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Have done my Esa to Uc claim. I had to attend job centre wednesday to prove my id. I had to ask about my claimant commitment as he was not going to do it.He got it up on screen and clicked i agree.He told me i would be reassessed but did not know when. I have LCWRA and in the support group and this carries over.I am now extremely worried as read online this morning that the goverment is on about scrapping the LCWRA and support group element from UC.Presusamly thats why we've all had to change over. I am geninuely not able to work and all this is stressful and its making my health worse. IEven though my ESA goes back as far as 2017/18 and i did not have to get sick notes from my DR ,i did.I still have one that covers me to the present day. Is there anything else i can do to protect and cover myself in the meantime. Is it worth me trying for PIP? .I have ME/CFS and Fibromyalgia.Many Thanks

MODs, please check content is OK, thanks.
Dear Joco, everything BIs says is wise. I had to argue over driving, though my issues are with physical stuff that causes joint pain, not CFS, fibro or ME. I see a possible line I think you could take, something like this:
"While I can manage to drive safely physically, my FND limits the length of time I can concentrate adequately for. Therefore I only ever do very short drives. I need to do these to avoid further extreme joint pain that would be caused by trying to walk or use public transport. I do not drive to unfamiliar places as this would be difficult due to my FND [add more explanation why?] After any journey that I do drive, I am very fatigued and have to rest before for example I could drive home again. " (put that in only if true)

Hope this helps,
Denby

Hi Joco

I'm sorry this has happened. We always advise claimants not to submit reports that could be used against them, but sometimes it's not obvious that it will happen, and this may have happened in your case.

It's entirely possible that the assessor has little knowledge or experience of someone with FND. I was curious and just googled how many people in the UK have FND and the first article was from NICE (The National Institute for Care and Excellence)cks.nice.org.uk/topics/functional-neurol...Bennett%2C%202021%5D. This is a reputable source and if you're putting together a Mandatory Reconsideration -you may find some helpful information. Even though you don't know how much the assessor knows I am sure you will find information in the article that confirms your experience and evidence which will contradict her assumptions. You can say things like the assessor is "mistaken...", "is unaware..." is confused..." , "is Incorrect ..." (Don't be tempted to call the assessor an idiot or anything worse, however accurate or tempting it might be!).

One of the links from that site - goes to a reputable FND site - which you may need to quote from to emphasise that the assessor has "misunderstood" the neurology report and the impact of your symptoms neurosymptoms.org/en/

I'm sorry about your job issues - reiterate that the assessor has "ignored" evidence of your language difficulties.

You can only repeat the issues you have with Fibromyalgia and ME/CFS. It is hard to get through to some of these medical professionals that exhaustion from these conditions is nothing like other people experience when they say they are exhausted after a late night!

Driving is the one issue you need to be careful about arguing. Of course, you are allowed to drive, but be aware we have had a couple of members who have lost their driving licences because they argued hard on their PIP forms about their physical disabilities and the DWP contacted the DVLA saying that if the person was as ill as they said, then they should not be in charge of a vehicle. You won't win by saying you only drive for ten minutes - because everyone has to be strong enough to make emergency stops and manage a vehicle that can kill if it goes into a swerve. Please don't think I am implying you shouldn't drive. I just want you to be aware of the dangers of arguing against what she said. Challenge her ignorance by all means, but when you are putting together your MR, be cautious how you raise this point. Emphasise other things.

I realised I should have asked from the beginning: have you got your PA4 (assessment report), or have you just the decision letter? If you haven't got hold of the report you need to get it ASAP. It normally takes 7 - 10 days to arrive. If you have the PA4 - go through it thoroughly and look at the Guide to PIP Appeals on how to complete your MR and also look at the guide on how to challenge a medical report. It might help

If you have any other questions, do come back and ask. Good luck

BIS

Hello,
I am applying for PIP and ESA. I included my neurology report which shows my diagnosis of FND to support my claim of having cognitive difficulties and sensory problems such as pins and needles and numbness. The assessor has said that the Neurology report stated that findings were normal and there were no cerebellar signs. From what I understand of FND they test to rule out other things, in my case, to rule out MS. There are often no signs of problems with structure of the brain as it is more an issue of processing that causes the cognitive issues. Similarly, the assessor writes that the neurology report states that upper and lower limb power, tone, reflexes and dexterity were within normal limits and no additional referrals have been made. That is because I do not have MS. I don't know how to explain that my Fibromyalgia pain and joint problems are still an issue as is the crippling fatigue from ME/CFS and that he was checking for signs of MS. I can't really ask the neurologist to make his report clearer for PIP purposes! Assessor also says that I am employed in Speech and Language therapy I don't have any problems speaking to people. I have already explained that I am losing my job because I can no longer effectively communicate. Unfortunately, the capability hearing is not until 14th which is after the date I need to send in my Mandatory Reconsideration request.
Assessor also states that because I can drive (albeit only up to 10 mins max and on familiar routes) it indicates that i have 'substantial abilities of concentration, memory, judgement, perception and safety awareness'. Concentration and memory are adversely affected by my FND.
Any advice from anyone please?

Hi there,

I’m doing my UC claim after receiving migration letter (from ESA support group)

My official diagnosis on my medical records is ME/CFS. I will include this in the UC50 form for sure but I’m wondering whether to put my other possible diagnoses as well.

1. i.e. does having all possible diagnoses on UC50 form help if I am assessed with a WCA, or is the info on UC50 form not relevant to WCA?

2. I have spoken to my GP about depression and anxiety so should I put these as well (I’m not sure if these are official diagnoses of medical conditons or not?). Perhaps it can’t hurt to include it though?

3. I don’t think I have an official diagnosis of Generalized Anxiety Disorder, but fit all the criteria and have spoke to GP about these symptoms, so might be able to get this diagnosis relatively easily (I have a supportive GP). Is it worth trying to get this diagnosis from my GP before submiting my UC claim?

4. I have recently had treatment with a private Trauma therapist that says I fulfil the disgnositic criteria for CPTSD but the NICE guidelines are "occasionally, a primary care physician with appropriate training and experience may be able to confirm the diagnosis. However, in most cases, referral to a mental health specialist with expertise in managing post-traumatic stress disorder is required.” I think it will be difficult and stressful to get this official diagnosis if can’t get from GP.
a) Can/should I put diagnosis of CPTSD on UC50 form if not officially diagnosed by NHS therapist and not on my current medical notes? I’m guessing not…
b) how worthwhile would it be for me to pursue getting this official diagnosis - I think it will be quite stressful and hard to get, so only want to do it if it will strengthen my case if I’m assessed with a WCA.

In general I’m wondering if I should prep as much as possible now for a possible WCA by pushing for medical diagnoses and getting my medical records updated to reflect this?

Thanks so much for your help
Chloe

Hi there,

I’m preparing for my UC claim after receiving my migration letter and wondering what to expect initial Job Centre appointment.
1. What are we asked in this interview?
2. I read on your forum that we don’t have to answer questions about our health conditions in this appointment, is that right?
3. And that we also don’t have to answer fishing questions around our spending etc? It would be helpful to know what information we do legally have to give in this appointment vs what we don’t!
4. Do some people only have to do phone interview or does it always have to be face-to-face (at Job Centre or at home interview)?
5. Can they use observations about us in this interview to influence the decision of a WCA, if there is one requested by DWP later?

I’m in ESA support group with a fluctating health conditon (ME/CFS) so attending in person would be hard on some days (but other days it would be possible). I read in your guide we can request an at home appointment. Can we request a phone appointment instead? If so, are there any problems with doing this.

Thanks for your help,
Chloe

Hi David,

sorry for the delay, my CFS/ME has been flaring up.

I email the housing benefits people, thought it might be better in writing as you once mentioned and they got back to me today with this:

Good afternoon



Thank you for your enquiry.



Your Housing Benefit and Council Tax Reduction (HB & CTR) has been in payment based on your entitlement to income related Employment Support Allowance (ESA). In most cases ESA income related and therefore by default HB/CTR can’t be paid when capital levels exceed £16,000.



In cases where the capital source was a payment made due to a DWP error then the capital can be disregarded. On this basis your ESA and HB/CTR have remained in payment.



As you are shortly migrating over to Universal Credit (UC) you will need to declare your capital and also its origin to Universal Credit so that a decision can be made by them regarding your ongoing entitlement. I note that you have also queried this with ESA and they have passed your query over to UC.



Your CTR assessment will need to be amended in line with your UC award when this is finalised, so we will be bound by their decision.



I hope this helps, however if you prefer to speak to an assessor you can call us on the number below.



Kind regards

Hi Kaitlin399,

To answer your question - If someones leaves the house every 7-10 days to a known place for a short time and the affect on them requires recovery time of a few days, and the rest of their time they stay in their room (self-isolate) except for small practical reasons of which they largely rely on others to do for them. Added to that she has never left the house alone and she is 20.
Do I answer It Varies or No for the questions relating to this pattern of behaviour?
She is consistently like this and has been for years. For that reason I think I put No. Am I right?
The WCA descriptors must apply for the majority of the time. So have another read of the guide regarding this and see if that gives clarification.

"I intend to list CFS as a medical condition. Would you agree?"
I would agree as the NHS acknowledges CFS as a medical condition.
www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/

David

Questions relating to UC50 form

1. If someones leaves the house every 7-10 days to a known place for a short time and the affect on them requires recovery time of a few days, and the rest of their time they stay in their room (self-isolate) except for small practical reasons of which they largely rely on others to do for them. Added to that she has never left the house alone and she is 20.
Do I answer It Varies or No for the questions relating to this pattern of behaviour?
She is consistently like this and has been for years. For that reason I think I put No. Am I right?

2. Your Guide gives this advice for CFS which is one of her conditions. It is sometimes not clear how the DWP treat conditions that may have both physical and mental aspects, such as ME/CFS. We suggest that you complete both the physical and mental health sections and, if you are not happy with the decision, then consider requesting a mandatory reconsideration and, if necessary, an appeal.
For an autistic person who also has complex mental health, lives a solitary life and has CFS, she avoids having medical assessments so a formal CFS diagnosis is not documented, but their way of life is documented by professionals and it is recognisable that they have CFS and other conditions. I intend to list CFS as a medical condition. Would you agree?

Good morning,

I was wondering if anyone could clarify the process for going abroad for medical treatment and the maximum time I would be allowed to stay abroad. I currently receive income-related ESA (support group), Housing Benefit, and PIP (higher mobility and standard daily living). I understand that each benefit may have its own rules regarding the maximum time a person can remain abroad under a medical exemption. If so, I assume I would need to adhere to the shortest allowable time across these three benefits.

Could you advise me on who to contact and how to request a medical exemption to stay abroad for longer than four weeks, please?

It is essential that I do not lose any of my legacy benefits, as I am unable to work and have no financial support. (Occupational Therapy and adult social services are expected to assess my needs once my housing situation is resolved.)

Could you also provide guidance on what kinds of medical treatments might qualify for an exemption? For instance, would seeing a physiotherapist twice per week be sufficient? If not, do you have any suggestions about what might qualify? For context, I have complex health issues, including spinal problems and moderate to severe ME/CFS (I am mostly housebound and, on average, 40–60% bedbound).

To explain my situation further: I am currently living in a mould-infested flat with a significant unidentified leak. My landlord needs me to temporarily move out so that he can undertake remedial repairs, which could take approximately three months. However, his insurance does not cover temporary accommodation for me.

I have been trying to find short-term accommodation, but this has proven almost impossible due to both the short-term nature and the much higher monthly costs compared to my Housing Benefit. I am also exploring whether the council can help with temporary relocation, but as another option, I am considering staying with my parents, who live in mainland Europe.

Staying with my parents would allow me to have regular physiotherapy in their home and receive general care. It would also be preferable to staying in an unfamiliar temporary environment without support. For example, I already have a bed in their home that is specifically adapted for my spinal needs—it matches the one I use in my flat here in the UK, as I am unable to sleep on a mattress and need a very firm surface.

My health is deteriorating rapidly due to the poor conditions in my flat and the extreme stress of the situation. Staying with my parents could improve my wellbeing significantly, but I can only consider this if I am able to secure a medical exemption to avoid losing my benefits.

Thank you for your advice and assistance.

Couple I support in very tough circumstances. He used to work, she has max PIP for multiple health conditions inc CFS and pain that requires heavy brain-fogging painkillers. Now he has Stage 4 cancer and finished work some time ago. The effort of doing the best for his health meant it was weeks before she managed to make their UC claim. The UC journal notified success with the note that payment only from the date of claim could be challenged/appealed. Any help as to how to tackle this would be very very welcome.

Just wanted to thank you all and update you, I did appeal to FTT in regards to errors of law, I had a decision back this past Friday saying there were 2 errors of law.

1) Insufficient reasons were given for how X's ability to look after her non-verbal, autistic 7-year-old son is inconsistent with her claimed difficulties to undertake the PIP activities and descriptors (see JM v Secretary of State for Work and Pensions [2024] UKUT 283 (AAC) and
2) Insufficient reasons were given for descriptor 9 given the ruling in Secretary of State for Work and Pensions v MM [2019] UKSC 34.


However they have asked for this to be re-decided by a differently constituted tribunal but for a face to face hearing for 2 hours!!!

So I have now decided to request this to be a paper hearing.

The previous experience has caused me great anxiety and I have recently been diagnosed with Idiopathic Urticaria, where my triggers are stress.

I have recently had a breakdown and I am currently very emotionally unbalanced, there is an increase in my anxiety and panic attacks; a face to face hearing would be virtually impossible for me, the previous hearing was by telephone and i'm struggling participating in those, I had a recent LCW assessment for UC and that triggered my CFS and urticaria, so I know I just can't cope with the stress of handling it and a recent assessment for my mental health which came back as severe depression and severe anxiety and panic symptoms, with a clear need for therapy. I have trialled many different anti depressants including different doses and types and because of my caring role and responsibilities I am very limited to what I can take (something which has now been explained in my submission, which is struggled to put into physical words).

I have had help writing a submission detailing my conditions (co-morbid) how they interact with each other and the effects these have on my dual role as a disabled person and a carer, it refers to the most recent case law in regards to claiming carers allowance and pip - that the claiming of CA doesn't diminish personal needs - tribunals must not make assumptions about ability to manage own needs based on caring abilities and recognises that being a carer can actually increase rather than decrease disability needs LM v SSWP -UA-2023-000634-PIP [2024] my conditions are complex (Fibromyalgia, CFS, SIJD,GTPS) as well as other conditions.

I have now requested for it to be considered on the papers.

I have also received my new PIP application for renewing my pip (My previous the one at tribunal was my first ever PIP claim which is due to end in April) Another stress, i'm having to get help for it all this time around as I just can't cope I have too much going on, its not fair, I feel I have to battle for everything.

I hope the information about Carers Allowance and PIP helps someone else.

Couple I support: wife on max PIP for multiple conditions including CFS, pain requiring regular Tramadol, mh issues, etc. Previously working and caring husband develops drastic life threatening form of cancer.
So due to wife's inability to deal with paperwork on top of now her caring for husband, supporting him at many frequent appointments, managing his multiple medications etc [he is severely dyslexic] despite own fatigue, the UC claim was not submitted for several months after he became unable to work. If the dire circumstances justify requesting a backdating eg to coincide with when he finished work [of course morally they do but we are dealing with the DWP...], what is the best way to present this please? The UC journal award notice does say the backdating date [currently to when the claim was finally submitted] can be challenged. But gives no further details on doing so.
Many thanks for any help.

Hi Wiggles,

To answer the points that you have made.
1. My reasoning for an MR would be: I've only just been made aware through a friend that the category of my condition has changed and this should be reflected in the points that I receive. I don't receive any points in the sensory or cognitive categories.
The PIP assessor does not award points on " categories ". They are awarded for meeting the " descriptors ".
Have a look at the following BenefitsandWork guide....
Support for Clients
With PIP Mandatory
Reconsiderations & Appeals www.benefitsandwork.co.uk/?dlp=6724db5376c0b

2. My reasoning for MR would be: because I've worsened and they're ignoring evidence that's been supplied with each review. I don't receive any points in the cognitive categories.
Again a worsening health condition in itself doesn't generate points. Unfortunately it has to tick the boxes against the descriptors. Have you looked at the following BenefitsandWork guides.............
Claiming PIP
Supplementary Guide
ME and CFS www.benefitsandwork.co.uk/?dlp=6724db5376bc1

Claiming PIP
Supplementary Guide
ADHD www.benefitsandwork.co.uk/?dlp=6724db5376b93

3. My reasoning for MR would be: because I've worsened. Though I can't get any extra points for this category which is physical because I receive the maximum points.
PIP assessments are renown for being inconsistent and it is possible to go down from full points to zero and the other way round. Have a look at the section on Mandatory Reconsiderations in the following BenefitsandWork guide.

David

Thanks David, really appreciate your reply!!

> You will need to supply examples for myself and other members to consider.

Sorry, I thought I was clear.

1)

DWP moved one of my conditions from a “Musculoskeletal Disease” to Neurological disease category this year, BEFORE I was assessed. They should have moved my points to the appropriate category given this change but didn't. I've only recently been made aware of this otherwise I would have requested a MR. I do not know if they acknowledge that I can ME/CFS or not based on the points I currently receive because I have several other conditions.

Here's the data:https://stat-xplore.dwp.gov.uk/webapi/metadata/PIP_Monthly/Disability.html Note: 'The movement in 2024 of Chronic fatigue syndrome (CFS) to the Neurological disease category'

My reasoning for an MR would be: I've only just been made aware through a friend that the category of my condition has changed and this should be reflected in the points that I receive. I don't receive any points in the sensory or cognitive categories.

2)

I've supplied evidence including diagnosis letters from NHS AND personal evidence of 2 OTHER conditions (ADHD & DYSLEXIA) the evidence has been repeatedly ignored. AND, my ADHD has significantly worsened over the past 6 or so months (after submitting my PIP review) due to documented physiological changes.

My reasoning for MR would be: because I've worsened and they're ignoring evidence that's been supplied with each review. I don't receive any points in the cognitive categories.


3)

I also can no longer use one arm, aside from very basic tasks. I can't lift it at all, I can pick up or move things aside from maybe paper or a utensil. This too has worsened over the past 6 or so months which is AFTER my PIP review.

My reasoning for MR would be: because I've worsened. Though I can't get any extra points for this category which is physical because I receive the maximum points.


I hope this is clear now, please let me know if it is/isn't. I'm concerned as I know I'm risking points loss but also I think it's only fair that my full range of disabilities are both ignored and not put into the appropriate categories.

Thank you for your response!

Is there any way to notify DWP of the new condition? I did put that I had pain in my hip on my pip2 form, I just didn’t know it was arthritis, I’ve had the condition for several years and unfortunately will have it longer than 9 months. It’s affecting the ME/CFS symptoms and making my daily living activities and my mobility more difficult.

Thanks for the link to the guide, I’ve tried to read it several times but struggle with it but I’ll try it again!

I have ME/CFS and have various aches and pains, one area is my hip. I was denied PIP and wasn't able to get my MR sent in within the month. I was diagnosed with arthritis in my hip after the time limit to submit my MR. I'm working my way through the MR but want to add this new diagnosis, would I add it to Q18 and would I add all the information for the relevant PIP activities in this section like I would if I was applying for the first time? TIA

HI there everybody! I hope you are all optimal today.
I have a severe long term auto immune condition diagnosed as ME.CFS which has stigma & NHS don't comply with WHO or NICE.
I was on highest rate PIP of both given by a PIP appeals doctor who spent more time with me than the NHS put together.
On review My GP said I was lying about slurred speech and everything I say is brickwalled in spite of signed carer witness
statements and a support letter from a severe ME society listing my symptoms. I have been too ill to appeal so sold my home to pay for carers debts and medical treatments. I find hyperbaric oxygen helps but can no longer afford it and yet again I will have to sell my home (now cupboard size) to pay for carers I've had many years and this treatment especially. I feel ready to appeal now but with brain fog really not fit before. How can the law penalize me from appealing when so much brain fog that I simply couldn't even describe it in short to an advocate who are short of the time I needed. I spend a lot on medical and care B12 injections etc. NHS do nothing.I really need to regain my PIP dropped as accused of lying. How can this be fair and legal? I am at a disadvantage here.PIP blatantly said this in writing. There is no treatment on NHS for ME and I need this benefit restore. Love and Light to all J

Hi Malty

Your doctor has told you that you have chronic fatigue., and that is all you need to put on the PiP form. You just tell them that you are awaiting specialist help. Please go through our guide and look at the examples of how to answer each question. Do not assume the person reading your form will know anything about chronic fatigue. You will have to tell them. So if you're saying that you can't cook because of exhaustion - you need to explain how difficult it is to even keep your body upright at times - which means that you would have safety issues etc, etc

(Ps Many doctors don't have a real understanding of the impact of conditions such as CFS)

Once you start answering the questions if you have any queries - come back and ask and we will try to help

BIS

Hi Gary,

I recently attended my WCA with Maximus.

Apart from additional info. needed for 2 issues (CFS/ME and mobility) I was told that the details I had submitted for the review was completely satisfactory. For the first time I left an assessment with a positive outlook. If there is any trouble it'll very likely be down to the DWP, as I don't think they'll be given an easy way to deny my current health status from the WCA, as has happened in the past.

I should be moved from LCW to LCWRA for mobility due to being less than 50m of movement. (Funnily enough when looking through my PIP appeal decision from years ago., I was awarded 10 points for 20m to not more than 40m descriptor for mobility then and things have not got better.)

I'll update or start a new topic when I receive the decision.

Larry1234