but you may want to stop and think - or get advice - about the best time to send the form back in your case. 

Do bear in mind that they will need up to 3 months or so to get a new decision sorted to replace your old one. If your award runs out before a new decision has been made,  then you will see a gap as your old award ends and the new one is still being decided. But as long as you get the form back before your award expires, you will get any new award fully backdated, eventually

Two main reasons for delaying a quick return of the form  might be:

  • you may feel happier not giving them a chance to end your award too early, as it can always feel a risk having a completely new assessment
  • you may still feel you are in a bit of a changing situation when the renewal pack arrives. You may have a better idea of a longer term level of difficulties a little bit later on

DLA has some added complications, due to PIP replacing it for a large group od people who would have claimed DLA before:

  • if you are still getting DLA in working age, then instead of a DLA renewal, you will be "invited" to make an entirely new claim for PIP instead. 
  • new claims for DLA are now only made for under 16s , who may get a renewal pack if still under16. But in the run up to 16 this will be a new claim for PIP. Do get advice as may young people wrongly lose their benefit at this stage.
  • if you were getting "working age" DLA and reached pension age before April 2013 - you and nearly a million others - will stay with DLA. Your award may well be indefinite, so renewals won't be an issue. But you may still come under a review process from time to time. 


7.2 PIP renewals

PIP has two ways of doing a renewal:

  • for a short award - under 2 years - they can just send you a letter to remind you to claim again about 15 weeks before your award ends. If you want to then its exactly the same process as claiming PIP in the first place
  • for longer awards the combine, renewals and all other looking at your claims again into one review process

That process kicks off around a year before your current award is due to finish. But in setting that date they often allow another year. So that's why those first awards for PIP can be longer than for AA and DLA. They may well send you a shorter AR1 form asking if things are more or less the same. However they may well not be now that you are in recovery from your treatment year, so they may not bother. Or your answers on the AR1 may indeed be that things have changed a bit. PIP will send you out a new PIP2 How Your Disability Affects you form to explain your current difficulties

There is no flexibility around returning it - they want it back within 4 weeks with a little discretion allowed if you need a bit more time. And that can be odd if you are are expecting to be in a very different position in almost a year's time. A new decision is made and replaces your old one. 


  1. How might Vera still qualify, five years on

Initially then, AA and DLA have made a rough and ready common sense award or PIP has found a way through its rule book, to make a reasonable award in that first year after treatment. Meanwhile, you are firmly fixed on getting better and are beginning to feel it, with the aim of getting "back to normal", or even towards a "new normal" (with both some restrictions you had hoped not to have or  an in some strange ways an enriched one)

So, when renewal forms drop through your letterbox is there any point? After all, I have been waxing lyrical about some of the difficulties getting that first award when the heavy times of treatment were part of the picture. So what chance are there now that the more dramatic problems are out the way, leaving the perhaps milder ones caused by "late effects" ?  

Well it all depends on what level of late effects you are experiencing , in combination with any other health issues. But don't give up on the notion of qualifying for a further award. Vera actually comes from a PIP case study by the DWP of how a PIP award could apply to a woman who was diagnosed with breast cancer some 5 years ago. So do read on before giving up on the idea of a renewal...


8.1 Late effects five years on 

In that early days 2012 document, the DWP gave a range of case studies and how the PIP points system might apply. They described our Vera thus:  

  • Vera is 58 and lives alone since her partner died three years ago. Her daughter visits often, bringing her grandchildren whom Vera enjoys seeing.   
  • She is taking long-term medication following a mastectomy five years ago; the treatment makes her feel tired much of the time and she has also lost her appetite. Since the operation her right arm has been very swollen, which she finds particularly difficult, as she is right handed.
  • She has to use her left hand to type as she wears a pressure sleeve on her right arm, which limits the movement of her arm and fingers. She sits to prepare food and has aids to help do some things one handed such as peeling vegetables.  
  • She finds it difficult to cut food sometimes and uses adapted cutlery to eat. She is able to take a shower on her own, but needs assistance to wash and comb her hair. She dresses slowly and has bought slip-on skirts and front buttoning bras, blouses and cardigans, and uses Velcro fastenings on shoes to enable her to be more independent. 
  • She can walk to the local shop and back, about 400 yards away.” 


Of course, we know an advisor might dig a little deeper to explore wider impacts not mentioned in the short summary  short summary. For example:  

  • How much is the general fatigue affecting a wider range of activities?
  • How is she coping with the emotional and psychological impacts?
  • How does she cope with getting about the house normally and support with hobbies and social activities? 
  • Does she feel fully confident in strange places or does need some support from a companion

But just taking the difficulties as the DWP described them,  Vera is very likely to get something on renewal, even five years on


8.2 If Vera had been doing a DLA Renewal  

The DWP study was particularly looking at PIP, but from experience, we can safely say that if Vera had been doing a renewal under the old DLA rules, and given the late effects being described and actively considered , then Vera would have been very likely to qualify for DLA Lowest Care at least. This would be based mainly on the restrictions with her arm.  

Vera would have qualified for this based on either:  

  • the cooking test (difficulties with the tasks in making a main cooked meal, from fresh ingredients on a traditional stove top) ; or
  • needing a hand for “part of the day” (help mainly concentrated around getting up, washed and dressed etc).

There are some other things going on through Vera’s day though – she is tired most of the time, she has difficulties at meal times both with appetite and cutting up food. These and the other potential difficulties - both mentioned in the case study and to be explored - might be enough to establish a pattern of needs "throughout the day" If so, then she might make a big leap to DLA Middle Care. 

Vera can walk too far for any DLA Higher Mobility, though it’s worth checking about any discomfort or breathlessness during that time. There may also be reasons - confidence, concentration - why she could really do with somebody with her to guide and monitor her in an unfamiliar place. If so a likely previous award of DLA Lower Mobility might have continued.     

DLA does still apply for under 16s, although childhood cancers - and treatment journeys - can be different and it may well be that higher rates apply.


8.3 And what if Vera was older and renewing  Attendance Allowance?

If Vera had been a bit older (e.g. over the current pension age of 65 and a bit)  then she would be looking at a renewal of Attendance Allowance (AA) instead. Now AA does not have an equivalent of DLA Lowest Care, for Vera to drop down to . Lower rate AA is equivalent to DLA Middle Care, so a new award will depend on making that leap into difficulties over the whole day . In that sense its a case of all or nothing. Her renewal would depnd on that wider range of difficulties - some perhaps less obvious - being accepted

AA also doesn’t have any equivalent to Mobility, so while any difficulties with getting around indoors can be relevant to the AA award (e.g.moving around the home or extra help at social gatherings) they would not lead to a separate amount for Mobility, either in her first claim or at renewal. 


8.4 And what happens to Vera under PIP?   

Some good news from PIP for once. On the whole PIP is tougher than DLA,  so you may think Vera would struggle. If under DLA, Vera might typically just have been awarded DLA Lowest Care , what chances has she got with PIP? Especially when - like AA-  PIP has  has no equivalent to that lowest rate of DLA Care?

Well, even from the limited description of difficulties in the case sttudy, Vera scores enough points for a renewal at the standard rate of PIP Daily Living. That rate is equivalent to AA lower rate/DLA Middle Care but it it is less of a jump for Vera to get there than under the older benefits:   

And that's because the PIP points way of doing things actually benefits Vera's difficulties. In their example, the DWP did suggest an award for Vera based on awarding 8 points under PIP Daily Living, drawn from the 10 activities. You can see the points system in a handy chart – see links below. The 8 points the DWP suggested were suggested included:    

  • Activity 1 – Preparing food – 1b Needs to use an aid or appliance to either prepare or cook a simple meal
  • Activity 2 - Taking Nutrition – 2b needs to use an aid or appliance or supervision to take nutrition or assistance to cut up food
  • Activity 4 - Washing and Bathing - 4d Needs assistance to be able to wash hair or body below the waist
  • Activity 6 - Dressing – 6b – needs to use aids or appliances to dress 

(NB: a note of caution; the points system changed a little since the case study was written, so wording is slightly different, but those same points would apply. )

Each of those scored 2 points, so Vera still scores a total of 8 points even 5 years into recovery. And that's focusing mainly on her arm - delving further might score her further points. The big difference is that Vera is not  constrained by the fact that these problems mostly occur at the start of the day. If a PIP points descriptor applies for part of the day, then it counts for the whole of that day. 

It could still be worth exploring other potential difficulties, in case not all the 8 points above are accepted or to add to them. Similarly, any walking restrictions need to be considered in terms of moving around or managing in unfamiliar places reliably.  PIP is really cutting back on Mobility so Vera may miss out on PIP Mobility in both her original award and at renewal time. 

While things do look better for Vera under PIP points, they look worse for the other cancer case study Mary. Neither, represent what will happen, but do show how the DWP thought it might do. Linking up with an adviser could lead to renewal awards in both cases. 


Summary of Part 5

The above suggestions of possible rates does not mean that you will definitely get an award if you identify with Vera's difficulties; nor that you won't if Mary's story is closer to your own. These are just DWP official examples of how the PIP points might work. A correct decision all depends on the limiting effects and difficulties that you experience, whether that's from "late effects" related to cancer  and/or  other health issues. But it may feel helpful to see that renewal awards are possible; and in Vera's circumstances, the PIP points system can be more generous. 

With some not uncommon late effects of breast cancer, its surgeries and treatments, Vera could qualify even at 5 years into recovery and even under a generally tougher PIP assessment. But whether Vera brings hope or Mary some doubt about renewing your claim - whether for AA, DLA or PIP - during recovery, do check with an Adviser. They can go through how your individual difficulties, late effects and other health issues can relate to AA/DLA criteria or PIP points. Please, never give up on the idea of re-applying - without talking it over with an adviser first. And the same goes, if your renewal decision is disappointing. 


Series Summary  

The three disability benefits are well worth looking into as while there is no guarantee of an award, most people going through cancer treatment will qualify. They are always an extra amount,  that can be paid to anyone who qualifies regardless of income, savings or National Insurance history. They are never taken away from other benefits and can actually entitlements to other benefits in some cases. They also  allow carer to claim Carers Allowance for helping you – though get advice on that one.  

So, AA and DLA have long been among advisor’s favourite benefits, and in time we may yet grow to love  PIP too . For PIP can do the same amazing things to finances in difficult times as its half siblings. The doubts on PIP are around its aims to cut back on DLA expenditure and its adoption of a rather different – and previously problematic – points-based processes from ESA. It will be interesting to see if changes to that  process to come in Scotland will make Disability Assistance (for Working Age People) feel a very different and more loveable version of PIP. 

For those with more advanced cancers the process for claiming whichever of the three disability benefits is straightforward, awards automatic with a DS1500 certificate and someone else can sort this out on your behalf. That also applies to ESA and rather more haphazardly to Universal Credit (on grounds of sickness)  

For most who receive a diagnosis, though, it will be the more usual process of having to go through the full assessment process:

  • In Part 1:AA, DLA, PIP and Cancer we saw how common difficulties related to cancer and its treatments might fit the criteria for Attendance Allowance and Disability Living Allowance (DLA). It can be tricky as people often sort of manage, but the test is really whether in an ideal world, you could reasonably do with a helping hand or reassuring word to better manage the tasks being looked at. We also introduced PIP
  • In Part 2:  A closer look at PIP  we explored the very different process of Personal Independence Payment (PIP), but where again it’s not a simple yes/no as to whether you can manage an activity – sort of/somehow – but whether some degree of help -even if just using something as an aid – might help you manage that activity reliably at your worst point in the day
  • In Part 3 PIP points  we looked at applying PIP points to common cancer related difficulties 
  • In Part 4 - Variability we looked at how the long term assessments for all three benefits deal with variability within a day, a week or so or acros the length of time reuired for an award. Stressing potential "late effects may be important to make it plain that difficulties may well last long enough for an award
  • In Part 5 above , we looked at renewing what may often be a short award, once you are well into recovery; how you do that and why you may still end up with an award. As before it will all depend on what effects you are actually experiencing well into recovery with any "late effects" being an important part of your renewal.

For those  who do need to undergo the full assessment, these disability benefits then can involve a bit of work and there is no guarantee of success, but an award is quite likely if you – perhaps working with an advisor - can get over the full extent of the limitations that cancer and its treatments places upon you. Not everyone with cancer qualifies for a disability benefit e.g. if you are on a watch and wait regime or only need a short course of treatment. But the chances are that if your journey is anything like Vera’s – perhaps for a very different cancer – then you may well qualify.  

All three disability benefits are seriously under under-claimed – rough estimates suggest that for everyone receiving an award, there is someone else out there who should be - so don’t miss out. 

These benefits can make the difference financially between “living and merely existing”, as they add to rather limited basic benefits to help you deal with the extra costs that cancer can bring. If in doubt as to whether to claim, or renew an award - please talk to an advisor before ruling yourself out. And they can help you with the forms and the challenging of any daft decisions. 

You can talk to a Maggie’s Benefit Advisor at any of our centres for a private discussion about how these benefits might apply in your case, help to make a claim or indeed for a full “benefits check” and help with any other claims too. You can find your nearest centre here.


Further links and useful reading and links

Related blogs on late effects

External links

  • The consultation document that featured our Vera – Case Study 8 on page 23- can be found here. NB you may also want to see Mary case study 5 on page 20. 
  • 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 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 4 -  The variability of cancer related difficulties


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:


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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