Non dying quick enough for Personal Independence Payment (PIP)
I remember the 22nd April 2021 very clearly, it was the day after I had been diagnosed straight to stage 4 (de novo) breast cancer. I was in shock.
It was also the day my local Macmillan Welfare Benefits Officer phoned me.
Someone I’d never met, a stranger, wanting to talk to me, honestly and openly, about our finances who kept mentioning palliative and terminal. It was too much.
I felt guilty at the thought of receiving money that maybe I didn’t need. After all, my husband was retired and on a good pension, I had a great job, we had no mortgage, our children had started their own lives, and when the inevitable giving up work happened, we’d probably be ok wouldn’t we?
Fast forward to April 2024….I AM STILL ALIVE.
After having PIP awarded at the enhanced rate, under special rules, back at the time of diagnosis, and thanks to Macmillan Welfare, who also sorted out my well-used Blue Badge, my 3 years of having a financial buffer to ease the constant drain of metastatic breast cancer came to an end and it was time to reapply.
Like many metastatic breast cancer patients, I presumed incorrectly that renewing PIP would be straightforward, that it would be easy, and that it was just a formality.
After all nothing had changed…….
I was still stage 4
I was still on daily treatment
I was still incurable
I was still going to die from a cancer-related illness
But in April 2024, something did change……
My PIP stopped.
Despite completing the PIP application form in detail, utilising the support of a close friend who is familiar with the process in her daily work, and having a comprehensive letter of supporting evidence from my breast oncology team, it was a NO.
Despite a gruelling 90-minute telephone assessment with a clinical nurse (supposedly from the caring profession), an assessment, where despite the friendly, sympathetic tone, I couldn’t shake the feeling that every pointed, well-timed question was designed to ‘catch me out’, it was a NO.
Financially we were ok, it wasn’t the end of the world, BUT it was the wrong decision.
Why didn’t I qualify for PIP any more?
Was it because after 3 years of being terminally ill, along with the emotional and physical strains that are with us daily – I WAS STILL ALIVE?
The PIP rejection hit me, I couldn’t sleep, had the telephone assessment going on my head continuously.
What should I have said?
What should I have included?
What could I have done differently?
The decision letter from DWP was a frustrating read, sections of text obviously cut and pasted from a generic document, with an almost complete contradiction to what I had documented in my original application.
The copy of the assessor’s report, which I subsequently requested, was shocking, and it was obvious from the concluding paragraph that I had been penalised for ……
Being intelligent, polite and friendly
Being able to converse with my assessor without prompting
Being able to discuss my diagnosis, treatment and side effects in detail
And the icing on the cake………
That I didn’t ‘audibly yawn’ whilst on the call. YES, that was actually documented!
This made my blood boil, as if metastatic breast cancer patients haven’t got enough rubbish going on.
The decision to fight this injustice was made. With the continued support of Macmillan Welfare, who have submitted a response to the DWP on my behalf, quoting case law etc., my Mandatory Reconsideration is in the system. I’ve been told that a decision will be made by the end of October, 26 weeks after my PIP stopped.
I completely understand that as treatment is currently keeping my cancer stable, under the current system some healthcare professionals won’t sign the SR1, (although of course, I could still die within 12 months.)
At a time, when as stage 4 patients we should be saving our energy, spending time with those we love, making those memories, going on those holidays, we instead find ourselves fighting a system, fighting an injustice, fighting an inconsistency.
Telephone calls, letters, emails, administrators, clinicians, assessors and red tape.
A system that is complex, time-consuming and judgemental. What a waste of time and money for CAPITA and DWP. What a waste of time for us. What a waste of time for me.
Wish I could conclude with a positive update, but as of yet, I don’t have one.
In my personal ‘COST OF LIVING’ the jury is still out.
Who Really Cares?
Sue Thomas
Facebook @Sue Thomas
Instagram @secondarychance
Twitter @suscan1964