My initial diagnosis in 2010 of melanoma was terminal, I applied for DLA and my Doctor supplied the medical form stating terminal. I still received low rate benefit, I asked for an appeal and had the assessment in the middle of having 2 operations but had to chase them up. DLA told me now that it had gone passed 6 months ” well you haven’t died, so the high rate doesn’t apply” yes the exact words after arguing that the stress of chasing up and the fact my doctor’s can not provide an actual death notice but did support a terminal diagnosis and although we are all hoping my trial drug helps it’s not a guarantee.
I stayed on low rate and appealed again. I started a trial drug that same year and committed to 3 years treatment, that led to what we now know as the mother drug to immunotherapy. Yes I am still very much alive 8 years on and have had return of cancer in other areas twice more to which more operations have taken its toll on my body and mind. I finally received high rate the year DLA went over to PIP and then lost high rate because the assessor said “you read books, my home was well kept and I could hold a conversation with eye contact”. I read books because I was a professional in psychotherapy and it is still my passion, I’m a good communicator because I am a therapist and my home is tidy because I have been brought up learning a clean home is a tidy mind.
The fact that I am seriously operated on with limited use of my left side upper back and arm or that I suffer huge anxiety with new people was irrelevant as was considering my current return of cancer which had gone from terminal to stage 3 to stage 4 in 8 years, this was not accounted for and left me devastated. In the 8 years of diagnosis I lost my mortgaged home
due to financial difficulty, became homeless which took 4 years to be homed, was now
an unemployed therapist (a therapist whose depressed can not work).
I was 30 years old when all this started, PIP told me as I am young I will bounce back and that I have a good chance of recovery. Yes this is hopeful sentiments and I am very hopeful, even when professionals are preparing me for life being cut short, but let’s keep to reality one step at a time. Seriously DLA and PIP who are terrible in the assessment of mental health, medical understanding and bed side manor have to consider that most people do not want disability allowance for fun but rely on the benefit to survive. All my benefit went on hospital transport because I was under 3 hospitals for my care, without those hospitals I wouldn’t be here today. The stress of the assessments, the rudeness and assumptions often caused me more distress and worry than cancer itself.