I have just been in hospital with a gi bleed I’ve been signed off work by my GP for 6 weeks I have two weeks left on my note I don’t feel any better still suffering with fatigue and very weak my last blood count was still low I’ve been prescribed iron now I’ve already changed my job from manager to a less stressful role and dropped a day so I now work 4 days a week with a significant drop in salary. I do not get paid when I’m off sick so I am really going to struggle my husband works part time do he helps with house work shopping etc I have portal hypertension and have varicies I’ve had them banded twice I have some more now grade 1and grade 2 I’m having some more banded in August which means I will have to be off again I have just been refused pip because they said my illness does not effect my daily routine. I feel really down at the moment
Lorraine
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You really have to provide loads of proof with your PIP application as to how the illness affects you day to day. My hubbies first liver symptoms was a bleed from varices and the chronic fatigue, he gets PIP at the enhanced daily living and basic rate mobility. We had to fight the first application all the way to appeal tribunal but subsequently his renewals have all been done on paper. I use the Benefits & Work website to complete hubbies forms and his consultant writes us some brilliant supporting letters. Hubby does have minor HE too which does affect his cognitive functioning so there are things in the PIP descriptors that he really struggles with and needs help with. I have been able to claim Carers Allowance based on being hubbies carer too. benefitsandwork.co.uk/
Hubby has never been able to return to work since being diagnosed with auto immune cirrhosis & portal hypertension (42 varices banded) back in April 2012.
I was diagnosed over two years ago I’ve carried on working and feeling so tired, I had two have to scopes done in hospital was on all kinds of drips blood thickener antibiotics saline and can’t remember the others I had two/3 units of blood separate occasions I had an allergic reaction to the last unit and was covered from head to toe with a rash that looked like I had been scalded I’m still struggling to get any energy back, just don’t know how I’m going to go back to work, I work with small children and babies who can be quite demanding at times. I’m also diabetic type 2 my teeth are suffering since the pandemic my gums bleed even during the night. I’m finding the whole thing depressing and really struggling to cope mentally, but because I don’t take medication or see a professional for my mental health pip are not interested in that either. I had my assessment over the phone how can anyone tell how you are over the phone. I do feel like some of the things I said she left out or played down she said I wasn’t breathless at any time. I was in bed so I’m not likely to be breathless Thank you for your earlier reply
We had to go to tribunal, hubby scored zero at face-to-face and report was lies from beginning to end. After appeal hubby got enhanced daily living. He was just about to be listed for t/p at time of his f-to-f. Hubby 10 years on now and still unable to work.
Think it’s hard to provide proof when I don’t get told much when I attend the liver clinic what sort of evidence do I need the only thing I have now is my discharge information from the hospital I have had sick notes but they have been sent into work hope your hubby is well at the moment Take care
You could write to your consultant and see it they will provide a letter in support, with all my hubbies renewals i've asked for a letter of support and outlined to consultant what I am putting and do it for each of the descriptors where you think you score points.
I've explained to consultant what we think hubby scores and why and they have then written a letter explaining that he struggles with x, y & z because of his symptoms of chronic fatigue, HE etc. etc.
You have to write your explanations for each descriptor bearing in mind you are often being assessed by someone who has zero knowledge about what liver disease entails & quite often who has made their mind up before the assessment. In hubbies case we knew before we sat down he wasn't getting an award the first time, 'nurse' was horrific. Sadly, a lot of the assessors for atos/capita etc. are people like physiotherapists who absolutely don't get that liver disease brings a crushing fatigue, that isn't just physical but also mental, put that together with the mental health/adjustment depression type situation that comes with a new diagnosis.
The Benefits and Work website has an outline of a daily diary you can keep which will back up your claim. You just have to provide as much information as possible.
Discharge information from hospital is essential - every bit of hospital paperwork you get should be copied and included - NEVER send originals - keep a file with all your paperwork.
Hit them with as much PROOF as you can gather, they won't ask for it, they won't gather it themselves.
Hi Lorraine. Sorry to hear about your PIP and health problems.Like AyrshireK I recommend you have a look and benefitsandwork.co.uk. Their guidance does seem to help many people navigate the PIP minefield. Good luck.
Citizens advice have people who can help with the form filling, I know that can be exhausting, and may be able to help with an appeal. Something like 80% get through on appeal. citizensadvice.org.uk/benef...
We had brilliant support from the local hospice who will support with applications but lots of people associate hospices with dying so you may not want / be able or be ready to go down that route. We had to ask our consultant for a referral because liver doctors (unlike cancer doctors) don’t think of palliative care referrals at an early stage to help people live well. Your GP may be able to help.
You don’t say what your liver disease is but the PBC foundation may also be able to help, they are very good at advocating for people.
Are you a member of a union? They may also be able to support you.
HiI have just been in touch the the CAB they have told me what to write in the next process before appeal then if I get through that they will help me fill in the appeal paperwork.
As you say it’s a drawn out process I just feel like saying I can’t be bothered, what’s the point.
You’re welcome, I know it feels like hard work when you’re suffering with fatigue, but if it helps you manage financially it will be worthwhile. Hang in there and let us know how you get on.
Hi Lorraine,
If you are UK based, you are welcome to call our nurse helpline, we are not benefits trained but we can have a supportive chat? You are not alone.
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