Hi I am 27 female and I am diagnosed with end stage (stage 5) decompensated chronic liver cirrhosis and am hoping for a transplant ASAP. I haven’t thought about claiming benefits as I just kept presuming I’d get better enough to go back to work although I am much better the doctor has said to me that the severity of the scarring to my liver would mean he would not advise me to work for the foreseeable future and he would be deeming me as Unfit long term. He advised me to apply for universal credit and they advised me to also claim for pip. I have put a claim in for both have had my interview for universal credit and am awaiting payment. And awaiting a letter from pip. He has also said I should apply for backpay as I have been far too ill to have been worrying about money and had a long inpatient stay almost 4 months when I was first diagnosed last year. Anyway long story short I’m pretty gutted about not being able to go back to work (believe it or not) and I am pretty sure I am entitled to both benefits. I just wondered if anyone has applied for back pay and what sort of proof would I need? I have lots of appointment letters discharge summary Drs notes everything just could do with some help from someone who has had a similar situation any advice appreciated. Thank you.
Help with universal credit and pip - British Liver Trust
Help with universal credit and pip
Sorry but I can’t help with that but what is stage 5? I’ve never heard of it? It only goes up to stage 4. Also, are you compensated or decompensated? Also I think pip goes on how you are now and not how you were. I’m not in the UK now so I can’t really comment about pip.
Cheers,
Brett
Sorry I must have been rushing I know there is only 4 stages it’s stage 4 that’s what I meant, end stage my doctor calls it and yes decompensated. I’m obviously more well that I was a couple of months back but I am still in a lot of pain constantly I just try and deal with it and get on with it as much as I can. Hopefully I’ll get what I’m entitled to I genuinely am not a scrounger and would jump at the chance to go back to my job. It is what it is I guess. One day at a time. Thanks anyway
Get what you are entitled to. You may only receive backdated money from date of claim (check welfare rights in your area) I'm sorry you are so ill at present but do not feel guilty for getting money you are due because of illness. I hope you get new liver soon, so you get relief and quality of life.
This is a little ironic, but only this morning I have posted up online on a Facebook site for, "People who had liver transplants in the UK" and answered to this very subject. I should point out though that these are my own personal observations, and the views expressed are purely those of my own.
"This sadly is a very contentious issue, All applications are turned down as a matter of course. You then have to challenge the decision. Each decision is made on it's own merits. But it is totally unfair. Some people have been successful others (like myself) just give up at the first hurdle and just don't bother. I firmly believe that every liver transplantees should be awarded PIP for at least the first 12-months as you will be too weak and the body needs time to fully recover from this major surgery. But it's going to be a fight. I honestly believe that if we all had transplants, and if we all applied for PIP, if some were granted and some were turned down than I feel this is a form of victimisation and in it's self should be illegal".
Richard
Agree 100% hopefully I can be awarded but who knows and yes it is very unfair.
I always challenge any decision which I feel is nonsensical nonsense. I’ve worked and payed huge amounts of taxes and NI. There was a point when I sent them a mandatory reconsideration letter plus attachments adding up to 60 pages. I asked them to get back to me within 3 working days. I have 2 painful medical conditions which have no cure. I’ve had over 20 surgeries and 3 cardiac arrests. The surgeons have advised that I will not survive another one. Why should I be sent a 30 page questionnaire every year?? Surely if a cure is discovered, will we not hear about it?? They make our lives extra difficult. 😠🤬
Hi, sorry you are so unwell. I don't know about pip, but I do know that whilst you're in hospital you don't get full ( if any) benefit. Even though you still have bills to pay etc while in hospital you are being fed etc. So when applying for back pay don't be surprised if they deny you a full claim for the months you are in Hosp..
Good luck, take care.
Hi thanks for the reply I am not in hospital anymore I’m awaiting a transplant and just going through all the complications and having good and bad days it’s all very confusing almost feels like a rollercoaster because one morning I might wake and feel ok and do a bit of house work or shopping but then within a few hours I might feel dreadful again and need to rest. Probably one of the worst things is the tiredness and weakness. The. Pain and things ease somethings but the underlying fatigue is always there I could literally sleep anywhere anytime I think. I ant plan anything in advance because I have no idea how I’ll feel at that day/time.
Hi, this could have been written by me!! That is exactly how I feel. I have PBC, cirrhosis, portal hypertension, enlarged spleen with varracies. Fatigue is so debilitating, as you say the frustration of not being able to plan. I always end up overdoing it on days I feel well and end up paying for it!!
I haven't worked since 2010 ( I never expected to still be unable to work), I get contribution based ESA. I was in the help to work group ( or whatever its called), but they changed me to support group. The women I was seeing at the job centre couldn't believe they had initially put me in the work group. So maybe she sorted it?? I did write them a rather grumpy letter when they threatened to stop benefits when I didn't attend a medical assessment. It happened on the day after I came out of hospital having had urosepsis, so was very unwell. I phoned to say I couldn't attend, they wanted proof I was too ill. When you're unwell having to go through any bureaucratic process is so unfair.
I hope you get support applying, and that you continue to have good days
Take care x
Aj, do you by any chance live on your own? I ask this as you maybe able to claim carers allowance. I think it would be fair to start any claim as of what your worst days are like, and take it from there. What a lot of people don't realise is the mental side to all of this as we can become frustrated and become depressed. That feeling of fatigue is also accompanied with a feeling of, "Oh, I really can't be bothered", and then you go onto blame yourself for being so lazy. It's a horrible battle. People when applying for PIP often forget to mention the mental aspects.
AT the end of the day, it's all about quality of life. If your quality of life is going to suffer if PIP isn't awarded then this needs to be addressed. Your local citizens advice bureau should be able to help, and I'd also get the local Welfare Rights involved too. Local Welfare Rights offices are normally in the Local council offices.
Good Luck on this, and please keep us posted on how you get on, as any feedback may well help others.
Richard
I can't comment on Universal Credit as it has come in only recently.
Shortly after my hubby was diagnosed with cirrhosis due to auto-immune liver disease back in 2012 I filled in the forms for ESA (Employment and Support Allowance), doctor provided a sick note at the time and then when the Work Capability Assessment was done (on paper) we got a decision without a face-to-face and hubby was placed in the Support Group.
A little while later we applied for Personal Independence Payment and I again filled in the forms as hubby was unable to, the face-to-face for PIP turned out to be a nightmare and the assessors report was full of lies. Hubby scored zero across the board despite being listed for transplant and not being at all well. We got the support of the local council Welfare Rights Officer and went through the mandatory reconsideration procedure (no joy) then attended an appeal tribunal at which the DWP decision was overturned and hubby was awarded Enhanced Daily Living and even some points for mobility. This award was backdated to the application date (it took nearly 2 years for them to get decision finalised). Only got a 3 year award so only a year later we had to go through the process all over again only by now hubby was off the transplant list 'cos his health had stablised. However, process was much better and hubby was awarded Enhanced Daily Living and Basic Rate Mobility this time round without any fuss - just face-to-face assessment.
Last year I had to complete a renewal form which just asked about whether there had been changes to health and again it was renewed (till 2020) without a face-to-face.
Recently had to complete a new Work Capability Assessment for ESA but haven't heard anything about it since.
When I am completing the paperwork now I use the fantastic member guides on the Benefits and Work website, we don't have a CAB in our area now so these online guides have been invaluable - you have to pay a small subscription to access them but they have proved worth every penny.
Hope you get what you deserve and need, don't let them beat you at the first hurdle. If you do get turned down pursue it all the way to appeal - they want folks to chuck in the towel but don't. It can be done & won. It's sad that in many cases like yours which are totally genuine become a battle for the help you need.
Make sure you get and provide medical evidence with your application, DWP and the assessment companies don't call this in because it supports you and not them and if you do go to appeal and you can put this paperwork in front of them you have a much stronger case. Hubbies consultant was great in the letters she wrote and as he was on the t/p list at time of first appeal t/p unit social workers and others also submitted paperwork.
Best wishes,
Katie
Hi Katie, I’m struggling with the forms sent for ESA recently. I’ve been in hospital for a while and I not managing. I noticed you made
a comment abou useing a fantastic member guides on the Benefits and Work website, as you don't have a CAB in your area. You said :
“When I am completing the paperwork now I use the fantastic member guides on the Benefits and Work website, which have been invaluable.”
Could you please let me know how to access the website and the I guides. I’m quite happy to pay for the help. I still have my forms and I’m terrified of losing my benefits. I’m disabled and live alone. I did call to inform them that my form will be late. Every little helps 😊
Thank you.
This is the site I referred to - benefitsandwork.co.uk/ If you join up you have access to their member only guides plus an advice forum. You could also try and find out if your local council has a welfare rights officer. Sometimes it's very difficult to fill the forms in yourself and you could get help. Our are has scrapped Citizen's Advice Bureau hence the reason I used these guides when filling in hubbies forms.
Definitely better to get help, Benefits and Work have advice on how to fill the forms in and the ways to ensure you are actually answering the questions asked.
Best wishes with it, it's a nightmare I know.
Katie
I’m going to go to the CAB tomorrow it’s all quite complicated and seems to differentiate from person to person. My partner works so I go to one of my family members most days until he’s home. Haven’t looked at Carers yet one step at a time 🙃
hi AJ
im sure other readers will give useful pointers I would just add
'document everything'
make a fuller entry in the diary than [docs @ 2,30]
and start a list of all the docs you see
Hi
O applied for pip and was awarded standard on both and got back pay from the date I applied. Couldn't believe I didn't need to go to appeal!! Xxxx
Personal Independence Payment (PIP) is a benefit paid to people with disabilities. It is in 2 parts. Daily Living and mobility. It is based on a points system. 9 points in each category get the standard rate 12 points gets you the enhanced rate. It is much better if applicants gets help to fill the form in - to maximize the opportunities of picking up points. After the form is filled in the claimant ill be invited to a Health Assessment by a 'care professional'. The assessor then completes an response which they send to you. If you disagree with the response you can then fill in a mandatory reconsideration. You only have a month to do this. If they turn you down again you can appeal. Citizens Advice will help you through the system.
Tips: this can be a long drawn out process (up to a year). Don't give up. When successful you get a payment back dated to when you applied.
The system is weighted against the applicant but it is not impossible.
Good luck with your application
Bob
Hi aj
How did you get on with CAB? You have a much better chance with a service helping you rather than going it alone for benefits. Have you also considered contacting ACAS to see if you have any annual leave payments you can claim? I'm not got on this but it is worth checking to see if you can have any unused paid in kind in terms of cash as you cannot take it.
Best of luck
Gill x
Hi AJ, I’m sorry you have to go through all this when you’re so young. I plodded along until 2014 then a cardiac arrest arrested me 😏. I’m at home and slowly losing my mind. I’m not one to lie in bed doing nothing but I have no choice. With reference to the PIP and UC, they’ll backdate it to when you made the application. At least that was what happened to me, even though it should have gone back further. They make you feel like they’re doing you a favour. I hope you have buckets of patience because you’re gonna need it. I had to wait almost 9 months for the assessment. If you are not satisfied with anything please write and complain. If you feel a decision is wrong, ask for a mandatory reconsideration. Put things in writing, call them, and make sure you get what you deserve. None of us asked for this, we would rather work than to be subjected to this. Take one day at a time or else you’ll be overwhelmed. Every year, expect a inter continental missile😂 in the form of a 25-30 page questionnaire which will come through the post to terrorise you. 😫. They need to know if you’ve found a miracle cure. For now, just concentrate on putting one foot in front of the other. You’ll be just fine. If not, gimme a shout anytime. Stay safe.
For people like me with multiple health conditions which although not “classed” as terminal have no cure and we live with terrible pain and depend on medication which stop working after a few years; is there any way we can get out of having to fill out these lengthy questionnaires that depresses us and leave us in pain. The conditions get worse with time and as yet there’s no cure. How can I stop this depressing exercise. I have ESA at the enhanced rate as well as PIP.
The only advice I can give is as follows... Before you send anything in PHOTOGRAPH or SCAN or PHOTOCOPY absolutely EVERYTHING before you put it on the envelope, and you then have copies of everything to refer back to if they start spinning their yarns of lies and you can prove what you sent them. Photos also have time and date stamps on them if they're taken on a digital camera or smartphone (actually even the older phones but times and dates on them too thinking about it) it can be tedious and takes ages, if you take photos make sure they're all in focus and you can clearly see all your writing. Once you have your copies, organise them in the order of the form pages (page 1 is photo 1 etc) and keep together with the date you sent the forms back and any proof of postage if required etc etc. It's worth it if you need to look back, you can keep all copies for years. Hope this helps! X
Help with funeral costs
PIP
Any advice welcome
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Brother with cirrhosis 
