In the time available I have no amanuensis so DWP will get my best kidnap-demand writing. To be on the safe side I am throwing the book at them. Eighteen pages of evidence, unless I think of more, and I haven't filled the form in yet, which will need extra pages because the few lines they give are not enough for my crossings-out. Bear in mind the only changes I have are amitryptiline to boost the BuTrans patches and an increase in mood stabiliser for bi polar.
By the way, I read my form again, and they do annual checks. My dear chaps, you will get annual parcels.
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Lupiknits
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I thought they were cutting back on pip reviews if you have a life long condition it will cost a fortune to do pip reviews yearly or age l miss read that bit ,I hope it goes well for you I returned my paper work in Dec and mine is still waiting a response
Sorry Junebee. In my deep appreciation for and fondness of DWP I misread "annual" . That may have been a nightmare of course. The form says it's awarded for a set time ( in my case 2019) but they want to check any changes.
On the front letter they say they will write to you to when they have made a decision, or write if you need an assessment. You may have tried calling. Is it worth trying again? That's a very long time for a response. x
It is really annoying to fill these forms in, but make sure you think of everything. Over a few days jot down everything you do, you may be able to add things that are difficult that you hadn’t thought of to add to your many pages so far.
Don't they write to your doctor's and consultants ? I've just had my letter saying that my DLA is stopping and asking if I want to apply for pip , they ask you to ring with names addresses of gp and consultants and so I have assumed they must write to them .
When I went to DLA and then to PIp and PIp check, they asked for names and addresses, but to my knowledge have never contacted them. I supply DWP with my prescriptions, letters from specialists etc and then fill in the rest of the form.
Hope this helps. The GPs I know are not amused by communications from DWP, and specialists can take a very long time to respond. If your specialist has not copied letters to you, your GP surgery will print them out then you can include them as supporting evidence.
Ok Thank-you that's what I did for my esa and it was an absolute nightmare even with an amazing letter from my rhematologist , I did get the esa reinstated but only after months of stress and so not looking forward to this , my gp has no involvement in my care as I see consultant every 3 months and refused to help with esa saying whether you are fit for work is just a matter of opinion , obviously medical evidence and letters my consultants send to them mean nothing in their eyes . I am worried because my renal consultant says I am in remission from a renal point of view , he said that because the ibersartan he has given me for high blood pressure has reduced my protein leak to just a trace that indicates I have chronic kidney disease rather than lupus activity in my kidneys , he didn't say that in his letter to the gp he just put she remains in remission and so gp doesn't know I have chronic kidney disease and probably assumes I am as fit as a fiddle as he didn't put any renal results in the letter . I saw my rhematologist on the same day as the renal consultant and he wrote that disease is well controlled but they can't reduce any medication because a severe flare could result in further kidney damage or even organ failure , he put in his letter that I am ANA positive , RO positive c3 and raised dsdna and egfr in the 40s . My dsdna came down from 83 to 39 last year which is another reason why renal think I am in remission but it hasn't come down to normal and could go back up again it's always been up and down and when it went low once before I asked a different renal consultant if I was in remission and could I stop taking steroids and he said no it isn't remission it's just what we call a quiescent phase and not long after my dsdna started to go up again .I have googled remission in lupus and read that remission is some one who's results turn negative , are not on steroids or immunosuppressants and are symptom free for 3 years or more . All my results are positive and I still have joint pains severe fatigue rashes etc . I don't know whether to go through the stress of claiming pip and going through another one of those degrading assessments again , my esa runs out later in the year so will have that to go through all that again and the stress of that last time resulted in flares , it's disgusting we have to go through this , if our consultants say we have a chronic illness that's incurable that should be enough .
Buffy, I don't know much about ESA but for PIP you fill the answers according to how you are at your very worst. For you a flare might be your very worst. I included things like having to be encouraged to bother eating at my worst and not getting out of bed for pain and fatigue. Include all your blood results. You could be in remission at this moment, but not next week and your consultant said they cannot reduce the meds for fear of very severe results.
Do you have a Welfare Rights Officer at your Council? They can help you. For the first PIP she came and wrote it for me.
PIP stinks, but please do it. I assume they are trying to catch the falsifiers, but you are far from that x
Yes I did use welfare rights for esa , I was too honest on my form for esa and answered it varies for most of the answers . These assessors lie also , I am completely deaf in my right ear following surgery for an acoustic neuroma and further surgery to remove my eardrum , in the report they wrote several sentences implying that I had lied about being deaf , said I appeared to hear my name called in the waiting room , well yes I did with my left ear , then they actually wrote ," she heard a conversational voice in Both ears and wasn't even wearing a hearing aid , a hearing aid couldn't do anything as the ear connection to my brain was cut to get to the tumour and I don't have an eardrum to put a hearing aid in it's been removed and my ear sealed up because I was having leaks of CSF fluid . It doesn't matter how much evidence you give , it clearly stated I had had an acoustic neuroma on all the consultant letters I sent them . They didn't mention in the report that I had kidney disease or that I was on immunosuppressants it was an absolute joke .
If I use the language I'd like to I'd get thrown off the forum. Let's hope your PIP is a difference experience, and that you have a competent and truthful assessor. All I can say again is, think of your very worst day and answer it that way. Forget "sometimes I can". Think "can't" truthfully when it applies. If you go to an assessment, take someone with you who knows you well.
Aw Thank-you , I will give it a try and hope I get someone who knows about lupus . The person who saw me at my esa assessment was meant to be a doctor , apparently if you've had a brain tumor or any brain problems you have to see a doctor rather than a nurse or other medical professional ,this so called doctor when looking at my medication picked up my ibandronic which I take for my osteoporosis and said is this your lupus medication ? What doctor wouldn't know what ibandronic was , they must use doctors who have been struck off or failed their exams she looked puzzled when looking at all my medication and kept asking me what they were , she was no doctor . Good luck with your check I hope you don't get asked to go for an assessment, take care xx
Good for you sweetie. I did exactly the same I bombarded them with everything that I had and for me I think it worked in my favour. At the 12th hour I asked could I please have a home visit as I was worried that I couldn’t make the journey the next day and didn’t want to cancel. They called me back about 30 minuets later and told me that someone there had a cancellation and could see me the next morning.
I got a lovely lady and she was really helpful. A few weeks later I got enhanced rate on both and I have just had a rise a few days ago.
I wish you the best of luck and I hope that you have a good outcome. Take good care. Love and hugs 🤗🤗🌹🌹xx
I’m working at the moment and haven’t a clue about claiming for anything. But work is breaking me, I don’t know how much longer I can keep up with it.
So I’m trying to think of the future, if I can’t go on work wise what do I apply for cause today I’ve read so much about people applying and having these horrible assessments 😬 x
Not all have the horrible assessments lisa_s. Some here may not add to threads because they had an easier time and don't want to upset us. To be honest, I hate the whole process but my assessor was professional and decent.
Apply for PIP now. It is awarded whether you work or not and is tax free. The intention is to aid any extra costs caused by your illness. These costs are accrued whether you work or not. x
As lupiknits said you may get a decent assessor , someone I know said her assessor said people with lupus should not be forced to go for the assessments I suspect that assessor may have had experience of lupus .
It would be esa , unfortunately going for these horrible assessments is part of it I'm afraid , get help from welfare rights when claiming if you do have to claim in the future , you could claim pip aswell if you don't already , you can get pip even if you are working .
Thank you. It all just frightens me a bit, I’ve just been on the website and it’s all so complicated. It says I have to ring the number to apply, what kind of things do say say when I first call?
Are you looking at pip now or thinking of leaving work and claiming esa ? For pip they will just ask you your details name address etc , your national insurance number , names and addresses of your GP and consultants maybe your health condition not sure , they will then send you the forms to fill in , welfare rights will help you fill them in if you want them to , try not to be scared a lot on here have been through it and can help , I didn't know about welfare rights until someone on here told me about them and they were amazing when I claimed esa when I lost my job .
I don’t know what my plan is or what to claim to be honest. I just know I’m really struggling at work and don’t know if I can do it much longer and I’m struggling at home. All I seem to do is rest and find easy options to do tasks around the house, trying to not let on to my partner how much I’m struggling.
He waits on me hand and foot when he’s home to be fair but works longs shifts. So it’s hard looking after myself and six year old and school runs etc when he’s not here.
Morning sweetie that is very true about the horrible assessment but everyone isn’t the same.
By the sounds of it you have to get things sorted out for when you can’t go to work anymore. The only thing is if you’re working then I don’t think that you will be able to get pip.
I truly hope that everything will go fine for you and you will get a nice assessor when the time comes. Good luck sweetie. Love and hugs 🤗🤗🌹🌹😘😘🤞🤞
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Getting in my own way (i.e., it's ok to get help)
Worried sick about my PIP mobility rate been taken 
Over thinking things 
