Our Commitment to Carers

The Motor Neurone Disease Association has made its first ever ‘Commitment to Carers’ following an increase in demand for support and information during the coronavirus pandemic.

The charity has committed to developing new support for people who care for a loved one with motor neurone disease, with a focus on digital and online platforms. One-to-one support, peer group meetings and on demand access to information all feature in the ‘Commitment’.

At the onset of the global pandemic, the MND Association began contacting everyone with the rapidly progressing, terminal illness on its database. It quickly identified concerns from carers of people with MND about where to find information and support with current restrictions in place.

Staff and volunteers making the calls also recognised a need among carers to be able to access end of life and post-bereavement support. Even without the complication of coronavirus, six people die of MND every day. Like thousands of other grieving families they have only been able to hold the most basic of funerals.

Chris Bennett, Head of Region (West) at the MND Association said:

“Figures released in Carers Week show that the number of people caring for loved ones in the UK has jumped almost 50% during the pandemic from 9.1 million to 13.6 million. We believe that increase has been reflected in the MND community with more people with MND relying on loved ones to support them as they are shielded at home.

“It became clear to us as we were speaking to people with MND and their families that there were new pressures on carers – concerns over shielding loved ones with MND, financial pressures from being furloughed, feeling isolated from family and friends, problems with access to paid care. And of course we had to stop our volunteers who provide support and help from visiting them too.

The Association has listened to what carers and service providers have told us to develop a plan to introduce new ways of supporting carers and giving them access to vital help.

The Association’s Commitment to Carers pledges:

• To provide support to help you cope with caring for someone with MND
• To offer opportunities to relieve isolation and improve wellbeing and resilience
• To help you access services and support provided by others

And for those who need it …

• To help cope with bereavement and loss

Download our Commitment to Carers (English PDF)

Download our Commitment to Carers (Welsh PDF)

The charity's priorities now are to develop a programme of online targeted support groups, events and on-demand resources; and to mobilise and recruit more volunteers to provide one-to-one support, facilitate groups and compile useful information.

The first of these activities, a virtual relaxation session and a virtual support meeting, are being kicked off this week, in Carers Week, with more now being organised.

The Association will also continue to provide carers grants. Last year 267 carers were given grants totalling almost £110,000 enabling them to take a short break from caring duties perhaps by enjoying a pamper or hobby day, when restrictions allow. And consideration will also be given to the further use of social media support and delivery of wellbeing support from partnership organisations.

Chris said:

“We are proud to have been able to mobilise our staff and volunteers so quickly to provide the immediate support people with MND and their carers needed as the pandemic took hold. We are now looking to utilise our learnings to ensure that in the coming weeks and months those people continue to receive the support, help and advice that has proved so valuable to them.”