Support MND Carers campaign

Since the launch of our Support MND Carers campaign last autumn, more than 1,000 of you have written to your MP, backing our call for a government review of carer’s assessment. That’s led to 30 MPs taking practical action to improve support for carers. Now we are asking for your help to raise awareness of carer’s assessments locally.

A carer’s assessment is the first step to getting help, as Kuai Peng Wong found out when she completed an assessment as a carer to her husband KT, who is living with MND. Kuai Peng said: “My husband, KT, had a very good social worker who referred me for a carer’s assessment. I had one in 2017 and they offered me things like respite and a grant to do whatever I wanted. And then another one was done over the phone during covid, where I received another grant. I recently arranged for another assessment to be done as KT’s condition has changed since then.”

Yet our report, published last year, revealed only 25% of carers of people with MND had received a carer’s assessment or were in the process of having one. Like many carers of people with MND, Pat Johnson who cares for husband Miles, has found it hard to access adequate support. “I phoned up about a carer’s assessment and they told me it could take weeks or even months before I got an assessment. They said I’d have to attend an appointment which could take up to two hours and they do not do home visits, meaning I would have to leave my husband at home. They’ve told me I will be put on a list, but I’m not optimistic that there is any support they can offer me.”

Our Support MND Carers campaign calls on the Government to launch a review into why carers aren’t being assessed and why, when they are assessed, recommendations from the assessment are not being carried out.

MPs have taken actions including writing to the Health Secretary, Steve Barclay, submitting parliamentary questions and writing to local authorities in their constituencies highlighting findings from the carers report.

Influencing local support

We’re now asking you to focus on helping us to raise awareness of carer’s assessments locally. You can do anything from sharing our carer’s assessment infographic on your social media, to organising a meeting with your local councillors. Scan this QR code or visit www. mndassociation.org/ supportmndcarers to see what you can do to make a difference.

Promise 2

WE WON’T REST UNTIL EVERYONE GETS THE CARE THEY NEED WHEN THEY NEED IT

Carers Week

Carers Week in June provided us with another opportunity to highlight the challenges unpaid carers face. At a roundtable with Minister for Social Care, Helen Whately, we discussed how we can work together to ensure carers are supported in the community. We also joined two MND carers, David and Kuai Peng at a roundtable event with Ed Davey MP, leader of the Liberal Democrats and Liz Kendall MP, Shadow Minister for Social Care.

Caring for the carers

While we continue to lobby and call on the Government to do more for carers, the MND Association supports MND carers through our range of awardwinning information resources, grants programme and dedicated in-person and virtual support groups.

Zoe Sumner Welch received a carer’s grant after her husband, Mike, who she met on Channel 4’s First Dates, was diagnosed with MND. She said: “The MND Association gave me a grant which paid for most of my driving lessons, enabling me to get my test done, and now I can drive Mike around. Without that support, it would be a lot harder for us day to day.”

Find all our information and support for carers, including information about the Carers Assessment, on our Carers Hub: www.mndassociation.org/carers