hi, my partner has decompensated cirrhosis and on transplant list. He has a lot of aches and pains, cannot walk long distances and struggles to get up the stairs. We haven't claimed anything but there is absolutely no way he could work right now. Has anyone successfully claimed - what kind of things will they be looking for/asking.
We don't qualify for anything else regarding benefits
Thanks
Absolutely do apply for PIP, it's not means tested and is designed to cover the additional costs that having a disability/long term health condition brings.
It can be a bit of a battle to claim BUT is possible. It looks at the things you struggle with on a daily basis, plus the help someone needs with mobility. There are a number of 'descriptors' - my hubby gets enhanced daily living scoring in many of the descriptor areas due to fatigue & cognitive difficulties due to HE, he can't to cook a meal (from scratch - would be dangerous in the kitchen), difficulty following instructions (verbal & written), cognitive function affects ability to communcate, needs help at appointments, with finances, paperwork etc. He is slower at doing some things - getting dressed, getting prepared in a morning, difficulty socializing due to fatigue, urgent toilet need etc. etc. He gets basic rate mobility based on the fact he can't make a journey unsupported.
You'll need to evidence hubbies situation so see if his consultant, t/p team will write you letters to support by describing his health and limitations.
You can get help with the form filling from Citizens Advice if the operate in your area and I really recommend the small cost to join the Benefits and Work website who have member guides to take you step by step through the process including how to fill in the forms with enough appropriate detail to hit the 'buzz words' to hopefully secure sufficient points. benefitsandwork.co.uk
My hubby was just about to be listed for t/p when he had his first face to face and scored zero points, local council welfare rights team supported our appeal and at tribunal hubby got enhanced daily living. Award only lasted a further year cos it was a 3 year award backdated to date of claim (took 2 years to process at that time).
On renewal application he had a much nicer f-2-f with nurse adding more points cos she saw how slow hubby was even taking off his coat. He got the enhanced daily living and basic mobility after that. Since then it's been renewed on paper basis with me completing forms, sending medical reports plus a supporting letter from hubbies consultant. His award has now been extended to 2027.
I wish you well with it. Once he's got an award see if you qualify for Carers Allowance - depends on your work hours and income though. CAB can help work out that you are applying for all the help you can.
Katie
thank you so much x
I just edited my post to describe some of the areas where hubby gets points. If you need any help when it comes to filling in the form i'll be happy to ping you over examples of my answers on hubbies forms because they are obviously scoring the points now so I just do them the same way each time. Give plenty of information such as detailing the Hepatic Encephalopathy. There is a lot of help on the benefits and work site because it's not about being able to do something once it's about if you can do it as often as needed, safely and in a reasonable time. If it takes someone longer to get dressed than the normal healthy person you can score points.
It's hellish that someone so obviously poorly has to jump through such hoops, it's stressful enough. It takes me a full day to complete hubbies paperwork each time. Then I was practically called a liar by DWP and PIP assessor (at first application) the face to face report was lies from start to finish and she even accused us of doctoring hospital paperwork or photocopying letter heads onto fake letters. She didn't want me in the room when hubby was assessed and never let me support him, the tribunal soon overturned all she'd written.
Second time round the nurse couldn't have been nicer and like I say she saw hubby taking off his coat and hanging it up (so sloooooow), she actually carried out cognitive function tests which the first one hadn't done - spelling WORLD backwards (hubby couldn't) and going from 100 taking 3 off each time (hubby couldn't do that either).
All subsequent applications been decided on paper.
Best wishes, just ask when you are filling forms in if you need an idea of the types of answers I submitted ............. I also put an additional 'essay' in describing in my words where hubby struggles day, his typical day and all the things I help him with.
Katie
thank you - my partner doesn't have HE, thankfully, but struggles we terrible aches and pains, hard to walk, climb stairs etc. He also gets sudden energy dips where he almost passes out so is scared to go out alone. I am so grateful for your advice, you have been so helpful
There was a time, (some years ago) when the QE Hospital Birmingham used to employ a benefits clerk/person. They would help with making a claim and sort out all benefits a person could be entitled to.
Sadly due to costs, this post was done away with. I think the hospital charity should help fund such a post.
I have just been awarded the standard payment of daily living and mobility. To be honest, the hospital put me in touch with a welfare officer. Think it was CAB. If it wasn’t for the advice and assistance he gave me, I wouldn’t have completed the claim. It’s extremely stressful filling out the forms, think there’s over 40 pages to complete!!! But I realised I have been unwell for years and just tried to cope and carry on the best I could, (I was diagnosed with cirrhosis over 10 years ago). Definitely apply and the lovely Katie has offered her support, which is so kind of her. Speak to your Hubbys nurses at the hospital too. Good luck.
Rooting for you, applied for the forms 2 months ago, finally got an SMS they are arriving in 10 days. Definitely going to need some help filling them in.
wow the FORMS took 2 months to arrive!? That's crazy. It sounds as though there is lots of help out there in terms of filling the forms in. Good luck to you too 
Hi, definitely contact Citizens Advice. Do it now, even before you’ve got the forms because it can take a while to speak to an adviser. You may find there are fringe benefits you can get once you’ve got PIP that you don’t know about.
The PIP forms are difficult to complete emotionally. We didnt do it for my husband but have completed them for other family members. I’d recommend as previously suggested using the excellent charity website benefitsandwork.co.uk
They have a very comprehensive manual, give suggested answers for different conditions. It explains the system and what you need to get across on the form. So one example -things should be done in a reasonable amount of time so if it takes a lot longer for someone to do an activity, which it would take another person without the condition a much shorter time to do then you get points. You might want to look at if you can get carers allowance for yourself. Good luck
I am in the middle of renewing my PIP. My Award ends next August 2023 but when I spoke to them on the phone, apparently they had caught up with the back log hence it has to be in by 1st November. I started filling it in about 2 weeks ago. Because I’m under 3 hospitals, finding all the letters is a nightmare. Good luck.
For your renewal don't assume the person reading it has any prior knowledge about you. If you've got the shortened form with the same, no change or worse tick boxes still fill in a full answer with detail of your condition and why it limits you. Ideally you want to use details from your previous application (hope you kept a copy). If you need more space to write than they provide use additional paper and label each sheet with name and NI number. I put continued on addition sheets at the bottom of their boxes and put question (number) continued on the additional sheets of paper.
As regards hospital paperwork get a ring binder or paper files - I have lever arch file for hubbies with partitions for GP Stuff, Local Consultant Stuff and Edinburgh stuff. I put original reports and letters in there a only take photocopied appt. letters to hospital.
Again benefits and work website guides are great help.
Best wishes
Katie
Hi Katie
I've spoken to them twice as I wasn't quite sure what to do. On both occasions, they looked up my previous claims and told me not to put all the original information in as they had copies of everything (I can't even remember what I gave them as I was so ill back then). They only want to know any changes, any operations etc since then which I have all the letters now (I'm so much slower than before and did get into a muddle as I have so many letters which are filed in 2 separate folders except the Birmingham letters which are all online. I've now made copies.
The liver side is fine (fingers cross as its 2.5 years now since my transplant) its all the other stuff that hasn't changed but got worse ie Eyes and Glaucoma, severe bone loss, adrenaline loss, cannot walk unaided etc. (All down to some of the drugs but they are a necessity).
This new form is different from the last two. I do remember a tick box one. I have a copy of my other renewal - I recognise my hand writing but I don't remember filling it in!
I have many things to add and CAB are helping me. Funnily, the first lady I spoke to asked if I wanted more time and I said no, I wouldn't need it. I ended up calling back last week and they have given me an extension as it is quite overwhelming filling in each box and I can only concentrate for a certain amount of time then the shutters come down. My aim is to send it off Thursday, special delivery so it gets there. Thanks for your advice.
CK
Fair dohs. Glad you are getting help with it from CAB. It's a nightmare to go through especially when you genuinely arn't well.
Good luck with the renewal, hope it goes well.
Katie
Thank you. I just want to send it off and hopefully relax after. I didn't think it would be as stressful but it is and re reading through my letters struck me that yep, I will never be my old self again physically. However, I'm here and made it to my 60th birthday yesterday! Will let you know what the outcome is.
CK
can he apply for employment support allowance, I got that when transplant team said I was medically unfit to work. It’s not means tested and you can claim for PIP as well. I tried but I was deemed well, so it was declined.
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