The following article is based on the writer’s experience and expresses the opinions of that person.
I am a 32-year-old student, who has recently finished my first year of studying English Literature and creative writing (A111). However, my story is not about me and my studies, it is about my fight to improve the benefits system, whilst having to come to terms with my dad's diagnosis of an incurable disease.
In January 2019, at the age of 63 and after working all his adult life, my dad was forced to give up work as an HGV driver due to the loss of function in his hands.
Skip forward to June 2019 and after six months of undergoing rigorous tests and attending appointments, we received the devastating diagnosis that my dad had Motor Neurone Disease. We received a prognosis of two years maximum life expectancy and were told of the horrific symptoms that accompany the disease.
I immediately took the position of being my dad’s carer. Having such little time left, I knew the best thing that I could do would be to spend as much time as possible with him, providing us with memories to cherish and making sure he was as comfortable as could be. I continued to be a mother, to work and study, but all that aside, my dad’s welfare became my top priority. I was naïve in thinking that the time spent with my dad would be peaceful. Instead, it was continuously overshadowed.
My dad was in receipt of Universal Credit from leaving employment in January 2019 up to the point of his diagnosis. Naturally, upon diagnosis, we expected the usual requirements of providing sick notes and attending meetings to change. They didn’t.
After months of turmoil and attempts to resolve the situation, I had reached a point of despair. Even though we were finally settled financially, it played on mind that others would continue to suffer the same issues. I came across the Motor Neurone Disease Association’s “Scrap Six Month’s Campaign”, a that attempted to encourage a review of the benefit rules regarding the terminally ill. I decided to write about our negative experiences, in hope that it would aid the campaign and subsequently, raise awareness. The Motor Neurone Disease Association interviewed me and featured a piece on their website. The following February (2020), I was invited by them to attend an All-Party Parliamentary Group meeting, to provide a personal account of our experiences and the devastation it had caused. As nerve-racking as it was, I understood that this wasn’t about me and I had an overwhelming desire to do anything I could to help the cause, so I agreed to attend.
As daunting as it was, I felt it an honour to be a part of a campaign that I could contribute to. Additionally, it provided me with the relief of having the opportunity to be able to speak and to finally be heard. I managed to push through my emotive speech (though holding back the tears was a difficulty). A record twenty-eight MP’s and Peers from across all parties attended. It felt like an achievement, and although things were not going to change from my speech alone, I knew that the message was being delivered to the right people, which in turn could gain vital support to end the sufferings of those battling with the benefit system.
Within my speech, I quoted my Dad’s words:
‘Imagine being told that you are dying, that eventually you will be locked in your own body, like that isn't stressful enough without having to endure all the additional financial worries that Universal Credit adds to the terminally ill. It was degrading to feel that I had to beg for financial support from a system I had paid into most of my life. I felt abandoned and reduced to a number. The word ‘terminal’ should be enough. It should not be about time as no one can guarantee how long the terminally ill will live, regardless of the prognosis. The criteria for the terminally ill needs to change before more people suffer at the hands of this system. Our story is just one of thousands. I am fortunate enough to have had my daughter and family to fight for me, not everyone has that support, I feel for those who have to fight this alone’.
My dad’s speech had created such an impact, that it was quoted again in Parliament in July 2020, by Jessica Morden MP, when she presented a Bill to improve access to benefits for the terminally ill.
My dad lived to hear about my speech. He got to hear about the positive responses I received in Parliament and the sympathy they had for him. He then knew that his suffering had stood for something positive and that his story could contribute to positive change. Unfortunately, he didn’t live to see that change. He lost his battle four weeks later, in March of this year. He had survived nine months, not two years. As I have mentioned previously a prognosis is not definite and my dad is proof of that.
I believe that the additional stress my dad had to endure contributed to his rapid deterioration. I feel that the precious time we had left could have been better spent. I watched my dad suffer due to his disease and suffer because of the benefits system. The latter suffering was unnecessary.
Rebecca continues to strive to get her message amplified. Since submitting this article, she has been invited to participate in an online meeting organised by the Motor Neurone Disease Association with officials from the Department of Work and Pensions.