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by Tombenefits

news and thoughts from the world of welfare rights
15 November 2016 at 17:26

PIP and Cancer 2. The PIP Effect

A 2016 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 new Personal Independence Payment.

In Part 1 of this series, I updated a blog by my predecessor looking at these favourite benefits for making a real difference to peoples lives.

And we looked in 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. You can see Part 1  here.

This time we are going to take a closer look at the progress so far of the more recent kid on the block that is Personal Independence Payment, 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 to PIP's very different assessment criteria, continuing into Part 3


1. PIP – the story so far

Now, PIP will eventually become – however grudgingly – one of our favourite benefits too :-) An award of PIP will do all the same wonderful things to someone’s benefits income as an award of DLA and AA did before. For like them PIP is: paid on top of all other benefits, in work and out,and far from being taken away from means tested benefits, can actually trigger increases in entitlement . That is until Universal Credit comes along (but that’s a whole other blog J).


1.1 The origins of PIP

The difficulty Advisors have in loving this new and troubled half-sibling of DLA and AA, is that PIP originates from the Government messing with the very DLA that we had grown to know and love.  

Back in the 2010 emergency budget, the Government announced it wanted to cut our favourite enabling benefit - DLA-  by 20%. Further thinking led to a decision to achieve this end by replacing it with a new benefit instead, along with making a rather controversial case for reform around the alleged failings of DLA, rather than a desire to save £2 billion a year.

The case against DLA wasn’t entirely convincing to observers at the time. And that includes the Government who are keeping DLA for children and those over 65 

This leaves PIP looking to deliver a 28% saving on "working age" DLA. In doing so PIP has adopted the same model of a two stage points based assessment that we have not grown to love at all as used in Employment Support Allowance.

Our ESA experience was that just putting numbers on things and putting people through rather expensively commissioned medicals (which can take a rather snapshot and limited view) did not guarantee the greater objectivity, fairness or consistency that was hoped for.

Putting the emphasis back on medical assessment in almost all casesm was also a huge step backwards towards a more medicalised view of disability and long term illness, rather than the more enlightened social model brought in by DLA in 1992. A new benefit also means jettisoning the accumulated and very useful body of case law that has constrained the DWP's ability to behave unreasonably, as well as Advisor's more optimistic notions. The aim with PIP is to design it in more detail to limit the need for intervention by the Courts, but there is a growing body of PIP case law emerging.

Claimants, advisers and support workers were not then initially too well disposed to welcome PIP with open arms: based on a controversial case for reform mainly masking real cuts to DLA, a more medicalised view of disability, the past experience of ESA problems and concerns over the impacts of transferring vulnerable people from DLA to PIP.


1.2 Early problems and delays

These doubts with the principle of the scheme  were not helped by the problematic introduction of PIP. Teething problems are always to be expected and allowed for, but the very limited pilot was not given time to run before PIP opened its doors to new claims across Great Britain in June 2013 and by October had collapsed.

The first issue to come up was PIP's failure to cope with even the bits that hadn’t changed – claims under Special Rules. The scripts and training were not in place for a telephone focussed system, and while these were changed and a dedicated team established, it is much harder for Advisers to smoothe the way to a claim than it is for AA and DLA. 

But the lack of piloting really showed up when it became clear that initial guesses as to the resources likely to be required for ordinary rules assessments turned out to be wholy inadedequate. By October 2013 the sytem was logjammed 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 has spread, collegues working in mental health report that many were just not bothering to claim as they couldn''t take the pressures of the process.


1.3 To end on a positive note J

But there are some more positive notes to end this geek’s grumble J.

To be fair, the DWP did take great care to involve disability groups in coming up with the grid of activities and descriptors used and were willing to adapt. It is then a much less contentious tool for assessing “disability” for PIP, than ESA’s Work Capability Assessment is for assessing “limited capability for work”. You can see the grid in a handy single sided table by scrolling down as the Maggies Cancerlinks page here.

Of course it's not the look of the grid but what you do with it :-)

While assessment reports seen so far have felt inevitably mixed, there did seem a step change overall compared to ESA reports. Feedback from claimants about the experience is a lot more positive than under ESA, apart from the wait to get one. The concern since is that early care and generosity of spirit is falling back a bit as PIP fails to meet predicted savings targets and on occasion PIP reports appear to fall down to the standards of ESA ones.

Additional staff were recruited - though it takes time from appointment to being able to fly solo, backlogs were caught up on and normal service - in terms of waiting times for a decision - started in January 2015. Claims are now within 14 week target times

And however much we may yearn for the more holistic and flexible potential of DLA, sorting out a PIP award will still be as satisfying as sorting a DLA in the real difference it can make to peoples lives.  And regardless of the changes and cuts sought, it will still be a hugely under claimed benefit for Advisor’s missionary zeal to get stuck into.

Who knows, in time we may grow to love PIP too? :-)


2. 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 the DLA?


2.1 A different assessment process

For DLA, starting a claim was simple – you just ring for a dated form and return the bumper pack within 6 weeks, containing your answers to all the easy administrative questions and your description of your difficulties. 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 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 to make the claim, though forms are available. The bit asking about how you experience your day-to-day difficulties comes later as they send you a separate PIP2 questionnaire in the post to complete.

Thereafter the working assumption is that most people will also have to see a Health Professional for a report, though an element of common sense is creeping back in with experience. An initial idea that 97% of people would attend a face to face assessment has fallen nearer to 75% as it becomes clearer that many clearly meet the test with little to be gained from the stress of a medical just for the sake of it. 


2.2 Very different assessment criteria 

The sorts of things that DLA and PIP look at aren’t so different - ie 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 can be counted, whether that means physical help or encouraging you or talking you through tasks.  Other needs not covered on the form could 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 overall pattern of needs e.g. just part of the day (lowest), spread over the day/just at night (middle) or both day and night (highest).

·      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, but the issue is less the time taken and frequency through the day that you could do with help. Rather it’s which of a number of descriptors best describe your level of difficulties in performing that activity reliably.

·      DLA Mobility has a very clear cut division between 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. 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 significant needs for support when out and about, can get points for the higher enhanced rate. Some 200,000 are expected to gain from that, but they will pass 600,000 people going the other way ,as the goalposts for walking move down from 50m to 20m. And less obviously some 500,000 are expected to fall off Lower Mobility. 

The nature of the difficulties accompanying cancer and its treatments are often vague and diffuse but still very limiting. Sometimes the changes from surgery are clear cut, but often its chronic fatigue, nausea, breathlessness, low mood or concentration issues not absolutely stopping you, but certainly getting in the way. It's a challenge for old DLA and newer PIP but the former gains from its greater flexibility.

Cancer difficulties can also vary during a day - where PIP is perhaps more helpful - and between days when PIP's more precise arithmetical approach is a potential nightmare. Fortunately common sense has over ridden the precise formulae in the Regulations.


3. PIP and cancer related difficulties

Expressing the kinds of difficulties that cancer treatment can bring, is tricky for both old and new disability benefits.  So it can be just as important to think outside the box on PIP forms as on  AA and DLA  ones– so worth taking a look at the previous blog - here - as those kinds of difficulties are also relevant to PIP.

With all three benefits, difficulties related to cancer are sometimes a clear-cut “No, I can’t manage that”, but more often than not is a more complex than a simple “Yes/No” answer.

More 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/ and 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 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 see here – 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, its 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 download from the page on Maggie’s Cancerlinks that you get to by clicking here.

You will notice a lot of the activities are similar ones to those in DLA, that we looked at last week e.g. washing, dressing, making a meal, and eating.

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. There are no day and night questions, as PIP gives no extra credit for any disturbance to a potential carer at night

Following strict medication and monitoring guidelines can be very important during chemo, but has almost totally disappeared from consideration. There is only 1 point available.

As has a more general Supervision against dangers that might result from e.g. a falls, chemo temperature spikes and other signs of infection, forgetfulness around common dangers

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 the judges told them to. 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: not only are there pages missing compared to DLA, but it also 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 is in connection with 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 difficulties, but hopes that the grid provides arepresentative and balanced sample of proxy activities that gives a wide range of illnesses and disabilities the chance to score somewhere. The grid though is not as inflexible or rigid a grid 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 taken into account to offset some of the difficulties that might hit some of the higher scores.


Until next time...

Next time,  we’ll take a 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 day and at 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 conversation here and share your experiences, of the PIP claim process. And ideas and queries about how cancer related difficulties might fit under the PIP points system.

But also please feel free to message me at any time to discuss your own situation in relation to PIP or any other benefits entitlement

Until then take care and look after yourself


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