The Day A Wife Made A Difference
My husband’s body is slowly failing him. He has a rare progressive form of Motor Neurone Disease called Kennedy’s disease and has gone from being physically active to depending on crutches and a wheelchair to get around. At night he breathes with the help of a machine that supports his weakened chest muscles.
Few people have heard of Mark’s disease, let alone understand what it is like to live with it. We wanted to change that, so Mark and I decided to volunteer for the charity Motor Neurone Disease Association as campaigners. We raise awareness of the disease and try to create change at a local and national level.
In November last year Mark and I were asked to speak to the All Party Parliamentary Group (APPG) on Motor Neurone Disease, when the welfare reform and work bill was being debated. Like many others, we were worried about the impact of the bill on disabled people and their carers. We know how important it is to have sufficient financial support when living with an increasingly expensive condition, and what it would mean if this support was cut.
So, we told the MPs our story. We told them about how we were once two professionals and how our lives had been devastated by Mark’s condition. I explained that as a teacher I had earned £150 a day and now I receive £62.10 a week in carer’s allowance for providing never ending care and support for my husband.
Mark explained how he was forced to retire at 46, that our income had fallen off a cliff, but our bills continued to increase. He told the group about how we travel miles and miles to receive care and how we had to make adaptions to our home which were paid for with savings that we will never be able to replace.
As we continued to speak, I realised that the number of MPs in room was growing. We had been warned that they would come and go due to their busy diaries, but it became clear that they were staying to hear all of our testimony. You could see it in their faces that they were thinking about how they might cope in similar circumstances and as they sat there some were emailing and texting their ministers to meet and discuss what we had said. Some were even tweeting.
A few weeks later Madeleine Moon, chair of the group, spoke about our visit during a Westminster Hall debate on neurological conditions. She mentioned us by name and our experiences with Kennedy’s Disease. We realised that this was the first time Kennedy’s Disease had ever been mentioned in a parliamentary debate and the first time it has been recorded in Hansard. This is some legacy. It proved to us the power of a personal story and how you can make a difference using your own words.
We still have work to do. The Welfare Reform and Work Act is now law, which means that people with Motor Neurone Disease who claim Employment Support Allowance will lose out as a result of the four-year benefit freeze. But people who get carer’s allowance will no longer have their benefits capped. There are wins and losses. Our campaigning work continues.