Support MND Carers logo

Carers need support - and we want to help them get it

Support MND Carers

The Support MND Carers campaign is calling 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.

Carer's assessments are a legal right but research from the MND Association has found too many unpaid carers are not aware of them or have found them to be inadequate.

We recently published a report that found:

  • Only 25% of carers of people with MND had either received a carer’s assessment or were in the process of having one
  • 40% were unaware of their right to a carer’s assessment
  • Carers felt that assessors lacked understanding of MND and the full impact of providing care on the carer
  • 70% of carers have not had assessment/support plans or re-assessments/reviews of their needs
  • Of those who did receive a carer’s assessment, 30% reported that they had not received any extra support as a result.

Our recommendation:

Government should conduct an urgent review of carer’s assessments, with a particular focus on improving awareness, availability and access.

Assessments help to identify the needs of carers so that they can be offered the appropriate services and assistance to feel supported within their role.

It is not acceptable that high numbers of carers have not received a carer’s assessment, leaving them without access to vital support.

If you would like to make your MP aware of this campaign, use this form

Email your MP

Mary's Story

Mary is a carer for her older brother, Gary, who is living with MND. Mary juggles being a secondary school teacher with caring responsibilities.

Mary told us

"It was difficult to digest and accept the diagnosis. I found it difficult to reorganise my life between being a carer, a mother and working full-time as a teacher. At one point I was so overwhelmed that I broke down at work, unable to accept what is happening to my family. My life now is controlled by MND."

Mary has not been offered a Carer's Assessment and on the lack of support Mary said:

"There’s no one coming into check if there’s anything that’s needed, it’s all on me to do that. I’m running around doing everything. You have to have so much patience. I’m all alone, there’s no one near to take over from me when I need help."

Support MND Carers - Mary

Get involved

Everyone caring for people with MND should be properly supported for the care that they provide. Help us make that a reality by getting involved. 

Support MND Carers background
There are no services available. Any respite is non-existent. I had a carers assessment in which I apparently scored highest in every area and was then told I could have £150 to spend on myself. What use is that? Carer

Support and Information

If you are a carer or support someone living with MND, you can access help as care needs increase. Click the link below for support and information available to you.

How to get help

* Carer’s assessments cover topics such as carers’ mental and physical health, their ability and willingness to care, and their relationships with others. They are the responsibility of local authorities in England, Wales and Scotland, and of Health and Social Care Trusts in Northern Ireland.

The Care Act 2014 in England gives anyone aged 18 years and over - who is looking after another adult who is disabled, ill or elderly - the right to a carer’s assessment. In Northern Ireland, the Carers and Direct Payments Act (Northern Ireland) 2002 gives carers the right to an assessment. In Wales, the right to a carers assessment is provided through the Social Services & Well-being (Wales) Act 2014. In Scotland, it is provided through the The Carers (Scotland) Act 2016.

Support MND Carers – Resources for Supporters

Click the button below to find some resources that you can download to better understand how you can get involved in the Support MND Carers campaign. It includes things like our Action Guide and Frequently Asked Questions document.

Resources for Supporters

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262