Would you contact DWP now or wait a bit?

[pipdilemma]

Not sure if this is the right thread to be posting this on but hope some MN-ers might give some thoughts on this.
I've name changed on this for obvious reasons.

So the situation is, I'm in a bit of a pickle benefits-wise. I'm disabled with several chronic illnesses that have left me wheelchair-bound for the last 2 years. I had to seriously fight my corner 2 years ago to access the benefits I was entitled to because of how badly my conditions were affecting me (mobility was shot to pieces, needed a lot of help with daily living etc). Anyone that's dealt with the DWP know they are pretty horrendous at their assessment practises so of course I only got the entitlement after tribunal, getting local MP involved etc. Had to get letters from GPs confirming I wasn't making this stuff up.

Now I've been started on a new medication which suffice to say has been incredible. My main symptoms have got a lot lot better, but other symptoms have got worse. The problem is, according to the criteria on the PIP, I don't currently meet the criteria for the level of award I get for mobility, purely on the fact that this new medication has improved things so drastically, although I've got side effects too. However, what I don't know is whether things might get worse should I have to change medication, or if we find over long-term it isn't agreeing with my body. Also we don't know if the lockdown has actually really helped because the slower pace of life and not rushing around has allowed me to conserve energy etc. I don't know if when lockdown is lifted having to keep up with the faster pace of life again will make things difficult and my mobility will get bad again.

I have an electric wheelchair on long-term hire (as we couldn't afford the upfront cost) and a Motability car with a hoist to allow me to get the chair in and out for using out and about. The car and hoist for my chair gave a huge increase in quality of life as I could then get out and about when I wanted without having to worry about how to get there.

Well done if you've managed to get this far as I realise I've been rambling but what I'd appreciate people's views on is whether you'd contact the DWP now and therefore risk losing the Motability car or whether you'd wait a bit and see how the next few months go. I wouldn't dream of being a fraud in any way, and I don't want to be seen as that but the support the car in particular gives is huge and we couldn't afford it without the PIP support.

Thanks everyone

YABU: contact them now, you're heading into fraud-territory
YANBU: you're not a fraud, wait a bit to see how things go

How long have you been on the new meds?

5 weeks

Are you due an assessment?
Its tricky.
Unless you're running around outside in full view I'd be inclined to wait.

I would wait until your next review tbh

I’d wait for the next review.

I thought you were going to say 5 months! Definitely wait some more. Most just ignore their progress and wait for the next assessment which can be years later.

It's nice to read about someone who is fully honest but this is much too early to be sure that you are indeed better. Give it at least a couple more months.

@pipdilemma

DO NOT CONTACT THEM.

You're not defrauding anyone. And you don't know how these meds are going to pan out. They may start to affect you badly in a few months, or may just not work as good.

This benefit (PIP) is sooooo hard to get. Don't come off it voluntarily.

You (and your conditions) are not better; you are just managing them.

Thank you so much, I almost feel like crying with your kindness everyone. Like everyone on disability benefits, you fear that dreaded brown envelope saying someone has dobbed you in!

Yes it's only been 5 weeks that I've been on the new meds, and no I'm certainly not running around haha! I only dream of being able to do that! But saying that I can now walk which I couldn't do before.

In terms of a reassessment, no I received a letter back in December saying all reviews have been delayed by at least a year because of the pandemic so I won't have my review until April 2024!

You sound lovely!

Look after yourself, @pipdilemmaand don't worry about anything. You sound (like most people on PIP,) that you deserve to be in receipt of them!

I mean you deserve to be in receipt of IT! (The PIP award!)

And @littlepattilou you're totally right in that I'm managing the conditions, not actually cured from them. I have to remind myself that I'm still having to take about 18 tablets a day, only shower once a week because of the fatigue from doing so. I guess this new medication has made me a bit overexcited that I might finally be better from these retched conditions!

Oh bless you @littlepattilou thank you x

Wait til next review.

@pipdilemma

Oh bless you *@littlepattilou* thank you x

.

Five weeks is very early days. And, you have multiple health conditions, not just one, so they'll have all been factored into the assessment.

In the meantime, enjoy having some improvement to one of your health conditions.

Definitely don’t say anything - you’re not doing anything wrong at all.

5 weeks is far too soon to judge how things will go longer term and your conditions haven’t just disappeared, even though you are currently having improvement due to meds.

The absolute last thing you want to do is put your benefits in jeopardy. I hope things go well health wise. Maybe reassess how you’re feeling in 6 months and then talk about it with your gp.

Wait until your next review, hopefully the new medication will continue to work and the other symptoms will improve as your body gets used to the new medication, its only been 5 weeks so do not put yourself in the position of having to fight your corner again if you lose your PIP, which could set your health back further. Look after yourself and its not fraud, the whole point of PIP is to give you independence, which if you lost your car you would lose.
Good luck with the medication x

Please don’t contact them your not being dishonest tomorrow you could have a really bad day, take it one day at a time, hugs and don’t worry you’ve got your money deserved, you’ve only just started new meds.

Please wait before speaking with DWP.

You've admitted yourself that you can still only face one shower a week and you have no idea if the faster pace outside of lockdown will be manageable.

DWP will immediately drop the payment and with the delays it could take what will feel like forever to get it back if in the meantime your body decides the drugs aren't great, or it turns out you're just in the honeymoon period where because a small amount of pain has disappeared you feel on top of the world.

It's been just 5 weeks, give your body and the medication a chance to figure this out...no less than 6 months based on my experience with chronic conditions and medication.

I would wait until your next review. For my sons DLA I answer as if he is having his worst day as that is the reality. Some days are better some aren't BUT he still has those bad days. It's great that you medication is working however you may still have these bad days that will require you to use the hoist etc.

Don't contact them yet. Your condition could fluctuate (many do) and you don't yet know if the improvement in your mobility will be long-term or permanent. Although I hope it is.

Wait to review , its not really long enough to be sure if its a permanent improvement & sounds like you are still struggling in some areas. Talk to welfare benefit advisor but i expect the change in condition may trigger a new assessment which could result in losing payments & support receive now.

Those that won on tribunal didn't get the automatic covid extension to reviews and have full new claim form again rather than the short review form if DWP awarded it. Which feels like they still don't fully accept the judgement of the tribunal.

DWP are only reassessing me 3 months before current award payments end and of course it takes upto 16wks before they even review form to do a phone assessment. I highly expect it will be another load of bullshit and end in a tribunal again. I've been told local tribunal courts are now at a year waiting list and whole thing took just over 18m last time & was very damaging to my mental health.

No, don’t contact them.

You’re not cured. You’re not suddenly able-bodied. You’re just (currently) adequately medicated.

What a lovely supportive thread.

What a lovely supportive thread.