In Part 3 of this mini-series on disability benefits, we look in more detail at the PIP "activities" and "descriptors" to see how common difficulties related to cancer can relate to them, so as to score PIP points. This may be really useful when filling in a PIP 2 How Your Disability Affects You form or when preparing for a face to face assessment with a Health Professional.
Welcome to third 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 first claiming under 65 and Personal Independence Payment (PIP) is the new rather different benefit that is replacing DLA for those of “working age”.
- In Part 1 - here - 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 - here - 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 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
- And in Part 3 below, I continue to look at PIP related 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. But I then return to all three of these “disability benefits” to see how they deal with the very variable nature of so many cancer related difficulties. The numbers pick up from last time...
- Cancer and the PIP activities
Following on from last time’s general look at how cancer related difficulties relate to PIP, we take a gentle trip through the PIP activities in turn. You might want to call up in another tab – or print off – the attached table of PIP activities and point scores (see either the picture top right in this blog or click on the paper clip at the bottom of this blog)
Remember to think what you can do reliably , which means safely, to an appropriate standard, as often as you would normally need to and within a reasonable time) and not just what you achieve eventually at a push on a good day when you are feeling up to it. And also that you don't actually need to be getting any help at all to qualify; it's more a case of could it make a difference if it were available and you felt able to accept it.
The PIP assessment will award one score from each activity, taking the highest scoring descriptor that best describes the level of limitation you experience in managing an activity reliably at the worst point on a typical day. Now, often the right descriptor may be “Can manage… unaided 0 points”, but for example four sets of 2 points (e.g. because of needing a prompting or using what might perhaps be an everyday object as a “disability aid”) could make up the 8 points you need for the standard rate of PIP Daily Living
You will end up then with one total from the ten PIP Daily Living activities and one total from the two PIP Mobility activities.
- If either total comes to 8 to 11 points, you qualify for the "standard rate" of that component;
- if 12 or more points the "enhanced rate".
An award of PIP then may end up with just one component or both, each paid at either of the two rates.
4.1 PIP Daily Living Activities
Difficulties associated with the 10 daily living activities might include:
- 1. Making a main meal. You may not be able to face being around food too long due to nausea or find it too tiring , feel too low to bother or find concentration and timings get a bit lost. You might then need a bit of encouragement (1d – 2 points). It might be that you are left with some longer-term reduced strength in your arm after surgery and perhaps need to e.g. use a slotted spoon rather than drain a hot pan (1b – 2 pts.) or not manage too well on a hob and stick to microwaves (1c – 2 pts.) . You may need someone around all the time you are having a go cooking, if your concentration and confidence around knives, hot pans etc. has been affected (1e – 4 pts.).
- 2. Eating a meal At times, motivation and appetite may be an issue, while nutrition can be very important in your battle with cancer. You may need a bit of prompting (2d – 4 points) You may need to use a PEG/RIG feeding tube – 2c and 2 points if you manage this entirely by yourself , but 2 f and 6 points if you need help with this
- 3, Monitoring a medical condition: General supervision needs can be an important area under AA and DLA as where there is a substantial risk of danger these can justify an award of their own. Similarly, the managing of at times quite complex arrays of medication can add up to a lot of “attention. Yet under PIP these can only ever attract an unusually low 1 point under descriptor 3b) . And that unusually mean 1 point score – as everywhere else the lowest score is 2 points – has been dubbed a useless point as it can’t actually usefully add to other points to tip you over the 8 or 12 point needed, except in combination with the other odd point score under 4e in Washing and Dressing.
Where the points are available is for help with managing therapies. Now while you may be spending a lot of time with say chemo or radiotherapy, you only score points here when you need help managing these e.g. at home, which can happen with some chemo if you have a PiCC line . However , other therapies such as physio or speech and language therapy exercises might well count her. The points awarded depend on how many hours a week you might need prompting assistance or supervision with them.
However, it has been successfully argued that a complex medication regime could amount to a managing therapy. While the Government abandoned any further appeal on the issue, they stand by the regulation changes made in March 2017 that specifically rules this out for awards after that date.
- 4. Washing and bathing. It could be that you need some encouragement to bother if you’re feeling low (4c – 2 points). You might need to a bit of a hand getting in and out of a bath or shower (4e – 3 points). Bending and reaching may be restricted e.g. 4d – 2 points if you can’t reach reliably to do hair or feet or 4f – 4 points if you are more restricted.
- 5. Managing toilet needs. You may need an aid to reach to clean yourself, have to use a bottle at night or have to use pads (5b – 2 points). You may need to use stoma bags (5b – 2 points) or need help with doing so (5e – 6 points). It may add to the frequency of times you need to wash for points on 4 – can you manage reliably each time?
- 6. Dressing and Undressing Again encouragement to bother, the effort involved, or time taken may all mean you need a bit of encouragement or a hand with some of it (6c – 2 points). You might use a grabber to reduce bending or use adapted clothing, Velcro fastenings, front-facing bras (6b – 2 pts.). You might need to sit on a chair or the edge of a bed to manage lower garments, so this can be a disability aid for PIP purposes. You might prefer to manage on your own, but would some assistance for part of this activity help you do it reliably?
- 7. Communicating verbally: examples given include using an electro larynx, speech valve (or it could be an app for text to speech) 7b – 2 points. Or concentration to take in what’s being said (7c – 4 points). The bar is quite high here, as they are talking about understanding a single sentence or a couple of sentences rather than losing the thread of a conversation. It is though worth expressing any limitations here as they may reinforce the case for points under Activity 9 below.
- 8.Reading and understanding signs – may be less directly cancer related, but if you do need visual aids you might score under 8b – 2 points). Or do concentration issues make it hard for you to take in written information (8c – 2 points), although as with ?
- 9. Engaging with others. You may feel too low, or anxious to get involved in social activities. Or feel self-conscious about changes to your body. You may need someone to encourage you (9b – 2 points) or be a more active support throughout and to act as your minder heading off the unfortunate well intentioned who might overwhelm and helping you enjoy. (9c – 4 points).
- 10. Making budgeting decisions. Confidence and concentration can be blown while low mood and anxiety mean you avoid sorting bills out as you did before. If you find even simple transactions like checking change in a shop have become difficult then you might score under 10c – 4 points. More typically it might be more about needing some prompting, reminding and help with more complex tasks like budgeting and making sure bills are paid on time, dealing with issues etc (10b – 2 points)
4.2 PIP Mobility activities
There are only two activities to score from under PIP Mobility, but the descriptors available do reach up into higher scores than the Daily Living ones.
DLA separated the two sorts of difficulties completely – Higher Rate Mobility was exclusively for significant restrictions moving around (and a few other situations) while Lower Rate Mobility was for needing guidance or monitoring in unfamiliar places. So, under DLA if you had lesser physical difficulties you couldn’t get lower rate and if you had more significant needs in unfamiliar places you could not get higher.
On the plus side, under PIP:
- you can combine the two activities so that some difficulty in each area may combine to give a score
- if you have more significant difficulties in either area, you might score the necessary 12 points for an award of the enhanced rate of PIP Mobility
On the downside, it is under PIP Mobility that the Government are hoping to achieve most of the savings from replacing “working age” DLA with PIP:
- under moving around they are hoping that some 600,000 will drop from DLA Higher Mobility to PIP Standard Rate Mobility by moving the goalposts from 50 metres to 20 metres
- under following a journey they are hoping for 500,000 to lose DLA Lower Mobility, mainly by seeking to apply a different test for people with difficulties with a psychological and emotional cause.
The two PIP Mobility activities are:
1. Planning and Following a Journey
Wwhy might you need somebody with you in an unfamiliar place? It might be concentrating, finding the way, helping with fatigue, motivation, dealing with other people’s individual reactions or coping with crowds. If you only venture out at the quietest times are you doing so reliably?
This not only includes doing with company if you imagine getting around somewhere on foot, but also the added pressures of using a bus – getting the right one and off at the right stop, risks of infection, crowded and confined spaces, hanging around at bus stops?
If you have difficulties only in unfamiliar places, then you are looking at descriptor 11d and 10 points. But if you need somebody with you even in familiar places - including the new familiar of hospitals – then you might be looking at 11f, 12 points and enhanced rate.
There are some new – and some critics argue, unnecessary – descriptors relating to overwhelming psychological distress – 1b and 1e - which might ring a bell if you are finding issues mainly to do with anxiety, low mood etc. But anyone having these difficulties may also have problems either planning a journey or need someone with them in unfamiliar or familiar places. And these other descriptors score more points, so it may be better to focus on those. This is the only place where PIP suggests descriptors specifically for one sort of health issues – psychological distress – whereas the norm is to step back from the causes
Indeed, case law judgements have concluded reached the conclusion that where psychological issues get in the way of navigating they can count for descriptors 1c,d and f where the points are. This offers a way out of the covert discrimination of the lower scoring separate descriptors for psychological distress. In March 2017, the Government sought to close this off by making that discrimination much more overt by specifically disallowing theses descriptors from any issues caused by mental health issues.
And that is where the mark was overstepped and the discrimination in the new rules was ruled unlawful. So, the position is now back to what it was before the changes, where the effects of psychological and emotional impacts can be considered under all descriptors. Meanwhile the DWP are reviewing all PIP awards to identify cases they feel may have been affected with a possible view to making/increasing a PIP Mobility award.
- Moving Around
This focuses on physical walking – Here it may be physical restriction after surgery, chronic fatigue or breathlessness (e.g. from lung cancer). Or a combination with exacerbation of previous mobility difficulties. The Government are hoping some 600,000 less will qualify for enhanced rate under PIP, by moving the “goal posts”:
- difficulties that only arise after walking around 50 metres only score 8 points under 12c or 10 points under 12d for standard rate.
- you need to have difficulties within 20 metres to score 12 points under 12e.
However, PIP is probably clearer in setting out that this is not your limit on a one off basis at a good time of day, but what you can do reliably. In particular, PIP considers what you can do repeatedly in a more up front way than DLA Mobility, alongside how long it takes you including stops, the manner of your walking and safety (e.g. falls and stumbles).
Think not then what you can do on a good day, at your best time, in a determined need to get out mode; all followed by a well-earned rest for the rest of the day. But rather, consider what you can do safely, repeatedly, to a reasonable standard in a reasonable amount of time (i.e. not more than half a normal walking pace)
In Part 4, we will look at the issue of variability. Often the difficulties of living with cancer can vary within a day or across a week. During the year or so after diagnosis, you may be going through several different stages each one having sometimes very different challenges and issues.
All three disability benefits want to arrive at a long term view of your difficulties - a sort of overall assessment for that rollercoaster year . So how do they go about that? Are they going to have to constantly re-assess you at each stage? Or can common sense overview be reached?
Please feel free to post any general comments or queries or share experiences on these benefits in the forums.
For private individual support, please contact the Benefits Advisor in your local Maggie’s Centre -find your nearest centre here - or try some of the other suggestions in the links and further reading below.
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 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 4 – a return to look at how all three benefits might apply when it comes to renewals and describing the effects of late effects of cancer
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
- Find out more about.... Benefits and Cancer
- Find out more about befits for... Difficulties with day to day living and getting around
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 local 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