The value of co-production
Just before my father died he asked me to look after mum. That promise always stuck in my mind.
When Dad died, Mum began to depend on me more. As a retired nurse, I’ve been in the caring profession all my life. It seemed natural that as Mum needed more support, I stepped into the role of main carer. I felt that because I had the knowledge and experience, I also had the responsibility.
Small jobs became bigger ones as her health deteriorated. Eventually she was diagnosed with vascular dementia. You don’t think about the moment you go from daughter to carer. It doesn’t really register, because you’re just doing what you’re supposed to do. It was a gradual process, a dripping tap that fills a bowl so slowly that you don’t notice it happening.
Being a carer is not easy. It surprised me, even with all my experience, how hard it is. It’s not like being in a professional role because your shift never ends. This is your family, someone you have a relationship with, and it makes the job much more demanding emotionally. You lose a bit of your confidence anyway when you stop working. When you’re a carer too, you start to question yourself, wondering whether you’re making the right decisions, whether you are doing enough, whether you should be doing more. No matter how much you do or how much everyone reassures you, you feel guilty all the time.
It was my friend Maggie (who has also blogged here before) who suggested I join Herefordshire Carers Support. I did a carers training course once a week for five weeks on caring for someone with dementia, and it was the best thing I could have done. It was a small friendly group. Straightaway there was a rapport because of all our various caring experiences (some familiar and others almost inconceivable), and it was noticeable how the group rallied around each other, how supportive everyone was.
It was Herefordshire Carers Support who asked Maggie and I if we would be interested in taking part in the Research in Practice for Adults (RiPfA) workshops bringing carers together from across the UK to help develop learning resources to support social workers in their work with carers. The workshops were the start of something new for me, although I didn’t know it at the time. The two sessions focused on developing case studies based on our experiences, and compiling a resource with guidance on what to do, what not to do, and what is important for carers.
Not long after, Justine Collom, who was part of the project group, wrote a blog - Carers – let’s talk about you. When I read it, I realised that we’d really helped, really made a difference. It gave me a real lift and the confidence I needed to go on to write a piece for Herefordshire Carers Support magazine, as well as attending and speaking at the RiPfA conference about strengths-based working.
My message for social workers at this meeting, was that it is crucial to talk with as many carers as you can, to understand their innumerable problems and situations and experiences. Listen and use what they’re saying to improve practice. And listening goes beyond hearing people speak. Use all of your senses to pick things up, because with carers especially, people who ‘don’t like to make a fuss’, the unsaid things are important too.
Slowly, through this work, I’ve got my confidence back. Being part of that group will hopefully lead to better social work with carers, but it has been useful for me too. It enabled me to find my voice, to see myself beyond my caring role. And I know that getting involved with these things on a wider scale is ultimately supporting other people like me and my family.
It’s also been hugely valuable to be involved with Herefordshire Carers Support. Without them I wouldn’t have heard about the workshops and having access to other carers makes a huge difference. I think that there are many carers out there struggling on alone, and I know that having the support of other people with the same experiences really helps. Maggie and I feel that not all carers are provided with the opportunity or time (due to their caring role) to have their say, and that this is a community that we need to try to pull together. We believe that social workers can play a part in this by encouraging carers to join local support groups and get involved with the kind of projects like RiPfA’s that will help them to rediscover their confidence and sense of self.
About the author
Marion Stevenson is a retired nurse, wife, mother, daughter, grandmother of ten, and sister. She is also a carer. Marion and Maggie are available to speak to groups or organisations about the role of carers and how social workers can effectively support this group of people. For more information, contact email@example.com.