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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Would you contact DWP now or wait a bit?

38 replies

pipdilemma · 23/02/2021 14:41

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

OP posts:
MawnyStannit · 23/02/2021 16:50

Exactly what ChristOnAPelaton says.

BlankTimes · 23/02/2021 16:52

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

PIP is very different to DLA, PIP forms ask you to submit a diary, so they can see the frequency of the worst days and fluctuations within days, so they can award accordingly.
I'd never advise anyone to say their condition was always as bad as a worst day.

pipdilemma please wait a good length of time before telling DWP you are "cured" this new med seems to be amazing right now, but you don't know what its effects will be 6, 9, or 12 months down the line, or how its effects on your other conditions may impact you, even though due to the meds now, there's a change in one of them.

Wait and see, Flowers

msbevvy · 23/02/2021 16:55

5 weeks is far too soon.

I felt like a new person after I got some new medication for my fibromyalgia. Unfortunately I developed terrible side effects after a couple of months and had to stop taking it. This was several years ago and I haven't found anything else that works.

Boredof2020 · 23/02/2021 17:04

Wait until the renewal. And keep notes not the bad days xx

sereema92 · 23/02/2021 17:17

5 weeks is way too soon to say anything. However if your review is not until April 2024 please don't keep quiet until then if the medication continues to work as that would be deceitful.

RandomMess · 23/02/2021 17:23

I would be wanting see how you do over the next 12 months tbh!

recklessruby · 23/02/2021 17:33

PIP is so hard to get. Dont contact them yet as its early days with your new medication.
I would worry that any contact now would trigger a review and maybe suspension of mobility which would affect your car etc.
And assessments are being delayed due to covid so you don't want to find yourself stuck in a queue in the system.
You sound entitled to your benefits so dont feel bad continuing to receive them.Smile

minniemoocher · 23/02/2021 17:37

Do you still need the wheelchair for longer distances? If so do not contact them until your next review however if you stop using your power chair you do need to tell them to avoid potentially being accused of fraud. 5 weeks is nothing though, wait 3 months and ensure you have spoken to your consultant to ascertain that you are staying on them.

NonsensicalHair · 23/02/2021 17:38

Definitely don't contact the DWP yet. As others have said, you need to be on these meds for a much longer period to accurately assess how they are affecting you. It's great to hear that you've experienced some improvement though (not so great that other symptoms are worse thought!) As you said, you really had to fight to get what you were entitled to previously, you really DON'T want to be going through that again - just remember the stress!

You're not defrauding the DWP, you're receiving what you're entitled to and hopefully, it makes your life a bit easier. Wait and see how things go.

FreezerBird · 23/02/2021 18:00

To claim PIP, you have to have been having difficulties with mobility and day to day living for three months, and expect these difficulties to last for a further nine months - so flipping that round I would think at least three months to properly assess the new medication would be reasonable, and maybe longer.

CandyLeBonBon · 23/02/2021 18:02

@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

We received a notification stating that no pip reviews will happen until January '22.
Effinell · 23/02/2021 18:03

We've just been considering this with DD. She had an operation in September and by November she was able to walk unaided just in our house to the toilet. I'm glad I waited and didn't contact them because 5 weeks ago she took a turn for the worse and can barely move never mind walk. I would wait and see its early days but I hope it continues to work for you Flowers

itsgettingwierd · 23/02/2021 18:03

I'm sure there is a timeframe before changes are reported.

It had to be long term improvement and expected to remain that way for I think 6 months.

The same as when things go the other way!

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