So PIP letter back but they have appointed assessor to come to our home.
This is stressing me out no end. When my hubs has good days be can be fine. That said he is just out of hospital today after an episode of HE (thanks for the advice Richard 64 and AyrshireKate)
Not sure how to handle this at all social worker says we should get full allowance but he can walk about with his stick and can boil a kettle (just) and make a sandwich but on his bad days he might not even get out of bed.
Will the assessor realise this or is it black and white based on what they see on the day.
Out of work for 10 months now and still in decompensated stage. Sick pay now stopped and he was paid 0.05p this month. Things are becoming so tough. No sign of universal credit award yet either. This is since January.
Sorry I know talking about money is vile....but necessary.
Annie
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I haven't experienced a home visit for PIP, both of hubbies face-to-face assessments were done in an ATOS centre. However, there are lots of pitfalls and things to watch out for.
On the day of the visit I wouldn't encourage hubby to do anything special, if he's tired that day and he's in his pj's leave him that way, don't shave or make any attempts to be smart as that is an immediate tell tale how poorly he is. Don't fall into the trap of a question like "How are you today?" Don't down play anything or say "Not too bad today!" He feels groggy, tired, fatigued, ill.
We had one nightmare assessment and one great one but it's hard to read on the day - even a seemingly supportive assessor can be writing down lies.
Just 'cos hubby can boil a kettle or prepare a sandwich, he can't do this everyday and the gauge is can you do it as often as required, regularly and safely.
Watch out for closed questions with yes or no answers - don't just say yes or no. Remember the word BUT. I can do that BUT.
Sit in with him.
Maybe keep a diary over the days/weeks leading up to assessment noting any further hospitalizations. Serious HE days etc. etc. You should copy any/all discharge notes from hospital and make sure these are added to the evidence given to the assessor on the day - anything that they haven't yet had to prove his hospitalizations etc.
They will ask about all the descriptors on the form so hopefully you've kept a copy and can remind yourselves of the answers you wrote. They usually ask about medications being taken, a typical day, will possibly carry out a cognition test - spell the word WORLD backwards and countdown from 100 in 7's. Neither of which my hubby could do.
My hubby can walk fine but he got basic rate mobility based on his inability to make a journey unaided - we talked about times when he has fallen asleep on journeys, can't figure out timetables and routes and even gets lost and befuddled in hospital when we have to go to different outpatients clinics.
If you want to ping me a PM with your email I can send you a good guide for PIP and how the assessment works.
It's a horrid situation that we have to fight for these benefits when our other halves are so obviously poorly.
Wow, Katie, what good advice. So many of you have written about how difficult these assessments are. I don’t know if it is the same in the US, but I would imagine so. Sorry to all who have to go through this and best of luck when the assessments do occur. 🌺
I had my assessment four weeks ago at home (my first one was cancelled an hour before they were due to arrive) she was a paramedic so I don't know how much she'd know about cirrhosis. My sister was with me and added a couple of things I'd forgotten. Typically that day my walking was better than it had been for weeks. She asked me to do some arm movements which I did apart from reaching behind my head as it is really painful. She asked me about cooking and cleaning which I told her my husband does it. She asked me about hobbies so I told her that although I was a prolific reader I can't concentrate now and use audio books and Have to constantly rewind as I've forgotten the story so far. I told her that my husband sometimes takes me to an out of town M&S where I use a scooter. On the report I got back it said that I go shopping with my family! She'd written that I appeared alert, pain free, kept eye contact and had no problem getting my driving licence out of my purse. There were several other "omissions" or down right lies. I have been awarded standard care which I'm quite happy with but 0 points for mobility. I have requested a mandatory reconsideration and written to them about the "errors" in the report. Apparently it takes about 12 weeks for a reconsideration. I got the award 24 days after my assessment which I think was quite quick. It was also backdated to January when I applied.
Concentrate on the bad days and answer all the questions from that perspective. Spare no details about the anxiety. Good luck and do not trust them at all. I am at appeal stage and have had a transplant.
Talking about money is absolutely fine, we all have bills to pay and they do not stop coming because you are ill.
Have you been in contact with welfare rights, they can be really helpful, my friend ,was advised to fill all forms in as though it was a really dad day. people who do the assesment try to trick you. my friend was asked to stand (he was in a wheelchair) he tried with the help of his carer, but couldn't due to pain. when he received his report he scored 0, the assessor said he could walk 200 meters. Hes written to minister of works & pensions but go no answer.
There’s a lot of history and advice being offered and hopefully it has helped. So I won’t go into all that, that said, I have a positive attitude and I would always underplay how bad things were/are and try to focus on the well I can do this, that and the other. Then the nurses pulled me said and said something so obvious but I totally missed it.
Remember your talking about what you can/can’t do on your WORST day, not your bet day. Sorry for the caps but couldn’t underline.
Thank you all so much this has bern so helpful yet the prospect is so daunting too. I am trying to tell myself these people are human and not my superior in any way and they still pump and poo ( trying the take the authoritative out of it) lol
Hello Annie, I think you've guessed from my previous post on this subject, that this benefit payment is so unjust and unfair. Some people get it outright, while others have to fight tooth and nail.
I had a home visit assessment once. This was carried out by a retired nurse working for "Capita" (Capita, are a private company, who are hired on behalf of the government and come under the Department for Work and Pensions (DWP). The ex-nurse was rather cold and even said that she hated doing her job, as she felt it to be so cold and heartless. Sadly, like so many others, my claim was turned down. Hindsight is a wonderful thing, and I only wish I'd continued to pursue this claim right up to the appeal stage.
I personally believe that all liver disease should be awarded PIP as a matter of course, automatically qualifying for at least 6-months. But sadly each case is judge on it's own merits and some have to fight and even go to tribunals. This is so unfair, and is a national disgrace: independent.co.uk/news/uk/p...
I would speak to your local citizens advice, before you have this in house assessment, so you know what questions to answer. Don't offer too much information, but just answer the best you can. If I was you, I would point out that because your husbands mood can change all of a sudden, he's in need of constant supervision, so he doesn't endanger himself or others. You as his career, should qualify for the careers allowance part too. Because HE is a mind confusing condition, I would emphasis this strongly. I've mentioned this before, but people have been know to drive down the motorway on the wrong side of the road. Even making a cup of tea, which we consider a normal action, could be so dangerous. Filling up an electric kettle, but the putting in onto a gas ring and lighting the gas. This may seem silly, but this is the sort of mental issues that they need to know about. Please speak to citizens advice, and if your claim isn't successful, then I would approach, your local Welfare Rights group. Just google the name of your city or town followed by Welfare Rights.
I hope some of this helps. Good luck and please let us know how you get on.
You are spot on Richard my h has flooded the bathroom so many times my kitchen ceiling came down. Since he came out of hospital last night he has not got out of bed other than a toilet visit. It's such an unpredictable disease he can seem as if there is nothing there one day and the next day he looks so I'll.
Thank you for your time and advice you are very kind
You are more than welcome dear Annie. What you are doing is just wonderful, you are one of these special careers that have buckets of love and caring inside you. My heart goes out to you.
Is your hubby taking medication for this condition and have they told you what the long term prognosis is?
They won't be pressed on prognosis. I don't even know whats ahead to be honest . I just wake up and breathe and see what the day brings. My only motto is ' Dont look back as you cant see where you are going'. My children are my strength x
Having experienced this always say ur worst case so that you get an accurate measure of abilities. Think about each section and say it as it is. I had help from help the aged who supported me in the application and that was really helpful. On the day they visit give an honest account of how difficult your husband finds things . They will probably ask him but I would suggest you also give an account as his career you have the true picture and your husband may want to look on the bright side understandably. Good luck . The assessors ate nice people and I hope that eases your mind. I too found it extremely stressful. Can your husband claim ESA as he can’t work. It’s not a huge amount of money but it may help you x
Hi i have just completed the pip form and what a form to complete. When the social worker at jimmys went through it her advice was 2 concentrate on all the bad days. Don't say oh yes I can walk 2 miles when u can't. Also let the assessment person come to u. I think the problem is we r used to doing things for our self and feel proud . The fatigue makes doing what are normal things 2 other people worse for us. Concentrate on the bad days when filling form in. Good luck x
Hello Annie so sorry to hear about your husband. I was recently diagnosed with Liver Cirrhosis and have been through all the benefit rollercoaster myself.
I was assessed at home for PIP and was given the lower rate witch I have contested. my symptoms sound similar to you husbands. just remember the assessor is not your friend and don't act like they are. this sounds bad but one of the reasons I was given the low rate was because I seemed happy cheerful
Always go by your worst day, its like a mind game to be honest but that's how it is I'm afraid. Don't say he can make a brew and a sandwich on some days. otherwise you will loose points. ONLY go on his worst days and do not elaborate on anything. This sounds terrible I know but your not lying are you.
Ask for a home visit too if he is really sick that's what I did. Universal Credit is a bloody nightmare and takes ages to sort out. they will need to assess your husband too about his health in time and its the same procedure as PiP .
There is no shame talking about money either as this is a cause of stress and can make him even more ill. All the best and I'm here if you need any more advice.
Thank you and again you are so right. We have to have our GP intervene as my H is so low he talked about negative suicidal thoughts and his mood is low I am not sure he could take a smile at the minute however when the assessor comes in just over a week it could be different. It is an awful unpredicabtle disease and has caused so very difficult times and he has been luck to still be alive on 3 occasions where I have been called in to say he has deteriorated.
I really feel for you both.having been through the same.he has to stay positive as hard as it is sometimes.i took one day at a time.you’ll get through this I’m sure as there are so many here who have been through this disease and come out the other side.all the best. Paul.
The finances are a real issue. We are in the states and my hubby has been on disability through work. The money is getting smaller and I’m not sure when it will stop. I’ve been looking for a job but have not succeeded. I stopped working to take care of my father in law. He is still with us but I have to go back to work now. I worry about both of them needing care. Katie, great advise. I will share with my hubby. I hope everyone the best.
Linda
Hi
Good advice from everyone on here, they're great. When I went for my assessment I was warned they will ask you a question and then further down they will ask the same question in a different way and yes, it did happen to me but I was ready, ha ha!! I was awarded standard on both so I was was quite happy with that. My next one will be next year. I feel so much worse now. I really hope you are awarded what you deserve. Love and hugs Lynne xxxx
I had a stroke last year, paralysed the left side of my body, in addition to having liver cirrhosis and a number of other conditions. I scored nil points on my PIP assessment and even took it to Tribunal and lost and still scored nil points. ATOS lied, surprise, DWP assessor lied and Tribunal were unhelpful, you really need representation, someone to speak on your behalf.. I proven the lies, inaccuracies etc. and they still tried to tell me the decision was correct. Laughable, how do you make an original decision correct when you are evaluating using someone's else's file. I don't have endocrine disease, I have liver cirrhosis, big difference. Last year I was paralysed down the left side of my bodyt, but they left this out of the assessment and told me this was new information and not in the original assessment? All the hospital evidence etc. was deemed as being after the fact and not in the original application, but it merely supported my conditions, off course ATOS should have requested this information, but deliberately left out anything that would support or prove my case. I was told Tribunal would be helpful and understanding, they were not, they were hostile, and biased. Really would have helped to take someone along with me to the Tribunal to speak for me. In the orignal assessment, hospital letters were useful, GP was not, after she wrote a letter for me to summarise my conditions, she got half the information wrong and told them that my liver cirrhosis is curable, it's not! She then wrote a report to ATOS which contradicted all of the medical evidence and letters from the hospital. I only found out about this when I took the matter to Tribunal. (Sadly this is what living in a Tory area does for you). Despite saying I had difficulty walking, doh, in a different section she told them I couldrun for 50 minutes on a dreadmill????Tribunal relied on ATOS "nurse" and told me that all of the evidence I had gathered was new evidence claiming it was not in my original application....
It seems to me that your fate is in the hands of the assessor. They can omit things, lie about other things and that's what the decision maker uses to determine our fate. About six years ago I was reassessed for incapacity benefit as it was at that time. I was denied it and sent "my" report back... Only it wasn't my report. It contained someone else's medical history which included personal mental health problems. I thought that this was completely unprofessional but didn't even get an apology when I rang the dwp to tell them and as who had my report. They said they hadn't sent it to the person who's report I had, but who knows. I had to go to tribunal and was awarded my incapacity benefit for a minimum of of four years and this was mainly due to the lies my assessor had written. I don't know why my assessment was done at my home as I only stipulated that it was carried out nearby. Your husband sounds as though he should be receiving higher rate pip to me, I hope you get the right decision.
Yes, I totally agree, he should be getting the enhanced rate. Take care. Love and hugs Lynne xxxx
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Advice after all else is failing
Rifaxamin?
Update from a worried mom.
still decompensated after 5 months any hope? 
