Consultation on PIP - help needed by the 5th August


#1
The Government is wavering on one of its controversial Personal Independence Payment (PIP) rules. Under new tests only people who can walk up to 20 metres and no further are certain of getting the most help with mobility costs. Anyone who can walk a bit further than that is potentially at risk of losing vital support.

We think the 20 metre rule for mobility payments should be scrapped. Please help by emailing the Government to ask for a fairer distance. Click on the link below for details of who to email and some text that you can use.This needs to be sent in time for the deadline of 5th August.

http://bit.ly/13mTsO8

#2
Hi !
Firstly I want to let you know I have sent an e-mail. In my case on an off day I cannot walk at all but when the pills are working I can move around a little provided I have regular rests.

But one thing that concerns me is the number of "sporting" events that people with Parkinson's enter into. Granted, many of the fliers in the magazines for the xyz marathon are aimed at able bodied PUK supporters - and this is not a problem. But what is the public perception of PwP when some of us have walked / jogged / run / swam / cycled / canoed from Lands End to John O'Groats whilst back home use our Blue Badge to park on yellow lines, get disabled discount on train and bus travel and are receiving PIP / ESA / DLA.

How many times have PwP Blue Badges holders get commented on by passersby if our medication is "on" and we stride out of the disabled parking bay ? It has happened to me on a few occasions. What do you think the public at large would think if this same blue badge holder had just come back from climbing Mount Everest ?

Take Care !

westby

#3
You are absolutely right Westby. I have huge admiration for those who take part in sporting activities, however, it doesn't help the public or the Gov't to understand the difficulties associated with PD.

Difficult to explain that you are disabled when you have just completed another marathon !.

Caroline.
x

#4
Dear Westby,

This is a really common worry and as you say is a source of ignorance.

Ultimately anyone concerned about accessing benefits and reporting changes to eligibility especially if they are planning these sorts of activities, should contact our helpline for advice.

However we can tell you a bit more about the work we’re doing to try and get more understanding of the fluctuating nature of Parkinson’s in the benefits system.

First we worked really hard with help from campaigners to get the “fluctuating” nature of Parkinson’s recognised in the PIP tests when we handed in the petition last year.

It should mean that no one who goes for a PIP assessment is judged on how they are “on the day” in front of the assessor. Your walking over a distance will be judged on whether you can do it safely, repeatedly, to a reasonable standard and within a reasonable time period It also means if you have periods when walking is really difficult eg. freezing episodes at some stage of the day, over 50% of days in a year, then you should meet the criteria for top rate mobility PIP. The issue will be putting this into practice so we’re now in meetings with Atos and Capita – the companies doing the PIP assessments - to make sure they know how Parkinson’s affects people.

The remaining issue we have at the moment with the PIP mobility tests is they don’t use the 50 metres distance used in ESA and blue badge, which is why we’d like them to put PIP mobility on a par with the other tests.

With ESA tests, we’re involved in a cross charity/government project that is testing our ideas with some claimants at the moment on how to better record fluctuations too.

And with blue badges, we’re just looking at people’s experiences of trying to get these and whether we can also convince the government that they need to recognise fluctuations better in the rules.

I hope that helps.

Amy
Press and Policy Assistant

#5
Hi Amy
Many thanks for the reply - I cannot fault your approach and reasoning.

There is an issue with regard to the normal method of applying for blue badges / DLA etc etc which is that you fill in a form which does not easily cater for you fluctuating condition. I have yet to have a real medical let alone one that is conducted at varying time to cover freezing & a levadopa high.
The advise of describing your worst day on the claim form seems the best approach, but it would surely be more beneficial to describe a more balanced view of daily life for PwP.

Take Care !

westby

#6
Hi Amy this is what the citizens advice publish on PIP. Is it the same as you see it or has it been amended.

Scoring your abilities

When the DWP decision maker decides which descriptor applies to you, you'll get a point score for each activity. For example, if you can dress and undress unaided, you'll score 0 points for that activity. If you can’t dress or undress at all, you'll score 8 points.

Your points for each activity will be added together. If you score enough points, known as the entitlement threshold, either for daily living activities or mobility activities or both, you'll qualify for PIP.

You must score:

8 points for daily living activities to get the standard rate of the daily living component, or 12 points to get the enhanced rate
8 points for mobility activities to get the standard rate of the mobility component, or 12 points to get the enhanced rate.
For example, under the 'Moving around' activity, if you can stand and then move using an aid or appliance between 20 and 50 metres, you would score 10 points against descriptor D. This would not be enough on its own to get you the enhanced rate of the mobility component.

However, if you can't move up to 50 metres safely, repeatedly, in a reasonable time or to an acceptable standard, then one of the higher scoring 12-point descriptors would apply to you and you would qualify for the enhanced rate of the mobility component.

Example

Bob can walk with a walking stick up to 50 metres, but can't do this again the same day because it exhausts him and causes him pain. It's reasonable to expect someone to walk up to 50 metres more than once a day, but Bob can't do this repeatedly. He can walk up to 20 metres and repeat this in the same day. Therefore descriptor E would apply to him. In this case, he would score twelve points and be entitled to the enhanced rate of the mobility component.

#7
Hello Leyther,

It is very confusing thanks to the introduction of 20 metres out of the blue. At the moment the 12 points descriptor Descriptor E (gets you enhanced mobility PIP) says

“Can either stand and then move more than 1 metre but no more than 20 metres either aided or unaided”

And the 10 point descriptor Descriptor D (gets you the standard (lower) mobility PIP) says

“Can stand and then move using an aid or appliance more than 20 metres but no more than 50 metres”

With 8 points Descriptor C (and standard rate) also going to people who can

“Can stand and then move unaided more than 20 metres but no more than 50 metres”

Underpinning descriptors is what we will call the “behind the scenes” legal rule that you need to be able to walk a distance “safely, repeatedly, in a reasonable time or to an acceptable standard”.

So the example the government has given out and has been cited by Citizen’s Advice is correct, Bill uses his walking stick and can cover 50 metres once a day. In reality the only distance he can cover “safely, repeatedly, in a reasonable time period or to an acceptable standard” is 20 metres. So Descriptor E applies. Good news for Bill.

Our concerns

There’ll be people with Parkinson’s who can do a bit more than 20 metres repeatedly most days (not a lot more) before they start having problems and who don’t need an aid or appliance (Bill has a walking stick). So that worries us. Here’s an example from the consultation:

Sabeen is able to stand and move short distances unaided, usually between 30 and 40 metres. On a good day she can move as far as 50 metres but she can rarely ever go further than this because of severe breathlessness. She can, however, repeat shorter distances with a short break in between. She can repeatedly walk distances of more than 20 metres but less than 50 metres. Aids or appliances do not help her to walk further in a reliable way, so the most appropriate descriptor is C. Based on this Sabeen would receive entitlement to the standard rate of the PIP Mobility component.

It also worries us that some people will take the descriptors at “face value” and think that only those who have problems over 20 metres should bother applying for PIP enhanced mobility. It doesn’t help that the government consultation itself implies they only really want to target the highest rate of PIP at people who are effectively housebound:

The benchmark of 20 metres was intended to allow us to distinguish between those who are effectively unable to get around due to reduced physical mobility – for example, people who are only able to move between rooms in their house but go no further – and those who have some, albeit limited, mobility.

So that is why we want a much simplified rule to be difficulty walking up to 50 metres unaided or aided – like it is on lots of other mobility assessments – and that links to enhanced mobility PIP.

Does that help?

#8
I dont think you need to change anything.

Difficulty is a subjective term, what I deem difficult is vastly different to what others consider difficult.

Redefining the distance doesn't help either to my way of thinking. 50 metres, 20 metres, a mile or a marathon are all arbitrary distances. As are any of the tests.

It's the way you approach filling in the forms that is critical. The forms are designed to establish whether a payment of benefit is required, this is true of DLA and from what I have read the same can be said of PIP.

You have to take on a different mind set, you are assessed on your needs and admitting what you really need can be a dent in a positive attitude.

I know of several people who have been put in the available for work category when applying for ESA, however I know of 3 people who have got their ESA awarded without an interview required, each adopted a different approach to filling in the form. One undertook to fill it in themselves, using knowledge found on the internet from other disabled people, another used a private welfare advice organisation and the third the welfare officer from the PUK. The common ground being that you need to seek the right advice.

DONT ATTEMPT THESE FORMS UNLESS YOU ARE CONFIDENT IN YOUR OWN ABILITY. SEEK HELP INSTEAD.

What I would focus on with regard to the mobility tests for PIP is the word safely.

Safely I would take to mean. Can you do the task without potentially harming yourself or endangering others.

If you are unsteady on your feet the potential to fall is greater and you may hurt yourself or fall on to someone else. You may be able to cover the distance but your gait is such that it could cause long term hip damage, ie your leg drags. Walking fatigues you, you are subject to freezing episodes, you may suffer dystonia or dyskinesis.

Any of these symptoms could occur at any time particularly when stressed. Also walking doesn't just occur on an empty path, you have to deal with other pedestrians, crowds, traffic. The material you are walking on changes, tarmac, potholes, kerbs, carpets, rugs, mats, steps, changes in incline, corners all have to be negotiated.

We may go "off" at any time, I don't know anyone with PD who doesn't have an off period at least once a day. Its one thing to do a charity walk in a controlled environment with adequate footwear,consistent ground underfoot and support provided by volunteers with first aid and massage available. Quite another to have to travel 50 metres in a crowded town alone.

The anxiety and stress you can feel and the potential danger of falling, causing others to walk into you or causing a traffic accident are very real.

All this information needs to be included on your claim form. If you have to attend an interview take someone with you who can help by supporting you and also give their perspective on your condition eg they may be worried if you attempted to cook that you may not smell gas because your sense of smell is impaired.

There will always be forms to fill in unfortunately, but they can be overcome with the right advice.

#9
You are right. All PWP have "off" times which are unpredictable.
My husband is too old to be involved in all this but if he was I'd fill in the form saying he had these spells often and then answer all the questions according to how he is when off,
Then on the day of the medical I would tell him to forego his medication, bung him in the wheelchair and deliver him.
For a start he wouldn't be able to string an answer together...
Return home, nice cup of tea and Sinemet.
He paid taxes all his life and never claimed a penny until he was 60. Bankers can't have it all. We need and deserve it.
Fight on!
GG
X

#10
Dear All,

May I please pick your brains on the subject the PIP test? I am the person with PD, but my son has Cerebral Palsy and is expecting to be called for a PIP test in the near future. He can't walk 20 yards unaided, but he can cover many more than 20 yards in his wheelchair. When he goes for his PIP, should he arrive struggling on foot with his two support poles, or should he go in his wheelchair? We are not trying to be dishonest, but just to paint the picture as it actually is. Thank you.

#11
http://oxfordstudent.com/2012/07/29/atos-healthcare-still-profiting-from-misery/

I think it is reasonable to treat Atos with the fairness and respect that they show their "clients".40%of those whose benefits were withdrawn have Atos's decision overturned on appeal.
In 2011 32 patients a week died after being told they were fit for work.
GG