I am one of 7 million unpaid carers in the UK. I care for my husband full-time. He has a rare form of motor neurone disease called Kennedy’s Disease. He’s losing the ability to walk, to breathe and to swallow.
I didn’t have caring in my life plan, but then who does?
I regularly meet people who have not been identified as carers. They see themselves as partners, siblings, friends and neighbours, but crucially they do not recognise themselves as carers.
I didn’t know I was a carer.
I thought I was simply a wife with a poorly husband. It wasn’t until I was told in a meeting that I was Mark’s carer that it hit me. That was the term that defined me.
In 2016 I took part in a government consultation. The then Minister for Care wanted to have carers’ views on what their lives were like. I readily took the opportunity to say what the impact of caring had been on me. I had gone from earning £150 a day as a teacher, to caring for my husband, claiming Carers Allowance totalling £64.60 a week. I encouraged other carers to take part in the consultation as I thought the more carers who took part the greater the understanding of our role.
We were promised a Carers’ Strategy and we waited. There was a snap general election. The election brought a new Minister. No one seemed to be concerned that there was no news about the Carers’ Strategy. I felt my precious time, and that of my fellow carers had been wasted on the consultation. It made me think that our contributions were not worth anything to the civil servants and to government as a whole.
It was at this point I realised carers could use their own voices to campaign on their issues. I volunteer with a charity as a campaigner.
It has taught me two powerful lessons.
Firstly, that our personal stories are the most powerful testimony. Secondly, that you can achieve change if you just believe you can.
In January 2018 I created a petition calling on the government to publish their promised, and long-awaited Carers’ Strategy. This was nearly 2 years after the announcement of their original consultation.
By this time, we were on our third Minister for Care since the Carers’ Strategy consultation began.
So, in April 2018 I founded the We Care Campaign, with the help of some of my friends. We created infographics, videos, logos, badges, and held a launch event in Canterbury to raise the profile of the campaign. We invited local carers to the launch where they could discuss their issues with the Canterbury MP, Rosie Duffield. Some carers had never met their MP before, nor had the opportunity to explain their worries and concerns.
During Carers’ Week we hosted the Shadow Minister for Social Care, Barbara Keeley, in a twitter question and answer session. It was important to create an event that gave carers who were at home an easy opportunity to make their voices heard, and ask questions directly of Barbara. It was a real digital coup and got the attention of bigger charities. It’s amazing what can be achieved with no budget, as long when you have amazing volunteers, supporters and allies.
What I hadn’t expected during the We Care campaign was that it would galvanise carers’ support organisations from across the UK to start campaigning for a Carers’ Strategy. All were fed up waiting for Government to act. The petition was featured on carers’ support organisations’ websites, and in their online publications. Carers across the UK wrote letters to their own MPs, and met their MPs. People got behind the campaign petition and started sending it out to their friends and families. Social media was utilised as well as local radio and newspapers. The petition closed with 2,124 signatures.
But more than just the numbers, we ended with a movement of people up and down the country who will continue to join our call to get carers valued.
We want to see what can be done to increase Carers Allowance valuing the contributions of unpaid carers. From this summer, carers in Scotland receive £8 a week more than carers in England, so care is valued differently. We must also seek to make sure all carers are identified so they can access support and know their rights.
If you are a carer join our Facebook group search We Care Campaign and join our twitter @WeAreCarers for updates.