PIP claims

Living with Parkinson's Work, benefits and money
1

OH has had Parkinsons for over 16 years, diagnosed  aged 47 and is on DLA lower for mobility but does have a Blue Badge as our GP recognised the need, on some days and in unfamiliar towns/cities. Also on middle rate care.

OH has been on these DLA levels for many years, 10+, and our daughters think that we should apply for higher rate PIP, DLA no longer being available. I have filled in the online assessment, not the actual one, but ones available online to see if you are eligible, and they do score highly on both counts.

OH recently dislocated their shoulder and for  6 weeks we had to have carers in, they now have a tendon problem with their right index finger, it won't bend so cannot do up buttons, shoelaces, difficulty using cutlery etc.We have some aids at home, grab rails etc,. and bought many more during the time of the  dislocated shoulder.

I see posts from members who have been relatively recently diagnosed, a year, or 3 or 4, are still driving or working and are receiving the higher rates  of PIP.

However, some days  OH can walk into town, so how many meters should I say they can walk. Some days OH can mow the lawns so can obviously do some physical jobs. However, at some point most days they cannot get up out of a chair, let alone walk anywhere. They have a careline for when I go out, we have a box with a key available for emergency services outside our house.

Some days they can dress themselves, other days they can't and so the list goes on.

I think that they are eligible for higher rate PIP on both criteria but am concerned that what they can do will outweigh what they can't when assessed as OH is always good when we see  our consultant.

Your thoughts please.

 

 

 

2

Benji

Yes you are correct Pip is not about what condition you have it is about how it affects your daily life, so no two people with the same condition would get the same rate of pip

Be careful with your resonse to the questions Benji but the main thing to remember is to be considered able to do something then you must be able to do it

1...Repeatdly( If your other half was to walk into town  would she be able to walk back ?  would they be able to walk into town a second time that day ? if the answer is no then you should be classed as unable to do it , a fit person would be expected to be able to perform activitied repeatedly

2...In a reasonable amount of time ( if it takes you more than twice the time it takes a fit person then you should be considered not able to do that activity )

3...To a acceptable standard

4... Safely ( this is probably the most important one , if your other half has tremors and say cannot cook a meal ie peel vegetabled due to risks of injury then you cannot be classed as being able to do the activity

 

Keep these point in mind Benji and when you fill in the form make sure you put that the activity cannot be done safely,repeatedly, to a acceptable standard and in a reasonable amount of time and then explain why the better picture you paint the better your chances of a award

 

Hope this helps

3

Thanks Shelly, but I am well aware of the criteria for higher rate PIP claims.

Paragraph 4 in my original post is what was really the  crux of my post.  Those  recently diagnosed, a year, or just 3 or 4  years ago, who seem to have reaped all the possible benefits and how they did that, hand on heart, when they applied for higher rate PIP, as opposed to our present situation, 16 years on, baffles me.

I am well aware that P affects people in different ways and  in different time scales but how do you get higher rate PIP when you have been diagnosed for a relatively short time and those who have had P  for many years   are relegated to far less, even if their progression is less?

Maybe this is why so many  face to face interviews, and subsequent appeals against   the decision, are required  for those who, relatively quickly, claim higher rate PIP. Are they clouding the issue for those who have had P for many years and are then called to count when they apply?? Are those making the claim, early after diagnosis, making it  more difficult for those who have had P for many years to claim because claims have been often rejected and have to go to appeal ??

Shelley, you drive, my OH no longer drives, only to be  expected after 16 years, BUT, you also get higher rate PIP, I think from some of your previous posts.Please correct me if I am wrong in that assumption.

We know of   several PWP who have been diagnosed in the last few years, they drive,  have higher rate DLA mobility  and all that goes with that....free car, road tax, servicing,  etc. They can do far more than my OH can do.

I would now welcome your take on my post and not just quotes from the criteria to qualify for PIP.

4

Benji

I think you have misread my post it was not meant in any way  derogatory , it was actually meant to be helpful

Yes i do get high rate pip, i may be able to drive  and it is wrong to make the assumptions that i amongst  others who have recently been diagnosed should not qualify for high pip  without knowing the full facts    i  i do have mobility problems , i wear splints on my legs for walking and splints for resting and indeed use two walking sticks  i underwent extensive physiotherapy and hydrotherapy to try improve my mobility , if i did not have a car i would be confined to the house as i was before i was awarded pip , the decision about what level of pip you are awarded rests solely with the dwp decision maker after the face to face assessment

I may have been diagnosed last year but everyones rate of progression will vary a year from diagnosis i take Madopar 5 times a day i think that is a good indicator as to the effect pd has on my life

No one can claim higher pip , i like everyone else under went a face to face assessment  and i was awarded points according to the assessors  finding .and the medical evidence i provided

It is not about when you are diagnosed it is about how your illness is affecting your day to day life, mine does effect my life i just choose to  try make the most of my life whilst i can . yes i was officially diagnosed a year ago but i had symptoms for at least 5 yrs prior to that

If your other half cannot do a lot of things then you should tell the dwp of your other halfs increasing difficulties

Mobility cars are far from free Benji , they have to be paid for with your mobility allowance

 

 

5

Hi Benji

i do agree with Shelly that everyone experiences Parkinson's in a different way.

Some are diagnosed quickly or after many years of symptoms and daily life may be badly affected , worsening quickly.

Others may be diagnosed early or late and remain relatively able to carry out activities for a long period of time.

It is a condition which varies enormously from person to person.

As Shelley says, the claim is judged on the ability to carry out a range of tasks, safely, in a timely manner and repeatedly.

The length of time you have had the illness is not relevant.

If your OH  feels s/he has not been awarded the level of support he qualifies for, you can appeal and perhaps the Parkinson's support worker or Citizens' Advice Bureau could advise you.

Good Luck!

GG

6

 

Hi Benji

On the subject of varying progression, quite apart from the years it takes for some people to even get a diagnosis, and the physical difficulties that have developed in that time,   a friend of my daughter-in=law.s mother, the same age and  dx the same time as me in 2009, needed to use a wheelchair within three years.  Whereas the average person  would not know I had PD .  I take a total of 5 sinemet a day and azilect and am just starting on rogotine patches to avoid increasing the daily total of Sinemet.     I have responded very well to the levadopaI am now 74),  apart from severe sickness when building up to the starting dose,   whereas younger people are often started on dopamine agonists which are preferable although not so effective as Sinemet to avoid the possibility of developing dyskinesia.   But after sixteen years with PD I would be surprised if I was telling you anything you do not really knoiw.     

Are you in touch with your local PD UK Welfare advisor?  I believe they have them in most areas.  Phone the helpline above and they will put you in touch with an advisor who will help you to put your case in the best way and at the very least give you someone knowledgeable to talk the whole situation over with. 

Best wishes

      

7

My OP was not intended for anyone in particular but it seems it may have been  misconstrued that way, by        a somewhat  defensive response.

OH is confined to the house unless I drive them and I have a problem with my eyesight which is not treatable and is progressive, as is P.

OH takes a high dose of medication every day; every 2 and a half hours, a 125mg Madopar X 6 pd and 12mg Requip every day, as well as a sometimes needed quick action Madopar dispersible.They were on Madopar 3 times a day, it's the dose that is the indicator of how bad P is, not the  frequency of dosage.. it  could be 62.5mg Madopar a number of times per day,  they were on that years ago.

I belive that the length of time that you have had P is very relevant, especially if it's 16 years. Nobody can say that at that point that your quality of life is unaffected. It is, and in a  huge way.

8

Not a defensive post at all Benji i was merely responding to your statement about people being diagnosed fairly recently being entitled to high pip  it did certainly come across as being aimed at people recentley diagnosed , my post was intended to say that pd is very individual and no two people will ever be the same  , some with pd will progress really quickly some really slowly so to judge someone by the amount of time they have been diagnosed  is  not really fair ,i have had a genetic test as my mother has pd also and my maternal grandfather had a dementing illness if there is a genetic link that may explain my quick progression

My dose of Madopar is not that much different to your other halfs  i take 125mg x5  every 3 hours at present and Azilect 1mg once a day , i was given the choice by my neuro  a dopamine agonist but he said i would need levodopa within a year or go straight onto levodopa which i did Sinemet but suffered severe nausea so i had to change to madopar, my starting dose was 125mg 3 times a day so in 12 months i have jumped up to 5x 125mg a day, im in my 40s

After 16 years with pd yes of course it is going to affect your quality of life there is no dispute about that and has others have stated if you feel that your other halfs condition now requires a higher award  to contact your puk support worker to help with your case .

9

It is not really appropriate to compare dwp awards on here as PD is an individual illness which differs in person to person

NO one claims higher rate pip you get what you are given and then you have the right of appeal how one assessor views the illnesss is different to how anorther views it and this results in different awards which is unfortunate.

But people should not forget pip is different to dla as pip is based on how your condtion affects you not as dla the actual condition itself.

It is also very important to understand that you can report a change of circumstance to dwp if your condition changes and you need more or less help You need to contact them they wont contact you unless at the end of an award or like pip when you have a reassessment date....................Paul

10

benji .everyone on dla will be reassessed again by 2016 ,so they switch over to pip,thats what we have been told.

11

Hopefully, not the over 65s.

12

i think your ok if ! not to sure but think its 50 s ok

13

wrong thought 50s bit young ,its 16 to 64 ..gov

14

Spent most of today filling out, in rough, the PIP2 forms. Should have done so sooner.

Thought you had 28 days to return them but I have just 21 days and with the Bank Holiday, despite contacting consultant and PSN,when we started the claim, I won't have their reports in time to include!!!

15

What do you include on the additional information page apart from adding anything that there is not enough space for to include for each question?

16

Hello Benji

Although I'm the one with Parkinson's,  I fill in the forms for my OH who has a lot of health problems. I always use the any other information page to tell the assessors anything that I feel is relevant,  whether they have asked about it or not.  The more information you can give, the less chance of having to undergo a face to face assessment. 

Good Luck.

17

If anyone has PIP forms to fill in get a support worker from Parkinsons UK  to help fill them in, they really know what they are doing. They just know how to explain everything, because of them my wifes application went smoothly

                       Billywhizz

18

Thanks Bluebarb, I'll put everything else in there that I think is relevant.