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Hello!

I found the website after sending in my PIP2 and having a telephone assessment and am thinking about submitting a MR as I was denied PIP. I’m slowly making my way through the training which so far has been very helpful but have some questions relating to an appeal.

How much new evidence am I able to include in the MR as I’ve discovered from the training that I should have put in my original claim and the health assessment that I use aids (I didn’t realise that by using a radiator to stand up I was using an aid!) more than I realise? Will the person reviewing my appeal take these seriously or are they likely to think I’m just adding new evidence to get PIP as there’s quite a bit of new evidence and there are also errors in the assessor’s report. Also, as I didn’t know the process for the assessment I wrongly assumed that the assessor would either give me more time to answer or ask further questions about my answers so there’s a lot of information missing from her report.

For example, for planning and following a journey I was asked “where I go when I drive” but nothing specifically about planning or following journeys. 95% of my journeys are familiar, unfamiliar journeys are difficult and I usually have someone with me to help me navigate but the report says that I can plan and follow journeys unaided.

I didn’t ask for the assessment to be recorded as I forgot to ask as I didn’t put it in my calendar as I have brain fog so often forget to do things but I have received a copy of the assessor’s report which definitely has some errors. Is this something that I should be worried about?

I also haven’t seen a doctor for a couple of years as they weren’t listening to me that problems I was experiencing were related to my ME/CFS and I was also told when I started my claim that I didn’t need to ask my doctor for evidence as the DWP would do that. I’ve since asked for an appointment with a doctor so that I can make sure that all my symptoms are recorded but was wondering if I should ask for a statement from them to include in a MR or would it be ignored as I didn’t include it with the original claim?

Sorry for the long and rambling post!

Thanks in advance!

Hi Nellie
I was diagnosed with ME in 1989, and have sent the diagnosis letter in with all my reviews, the last PIP review was in 2018 and I got enhanced for both mobility and care until 2028. Hope this helps.
Cheers, Pen.

Great news neelie!

Regards, Chris.

@PIP @RESULT

I got nil points for cfs same again in mandatory so I appealed, pip rang me yesterday within a month of my appeal being logged, awarding me standard daily living and enhanced mobility … I appealed with one reason but intended on preparing more evidence but didn’t need to

I appealed and pip had until 4th may to respond, they rang me yesterday to award me standard daily living enhanced mobility backdating to July last year…

Late to the conversation by several months! – but the 2021 NICE guideline on diagnosis and management uses the term ME/CFS, and some in the community have taken to using it when speaking to medical professionals or making benefits claims. Since we don't yet know much about the underlying pathology of ME there isn't an accurate name, and for the time being ME/CFS seems to be the least worst option. As the use by NICE and the NHS gives it a degree of acceptance and credibility, it'd be good of B&W could use it too.

www.nice.org.uk/guidance/ng206

Congratulations to Lavender on completing the review successfully. Seven months after submitting it I'm still awaiting the outcome of mine, but I'm desperately hoping it's as straightforward!

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.