At NIHR CLAHRC Greater Manchester we recognise the outstanding contribution carers make to society each and every day and we value the important role they play in setting priorities for health and social care research. Since 2014, we have worked with a range of organisations, including charities and public sector teams on a national and local basis, undertaking research to help raise awareness of, identify and address the daily challenges and needs of carers, as well as those they care for.
To mark Carers Week, we wanted to put the spotlight on some of those issues and help raise awareness of what society and health and social care organisations can do to ensure carers feel recognised, supported and valued. With that in mind, we caught up with a member of our OSCARSS Carer Research User Group (RUG) who all have experience of stroke and caring for a family member who has had a stroke; meet Ben Wright…
Hello, my name is Ben Wright; I am 41 years old with a wife and four step-children. We have been married for 19 years and have two rescue dogs which I have worked hard to rehabilitate – that is my main hobby, as well as attending and participating in dog shows.
I am a full-time carer and have been since my wife’s stroke four years ago. Prior to that, I was a full-time industrial door and loading bay equipment specialist, travelling the country on a daily basis, working away from home some weeks.
- What is the most rewarding aspect of being a carer and what is perhaps the most challenging?
The most rewarding aspect is being able to help another human being, as well as further my own education & experience as a carer. The most challenging times have been dealing with my own faults and learning how to care for somebody else.
- Do you feel you have a good support network around you to fulfil your role as a carer and take time for yourself?
I spent two and half years being a carer whilst holding down a full-time job, which was extremely challenging at times. Business hours also made it impossible to get to speak to the people that offer support to carers and could help; when I got home from work other offices were closed for the day and I couldn’t take time off as I had used all holiday entitlements for time spent at the hospital, before it became clear I had to be at home 24/7, so I have had to create my own support network. It can be very difficult to take time for yourself but that is the nature of being a carer and having a support network does help.
- What organisation/s and/ or individuals have made a real difference in helping you to meet or overcome your daily challenges as a carer?
- How did you become involved in the OSCARSS project and the Carer Research User Group?
I became involved with the OSCARSS project after becoming a volunteer for the Stroke Association two years ago; they understood the trials and tribulations I had been through as a carer and felt the project was something I’d be interested in contributing my experience to.
- How do you think the project has benefited from carers being involved?
By collaborating with carers in this project, the CLAHRC research team has been able to draw on our first hand-hand experience; we know much better than someone sitting behind a desk exactly what it’s like to be a carer, what it involves on daily basis and the impact it can have on us and those we provide care for. We feel valued by the CLAHRC research team, who are keen to enable us to use our experiences to help others in a similar position.
- What have you gained from being involved in the project?
I’ve gained knowledge from other carers’ experiences, because no two carers roles are the same.
- Do you feel the role of a carer is often misunderstood or not fully recognised? What do you feel could help to change or improve that?
As a carer for a Stroke survivor, the role is a full-time job, within your own home. Everything you do revolves around the stroke survivor, you are unable to have a personal life as you once did – All too often that isn’t acknowledged by the professionals involved with Stroke rehabilitation, including your own GP, who look upon you as a professional carer rather than a husband who has taken on the carer’s role. That in itself is one of the most frustrating aspects.
The approach that we as carers have been working on as part of the OSCARSS project is based on life as we have lived it. In the future, we hope that all carers will be able to benefit from this approach, challenge perceptions and it make it easier for carers to understand that they can ask for help and what to ask for support with.
You can see Ben and learn more about the other members of the OSCARSS Carer RUG and their roles as carers by watching this short film. You can also find out more about our other research projects involving carers here.