PIP, reviews & change of circumstances - Fibromyalgia Acti...

Fibromyalgia Action UK

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PIP, reviews & change of circumstances

Farmerboy
Farmerboy

Hello members, if you are one of many waiting for a review you will or already have been given an extension to your current PIP award from 12 to 18 months. Those who have put in for a change of circumstances these claims will be assesedy when the back log of new claimants for PIP have been approved or declined. The reason for this is those already receiving PIP have money going into their bank accounts and the delays will in able new claimants to receive money if approved for the benefit PIP. This was all explained to me after a 40 minutes wait by the DWP.

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I have my health assessment in Tuesday over the phone for esa. I'm so worried about it 😞.

Farmerboy
Farmerboy in reply to angiecxx

ESA are going on as usual.

angiecxx
angiecxx in reply to Farmerboy

Yeah I know, it's just very nerve wracking not knowing how it's going to go.

Painny
Painny in reply to angiecxx

It’s nerve wracking, as if they want to catch you! But take your time, you will be OK if you back it up with medical evidence Good luck 🤞

angiecxx
angiecxx in reply to Painny

That's the thing is i haven't seen a dr in a long time because before the pandemic if i did make it to the surgery i was always told there's nothing else i can do for you. And obviously since the pandemic it's been really really difficult to even talk to a dr. My daughter is going to be here with me as she looks after me and does alot around the house. Surely they must know that the conditions i have are not curable which means that they will never go away and i suffer on a daily basis. At my last assessment the lady basically said to my then boyfriend so you do this that etc and we were in the assessment centre for maybe 20 minutes. I was placed in the support group and still am. I filled out a form last year you know the one you have to fill out before you have a medical and since then I've heard nothing up til this Monday about my assessment next week. I just can't stop thinking about it. 😞😞

s2319
s2319 in reply to angiecxx

can you call your doctor and update them on how you are suffering so they are aware if you need evidence, just take your time in answering their questions

good luck and hope you get what your entitled to

Take Care

angiecxx
angiecxx in reply to s2319

I rang my surgery Wednesday and the receptionist said that at the moment they aren't doing letters for the dwp. And i have no idea who my gp is as the one I use to see left. X

Farmerboy
Farmerboy in reply to angiecxx

Hello, having your GP write a supporting letter for PIP will not help as the GP can only confirm your diagnosis and not how your condition affects your daily live in relation to the PIP descriptiors.

angiecxx
angiecxx in reply to Farmerboy

My assessment isn't for pip it's for esa. I'm in the support group and have been for over 2 and a half years now. I explained to the receptionist why i needed a letter and she said at the moment the Dr's aren't doing any letters for the dwp but the dwp can contact my surgery and ask about my conditions. It's hard enough getting through to the surgery. And i only got the letter about my assessment on Monday and my telephone appointment is this Tuesday coming. I thought normally they give you a few weeks to get letters etc. I can't do anything about it but hope and pray that they will keep me in the support group. My daughter is going to be with me when they ring so she can tell them what I'm like on s daily basis, she's the main person who looks after me and does things around the house and shopping etc. I'm still worrying about it even though people keep telling me not to 😒

Farmerboy
Farmerboy in reply to angiecxx

Again the GPS can only confirm your illnesses, disability, diagnosis. Which the DWP already know about. Try not to worry and it could be a matter of making sure your illnesses or inabilities have not improved and that you still need to remain in the support group. Wait a week and phone DWP and request a copy of your assessment report you may or should be able to work out what the outcome will or maybe weeks before the official award notification letter. In which case you are already looking at ways to challenge the decision if not in your favour.

angiecxx
angiecxx in reply to Farmerboy

Okay thank you for your advice. The dwp had my medical notes and a letter from my dr when I went for my last assessment so fingers crossed they still have them. Im really hoping it's just a case of them asking if my conditions haven't changed and things are still the same. If anything I'm worse than what I was. Once again thank you for your help.

mattjoachim
mattjoachim in reply to angiecxx

I went for FtF assessment for Esa on Sep 2016 after receiving no points went ro appeal and was put in support group. Then again in Sep 2019 another form and FtF assessmentThis time I asked for a copy of assessors report after assessment and I could not believe the false information again on it First they said assessment was nearly 2 hours long my Ftf only lasted 10 minutes It also said I drove there and I did not as I attended with my son who was present at my assessment There was more false information on it so I complained to Maximus who are the assessors In the meantime the DWP wrote to me and still left me in support group The reply back to my complaint to Maximus said the reason for my assessment time on my report not been correct was a computer error and the reason my report said I drove there was because this is a phrase the computer software uses to compose the reports supplies and does not necessarily mean that you drove to the Assessment Centre, but rather attended by car Should you have attended alone then this would mean I drove myself but as my son was present at my FtF assessment then this simply meant I travelled to Assessment by car How can that answer make sense to anyone? The reason I complained and wanted an answer was I was having a PIP assessment only2 months later transferring over from DLA to PIP and I wanted any incorrect information to be corrected I clearly told the assessor at my FtF Assessment for Esa with my son present , when she asked how I got here today I told her as did my son He drove me there still they put false information on a repott

I don't believe that it was a computer error the program would have had modes of transport and the assessor would tick the appropriate one. Q, how did you arrive, could have been by bike a tamdan, taxi, car you drove, or you where a passenger, bus, train and taxi, there is, was no excuse for not putting down the correct mode of transport used.

They are trying to say the computer software generated the answer about driving also she said she observed me sitting on a seat for 50 minutes and i was only there for 15 minutes and the rason she never carried no physical examination was I was going through a flare of polyarticulatgout so it was not deemed necessary

What I found a bit odd was just 12 weeks after my Esa essessment I went for Pip assessment transferring over from Dla T he first question I was asked was Have you a drivers licence

Ajay575
Ajay575 in reply to mattjoachim

Hi the drivers driver's license usually leads to next question do you drive If so that flags up questions to be explored in the care questions as you will struggle to get points on certain care criteria i.e chopping vegetables, aids for toilet hand rail etc ,it is normal

mattjoachim
mattjoachim in reply to Ajay575

Iwas on HRM and LRC on DLA My Gp wrote me a letter which I sent off with my PIP form On the doctors letter she put down my conditions and the joints effected with the thermoset of flare up i have had in the last year That letter was ignored and the assessor at my Pip assessment wrote that I don't have flare up the majority of the time So I complained to IAS at the same time done an MR to DWP as they were awarding standard for care and mobility on PIP I then got a letter from IAS apologising stating that the assessors report was not factual as the letter from my GP was stating that I have flare more that 50% of the time and this information was with the assessor at the time of my assessment yet she wrote I don't have flareups the majority of the time and that the case manager at the DWP wanted more information They wrote to my GP again for a factual report and that was only confirming what she had earlier put on first letter. Then they wrote to me and awarded me enhanced mobility and enhanced care for an on going says they contact me again 2030 The thing is when I done my MR i asked them to look at mobility as i was happy with standard care but I not complaining as they looked at the whole claim again after getting the factual from my GP

Ajay575
Ajay575 in reply to mattjoachim

Was going to mention majority of time Thats good it worked out in the end for you

Lots have been through similar to yourself from DLA and many not had the fight you had

It is a reminder for others this goes on

And even send a factual report in with your forms

Glad your stress is over now

Georgie777
Georgie777 in reply to Ajay575

Ajay could I ask you please. My doctor did a factual report for me in 2013 when I applied for DLA she was contacted by DWP and this was requested from her. DWP sent me a letter notifying me that they had requested a factual report from my GP. As a result I was awarded DLA. I was awarded PIP on the swap over - but at a lower rate on the care side - I got a 4 year award (I had a home assessment) now my PIP expires in April 2021 so I await the renewal forms even tho I have had an extension. I forgot to mention that my Dr had submitted a factual report when I filled out the PIP form to transfer over. Not sure it would have made any difference anyway. But my question is Where could I get a copy of the said factual report from 2013 that she completed.? Is it even possible to get a copy please? I have 2 other serious conditions since the report anyway - Severe Heart disease with Angina and COPD. So would it make a difference anyway. I have been diagnosed with COPD since my last PIP assessment. Sorry for the rather long post and hope it makes sense - Many Thanks Ajay. 😀

Ajay575
Ajay575 in reply to Georgie777

Hi try not worry you should be fine and been on it a good while very unlikely to be taken away ,sorry to hear about the conditions , If the doctor wrote it it will only be the dwp who have it

But that's fine all your notes are with the dwp you will not need a copy on renewal just put on renewal and remind them to look at all your medical reports and dla that they have ,im sure you will be fine ,send an updated one in with forms ,

Do you not want to put in for a change of circumstances now i would deffenetly do that with all these new issuies specially those ones you have and all the factual reports they have try considering a change of circumstances if you can you have been on this a long time and they will know this,

You could ask dwp for those reports

It would not make any difference though as it is on your files and always remind them to look at them

i put in for change for relative similar to yourself at it was fine

And the rate your on just now is not the right rate for you specially with all your restrictions you have

Your renewal will probaly be next year

You should tell them and hopefully get the 2 rates and enhanced

Georgie777
Georgie777 in reply to Ajay575

Hi Ajay thankyou for your reply. My current award ends in April 2021 so I will wait for the renewal I think. You know I just scraped through last time with points purely for the use of aids. \so my DLA award for care was lowered to standard when I swapped over to PIP. I already had my Heart disease and angina then and my consultant wanted me to have a bypass - but I didn't want to as I live on my own - and I just have 1 daughter - who was on the waiting list to have a non malgnant brain tumour removed - I just couldn't take any more stress at the time. Now I have been diagnosed with COPD by a spirometry test and a chest xray - I don't know what level it is tho. But I can't do a lot with my breathing and have to keep sitting down. Ive also got spondylosis in my kneck and osteoarthritis in my knees and I had a Lacunar Infarct st Stroke (which is a small bleed on my brain. I have no idea how I would get enhanced - they didn't even take any notice of the fact I can't get in and out of the bath without help - it was just aids. And I told the assessor I haven't got the energy most days to even cook a meal - but it was yes you can with aids. Same with dressing.

My doctor wrote a fab supporting letter when I swapped to PIP - but I was only awarded it for the use of aids as I said. I did get the high rate mobility tho.

I should have done an MR at the time I think - but the stress of it all made me really ill. I just could not face it.

I'm starting to stress again now - which isn't good for me.

What conditions did your friend have if you don't mind me asking Ajay? and did they get enhanced. I'm 63 btw and all my conditions are long term and degenerative.

I do appreciate your reply and many thanks.

Ajay575
Ajay575 in reply to Georgie777

Hi it is understandable to wait and is stressfull for you ,but do be thorough next time and the things you have said on here should be enough, with your age your next assessment or next again one is important as they are more thourough they say ,after the year when things ease off a bit i would check around to see if any good wellfair rights in your area through council they are good and maybe take it to them next year with change of circumstances specially with the rate your on ,if you had 1 enhanced fine but you are low and basic rate for your restru tions etc ,if wellfair rights are not available you could try cab ,with you saying about enhanced it is not as daunting as you think and a couple of tweets here and there would do it and with you mentioning points for aids (minimum) you should not just be getting points for aids 1 or 2 without aids would get you enhanced and your to severe to just be getting lots of points for useing aids ,dressing lower part is same points as auds exsample,but between shoulder and waist gets more points make things like that more prominent thinks like that and the cooking etc, your advice from cab or wellfair right will help you ,

The friends one was arthritis and angina ,and copd was dla to pip long term and got standard care enhanced mobility

Put in for change to go for enhanced care and got it, copd got worse reason for (change of circumstances )

The other was heart conditions and skin issues put in for change from standard both got both enhanced rates and worked to not saying as member said before did not believe it was a window cleaner 😊 but got it no probs for the daily dressings to skin and treatments

Dressing cloths on off etc

And washing bathing

And mobility

Georgie777
Georgie777 in reply to Ajay575

Awww thanks Ajay that's a big help - I'm worried that they will hold the fact that I drive against me - (and say that because I drive I'm capable of doing the daily activities with aids) I've read so much about that. I hardly drive tho - I only do about 200 miles a year if that. I've got to have a car as I can't cross the roads - I cant get across fast enough and I just freeze with fright.

And on the renewal they are asking if you can go out without assistance - well on the odd occasion yes - but it has to be in non peak times - and reliant on the weather conditions. But I'm sure the odd occasion will go against me.

Maybe I'm worrying too much.

I think - as you do - that I shouldn't be getting the daily living solely on aids - there is a local welfare rights by me. So if I have a problem at renewal - your right - I defo need to get them involved - that's if you can get an appointment now with this covid and within the timescale.

As an example when I had my home assessment - I had Ensure plus drinks in a huge carton in the hall - and all on my worktops in the kitchen - prescribed by the dr and delivered by the chemist because I had lost a lot of weight as I wasnt eating - (she could clearly see these) it was never mentioned and her report said I can cook a meal with aids. I had already told her i'm in too much pain, breathless and exhausted to do this reliably for myself. Im not prescribed them now tho - as my weight has increased thankfully.

It's a minefield isn't it - with a rather stupid points scoring system.

Ajay575
Ajay575 in reply to Georgie777

Hi the going out without assistance if with saying the odd time if it is less than majority off time then you put no you cannot go out without assistance do not even tell them just put majority off time thats unless they ask you, then you explain, The driveing yes they do seem to be useing this a lot the now and it is on the assessors guidelines to explore this and not assessors fault again put majority of time and do not mention driveing unless they ask then be clear ,the eating and cartons and drinks put all that down and they are prescibed by doctors that should help everything you have said on here as well

Do try wellfair rights as wordings and maybe law is important in your case i would even consider the fee paid help from

(Fightback4justice) ,they are good and can do your forms for you

Mistyang useses them and they are really good

Georgie777
Georgie777 in reply to Ajay575

Oh bless you Ajay - I will tick the box then (when it comes) that I need assistance to go out. I have evidence of this in a letter off the physiotherapist - he states to go out with assistance in non peak times and to use my walking stick to aid my breathing or my sit down walker so I can sit down and rest when I need to.

I wont mention the car - but when the assessor came to my home in april 2017 my car was obvs on my drive. She asked me about my driving - I stated the truth that I hardly use my car - but do use it about once or twice a week to go to my daughters and aunts which is less than a mile away for both - and that I cannot drive in rush hour traffic. She did put all that in my report - but it didn't go against me as I was awarded Enhanced mobility. So maybe |I am worrying too much - and if it becomes a problem I will send my past MOT certificate which shows about 4 years of mileage - all under 200.

I'm not prescribed the drinks anymore Ajay - as my weight is ok now. So I will leave that out.

I also had an ESA assessment in Jan 2018 - I had to have it with a Doctor due to the stroke incident. He did say I should not have had to attend and was really apologetic - he said my evidence hadn't come through in time. I have a copy of the report which states all my struggles - result of the medical - and the fact I had to keep stopping every 12 mtrs and this was consistent he wrote. So I think that would be good evidence to send to them too and i was put into the support group again and he stated Long Term.

You have been a great help Ajay and many thanks to you. It is very stressful not knowing when the review form will arrive - and seems to dominate my thoughts - with having to fill it in again. Argh. I do feel a bit more relaxed now tho - after your good advice. Thankyou for taking the time to reply -it's so appreciated.

Ajay575
Ajay575 in reply to Georgie777

He ,that letter from physio is very strong and put that at top of pile and make it prominent that coukd stop you getting a f2f maybe, and mention the letter on form and stick another copy at bottom of pike as well for good luck , the drinks oh know do mention that still and all other meds in the past and others that did not works as well the bigger the better as they sometimes use this to determine lenth of award ,That docs ketter and consistent as well is strong bring this to their attention for the enhanced mobility

You should be fine, but maybe try wellfair rights or fightback4justice as you do have strong evidence, if ot take your time on paper for a week first ,

You should be fine but is the dwp

glad you have this evidence should help alot

Guard it like gold 😊 and only photo copies to dwp

Hope it all goes good for you

You can request through a Right of Access all information held by DWP in relation to your pPIP claim that they hold. All your past forms and doctors letters they hold will be in your file. I requested mine this July and it took about 5 weeks before I got it Everything was on there going back to 2009. They have to give it to you. Ring up the munber for PIP and then follow up your phone call with a letter with your request There is also an email address to make your request rightofaccess.requests@dwp.gov.uk

Thankyou mattjoachim - If they do mess me about on the renewal - I will do this. Glad to know I can get hold of it anyway. Many thanks for replying. Very grateful. This is all sooo stressful.

Be prepared for a big package of papers relating to any information DWP has on you, I did the same and received over 150 Niger than A4 size pages most got shreeded I just kept the PIP reports and a few others interesting but please think of the waste of paper your getting and have to store should you decide to keep it all.

Farmerboy
Farmerboy in reply to Ajay575

Morning Ajay, just being able to drive opens up multitude of questions as you rightly say, from grip strength, agility, thought process,. Those of us who do drive will know how stressful just driving to the supermarket is.

Having a drivers licence does not mean i drive a car so i think that question in phrased to make it look like if you have a drivers licence you automatically drive a car. When i reached 55 the DVLA wrote to me and sent me a form to get my doctor to sign because I used to have Cand D1 on my drivers licence also now they are removed now only B on my licence and if I can drive when not in a flare up then they should listen to what a GP writes in the first place stating that I suffer with flareup the majority of the time When not in a flare up i would be able to drive. My son does all the driving now anyway

I went for an esa assessment and got a taxi there. The awful assessor tried to imply that because I could think about how to order a taxi that I was therefore fit for work and because I could remember my height rnd weight roughly due to those having at that time recently having been done at a gp or hospital appointment and me remembering because those were written down for me that I was therefore fit for work and a liar that nothing was wrong with me I was making it all up. Also tried to say because I could hold a pen I was also lying. I wasn't there for that esa health assessment for muscular impairment or any disability in movement and she knew that. Went to tribunal, judge was angry ordered they leave me alone and that I shouldn't even be there. That it was very apparent how unwell I was/still am and asked I leave the room/court. The person helping me remained in there, l heard shouting, judge was furious telling them how awful their behaviour was, how they were trying to twist and had twisted my responses and the only liars were them. And how dare they drag me through that with so little regard for my mental state and health and waste her time. The judge threw them out. That happened many years ago and not long after new assessors replaced the old lot because there was a big hoohar about them lying and penalising people. It was in the newspapers about those assessors at the time " not mine I mean them all, can't remember the name of them, but those new assessors who took over were human" however everyday in the back of my mind always worrying is the dreaded letter for yet another esa health assessment in the post landing on my doormat which takes me to a very dark suicidal place when they arrive because my issues are not necessarily visible but impeeded every aspect of my life immensely. And to show how isn't always possible can only be voiced. During that tribunal long ago I was so glad l had a support worker with me who called out all the assessors lies on my behalf because I was emotionally and mentally wasted and highly stressed ready to punch that lying assessor. And the judge recognised also I was going to blow. I'm overdue an assessment and it is troubling me a lot causing massive issues making me very unsettled not knowing what will happen, but in my last assessment I did ask if I'd have to go through another assessment ever again and explained how it impacts me. Was told possibly not but it would be taken into account the impact they have upon me. I know one is coming soon, and there there will be spies on here checking up on people like us. And it won't surprise me if not long after posting this I do then receive a letter for a health assessment, but of course they would claim purely coincidental. However I'm very ill not stupid! It's right assessors ask questions as some people do lie and try to con the system, but it isn't right for assessors to twist our words and note down and tell ouright lies or make accusations or imply negative twisted untrue things to us as they need to understand the toll health assessments and tribunals if necessary take upon us when already very unwell and potentially mentally and emotionally unstable and not treat us inhumanely or as complete liars.

angiecxx
angiecxx in reply to mattjoachim

That's so bad about the driving!!! The assessment centre i had to go to is an hours drive away and 3 hours by bus, its not even in the town its on the outskirts which means getting another bus to the centre. There's no trains that go straight from where i live to the town near the centre and i couldn't go through the stress and pain and exhaustion of getting a bus so my only way of getting there is for someone to take me by car. I'm kind of relieved that the assessment is over the phone even though i keep crying and getting myself into a state thinking of what could or will happen. My daughter is going to be with me on Tuesday. Surely they know that chronic health conditions which aren't curable aren't going to go away or get better. I have been more depressed the past few months and my daughter is the only one who knows what im going through depression wise. I don't want to burden others with how I'm feeling especially my two youngest children. My daughter who is 17 does most things for me and that includes making sure my other two children are ready for school etc. She does so much for me and it makes me feel so guilty because it shouldn't be up to her to do everything that I can't do. I honestly don't know what I'd do without her.

mattjoachim
mattjoachim in reply to angiecxx

I say you be OK as it a lot better over the phone. Just so you know who ever is there with you will not be able to speak on your behalf unless you have informed the DWP before hand. You should be fine anyway lot of the time they are also looking at the previous report as well so as you are already in support group that bodes well for you

angiecxx
angiecxx in reply to mattjoachim

In the letter i got it said I can have someone with me when my assessment is taking place but I will tell them that my daughter is with me. Thank you for your help.

Farmerboy
Farmerboy in reply to angiecxx

Hello, when you or anybody uses public transport the assessor knows the distance from car parks, bus stops train stations and even the distance from the waiting rooms to the assessment office. If it’s a pip assessment you can claim your travelling expenses and when I had to have an ESA which wasn’t needed they arranged the transport so in the case of my two PIP assessments I had a taxi door to door at £80 each way paid and claimed and money was back in my account within 14 days of sending forms to claim.

angiecxx
angiecxx in reply to Farmerboy

That's good of them to do that. But I wouldn't have the money upfront to pay for a taxi there and back not even just going there. It costs 35 pounds just to go to the next town to me and that's only 8 miles away imagine how much it would cost to get a taxi for over an hour away. When I went for a face to face assessment i did claim back petrol expenses for the person who took me. X

debstennant
debstennant in reply to angiecxx

Hi I know what you mean I have got an over the phone appointment for PIP. I to can't stop thinking about it

angiecxx
angiecxx in reply to debstennant

It's horrible isn't it not knowing how it's going to go. Good luck with your assessment, i hope 8t goes well my lovely.🤞🤞

debstennant
debstennant in reply to angiecxx

Thankyou and you too x

I went to the same interview and they had a report from my GP. I just went in and told them how my illnesses affect me. I was crying as they had made me wait and my medication was wearing off. The nurse I saw actually understood all about fibromyalgia and it went through. The interview I had previously, I thought the woman was being difficult and was surprised when she awarded me the benefit. Just go in, take a deep breath and tell the truth, the whole truth. I mean this as sometimes we find it hard to tell strangers that we are sometimes incontinent etc. I did this and it doesn't help when you hold things back.Good luck and keep breathing deeply x

Bless you. The incontinence is the most embarrassing bit to tell the assessor 😳. And since I've had a hysterectomy and my specialist found endometriosis on my bowels and bladder and scraped some of it away it has left me with scar tissue which has made me even worse. Sometimes i never know what's causing the pain and fatigue etc, whether its fibro or endometriosis 😔

Being honest and telling the HP, doctor, nurse who ever needs accurate information about your concerns and conditions bare all don't be embarrassed they will have heard it all before.

And here's me too ,Would never trust a word from the dwp ,specially over a phone ☹

Farmerboy
Farmerboy in reply to Ajay575

Morning Ajay, I had phoned twice to enquire about my phone interview for a change of circumstances, the first call I was informed it at been forwarded to the assessment company. On tracking down the company and being referred back to the DWP it was then that a pleasant lady explained what was happening I have no reason to doubt her answer on the reason why she gave me the answer she did.

angiecxx
angiecxx in reply to Ajay575

Hi Ajay i hope you are well., 😊

Ajay575
Ajay575 in reply to angiecxx

No bad thanks and you too and hopefully you do no hear from dwp ever again 🤞

angiecxx
angiecxx in reply to Ajay575

Im okay thanks my lovely. I will be worrying waiting for the dreaded call saying that I haven't been awarded it again. Be great if they didn't contact me again lol but we all know what they are like. 🙄

The people who deal with ESA are completely different from the PIP assessment. I have been turned down three times for PIP! I've been told that I told the assessor, who came to my house that I can run up my stairs in three seconds and that I didn't look as if I'd lost weight! I'd never seen her before, so how would she know? At my appeal, I was refused again. One of the reasons was that I didn't look as if I was in pain! You cannot see pain, so that comment hurt me but I'm not giving up! By comparison, the ESA staff are human, compared to the aliens that work in the PIP departments. There's a big difference, I've found

The amount of comments I've heard from people because my illnesses aren't visible is unreal!!. The one you said about it hurt you when you were told it didn't look like you were in pain is one I've heard so many times for many years. It use to upset me and then it went to making me angry to annoying me to now i don't care what people think i know what's wrong with me, i know when I'm in pain. That's why I'm awake now because I have this really bad pain at the bottom of my ribs but in the middle. It's like someone is poking me with a hot poker constantly. I've had it so many times before and nothing i do or take to relieve the pain helps. I've had so many tests endoscopy's done only to find out that it fibro related, i can't remember what it's called. It's something to do with inflammation. I just wait for it to ease off which sometimes can be days. I can't eat certain things because it aggravates it more. I've even been to a..n.e before and the dr gave me some morphine which helped for a couple of hours. It's just horrible 😔x

I take morphine twice a day plus a cocktail of other drugs. Don't forget IBS. That could be your problem as well. Trapped gas can be painful. When I get trapped wind I use, soda water, peppermint oil capsules or peppermint tea. Issues with other fibromyalgia linked illnesses could be your problem. I suffer from insomnia, that's why I'm up as well as the restless legs and uncontrollable body temperature. I just welcome my differences as that makes me original but perfectly different! 🤪

I take medication for ibs have been for years. I've tried peppermint capsules and tea, buscopan nothing helps. So many Dr's over the years have said it's ibs but after last endoscopy the dr who done the endoscopy told me that i have bad inflammation in my ribs and gullet and then told me what it's called but I can't remember what it's called. Lol.

What time do you normally fall asleep at? It must be so frustrating having restless leg syndrome 😔. Do you manage to sleep during the day?

I can fall asleep whenever my body is able to. Anyplace, anytime. I don't care. I'll even park up my car and sleep if I have to. Sometimes I visit friends and family and then suddenly I feel extremely tired. Everyone is aware and they let me sleep, even if they have to drive my car with me in the back! 🤔🤪

I feel guilty for falling asleep when ny kids are here. I sleep during the day when they are sr school sometimes but because most days im drained come 6pm/7pm I'm lying down on the sofa hoping I'll be able to stay awake the next thing i know is one of my kids are waking me up and telling me that it's a certain time and I'm constantly saying sorry to them for falling asleep, even though they understand why I'm so tired. 😴😴

Sleep when they sleep. Have a grazing table during the day with all healthy foods for them to graze on. Make housework fun for all ages and reward and praise them and most importantly, explain to them about your condition. When I have all five children over, three glamchildren and a niece and nephew. My 3yr old glamdaughter loves to mop with my spray mop, my 7yr old neice, just learnt to tie laces, so she gets a pound for tying mine. My 14 Yr old nephew loves to cook, so I sit and supervise. They love it when we all cook a meal together. The three year old always remembers that glamma needs her stick when we go out. Both my neice and glamdaughter actually asked for their own walking sticks, which I got them over a year ago and for months their parents said they practiced walking like me 🤪🤪😜😜

Aww that's so cute ❤️. I have 5 children. Two currently are at university but because it's all online one is living in Poland and the other is doing his 3rd year abroad in Germany but it's still online. They are both home for Christmas which I'm so looking forward to 😊. Then I have a 17 year old, she's in 6th form but does a lot of work online from home because she looks after me and helps me out and my other two are 12 and 11 and they are so wonderful and helpful. They know what health conditions i have and when I'm in pain my 12 year old daughter always gets me a heat pad and makes me a cup of tea and my 11 year old is always telling me to rest up or runs me a bath. They all help out when they are here. I feel so guilty though 😔. X

Your children sound great. Don't feel guilty, having someone with health issues in the family help children to grow more balanced. My glamchildren always notice people with mobility issues and help them, not state at them. They even notice the types of sticks or mobility scooters they use. Don't feel guilty about raising amazing children. I can't do the things that I used to do but children understand more than adults do. You're truly blessed with your children. All you have to do is believe it and look on the bright side of life, as the song goes xxx

I bought a washer dryer and put it in my bathroom. Little things like this make a big difference to your lifestyle. Think about how something simple like a washer dryer in your bathroom can help you. My friends thought that it was weird but now they're thinking about doing the same thing! Take off your clothes in the bathroom, straight into the machine, then straight into wardrobes and drawers. When I have the gang here, I set the machine at night, they all put their clothes in and my 14yr old nephew just switches it on. Makes my life easier. Children can make cereal, juice and yougurt for breakfast, without supervision, once it's all on the table when they wake. It's not what you do, it's how you do it. Think differently abled, not disabled!

I couldn't fit a washer dryer in my bathroom lol it's so small lol. My bedroom is downstairs and the tumble dryer is in my bedroom so i can sit on my bed and take the washing out and fold it up. X

Whatever makes life easier for You! X

I had mine for pip over fone about week ago. I was so nervous. I feel man didn't really listen to me now got to wait for 8 weeks see if it will continue good luck with yours 👍❤️❤️

Farmerboy
Farmerboy in reply to Kel6

Hello, now you have had your assessment you can request a copy of your assessment report and on receiving it you can workout what you're award may should be but you still have to wait for the official award confirmation letter.

Kel6
Kel6 in reply to Farmerboy

Ahh thank you for this information i had no idea that you could do this thanks 👍🙂

Hello Farmerboy and to anyone who can advise of ESA in which I am in the Support Group. The ESA was up November just gone but I have'nt heard anything from the DWP and I am unsure of the procedure as this is my first 18 months of being in the Support Group. Thank you in advance.

Ajay575
Ajay575 in reply to sueshepy

I would not phone them You probaly will hear from them

But who knows

I know lots in your position and in support group and heard nothing 5 years on and some peoples rieviews been switched off by error as well if getting payments stay away from dwp ,only my personal view . Know saying this is the case unlikely but you never know

sueshepy
sueshepy in reply to Ajay575

Thank you Ajay575 I will take your advice.

Farmerboy
Farmerboy in reply to sueshepy

I was had a PIP assessment and was due to go for a ESA assessment and when I phoned for transportation I was informed I had been placed in the support group that was 4 years ago due to retire onto state pension next March never had a review only letters information of benefits increase. If the money keeps flowing into your account let it be unless you feel guilty and want confirmation that your still entitled to ESA support group payment.

sueshepy
sueshepy in reply to Farmerboy

Thank you for the info. I've retired on ill health after working 40 years. Ill never be able to hold down a job

MALC19
MALC19 in reply to sueshepy

Hi i have been in support group for ESA for many years now. The only time i hear from DWP is when i get a letter around April every year to tell me how much my entitlement is.ESA support group is not dealt with the same as PIP as it just carries on year after year.

The only time i was asked to go for a review was when government wanted the whole country to be re-checked by ATOS.

Hope this helps clarify for you.

Keep well 😊😊

sueshepy
sueshepy in reply to MALC19

Thanks for your reply and great information. You too keep well x

Once your money doesn't stop, don't worry as my support ESA has never run out. Once you're getting your payments, don't worry. If your payments stop, then call them. They know your getting the support part, so they tend to know whether you'll be getting better or worse. This has been my experience.

Thank you for the advice.

Morning everyone DWP is very unpredictable. My renewal assessment was on the phone for 14 minutes.

My daughter’s renewal forms were sent and they said it was extended until 2021 but they called and did a telephone assessment without prior notification for an unbelievable 4 minutes. Thankfully they didn’t change the award and she got both enhanced or 4 years.

Sincerely wish u all get it the same way. 🙏🏼

mattjoachim
mattjoachim in reply to h3lpm3

A lot of people on double enhanced getting ongoing awards. That what happened in my case

Your case like many others is straightforward nothing is going to change or improve hence why you and other have had your awards extended long term. This Covid-19 pandemic has helped some people avoiding assessments for their reviews.

I read on another web site that the DWP are looking to put more people with a double enhanced award on on going awards at this reduces the need for unnecessary reviews.

angiecxx
angiecxx in reply to mattjoachim

What's double enhanced award?

mattjoachim
mattjoachim in reply to angiecxx

Sorry Its means enhanced rate mobility and enhanced rate care of PIP

angiecxx
angiecxx in reply to mattjoachim

Ah okay. I've never applied for pip because I always think one the amount of forms that you have to fill out and two i don't think I'd get it. I can't sit there and fill out all the forms, it's bad enough having to fill out the forms for esa.🙄

Ajay575
Ajay575 in reply to angiecxx

You should really consider applying angie and look upon it as a bonus although by the sounds if it you are maybe entitled to it, Although it is diferrent from esa

esa support group claimants have a high success rate on pip applications

angiecxx
angiecxx in reply to Ajay575

I will look into it tomorrow. Can you apply online or do you have to fill out paper forms? X

angiecxx
angiecxx in reply to angiecxx

And does it take long to hear about an assessment? X

Ajay575
Ajay575 in reply to angiecxx

In know sure ,always thought forms they send them out to you and you have 28 days to fill in and send back, Yes it can take months for assessment probaly be, feb March april, and may june for decision something like that and time to get your docs notes all updated

It is backdated if successful though

When you phone have ready your

contact details

Date of birth

Narional insurance number

Bank or building insurance number sort code

Doctors name address and contact number

Number to phone

0800, 917, 2222

angiecxx
angiecxx in reply to Ajay575

Ah fab thank you my lovely. I will start the process tomorrow. X

Ajay575
Ajay575 in reply to angiecxx

Good luck Hopefully a telephone assessment

angiecxx
angiecxx in reply to Ajay575

I hope so. I will let you know how my esa assessment goes on Tuesday. Im still worrying so much about it 😕😕

Ajay575
Ajay575 in reply to angiecxx

I it is a worry Do tell them you are not any better and it is all long term and unlikely to change as well if it applys to yourself

These assessments are sometimes not needed it is stressfull

Mind tell them all your severitys as well

Good luck on tue

angiecxx
angiecxx in reply to Ajay575

Thanks my lovely x

angiecxx
angiecxx in reply to Ajay575

Hi i hope you are okay. Im just letting you know that my assessment went okay this morning. It lasted about 10 minutes. She asked me a few questions about medication and what I can do etc. She said she was just doing the assessment on fibro not endometriosis as well. She asked my daughter some questions about her helping me and does she do everything. Anyway at the end of the assessment I asked how long roughly it might be before I get a decision and the lady said it will be a while but to be honest i don't think much will change regarding your esa so my daughter said i know what mum will be like waiting for a decision and again the lady said i can't say because it's not me who makes the decision but I wouldn't worry about it i don't see much changing with your claim. So im not so stressed now but there's still that tiny bit of doubt. But I'm more positive than I was before the call.

Ajay575
Ajay575 in reply to angiecxx

Thats great ,hopefully she keeps her word Good it was only 10 mins as well that was good ,you should hear quicker than pip i would imagine stick in 👍

Farmerboy
Farmerboy in reply to Ajay575

If it your first application fir PIP then your application may be attended to before those who are getting PIP and need a review or change of circumstances.

I had my PIP telephone assessment on the phone today and since then I haven’t been able to stop crying. Silly I know but ridiculous questions like do you do light housework - no I can barely stand up, I struggle to walk. How is your doctor treating your vertigo - they haven’t I’ve had to go private. Has my condition worsened YES !!

Hi, I had my PIP halved because I have a driving licence. The fact I've held my licence for 30 years and find getting out a car difficult and very painful was of no importance. With the DWP the goalposts change constantly.

I've also found outcome depends greatly on the attitude of the 'health professional' you see or talk to.

My heart goes out to anyone waiting assessment with DWP. I end up a mess before these interviews.

Very best of luck.

Not waiting on a review but could do with a bit of advice.

I applied for ESA in June because I have been off work for just over a year and my SSP stopped in August 2019. I had the assessment at the end of July 2020 and am still waiting to hear if I am entitled to it or not.

I messaged my work coach in October and informed them of my diagnosis of fibromyalgia and degenerative lumbar disease. I had a phone call from dwp in October saying that my assessment had been done and I am still waiting to hear if I am entitled to it or not in December.

Do ye think that it should be taking this long??

Also applied for PIP around the same time in July and gave them all my info, they coerced me into answering questions that I couldn't answer like if I went out for a walk on a bad day they wanted to know how far I could walk, to which I replied that I dont go out at all on a bad day, to which they said I HAD to give them a rough guess which they used as my answer. This was among other questions I couldn't answer and was coerced into answering.

So obviously I got refused with 0 points in mobility and 6 in care part. I had received the diagnosis of my consultant in the mean time and have done a mandatory reconsideration with the evidence sent off as well as a personal letter telling them how I felt at being forced to answer questions and couldn't and also how my condition has deteriorated since my assessment.

Do ye think I could be more successful this time around?

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