Hello @Alice_BloodCancerUK
When I was diagnosed with Acute Myeloid Leukaemia, I was fairly immediately admitted to hospital and spent 4 out of the next 5 months there, so couldn’t really apply for PIP until I was back home after a Stem cell transplant. I had a cancer benefits advisor the hospital put me in touch with, but he did nothing for three months, then left his job without providing any advice at all.
When I got home from hospital, I was too ill to read a single sentence of the mammoth PIP pack (despite having maximised benefits for other people in the job I lost a few weeks before my diagnosis) and my husband didn’t know where to begin with it - so we literally did not get a penny of benefits in the 2 years I was off sick (except national insurance credits.)
We weren’t entitled to other benefits because we had some savings. My husband had to take 8 months unpaid leave from his job at sea, to look after son/pets/house until I was able. I didn’t have critical illness cover or sick pay from a job - I’d just lost my job. Having blood cancer therefore cost us many tens of thousands of pounds. And no one told me for many months that I was at least entitled to free hospital parking or help towards the costs of the regular 5 hour round trip to my transplant hospital! It was disastrous for us financially.
Usually I’m good at investigating what people are entitled to - it was part of my job - but when you are desperately ill, your brain just doesn’t function and other people need to step in and help, because you haven’t the energy or mental capacity to deal with complex claims. I literally couldn’t think. We were particularly unlucky because it was the height of the pandemic, and so no friends or family were around to help us, and support services were much reduced or non-existent.
I also asked for counselling, but was told by both hospitals that treated me that there was no funding for it.
I feel very lucky to be alive, and I can’t fault the marvellous medical treatment I received, but I have to admit, the advice and benefits side of things were terrible, and we were really let down. But I would take a big financial hit again and again, just so long as I survived. That’s one positive about nearly dying - you can shrug off more of your non-life-threatening problems.
Anyway, am back in work now and all that’s behind us. C’est la vie. Hope the info helps.
