Pip expert on forum

[Dragonfly4]

Hi, I believe there is a PIP person the forum that I may be able to with on the phone. Can anyone let me know who this is please. Thank you.

[Paul_Howard Partner LUPUS UK]

Hi Dragonfly4 ,

I'm afraid I'm not aware of anyone on this forum who can provide one-to-one guidance and advice on PIP claims over the telephone.

LUPUS UK do have a range of guides available which contain advice and helpful information. If you are a member of the charity then you can request them by email. You can learn more about this at lupusuk.org.uk/benefits/

If you need more hands-on assistance with your claim then I would recommend that you speak to the Welfare Rights Advisor at your local council (if they have one) or make an appointment at your local Citizens Advice.

[Dragonfly4 in reply to Paul_Howard]

Thanks Paul.

[Mammaelf]

What part of the PIP process are you stuck with ?

[Dragonfly4 in reply to Mammaelf]

Hi Mammaelf

Too long to write everything... in short... have multiple, more than multiple, autoimmune diseases for last 30 years, just turned 55, dx at 24 yrs, 25 ops on hands, stomach etc and 12 on feet, just had second dominant hand surgery (hasn't worked) then sepsis so hospitalised. Was changing from indefinite DLA to PIP to get advanced care component for daily living due to son leaving home and need extra help... application started end July, heard nothing, doctor letter and consultant letter clearly state I should not have face to face assessment due to severe agoraphobia and social phobia and it would be detrimental to my mental and physical wellbeing. Have full mobility component.

Provided 76 pages of consultant letters, surgeries, photos of what happens to me, meet all the descriptors without doubt (way over the point system) and now PIP say I have to still have a face to face in my home.

I asked how they can go against doctor and other reports for not having a face to face. They say they are entitled to overrule the evidence sent in.

I cry each day, got to point that I'm now angry and my one safe place is where they are coming tho they won't tell me when. New GP says "don't worry, as soon as they see you, it will be obvious". That's not the point. I suffer severe panic attacks and for reasons I won't go into, I should not be judged by these people. My doctors, consultants, OTs, surgeons can judge me, not ATOS, or IAS as they call themselves now.

All the descriptors are met, the letters from the doctor and OT for my consultant make it very clear where my difficulties are and what I can and can't do. Everything is in written evidence.

I do not understand how IAS can go against the medical advice to NOT assess me as my mental health is terrible and I have become more and more ill through waiting for them to even bother to contact me.

I have people who can be here with me and a medical professional from my GP surgery as I require oxygen when I have a panic attack... but I should not be put through this.

Telling me to let someone into my home to judge me is wrong... that's my mental health, being judged! No matter how stupid it sounds, history is something I can't go into.

Medical professionals can judge me, not people who aren't medically trained in diseases they have never even heard of and who do not know why my mental health is fragile. How everything affects my daily living and mobility has been evidenced by so many doctors.

My last op was 10 Dec, then 2 days later spent 4 septic days in hospital, then the letter arrives saying they still need to see me and an IAS manager tells me that they have to justify my needs to the DWP. No, the doctors and consultants have done that in writing.

Sorry, that is the short version of events. So much more, but the crux of it is why are they allowed to go against medical advice that an assessment is detrimental to my mental and physical wellbeing?

I don't care about being assessed, they can assess me through the evidence sent in, I meet all the descriptors, I don't want them in my safe place and I don't want to leave my house. I only leave my house for hospital appts.

Have speech and language therapist coming to my home on 14th as my vocal cords have slipped due to SLE, 21st Jan OT coming here, 22nd Jan see surgeon, 6 Feb see Acute Medicine Consultant, ENT appt in Feb and Rituximab biologics x 2 in Feb once my wound is healed (it's still open due to infection). Wearing leg braces, splints on both hands... feel sick with PIP every day. The system is a disgrace.

Please excuse my rant, I am a mess.

[Wittycjt in reply to Dragonfly4]

Can they do a face to face through video chat(facetime)? Possible option...

[Mammaelf]

Unfortunately it’s a requirement to have a face to face, unless they complete a paper based assessment with a DM.

You are allowed to have a litigation friend present, and can request to record the interview ( although they will ask you to use their specific equipment). The assessment should be approx 30 mins. Make sure you have a copy of your evidence to hand. Also your repeat prescription.

[Dragonfly4 in reply to Mammaelf]

Thank you for all your replies.

I should not have been assessed last week due to mental and psychological wellbeing. Assessor arrived at house, I had 4 family members with me in house, 2 in with assessor. Was crying before assessor arrived, was in a very bad flare and after 30 mins suffered an attack, couldn't breathe, was unresponsive and the 'health professional' apparently moved to sit next to me, held my hand and got me breathing again. I have no recollection of what happened during attack and slept for 3 hours after.

I scared my 22 year old son who has been a young carer since age 8... he insisted on being here as he knows me best... he was never so scared in his life as when I was unresponsive my right eye was half closed and he thought I had suffered a stroke. He is now struggling at uni and having nightmares and unable to keep food down. He has made a formal complaint to the DWP.

Assessor stopped assessment and on leaving stood outside my front door which has a video doorbell and I have a recording where she stated to my son "no face to face assessment again". Less than 24 hours later the IAS sent a letter stating I was to have another face to face assessment. LESS THAN 24 hours!!!!!!!

Various calls to IAS, DWP... they insisted I had to have another assessment and the assessor should not have said what she did. I vehemently said my piece to both agencies and said I was contacting my MP. They kept saying it's because I have such highly complex needs... well... really! Why the heck am I claiming PIP if I weren't so ill? Within half an hour, DWP called back and said they were writing to my health professionals. My Acute Medical Consultant is on special leave and unknown date of return, my GP has met me once and my OT is going to write a doozie of a report to them as she is so disgusted as the medical advice given by previous GP and her, acting for my consultant, said no face to face assessment. The IAS sent a letter today saying they were writing to the professionals who deal with my health BUT MAY STILL NEED A FACE TO FACE ASSESSMENT.

Have now sent EVERYTHING to my MP, including the video doorbell recording, I now have copies of all phone calls for IAS and DWP now on CD from Nov to Jan and Jan and Feb calls on way from a Right of Access Request. MP has sent me a letter and an investigation is proceeding as a priority.

Guess what IAS said? I could drop my claim OR ask for it to be sent back to the DWP having refused a second face to face. Refusing a second face to face is automatic denial of PIP. I did not answer them. This is what they do, this is how they get to wear down people to drop the claim due to the stress.

When I spoke to the DWP, they said, and I have a recording, they are scratching what happened last week and starting the process again. Seriously...

Oh no, they are not. They cannot change the rules to suit their needs. The rules are one assessment ... if that can't be done you get ONE MORE CHANCE to have an assessment THEN if refused, PIP denied.

And so it goes...

I have little faith in any politician...

however, I must now sit and wait for the DWP and IAS to come back and say they can't get hold of my Consultant (he is a specialised Acute Medical Consiltant for Complex Needs with a speciality in the U.K. for Lupus), the GP is a waste of space as she told me "don't worry, as soon as they see you, it will be obvious"... that's her level of understanding of my needs, and the only info they'll get is from the OT who already wrote a very comprehensive report of my needs.

Oh, and whilst talking to MP secretary, I had another attack... it lasted over an hour, again unresponsive, thankfully family member in house with me and got me breathing. He then phoned doctor who said that they should see me. No one has followed up.

Called GP practice manager on Monday, told she would call me back in afternoon, no call. Phoned again today, told she was not in and they would call me on Monday. Yeah right. A week later. Said I needed/must speak to doctor today... no call.

I think I have an enlarged spleen... and not even a doctors call back.

Why is this so screwed up!

Apols, just venting again, just goes round and round in my head and the fear of having another assessor... having an attack in my home with no-one here as I live alone...

What a mess!

[Hidden in reply to Dragonfly4]

Oh my goodness Dragonfly, I’m reading all of this, and my heart is breaking. I can’t even imagine the stress you must be experiencing because I am feeling very stressed just reading it. Do you have someone close to you, beside your doctor, who could advocate for you and take some of the fight off of your shoulders? I am so very sorry and I wish you all the best. I hope they come to their senses, because, for now, this just sounds like they are being stubborn. Stubborn and insistent you do it their way for no good reason.