This Carers Week, we're coming together to make caring visible and valued, and are sharing your stories and experiences.
Many people with MS will need care from friends and family at some point. Our ‘My MS My Needs’ survey shows 4 in 10 people living with MS rely to some level on unpaid care and support from family and friends. And 7 in 10 don't get any extra support from their local council or government.
Even before the start of the COVID-19 pandemic, many carers were going without the right support or recognition.
COVID-19 piles on the pressure for carers
Now, the coronavirus crisis has put even more pressure on carers.
We’ve heard from people with MS who've felt they have to cancel paid care, to protect themselves from people coming into their home.
We know some of you may have had your care reduced by your local authority, or that your carers aren’t available due to being unwell or isolating. The result is that family or friends who provide care are less able to have a break.
This means that support for carers is more needed than ever.
We’re campaigning for more support for carers
We’re calling for UK governments to increase Carer’s Allowance. We're raising it in questions to ministers and parliamentarians. And we're working in collaboration with others, like writing to the Welsh Government with the Wales Carers Alliance last year.
In May 2020, we also joined with more than 100 other charities and unions to write to MPs, urging action to reduce the financial pressures unpaid carers face.
We were pleased to see the Scottish Government make a one-off payment of £230.10 to eligible carers through the Carer's Allowance Supplement, recognising the extra pressures of coronavirus. But this top-up shouldn’t be needed. The right level of support should be provided consistently in the standard Carer's Allowance for carers across the UK.
In Scotland, the Scottish National Party (SNP) manifesto committed to doubling the supplement from December 2021. And they've committed to replacing Carer’s Allowance with Carers Assistance, with increased value.
We’re also pleased to see the Welsh Government launch a respite and short breaks fund of £3 million, to enable unpaid carers, family and friends to get the support they need.
Through the pandemic we’ve also called for carers to have access to personal protective equipment (PPE) and testing, to help keep them and the people they care for safe. We’re pleased testing is now widely available, and there's now guidance published on accessing PPE.
We want to hear from you
It’s not just about giving unpaid carers the right resources. It’s also vital that care and support services are reinstated for carers and their families as soon as possible.
We also know that many carers report struggling financially, which can lead to an impact on mental health. And it can mean they're unable to take part in leisure activities or take a break from their caring role. We’re working to try and make sure there’s better support available for carers.
If you’d like to share your experiences of caring or supporting a family member or friend living with MS, please get in touch. This helps us campaign together and speak up for our whole community.
This blog was first published on 9 June 2020. We updated it on 10 June 2021.