Metastatic breast cancer is not only taking the lives of 31 women per day. In the limited time they have left women living with this disease are experiencing financial hardship. Emma, a member of Met Up UK was diagnosed with metastatic breast cancer in her 30’s. Aside from the sense of loss for the life she had dreamed for, she needed to give up work. The physical issues of fatigue, poor concentration, an overwhelming number of appointments, increased periods of sickness and neuropathy (which impacted her fine motor skills) meant that it was no longer an option for Emma to continue working as a freelance electronics technician.
The nature of metastatic disease is that you can have periods of time where treatment is working, and the cancer is stable… But then there are times of progression and uncertainty and the risk that an infection can take your life, further compounding the fear and anxiety women with metastatic breast cancer experience. The current system for social support is not fit for purpose. It does not recognise these women as having a terminal diagnosis until they reach a point where it is deemed that they have less then 6 months to live. Instead, metastatic breast cancer is categorised as a chronic condition, despite the current data highlighting the median life expectancy as 3-5 years.
So, on the one hand these women do not want to be told their life will soon be over, but on the other hand without the DS1500 issued by their clinician, confirming they have less than 6 months to live, they cannot gain access to the relevant financial benefits that they need. This can create a financial trap. Emma’s experience is that TWICE she has been issued with the devastating DS1500 documentation. This meant that she was able to go through the (incredibly difficult) process to gain access to employment support allowance, housing benefit, personal independence payments (PIP) and a carers allowance for her partner.
However, now that Emma’s cancer is currently stable, in a cruel twist this means that her DS1500 is long longer applicable. Still unable to get work, because the circumstances preventing her from working remain the same (but now also include a pandemic, a four-year gap in her CV, and multiple voluntary commitments), Emma has had her PIP reassessed and massively reduced.
The reassessment of her PIP took several months to complete, during which time all payments were stopped, triggering a Mexican Wave of cancellation of other benefits payments… Emma had to spend weeks making phone calls and chasing decisions and has now been left in financial hardship, spending savings and borrowing money from family to make up the short fall. The anxiety caused by this experience has made Emma feel desperately unhappy. Although she works hard volunteering, campaigning, supporting cancer charities and other advocates, she feels like she is failing as an adult because she cannot support herself financially. “Who will employ someone with incurable cancer,” she asks. “I present a massive financial risk because of the likelihood that I will need to take a lot of time off sick, so I just feel completely hopeless.”
This experience is by no means limited to just Emma, there are so many people who experience the realities of cancer poverty. MetUp UK are calling for metastatic disease to be recognised as a terminal diagnosis and to acknowledge that the DS1500 is not fit for purpose. We believe that the uncertainty of cancer and the risks of treatment make it too difficult to predict someone life expectancy.
Stop putting a price on our lives.
By MetUpUK Member, Emily Lunn, with help from MetUpUK member Emma Robertson