PIP appeal seemed to be bringing up my partners claim, when it was my application

MartBear

Hi,

So I'm a carer for my wife, she has long term disabilities and it took us a LONG time to get her PIP, as she was refused multiple times, and then we needed to wait 14 months for an appeal, where the judge and doctor there agreed she was entitled to enhanced daily living, and standard mobility. (she'd originally scored 0 points for both) The payments have been a god send, making her life much easier, allowing her to get what she needs and also helping massively with travel etc.

We've had them for years now, and she is due a review, which she was told about in August, but just got a letter to say it may be 2026 before it is reviewed now due to backlog.

I applied for PIP myself in 2023. I suffer from debilitating migraines, and chronic neck and back pain. Some link between them has been found, but i've basically been suffering with this for a decade and going through a ton of medicines and even some medical trials (my NHS history lists over 80 different medicines/doses I have tried) including one I'm currently on. Whilst speaking to the people arranging the trial, I had to give diaries and HIT scores for how headaches affect me, and it was suggested I apply for PIP. I'd never considered it, because I manage to force myself to do whats needed to look after my wife and son, but every day is a struggle, i wake up every day with a headache and I have to be incredibly picky about what I do and dont do, to avoid anything which may cause a further headache to start, and possibly progress to migraine or cluster headaches. Its hard, but I've gotten used to it. I was informed its not normal, and I should be able to get some help from PIP. I looked around, and found others who have somewhat similar issues, who were successful in getting PIP so I gave it a go. I scored 0 points. I of course appealed it, knowing how quick they are to hand out zeros. the appeal scored 0, despite plenty of evidence of treatments and hospital visits etc, they said i was currently not under any treatments. I gave in. But to my shock two weeks ago I got a letter telling my claim was going to appeal court this past Tuesday. I assumed id get no further, but thought I may as well go anyway. They turned me down again, i'm not surprised, as I always knew getting it for Migraines would be hard. Scoring zero is horrible though, as it feels like they're telling me that living in a way that i have to micro manage every decision to avoid breaking down, and not being able to be a carer, is a completely normal way to live.

what has bothered me since, however, is the PIP panel member who was with the judge. They asked about holidays, and I explained we go on a coach holiday once a year, we get a taxi and the driver carries our bags. when we get to the coach, the staff take the bags and we dont see them again until they're in our room at the hotel. it felt like the question was asking about how i cope with lifting because of my neck pain, but questions were there such as "how does your wife cope on a coach for X amount of time" "is you're wife able to be suitably looked after on the coach if a problem arises" "what would you do if you were away and you're wife had an issue with her mobility, if she only takes her sticks and not a wheel chair"

these could be about me, how would I help her physically if shes not got the chair... can i look after her on a coach is pretty general. But asking how well she would cope? something about the questions has just bothered me since the appeal, everything had been focused on me and my day to day activities but the sudden change to my wife, and seemingly trying to find out how she copes with travel etc. With her review coming up, are they able to cross reference applications? in my application, I mentioned I was her carer, and her condition, but apart from help with day to day activities I never mentioned any mobility issues. Now I'm concerned that anything I said whilst being a bit flustered in the appeal, may come back to affect something in her review.

Is that something they can do? or am I just getting seeing something thats not there. There's a small chance I mentioned her having mobility issues in the court appeal, I suffer with anxiety so rarely manage to do anything for myself like this (i have no issue doing it for my wife, but see myself as a waste of effort I guess. I am getting better for it) but the anxiety causes me to get a worse head, and I do occasionally forget things mid conversation. But I'm 90% sure i didnt say anything.

Muttleythefrog

It's hard to precisely understand their questions in relation to your wife but they may have felt it helped them gain facts of your case. They may have tried to get a broad picture or even try to evaluate your credibility for evidence provision. They certainly are not interested in her claim - that's not what was in front of them. They do not work for the DWP - the appeal tribunal is independent and where often poor DWP decisions are overcome (your wife a case in point).

So essentially you applied, got awarded no scoring descriptors... you asked for a Mandatory Reconsideration and the decision was the same. You then went to an appeal tribunal and sadly they found no scoring descriptors. 

My advice.. really have a good look at the activities and descriptors and honestly assess yourself... you may have already done this (and should have before applying otherwise you were throwing darts at an invisible board)... and remember there is reliability criteria involved which means to be considered able to do something you must be able to safely, to an acceptable standard, repeatedly and in reasonable time. For example if it takes 2 hours to get dressed that is not reasonable time. If you feel you should get an award...i.e. get 8 or more points in either Daily Living or Mobility component (or both) then re-apply but focus on explaining your difficulties with real examples that direct towards the relevant scoring descriptors (statements of disability for each activity). Any consistent or supportive medical related documents or reports can help as evidence and I'd be keen to point out the extensive treatments attempted and research you've been involved in... and if not currently being treated point out the reason as there may be assumption otherwise that the issue resolved or isn't so serious. Ultimately PIP is awarded based on the disabling effects of illness or disability but underpinning that often means establishing the underlying conditions.

I assume you have a copy of any assessment the DWP had arranged... really try to understand from any comments in that and  from the tribunal and DWP decisions where things went wrong in understanding your difficulties in relation to the PIP activities. You may benefit from 3rd party help like from CAB (their website is an excellent resource too for guidance on PIP form filling and process etc) in completing application.

peteuk

The issue with migraines are that although they are debilitating, they are more often than not infrequent.  The OP states he wakes up with a headache everyday but how frequent are your migraines?  

How’s does  your chronic neck and back pain affect you? Don’t try and fit your symptoms into the PIP activities, rather the reverse.

I have previously advised others to take a PIP activity and focus on that for a week.  Eg take preparing a simple meal for one.   Every time you cook make notes of the things you can and can’t do something.

MartBear

Muttleythefrog said:

It's hard to precisely understand their questions in relation to your wife but they may have felt it helped them gain facts of your case. They may have tried to get a broad picture or even try to evaluate your credibility for evidence provision. They certainly are not interested in her claim - that's not what was in front of them. They do not work for the DWP - the appeal tribunal is independent and where often poor DWP decisions are overcome (your wife a case in point).

So essentially you applied, got awarded no scoring descriptors... you asked for a Mandatory Reconsideration and the decision was the same. You then went to an appeal tribunal and sadly they found no scoring descriptors. 

My advice.. really have a good look at the activities and descriptors and honestly assess yourself... you may have already done this (and should have before applying otherwise you were throwing darts at an invisible board)... and remember there is reliability criteria involved which means to be considered able to do something you must be able to safely, to an acceptable standard, repeatedly and in reasonable time. For example if it takes 2 hours to get dressed that is not reasonable time. If you feel you should get an award...i.e. get 8 or more points in either Daily Living or Mobility component (or both) then re-apply but focus on explaining your difficulties with real examples that direct towards the relevant scoring descriptors (statements of disability for each activity). Any consistent or supportive medical related documents or reports can help as evidence and I'd be keen to point out the extensive treatments attempted and research you've been involved in... and if not currently being treated point out the reason as there may be assumption otherwise that the issue resolved or isn't so serious. Ultimately PIP is awarded based on the disabling effects of illness or disability but underpinning that often means establishing the underlying conditions.

I assume you have a copy of any assessment the DWP had arranged... really try to understand from any comments in that and  from the tribunal and DWP decisions where things went wrong in understanding your difficulties in relation to the PIP activities. You may benefit from 3rd party help like from CAB (their website is an excellent resource too for guidance on PIP form filling and process etc) in completing application.

When I scored myself based on how I feel I should score, I honestly thought I should get about 6 points. I've gone through PIP appeals multiple times for my wife, so I'm pretty keyed in to what is required for the scoring. After my first application, id have honestly been ok with it if they days I had 4 points, I wouldn't have scrambled to make up 4 more. I asked for the reconsideration purely because they gave me zero. 

I don't even remember asking for the court appeal, that came by shock. I only went because it was one week later. I didn't expect to change their opinion, but wanted to explain my situation more. It was the questions about my wife that are what has bothered me. 

Having now been refused at appeal level, I won't be trying again. My life is hard, but I manage, and I've never thought I should apply until I was told I should. I don't feel like I've been let down by the PIP appeal, just gutted at the score of zero because it makes it seem like my condition is nothing, when it affects me every day

MartBear

peteuk said:

The issue with migraines are that although they are debilitating, they are more often than not infrequent.  The OP states he wakes up with a headache everyday but how frequent are your migraines?  

How’s does  your chronic neck and back pain affect you? Don’t try and fit your symptoms into the PIP activities, rather the reverse.

I have previously advised others to take a PIP activity and focus on that for a week.  Eg take preparing a simple meal for one.   Every time you cook make notes of the things you can and can’t do something.

Migraines are one or two a week, but the head aches are the start of them. Every thing I do, has to be managed to avoid the situation getting worse... Stress, too much heavy lifting, even going up and down stairs too much, or rising out of a bath too quickly. All things that cause the pains to escalate towards migraines. Which was why my expert felt I should be eligible, as I do need help with devices in the kitchen, bathroom, needing access to safe space in town (I volunteer at a charity that understands my condition and jets be leave as needed, and also go there and rest if I get an issue when in town)

The migraines take me out of action for 4-24 hours, sometimes put me in hospital and show up as suspected subarachnoid heamorhage, and lead to me having lumbar punctures. But the every day headaches affect life daily... I'm just used to it now. 

As said before, I didn't think I was entitled to it. I won't apply again. I just don't think it's right I scored zero, and my only concern afterwards was the questions about my wife which seemed to come from info id not shared

sheramber

Questions about how your wife could cope may have been to assess how much your disability affected being able to provide care for her. 

This coukd reflect how much your disability affected your daily life. 

poppy12345

If you thought you would only score 6 points why did you apply? You said yourself that you understand the descriptors. It doesn't make any sense to go through all of that stress for no award at the end. 

Muttleythefrog

MartBear said:

Muttleythefrog said:

It's hard to precisely understand their questions in relation to your wife but they may have felt it helped them gain facts of your case. They may have tried to get a broad picture or even try to evaluate your credibility for evidence provision. They certainly are not interested in her claim - that's not what was in front of them. They do not work for the DWP - the appeal tribunal is independent and where often poor DWP decisions are overcome (your wife a case in point).

So essentially you applied, got awarded no scoring descriptors... you asked for a Mandatory Reconsideration and the decision was the same. You then went to an appeal tribunal and sadly they found no scoring descriptors. 

My advice.. really have a good look at the activities and descriptors and honestly assess yourself... you may have already done this (and should have before applying otherwise you were throwing darts at an invisible board)... and remember there is reliability criteria involved which means to be considered able to do something you must be able to safely, to an acceptable standard, repeatedly and in reasonable time. For example if it takes 2 hours to get dressed that is not reasonable time. If you feel you should get an award...i.e. get 8 or more points in either Daily Living or Mobility component (or both) then re-apply but focus on explaining your difficulties with real examples that direct towards the relevant scoring descriptors (statements of disability for each activity). Any consistent or supportive medical related documents or reports can help as evidence and I'd be keen to point out the extensive treatments attempted and research you've been involved in... and if not currently being treated point out the reason as there may be assumption otherwise that the issue resolved or isn't so serious. Ultimately PIP is awarded based on the disabling effects of illness or disability but underpinning that often means establishing the underlying conditions.

I assume you have a copy of any assessment the DWP had arranged... really try to understand from any comments in that and  from the tribunal and DWP decisions where things went wrong in understanding your difficulties in relation to the PIP activities. You may benefit from 3rd party help like from CAB (their website is an excellent resource too for guidance on PIP form filling and process etc) in completing application.

When I scored myself based on how I feel I should score, I honestly thought I should get about 6 points. I've gone through PIP appeals multiple times for my wife, so I'm pretty keyed in to what is required for the scoring. After my first application, id have honestly been ok with it if they days I had 4 points, I wouldn't have scrambled to make up 4 more. I asked for the reconsideration purely because they gave me zero. 

I don't even remember asking for the court appeal, that came by shock. I only went because it was one week later. I didn't expect to change their opinion, but wanted to explain my situation more. It was the questions about my wife that are what has bothered me. 

Having now been refused at appeal level, I won't be trying again. My life is hard, but I manage, and I've never thought I should apply until I was told I should. I don't feel like I've been let down by the PIP appeal, just gutted at the score of zero because it makes it seem like my condition is nothing, when it affects me every day

I agree you should not apply again then. If you calculate you should not qualify then I would always advise (caveat you understand the criteria well) against applying on the grounds it can be stressful and take a lot of invested energies. I think in retrospect the point is sort of proven sadly.... I'd chalk it up to experience. Obviously if health did change relevant to PIP revisit the criteria in future (which could shift in the meantime!) and apply if honestly calculating you should get an award. Sometimes people mean well in advising to apply for things like this but perhaps are often not well placed to do so.... and may not calculate the effects a poor application or outcome can have.

Spoonie_Turtle

MartBear said:

Muttleythefrog said:

It's hard to precisely understand their questions in relation to your wife but they may have felt it helped them gain facts of your case. They may have tried to get a broad picture or even try to evaluate your credibility for evidence provision. They certainly are not interested in her claim - that's not what was in front of them. They do not work for the DWP - the appeal tribunal is independent and where often poor DWP decisions are overcome (your wife a case in point).

So essentially you applied, got awarded no scoring descriptors... you asked for a Mandatory Reconsideration and the decision was the same. You then went to an appeal tribunal and sadly they found no scoring descriptors. 

My advice.. really have a good look at the activities and descriptors and honestly assess yourself... you may have already done this (and should have before applying otherwise you were throwing darts at an invisible board)... and remember there is reliability criteria involved which means to be considered able to do something you must be able to safely, to an acceptable standard, repeatedly and in reasonable time. For example if it takes 2 hours to get dressed that is not reasonable time. If you feel you should get an award...i.e. get 8 or more points in either Daily Living or Mobility component (or both) then re-apply but focus on explaining your difficulties with real examples that direct towards the relevant scoring descriptors (statements of disability for each activity). Any consistent or supportive medical related documents or reports can help as evidence and I'd be keen to point out the extensive treatments attempted and research you've been involved in... and if not currently being treated point out the reason as there may be assumption otherwise that the issue resolved or isn't so serious. Ultimately PIP is awarded based on the disabling effects of illness or disability but underpinning that often means establishing the underlying conditions.

I assume you have a copy of any assessment the DWP had arranged... really try to understand from any comments in that and  from the tribunal and DWP decisions where things went wrong in understanding your difficulties in relation to the PIP activities. You may benefit from 3rd party help like from CAB (their website is an excellent resource too for guidance on PIP form filling and process etc) in completing application.

… just gutted at the score of zero because it makes it seem like my condition is nothing, when it affects me every day

Unfortunately as you've found, the threshold for PIP is really quite high. 

Plenty of people are disabled by conditions but just not in a way or to an extent that scores points in the way this one benefit is assessed.  Or even the other two disability benefits (DLA, AA) - Scope says 16 million people in the UK have a disability, but at the time of the Cost of Living Payments, only ~6 million people were claiming qualifying benefits.  Now some of those other 10 million are people who would qualify but refusing to apply because of previous bad experiences and/or horror stories; some of those are people who've applied and wrongly been denied and not challenged or pursued it to tribunal - but there are also many people who are disabled yet genuinely don't meet the high threshold. 

Eligibility for PIP is often used as a shorthand for proof of disability, because only disabled people are eligible for it, but not being eligible for it does not mean someone is not disabled or greatly impacted by a health condition.  (If PIP were thought of as a 'test for disability', it would return virtually 100% true positives but also many false negatives.)

peteuk

MartBear said:

peteuk said:

The issue with migraines are that although they are debilitating, they are more often than not infrequent.  The OP states he wakes up with a headache everyday but how frequent are your migraines?  

How’s does  your chronic neck and back pain affect you? Don’t try and fit your symptoms into the PIP activities, rather the reverse.

I have previously advised others to take a PIP activity and focus on that for a week.  Eg take preparing a simple meal for one.   Every time you cook make notes of the things you can and can’t do something.

Migraines are one or two a week, but the head aches are the start of them. Every thing I do, has to be managed to avoid the situation getting worse... Stress, too much heavy lifting, even going up and down stairs too much, or rising out of a bath too quickly. All things that cause the pains to escalate towards migraines. Which was why my expert felt I should be eligible, as I do need help with devices in the kitchen, bathroom, needing access to safe space in town (I volunteer at a charity that understands my condition and jets be leave as needed, and also go there and rest if I get an issue when in town)

The migraines take me out of action for 4-24 hours, sometimes put me in hospital and show up as suspected subarachnoid heamorhage, and lead to me having lumbar punctures. But the every day headaches affect life daily... I'm just used to it now. 

As said before, I didn't think I was entitled to it. I won't apply again. I just don't think it's right I scored zero, and my only concern afterwards was the questions about my wife which seemed to come from info id not shared

So by your own admission migraines are discredited from your PIP assessment as they are not the majority of the time.   My remarks were general remarks, but with questions for the OP.