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Putting carers on the map

In aid of Carers Week, we’re recognising the challenges that many unpaid carers in our community face and what changes we want to see the new government make to support unpaid carers.

Carers Week is an annual campaign that aims to raise awareness of the invaluable contributions carers make to the community, as well as acknowledge the sacrifices that many unpaid carers have to make to support their loved ones. This year’s theme is ‘Putting carers on the map’ to ensure that increasing support for carers is seen as a priority in the upcoming general election.

Unpaid carers in the muscle wasting and weakening community

A large number of people in our community care for their loved ones who have a muscle wasting or weakening condition. There can be a variety of reasons for this, including: not qualifying for any/enough paid carers, a lack of paid carers in the UK, needing to step in if a paid carer becomes ill or needs training, the individual feeling uncomfortable with having a stranger provide personal care, and others.

A study released for Carers Week this year has revealed that 62% (around 10 million) of unpaid carers have taken on this role because there was no other support offered.

Friends and family provide the same level, or often more, care as paid carers, yet rarely qualify for the financial or emotional support that paid carers receive. The report outlines the main concern being around mental health. 63% of unpaid carers said that it has had a negative impact on their mental health. Other highly concerning issues unpaid carers face are a decline in their physical health (53%), their ability to work (48%) and financial security (47%).

Things need to change

We recognise the strain that being an unpaid carer, as well as having to be cared for by a loved one who is unpaid, has on our community. We see you and support the call on the government to do more to change the system. This includes providing more support for unpaid carers and investing in social care funding so that more people with muscle wasting and weakening conditions qualify for paid carers.

Recognising carers in our community

Earlier this year, William Jackson won our 2023 Carer of the Year President’s Award. Despite being just 16 and currently sitting his GCSE, William provides support for his younger brother, Louis, who has Duchenne muscular dystrophy.

He spoke about what winning the award meant to him on the night, “It means a tremendous amount and it feels honestly amazing. It means a lot to represent the siblings who might not be the priority because of their brother or sister’s additional needs. I help Louis on a day to day basis, but also help my mum and dad and little sister as well. Helping around the house as many would do, but then taking on additional roles for Louis.”

Caring is an ongoing job

Family members are often still unpaid carers even when the individual has a care package.  

“Caring for my son, John, who lives with Duchenne muscular dystrophy and has complex care needs means I constantly have to be available. Rearranging my plans around his paid carer’s schedule and stepping in if they lack the skills he requires. Despite the challenges, John’s care always has to take priority over any plans we may have to help him enjoy life.” Susan, mum to John, who has Duchenne muscular dystrophy. 

Reaching out

We understand that being a carer can be challenging and create worries in other areas of your life. You can see what support is available for you on our carers page. Our helpline team are also here for you to answer any questions and provide advocacy support. Please contact us on 0800 652 6352 or info@musculardystrophyuk.org.

William highlights that there’s often many unpaid carers that tirelessly help someone with a muscle wasting and weakening condition, not only parents.

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