Author Topic: Terminology for Amyloid!  (Read 4331 times)

Lesley

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  • Reason for joining: Amyloid patient (AL)
  • Diagnosed: December 2012
Terminology for Amyloid!
« on: March 24, 2016, 10:49:29 am »
Morning

I am struggling on a day to day basis and having had my PIP reduced to the lowest level - £21 a week - I have to keep on working full time. But interestingly I decided just to have a look at the PIP information posted.

I don't want to sound or seem macabre but I looked up 'is Amyloid terminal'. I know obviously that some patients are living much longer but could this be classed as a 'terminal' illness for PIP cases???

Im really not scare mongering just wondered what others thoughts were on this?

Thanks
« Last Edit: March 29, 2016, 11:08:50 am by Miriam Vered »

Miriam Vered

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Re: Terminology for Amyloid!
« Reply #1 on: March 29, 2016, 11:09:09 am »

Hi Lesley,
 
According to the Marie Curie website that John linked to in his post about PIP,  (https://www.mariecurie.org.uk/help/money/benefits-entitlements/living-with-terminal-illness/special-rules), for PIP purposes "you’re living with a terminal illness when your death ‘can reasonably be expected’ within the next six months."
Also "If you’re told that your death could reasonably be expected at any time in the next five to ten months, you can claim under the special rules. If you live longer than was reasonably expected, you just carry on claiming under the special rules – always assuming that your death can reasonably be expected within six months."
Life expectancy can vary extremely widely between different patients with amyloidosis. Some patients with amyloidosis could qualify as terminally ill under the new rules. But amyloidosis cannot be defined as terminal for everyone according to the PIP definition. According to John's research into PIP, patients who think they may qualify should ask their doctor to complete a special form: https://www.gov.uk/government/publications/dwp-factual-medical-reports-guidance-for-healthcare-professionals .