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Hi Danielak.ewa

I'm sorry you find yourself in this position. I can't tell you what you should do here, because you have to make that decision yourself. Your mental health has to be a priority.

If you stick with having a paper-based decision - you don't have such a good chance of winning - because there is no opportunity for them to hear from you other than what is written. Most tribunals these days are not being done face to face but on video. I don't know whether that would make it any easier for you - because obviously, three people are still present. You could always contact your local Tribunal Service and find out.

If you can't face an oral tribunal - don't give yourself a hard time over it. Plenty of people go down the route of a paper-based decision. If you're staying with that - you want to ensure you have presented the best possible case you can. The people on the Tribunal should have a better understanding of CFS/ME and severe anxiety. I hope that you have been able to go through every sentence of what they have said about you, and refute it with your own evidence. The DWP is supposed to show how your health has improved if you have moved from enhanced to standard and you need to show why they are mistaken. You certainly need to highlight that they did the review form without you being able to give your side of the story. We have heard this happening to other people. (Don't worry that you will suddenly lose your LCWRA - you won't)

I know you say you have submitted lots of evidence - but one of the problems that people sometimes make is they don't link the evidence they have to the PIP criteria. They just hope that the DWP will accept they have lots of evidence and are very unwell. I'm not saying that you did this - but just ensure that whatever evidence you have from your professional experts it's obvious where it applies.

Good luck with whatever you decide.

BIS

Hi,
I have had my PIP review.. award changed from both components enhanced to only standard for everyday living.. I am devastated as nothing has changed in terms of my health since my last award and I am barely living, mostly bed bound, needing everyday support from my parents. Very rarely leave the house and it’s mostly to see yet another doctor. I also have LCWRA and now I am scared they will change this because if you look at my PiP decision it looks like I am almost in great health.
PIP review was done without a “How your disability affects you?” Form so I never had a chance to explain my struggles. And it is extremely important because I have CFS/ME which is not very well understood, plus severe anxiety. I am under care of multiple doctors, therapists etc.
I sent DWP so much evidence for MR but they just ignored all of that and stuck to their decision which was based solely on the Assessment and UC health report (which I challenged because it was a load of BS and then won LCWRA).
Now I applied for an appeal, and due to my extreme social anxiety I did not tick that I want to attend the hearing in person… the assessment sucked the will to live out of me and I had a full blown panic attack there with hyperventilating etc. (which of course was only mentioned in the report as “being a bit emotional”). So I cannot imagine not one but THREE people sitting there judging me and me trying to prove that I am not lying or making it up. Was that a huge mistake? Now reading what DWP responded is making me so upset as it just does not make any sense and does not reflect reality at all. So I’m thinking maybe i should go and at least try to explain this, and hope I will not end up in the same state I was at the assessment? I don’t know, I just feel so defeated because of all of this, i don’t think there is any fight left in me anymore.
But is it even possible to change it from paper hearing to hearing in person at this point?
Thanks

I was due to have a telephone PIP review yesterday after my previous appointment was cancelled literally at the last minute. I can’t tell you all the stress this has caused me and worsening of my condition plus additional ones now like IBS and reflux have flared up. So the telephone call came through and the line kept going silent. She tried ringing on my husbands mobile which is on a different network to mine and the same thing happened then our landline and exactly the same thing happened again. At each point we would try to resume the assessment and I was getting more and more stressed and anxious as I just wanted it over with, When the landline had the same fault the health care professional said she would consider reporting it if she went off and tried another number of another person and then get back to me. She came back to me and said that she was able to make this other phone call with no problems so it must be at our end ! Seriously on three different phones including a landline! Eventually I gave up and rang the centre to rebook, by the point I was in tears they said they had no appointments available and I would have to wait for it to go back into the system and get a text. As my husband is a paramedic and I wanted him to support me for the call I had to rearrange the very first appointment I had as he was unable to get the time off. So I’m worried now that they will just allocate an appointment which I will not be able to change because you’re only allowed to rearrange an appointment once according to IAS and then you get penalised. Can anyone advise me please ? I’ve made a complaint via telephone and my husband recorded all the calls. What makes this all worse is I had to go to a tribunal five years ago when I changed over to PIP from DLA and lost my car which is our only vehicle. The whole process took 18 months and I was nearly suicidal by the end of it. I just don’t know if I can face it again. I have M.E./CFS so severely I am housebound most of the time and all of this is so draining on my very limited energy

Thank you for this post, it’s really helpful and timely for me as just today I had a text to say I have my telephone interview in the first week of October.

I submitted my paperwork in October last year, so it will be a year by the time of the interviews I was hoping that they might also do a paper review for me - as I’m similar to your wife (I also have ME/CFS), and have just got a lot worse since the first time.

I did fhe same and put a lot of information and detail in the form explaining exactly the impacts of the symptoms etc.

I hope they make a quick decision after the interview, and that it’s positive - your post gives me hope of that.

First of all many thanks to all at B&W for their advice and support over the years. My 63-year-old wife has suffered several health issues, the main one being from CFS since around 2006. Since that time she has undergone three face-to-face reviews, each time getting more points as her health deteriorated over the years and also because we followed the advice provided on this site.

Her latest award should have expired last November so in October 2022, we completed her review application. She in the meantime received an extension of her award to 26th August 2023. Whilst DWP acknowledged receipt and kept in touch with the "we're still looking into your claim" text messages, she eventually received in August 2023 notification that her papers had been passed to IAS.

Unknown to us, at the beginning of August, she had her award extended to August 2024 to facilitate her review taking place. We only found out when we contacted the PIP helpline to ascertain what was happening with her award and extension.

On 5th September we received a text from DWP telling us they had received the report from IAS and would be in touch within 6 weeks. Initially, we were confused as she hadn't had an assessment and we were at least expecting a telephone assessment. So, presuming that she'd had a paper review, I contacted the PIP Helpline and asked for a copy of the PA3 assessor's report and received it within a week. It looked promising. The assessor was a physiotherapist who used my wife's AR1 and the previous PA4 assessment report from 2019 to carry out the current assessment.

We had followed the B&W advice and rather than merely stating, "No Change" on the review form, we went into great detail once again as to how her illnesses affected each of the Activities assessed. This I think proved vital in allowing the assessor to form their opinion, as it tied in with the 2019 assessment report.

The assessor also formed the opinion that the next review could be done in 5 years' time and that it was likely that at that time, my wife's conditions would still be present and that she would still need my support.

DWP let us know that on 14th September, they had made their decision and we would be notified in the next two weeks by post of what the decision was.

The notification came through on 18th September. She was to continue getting both enhanced Daily living and Mobility and the biggest surprise was that it was for an ongoing period, not the 5 years put forward by the assessor.

I have to say, that despite previously having negative experiences with the assessments and subsequent reports, this review seemed a lot more fair and our three contacts with the PIP Helpline were courteous, friendly and helpful.

In a nutshell, it took almost 12 months from submitting the review to receiving a decision. This was in the Yorkshire area.

My advice to all applicants, carers and supporters is to follow the advice of the B&W team, use their guidance documents and regardless of how hard, upsetting or difficult it is, make sure that you provide as much information and supporting evidence as to how your illness etc, affects you in the various Activities being assessed. Don't forget to explain the pain, difficulties and consequences you may go through trying to undertake any of the activities. If you end up with a personal rather than paper review, stick to your facts and your AR1.

Once again, thanks so much to the team, you have been a godsend and a lifesaver, and good luck to other applicants.

My husband who suffers from severe mental health issues, as the result of the long term effects of a TBI (age 17 - now 56), Chronic Fatigue Syndrome (this diagnosis triggered the change in circumstances, leading to move from PIP to ADP) and Autism (only recently diagnosed). He currently has enhanced rate Daily Living and standard rate Mobility (10points). The CFS means that he's bed bound for most of the week. Are there any guides or articles here on the Benefits and Work website that you can direct me to, to help me complete the change in circumstance form to ensure I'm phrasing the difficulties he has in a way that is recognised by social security scotland to improve his chances of recieving enhanced rate mobility. To be honest I think he should have been getting enhance mobility already, but I'm hopeful that the confirmed diagnosis of CFS and Autism will be sufficient to back up my description of the difficulties he has in resepect to planning and following journeys and moving around but I'm aware that as this is a form there will be particular phrases that they are looking for. Many thanks Lynda

Z

I really hate the term "brain fog" I know it is used by the professionals when talking about ME/CFS and similar conditions but in my opinion it undermines the seriousness of the problem, I much prefer "cognitive dysfunction".

That said, it is surprisingly difficult to score for planning a journey without a clear diagnosis of some sort of cognitive disability.

Do you think that the 20m-50m is reasonable?

Gordon

Hi, thank you for your reply.
I received 8 points for between 20 & 50m
In my initial video assessment it was noted that I said I would have difficulty planning or following a journey. Due to brain fog & cognitive problems with ME/CFS this is certainly the case.
My Citalopram certainly helps with anxiety & panic attacks but should I need to plan & follow a journey without help this would definitely exacerbate the situation.

Yes - weekly
do you think the following will be sufficient? Any advice greatly received- also do you advise highlighting relevant bits in hospital letters or is that distracting?

Due to multiple Gynaecology surgery i have been left with adhesions (29/10/18ltr) and i have IBS, Fibromyalgia and CFS. I experience at least once a week fecal incontinence (physio letter 25/02/20) This is sudden onset, loss of control. It is always preceded by much left sided pain and can happen as I stand or when walking. It is highly embarrassing and has a big impact on the quality of my life. I have enclosed Dr .. letters as he notes these longstanding issues and the toll on my mental health, also the risk that further surgery has no guarantee of improvement (19/2/20)
My daughter is my carer and on these days when I am in acute pain she helps me, provides clean clothes and deals with the washing which adds to the embarrassment. She also helps with medicine which at times is severe enough to require morphine (dr. Ltr 3/3/20) again this letter shows this is a chronic condition and further surgery will only result in more adhesions. I am left thoroughly exhausted and in pain weekly with these humiliating. I also suffer urinary incontinence and urology issues. Fibrogel and buscopen had no improvement I have found mebevine to have a slight improvement on stomach spasms but no change to incontinence. Since having a complete bowel loss in the car after a hospital appointment I make sure not to eat much in the 24 hours before an appointment. Neurology letter dated 14/6/22 confirms paragraph 2 I have bladder and bowel accidents. Bham QE MRI tethering sigmoid colon Adhesions Rectum/Bladder dome

What do you think? Thank you if you stayed with it, apologies for the essay.

Hi All,

Thank you for operating this forum and website, I learned so much.

I have CMT motor neuropathy, CFS and other long term health issues. My condition deteriorated in 2021 significantly.

I was on HB in 2021 when I had to apply for PIP. I was told as my circumstances changed I will now need to apply for UC and move there from HB.

Which I did, so I applied for UC on 25/05/21.
So my HB ended on 08/06/21 and received last payment on 15/06/21 for HB.

After months and months of waiting I finally had my assessment in October 2021 and was awarded PIP Daily Living Standard from 10/03/21 backdated.
(I had to wait for WCA for LWCRA months also, until February 2022. LWCRA was established and payment was backdated until the beginning of the 3 months waiting period.)

So for nearly a year I had to live on so little, in destitution as I only received UC basic and housing elements initially, until PIP and LWCRA payments were finally received months later.


So HB and PIP was overlapping between 10/03/21 and 25/05/21. I just learned a few days ago that I was entitled for DP and SDP.
I called the council and asked them what to do.

They said I need to submit evidence and a reason why my application is so late.

Can these payments be backdated? My only reasons for not applying earlier is that I was not aware of DP/SDP earlier, also the PIP was only awarded more than half year later after I left HB.

I don't know what evidence shall I submit that I wasn't aware of these elements and I am worried that if I don't submit my request properly, I will be denied.

(Currently I am in the process of appealing the PIP MR for both elements enhanced based on official error as significant and major evidence was omitted by both decision makers. So I am hoping that I will be entitled for Enhanced Disability Premium, too. But I don't want to wait until the end of the PIP appeal process to submit the HB DP/SDP application.)

Your advice would be kindly appreciated.

New style esa, first time applied and finally 2 weeks on had first phone call yesterday. I have pip but esa is all new to me, i have had to leave employment due to worsening conditions. My doctor has initially signed me off for 3 months and I have lots of consultants letters detailing my limitations, double incontinence etc. Question- i thought the call was a formality 'your in the system a questionnaire will be on its way eventually', but he started asking can you volunteer for 16 hours? I offered to send in consultants letters and explained a little, also having no sleep due to new cpap machine and cfs and he said eventually said no problem I have put you as no requirements for 4 months - but what does this actually mean?
It seems so much more complicated than the gov website suggested, surely they at somepoint look at your medical notes?
Any help greatly appreciated, sorry for the ramble

HI BIS

The lapsed appeal in 2019 , my argument was both MH and mobility.
In 2014 , the FFT award standard for moving around. That was fair. At the time although I still had ongoing MH , it was ok.
Happy Bunny. All fair.
However , time has crept on , things have progressed and my physical health and MH has been an ongoing issue.
Then all the shenanigans with PIP.
AT the time in 2019 both mobility and MH were big issues.
Fibroymalgia CFS OA all declining. GP has records of this.
I didnt accept the first offer of lapsed appeal , because not only was he rude and aggressive on the phone I said I would take my chances with the Tribunal , one who knew the law, one with medical qualification and someone who would understand the perils of chronic illness. He was not a happy bunny.
I also put in I had had an recent ESA assessment , f2f , and remained in the support group , used the same evidence and it was aknowledged , I met the criteria.
He rang back the next day .
Said he read the ESA medical report and decison and changed his decison.
But he went for 4 pts planning, ( MH Evidence) and 8 pts Mobility ( Tribunal 2014) although my ESA comment on walking less than 50 meters.
His parting commment was and I quote
"you wont get it next time, youll have to make a fresh claim"
Nice.
At the time of completing the AR1 in JUne last year, I was under MH services for 7 months. I provided the evidence. But nothing since last year , as constraints etc.
The HCP , did not aknowledge MH , but did "consider" prompting, but mentioned MH , but low mood, low medication.
As for the moving around. It was a telephone call.
Not sure how she saw me walk 50 meteres....?
I am in pain from the onset of walking ...time distance and speed all slow and covered by ESA.
Covered by GP etc...
So..my plan.
Im in an angry knot again.
Im sick of the way Fibromyalgia is gaslighted. Im sick of the way MH is swept under " no specialist input" carpet.
I contacted my GP . The DWP have not contacted the GP for medical evidence since 2014. And that was for ESA. Nothing for PIP.
I have a SARS , and will carefully pick through and send GP notes.
A close friend of 40 years , a retired CPN Nurse , offered help, and has written a banging statement.
But its the 7th July ......still NO decision letter!!

Im going to argue the fact 4 pts for planning with supporting evidence again.
and 12 points for moving around . Its a high bar.
If I lose the award , like I have done these past years ... so be it.
But im like a dog with a bone...I will not let go,

Good evening,

Would anyone happen to know if this is the correct address to send post to Universal Credit Full Service if sending by recorded delivery? -

UCFS Post, Canterbury BC
Nutwood House
Chaucer Road
Canterbury
Kent
CT1 1 ZZ

I'm asking because I want to send a 'subject access request' letter asking for all the DWP evidence used in making my WCA decision. The letters they send me (and the decision letter) always has the 'FREEPOST' address on it, but, now I know not to trust them one bit, I want to make sure I have proof my letter has been received. I found that address on 'thanet.gov.uk', but I thought i'd check here first if anyone's used it.

Thank you!

Just heard that been placed in the ESA support group from ESA50 form only. Long Covid for three years and found your guides so helpful and comprehensive in filling out the form.
Encouraging people, especially with Long Covid and CFS/ME, to apply. Have PIP standard for both too and just sent off review and requesting enhanced on mobility.
Thanks again

My Doctor has requested that I employ someone to help care for my elderly Mother of 90 who has been very ill past 10 months due to heart failure, cellulitis and now memory problems. Can anyone please advise whether claiming AA for my Mother may affect my benefits of ESA (support) and DLA? I have long term ME/CFS and the caring for Mum and Dad of 96 is beginning to cause me further health problems which I am in the process of being treated for. Difficult situation. Any feedback would be very much appreciated. Thank you.

Hi everyone I don’t know what to do my pip review was last March and have just received award and it’s been lowered to standard rate. Considering for the last 8 yrs have got higher rate and my pain from DDD , fibro and CFS has all got worse. I also wrote last year that I had a ruptured brain Annurisum and feb this year a major brain surgery to clip a bigger Annurisum . They don’t seem interested in this at all because the surgeon discharge letter said was fine. They stated that because my depression meds had not been increased and I’ve not seen anyone for my back pain recently was why it was lowered … for the last 2 years my brain probs have superseded anything else. Even though I survived brain Annurisum and brain surgery it has greatly debilitated me in lots of ways. I feel more depressed since receiving lower award . How can I explain this in a mandatory appeal
Please someone help they

Thank you Rita, I appreciate the encouragement. And have you read the news item about how we are all to be blackened as workshy?! our daughter was a much-loved-[by the patients - because she was NOT a dragon] medical receptionist. The manager bullied her out of work when medical issues inc CFS got the better of her; you would hope for better in a medical place wouldn't you! Oh how much she would LOVE to be back doing that job, but lives in twilight due to 7 conditions.
And I accepted early retirement when offered, to care for my older OH with several health issues. I'd like to see any of the mandarins/jobsworths do a 24 hours on duty role indefinitely, even if it is for someone you love. Forum questions so often mention 'can I have PIP AND be a carer?' so there's a lot of us out here.
Denby

Hi,
My son's PIP was due for review in November of this year but we got the review form in January. I understand it's not unusual for the DWP to send it out a long time in advance like this.
I submitted the form on time but have heard nothing since. My son's health has deteriorated since I sent in the form; he has autism and an anxiety disorder, plus ME/CFS. His anxiety disorder has became a lot worse; It has meant for instance he has been been unable to continue with a course of therapy he had started for for the ME/ CFS (I had told the DWP he was due to be starting this). It also means he would be unable to travel independently (he only receives the higher care component at the moment, no mobility). He is on a new daily medication to try and control the anxiety.
The review was by paper form, no online option. Should I contact the DWP to inform them of the change and if so how-write a letter to the address to which I sent the form? If so, in what format?
Or should I wait to tell them this when they do an assessment, which is presumably what they are planning to do?
Thanks in advance!