End stage Renal Failure and PIP

Poppie68

Has anyone got first hand experience of claiming PIP for End stage renal failure?
The person in question is undergoing dialysis at home daily for 8 hours, suffers from constant nausea, multiple joint pain, depression, struggles with walking due to severe fatigue and joint pain...Needs help with care while hooked up, feeding, toileting. Needs help with keeping on top of meds and sticking to their strict diet..

Has been told they will have a possible 2 year wait for a transplant, has a rare blood group as well which complicates matters further.... Is severely struggling to get their head round the situation and their regime.

They have been allocated a hospital social worker who has told them that basically they don't stand any chance of getting PIP as they have dealt with others in the same boat....Now this person's couldn't get any worse at the moment as they have been told if no transplant takes place in the next couple of years they will be dead within 3 years.....they are 25 years old!

They have recently been admitted overnight every week for the last 6 weeks due too complications and infections..


Is it really impossible(I don't believe it is) or have others found it easy to be accepted for PIP for the same or similar problems?



Any help is very much appreciated.

faerielight

I can't speak personally as I haven't been transferred from dLA to PIP yet, but it isn't impossible.. Your friend sounds very ill and disabled by his condition and PIP is for ill people. My best advice is to join Benefits and Work, run through their guides and familiarize with the "descriptors".Best of luck on behalf of your friend.: http://www.benefitsandwork.co.uk/

Poppie68

faerielight wrote: »

I can't speak personally as I haven't been transferred from dLA to PIP yet, but it isn't impossible.. Your friend sounds very ill and disabled by his condition and PIP is for ill people. My best advice is to join Benefits and Work, run through their guides and familiarize with the "descriptors".Best of luck on behalf of your friend.: http://www.benefitsandwork.co.uk/

Thanks faerielight I'm also in receipt of DLA and know and understand the process, I think what has stumped us all with his case is the social worker who is allocated to the Renal Unit and her view of things...
He is still employed and trying his hardest to stay in employment but it truly isn't helping his Renal failure or stress levels, the reaccuring time off bothers him more than his employer..

I'm going to register on Benefits and Work site and suggest he gets help completing the forms from a Benefits advisor....

He down plays his condition and the effect so another worry is him attending an assessment as he will try to make out his life is all peachy....Hopefully all the evidence I have advised him to obtain may negate the need for an assessment...

Are there any others here that have RF had a positive PIP result without an assessment?

benrben

Don't have any experience of claiming PIP with the illness your friend has, but they seem to fit quite a few of the descriptors, my son receives it for his MS & CFS, some of his issues are very similar to your friends. We received help/advice from the MS society & AYME when we were filling in his forms when he moved across from DLA to PIP, it may be worth you contacting something similar like this
http://www.kidney.org.uk/advocacy-service/

nannytone_2

socail workers and doctors are the last people you should listen to when it comes to benefit advice.

talk to someone that deals with benefits for a living for accurate information like the CAB, DIAL or a charity dealing with dualisis

Poppie68

nannytone wrote: »

socail workers and doctors are the last people you should listen to when it comes to benefit advice.

talk to someone that deals with benefits for a living for accurate information like the CAB, DIAL or a charity dealing with dualisis

I agree but this particular social worker claims to of known many RF patients who have failed in their claim so I think the person in question has been left very down hearted with it all.....I'm going to help from now on and source the appropriate help....I was just wondering if anyone on here was or has experienced problems in claiming for RF.

poppy12345

Poppie68 wrote: »

I agree but this particular social worker claims to of known many RF patients who have failed in their claim so I think the person in question has been left very down hearted with it all.....I'm going to help from now on and source the appropriate help....I was just wondering if anyone on here was or has experienced problems in claiming for RF.

You really can't compare 2 people because everyone is different. PIP isn't awarded based on diagnosis. It's how your condition/s affect you in daily life. What may affect one person, may not affect another if you know what i mean. It does sound like this person struggles alot in daily life. No harm in ringing DWP to start a claim off to be honest. Good luck!

Finefoot

Would your friend be able to apply for a personal health budget? As it is a long term condition?

Poppie68

poppy12345 wrote: »

You really can't compare 2 people because everyone is different. PIP isn't awarded based on diagnosis. It's how your condition/s affect you in daily life. What may affect one person, may not affect another if you know what i mean. It does sound like this person struggles alot in daily life. No harm in ringing DWP to start a claim off to be honest. Good luck!

He's thankfully taken the plunge and set the ball rolling today.

Poppie68

Finefoot wrote: »

Would your friend be able to apply for a personal health budget? As it is a long term condition?

Personal Health budget?... I will have a Google now but it's not something I have heard of before thanks.

Poppie68

I've just had a quick look is the PHB the same as Direct Payments?
I don't know if it would be appropriate for him though, he has visits every other day from the Community Renal nurse....He has his partner(my daughter) who provides most of his daytime care and various members of his family who he currently lives with provide care if needed through the night.
Himself and my DD don't live together at the present because her HA property is too small for his needs, she has a 2 bedroom as she has a little one but he needs a room where his equipment can be stored and a sterile environment maintained as he is prone to infection... They are gathering evidence at the moment to present to the LHA and HA to move on medical grounds which will make life easier for them.
It's a shame as my daughter did go back to work after her little one was born nearly 3 years ago but has had to give it up to care for her partner, which she doesn't mind at all but only a few months ago they were both working full-time and now neither can continue with the situation as it is..
Sorry for the long story!!!!