First PIP claim - medication causes issues - any advice please?

KittenChops

Hi all,
Would be incredibly grateful for any advice with regards to this...
My husband has today called the PIP new claims line (unable to do online where we live)

Context:
In Dec 2023 he was diagnosed with a neurological condition & prescribed medication A. He was able to kind of function on this drug; physically he was extremely tired / dizzy, mentally he struggled processing & articulating. Despite this, he started a new job 3 or 4 weeks after diagnosis (previously unemployed). The dosage was increased weekly up to the maximum (side effects noted above increased in line with this) at which point he had an allergic reaction to it & had to stop taking it immediately (severely impacted liver function). He handed his notice in because he felt he couldn't do the job properly - he'd only been there 2 weeks.  This was mid Feb 2024.
Once medication A had cleared his system completely, he started taking medication B.  This is where it got worse. The dosage was increased over 2.5 weeks until he was on the max dosage, by which point he was like a zombie. This carried on for about a month or two. He saw the doctor again & they agreed he should gradually reduce the dosage again - he did this & he's now on approx two thirds of the max dosage, not quite as zombie-like but it's still having a severe impact.
He is on the waiting list to see a neurologist (since Jan 2024 but no appointment as yet), there's only so much a GP can do for this condition.

So my question is - it's not so much the condition that's stopping him (although the condition is horrific when it flares, but the meds are mostly stopping the symptoms), it's the medication - is this still a valid reason to be eligible claim PIP?  I've looked at the descriptors online & I believe he has trouble with 'communicating verbally' & 'engaging with other people face-to-face', as well as being unable to drive (and we live in a very rural location). His memory of the last 6 months is terrible.

(edited for spelling mistakes)

born_again

As you notice. PIP is based on how you can fulfil daily tasks. Rather than what condition he has.
So all you can do is fill each section in giving how he completes the tasks or requires help etc. Actual real life examples help a lot.

So get it filled in & sent back. it is then a waiting game to see if you have to have a assessment or they can just do a paper based one.

Spoonie_Turtle

Yes, medication side-effects are considered for PIP.  If he didn't have the health condition necessitating the medication then he wouldn't have those difficulties.

I don't know how thoroughly you've looked into how PIP is assessed (you mention having looked at the descriptors) so apologies if you've already read this guidance - but in case you haven't seen it, this is the full guidance which details how the activities are assessed and the exact scope of them
https://www.gov.uk/government/publications/personal-independence-payment-assessment-guide-for-assessment-providers/pip-assessment-guide-part-2-the-assessment-criteria
Note especially the RELIABLY section

This is tailored towards mental illness but a fair amount could be applicable with the cognitive effects of his medication https://www.mentalhealthandmoneyadvice.org/en/welfare-benefits/pip-mental-health-guide/help-with-your-pip-claim/how-to-fill-in-the-pip-form/


(Just to be clear as you mention working, PIP is nothing to do with whether someone works - although as part of the overall picture of his life it is worth mentioning and in this specific case, how the medication affected him being able to work is relevant as evidence of disablement.  It won't score any points of course, but will help paint a consistent picture which lends weight to the claim.)

KittenChops

@born_again & @Spoonie_Turtle

Thank you both for replying so quickly

So, since I started this thread...

On calling the PIP new claims number, he was told he'd get an email with a link to an online form to complete (despite government website saying unable to do online here), which he has received, but not looked at yet.  The person he spoke to said he needed to submit 'supporting evidence' with it, so he called the GP surgery to request this - they said to come & collect it but there may be a charge - so I drove him there, and after a confusing start to the conversation with reception (a charge for a sick note was mentioned?), then they gave him 2 A4 pages - one listed his current meds & confirmation of condition being diagnosed, the other listed the last 5 contacts with them in the last 2 weeks (1 was a standard text they send to everyone when closed for staff training, 2 were texts about prescriptions being ready, and the other 2 were just dates & times of phone appointments). So probably not what he needs...

I'm starting to doubt if this was a good idea. He's now stressed & confused, with his head in his hands. I should have looked into this more beforehand...

Now I've looked at the link in Spoonie_Turtle's post - I don't see how he'll be successful in a claim?  Before the meds were reduced to the current level, he couldn't do any of the things (aided or not). Now, he can (for example) cook a meal, wash/bathe (even go upstairs) unaided etc. The parts that I thought he would score points for, now that I've looked at the detail, I'm not sure he would - for example 'engaging with other people face-to-face' - we went out last Saturday afternoon to meet with a group of good friends for the first time this year and my previously extroverted, confident husband felt unable to talk to anyone and I took him home after an hour... 

In terms of the mobility activities - I guess 'ability to leave the home and embark on a journey' is relevant? (But it was our choice to live in such a rural location, pre diagnosis.)  In terms of driving, if he times it right between dosages (9am & 9pm), he's maybe (on a good day) got a small window in the afternoon where he could drive to the nearest shop (3 miles) & back - but definitely not drive to a job in the morning & back in the evening (let alone actually doing that job).  I certainly don't think he should attempt a longer drive.  In terms of walking, there's nowhere within walking distance. So maybe apply for mobility only?

I feel as though I've raised his hopes - PIP was my idea because he's been stressed & upset about not being able to contribute financially, and I remembered reading somewhere about a particular person felt getting PIP helped them feel like they were contributing even though they couldn't work...

Sorry this is more waffley that I would have liked...  If it help with any further advice, the condition is trigeminal neuralgia & he's on pregabalin.  Even the leaflet that comes with it says you should be used to the side effects in a few weeks, but it's been nearly 4 months. The GP says he can't prescribe anything else, only a neurologist can.

Spoonie_Turtle

Much of PIP is a notional test, the question of 'could you do xyz?' regardless of the actual circumstances in your life. 
So e.g. for mobility, if you lived somewhere you could walk or take public transport to places (shops, the park, etc.) the question is would he be able to reliably do such journeys by himself?  (Rhetorical, for you to think about.)

The section on reliably might be really important - just because he managed to socialise once doesn't necessarily mean he'd be able to every day.

The other daily activities, again with reliability - can he do them safely, without needing prompting or supervision (because of the cogbitive effects of meds and/or pain), in no longer than twice the length of time it would take a nondisabled person? 

And an important factor people often overlook is the effect doing one activity has - does doing X activity then impede his ability to do Y activity afterwards?  (Again these are all rhetorical!  Just to think about for whether to proceed with the application.)

It is possible he might not qualify as the threshold is quite high, and lots of people are ill and disabled and don't qualify.  But equally, lots of people don't think they qualify when actually they would. 
Give it some time to really think about all the factors, not just the activities in isolation.

Re: supporting information, it can help - diagnosis confirmation particularly - but it's not key to a claim so don't worry about not having much to send.  Has he been referred to a neurologist?  If so and if he has any letter to say about it, that would be useful too.  Or if no paperwork but he has been referred, that's exactly the sort of thing that goes in the 'other information' section.

poppy12345

Your ability to drive is not considered in the PIP descriptors. 

Savvy_Sue

It might be useful to see if you can get some help with the forms, and certainly there's no reason why you can't make a first attempt at the forms without necessarily involving your husband. I say this because the whole process can be quite depressing: the focus is on what the claimant CAN'T do, and in order to survive one can't spend too long in that head space! 

I think others will have other ideas, but seeing if there is a 'benefits and work' adviser at your local council or at Citizen's Advice might be worthwhile. 

born_again

Savvy_Sue said:

It might be useful to see if you can get some help with the forms, and certainly there's no reason why you can't make a first attempt at the forms without necessarily involving your husband. I say this because the whole process can be quite depressing: the focus is on what the claimant CAN'T do, and in order to survive one can't spend too long in that head space! 

I think others will have other ideas, but seeing if there is a 'benefits and work' adviser at your local council or at Citizen's Advice might be worthwhile. 

I found it is better to do it for the other party. I fill it in for the wife, as no one would be able to read anything she wrote (mines bad enough), would take months for her to do. Even typing on a computer is a big struggle.

So OP, fill it in yourself, as you have the best idea what they can & can't do. Human nature is such that many will say they can do something even if takes all day & they are in pain doing it.

Discuss it afterwards & stick to your guns about the truth.

Danien

If you're looking at any task, you need to consider can he do it repeatedly, reliably and safely. If he can't then explain the difficulties he has. It sounds like the side effects effect him pretty badly still. My advice would be complete the form, consider carefully reliably, repeatedly and safely and ask if you are unsure about something,  or to get help on how to write something.

teddysmum

Many of the medicines used for neurological conditions have side effects and when I first met my neurologist, I had a change very regularly.
I have been on Pregabalin for over 3 years and the only effect is weight gain for me. My neurologist took me off it for that reason, but before my operation I was given it by a surgeon in A&E. I told him about the weight gain but he said that with Paracetamol, which I hate, it works better, but the other option was unbearable pain, anyway.

My worst drug was a relative of Pregabalin, which made my legs swell so I couldn't wear shoes after about 4pm. It wasn't a neurology drug, but a common one for diabetes, which gave me a brain fog. it wasn't imagined, as when it was changed my word mixing stopped and when I mentioned it to my husband, he said that he had actually noticed.

I jokingly told the neurologist that I was his guinea pig, but he said that we would eventually find the one. I'm surprised that a disease bad enough to earn PIP is not bad enough to deserve a consultation.