Should I appeal my PIP Decision?

Jordan_UK

Hello. 
I recently received a decision regarding PIP and received 0's in everything. I have Chronic Fatigue Syndrome (C.F.S) so my symptoms (fatigue, muscle & joint pain, muscle spasms, memory, communication and concentration difficulties) fluctuate as does the level of help I need, and the ability I have also fluctuates. The report has ignored lots of information and taken to the extreme the little I can do on good days, disregarding the fact that my symptoms fluctuate and I am unable to do these tasks as often as I need to. They did the same with my Mandatory Reconsideration, even adding things that I can do, for example: "You said you will cook lunch and sometimes dinner..." when I explicitly said in my mandatory reconsideration reply that I do not ever cook my evening meal and can only sometimes cook my mid-day meal.
I need to spend large portions of each day in bed resting (during which I cannot perform a number of the activities they're assessing, and sometimes cannot get out of bed for hours in the morning due to physical limitations). 
Aside from that they even assessed my pain levels and thresholds over the phone without asking any questions about it, simply stating that I did not sound in pain over the phone. 

While this all sounds ridiculous (especially once I write it down), I am still uncertain whether to appeal or not. I am a recipient of ESA on an enhanced rate. Does the fact that I can sometimes do the PIP activities disqualify me from PIP?  I had trouble with ESA too, because of the nature of C.F.S and the way the answers are assessed, but I don't want to appeal for something that I'm not entitled to, especially at a tribunal that could potentially waste a lot of people's time/money.  

I don't use 'aids' like walking sticks ect., when I can't perform a task I simply forgo it, such as a daily shower or walk, or a family member makes the meal (or I skip the meal). I don't need to manage budgets and would struggle if I did. I have a few simple standing orders which I set up over the course of several weeks, and found mistakes later on anyway which needed correcting.  
For things like, 'do you need help dressing and undressing?' in the mornings I may not be able to get up, therefore I can't get dressed and I will wait until I am physically able to do so, which might be several hours. 
I have a very flexible schedule and accommodating family, but if I did need to get up by a certain time, if I did need to communicate with people I'm not familiar with, or mix with people when I'm having a bad day, read a certain amount per day, then I would need help from other people/aids.

I don't know if PIP is based on helping you with tasks you need to complete in your personal circumstances, on a per-case basis. Or if it's based on how limited your ability is, in sometimes theoretical situations (like navigating in unfamiliar places)? 
Any advice or clarification on points would be greatly appreciated, thanks.

Spoonie_Turtle

but if I did need to get up by a certain time, if I did need to communicate with people I'm not familiar with, or mix with people when I'm having a bad day, read a certain amount per day, then I would need help from other people/aids.

It is based on whether you can do the things repeatedly, as often as would reasonably be expected, reliably, safely, and in no more than twice the amount of time it would take a non-disabled person to do it. So, what I've quoted from your post is exactly the kind of thing that should be considered.

ESA is based partly on theoretical situations but takes into account some of the reality of individual circumstances as barriers to work or related activity. PIP is based on set theoreticals, for instance the standard for preparing food and cooking is clearly defined in law regardless of what your actual situation is. But a tribunal is tasked with finding the facts in each case in order to decide how the law applies to each individual they see.

In other words, yes definitely appeal!

In case you haven't seen it, here's the guidance on how PIP should be assessed: https://www.gov.uk/government/publications/personal-independence-payment-assessment-guide-for-assessment-providers/pip-assessment-guide-part-2-the-assessment-criteria
And this site goes into case law, the finer points of how it's applied: https://pipinfo.net/

tacpot12

I think you should appeal. Your description of how your condition affects you indicates that you should have scored more than zero points for daily living. The fact that you can sometimes do things does not disqualify you from PIP - the DWP should be assessing the impact of the times that you cannot do these things. It sounds like when you cannot do certain things you do need assistance and this is what PIP is supposed to provide.

Have you considered whether a family member might be able to provide you with more support if they were to claim Carers Allowance for the time they spent supporting you? (They would have to spend at least 35 hours a week caring for you to qualify). 

Spoonie_Turtle

tacpot12 said:

I think you should appeal. Your description of how your condition affects you indicates that you should have scored more than zero points for daily living. The fact that you can sometimes do things does not disqualify you from PIP - the DWP should be assessing the impact of the times that you cannot do these things. It sounds like when you cannot do certain things you do need assistance and this is what PIP is supposed to provide.

Have you considered whether a family member might be able to provide you with more support if they were to claim Carers Allowance for the time they spent supporting you? (They would have to spend at least 35 hours a week caring for you to qualify). 

I can't speak for the OP but I also have ME/CFS and when I'm not well enough to get out of bed, no amount of assistance will make me be able to do anything like shower or even get to the toilet. E.g. Mum would happily wash me in the shower but if I can't even get out of bed let alone get into the bathtub and sit up, there's nothing she can do for me! (Thankfully days that bad are rare for me if I've been able to sleep for long enough, but they would certainly increase if I tried to do more than I currently do even if someone physically helped me.)

However with things like cooking or physical tasks that they can do for you then yes a carer can be extremely helpful. They do also need to earn below something like £128 per week to be able to claim CA.

Jordan_UK

Thank you, these responses are very helpful.
My mother is the one who looks after me the majority of the time. She runs her business from home though and the pay per week varies, sometimes more sometimes less than that figure. I'm in a similiar boat to Spoonie_Turtle as regards how my condition effects me and what those limits are, so how much time my Mum actually spends helping is hard to gauge. I already get help with some physical tasks like meals, transport, laundry ect, but that doesn't amount to 35 hours. So, I have considered carers allowance but I think ultimately we wouldn't qualify. 

The information about PIP is a big help though, so thank you both. : ) 

Jordan_UK

This is somewhat related...  can I formally request my GP's help with this and get a statement/letter from them as to how my condition effects me on a daily basis? 
The Surgery I am with is not very helpful and it's very difficult to get past reception to make an appointment for something like this. I tried with the PIP Mandatory Reconsideration and they said they can only print off a list of my medical conditions but that's it, can I ask for more than that with a tribunal coming up?
I was able to get a letter supporting my claim from my previous GP (who has since retired) for my ESA Mandatory Reconsideration and that made a big difference in overturning the call so I was hoping to get something similar here. What help can the GP provide in these situations or is the presence of a real doctor at the tribunal enough? The 'medical professionals' the assessors use clearly didn't know anything about my condition but can I expect the doctor in the tribunal to be a fair substitute for my GP? 

Spoonie_Turtle

Jordan_UK said:

Thank you, these responses are very helpful.
My mother is the one who looks after me the majority of the time. She runs her business from home though and the pay per week varies, sometimes more sometimes less than that figure. I'm in a similiar boat to Spoonie_Turtle as regards how my condition effects me and what those limits are, so how much time my Mum actually spends helping is hard to gauge. I already get help with some physical tasks like meals, transport, laundry ect, but that doesn't amount to 35 hours. So, I have considered carers allowance but I think ultimately we wouldn't qualify. 

The information about PIP is a big help though, so thank you both. : ) 

I wouldn't discount it without making sure you've taken into account all the things that your Mum may be doing  that she wouldn't have to if you were disabled - I don't quite know how far yu can take that reasoning but I know for me, Mum would only have to do half the housework if I were able to do my bit as well (I'd love to read some official guidance on this!). But you need to have the PIP awarded first anyway, so you probably have plenty of time to think about it.

[In terms of income there is something about 'after necessary expenses' and it is a benefit paid weekly so even if some weeks go over, she'd still be able to receive it for the weeks when her income is under the threshold.]

Re supporting info from your GP, I don't know but I'm sure others will.

Jordan_UK

Spoonie_Turtle said:

Jordan_UK said:

Thank you, these responses are very helpful.
My mother is the one who looks after me the majority of the time. She runs her business from home though and the pay per week varies, sometimes more sometimes less than that figure. I'm in a similiar boat to Spoonie_Turtle as regards how my condition effects me and what those limits are, so how much time my Mum actually spends helping is hard to gauge. I already get help with some physical tasks like meals, transport, laundry ect, but that doesn't amount to 35 hours. So, I have considered carers allowance but I think ultimately we wouldn't qualify. 

The information about PIP is a big help though, so thank you both. : ) 

I wouldn't discount it without making sure you've taken into account all the things that your Mum may be doing  that she wouldn't have to if you were disabled - I don't quite know how far yu can take that reasoning but I know for me, Mum would only have to do half the housework if I were able to do my bit as well (I'd love to read some official guidance on this!). But you need to have the PIP awarded first anyway, so you probably have plenty of time to think about it.

[In terms of income there is something about 'after necessary expenses' and it is a benefit paid weekly so even if some weeks go over, she'd still be able to receive it for the weeks when her income is under the threshold.]

Re supporting info from your GP, I don't know but I'm sure others will.

Understood, that's certainly something worth looking into, thanks again!

poppy12345

Jordan_UK said:

This is somewhat related...  can I formally request my GP's help with this and get a statement/letter from them as to how my condition effects me on a daily basis? 

Why would you ask your GP for a letter when they hardly know you? The don't live with you and when they do see you, it's only ever for a very short period of time. Anything they state in the letter would need to come from you in the first place and paying for that information is totally pointless.

Medical evidence isn't needed for any PIP claim because a diagnosis is rarely in question. medical evidence will very rarely state how your conditions affect you against the PIP descriptors.  What is needed is anecdotal evidence and the best person to give this is yourself.

A couple of recent real world examples of what happened the last time you attempted that activity for each descriptor that applies to you. Who was with you? where did it happen and what exactly happened, is all that's needed.

In a comment above you stated this... You said you will cook lunch and sometimes dinner..." when I explicitly said in my mandatory reconsideration reply that I do not ever cook my evening meal and can only sometimes cook my mid-day meal.

 If that was all you told them then i'm really not surprised they didn't award you any points. You have to explain in detail and give those real world examples for each activity/descriptor that applies to you. Tell them why you can't do this activity and what happened the last time you attempted to do this when you really felt like you couldn't do anything but made yourself do it because you were so hungry, you had no other option.

If you take it to Tribunal, this is what they will be looking for and i'd advise you to do exactly this when you write your submission.

PIP is based on the help you need, whether you receive that help or not. It's awarded based on how your conditions affect you and not on a any diagnosis.

born_again

When you appeal your accommodating family get a chance to send a letter in each explaining how it effects them & you.
I would advise to do it online, as you can upload evidence etc. As well as being quicker to submit.

Quote from the appeal site.
Someone who lives with you or knows you well you could write a statement or letter. A useful statement describes how your condition affects your life and includes the types of activities you can and cannot do. It should be their own view. It should also be focussed on the time that the DWP made their decision about your entitlement to benefits.

That will be far better than a letter from a GP that really has no idea on your daily life.

MalMonroe

I would definitely appeal. My daughter has suffered from ME for over twenty years and the biggest problem still is that people don't believe it is an actual, real illness.  Even most GPs.  

From experience, I know you do have to go into every little detail and what Poppy12345 says, "You have to explain in detail and give those real world examples for each activity/descriptor that applies to you. Tell them why you can't do this activity and what happened the last time you attempted to do this when you really felt like you couldn't do anything but made yourself do it because you were so hungry, you had no other option" is absolutely spot on.

Nobody ever wants to know what your doctor thinks, and if you ask for a letter from a GP they will charge you for it. But again as Poppy says, it's irrelelvant.

Also, most applicants for PIP fail at the first submission and have to appeal, after which it is awarded. I think tax payers need to be made aware that this is a regular occurrence. People who really are entitled to benefits have to beg and beg again to be given them, and go through hell before they can actually receive them. And they DO receive them, eventually. So it most definitely is worth an appeal.  If you can get yourself an advocate through Citizens Advice, so much the better. They really are effective and knowledgeable.