Hi, my name is Bertie1981! I'm new here and need some advice.

Bertie1981

Hello all,

I need some advice please on PIP and a text my partner received yesterday

Rosie_Scope

Hi @Bertie1981, welcome to the community 😊

What kind of advice do you need? Lots of our members have been through the PIP process so I'm sure you'll find the community helpful. Feel free to ask any questions!.

Bertie1981

Hello Rosie,

Thank you for welcoming me to the community 😊

So my OH received the standard, "your PIP review is complete" text yesterday morning at about 8am. His review was actually due beginning of June but as we all know, they've been behind in making decisions. He's not had an assessment or anything so we're hoping (everything crossed!!) that's he's continuing with his award. He received his normal PIP payment today too. I know of people getting that text then not getting their payment the day after so is this a good sign or??

He's been in receipt of standard in both elements for the past 9 years. He's only had one other review and that was during covid in June 2020. It was a paper review.

We use a local disability charity to help him fill forms in and nothings really changed. His meds have been trial and error and he's back on the original meds he was on at the time of his last review even though he had been tried on different ones in between which we have mentioned. The only thing that's really changed is his mobility. And his mobility has got worse. But for everything else we just put no change (as advised) apart from mentioning his eye conditions (glaucoma, he gets corneal eye ulcers etc) but we got told to focus on his main condition which is his rheumatoid arthritis because that's an ongoing thing which impacts him the most whereas his eye conditions even though recurring, they aren't a long term thing and his glaucoma is controlled. For now. (he's had to have 2 rounds of laser surgery on his eyes because of the pressures being way too high)

But this is the odd thing... Weve recently been moved over to UC via managed migration. He's had to fill in a UC50 which we got help filling in and we've put everything on there. Also sent in a list of his medical history which includes him almost losing his foot and having further op in 2017 to correct some more issues he was having which has actually made his foot even worse 🤦🏽‍♀️. PIP already aware of this. Now this UC50 form had to be back in yesterday. The same day he got the review complete text from PIP. We never put a phone number on his PIP form because he hates speaking to people on the phone but low and behold he got a text from them yesterday at 8am. Have they been waiting for the UC50 form going back to UC to help them decide on his PIP claim? Maybe just a coincidence but you never know do you...

Can anyone shed a bit of light for me please because we're not sure whats happening. We've not heard anything on UC journal regarding his WCA or had at letters. He's also not heard anything else from PIP but tbf they did say 2 weeks on the text and he won't call them to find out. It's nerve wracking waiting to find out what's happening. His condition is never going to get better, hes peppered with lumps and growths (rheumatic nodules) , his foot is shocking, his immune system is **** and lives in pain daily despite the meds as he cannot take NSAIDS due to rectal bleeding.

Any thoughts/advice welcome. Thank you

Rosie_Scope

Hi @Bertie1981, as far as I'm aware the two benefits don't often communicate to each other, so it may just be a coincidence that you heard back from PIP at a similar time to sending in your UC50. I could be proved wrong, though!

If he didn't have to have an assessment for PIP, it can just mean that they have enough information to make their decision on paper. This isn't necessarily a good or a bad thing, it's often looked at on a case-by-case basis.

Was it ESA that your other half was on before? If he was in the support group it may be that he doesn't need to have a WCA and will be put into the LCWRA group automatically. There's a post about managed migration written by one of our members that you might find useful to read through:

UC managed migration guide — Scope | Online Community

Would your other half feel comfortable writing a message on his online journal for his UC? Sometimes you can pop messages on there to ask what's going on if you're not sure about something.

It's really difficult to give timelines about these things as they vary so much from claim to claim, but I hope you'll hear back sooner rather than later and fingers crossed that it his PIP award continues on as normal 😊

Bertie1981

We were actually on income support. I claimed it as a carer. He had assessment for ESA with ATOS and thr lady who did it was a nightmare. While we were there we she googled his meds that he was on at the time (gold injections) and tried telling us she believed he'd be cured of his arthritis. So when his decision came through for ESA she put that down as the main reason why she's scored him 0 points! We we then faced with a decision..appeal it or me claim income support as a carer and get them off out case because after that awful medical we felt totally deflated but I'm starting to wish he'd appealed it now. .

Needhelpandadvice

@Bertie1981 It would help if you actually said what the text message said.

Bertie1981

It said PIP review complete, you'll get a letter in 2 weeks, don't wing as we ring be able to tell you and don't forget to contact us if circumstances change. Just basically the standard text

Rosie_Scope

Sorry to hear that @Bertie1981, that must have been stressful! I can understand why you didn't want to fight it at the time, the whole process can feel exhausting.

I'm not too sure on how migration works for Income Support, but as the UC50 has only just gone in, you should hopefully hear back over the next few weeks or so whether he'll need a WCA. But as I said earlier, if you're worried it might be worth popping a message into his online journal to see if they can clarify things for you.

Bertie1981

Thank you Rosie. It's never easy when dealing with DWP. Tbh though I thought the transfer to UC would be stressful but it's actually not been. It was more stressful a few years ago when he tried to claim ESA. I've never ever known anything like it. We'd heard the horror stories but never thought it would happen to us and unfortunately it did. She didn't have a clue.

We got moved to UC via tax credits. (we used to get child tax credits) It was them who sent us the letter about managed migration over to UC. So our migration has been through HMRC not DWP even though we were getting Income Support. Confusing eh.

OH has had to go to a meeting at job centre to agree to his claimant commitments but he's not actually been given any by his work coach because of his illnesses. All he's been asked to do is make sure his fit notes are in on time. She was actually really nice his work coach. He gets really upset because he can't do half of what he was able to and she was really good with him.

We knew he'd have the UC50 to fill in and she actually said at the job centre appointment that she'd get it pushed through as quickly as she could for him which she did. We had the form come quite quickly. The lady from the disability charity said not everyone gets asked to go to a WCA regardless of if you've been on ESA or other legacy benefits. I'm kinda hoping he's not got to go to one because he can't deal with the stress of it all but we'll see what happens there.

He's had rheumatoid arthritis since he was 36 - he's now 51. I'd just had our youngest Daughter when he got diagnosed and I was struggling myself after my 3rd c section. Id be up in the night with baby and OH due to the pain he was in. Then I'd got a 2 year old and a 7 year old to look after too. To say it's been a struggle is an understatement. He's only getting worse. He won't ever get any better. He's had major surgery in between and been diagnosed with reynauds, eye problems, spondylosis, he's got a skin condition too - all linked to his rheumatoid.

I did try and go back to work part time but couldn't rely on MIL to look after the kids and do school runs anymore as she lost one of my kids one day while I was at work and OH was in hospital. So I had to stop working.

Bertie1981

Oh and he got his normal PIP payment today too. I know it's paid in arrears but I've heard A LOT of people saying they got the text one day to say review was complete and when they checked their bank the day after when their pip was due, they either had a reduced payment OR no money at all.

Rosie_Scope

Sounds like you've both been through a lot @Bertie1981! Sorry to hear his conditions aren't going to improve, I hope he's at least able to feel comfortable sometimes.

It's good that his work coach seems supportive though, it does make all the difference. There are definitely some confusing aspects to the benefits system sometimes and it can be quite draining to get through it all.

Fingers crossed that the rest of the transition goes through quickly and smoothly and you can both relax a bit!

Bertie1981

Rheumatoid can be controlled if you're on the right meds but it's a lifetime condition. Infact it's not a condition it's a disease as it can affect your eyes, lungs, heart (he's been referred to respiratory consultant before as he had issues with his chest) , regular bloods to monitor liver function etc. He's got it in every joint in his body so can't have individual steroid injections or they'd be there all day. His rheumatoid levels when he got diagnosed were the highest they'd seen in a man his age. They said they'd expect to see that level in a 65 year old.

Rosie_Scope

That must be difficult to deal with at times @Bertie1981. Is he managing to control his symptoms to a manageable level at the moment? I can imagine the stress of benefits doesn't help much either!

Needhelpandadvice

@Bertie1981 To me it sounds like they gave him a paper review because of past medical history.

However, you really need to wait until you get the letter.

I would say that you should expect good news, rather than bad.

So try to stay positive until you get the letter to confirm things.

Scope do not like me saying this, and whether they accept this comment.

When it comes to the DWP if you expect the worse and the best happens, then that is a bonus and a massive weight lifted.

If you expect the worse, and the worse happens, then it sounds like you have enough medical evidence and history to win at a tribunal.

I really, do not think that you have anything to worry about though, as I am going through a PIP review the longer that I do not hear from the DWP the better, as long as I am getting paid, I would sooner have it in 2025 than I would before Christmas.

I have been waiting since April/May and I just do not want to hear anything from them.

Bertie1981

He's tried just about every DMARDs (disease modifying anti rheumatic drugs) available to him and he can only tolerate one to a certain extent. And that's hydroxychlorquine. But he doesn't always get on with that either... In the past he's had sulfasalazine, methotrexate tablets which destroyed his guts so was given the injections instead but that did the same although not as bad. He had to take folic acid tablets with the methotrexate but couldn't tolerate those either. He was on gold injections for a while and his immune system was almost none existent on those. He lost about 3 stone and was constantly tired and Ill. That's what he was on at the time of his ATOS medical. He looked shocking. But according to them he'd be cured lol. He can't take any type of anti inflammatories as they play havoc with his gut too so he's had investigations into that. So it really has been trial and error. They don't like giving him too many steroid injections as that can do something to your immune system I think over time. Infact last time they wouldn't give him one at all but they're literally the only thing that takes the edge off. But they don't last long and a couple of times they've not even worked. So it's hit as miss. He's got huge rheumatic nodules (look a bit like gout), growing on his achilles tendons, in his wrist and ankle joints, on his knee caps, elbows and up his arms. His rotator cuffs in his shoulders are shot too. It's just a matter of living with it now and getting by the best he can. He used to be able to have a good couple of days where he could potter about in the garden and feel kinda OK but now he's really struggling

Bertie1981

https://forum.scope.org.uk/discussion/comment/910446#Comment_910446

I'm really hoping he gets good news. Still not heard anything (no letter yet) so we're just trying to put it to the back of our minds for now. He won't ring them either. I think the main give away will be seeing if I get my carers allowance on Monday.

I can vaguely remember years ago when OH was on DLA, he got it for 2 years and he had to start a new claim rather than have a review and he wasn't successful - my carers just stopped. Now don't quote me because it was years ago but my carers stopped before I even got the letter. I checked my bank and there was no payment. The letter came later that same day or the day after. I'd presumed it was paid in arrears but it's paid in advance if its paid weekly which mine is. I can't remember having to ring carers to let them know about his DLA ending, I'm almost positive it was done automatically. Could be wrong though, I've slept since then.

But it's not nice this waiting for this letter. I'm watching for the post man every day and dreading what's going to be put through the letterbox 😬.

He's never been awarded anything other than standard rates on PIP and the lovely guys who help him with his forms have said they are surprised he hasn't been awarded something higher because he's not ever going to get any better, his eyes are taking a hit now too with various eye conditions. Luckily his perphiperal vision isnt affected just yet so still allowed to drive as long as his glaucoma is well controlled he'll be OK but saying that he can't drive far anyway because his feet are so bad