Pip application - is it worth it?

[Foxy]

Hi all,

Just wondering if anyone had been awarded PIP based mainly on cognitive function and fatigue alone?

Had to cut my work down from 30 hours a week doing a physical job to 24 hours a week doing an office job.

Fatigue plays a large part for the swap as well as some hand/arm weakness. I would never pick up a pan of hot water for example, just in case. I get confused and overwhelmed easily and find I have to work so much harder than the next person to be organised or concentrate. I have lists of lists, but forget where I’ve put them. I run all my purchases through my husband, because I have previously bought the same pair of trainers 3 times over 6 months.

I have read so many posts from people who have been declined with far more symptoms and disabilities. I feel that I will fail because my difficulties can’t be seen or measured. I also don’t have any medical reports to back it up except the number and location of my lesions.

Is it worth trying?

Thanks

Jackie

[GCCK]

Hi Jackie
You could try but it will depend on what your medical reports do say.

Forgive me, but what you’ve described could be construed as anxiety or panic or something else. I’m not suggesting for a moment that would be the case, but how would it sound to an assessor? Do you see what I mean?

For PIP, they want to know about the things you can’t do or struggle to do. The Personal Independence Payment is to compensate for the difficulty you are having in normal life and help you to be independent. It’s not about the diagnosis itself.

Without official corroboration by means of medical reports from your MS Consultant, a Physio, GP or all of them, I’d say your chances of success are slight at present. Also, is your MS Progressive or RR? RR cases seem to have a harder time of getting PIP because their symptoms aren’t permanent, therefore they are more interested in the best case than the worst case. Not entirely fair but seems to be the assessment trend.
Graeme

[Foxy]

Thanks for your answer. It’s pretty much what I expected to be honest.

Firstly, I took everything exactly as you meant it, factual.

I thunk there is a danger that I would reach down the phone and strangle anyone that said this is because of anxiety or scream at them if it were face to face. It situation gets me so frustrated, it makes me very upset. It’s exactly what I was told by the doctors for numerous years until finally and to be honest, thankfully, I suffered a spinal relapse and struggled to walk for a few weeks. I was so grateful that it had finally affected an area that caused a symptom that was undeniable and visually apparent.

My symptoms are almost all cognitive and are unfortunately permanent now. Years of being undiagnosed and then two MRIs a year apart (Covid played a part in the delay) meant they found it was highly active and they put me straight onto second line.

In my 20s and 30s I did not suffer anxiety, stress or any of the other labels they put on me from late 30s onwards.

I won’t bore you with a list of the difficulties I have, my MRI reports arent specific with my cognitive problems. Rather vague about that really. They actually say that I only presented with pins and needles and feeling like walking through mud.

I know it’s a controversial thing to say, but sometimes I do wish that I struggled to walk rather than struggled to think. I have said as much to my nurse.

Thank you for your time and answer though.

Jackie
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[Foxy]

Oh and yes, I’m RR

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[fred99]

I have been effectively out of work since April 2020 (Covid came along and destroyed the specialist work that I have been doing for 40 years) and as I am “self employed” have not been able to get a single £1 of help.
Used to work away from home travelling between 900 and 1500 miles per week to specialist work sites
With MS, and my age, as well as medical appointments at least 1 per month it is impossible for me to get other work.

[GCCK]

You may need to ask your consultant (or be nice to his/her medical secretary) to write further reports or qualify the previous ones. Some consultants are good at writing factual medical reports whereas others go further and write the “which means that…” bit at the end of each section. That’s the bit that an assessor could get hold of as it takes away the requirement for detailed medical knowledge when they write their report.

Also, when describing your RR, mention the frequency & duration of relapses and how / whether it has affected your life. How “normal” are you in remission, is there progression after each relapse etc?

[Foxy]

Hhmmmm.

So I haven’t officially had a relapse since June 2022, which affected my legs for the second time, so maybe I now have 2 spinal lesions? On my second MRI (done before said relapse) they found that whilst some older brain lesions were no longer active, some were highly active still with some highly active new ones on top. I do get confused about this part. I know that if I struggle to walk tomorrow and feel like I’m walking through treacle, that’s a probable relapse as it’s not something I suffer from otherwise, but what do you class the above brain lesions as? One continuous relapse? Not a relapse but just ongoing damage? I’m now on Tysabri, so monthly injections. I’ve had 3 so far and I’m not due another MRI until October.

It’s left me with an awfully short memory, regular mind blocks, unable to find words, get lost if I drive an unregular route and need sat nav regularly, easily confused, unable to multi task, difficulty focusing and concentrating, all which can lead to me feeling overwhelmed. My patience and intelligence is not what it was, though I was never an Einstein, I wasn’t stupid either.

To accommodate, my husband has to remind me to take my medication as well as watch me do it. If he doesn’t I will get distracted and maybe not take it or forget I’ve taken it or not be able to remember either way!! He does most of the driving now, I only drive to my place of work, my friends house and my sons house. He helps a little in the kitchen because I won’t pick up pans of hot water etc in case I drop them. I tell him anything I’m buying in case I’ve already bought it (I have 2 pairs of the exact same trainers and nearly bought a third, wouldn’t mind but I didn’t like the first pair!!). He has to keep an eye on my food shopping too for the same reason. I don’t like to socialise without him or my sister, I get stuck on what I want to say or I have to google, they help me without it being obvious. I can’t plan too far ahead. If I am planning for this weekend, I haven’t got the brain space to plan out next weekend too.

That all said I’m good at my new job. I talk to people a lot, but that’s ok because I’m pretty much saying the same thing to each one. My office has a door with a blind so I can close everything out in order to concentrate. My boss is aware my memory can be short so reminds me if I haven’t done something or prods me in the right direction.

I don’t think there is enough provision for the cognitive issues that can be equally as disabling as the physical ones. I guess because it’s hard to quantify, but still.

I will have a think about your ideas, but I’m leaning towards it being a huge amount of effort for only the tiniest possibility of success. Thanks for your help anyway though. Much appreciated.

Jackie
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[JoeyC]

Hiya,

I would say go for it, but only if you’re feeling strong as in my experience, it is not for the faint hearted.

I spent a year in the process and was finally awarded PIP, following a tribunal, which was nerve racking.

The whole process took it’s toll on me to be honest, but I was determined to keep going, as MS affects me every every day. The key is being able to evidence that. Don’t do yourself down. If you need help remembering things or cooking then say.

The DWP probably won’t believe you but if they don’t make sure you apply for mandatory reconsideration and then appeal. The majority of appeals are won. Be strong, be brave and remember that you are deserving of this as MS affects your daily life and that’s what the benefit is based on.

[Foxy]

What a very motivating answer!!!

Yes, I guess I have nothing to loose. I will speak to the nurse on my next Tysabri injection and see if she has any suggestions as to how I could evidence things.

If there is one thing I find all people with MS have, it’s the patience to continue in the face of adversity!

Thank you so much, a virtual kick up the bum was just what I needed.

Jackie
Xx

[Apricot60]

Hi Jackie,
Even if your only problems were anxiety related, if they are impacting on your life then it is worth trying for PIP.
You obviously have other, diagnosed medical conditions.
I went through the PIP process recently and it is HARD.
The report that came back after my telephone assessment bore no relevance to what I had said to the assessor.
I appealed the initial report which had left me 1 point short of an award.
My appeal was turned down so I requested to go further to a court hearing. About 1 month later I was called and asked if I would like to accept the lower rate of the daily living component or continue on to the court hearing.
I started my request in April and got this result in January of this year, so it’s not a quick process.
I got most of my help from a site called BENEFITS AND WORK, which I personally think you may find of some help.
I will be re assessed in another 2 years and will push even harder next time to get at least part of the mobility component, but for now I am happy with what I’ve been offered.
It is hard going though and very stressful.
My daughter asked her assessor if she could record the interview and she said it was ok, so I would go that route if possible as you have something to fall back on if you think you’ve been ignored or misquoted.
All the best.

[Gb37]

Hi, it takes a long time to get through to them but it is worth it. You have to take it on your worst day. I’m much the same, fatigue, which can affect other things and it’s a vicious cycle. I had to cut my hours too. But fatigue can be so debilitating its really hard to explain to someone with out ms, you almost have to exaggerate a bit when you have your assessment.
The only thing I didn’t get was mobility part, but only because I’m not in a mobility scooter yet. Hope this helps

[Foxy]

Done! I applied on Thursday so we will wait and see.

[GCCK]

Just had another thought…

We know that whilst certain lesions can cause cognitive impairment, we also know that MS-sufferers experience a much more rapid loss in brain volume compared to a non-MS-person. If you have MRI’s going back long enough and they are still available (and not archived or worse, discarded), perhaps your consultant could express an opinion in writing which would state that you had experienced a significant reduction in brain volume.

No idea how measurable, how valid but it’s a theory…

Good luck with the application!

[Foxy]

Thank you! Definitely worth a thought.

I’ve had two MRI’s that were 8 months apart, the second being with contrast. It says in the 2nd clinic letter that I had lots of new lesions and older ones were unchanged so the put me straight on Tysabri. I’m hopeful that the MRI reports will be helpful for this. Thinking about the form, I don’t think I talked much about fatigue, which is a huge issue.

I fully expect them to turn me down, in which case I can appeal and mention the things I feel I missed.

[Foxy]

I got a letter today from PIP with an appointment for a video assessment on Wednesday 10th May.

I did make it clear in my application that my physical struggles are minor and that it is my cognitive struggles and fatigue that are the problem. I know you’ve all said about your worst day and I will mention that very occasionally I may ask my husband to just hold my hand to step out of the shower or, also very occasionally, may ask him to carry a hot pan of water if I’m not feeling confident, but I don’t want to make it sound worse than it is. I walk my 4 dogs twice a day and also cycle sometimes for up to 8 miles and wouldn’t want someone thinking they have ‘caught me out’.

Any hints or tips from anyone? Things I should mention? Ways of wording things?

Thank you!

Jx

[GCCK]

Honestly, if you are walking your dogs 2x a day and cycling 8 miles, you have an awfully long way to go yet. Wait till you can’t go round the supermarket without a lie down afterwards. You’re still fitter than most fully able people even if by your standards you are diminished.

Sorry, but maybe give it a bit longer?
Graeme

[Foxy]

So it has to be a physical disability only?

It doesn’t matter that I have the memory of a goldfish? Have to have my husband remind me to take medication? Have to run all my financial decisions by him? Can’t travel any route other than one I am very familiar with or I get lost, even in my own town that I have lived in for 15 years? Have zero concentration levels so am unable to plan more than one thing at a time? Struggle in a social situation because I repeat myself, forget my point half way through a sentence or can’t remember the name of what I am trying to talk about? Had to give up my job as a care assistant because the physical side of it was too much and would wipe me out? Gave up another slower HCA job because I forgot how to do a simple but important thing? Moved to an office job which requires planning and concentration and STILL STRUGGLE? Regularly can’t make it past 7pm or a cheeky nap because of my fatigue?

Hopefully the assessor is not as short sighted and will understand that cognitive issues can be just as disabling as physical ones.

Sorry for getting on my high horse, but you have no idea how frustrating it is to hear that I’m ‘not that bad’, particularly from a fellow sufferer.

Jx

[GCCK]

Hi Jackie
I’ve just re-read the thread from the top and am sorry I latched onto the fatigue side. In conversation, I’d steer clear of the fatigue issues, on which I think you’d struggle to make a case, but it does sound like you have some real cognitive issues and would be better placed to concentrate on those in your discussion.

I refer you back to my earlier answers about the importance placed on reports produced by professionals such as your MS Consultant. Without the weight of such documents, it would be very unlikely the assessor, who will not be an MS specialist, will go out on a limb and make such a judgement on their own.