PIP

[Jueloz]

There has been a lot of talk, quite rightly, about PIP claims.

I have Lupus, osteoarthris, a recent hip replacement (I am getting the other one done and both knees) depression, fibromyalgia, lumbar degeneration, etc etc and I have been refused any help whatsoever from the DWP. I am going to court soon, but I am not holding out too much hope. To get pip now you have to not be able to walk, think, wash, cook etc. tis extreme to say the least! If you can take a shower, make your dinner, wipe your butt then you are not legible. They don't take into account mental health - I was told I was fine mentally according to the "nurse" who was speaking to me for an hour. They don't take into account chronic fatigue , not being able to stand for long periods (coz you can stand) and if you are able to converse with the assessor to a reasonable degree you can forget it.

I am however going to court as I feel so strongly about people with chronic illnesses/disabilities who are either not going to receive any help or will have their help withdrawn.

I need to leave work as I am very sensitive to UV light - this sounds pathetic, but if (due to Lupus) I am under them for more than 5 minutes the Lupus flares and I feel nauseas massive headache etc. I work in a school so they can't just turn the lights off.

Just venting

J X

[georgie63]

Hi jueloz,

God reading your post absolutely terrifies me.

I am currently on Employment Support Allowance, and I am due for another medical. I also have a Lupus SLE, chronic pelvic pain, depression, overactive thyroid, as well as Osteoarthritis in both knees.

I hope that I will be able to get the benefit after and be in the support group too. There is no way I can go to work how I am day to day. Unless I can lay on a sofa while I'm at work otherwise they can forget it.

It's awful that they don't recognise some of our illnesses as being decapitating I bet if they had just a taste of what we go through day to day they might change their minds.

Good luck with your case in getting in known for what it is and I really hope you succeed.

Best wishes

Dawn

Xx

[lupus-support1 Administrator in reply to georgie63]

Dawn,

May I also invite you to LUpus Patients Understanding & Support (LUPUS). We do have Members who have some experience in this area and Patient Advocacy.

At the LuPUS Message Board, you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

I look forward to talking with you more!

Sometimes we need to talk to people who understand and who are not family or friends.

Be well!

Ros

[lupus-support1 Administrator]

Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

I mention this because there are some Members who have had experience with PIP and Patients Advocacy groups which might be helpful. It does seem that some people seem to get disability easily, but those with lupus and who really need help, are frequently denied. This is partly because they do not understand lupus and even the doctors used, have a poor knowledge, most, if not all, have never seen or treated anyone with lupus. MS, a genetic relative, is well known, and is really lupus of the myelin sheath. In lupus, every system (not just the myelin sheath) can be affected, so it would seem reasonable that lupus should be taken as seriously as MS, but this is not the case.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

I look forward to talking with you more!

Sometimes we need to talk to people who understand and who are not family or friends.

Be well!

Ros

[Jueloz]

Hi Georgie - I didn't want to scare anyone - just venting about my own experience of claiming PIP. The ESA allowance might have different criteria so don't lose hope. Indeed these people just need to live with all the symptoms of this kind of thing to fully appreciate how exhausting it all is.

Hope you are ok with your claim. The criteria for new claim PIP is stringent to say the least. ESA might be different.

Take Care

Julie XX