Need advice please: Just had my PIP letter through... - LUPUS UK

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Need advice please


Just had my PIP letter through the post asking me to attend a face to face appointment in 2 weeks time , i sent all the evidence of with paper work and they are asking for me to take all my hospital appointments a GP appointments with me , I'm a bit confused as i have all ready sent this all off? I was awarded indefinite DLA but its not called this anymore we all have to apply for PIP under the new rules , i am so stressed and its making me ill i don't know what to expect ,

any advice please.

33 Replies

Its fine dont strrss they will go through questions with you take someone with you they need to know what medications you take thats all.tell them how you struggle you be fine dont panic takes abot 40 minutes...all told...had mine recently i was disappointed with outcome im appealing 6weeks in now taking for ever...backloggs.....but be aware answer carefully..they change it to there appeal as mine had been twisted to her words... but i was lucky my carer was there with me as wittness thats why im appealing...

rlupus in reply to bigfattoe11

Thanks for you reply i think its so unfair when i have been through so much since even being awarded DLA for life , This year alone i have been in hospital every other month with problems , but i have all ready decided i will fight all the way just like before when i went to appeal over the out come and i did win back over 18 years ago,

good luck wit yours let me know how you get on .

I am very luck i have all my GP evidence letters and care plan.And hospital appointments coming out my ears so many before christmas .

bigfattoe11 in reply to rlupus

I know ive had to fight aswell makes you so angry pip are fine just watch how you answer the question like can you cook the answer would be no as my carer does for me most of time...or i do try for a period of time but it is microwave meals.... not actually cooking its the truth but explain why.... just be careful as she said i can catch a bus impossoble im housebound... and my carer takes me shopping... ive had to appeal as them lied in there devision making by assersor comments but my carer was with me so im fighting it...a load of tosh... im paying for care services.... and still bin denied mobility.....

Yes ive got same hospital appointments bfore xmas have you got someone to come with you...please do...its i wouldnt have done so well without my carer been with me...ive got all my aids i have incontiance a commode in my living room ...and them saying no to mobility on strong meds go up all the side effects are terrible diarriah .nausea..fatigue giddiness.falling..fainting.. etc headaches going all the way to the TOPP...just aint fair all these cutbacks....ive worked 3Oyears paid my stamp and taxexs and get treated like im a begga.....etc etc moan moan groan.....

Hi Yes i have my carer coming with me the whole thing is a joke i know they are trying to clamp down on all the fakers but us genuine ones seem to be target all the time. sick to death of it all especially when you have written proof from doctors and consultants it seems it does not count for anything , Just added stress i feel so sick with worry , i have to pay for acupuncture as this was cut from budget last year if mine is not renewed i will not be able to afford to have this treatment to help with pain. its unbelivable that i get awarded it for life but they seem to think it can just stop, so unfair.

My fight will be i am a lot worse now and i have been told my prognoises is very poor.

Good luck rlupus with this. It is awful having the stress again. I too was awarded indefinite DLA and am about to return my PIP form. I have the PIP information booklet they sent in front of me and in it page 3 it mentions you do not need to send appointment cards/letters only supporting letters from professionals that care for you. So, I was wondering why they are now asking for this?

How long after sending your PIP form back has it taken them to get in touch with you? Also, I was wondering if you filled it in or did you get help from citizens advice?

It is stressing me out too. Definitely take someone with you, do not go alone.

Keep fighting it and do not give up. Good luck and let us know how it goes.

rlupus in reply to loopy-lou

Hi Loopy-lou

Your right it does say you do not have to send letters off but i had all ready kept all my eveidence so thought it would save time as they contact the GPS , the bit i don't get even though these were sent they are asking for me to provide this at the face to face meeting , a friend of mine had the same thing when she went there was no paper work just the same questions over an over again, it seems different areas do this differently

I am so ill at the moment due to al the added stress i am starting to loose the will to live there making it very hard for all us lupus patients i also have a multitude of other problems i.e. chronic obstructive airways disease, i am on nebuliseres 4 times a day twice through the night also home oxygen and take 29 pills a day, This has all been sent from GP as evidence but still need to be seen i also have bloods taken twice a week for life due to all the clots and PEs i have had and still get quite often , i also have a portacath inserted in to chest so they can gain access for blood samples as my vaines are rubbish , this year alone i have been admitted to hospital every other month, i have had a horrendous year and been told my prognoises is very poor.

sorry for the rant but so frustrated.

good luck with your will update when i get the out come xx

loopy-lou in reply to rlupus

Hi rlupus, You sound as if you are having a really dreadful time. Please take strength from this site. There are so many of us that have been awarded indefinite DLA and are having to go through this awful process. It is ridiculous as when you are ill you are ill. I feel like they are making it sound like there are two forms of being ill. It seems like being awarded indefinite counts for nothing. Please find the strength to fight this. You sound too ill to go out. Can you not request that they come to see you?

I think they ask the same questions again to see if you change your answer. Just keep saying the same thing. I have decided that if I am asked to go to a meeting on a bad day when I am unable to get dressed I will go in my pyjamas. If you feel very ill when you are there ask them to ring for an ambulance if need be. Take someone with you.

Have you had help with filling in the forms? Citizens advice will always help you always worth talking to them on the phone.

Good luck and let us know how you get on xx

rlupus in reply to loopy-lou

I did ask for a visit at home but was told no have to go as its in my local town , they really do not have a clue and half the people holding these face to face interviews no nothing about the illness.

absolute rubbish,

i will keep you updated,

keep well x

loopy-lou in reply to rlupus

That is still very bad. I know too well when you are feeling very ill you cannot leave the house. Wishing you lots and lots of luck x

Check out the Benifits and Work website their guides are brilliant. They do charge a small fee, but all the material is done by professionals

Have used them for both esa and DLA haven't had to have a medical so far

Good luck or and ask for the appointment to be recorded that way they if they do change the facts you can take the recording to the tribunal

rlupus in reply to tired18

Hi thanks for the reply i only ever had one home visit over 18 years ago when it went to tribunral and i won the DLA case ,but now its being taken away and replaced by PIP its different there not interested in what you can't do its what you can do and even with very limited mobility due to breathing its looking doubtful i will score enough points its so unfair i never asked for this dreadful illness, its so unfair that we have been through so much that we have to go through it all again after being awarded it for life,

But i will try and fight this all the way . I just can't see how or why it should be stopped when as already said awarded for life !!

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rlupus in reply to Hidden

Thats great news for you i hope mine goes okay but very stressed with it all , i can't hardly bend at the moment my back is giving me a lot of pain , and also my arms i can't even change the bedding i have to have my friends and family help ,

keep well x

Hi, you can ask them to conduct the medical at your home if it is causing you so much stress. They will just go through the same questions as were on the form A good point is when answering them to describe how you are on your worst days.

i guessed it will be the same question , at this present time I'm not well and very stressed but it seems some people are sailing through the process without any problems.

i will keep you updated when i get a decision.

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rlupus in reply to Hidden

Thanks for your reply

If your GP will write a letter stating it would be detrimental to your health to attend at centre they should give you a home assessment even if they have said no to start with. Worth a try as opposed to struggling there with how Ill you are.

Either way good luck and caring thoughts

Effie x

rlupus in reply to littleeffie

Thanks i do have a fantastic GP i will ask thanks

In my opinion, they have changed the name in order to change the rules. People awarded DLA indefinitely and permanently are now needing to re apply as theyve changed the goal posts by renaming it. Crafty.....

Thanks for your reply the whole new system is a joke . They should of just moved all the people who have been awarded life or indefinitely across . It's just more added stress and waste of resources with all the paperwork and tribunal cases ,I will definitely be fighting all the way I can't see how they can just take it all way when deterarting all the time.

Hi all, I have been reading and catching up on posts as I have not been on in a while do to being so ill. You do not need to send any of your appointment letters when you send of the forms...BUT I think you should this gives the person entering all your details before hand a idea of what appointment you have and what for and how many appointment you attend. As in consultants etc. I sent all mine in and the lady who did the home visit in my case was very lovely and when she visited I mentioned I had sent in all my appointment letters even though i was asked to do so. She said yes its a good idea to do so as it gives them a insight into your health before seeing you.

I had a great leaflet sent to me by Paul from Lupus Uk which really helps you get your head around the questions. In the new PIP its all about key words in how you word your answers.

Safely - Can you do the activity without causing danger to yourself or someone else?

o Well enough - For example, you may be able to make a meal, but you will not be able to eat it if it is undercooked.

o More than once - Can you repeat the activity as many times as you need to?

o In a reasonable time - Does it take you a lot longer to do the activity than it would take most people?

On every question use this information for example

Can I take Public transport : When I have a flare and a serousitus attack I can not use public transport because I lose consciousness because of the pain I need urgent medical assistant and I need morphine to be given to me which I carry. Because I can have sudden severe onset of my attacks with no warning and I become very confused and disorientated and lose the ability to remain consciousness and my heart rate drops as my organs start to struggle. I can not take public transport because I can not do this SAFELY, RELIABLY etc etc. if you use this key for every question and answer the reasons as is set out above for every question it should help you answer the questions.

On your medication page list all your medications and then list the side effects you may suffer from and how they make you feel, many of us forget how the medication effects us as we have got used to how we feel on them. Example I'm on morphine this makes me light headed makes me have slurred speech I can't focus and my blood pressure drops very fast and I feel as though i am not coherent when i have to take it.

do this for every medication and bare in mind the person you are writing to may have no clue about you illness so you have to sort of right a story about you with every detail the more detail the better it does not hurt to put it all down at the end of the day your telling them how it is warts and all, the nitty gritty of just how shitty it makes us feel. I am a self motivated person but I have really bad bouts of depression because of just how lupus makes me feel and the effects on my health and life. I have also felt that at one point my husband would be better of without me. But then is start to fight back again. I also put this down and explained exactly how i feel... I hope this helps you all to get the award thats needed. today is a better day 4 days in hospital and back home it get to a point even the consultant says yay day 4 in the Royal Glam and finally stopped vomiting yippee xxx sending you all hugs good luck. if you stuck and want to ask anything please feel free x happy to help

They are there to save money any way they can. When I had my appt. I took my carer with me and when I was having difficulty explaining I turned to ask her to help and then the PIP person shouted at me saying I was the one needing to talk and that my carer couldn't say anything. I needed my carer's help because I have difficulty remembering when I try to talk or explain stuff to an unfamiliar person, I needed help but I couldn't use her. I even had made notes to try to deal with it but it made me too nervous. The PIP person seems to ask questions that all sounded similar so I'm sure she was trying to trick me. Hopefully you'll get someone that has some compassion and won't be such a difficult one to deal with. My advice is to repeat over and over how difficult your day is and make sure you emphasize how much pain you are in with every task or step you take. If you need to use a toilet several times a night then make sure you say the maximum times +1 more rather than minimizing and saying you only have to go a few times. Nothing is awarded for being brave and trying to tough it out, in fact you are penalized if you tell them you try to do anything. I know this sounds a bit dramatic but I wasn't given the higher component because I didn't know how this system operated and told them I was trying to get some things done thinking this would sound better. Now I have to go back through it again in order to get what I need. Good luck

Hi rlupus, I recently replied to loopy-lou's thread on the DLA/pip change, as I've just been through it.

All I can say is try not to worry, the waiting for the appointment and the stress that brings is far bigger than the actual meeting. It really was ok.

The lighting wasn't very nice in the building, but the people were and it was exhausting, mine was begining of October, and it deffinately made me ill, I'm just taking my steroids back down now, but my lungs are still very poor (from the stress).

For me, it took about an hour and a half, she didn't make me do anything that I didn't feel I could and didn't try and trick me or judge me on personal opinion, there was no 'but you don't look sick!' which is what I was expecting.

Ultimately, I lost my mobility car, but that said, I've chosen not to ask them to look at it again, it was only by 2 points, (I got 10, needed 12) But I got 14 on daily living, so enhanced rate of daily living.

Its not ideal, but I was exhausted by the end of the process, mostly through my own worry and overthinking sending me into a bad flare. (chest infection topped it off)

Also, because I have had my motorbility car since 2011, I am entitled to the 'transitional package' with motorbility

They keep this quite quiet, but at the moment, when changing over, if you do lose your car, you are paid a one off payment of £2000 so you can stay mobile. (this is only for DLA/pip changeover) (it the money depends on the amount of time you have been with the scheme, i don't remember the limits, but £2000 is the max)

And you can now also still have an automatic blue badge if you have scored over 8 points. So for me, owning my own car and knowing that its mine and I can keep it without fear of losing it, more money in my pocket, while keeping my blue badge (probably the most important bit in my opinion) meant I didn't want them to look at it again.

I hope it all goes well for you :)

Don't worry, its not worth the flare :) x

Oh and for anyone getting the lower rate of mobility, you now get half price road tax. Whereas before there were no concessions for lower, only the free for higher rate.

I've not sussed out how to get it yet! But think its through the post office x

rlupus in reply to misseypunto

Thanks for the info thats whats worrying me i won't be able to run my car witch we all rely on with mobility problems at least half price tax would help i don't pay at present as i was awarded high right mobility and middle care .

guess will have to see the out come after monday x

misseypunto in reply to rlupus

Please, please try not to worrry too much, it sounds like you have a good GP who will support you. I used to get my road tax and my car, I had DLA higher rate mobility since 2006, (I wasn't diagnosed until 2011 with lupus, I also have primary lymphoedema, so first claimed due to that)

When they told me on the phone that I got lower mobility, I did panic and I cried and I felt like the world stopped for a car would go, will I end up housebound again, I was housbound previously for 10 months due to being too ill, and a blackness came on during that phone call.....

But you know what?, its not as important as we are as people who need to look after ourselves, cos we adapt. If anyone can adapt and find a silver lining, its got to be a lupus patient! :) We adapt and alter and cope every single day.

I'm so sorry you are feeling so poorly right now, but please don't let this swallow you up, turn your focus back to you. I know is easy to say, but having gone through it, its not worth the health risks that it brings.

Get it done, you never know, your money might go up! I didn't think I would get higher rate care, I previously got middle, but I did and its more money.

Be strong :) x

rlupus in reply to misseypunto

Thanks for you reply will keep you updated x

rlupus in reply to misseypunto

Thanks for your reply I'm absolutely dreading it , i have just come back from GP he can't belive the way we are all being treated , I'm so ill at the moment .


My money was stopped! I was awarded DLA for life now they are changing it to PIP and lost my motabilty car and careers award too!! Now they have stripped me from my car I can't get out and about! I'm fuming and do not know what to do??? The people that need it, don't get it and the people that do t need it get it! It's so wrong and how can they just strip it all away when Iv been awarded DLA for life!!?? Fuming lol x

I'm sorry LillyAlfie. Is this recent? have you started the appeal processes, or asked them to look at it again.

Have you returned your car yet? x

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