PIP benefit For CFS/ME

Brain and nerves
1

Does anyone know how bad CFS/ME has to be in order to claim the PIP benefit? I am very tired most of the time and can't get my housework done as a result. I live alone so have no one to help and when I go shopping it exhausts me. Even a shower exhausts me.The only benefit I currently receive is employment support allowance. Mary

2

Although it should be the level of functionality that matters rather than the individual's diagnosis, it does seem that those with CFS often get judged more harshly by the DWP. It could be worth applying if you have a supportive doctor.

3

I live on my own and know how difficult it is. I make use of the internet to do shopping even if its just click and collect so I don't have to go around the store

Have you tried pacing? For years I didn't do it properly and over the last 12mths I have taken it very seriously, doing it properly and its really paying benefits for me and I can do more now than I have been able to do in a very long time.

 

4

Thanks guys. I do try pacing but am probably not as disciplined with it as I should be! Just wondered if I could get this extra PIP benefit though I think you have to be really bad, say wheelchair bound or completely housebound to qualify. 

5

Hi 

the action for m.e website has notes to help you fill in your application for p.i.p. It also explains the criteria so that you can see if you qualify before you apply. 

Be prepared to have to appeal the first decision and then appeal and go to a private tribunal where you will get a fair hearing and if you qualify they will award this benefit to you . 

We went through the long long process and did get a low level award . But it was a fair decision and justly decided . The p.i.p benefit is harder to qualify for than d.l.a was. But people with CFS do still qualify so have a good research on the action for m.e. Website .. 

6

Thank you Sally. I will look at the website.

7

I hear it’s currently quite an ordeal and you have to be very sick/disabled to get the higher payments, since the shake up a couple of years go. ATOS the company doing the assessment for the government have told the government they don’t want to be the assessor any longer which speaks volumes on the direction it’s all heading.

One of the political parties in this coming May time general election have stated they plans to reform the whole system to save billions if they get in perhaps not the best news…

 

8

Hi Mary,

You can claim PIP even if you are working. It comes in two separate parts (a) the level of support/care you need and (b) Mobility.

The norm is to score 8-12 descriptors.

The Action for M.E. site as stated is very good.  When filling in the form you have to envisage your worst day from exhaustion, mobility, pain etc as you have a fluctuating illness.  On assessment you will be asked how far you can walk and whether you use an aid. 

I applied for P.I.P and went to assessment and had no issues obtaining it.

Good luck, and check out the site.

Tx

9

Thank you  very much Tina. I've done the first part and applied  over the phone answering loads of questions from the DWP . Have to wait for the form to come in the post now x

10

Hi Mary, I applied for pip and got it. I am currently off sick from work and have minimum energy levels. Good luck with your application and if you are turned down first time ask for a reconsideration x

11

Thank you so much; that's very encouraging. I'm feeling optimistic! X! 😊

12

Glad you got some positive advice Mary.  I currently get DLA at the lowest rate which is only half of the lowest rate for PIP.  I do have other medical conditions so don't forget to put down anything else that you have been diagnosed with.  As for fill it in as if every day is your worst day, that used to be the advice for DLA until they changed the system because when I was able to work, I used to help people fill in their forms.  However, by the time I came to fill in a form for myself, they had changed it and now ask how many days a week you feel like that.  I think it is the same for PIP.  I think they probably use some kind of formula to calculate how long it would take and how much it would cost for a carer to do for you the things you can't do for yourself.  They are really crafty so will be looking at whether you put your shopping away yourself once the supermarket delivers it etc.  It may also depend on where you live as they have already appointed a different company to do the interviews in some areas.  The best of luck and let me know how you get on.

13

PS - I can't do my housework either and I am too ashamed to let anybody in my house except my carer!

14

Thank you Christine. Very useful advice. It's so frustrating bring like this isn't it. On a good day it's hard to think of a bad day but as you say that is what we must do in order to get the help we need. 

15

How long does it take fir the pip to get to the doctors checks 

16

I'm not sure as I haven't had any experience of it. I've heard it can be 16 weeks? But others my know more. Good luck. 

17

Hi, you can get P.I.P. even if you work at the lower rate.  It is based on your mobility and care needs.  You have to score I believe 8 points for lower rate and 12 and over for higher rate which will give you the mobility element.

You must fill in the form as your worse day ever that you can remember.  If you go to Action for M.E. site, you will find an awful lot of advice about benefits.  I found a fact sheet which I presented to my G.P. when I was applying for ESA and was called for an assessment.  The fact sheet was guidance for doctors to ensure that their patients got the benefits they were entitled to and basically guided the doctor's what to include in their letter.  I did not have to go for an assessment and was put straight into the support group.  I always tell everyone on this site to check out Action for M.E. site, it also has a welfare helpline, advice on relationships, family, a whole multitude of help and support.

BTW don't use words such as occasionally and sometimes when filling in the forms as this implies that you are only occasionally not capable.

All the very best.

Tx

18

Christine i well know how you feel, i too cant do my housework and the house looks awfull too. Have only just found this PIP benefit For CFS/ME so this is very good for me.  ill look at the The Action for M.E. site tomorrow.

Sue

19

Mary are you saying you have to apply over the phone and fill in the form as well!  i wouldnt be happy to do this at all, not over the phone. i thought you just got a letter telling you they was stopping your DLA and you could choose to apply for PIP by filling in the form. I probaly wont bother as i know i dont stand a chance of getting it. Not on any medications for a start as there is nothing so score no points there at all.

Best of luck with your claim though. i wish id been born five years earlier then i would have been left on my DLA, unfortunatley i was born 1951, have to be born in or before 1948 to keep the DLA without the pressure of applying for PIP.

Sue

Sue

20

Hi Susan I'm thinking of applying for pip so was reading through this thread and noticed your concern over the phone call.

My belief is, for those transferring from esa to pip a form ot letter will be automatically sent to you for your transfer. You won't need to go through the same process as new claimants... so won't have you do the phone questions and form.

Hope this helps xx