An updated version of Part 2 in a series looking at the extra ‘disability benefits” . Here we focus on the rather different points based criteria for the newer Personal Independence Payment (PIP) and its more points based and medically assessed approach, compared to the common approach taken by the older Attendance Allowance and Disability Living Allowance.
In Part 1 of this series, I updated a blog by my predecessor looking at AA and DLA as crucial benefits for making a real difference to people’s lives. We also looked in more detail at how the kinds of difficulties associated with cancer can fit into the criteria for a very useful award of Disability Living Allowance and Attendance Allowance. These have long been two of Adviser’s favourite benefits, both very relevant to people affected by cancer. You can see Part 1 and later parts in this series other parts from the links below
Here in Part 2, we are going to take a closer look at the more recent kid on Personal Independence Payment (PIP),and how we may eventually grow to love it too. We will also start to look at how to apply some of the typical difficulties that can come with a cancer journey that we looked at in Part 1 can fit into PIP's rather different assessment criteria, continuing into Part 3
- PIP – the story so far
Eventually, then, PIP will also become – however grudgingly – one of adviser’s favourite benefits too – perhaps earlier in Scotland when it comes under new ownership - , for an award of PIP will do all the same wonderful things to someone’s benefits income as an award of DLA and AA.
For like the other two “disability benefits”, PIP is:
- payable regardless of other income , savings or past National Insurance record
- paid on top of all other benefits,
- can be paid when you are too unwell to work or are back in full time work
- is not taken away from far from means tested – also known as income-related benefits at all,
- can actually trigger increases in entitlement within means tested benefits – at least until Universal Credit
1.1 The origins of PIP
The difficulty Advisors have in loving this new and troubled half-sibling of DLA and AA, is partly that PIP originates from the Government questioning the very DLA that we had grown to know and love with an overall intent to cut it back at least in working age. And partly the stress the new processes have created for often vulnerable clients, whether making their first application or navigating the compulsory switch from DLA to PIP. Early chaos didn’t help but things have settled down to a normal service now
So what begat PIP? Back in the 2010 Emergency Budget, the Government announced that it wanted to cut our favourite enabling benefit - DLA- by 20%. Further thinking as to how to do that led to the decision to partly replace DLA entirely with a new benefit . A case for reform was controversially mounted critiquing DLA although adopting some of those failings in the new benefit; it was though mainly around saving £2 billion a year compared to not making any changes.
The main change is not in the purpose or rates of benefits but in the assessment criteria by raising the bar and by applying a points based and face to face assessment model borrowed from ESA, the main benefits for sickness from work.
1.2 Which “disability benefit" applies to me?
PIP then is in the process of replacing DLA for those of “working age” DLA still remains open for new claims for under 16s, although they will switch to PIP as they approach 16. And DLA will continue to be retained by those who had claimed it while under 65 but had reached that age by April 2013. Those who hadn’t are having to apply for PIP instead of their “working age” DLA. So, the three “disability benefits now cover as follows:
- DLA takes new claims for children and young people under 16, while the 1 million or so who were on DLA but over 65 at April 2013 will remain on DLA
- PIP is for new claims from people aged 16 to 65 . Those of that “working age’” still on DLA are being “invited” to claim PIP instead.
- AA is for new claims first made after you have turn 65.
So, for new claims it’s a simple: DLA for 0 to 16s, PIP for 16 to 55s and AA for the over 65s. For those on these benefits before PIP arrived, it will depend on your age on 08.04.2013 as to whether you need to switch from DLA to PIP
However, amongst the over 65s there will be some carrying on with DLA or PIP claims first made before the age of 65 , joined by new claims for AA from those whose health or disability issues first began after the age of 65.
With the wise over 65s on DLA being left out of the switch to PIP, to achieve the required savings PIP is looking to take nearer 30% out of what would have been the “working age” DLA budget. On the other hand, just as DLA s before, PIP is often wildly underclaimed, so don’t let these cuts put you off claiming PIP. The answer is still more often “Yes’ than “No”; and when it is a “No” , the figures suggest that it’s not always a very well reliable refusal, as 65% of appeals win.
1.3 Borrowing from ESA
To achieve the savings , PIP has adopted the same model of a two stage points based assessment - that has been problematic for many- as used by Employment Support Allowance (ESA)
ESA is a “sickness benefit” more about a basic income when health issues limit your ability to work, whereas the disability benefits are more about extra help with the additional costs of long term health and disability issues as they get in the way of daily living activities and getting around. So, at times during a cancer journey you may well qualify for both ESA and PIP together, while at other times after some initial help as you ease back into work, you might wave ESA goodbye but still retain entitlement to PIP, even in say full time work, if you still are experiencing “late effects” and long term limitations from cancer and its treatments.
ESA and PIP then continue to measure very different things and are paid for very different processes. What is common is the structure for that very different assessment adopted by PIP outlined in more detail below
The worry from the ESA experience is that just putting numbers on things doesn’t necessarily guarantee that things are more objective and consistent. And a reliance on a face to face assessment by a health professional does carry the risk of a more narrow medical model of disability, taking a “snapshot” on what may be a reasonable day and not being so good at understanding more “hidden” disabling effects.
It was felt that putting the emphasis back on to a medical assessment reports as routine, rather than at the Decision Maker’s discretion when there was insufficient other evidence, represented extra costs and stress for claimants, ran the same risks of error and represented a step back from the social model of disability embraced in the 1992 reforms that led to DLA and AA as we know them today.
Making PIP an entirely new benefit, rather than just changing DLA also meant the loss of a very useful body of case law that has helped define how to apply the criteria reasonably, mediating that creative tension between overenthusiastic guardians of the public purse at DWP and the creative imaginations of advisers. The aim with PIP was to design it in more detail so as to limit the need for intervention by the Courts, but nevertheless there is a growing body of PIP case law emerging, while the benefit as whole has had a run in with the courts And getting in the way of giving the benefit of the doubt to the “improvements claimed for PIP is the pre-existing target to cut money from the people Advisers work with
1.4 PIP’s progress: Early problems and delays
Things were not helped by the problematic introduction of PIP. Teething problems are always to be expected and allowed for in such a big change, but PIP suffered from not running a meaningful pilot before it went live for new claims across Great Britain in June 2013 and by October of that year, the assessment system had all but collapsed
For those with more advanced and life limiting cancers the assessment system can be bypassed altogether in exactly the same way as under AA and DLA . However, PIP conspicuously disgraced itself by not having the training, scripts resources and procedures in place to manage what were unchanged criteria. Meanwhile the new claims process makes it that bit harder for advisers to sort things out without people having to be confronted with issues of prognosis
Lessons were quickly learned, and things were sorted out so that this scandal was resolved and the experience for those claiming under Special Rules quickly became comparable with AA and DLA. It is though awful to see that DWP have been incapable of taking that learning forward to prevent a longer lasting and even more inadequate response as Universal Credit starts taking such claims.
Most people though with cancer will fall to be assessed under the normal rules. While PIP has adopted the process of ESA, it does not automatically make an award for that wider group who may be “awaiting, receiving or recovering from cancer treatments. It will all depend on the assessment of the individual effects that cancer , its treatments and any other health issues has on you.
The early error for ordinary rules claims involved a severe underestimate of the resources needed for running an ESA assessment system, especially if the aim was to make a step change in the quality of those assessments. By October 2013 the system was log-jammed and reports of lengthening waiting times to get a decision began to hit the headlines. Periods of 6 to 12 months or more became common, extending hardship and stretching out anxiety for many in desperate need. Indeed, as word spread, colleagues working in mental health report that many were just not bothering to claim PIP as they couldn't take the pressures of the process.
1.5 But things have got better in many ways
There was a much better response to the special rules scandal than from Universal Credit, so those issues were fairly quickly resolved with PIP. Sadly, it’s proving a much slower process to get much needed changes to UC’s approach
For those undergoing the full assessment the logjam cleared by early 2015 and normal service began : mostly the full assessment process – when needed – is achieved within the expected 14 weeks, since normal service started.
The DWP did take great care to consult with disability groups in devising the grid of activities and descriptors used and were willing to adapt. It is then – at least on paper - a much less contentious tool for assessing “disability” for PIP, than ESA’s Work Capability Assessment is for assessing “limited capability for work”. Or at least until the Government tried to change it in March 2017, changes which have largely been reversed by the Courts. You can see the grid in a handy single sided table via the links below
Of course, it's not just the shape look of the grid but what you then do with it do with it. Initially, advisers were pleasantly surprised at both the experiences people reported and the reports from assessments, but over time things have become a bit more mixed. Most people still pass so don’t be put off and the process is described a bit more below. But it should not be so easy to win PIP appeals when reports are flawed and unrepresentative.
And however much advisors may yearn for the more holistic and flexible potential of DLA, helping people successfully navigate PIP can be just as rewarding for the real differences an award can make to people’s lives . So regardless of the initial problems, problematic nature, disturbance to many vulnerable claims, PIP may yet become almost loved by advisers, even if we can’t quite forgive it for not being DLA. There is still plenty of scope – despite the cuts – for advisers missionary zeal in tackling under-claiming
It will also be a fascinating to see the contrast in experience pans out for PIP in Scotland as the benefit in its current form passed from DWP to Social Security Scotland. Early signs are that there may be a distinctly different feel to the process
- PIP v. DLA assessments - What’s the difference?
Leaving aside the trouble origins and history of PIP, what essentially is the practical difference between PIP and DLA as benefits aiming to do a similar job?
2.1 A different assessment process
For DLA, starting a claim was a simple initial step – and still is for DLA for children and AA when first claiming after 65. You just ring for a dated form and return the completed rather bumper pack within 6 weeks, containing your answers to:
- The more straightforward easier to answer administrative questions
- And it most cases the rather harder to explain big boxes about the difficulties and limitations you experience
The DWP look at that, any supporting evidence you also send in and consider if they need more from say your GP or consultant They will also consider if they need a Health Professional to visit you at home to do a report, but often they felt there was no need
Under PIP, the DWP adopt a model very similar to ESA:
- They would prefer you to answer the administrative/factual questions in a phone call when you make the formal claim, though they can send you a PIP1 Claim Form to do so instead.
- Those big boxes follow separately in a PIP 2 How Your Disability Affects you questionnaire which follows through the post a couple of weeks later
- After, that the working assumption is that most people will also have to see a Health Professional in a face to face assessment. The initial suggestion that 97% of people would attend a face to face assessment fell to 75%, both as pressures mounted on capacity and when it seemed that a credible PIP2 form with other evidence and consistent with what might be expected given the health issues had some common sense applied. Although the pressure is on to assess anyway, there are times when there really is little to be gained in putting people through the additional wait and stress just for the sake of it.
Left to their own devices as to whether there was enough evidence to safely make an award, DLA decision Makers only commissioned reports some 45% of the time.
2.2 Very different assessment criteria
The overall issues that DLA and PIP look at aren’t so different – i.e. extra difficulties with daily living and getting around - but the way these are assessed are very different.
For DLA Care, it’s more of an open box: you describe the difficulties you might have with say eating or dressing, and anything which means you could reasonably do with help be that by physical help or encouraging you or talking you through tasks. Other needs not covered on the form could also be included if they were relevant to your attention needs. All a bit woolly, but very flexible for very different health conditions and difficulties.
The rate of DLA Care depends on the amount of time for which someone could reasonably need help for e.g. just part of the day (lowest), spread over the day / just at night (middle) or both day and night (highest). The top two rates can also be awarded where someone needs little help with daily living activities but could do someone being around to keep an eye on them in case of substantial danger: again, with the rate depending on just day or night or both.
You can read more about how these AA and DLA conditions might apply to difficulties often associated with cancer in Part 1 of this series of blogs
For PIP Daily Living, the focus in on a range of 10 proxy activities only, so it is less flexible for those whose difficulties may be more off this grid. Many of the activities are familiar ones from the DLA form, however the issue is less the times of day and frequency for which you could ideally do with some help, but rather the severity of the difficulty as measured by the points system. In each activity, PIP has a number of statements – or “descriptors” – each bearing different points scores: which one in each area best describes your levels of limitations in managing that activity reliably? And what do they all add up to?
DLA Mobility has a very clear cut division between mainly physical difficulties moving around (higher rate) and a need to have someone with you in an unfamiliar place (lower rate)
PIP Mobility considers both these aspects together to reach an overall Mobility points scores. On the plus side that means:
- if you have problems in both areas they can for the first time be added together.
- It also means that those able to walk, but with a high need needs for support when out and about, can get points for the higher enhanced rate. Some 200,000 are expected to gain from that
On the downside:
- Some 600,000 people will be heading the other way largely from higher to lower as the goalposts for walking before severe discomfort move down from 50m to 20m.
- And less obviously, A further 500,000 are expected to lose their previous PIP Mobility by first covert and then over discrimination against those with mental health difficulties. The courts have intervened and the DWP are having to revisit every PIP case to check if people may have been unlawfully discriminated against.
2.3 The challenge of assessing cancer-related difficulties
For both benefits, the nature of the difficulties accompanying cancer and its treatments are a challenge: they van be a bit vague and diffuse, but still very limiting. Sometimes changes caused by surgeries are very clear cut with perhaps some permanent life-changing results from perhaps life-saving operations. But more often, it can be the harder to pin down effects of chronic fatigue, nausea, breathlessness, low mood or concentration issues; they may not absolutely stop or restrict you in a very defined way, but can certainly get in the way, as everything starts to feel a bit like swimming through treacle.
For both benefits, it is the disabling effects rather than the severity of the diagnosis that is the issue when an assessment is required. So, while there may be sympathy and recognition of the devastating effect of receiving a cancer diagnosis, the task for both benefits is assessing those day to day impacts.
For that DLA gains from having a much more flexible approach so that it can adapt around the individual lived experience ; PIP is more about trying to fit the person to the points grid.
As well as being often hard to pinpoint, cancer related difficulties can also vary during a day - where PIP is perhaps more helpful. But also between days, when PIP's more precise arithmetical approach has the potential to be a nightmare. Fortunately, common sense has over ridden any attempt to do it by the book …
- PIP and cancer related difficulties
The challenge is similar for both benefits and Part 1 of this blog offers suggestions around expressing these on AA and DLA forms. Some of that advice is very transferable to the very different PIP test: it can be just as important to think outside the box on PIP forms as on AA and DLA ones. So even with a PIP form to fill in it can be useful to look at that previous blog too.
With all three disability benefits, difficulties related to cancer are sometimes a clear-cut “No, I can’t manage that”, but more often than not, it’s more complex than a simple “Yes/No” answer. Perhaps, more of a “Well yes, I could manage it, BUT only if: I pick my time, have a reminder, have someone talking me through it/ have a little help with some of it/pick the right time/take my time…”
The difficulties might then relate to pain, breathlessness, fatigue, low mood or limited concentration. All things to take account of in all three of these disability benefits.
If you were to compare the kind of difficulties asked about on a DLA form and a PIP2 "How Your Disability Affects You?" form – an example of which you can access from the links below - you may notice many of the headings are similar, but some are missing.
But even where the headings are the same you need to remember that with PIP, it’s all about "points make prizes". With PIP it is then, very much worth looking at the points system and grid first.
Looking at the sample PIP2 form you can see some useful examples and guidance, but the DWP are a bit cautious about showing you the actual points system used. So, you may be interested in the handy single-sided table of those activities and points - courtesy of the Big Book of Benefits - that you can get to via the links below.
So, activities like washing, dressing, making a meal, and eating are familiar from AA and DLA. There are some important gaps though:
- the very useful "Getting out of bed" (where you can describe how you are first thing) or "Moving around indoors" (good for how you are during the day) have gone from PIP.
- there are no "day" and "night" questions, as PIP gives no extra credit for any disturbance to a potential carer at night; some may gain, and some may lose as they switch over to PIP as a result.
- following strict medication and monitoring guidelines can be very important during chemo, but this has almost totally disappeared from consideration under PIP. There is only 1 point available for general supervision, an almost useless one in the sums for an award.
- the more general Supervision against dangers that might result from e.g. a fall, chemo temperature spikes and other signs of infection, forgetfulness around common dangers etc has almost entirely disappeared. However, the concept is still there but tied into specific activities ; so, the focus needs to shift to what if the risk occurred while doing that activity?
On the other hand:
- some issues such as communication and social engagement are more clearly there as part of the main test, rather than grudgingly tacked on the end because of past legal judgements on AA and DLA criteria .
- there’s also a new Activity around making budgeting decisions that may be affected by the infamous “chemo brain”
PIP then has less capacity to capture all the difficulties that you face individually: not only are there pages missing compared to DLA, but also PIP lacks the ability to consider difficulties not listed in the grid and on the PIP2:
- For AA and DLA any help that you reasonably need to live as normal a life as possible can count, as long as it can be connected to daily living/personal care/mobility difficulties.
- For PIP it is about fitting the difficulties to the grid so that they score points. PIP is not trying to capture all your individual difficulties. Rather PIP hopes that the grid provides a representative and balanced sample of proxy activities that gives a wide range of illnesses and disabilities a reasonable chance of scoring somewhere.
The grid though is not as inflexible or rigid as it might first appear. Think not what descriptor you could eventually achieve, but rather what you can do "reliably". And in the PIP regulations that means" safely, to a good enough standard, as often as you normally might want to and taking no more than twice as long as someone without health/disability issues.
So if you can get yourself dressed, but not in the clothes you would normally want to wear, only after some prompting and encouraging, perhaps with a little bit of help with the fiddlier bits (from e.g. numbness in fingers) and only if you take breaks and take more than twice as long as you used to (perhaps because of fatigue), then , while you do get dressed, you may not be able to do so reliably.
It may be that you can only get dressed reliably ,if you had some verbal prompting, a bit of physical assistance (even just for part of the activity). Or if you are at risk, need supervision right through that activity. Or it may be that you can manage fine as long as you have some sort of aid – which could mean a purpose built long handled grabber, a front fastening bra or easy fastenings such as Velcro.
When cooking a meal, it could be special kettle pourer or an everyday object like a slotted spoon or an electric can opener, as long as you use them because of extra difficulty, rather than due to a fascination with the latest kitchen gadgets and spinning cans.
Using something as an aid often scores 2 points for that activity straightaway, although there is a downside in that aids might be considered to offset some of the difficulties that might hit some of the higher scores.
In Part 3...
Next time, we’ll take a more detailed look at some examples of how common cancer-related difficulties might fit into the PIP grid of activities and score points. We'll also look at issues around variability of difficulties during the same day and between days, not only across a chemo cycle but between stages in your cancer journey.
This may mean saying a bit more about possible "late effects" on PIP forms than with AA and DLA, even for a first claim after diagnosis. PIP is looking further ahead, and many might hope to be well into recovery 9 months hence. On the other hand, those late effects may mean an award could well be renewed just on those effects alone.
And we'll also see how a DWP example suggests that PIP may offer a higher award than DLA five years after breast cancer surgery.
In the meantime, please feel free to join the discussion forums to share your experiences, of the PIP claim process. And ideas and general queries about how cancer related difficulties might fit under the PIP points system.
For individual help and specific queries, you may want to visit your nearest Maggie’s Centre and talk to one of our Benefits Advisors Or look out other help in your area – see in the links below.
Useful links and further reading
- DWP: The "PIP1 Claim Form"- you can’t use this specimen as you need to ring for one, but shows you what it will look like or the questions you would be asked if you made your claim by phone - here
- DWP: How to claim PIP – details of the claim line number and opening hours and a short official explanation of PIP - here
- DWP - The " PIP2: How Your Disability Affects You" form – this will follow 2 to 3 weeks after making a claim unless you come under special rules – please don’t be put off by all the boxes as these blogs, other information and meeting an advisor can help you - here
- 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 “Disability benefits” series:
- Part 1: AA, DLA, PIP and Cancer - here
- Part 3: Of PIP points, common difficulties relating to cancer and variability - here
- Part 4: Of late effects and renewing AA, DLA and PIP awards in recovery
Other benefit blogs you might like to view:
- Find out more about.... Benefits and Cancer
- Find out more about befits for... Difficulties with day to day living and getting around
- 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 do the full claim form for any of the disability benefits. This series will help you understand what they are looking for but you may want to get face to face help from a benefits advisor from the start :