As well as awareness, the week is also designed to help those who don’t necessarily identify as a carer but who have caring responsibilities, so they too can access support. This year’s theme is ‘Recognising and supporting carers in the community’.
The role of carers
Carers provide unpaid care and support to family or friends for a number of different reasons, which include disability, illness, mental health conditions, addiction or old age.
According to the 2021 Census, an estimated five million residents in England and Wales (aged five and above) provided unpaid care for someone in 2021, that’s around 8.4% of the people living in England and Wales – people who often do this on top of their ‘day job’.
Recognising carers in our MDUK community
We are extremely grateful to the carers within the MDUK community who work tirelessly for their friends and family unpaid all year round.
Earlier this year, as part of our 2022 President’s Awards, Gabby Logan awarded Emma-Jayne Ashley as Carer of the Year. Emma is a caregiver to her son Dregan, aged 23, who lives with congenital myotonic dystrophy. She acts as his personal care assistant and healthcare personal budget team manager.
Emma-Jayne says she has gained lots of expertise over time:
“To begin with it was really difficult to ask questions of experts, but then as we learnt more ‒ especially from working with Muscular Dystrophy UK (MDUK) ‒ we found we often knew things that those we were seeing didn’t.”
Emma-Jayne, like lots of carers in our community, goes above and beyond her caring responsibilities and also supports the wider care community.
The cost of living challenge to care
The cost of living crisis is affecting everyone, but especially those with lifelong, debilitating diseases such as muscle-wasting conditions and their carers.
A report published by Carers UK in October 2022, based on a survey of 13,000 unpaid carers, found that 1 in 6 (16%) of unpaid carers are in debt because of the impact of their caring role and their financial situation. Surprisingly, this increases to 2 in 5 (40%) for unpaid carers in receipt of Carer’s Allowance.
Ian Poulter, the father of John, aged 33, who lives with Duchenne muscular dystrophy, details the financial struggle faced as an unpaid carer:
“Caring for a family member can represent a real commitment in terms of time, energy and finances. This can increase as time goes by when caring for a child with a progressive condition who then becomes an adult with that condition."
“Those who need care cannot always contribute to the costs of running a household but still require those same services we all do. Means testing can result in further financial pressure for families looking after loved ones.”
We understand that this is a worrying time for people living with muscle-wasting conditions, their families, and carers. If you have questions about the cost of living, and want to know about what help is available in your area, the MDUK Information, Advocacy and Care team are available on 0800 652 6352 or info@musculardystrophyuk.org to offer information and support.
We also have a Local Support page with a list of schemes and support available specifically in England, Scotland, Northern Ireland and Wales. There may be further local support available depending on your area.