Hi, I finally retired from work in July and although I no longer have the stress of having to deal with stress , I'm still no better. Aching limbs and muscles, lethargy so bad that some days my brain refuses to connect with my mouth! Anyway, plenty of you will have all this and more. Urso is working which is great but I know that this is only slowing down this crazy disease. My family suggested that I apply for PIP and now waiting for the form but worrying about it all the time. Have any of you applied and what was the outcome? I've read stuff on here that PBC is automatic award but I saw that a man with one leg has just been refused! The Governemnt are trying their hardest to stop paying disability benefits and in my current state, I could not cope with any appeal system. Any advice would be great, thank you.
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CathieG
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Has anyone on the PBC forum applied for PIP and been able to advise.
I know some on here have and will hopefully come along and advise soon. As far as I understand the application process, the diagnosis itself has nothing to do with the outcome of the award. Its all to do with how you are affected in your day to day life by your 'disability', whether you need care from someone else, how far you can walk etc.
Hi Cathie, unfortunately no condition gives you an automatic award of PIP, as Bolly has said it isn't the actual diagnosis which scores the points for PIP but how your condition including any medication affects you on a day to day basis.
If you have a citizens advice bureau in your area they might help you to complete the form (which is an effort in itself) or I found amazing step by step help on the Benefits and Work website at :- benefitsandwork.co.uk/ They have a guide on how to complete the form in a format likely to score you the necessary points plus have a guide on the format of the face-to-face assessment etc.
I have to fill in my husbands claims because he just couldn't manage it himself due to his cognitive difficulties brought on by extreme fatigue coupled with HE symptoms. Hubby has cirrhosis due to auto-immune hepatitis.
Unfortunately at his very first face-to-face assessment the 'nurse' was less than sympathetic and she totally ignored every single detail we put on the form and the decision makers went with her points and scored hubby a zero across the board. We got support from our local council Welfare Rights Officer to take the matter to appeal and at appeal he was given the enhanced rate of daily living allowance for two years (back dated). At the end of that two year award we reapplied and this time the face-to-face was an altogether more sympathetic and supportive experience and after only a couple of weeks we got notification that hubby was now going to receive enhanced daily living and also the basic rate of mobility (due to his inability to make journeys alone and unsupported).
I won't lie the experience is stress full with the short time they actually give you to fill the form in i.e. you may have applied already and as you say you are waiting for the forms. By the time they arrive you might only have a fortnight left to complete and submit it. The waiting for face-to-face, also be prepared for them to send you to next available appointment and they can send you a vast distance for this - phone up and explain your difficulties and request a closer assessment centre. [All part of the dirty tricks to stop folks applying].
The arrival of the envelope is dreadful too, first time round hubby was just back from an appointment about his being assessed for transplant and we came in the door to the pack of lies which was the decision letter.
Don't be put off, you've contributed all your working life for the right to claim if you need it and if you do feel you need it then apply. The guides on that website I mentioned really do help you lay it all out step by step.
Also ask your consultant for a letter detailing your day to day difficulties - ATOS, Capita or DWP will not go in search of these details so back up all your claims with as much medical details as you can - that way if you do go to appeal their decision can be challenged in that their assessor has seen you for about 20-40 minutes of your life but your medical team has known you however long.
Don't be put off, if you feel you need the help then claim. My hubby would have walked away from his due to the stress of it all but we followed it through and 'won' though it shouldn't be that way when someone is so desperately poorly.
I only went to CAB once. I was very ill and just needed advice about benefits as I was on the transplant list and new it would be some time before I could work.
It was a terrible experience, the 'ADVISOR' just listed off a load of web sites but was mainly concerned that my jaundice was contagious. In my weakened state I found this very upsetting, and when I left I was quite emotional. It exasperated my paranoia that was already a symptom of my liver disease.
I was looking for some help in actually obtaining and filling these forms out because as I was very ill and not able to focus on a task like this. As it turned out the advisor was less than sympathetic and little better than useless with the advice.
Honestly it really was a low point pre transplant.
Don't they just send you leaflets showing how to fill in the form? I would rather have face to face help as I'm finding it hard retaining information. Thank you for replying.
Unfortunately as they try very hard to keep people off the benefits any information they give you to help fill in these forms will only be in their favour.
The Works and Benefits Site is on our side and know what terms to use in order for you to get through.
Just have a look at the site and see what people are saying you don't have to join at this point.
Just one tip ,when you do fill in the form send copies of every available letter you have from the hospital appointments. That worked for us. I think there were so many issues they gave up and passed Mike without even seeing him.
Speak to a charity called fight back 4 justice, you can find them on Facebook. They are fantastic and will speak to you over the phone and will also help fill out your form. They helped my father. X
I did attempt these forms when I was ill. I don't remember it getting me anywhere. They're not really geared up for something like liver disease. There's plenty of questions like can you walk 100 meters but I don't remember any about things like concentration.
But good luck you never know.
I ended up spending all my money having sold my house. Still I survived, that was and still remains my attitude.
You need a home visiting benefits advisor. age Uk or similar. citizens advice web site has a step by step guide on web site. You need medical support letters that support your day to day difficulties . Since they have no idea how you live you have to be very specific and direct them. Get an adult services assessment from your county council of your care needs. That will not be quick but it is extra evidence of the fact you are not coping. Do a daily diary. Getting to toilet method/pain/ feelings or mood. What AIDS you need. How you cope dressing,cooking,sleeping who helps you etc
( apologies for grammar and capitals cannot amend but you get the gist)
Since last week government reduced points so less people qualify for pip.
Also person who had hard time cab gateway assessor so just get details full appointment with a benefits advisor should be a positive supportive experience. Do not hat appointment prejudice asking for help.
Hi, I have applied for PIP and get a weekly allowance. My husband filled out the forms as I am unable to hold a pen for more than a few words. A lady came to visit me at home and we just chatted about my illness and abilities. If u suffer with HE it means that you are unable to look after your own accounts, money and taking of medications. Things like this are all taken into account. I have also got confused and LOST 1/2 mile from home so can no longer go out alone if suffering a 'bad day'. I found they were there to help, you can even apply if you are working and earning money.
Don't be afraid to apply, you have nothing to loose and I found the people there so kind, I burst into tears once while on phone to them as I had to recall events that I would sooner forget, and they were so understanding and took time with me. Go for it, and good luck. x
Hi, i did made an application last year and I was rejected, i do suffer from liver cirrhosis due to hep B and D but I didn't had tje strength to take other case into court and i replied this time once again but now I am prepared mentality to take this matter into an Appeal to court as is unfair that system play peoples with disability around and there is not black on white a benefit for us unless you do not keep up a fight with them
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