Carers need support - and you can help them get it

The Support MND Carers campaign is calling on the Government to increase the rate of Carer’s Allowance to a level that reflects the real value of unpaid carers.

The Government should also address strict eligibility requirements by removing the earning threshold, reducing the minimum time-spent-caring condition, and removing the limited eligibility rules if a person is cared for by more than one person.

There are thousands of unpaid  carers of people with MND, and many of them face financial hardship because of their caring role:

  • 47% of unpaid carers report worrying about money.
  • Almost half (49%) report that caring had caused them financial difficulty.

Increasing the rate of Carer's Allowance would make a huge difference to these unpaid carers. 

Read more in our 2022 report Understanding the experiences of unpaid carers of people living with MND.

Read the Support MND Carers report (2022) here

Carer's Assessments

We’re also calling on local authorities to do more to support MND carers. One way they can do this is through improving carer’s assessments*.

Assessments are the front door to the support that are available for unpaid carers. They help to identify what carers need, so that they can be offered the appropriate services and assistance  to continue in their caring role.

It is not acceptable that countless carers across the UK have not received a carer’s assessment, leaving them without access to vital support.

Carers’ assessments are a legal right but research from the MND Association has found too many unpaid carers are not even aware of them - or have found them inadequate.

On Carer’s Rights Day we launched our latest findings in the State of Carer’s Assessments 2023 report. If you’d like an accessible version of the report, please email us.

The report reveals many local authorities are unaware of who is an unpaid carer in their area, with almost one-third not holding a register of carers. We estimate that councils are only identifying between 6-13% of carers in their local area. Without understanding how many carers there are in their areas, they will not be able to put in place effective support for those that need it.

More from the State of Carer's Assessments Report

In our report we also detail the long wait for a carer’s assessment. Between 2018 and 2023, people waited on average between 42 and 47 days for a carer’s assessment to be carried out once it was requested. For a disease like MND, where needs can change dramatically over a short period, this is too long. 

But in some places, it’s even worse, with people in some local council areas waiting over a year to receive an assessment. This postcode lottery for MND carers is unacceptable.

Finally, the report shines a light on where best practice isn’t being delivered for people with MND:

  • 71% of local authorities do not routinely reassess carers of people with severe progressive diseases like MND – reassessments ensure that the level of support can change with their needs.
  • 82% of local authorities do not have fast-track routes to assessment in place to account for the progressive and fast-changing nature of MND symptoms.
  • 85% of local authorities do not have ringfenced budgets for carers’ assessments which would ensure guaranteed funding for these assessments.

Read the State of Carer's Assessments report (2023) here

Write to your councillors

We’re asking you to write to councillors to share the report and ask what measures the local authority (or Health and Social Care Trusts in Northern Ireland) have in place to ensure that carers, including carers of people with MND, are identified and their needs assessed.

Guide to writing to your councillors

Step by step guide

Step 1: Find your councillors here. If county councillors are listed, select them. If not just select your councillors.

Step 2: Copy the email text below. Make sure you include your postal address in your email so that your councillors know that you live in the area they cover.

Step 3: Please personalise your email by adding your experiences of MND as this may make your councillors more likely to respond. Then click send.

Remember to let us know if your councillor responds by forwarding their response to [email protected]

Text for councillors in England and Wales

Dear Councillor,

I am emailing you as a constituent to highlight findings from the new report from the Motor Neurone Disease (MND) Association about carer’s assessments.

I am urging you to share the report with the councillor responsible for adult social care and ask them what measures they have in place to ensure that carers, including carers of people with MND, are identified and their needs assessed.

As you may know, MND is a fatal, rapidly progressing disease that affects the brain and spinal cord. MND leaves people locked in a failing body, unable to move, talk and eventually breathe. Six people a day die from MND in the UK.  

Caring for somebody with a complex and progressive disease like MND is an enormous responsibility which impacts carers in multiple ways. It is often family who take on the bulk of caring responsibilities.

Research conducted by the MND Association as part of their Support MND Carers campaign has found local authorities are often unaware if someone is a carer. Only two thirds hold a register of carers in their area. And where there is a register, the MND Association estimates that local authorities are still only identifying between 6-13% of carers.

Without understanding how many carers there are, local authorities will not be able to put in place effective support for those that need it.

You can read the report in full here: https://www.mndassociation.org/sites/default/files/2023-11/State%20of%20Carers%E2%80%99%20Assessments%20report%202023.pdf. 

Thank you in advance for sharing this information and helping me understand how carers are identified and supported.

Best wishes,

[ADD NAME]

[ADD ADDRESS]

Text for councillors in Northern Ireland

Dear Councillor,

I am emailing you as a constituent to highlight findings from the new report from the Motor Neurone Disease (MND) Association about carer’s assessments.

As my councillor I am urging you to share the report with our local Health and Social Care Trust and ask them what measures they have in place to ensure that carers, including carers of people with MND, are identified and their needs assessed.

As you may know, MND is a fatal, rapidly progressing disease that affects the brain and spinal cord. MND leaves people locked in a failing body, unable to move, talk and eventually breathe. Six people a day die from MND in the UK.  

Caring for somebody with a complex and progressive disease like MND is an enormous responsibility which impacts carers in multiple ways. It is often family who take on the bulk of caring responsibilities.

Research from the MND Association as part of their Support MND Carers campaign has found Health and Social Care Trusts are often unaware if someone is a carer. Despite all trusts holding carers' registers, only 6% (13,925 people) of the total carer population of Northern Ireland (c.220,000 people) are on these registers. Trusts cannot support carers if they are not aware they exist.

You can read the report in full here: https://www.mndassociation.org/sites/default/files/2023-11/State%20of%20Carers%E2%80%99%20Assessments%20report%202023.pdf. 

Thank you in advance for sharing this information with our local Health and Social Care Trust and helping me understand how carers are identified and supported.

Best wishes,

[ADD NAME]
[ADD ADDRESS]

Support and Information

If you are a carer or support someone living with MND, you can access help as care needs increase. Find out more about support and information available to you

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.

"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
Image Image of Mary

Mary has not been offered a Carer's Assessment.

"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."

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. 

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Past work on Support MND Carers

November 2022 - September 2023

We launched the Support MND Carers campaign in November 2022. We worked with hundreds of you to call 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.

The Government included provisions in the Health and Care Act 2022 for the Care Quality Commission (CQC) to assess the performance of local authorities’ delivery of their adult social care duties – including carer’s assessments. We understand that these assessments will happen piecemeal over a number of years from September 2023 and can now consider how best we can engage with this process or its outcomes.

*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.