This is my thing...my GP has asked me to apply for Personal Independence Payment due to mobility issues. My problem is that with ESLD every day is different with multiple symptoms that truthfully, I do not fully understand. On a 'good' day I can get about...ish!? On bad days I spend lots of time indoors.
I have spent most of my savings looking after my son, getting cabs regularly and other stuff to cope with managing my mobility. I have worked hard all my life but TBH I am running out of money while living with this disease. I have found a way of earning from home but it is early days in doing so.
And to be really honest I don't like forms especially about my personal life and I only have a week to send it back....s**t!
Has anyone got any ideas?...All my best wishes....Mark 👣
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Mark there are groups on fb that will help you with filling the forms in also citizens advice although you may have left it a little to late, my only advice is to fill the form in as though you were having one of your worst days .Hope this helps in some way .
Hey Foxdud...thanks for getting back to me. Yeh that helps a lot because I haven't the foggiest! 🤔 I also have Endoscopy on the 23rd about potentially raised varices due to a clot in my leg. The varices were Grade 2 17 months ago. I could really do with the outcome of this when completing this form. I am going to phone them to ask for an extension I think and go from there. Or just fill the form out tomorrow. All the best....Mark
Hi I get mobility PiP, unfortunately the forms are written badly, all your answers have to be from your worst day. I got refused first time even though I was house bound, then my support worker did the form for me and I got full PIP which ment I could get a bus pass and winter weather payments. I am also on ESA and have to retire from work. I’ll help all I can. Good luck
Hey Cat-B...Thank you for getting back to me! A support worker. Where do you get one of those?They refused you when you were housebound?! That is awful and sorry that happened! I guess getting an extension to returning that form is in the hands of whoever I speak to...which is a gamble right? And writing about the worst days is key. Those days are currently hidden from everyone at the moment and I just tell them I am tired. The pains, dizziness, sleep problems, inability to walk far (especially in this heat 🥵) and other stuff that tbh I don't understand remains solely to myself.
And any s**t you are facing I'll help all I can too.....Mark
You need to get that form filled in, it takes forever to get a decision. The trick is always do the ver worst day and never ever tick sometimes ( they read sometimes as every day! It’s a ridiculous process but you have to play the game they invented! Use as much medical jargon as you can ( the people who process the forms have absolutely no medical training, and when it comes to the assessment, you can’t go to them! It takes longer for them to come to you, but the benefits are paid from the date you sign the form, so please make it your priority. Send the form back recorded delivery as even when I had proof that the form had been signed for they tried to tell me it hadn’t been received! Funnily enough when I gave them the name and time it was then found! Anyone would think it’s their own money! Good luck xx
Hi Cat, you know what? I am going to do it on Thursday when my son goes back to his mum's and I will do the recorded delivery thing because of my previous dealing with them two years ago...I nearly became homeless. This time I have to include my physical problems and my mental health condition in one form...s**t! And I don't want that getting lost in the post!
That’s great, if in doubt exaggeration is good lol, you have to sound nearly dead for the dim wits who process the forms lol, I can help with medical jargon. My support worker was from the community alcohol team ( I couldn’t contemplate AA, and I still believe there “ steps” are counter productive, I never would have made it to forgiveness lol. Your GP should no about your council’s support. I’ll be here if you need a hand on Thursday
Cat, you have done the AA thing right!? I have done it intermittently for 15 years and spent my life savings on 2 AA/12 step rehabs. S**t, sounds like a battery!Here I am now with this liver thing but sober and doing some great things for my son and myself. ..I am NOT Anti AA but its not for everyone. I have taken lots out of it and met some great people but this is my journey this time.
Keep going!!...Mark (and I may take you up on Thursday's offer as I may be pulling my hair out! And I ain't got much left!!🙃
No I never went to AA! I’m now in year 8, I always felt AA was dogmatic and I was recommended it so much, so in the end I said “ I was dragged up by evil nuns, end of” that shut them up lol . I hate to think what I would have said and done if I’d gone, my family begged me not too go lol. I have a wicked galic temper and can use my words lol. My local alcohol team were wonderful and they all laughed at the thought of me at an AA meeting! My support was good old common sense, if I had a drink ( which I did frequently in the first 6 months, it was ok draw a line and try again attitude, slowly the guilt stopped and I was in control not the drink!) I’m glad you are doing well and at last enjoying times with your son. Those benefits forms are a nightmare and repetitive so you feel like they are trying to catch you out ( they probably are lol)
Hi Cat, A wicked Galic temper....lol, like it! And dragged up by evil nuns! S**t you poor thing. I was sent to a Catholic school and I am not even Catholic.😁Apologies for my late reply btw as I have had a couple of tough days. I had to put off that form so I could get to the hospital and visit my mum in a care home. I was so exhausted and felt rough at the hospital the doctor asked me if I was drinking again. I am not going near the stuff!! But it angers me to be labelled with my past. So I have decided to have a go at that form tomorrow..and yeh they are a frickin nightmare. On a good note I am sober and liking my direction but that 'Liver thing' is like a battle most days.
Anyways...I hope everything is alright your end?....Mark xx
Good for you staying sober with so much going on. I used to feel I had alcoholic stamped on my forehead sometimes, but my consultant thinks I’m a bit scary for his junior doctors so I only see them when he’s around, it’s usually to teach them that patients have brains lol . I’m here if you need a hand with the wording ( you have to be at least twice as ill as a normal day) I told them it took me 2 hrs to chop a carrot as I kept having to sit down and rest! Good luck
I completely agree fella. I had my 6 monthly ultrasound the other day.....the sonographer,After making sure she had the right chap in the room said out loud......who has been wreckless with alcohol then....i couldn't believe what she had said....i just looked at her...and said I hadn't touched a drop in 3 years....again being labelled. I'm. not confident to start of with. After walking back to my car,I felt that small. as you rightly said being labelled for whats happened in the past. not fair or acceptable. chris
Watcha fella...I am really sorry to hear that and yeh the attitude is out there. For me as soon I walk out of the door... with neighbours, going to my local shops, hospitals, some family, some friends and Facebook?!...s**t!! Stigma is everywhere.Well done for three years my man!! You are doing so well and keep believing in yourself. This is a tough battle in so many ways.
Thanks fella....your so right...its 1 hell of a battle, in all sorts of ways. This forum has been so amazing, such alot of friendly and helpful folk....I really don't think I could have done it with out them,and the BLT nurses to explain things ..amazing!.sounds as though you have your hands full as well fella....keep going. 1 day at a time. My best Chris
Hi Cat..I am about a third through that form..ffs!..Erm, the medical jargon is important right?Well I am not decomp anymore but what can I say?..my body and mind ain't what it used to be! 🙃 I will mention HE..its not through the roof but its there. I live currently with post it notes...loads of them! Varices...I have Endoscopy on Tuesday. Blood thinning appointment in September. Chronic fatigue..yeh. mobility issues...all the time but some days more than others. Dizziness and sleep problems. I just need to crash it out and send this thing as it is doing my head in. I had a call yesterday from the Liver Trust about their campaign on Stigma. They have my backing! The woman strongly suggested phoning the British Liver Trust nursing team about this form and getting support with this liver thing. Coz I ain't. Self will and a cab firm who take me to hospital and dodging that salt!...I hope you are well...Mark
I know it’s a nightmare, don’t forget they are not medical people, I use end stage liver disease ( they are used to end stage renal disease, all dialysis patients have that diagnosis and they automatically get PIP) remember to only put down the very worst day you can remember, when you probably couldn’t do anything ( preparing food for example, it takes x long to chop a carrot, if in doubt double the number) walking ( you have to hold on to the furniture or walls and going outside you can’t do more then a few steps without having to stop and hold on to something or you need someone with you at all times outside ( they don’t assess that, but they ask you about it!) Double the time it takes to get washed and dressed! You need to think back to how you were when de compensated. It’s a good idea to get a friend to fill in some of the form as that shows another difficulty x
I got the CAB to do mine. Same story, I applied twice before a got turned down. Once the CAB lady had finished asking me questions about everything I could possibly have I felt quite unwell, lol. Then when it came time to renew I got the man at the housing association to do it.
A friend who knows about these things advises people always to appeal if they are unsuccessful - 80% get approved on appeal. As others have said, provide answers based on your worst day
Hi PIP is a minefield of an application. You have to fill the form in describing YOU on your worse day ever.
I have found this site benefitsandwork.co.uk a great help. If I have the address wrong just Google benefits and work.
Yes there is a joining fee of about £20 but that provides you with everything you need to fill in the forms and even help with appeals. They have templates and advice. You don't have to join if you don't want to as they still supply good advice but to get the best out of the site and help with your chances of your application being accepted I would suggest paying the annual fee.
DWP make it difficult to apply and they like to put obstacles in your way but if your gp is supporting you then at least you have them on your side and they can back up your claim. Make sure you have all the letters from your doctors along with their names and addresses because it all helps.
I will say it again.....be on your worse day ever when filling in the forms.
So yes apply. It is a benefit that can help bring in extra funds on a regular basis straight to your bank account 4 weekly.
Good luck and please check out the site for advice on applying.
Remember that website for tips and ideas and remember if you go for an assessment you have to be on a bad day then too and they are sneaky. If you can't park nearby get someone to drive you. You are being observed as soon as you walk through the door right through to when you leave. They may even have cameras outside so keep that in mind and also look out for the tricks like dropping something on the floor and waiting for you to react to pick it up. Like I said you are under scrutiny 100% of the time and DWP and their assessment teams do not play fair. Also make sure the session is recorded and if not tell them you will be on your phone. It is legal as long as you tell them. Have as much documented proof that you can lay your hands on...OK good luck xxxx
Hey! I claim pip for my Sphincter of oddi/pancreatic issues.On a good day I function on my meds. On a bad day I'm crippled. If I'm not vomiting then I'm laid up in bed barely able to stand.
If you're on Facebook, search Fightback. They have specialists to help you fill your form in.
Fill it in as your worst day! Citizens advice are there to help too. Good luck!
First of all call them and ask for an extension to the time. It's an arduous job but you've got to fill the forms in as if it's your worst days. They will ask you why you haven't completed the forms. Just explain one of your worst days and say that you are trying to find someone to help you.
I applied last year unsuccessful because I can walk 10 meters press a button on microwave and use toilet unaided and drove a automatic car took a year get back to me
I applied for PIP. In no way did I think I'd get it, but I did! On the form and in the assessment it's important to focus on your worst ever days. If you put down details or your GP and specialist they will write to them too. The lady who assessed me was really nice (I suspect it was because I was her first appointment on a Monday!) and just let me speak. They do ask specific questions and you do need to lay it on thick but at the end of the day you have a critical illness so you are entitled to that help. Good luck!
The replies here are excellent and cover pretty much everything. Remember this is not about your medical problem but how the problem affects you in everyday life. Concentrate on listing what you CANNOT do on your worst day and not what you can do, because they will pounce on every little positive. Also answer the questions carefully about how a certain action may affect you, eg you may sometimes be able to do something, but can you do it more than once in the day, or will doing it affect you in the following days, eg you can walk 15m but cannot do it again without pain and a long rest and could not repeat it and/or doing it causes you problems the following day. Also they work on the basis, can you do something within 3 times the amount of time it would take someone without a problem, eg if take someone without a problem 10mins to shower and dress, can you do it in 30mins. If you are on a short time frame to send back the forms use the reply envelope they sent but send it next day signed for. It will cost about £5 I think but at least the date received will be recorded. And don't worry if you can't get any medical records/letters etc now, you can send those later if needed. Last thing, when they arrange an assessment make sure they know you cannot travel other than by taxi and they will reimburse the cost. Good luck
Hi Wordesley...thank so much for your reply and I hope all is well for you! My delay in my response was due to 2 hospital visits this week and tbh it was a struggle even to getting the taxi there and back. The hospital is not local and it cost me loads. I did look at the bus stop but that was on 'a bad day' and there are many.I have to go back there next Tuesday for Endoscopy and then on the 8th of September to visit a Haemotologist on my birthday...🥳
Anyways thank you for your advice on that form. Its a tough one but I will reply to it and send my appointment documents and answer it on the view of my bad days....All my best....Mark
Enter everything on the form for your worst days as they are the days you need the help the most make the form read as bad as you can so you get everything they are willing to give you I know it sounds a bad way to go and might not be the way you like to do things but it is the only way to get them to treat you fair fill it out with everything as bad as possible
it is the way we done my wifes and the way most people do it you will not be in the wrong
Hi!! Those forms are a nightmare, call them asap and say you arent feeling well, they will give you an extension. Apparently they work on a system that is called 'MOST OF THE TIME' so don't tick sometimes as that's crossed of as its not 'most of the time'. Its not as much about your appointments or anything its what you cant do most of the time of too ill do do things (cooking, walking so far without having a rest, showering and getting dressed) Also if you need help to encourage you to go out or filling in forms. Well you do as youve asked on here! (don't take that personally i did at the start too). Photocopy the form youve filled in as youll need to repeat the same answers at the interview (usually by phone). Theyll just ask the same questions in a different way to try and trick you. ALSO ring your GP's and ask them to send you photocopies of your overall health screen and and dr's/hosiptal letters from the last couple of years. Put those in your form as evidence. You should get it then. A lot are turned down and get it the second time as they provided evidence. Hope this helps. You can also google the PIP SCORE SHEET which will give you an idea of the points to get it, not for cheating but what they need to know to get enough points so you know what to put down.
PS when they call and say its them they might ask 'how are you?' Dont say fine thanks.
😅 Youre ill. Good luck x
PPS remember to put in the last box that you may have had many more tests due ect (we all have) but because of covid you are waiting. They know that but remind them, they extended mine for an extra year because of it. Hope any of my rubbish helps
Hi Barneuboy...Sorry its been a while..I have had a shit few days but thanks for taking the time out to reply to my post. I just frickin hate forms but I am going to do it this weekend. And the stuff you wrote ain't rubbish, it is of great help...😉 And 'don't say fine thanks'!!..I like that!!
Hi there, I I see a lot of advice is doing it on your worse day, please do not do that, be honest.
You are opening yourself up to fraud, if you do, and believe me the DWP will prosecute.
There is a brilliant company called fightback4justice, they will do all the form filling, guide you through the process, do the MR if needs be and take you through the appeals process if it gets that far.
They did husbands claim 1st time from The MR stage and 2nd time from the start.
Both times we ended up at tribunal, and there was a PO from DWP there last time.
Both times the tribunal overturned the decision and awarded my husband.
Remember it’s not the diagnosis, but the way it affects you and daily living.
Don’t take it for granted that because you send lots of evidence you will be awarded, my husband had tonnes of it, and it was ignored, it also needs to be within the last 3 years.
Make copies of everything you send to DWP, they have a nasty habit of losing paper work, and ensure you send everything either recorded or special delivery.
You may have to fight them for it, but go for it, you have nothing to loose.
I’ve helped my husband with his, and also Did the switch from DLA to pip for my son, I was quite prepared to fight them for it, he turned into a she, and because he could catch a bus to work, he could cook a meal, not comparable in any way, shape or form.
After the assessment either face to face or by phone ask for a copy of the assessor’s report, and be prepared for them to lie, however it is relatively easy to pull apart and back up with evidence to do an MR. 85% of these decisions are not changed at this stage and will go to a full hearing.
The panel at tribunal are independent from DWP and are very nice people, you have a judge, a disabled person and a Dr.
Hi My partner has liver cirrhosis and I've had to apply for PIP for him. Citizen Advice helped me fill in the form (I'd never have been able to do it on my own, I was too upset and stressed) but it took a couple of weeks to get an appointment with them, they said with what we put down he should get the higher rate for living and mobility. If accepted it'll be paid from when you first phoned PIP to apply. It does take months to get through the whole process though. We applied march and a couple of weeks ago he got accepted for the standard rate living but nothing for mobility, I phoned them to ask them to reassess as he needs it! He's also got sciatica. So waiting again. It's so stressful as I've had to stay home to look after him. (I actually got sacked a couple of weeks after his diagnosis in march this year) when you get your appointment for your assessment don't make my fellas mistake and play down things, it's awful having to tell a complete stranger how ill you are but you need the help and you deserve it! Oh and make a copy of your form for your records too.
Hi just another thing about the forms you CAN'T manage 25 metres without becoming worn out and breathless and you're incontinent also 😆. I know it's serious but as people have said use your worst days and more. Best of luck ay! Ps I also went to AA for 14 years and it did the trick and I never did the steps, too much bs about them but I met some fine people. Haven't been for over 10 years now. Never believed I would be here after liver failure in 1988 and a total refusal for transplant which I didn't ask for. Peed my right off when George Best got one and abused it. Sorry for going on . Good luck.
Love the incontinence bit 🤣🤣 I actually put that in mine. I'm diabetic and I'm always peeing... sometimes when outdoors and you can't access a toilet it becomes really stressful! And I cant eat out of the house anymore for fear of bowel movement. It is embarrassing to write but when they got to that part In assessment I just burst out crying and they quickly moved on. I think the crying just came on because it was quite embarrassing to me to write and had my daughter in the assessment with me who I could tell looked horrified!
The form will make you feel ill, I think there’s a section for anything else and you need to put that it’s taken you so long to fill the form in because you can’t concentrate or focus and get exhausted very quickly. You can even put “ sorry it’s taken so long but it’s because you feel so ill all the time. Good luck, if I can think of anything else I’ll add it, I’m struggling to remember what else is on the form, but as long as you make everything bad enough you won’t have to fill it out again ( remember ESLF, end stage liver failure) and if you have any mental health issues put them down, as finally they have been made to give points for that! The form is depressing and anxiety making on it’s own, so that’s 2 lol x
Hi Cat....ESLF. Thanks for that!! And the form is depressing and anxiety provoking. I really do my best not to face my previous experiences and do my best to shrug off daily battles...and I am getting eye strain...should have gone to Specsavers!!😁You know what? There is always tomorrow. Thank you for your support...it is much appreciated! What I have learnt dealing with this disease is go with your gut feeling when you feel dodgy. So I am going to chill with some tunes....Mark x
Glad I could help a bit, yes always listen to your body, I spent most of yesterday sleeping ( I feel much better today lol) . Take care x
Hi I've only just seen this post. I really wish I had this advice sooner. I had a health assessment few weeks ago for ESA. I took my 16yr old daughter because she does help me alot daily. I'm the type who when outdoors at appointments tries to look presentable... I was told not to do my hair and make- up... my daughter put a braid in my hair 2 days prior and I just left it down. I slipped a maxi dress on to show I have tried but I had to wear sliders as my feet swell in shoes or trainers. I was in that appointment 15mins before the bloke ended the interview saying he didnt think I was fit for work. He had only discussed symptoms and how affects daily life on having long covid and liver cirrhosis. I was actually quite disappointed because he hadn't even talked about the other conditions. I had everything I wanted to say ready for his questions and that was that! I was told that although you really struggle with life in general- look like you try and want to be capable of living! The cameras are outside... and a security man who watches you and follows you a little way outside. Thing is I wasnt making up symptoms, but I guess you get the untruthful ones who say have bad back on crutches and once outside ditch the crutches. Funnily, my assessment centre is right next door to a wetherspoons.
I just received a pip letter that I have a telephone call on 8th sept as part of my assessment. I filled in my forms back in May as I struggled to teach a class of kids with my health and had to leave on health grounds. Thing is... alot has happened since filling in the form. I'm lucky I got my assessment via telephone call tbh as I really get anxious travelling far on buses and I cant bring my daughter with me as she starts college.
When I filled out my form i had to put things about support i have with daily tasks. My daughter has been a big part of helping around the house but shes attending college next week and I'm going to need help. So at the time I said I have a dog walker who comes daily to walk dogs as I can no longer walk them, I have a cleaner who comes every fortnight to do some cleaning I don't expect my daughter to do, my prescription gets delivered to me so i dont have to pick it up and i get my food shop ordered online and dropped off as i cant walk about supermarket for an hour doing a food shop. It's not that I cant do all these things, it takes time and like everyone says.... over exaggerate.
I also had written in the box towards the end that it took me 4 days to fill out this form as was too exhausting. I havent lied about any symptoms but I may have exaggerated my worst day. I'm actually down on gp records as clinically depressed from years ago but I don't take antidepressants because anyone depressed wouldn't fully accept it. I did miss my US appointment last month which pip dont know as yet but I have struggled attending appointments because I get anxious with a 2hr bus ride, very low mood and just feeling weak and exhausted. I have symptoms which I didn't when filled out the form.
I'll be honest... upto this year I've worked my ass off bringing up my kids. Never claimed before and even was physically struggling at work I never thought I'd get to a stage in life where I didnt work. I never thought about claiming till about 6mths ago.... I only really thought to put in a claim because my kids are growing up and have their own lives- I still need to provide for them while I try get better. I have bills to pay with no money coming in. It's not even alot of money but it helps keep a roof over our heads and food in the fridge. I'd rather go down this route and try to stand on my own 2 feet than accept my narcissistic ex back and him having a hold over me again.
I'm okay with my telephone call appointment... I feel confident- probably because my ESA appointment only lasted 15mins without actually over exaggerating. I've been studying psychology in my spare time ( takes longer to process things) but the subject has helped me alot with things like this.
P.S. I'm not too sure if this is true but I knew a woman who got pip for years. She broke her toe ( no surgery) but when seen her you'd swear she had broken her whole leg! She'd wrap her leg in bandages and get her mum push her into the appointment in a wheelchair. She was awarded mobility and dla. She said she'd told them she'd broken her leg, surgery the lot! 2yrs later she had major pain shooting through her whole leg and was prescribed painkillers and medication for nerve pain. It was all BS! She said they dont properly check up with the doctors. As long as you can give them some info which sounds true they just jot it down... end of.
My point: if you can give the pip some hospital letters along with your form with consultants details on they just file them and note down what you tell them. If your diagnosis has got better- fail to leave that bit out. If your medication has decreased- dont mention that bit. If your symptoms get better- who needs to know???
I know it sounds untruthful *but you suffer with brain fog... sometimes you don't know or understand things*
Hope any if this helps! If anyone has anything which may help I'm all ears...
Hi Hidden my love! Honestly its best not to exaggerate on your forms. When the b*stards try to turn you down itll make it harder for you to provide proof. I can tell you need all the help myself, we all can! You just be you and put in what you can & save copies. If you put anything wrong, youll be cornered. You my love dont need that, you need the money you so rightly deserve. I dont know but you might be over thinking things due to the worry of the bloomin scary forms it also shows you need help so same here. The forms make the poorly more poorly. I hope you feel better soon. xxxxx The whole system is a mess. Shouldnt a Dr just be ably to tick boxes on their screen nowadays? Wed never dread or commit suicide over the forms. ITS JUST ALL SO WRONG!
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I hope you feel better soon. xxxxx The whole system is a mess. Shouldnt a Dr just be ably to tick boxes on their screen nowadays? Wed never dread or commit suicide over the forms. ITS JUST ALL SO WRONG! 
Should I apply for PIP?
Pip award!
PIP 
Really starting to worry. :(
Transplant. Illness. Feeling Ok. 
