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Hi Alison

Using the filling of the ESA50 is a good example - because you have said that it has massively disrupted your routine. Can you think of any other times when your routine has been disrupted. You don't have to use a single example, you could mention several things - eg sudden hospital appointment, an appointment that takes longer than you're expecting, expecting to go to a particular building and finding that it has changed, a journey being changed, post not arriving, unexpected phone calls. forgetting to buy something for a meal, internet access being cut, sudden unexpected attack of exhaustion, unexpected pain attack, unexpected balance issues leaving you feeling unsafe etc etc.

You don't have to use any examples I have given - these just popped out of my head. You know what's important about your routine and you know how it leaves you feeling mentally and physically if you're thrown off. Don't worry about trying to get the perfect answer. It is always challenging to get someone else to understand and you can only give it your best shot. Our experiences are unique and all you can do is describe in your own words why change is difficult for you. You can even say what you have here, which, due to your CFS and anxiety, your brain feels scrambled, and it is hard to describe just how exhausting, painful and scary it is to manage change and deal with the impact of change on you both mentally and physically.

BIS

Hi

I am struggling with this question a bit on the ESA 50.

I have CFS and anxiety and get really overwhelmed by change. I've described this but am finding it difficult to come up with concrete example. I've used the example of filling in the ESA 50 and how it's massively disrupted my routine. Has any one got any other insights? I know there are loads but my brain is so scrambled, I'm struggling to come up with any.

Thanks

Alison

Thank you so so much . Yes I do get lower rate for depression and other issues . But not for mobility.
I remember way back when I had my phone call they ladies words were “but you can walk can’t you” yes I can I told her , but with pain and after a certain point I can no longer walk a step without help .
But when the CFS happens which sometimes can be every day or it maybe just a few days .. but it’s also the knock on effect as you know as soon as you start walking (even just around the house ) it can be extremely painful .. it seems to be getting me down a lot more . And prevents me from doing a lot of things that is like to do ..

I will defiantly print off about it and include it in my next renewal .
At the moment I am under pain clinic for my other pains .
Trying to explain to them that there is nothing I can do when I have CFS apart from rise with it is pretty hard . Like you not many people have heard of it . They just assume it’s normal cramp . I always get told “ drink more water “ but it’s not to do with water 🙂

Thank you yet again and thank you for taking the time to read up about it 🙂

Hi, any advice please on appealing the decison for a higher award? I've been awarded PIP first try (surprisingly) for ME/cfs and have been given 8 points in both categories, giving me both standard rates. They seem to have awarded me some points for things I think would have been easier to say I don't need help with and have given me no points on multiple ones that I really should get points for. I feel if it was done correctly I would definitely have a higher award. There is also multiple comments in the decision letter that are completely incorrect. But firstly is it risky to fight this and maybe end up with nothing? (I have read on here and elsewhere that it can mean that if you ask them to look at it again) And secondly there's no way I could complete a decent letter to ask for a reconsideration with all the points that I need to make that they have wrong within the couple of weeks deadline I have, so it would have be done late within the 13 months and reason given I am not well enough to do that quickly. Or is there a way to contact them and say I want it on record this is wrong but for now I am accepting it as not well enough to go through the process at the moment? So then it is at least noted now it is incorrect and maybe I can raise it again down the line. Also when you ask for a reconsideration do you have to have another assessment, how does it work? What are the chances you then get nothing at all? Many thanks for any advice.

Hi everyone!

This is my first post.

I’m claiming Universal Credit, with LCWRA due to ME/CFS diagnosis. I understand this gives me a ‘Work Allowance’ of £673 per month.

I also work part-time as self-employed. I earn £339 per month for this work.

I have an Income Protection Insurance (sickness) policy on which I can claim up to £204 per month if I choose to.

If I claimed on the IP Insurance, this would take my total monthly income to £543, which is less than the Work Allowance.

If I claim on the insurance policy, would this be counted as being supplemental income within the limit of the Work Allowance? Or would I be 'penalised' with a reduction in my UC payment?

Many thanks.

Hi everyone,

I don't think the last post I wrote worked so here goes again.

I have a PIP review telephone assessment for change in circumstances next week.

My conditions have worsened and brought with them depression and social panic disorders.

I am terrified that PIP will take my license away from me.

I need some advise because hospital have advised that I can drive but not when certain conditions are flared. I adhere to this advise strongly as I want to be safe and keep those around me safe. Currently I have not driven for 4-5 months and prior to that I would only do short journeys with somebody with me in case I needed assistance (CFS and pain from various medical conditions). I also have an eye condition which when flared affects my vision but when not flared does not impact driving.


How can I communicate to PIP that I know when I can drive and when I cant without either them marking me down in other categories or taking my license away from me.

My situation is I currently struggle to leave the house.

I am worried sick.

Please help

Hello All

I’m on Contribitions Based ESA & in the Support Group since 2021. I never had any assessment & am sure that I will need to be reviewed at some stage. My claim was for CFS/ME, Fibromyalgia, Anxiety & Depression (15 yr duration) & was my first.

My circumstances have changed however.

I am now in need of Income Related ESA & have also changed address to a new local authority.

I will not be claiming Housing Benefit as I own my home (purchased previously).

I have also been diagnosed with stage 3 cancer (May 23).

How do I proceed? I need to inform the DWP of my health & address changes.

I’m unsure how to apply for income related ESA.

Do I ask for this to be added to my existing contribution based claim?
How does my change to a different local authority impact that?

Will I have to make a new claim altogether?

Will I be told to apply for UC instead?

What about managed migration & doing this voluntarily (loss of protections) naturally (?) & or before a date I’ve read (can’t remember what date) in April this year - when amounts are increasing??

Or do I ask for a supersession??!

(Am in the process of applying for PIP which will have my new address & will be to the appropriate LA. Which I know is irrelevant to my ESA claim.)

I was given no date until which my ESA would be reviewed. And in terms of migration I signed something that I believe is a precursor so may now be on New Style ESA / I think!

Any advice gratefully received. Overwhelmed, anxious & confused

Lorraine

Hi CFSPOTSADHD

If your report is complete they are unlikely to look at any evidence you send in now as you missed the deadline, unless you had a prior agreement to send it in late. You can try contacting the DWP and see what they advise.

BIS

Hi littleroo,
Thank you for sharing your story. Stories like yours do indeed inspire hope and continuation.
Thank you.
LL26

I thought I’d share my journey in the hope that it gives others the strength to persevere with this heartless and soul destroying process. Today I learnt that my award remains unchanged and I won’t be reviewed until 2034

I have been ill since 1998 and have had the delight of being assessed under incapacity benefit, transition to ESA (where they just didn’t want anyone in the support group so contribution based payments stopped after a year), disability living allowance, transition to PIP and two reviews. My condition has not changed for over 20 years. During that time I have had one tribunal and two mandatory reconsiderations. Unsurprisingly the process has had a hugely negative effect on my health. My review this time was paper based (a huge relief in itself).

I’m feeling very overwhelmed and emotional knowing that I don’t have to have yet another assessment. I’ve spent so many years with this worry hanging over me. I’ll be 71 at my next review unless they find a treatment/cure in the meantime.

Stay strong and be kind to yourself - don’t let the buggers get you down.

n

In that case, I strongly recommend that you review the guide I mentioned in my previous post.

Gordon

no i only just joined

n

To answer your specific question, yes they can use whatever information they think is relevant to your claim, you can challenge whether this is reasonable in your appeal submission.

As to your qualifying for PIP, it is not the condition that is being assessed but the limitations that result from them in regard to a set of legally defined activities.

Did you use our PIP Claim guide when making any of your claims, see the Guides link at the top of the page.

Gordon

Hi,
I have been on ESA for several years (with grateful thanks to B&W for help with this application)
I am about to start a PIP application. I have downloaded the Guides, and also the samples of PIP1 and PIP2 forms.
Questions:
On page 18 of the PIP1 form, there is a box to enter "Anything else you think we might need to know".
I'm not sure if this should be completed with some information? My conditions maybe?
I have CFS and Fibromylagia, amongst other problems.
The exhaustion and Fibro fog does mean I will take a substantial length of time to complete the forms (hence I prep before I even make the application).
Should I tell them about my conditions in this section? I would also prefer the paper version of PIP2 posted to me.

Many thanks for your input.

had two crainiotamys for brain anyeurysms in 2014 then diagnosed with cfs 2014 applied for pip and turned down and applied again july 2023 turned down again 0 points mandatory didnt change decision so have to do appeal, my assessment report lists evidence considered in formulating advice as pip report 2015, consultant report 2015 benefit service letter 2016 and claimants letters 2015 2016 and pip questionaire 2023 can they use info from that far .back.

Hi sgbd

What wonderful news. Many congratulations to you both. I'm so glad that you found the guides so useful. Give yourselves a huge pat on the back for a job well done. Enjoy it.

BIS

Tags @RESULT @PIP @REVIEW

In March of 2023, I sent off my husband's PIP review. Following a telephone assessment with Capita (January 2024), he got his decision today! An ongoing (10 year) award with enhanced daily living and enhanced mobility! He also received a backpayment (which was surprising) for money owed from the start of his review last year (he was previously on standard daily living and enhanced mobility). I cannot thank Benefits and Work enough. We were absolutely terrified about this- especially because he can drive short distances. The PIP guidance here REALLY helped us to advocate for him- to know when to say "Yes, he can do this, but only slowly, or with pain." And we had the added comfort of knowing that there was advice available to us here if we had to go through a mandatory reconsideration or tribunal. I cannot express how truly relieved we both are, and how much the advice here and from the moderators has helped us. Thank you all again, so much.

As I live with ME/CFS and Anxiety, the thought of possibly having to do a video assessment where I am required to be on display, sat upright in a well-lit room for over an hour really worried me. I couldn't find any DWP or HCP advice on whether I would be allowed to disable my camera or be in a darkened room without this affecting the assessment.

However, I have today received a response from the DWP to a FOI request (www.whatdotheyknow.com/request/use_of_ca...vid#incoming-2547276) and they have confirmed the following:

"Claimants joining a video assessment have the option to disable their camera at any point
during the assessment, and they would then be informed that the assessment will continue
as a telephone assessment."

Obviously, in the first instance, you should request the Assessment Provider (Capita/IAS) to change the assessment type from Video to Telephone. For the most part, they will agree to this. However, if they do refuse for some reason, this response confirms you would be within your rights to disable or cover your camera.

Hello,
In a nutshell. I have ASD/ADHD, fibromyalgia, chronic migraines, CFS, osteoarthritis, anxiety and persistent depressive disorder among other things. I applied for PIP March 2022. Even using your site I scored no points. I asked for mandatory reconsideration and because it was late in, they shut my case down. They reopened it because my ASD. I scored 11 points Daily living. 10 points for planning a journey and 4 points for moving around.

My big issue is they have not taken my ASD or ADHD needs and communicative deficits into consideration. If I score myself I should get well over 20 points in daily living. I cant cook for example but they say I can. One of the biggest problem I have is place blindness, I get lost everywhere I go. I have been living in my present home for over twenty years and still can't find my way around town.

They rang me today and said they would give me an extra point for a ladies problem which brings me up to 12.

So I'm enhanced on both. Because of this she said she will now shut my case down from the tribunal.

I am entitled to so many more points and don't know what to do.

They also said I would be reviewed in 2027. I told her I was going to still going to go to tribunal because I'm not happy with a review in 2027. She said she would give me five years.

I don't know what to do. This short paragraph doesn't show how sick I have been over my lifespan and how suicidal I am every day of my life because of high traited undiagnosed ASD/ADHD, the years of sick leave and difficulties I have in many areas of my life. Maybe this sounds crazy but I want to go to tribunal to get all of the issues I have because of my neurodiversity recognised.

She told me that now I am getting enhanced on both rates, the tribunal will reject my application for a hearing.

Is this true?

Very kindest regards from an very distressed autistic

As a carer you will be in the UC No Work Related Activity Group. ( see Citizens Advice link below )This is important as it means you won't be asked to attend the Gateway Interview at the Jobcentre with a Work Coach { who questions you regarding what they call " gainful self employment "}. It also means you won't be affected by the Minimum Income Floor. So all you will have to do is report your profit to UC once a month. It is you not the work coach who works out the profit. There is a leaflet in the Jobcentre called a UCFS5a which explains how to calculate profit under the UC rules. Here is a link to a copy. Hope this helps !
www.housingsystems.co.uk/Portals/0/Docum...017-08-27-075642-640
www.citizensadvice.org.uk/benefits/unive...mmitment-what-group/