Worsening of circumstances - Afraid to inform PIPs, Advice please

Big_Bill_Adama

Hi all,

I was wondering if you could share some advice regarding informing pips of worsening of circumstances.

I am a 32 year old male, I have severe Psoriatic Arthritis. I currently receive standard rate daily living (9 points) and standard rate mobility (10 points).

I was recently diagnosed with ADHD (Combined type). This wasn't exactly news to me, but I just thought I was quirky (and lazy).

My pips will run until November 2025, with my review on or after November 2024.

Recently my mental health has declined further, racing thoughts, depression, anxiety etc. All to do with my ADHD apparently. 

During my PIPs interview, I focused mainly on my arthritis, glossing over my social difficulties as anxiety and depression. I have found coping mechanisms through my life by making rigorous daily schedules such as work etc. I find it very hard to break from routine.

My wife is a god send, and if she wasn't there to tell me what I need to do each day that isn't absolutely essential, such as caring for my daughter and working, I wouldn't leave the house. I hyperfocus on things and can't move for hours, or I can't sit still.

I forget to eat, I would stick a top with a stain on it again no problem, If you sent me to the shop to get three items, I would wander around for 15 minutes trying to remember the last item if it wasn't written down. In conversation, I tend to blurt out stupid things and then can't stop talking to try and correct it. If I get something in my head I think I should say, I have to either completely focus on remembering it (missing the conversation) or say it immediately before I forget it.

As I said, for my entire adult life, career and three degrees, I just thought I was lazy and forgetful. Now that this has come to light, I really feel that it should have been a part of my original claim. What my wife and I are now debating, is whether to ask for an early review in light of my diagnosis and risk losing what we get now.

I phoned PIPs and told them about my diagnosis which they recorded, but they were extremely unhelpful about the process and couldn't wait to get off the phone. They basically said, "It'll be a fresh review, you could lose or gain". Which of course I already knew, they gave nothing away.

Can anyone please share their experiences or give their opinion on what we should do? I am also worried things will be going back to face to face assessments, which would give me terrible anxiety.

Sorry for long post, and thank you in Advance.

poppy123456

When you ring any DWP call centre, they are not benefits advisors so wouldn't be able to give you any specific advice on whether it's possible to score more points needed for a higher award.

A worsening of condition or new diagnosis doesn't automatically you to more points needed for a higher award. It's impossible for anyone here to tell you whether you could score more points because we don't know anything about your health conditions and how they affect you.

You can have a read of this link which may give you a better understanding of the descriptors and what they mean. Or you can get some expert advice from an agency near you. https://www.gov.uk/government/publications/personal-independence-payment-assessment-guide-for-assessment-providers/pip-assessment-guide-part-2-the-assessment-criteria

Assessments are mostly by phone, some arfe face to face or video.

Big_Bill_Adama

Thanks for your comment Poppy123456.

I’m not worried about getting more points, I’m certain that I meet more of the descriptors.

My main concern is whether I should leave things as they are, or take the risk and ask for a reassessment. 

I’d really appreciate if anyone who had experience of asking for a review or knowledge of doing this could share their experience/advice.

poppy123456

Big_Bill_Adama said:

My main concern is whether I should leave things as they are, or take the risk and ask for a reassessment. 

As i advised, it will be impossible for anyone to advise you whether you should report changes or not. That has to be your decision. We've had members that have done this that have either lost their award completely, remained the same, reduced and increased awards.

When you report changes you will be sent the PIP2 form to fill in and return. Another assessment is most likely because most people have them. There maybe a considerable wait with the decision because they have continued to concentrate on new claims for the past couple of years.

Hannah_Alumni

@Big_Bill_Adama

Welcome to the community!  

I have seen a few members of the community in the same predicament. I would suggest maybe taking a note of the worsening of the circumstances, so you have a log. It will be great to keep if you then decide to go through the review process.

Dubz

I know exactly how you feel Big Bill. 

I have had such a nightmare getting my husband and I the PIP we are eligible for, you are scared to touch it !  I’m sure my husband isn’t getting enough (he’s totally immobile) and when I had my review, mine was stopped, even though I had informed them before my review, of my new issues! So I’m going through an appeal at the moment. 

It is totally up to you, as others have said, but seeing as you are getting both mobility and every day living already, I personally would wait until your review. Then you won’t have the stress until then. You can explain that you informed them by telephone, that you were scared you would lose it completely, you weren’t well enough, etc, to tell them before, but remember dates that you were diagnosed etc and keep any evidence of that to send them, when you have the review. 

In my experience, mental health isn’t taken that seriously, even though I was asked a lot of questions in connection to it.  In the questions that you get points for, it doesn’t cover so many things, it’s all a bit of a farce in my eyes! 

If they do decide to give you more money, they will probably backdate it, for so long at least (note down the day you rung them) and the conversation you had. 

As for assessments, I had a phone assessment last year, and with my appeal hearing, I’ve explained I cannot attend due to my anxiety and other issues, and I haven’t been informed that the hearing will be done over the phone. It will just go ahead without me.  So this is always an option for you, if you feel it’s too much to attend when and if needed.

Good luck, and hope this helps a little. 

poppy123456

Dubz said:

with my appeal hearing, I’ve explained I cannot attend due to my anxiety and other issues, and I haven’t been informed that the hearing will be done over the phone. It will just go ahead without me.

You can request either a telephone or video hearing, you just need to contact HMCTS. If you don't request it they may assume you're asking for a paper based hearing. Paper based hearings have a very low success rate of between 5-8%.

If you either have a telephone/video hearing or appear in person the success rate jumps to about 70%. For this reason it's never a great idea to have a paper based hearing.

Big_Bill_Adama

Hi Dubz,

thanks for sharing your experience. Sorry you’ve had to go through all that! It must have been very stressful.

I’m still 50/50 at the moment. I asked for the change of circumstances from which I have received and they have told me I can cancel it if I want to. Going to phone CAB on Monday and make my mind up then.

I’ve looked at the statistics and I could be wrong but it seems you have a greater chance of getting your award increased from a change of circumstances (45%) as opposed to a planned review (18%).

Can I ask, was yours a planned review?

thanks again for your advice

Dubz

Hello Bill 

It is a difficult decision to make. I have actually changed my mind on your case! After thinking about it, the fact that your review isn’t until the end of next year, I think it’s worth telling them now. If you stay consistent in what you’ve already told them, adding your new diagnosis, I have higher hopes for you. 

I didn’t receive a form for change of circumstances (I don’t think). I wrote them a letter explaining my new issues (which they did receive) and it was a few months later that I received the review form, which I’m guessing was the planned review (sorry not sure) unless they sent me the form because of my letter. I think my review was due though….

So in your case, your review is not due, so you could lose quite a bit of money you are entitled to. Because it’s doubtful they would backdate it as far back as your diagnosis, as they will say you didn’t inform them. (Not sure if the phone call will count, probably not). 

Going by the timescale here (review not due for a long time) then I would fill the form in. Because the other thing is, it takes so long…. I filled out my review form in November 2021. Only informed they were taking it away beginning of this year.  If you fill it in and send it off, you can relax for a while, knowing that you have done all that you can possibly do, without regret. 

Let’s face it, if they do take it away from you, it’s their error, and you can appeal (which I found quite simple to do, you can submit it on line).

In my humble opinion, it’s unlikely they will stop yours with your arthritis. My issues are not so clear cut (they are to me, but obviously not to them). 

I’ve probably confused you even more now, but I think, with your case, it’s worth taking the risk.  Happy days!!  We don’t need all this do we!!  

Dubz

Poppy, the last time I appealed, and I told them I couldn’t attend, they told me there would be a telephone hearing.  This time, I have explained why I cannot attend and they have not offered me a telephone hearing (up to now anyway) I am able to request one, giving reasons why I want one, but this gave me the impression, rightly or wrongly, that they were trying to avoid having to do telephone hearings. So I will see what transpires. I have written a long letter to them in support of my appeal. If I lose, I lose, I’m not prepared to let them get to me anymore. It’s quite obvious that most people claiming PIP are going to have difficulties attending a hearing. 

poppy123456

Dubz said:

Poppy, the last time I appealed, and I told them I couldn’t attend, they told me there would be a telephone hearing.  This time, I have explained why I cannot attend and they have not offered me a telephone hearing (up to now anyway) I am able to request one,

The majority of hearings are now by telephone or video. You shouldn't assume that they are avoiding any of those because they will always prefer you to appear in person, whether that's phone, video or face to face in person.

You can request a telephone hearing by contacting HMCTS.

Dubz said:

It’s quite obvious that most people claiming PIP are going to have difficulties attending a hearing. 

I don't think it's quite obvious at all. The majority of people do attend, whether that's telephone, video or in person.

poppy123456

Big_Bill_Adama said:

I’m still 50/50 at the moment. I asked for the change of circumstances from which I have received and they have told me I can cancel it if I want to.

Once you report changes i'm not aware of you being able to cancel that.

Dubz

Poppy, as I said, they haven’t asked me to have a telephone hearing, if they do, then I will of course take the call. They have said if I want one (which I don’t) then I have to explain my reasons why. Well, I don’t have any reasons why I would want a telephone hearing. If it’s required, they will tell me. I have provided plenty of evidence and I’m now waiting to hear from them. That is what I have decided to do. With respect, I’m not keen on your tone, and I didn’t ask for your advice. 

Dubz

I would also like to add, that anyone claiming PIP have got mobility issues and/or daily living needs, so of course it’s going to be difficult for them to attend a hearing. 

I agree, it goes in their favour if they do, but isn’t this ironic?  They asked me how I manage to feed my cat, yet they expect me to travel to a hearing. My anxiety would be through the roof, and if that means losing money, so be it. It is what it is. 

poppy123456

Dubz said:

I’m not keen on your tone, and I didn’t ask for your advice. 

My tone? I wasn't aware of there being any tone to text speak. I haven't used any sort of tone to you  and i'm sorry you thought differently.

I know you didn't ask for advice but you did say you weren't able to attend in person. Due the extremely low success rates of paper based hearings i thought i was being nice in pointing this out to you. It seems like i was wrong to spend time trying to help you so i will just move on and not reply to you any further.

Adrian_Scope

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