PIP : Hi everyone, I received a letter... - British Liver Trust

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Alley27 profile image
39 Replies

Hi everyone, I received a letter this morning informing me that I will be assessed at home next Tuesday

So I am bricking it. My home is not tidy because I can't do it, I am on a good day today but what if I am on a good day next week when they come.

Does anyone have any suggestions how to deal with these home visits. I would have preferred to go somewhere else for the assessment.

Thanks x

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Alley27 profile image
Alley27
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39 Replies
Rockefeller20 profile image
Rockefeller20

hi There, if you’re sick they won’t expect you to have a tidy house. You won’t know this person and after a few short questions you’ll never meet them again.

Don’t worry I’m now due another pip interview in September and even though I’ve had a transplant I won’t be giving it a second thought worrying what this stranger will think.

And I know they’ll be used to visiting all kinds of situations. And another thing if you happen to be having a good day when they visit I’d suggest revisiting your bad days in your mind and explain how bad you are.

You owe this person nothing. Hope this helps. Good luck

AyrshireK profile image
AyrshireK

First one is do not tidy up, leave your house exactly as it is if that is how it normally is due to your struggles (even if it is embarrassing to do so leave it as it is as this highlights your struggles). If they come in and find your house tidy they'll mark you down.

Don't make yourself tidy either, if you struggle with washing, bathing, getting dressed of a morning then don't make a special effort for them. People get marked down for being well groomed, tidily dressed, made up etc.

Just be careful of tricky questions - hope you've still got a copy of your paperwork, re-read it and make sure you stick to what you've writtten.

Even if you are on a good day don't fall into the first trap - don't tell them you are having a better day even if you are - a lady went into her PIP appeal before us, first question asked was how are you today? She answered fine (doh!! fell at the first hurdle).

If a question is asked that seems to require only a yes / no answer. i.e. Can you read? Can you ....? (loads of the questions are like this). Always remember if you answer Yes back it up with BUT "I have struggles with it, am slower at, it takes ages" etc. My hubby was asked if he can read? He took it as meaning was he literate - which he is and he can read, HOWEVER, he struggles to take in and process information, can't follow instructions etc. Remember to back stuff up with BUT.

We always went into the centre for assessment - at home there might be more pitfalls. I've heard of folks getting marked down because they bent to stroke a pet etc.

All the best with it,

Katie

alfredthegreat profile image
alfredthegreat

Hi Alley.

Don't worry for one minute about not being tidy because that will actually be in your favour.

If your home is sparkling and tidy and you get up and make them a cup of tea it will more than likely score against you.

We all know that we have some days better than others but I'm afraid if the assessors see a good day they seem to assume that this is the norm no matter what you tell them.

So just sit in a chair when they come and tell them the symptoms and problems of your worst ever day.

I saw on another post that they even check how you are dressed ( as if they don't realise that a family member or friend or carer could have helped you get ready! )

Try not to get too stressed while waiting for the assessment.

Hoping it all goes well for you.

Wishing you all the best.

Alf

Millie09 profile image
Millie09

Hi alley ,

Had my f2f review interview on Monday last week at my home, to be honest I was not that worried , as everything on my form was as it is at home, messy flat , not dressed , socks on and pyjamas, long uncut hair , and I have not had it cut in 2 yrs , my sister trims it for me , it's due to my chronic pain and fatigue.. just try and relax if you can , take your time answering any questions, as Katie said , they will try catch you out, luckily my aseesor seemed nice ,she even did not mind me declining any silly exercises.

I'm sure you will be fine , and even if they decide orher wise like me just appeal , I mean.. if any employer would employ me lol .. good luck!!! 👍.Linda

Alley27 profile image
Alley27 in reply to Millie09

Lol...I have no intention of looking posh, I never wear makeup unless I am going out to dinner with my fella, who does just about everything for me...my hair is short but I have a hair salon about 5 minutes away and use a taxi if I can't walk too far...

I also will decline any silly exercise moves. I am not physically visibly disabled but if she wants to put me through it and cause me pain she's out of luck. I can't walk, sit, stand, breathe without right upper quadrant pain...

I also have serious fatigue....my fella said that I should be in bed in my untidy bedroom and have a particularly bad day on Tuesday lol.

Take care of you x Allie

Millie09 profile image
Millie09 in reply to Alley27

Good for you!! .. just be your normal self , that's what I was , just as if it were a normal day for me

My hair is way past my boobies 🤣, and that's with a trim lol , but as I dont go anywhere 0nly to concerts with my sister I dont really worry so much .

I can relate to your pain and fatigue alley bless you, and dont do anything at this assesment that will cause any further either!!

Good luck and let us know how it went, thank you ..I will take care as best I can

Love Linda x

Alley27 profile image
Alley27 in reply to Millie09

Concerts...my job used to be close protection security working at concerts etc looking after the artists...I love my job but am not fit or well enough since this last flare in June, that caused a little more damage than expected xxx not to mention the change to medication..I am going to ask if I can go back on mercaptopurin...need to sort something out. My front door way is also cluttered..I'm not going to let my fella tidy round either..sod it...no more stressing about my untidy house lol.

I will be in my pjs or lounge suit, no tidy hair, mine is wavy so it sticks up all over the place on a morning. I will refuse the exercises due to being dizzy because my blood pressure is problematic..they don't know about this as it's new...started treatment in November so they will be told this. Gp thinks its portal vein hypertension, but needs confirmation from consultant...I also have new symptoms and only lactulose helps, so I think HE, ruled everything else out...

Either way I will try my best on Tuesday and I will appeal if I have to.

Take care x

Millie09 profile image
Millie09 in reply to Alley27

Wow, what a fantastic job to have! .you must tell me more 😁. I was manager of a travel agency, Thomson holidays now TUI ,used to love my job , have been so lucky to have travelled to many places ,but unfortunately at present I can not do what I would like 🙄.

Well I would not even contemplate tidying up, not for a pip assessment anyway , they need to see how you are on a daily basis anyway, I hope you get your correct mede sorted! I'm on lactose, I have to take it or I sure know if I ever forget 😬.. I have had several new diagnoses since 2017 , that was my first ever pip award, I have sent proof so I have no worries with that,

All we can do is go with the flow on the day of assessment, and yes ,like myself if needs I will appeal!

Take care alley x

Alley27 profile image
Alley27 in reply to Millie09

Can't tell you everything but i have done everything from working the front barrier of the stage to one to one with Pink and a few others.

I have worked at the brit awards, where rag n bone man had just come off the stage. Making his way to the back of 02 arena some idiot let a load of people through the barrier and the knocked me down. The next thing I felt was two huge hands getting hold of mine and helping me to my feet. It was the man himself, we had a lovely conversation.

I have looked after so many people artists included...stormzy was put in his place by little ils me lol..

In the last 3 years I think I have done around 3000 concerts, gigs, festivals, sports arenas and nightclub doors, its unbelievable.

I am so very good at my job, but I know I can't do it anymore according to specialist, and of course my body.

I am now almost 56 years old so probably would have had to finish soon, but not expected it to be this soon x

Take care.

Millie09 profile image
Millie09 in reply to Alley27

How wonderful! And to be lifted up by rag n bone man , brilliant, you really have had an amazing career, I know it's sad that you cant carry on with it but hey ! What great memories and stories to tell

I love doing meet and greet whenever possible, I just wished take that did one lol., and that's only because I've always liked Howard ,our next concert God willing is evanescence in may and I'm hoping to go to the Hollywood vampires to watch the lovely Johnny Depp in action .

We have to go with the flow these days dont we , day at a time, I can never tell how I'm going to be from one day to the next, all I know is my sleeping is either all or nothing!! So I'm basically always tired .

My next appt is end of may with my hepatologist but I'm on emergency watch for endoscopy if the pain I get with my acid reflux gets any worse .

Xx

Hi

I had my review on Tuesday, I had loads of good advice on here, everyone's great. I was advised,no make up etc, mine wasn't at home but in your case do not tidy up , make a brew. This was my second, I got enhanced on my first but they needed to go more in depth. As my Dad would have said they wanted to know the ins and outs of a ducks arse🤣 good luck,let me know how you get on please. If you can try and have someone with you. Take care Lynne

In addition to all the good advice, if you are having a better than usual day (what are we like, saying we have”good days” 🤣?) lie down on the sofa and enjoy it, relax so much in your nightie that’s you can barely raise your voice above a whisper because you know for sure that when the interview is over you will crash from exerting yourself if you try to be your best. It’s not deception or an act, it’s how we have to manage and conserve energy at times. My house is usually untidy. Often I don’t have the cognitive skills to know where to start to tidy it even if I had the energy. Sometimes I struggle to open the front door because I have left things there when coming home. Shoes, boots, bags, dog leads.I’ve lost a loaf of bread in the house this week....and it was delivered to my front door which is close to the kitchen in a tiny house!! I hope it goes well for you, please don’t worry about it x

Millie09 profile image
Millie09 in reply to

Absolutely so spot on fili ! 👍

Alley27 profile image
Alley27 in reply to

Yes I did crash for 2 hours after the assessment x

in reply to Alley27

No wonder! You had such a dreadful day in front of the assessor. Even if good for the assessor to see how bad things are it's human nature not to want anyone seeing us be sick? A problem for some of us on a better day could be not remembering the details of a bad day - I sort of know if an event will be too much in combination with other activities I must do but I'd be hard put to remember, to order, what a bad day is like in detail. I try not to think about what it would be like if I ever need to make a claim because reports of how difficult it is are legendary.

You are a survivor! Well done getting through it.

Alley27 profile image
Alley27 in reply to

Thank you fillistines...I had been a little bit off for a few days and as we all know, we get ups and downs with our condition. I just expected, knowing my luck, that I would be on a good day...it is what it is.

I am learning to cancel or decline offers from friends to go out and meet up. I just don't have the energy some days. It's not good in terms of friends and a social life, but I have found that the real friends stay.

I intend to go for a walk day from next week. A group of ladies meet up near my local library, and they then go walking. It's only local but its exercise...I also want to be able to get out and about a little more in general. I am considering either a mobility scooter or one of those Walker's with a seat and shopping basket...I have things that I want to get back into.

I currently have other issues and think possibly its HE. My head feels like it's in a bucket of water, I have headache and foggy thinking , plus my abdomen swells for no reason...

Its interesting that when I take lactulose, it helps it ease away, which is why I think its HE related. I have a phone appointment with my gp tomorrow and I need to discuss this plus the fact that I fall asleep anywhere which is worrying.

I am ok though.....I say with intention...we are all ok...we are here, alive breathing and surviving..

Take care xx

jacobsmum24 profile image
jacobsmum24

I cant give you any practical advice as I am still waiting for my first face to face assessment for ESA - 4th appointment cancelled today !

I can understand your trepidation though and think it is totally scandalous that we deliberately have to dress down and not look fragrant to get the help we need. I know there are a lot of dodgy claimants out there but surely a look at your medical records should be enough to prove that you deserve to receive PIP.

ThreeSmiles profile image
ThreeSmiles in reply to jacobsmum24

I totally totally agree with that mum! 👍

Millie09 profile image
Millie09 in reply to jacobsmum24

Omg ! 4th cancellation!! That's has to be awful!! Surely they cant put you through all the added stress, disgrace it is .😡

jacobsmum24 profile image
jacobsmum24 in reply to Millie09

I sent an email complaint and have had a reply saying the reason for cancellation is that they can't find my file. They are apparently searching all their offices in case it's been sent to the wrong place ! They also said that they had to keep making appointments despite this as I need to have an open appointment sitting on the system otherwise my case will be closed down. It's nuts 🥜🥜🥜

Millie09 profile image
Millie09 in reply to jacobsmum24

Crazy! .. 🤪and very frustrating!! .I really hope they sort something out very soon for you.

Cat-B profile image
Cat-B

Leave the house as is, you have to show how things are on your worst day, if you can’t do things on a bad day don’t do them for your meeting and exaggerate how hard things are, that sounds bad but you have to play their game! They are looking to find anything to not pay you. I learned the hard way, but now get PIP to pay for a cleaner etc. So you have to show them your worst day. Good luck x

Steak profile image
Steak

Like it's been said think of your worse day ever. I applied for it after transplant but didn't get any points. They asked how I managed after transplant and then how would I improve after that said I don't struggle like some people on her lucky in that respect . Hence why I didn't appeal . Hope it goes well and take advice already given x

unique4 profile image
unique4

I had my PIP assessment last year but at the centre. Because I was on a well day I went to the appointment by myself. I wish I had someone there with me as my case was difficult to explain because my illness has no name and is unique. Living with this for four years and not being able to hold down a part time job because of my health didn't qualify me for PIP. Lots of questions are asked about the questionnaire booklet you may have previously filled in. I do get confused at times with this illness so its a great idea for another person to speak up for you if you get a little confused or forgetful. Overall the nurse was pleasant. Hope it goes well!

hawksey profile image
hawksey

Hi,

I had an assesment a few weeks ago and had the same worries as you regarding good day/bad day. The Assessor was friendly and she understood exactly what I was going through with Acities/Neuropathy and Encepalopathy. She was obviously medically trained. As it happens that particular morning I was very confused and my balance was shot and could hardly get through a sentence before losing track of what I was trying to say. So, just another day in paradise! I had my daughter with me and I had to keep asking her what we were talking about! Was a refreshing meeting and I was impressed with her understanding of my condition.

Thought I'd share that and hope you have a goodun.

Cheers

Paul

Alley27 profile image
Alley27

Thanks guys some good advice here..I will not tidy up and I will leave a few more things around...my fella does a lot for me though including washing up and putting away..we will not do anything over the weekend. I was so worried but not now thanks.

My fella said that I should stay in bed and have a very bad day lol.

Take care everyone. X

J-K-L-M-N-O-P profile image
J-K-L-M-N-O-P

HI THERE,JUST JOINED THE TRUST SUN 19th AS I HAD A BLACKOUT SAT NIGHT, STRANGE MUST BE ALL THE NEGATIVENESS AND ANXCIETY GOING ON. YOU MENTIONED NOT BEING ABLE TO TIDY YOUR HOUSE, CAN I ASK WHY EXACTLY AND SURELY YOU HAVE SOMEONE TO GIVE YOU A HAND.

HARRY.

alfredthegreat profile image
alfredthegreat in reply to J-K-L-M-N-O-P

Hi JK.

Often when people are ill or in pain issues like a tidy house go on the backburner.

Alley wasn't really complaining about the untidy state she lives in at the moment she was just bothered that someone was going to call at her house and assess her for PIP and she was feeling a bit embarrassed about them seeing it.

Lets face it, most of us can live with a state of untidiness with no problem, but it bothers us when someone is going to call at the house and see it.

Hands up how many run around with a hoover and duster and do a quick tidy up when we are expecting visitors?

It's just in this case Alley is not well enough to do it.

Believe me the people that will do this kind of thing for you and stick with it are thin on the ground anyway.

Everybody will offer help after initial diagnosis, some just saying it, others doing it, but when an illness goes into long term, most helpers (I'm not saying all!) melt away.

Anyway if the PIP assessor were to arrive at her house and see everything neat and sparkling they may just think that she's not as ill or in as much pain as she is claiming.

So to get someone to come in and spruce things up might not be in Alley's favour.

Regards,

Alf.

J-K-L-M-N-O-P profile image
J-K-L-M-N-O-P in reply to alfredthegreat

SORRY FOR STICKING MY NOSE IN THERE, SOMETIMES I COME OUT SAYING SOMETHING STUPID, YES YOU'RE RIGHT WHAT YOU SAID, AT LEAST YOU SOUNDED LOGICAL, THANK YOU FOR STRAIGHTENING ME OUT.

HARRY.

alfredthegreat profile image
alfredthegreat in reply to J-K-L-M-N-O-P

No worries Harry :-) :-)

ThreeSmiles profile image
ThreeSmiles in reply to alfredthegreat

So right freddy on all counts 👍

Millie09 profile image
Millie09

Hi alley , wishing you all the best for your pip assessment 🤞, let us know how it goes tomorrow xx

Dogbot profile image
Dogbot

A home visit is not a bad place they want to know what you can do so if your home is not as clean and tidy as you want than you can tell them your frustrations and if it’s your first visit you my fail the assessment but don’t worry just go through the next step, it can be a frustrating time but keep at it and if you can get citizen Advice to help I found them very good.

So good luck 👍

Hi Alley

I cannot add to the amazing messages you've received above but do wish you well on the day !

Trish

Alley27 profile image
Alley27

Hi everyone and thank you so much for the advice. All so very helpful today. My assessor was actually quite nice and helpful in fact. I know that you don't get many like this but he was ok.

He was supposed to come between 11 and 1 today but, the previous one was cancelled so he called me and asked if he could call earlier. I agreed because I thought if he comes now and sees me as soon as I get out of bed, you can't fault it.

My fella had to get me up early, and quickly which meant that I was unsteady on my feet because of the stiffness that comes with the arthritis, my head was not right because my brain fog is worse when I wake up.

When the man got to my door, Andy had just managed to get me down stairs Andy opened the front door and I felt so nauseous this morning I actually threw up in front of the assessor. He asked Andy how often does this happen, and he replied that he had lost count. It's a good job I have a bin by my front door as most of it went in there.

The assessor then asked how I was today I told him what with the nausea, chucking up, pain, brain fog, aches and pains it was just another beautiful day in the paradise of autoimmune liver disease. He said hes glad it hasn't affected my personality...I said you need a personality with this or you would cry your eyes pit and shut yourself away.

Anyway he was actually nice. He was a liver nurse by trade...lucky me...he had some knowledge of what a minefield we live in with these conditions.

I woke up with a WTF day because I was pulled out of sleep and rushed round...so nothing that happened here today could be faked.

I now have to wait and see ...I hope to qualify but if they refuse, I will appeal.

I will keep you updated xx

in reply to Alley27

Sicko mode -

That’s just all he know, he don’t know nothin’ else

I tried to show ’em, yeah

I tried to show ’em, yeah, yeah

Yeah, yeah, yeah. 🤮🤞👍

ThreeSmiles profile image
ThreeSmiles in reply to Alley27

Pleased that you got a good Assessor Alley 👍.

🤞🤞 for a good result as well.

Miles

Millie09 profile image
Millie09 in reply to Alley27

Hi alley , aww I'm so pleased that things went well, and a liver nurse !! I dont know what I had lol ,it was a woman, well I say a woman but to me she was a young girl, seemed ok and was not with me long, maybe half hour .. bless you.. being sick, but that's how you are alley , and I say in a good way he was able to see , not that its nice for you each day 😟, I heard by txt from DWP that my written assessment had been recieved so now its just waiting for the brown envelope .take care hun x

Eurotrash profile image
Eurotrash

Hello there!

I get so angry when I read some of the comments. It's so sad that people can't tidy their house a bit and make themselves look presentable for visitors.

It's an outrage that people are penalised for such menial things as not all days are the same and also people might help you when you have visitors.

The fact that people with obvious disabilities certified by doctors get welfare taken away is a disgrace.

My heart goes out to all those who have fallen to the trap of a system that should be there with the intention to help, not have money taken away for the pettiest excuse.

They're not even doctors, for heaven's sake!

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