Author Topic: PIP - personal independence payment  (Read 12042 times)

Lesley

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PIP - personal independence payment
« on: February 16, 2015, 04:41:35 pm »
I was called for an assessment today for Personal Independence Payment (PIP).
I received this last year and tbh had almost forgotten about it not thinking I wd b called this year for an assessment due to the complexities of the disease.
I have to say it was 60 mins of hell regurgitating my last two years and I sobbed for england.
I was asked to perform some ridiculous tests which I wasn't happy about as in no way did it depict the condition. At one stage I just urged them to ask me the question of who lived with me as I knew this wd upset me.
I was asked how many times I talked on my mobile phone and when I had last spent any money! What books I read - fiction or non fiction and what was I reading now and who was the author!
Is this just me feeling like a criminal?
This has really upset me today
Sorry if I've gone on a bit!
Lesley
« Last Edit: February 16, 2015, 05:00:31 pm by Miriam Vered »

JohnP

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Re: PIP - personal independence payment
« Reply #1 on: February 16, 2015, 05:50:30 pm »
PIP interviews have been a topic of a number of discussions on radio.

This document https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/368122/pip-assessment-guide.pdf sets out the standards, and the criteria that the assessors who must be Health Professionals (HP) should follow.

There is a shorter version here https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/348736/pip-handbook-aug-14.pdf

These might provide anyone facing a PIP interview with some understanding of the process.

Disability Rights UK has a large amount of information available http://www.disabilityrightsuk.org/personal-independence-payment-pip.

Clearly Amyloidosis is a rare and complex disease that will not be well understood by the majority of HP. This is reflected in guidance given by the DWP (in relation to the old DLA and AA benefits) https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/384587/a-z-adult-medical-conditions-dec-14.pdf. These make it clear that decision makers (considering the award of benefits) should seek advice "if necessary in relation to Amyloidosis.

In the case of a number of diseases, including Myeloma, some lobbying has taken place to try to ensure that the DWP and its agents managing the PIP process are aware of the impacts of the disease. This is something that I will raise in discussions in the near future.



suetrain@talktalk.net

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Re: PIP - personal independence payment
« Reply #2 on: February 16, 2015, 06:39:18 pm »
Well Lesley, having quickly looked at the procedure that the HP should take with people who are terminally ill, I can honestly say from what you told me today, that was not followed. It states clearly that your medical records were looked at not what book you are reading and who was the author.

I will look at it further, thank goodness for the Forum, as help is so badly needed.

patpinchin

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Re: PIP - personal independence payment
« Reply #3 on: February 16, 2015, 07:06:41 pm »
So sorry you had such a miserable and emotionally draining experience Lesley. Do hope the outcome will be positive for you. Perhaps John's discussions could lead to an Amyloidosis training session for those employed in managing the PIP process.
Pat

suetrain@talktalk.net

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Re: PIP - personal independence payment
« Reply #4 on: February 16, 2015, 07:41:47 pm »
Well said Pat, How people with any type of terminal illness have to put up with the questions asked to Lesley today, I do not know, I think it is disgraceful.
I am in agreement Amyloid and any other condition, should and must be made aware for the main benefit of the patients. Also how can anyone be assessed if the person asking the questions do not have any knowledge of the relevant condition.

Lesley

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Re: PIP - personal independence payment
« Reply #5 on: February 16, 2015, 08:51:49 pm »
I just wish that  sue had come with me. I couldn't answer one of the questions because I was so emotional. The 60 minutes it took I think can honestly say were worse than actually being told I had amyloid. That was dealt with compassion. I was literally a number in a box to b ticked off by someone relating a bad back to amyloid. I actually still feel an emotional wreck from it
Lesley

Lesley

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Re: PIP - personal independence payment
« Reply #6 on: February 16, 2015, 09:20:46 pm »
So john forgive me when u say raise in discussion .. Can u fill me in and sorry if I haven't read something I should have
Lesley

Miriam Vered

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Re: PIP - personal independence payment
« Reply #7 on: February 17, 2015, 08:37:24 am »
Hi Lesley,
John is a member of the UK Amyloidosis Advisory Group - see www.amyloidosis.org.uk/essentials/about-us/
We will discuss the subject of PIP at the next meeting of the group.





Lesley

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Re: PIP - personal independence payment
« Reply #8 on: February 17, 2015, 10:22:34 am »
Thank you Miriam & John.
I must be losing my marbles but I found the whole thing so distressing. Im still quite upset today that I wasn't given the opportunity to actually explain Amyloid and the real effect it has on you mentally and physically. Each time I tried to explain I was dismissed with there are questions we will ask that you just need to answer. I felt as though I had made the condition Amyloid up and to explain my weak legs I had to advise how weak they felt during the day. I tried to explain Amyloid was in my liver/kidney/spleen/heart/bones & spine but this was dismissed.  The whole 60 minutes I found so upsetting re telling parts of my life that I didn't wish to discuss with a stranger and of which I found very upsetting. They had told me they were going to write to one of the contacts (Drs / hospital) that I had given them permission to write to. They hadn't received this as I had been in to my Drs last Friday and they said they had some documentation from PIP to fill In so they had no information prior to my visit.
Lesley

Lesley

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Re: PIP - personal independence payment
« Reply #9 on: May 22, 2015, 09:08:59 am »
Morning

I got home last night to find that basically PIP had re looked at my case and withdrawm my allowance and mobility allowance. You have to earn a certain number of points and for my ordinary allowance I received 0 and for mobility I received 4! How it can go from the figures I got originally to this, I just don't know!
I am quite upset that someone who knows nothing of Amyloid and how it affects your life, can come to this conclusion. Of course I am going to appeal. But I was wondering if any of you had done so or what was the best route to take.

I will print out John what you have given as attached on previous postings.
Thanks

georgeturner

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Re: PIP - personal independence payment
« Reply #10 on: May 22, 2015, 11:42:21 am »
Hi Lesley,

Sorry to hear you have lost your PIP allowance. I don't have any experience of dealing with PIP, but I agree you should appeal.

Perhaps you can get support from the Maggie's Centres.
I went to a Myeloma UK Group meeting last night at the Glasgow Maggie's Centre, and although I have ATTR Amyloidosis and not AL Amyloidosis, I was made very welcome by both the Myeloma UK nurse running the group and the Maggie's Centre staff. One of the ladies I spoke to is the Maggie's Centre Benefits Advisor. I was told to drop-in any time I was passing by.

There are Maggie's Centres around the UK attached to NHS cancer hospitals. There is also a Maggie's Online Centre. I've attached a link to their website. Hope they can help.

https://www.maggiescentres.org/

"Maggie’s offers free practical, emotional and social support to people with cancer and their families and friends. Help is offered freely to anyone with any type of cancer. Simply drop-in at any time - you’re always welcome."
Slainte Mhath,
George

Lesley

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Re: PIP - personal independence payment
« Reply #11 on: May 22, 2015, 12:59:28 pm »
Thanks George - that is interesting. I haven't heard of Maggie's before. We do have a very good Macmillan centre near me.
I just feel sad because Amyloid isn't a recognised disease, no one understands the after effects, mentally and physically. I was asked if I can prepare/eat/nutritious meals. But they don't ask if exhaustion inhibits this! They ask how far you can walk, but don't ask how weak your legs are! Its very mentally draining to have to fight your own corner. I'm great at fighting someone else's!

Thanks again

suetrain@talktalk.net

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Re: PIP - personal independence payment
« Reply #12 on: May 23, 2015, 04:41:54 pm »
Well Lesley, I will help all I can, but do not forget the advice that Pippa gave you at MRI, as you are going in with Craig it would be advisable to have a talk to her again. Am I correct in saying Macmillan can also help.  I am certain that the Amyloid group will also have routes to take.

patpinchin

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Re: PIP - personal independence payment
« Reply #13 on: May 24, 2015, 10:01:32 am »
So deeply sorry Lesley to read this. Your first interview was such an ordeal only to be overcome with the news that your allowance had been rewarded. Now they have pulled the rug from withunder you. The cruelty of bureaucracy on the vulnerable. I think the powers that be know this and use it to their advantage. Now the emotional, physical and traumatic process of the appeal......but appeal you must. Take someone supportive with you. Powerful convincing words needed. Try to tackle this positively with a will to win. May your inner strength get you through. You do have that in spadefuls  tho' it may not feel like it right now. Big hugs xxxxx
Pat