Home News and Events Latest News Meeting with the Minister for Disabled People, Health and Work

Meeting with the Minister for Disabled People, Health and Work

Chris James, Sarah Newton, Emma Adams

On Tuesday 6 February, the MND Association met with Sarah Newton MP, the Minister for Disabled People, Health and Work at the Department for Work and Pensions (DWP), to discuss the issue of benefits reassessments for people living with MND, and call for a solution for current ESA claimants.

Emma Adams, a trustee and supporter of the MND Association, attended the meeting. Emma has personal experience of supporting her husband Simon, who is living with MND, through reassessments for benefits including Employment and Support Allowance (ESA).

Emma said:

‘It was an invaluable experience meeting Sarah Newton MP. I took the opportunity to outline the agonising process my husband Simon had to go through when being reassessed for ESA last summer, she listened and was very sympathetic about the stress this puts on a person with MND and their family.’


As MND is a progressive and terminal condition in all cases, unnecessary benefits reassessments cause significant stress and anxiety to claimants and their families, and are a waste of resources. This meeting followed ongoing work with the DWP on the issue of reassessments for ESA claimants living with MND who qualify for the highest level of support.

We ran a 2017 general election campaign in which 607 parliamentary candidates pledged their support for an end to ESA reassessments for people with MND. During the summer of 2017, our campaigners and people with MND from across the country met with MPs to share their stories of the financial impact of MND, and call for an end to benefits reassessments.

This engagement led to the DWP’s announcement in September 2017 of a new severe conditions exemption for ESA, which applies to all new higher-rate ESA claimants with a progressive and terminal condition. We expect that everyone living with MND who qualifies for higher-rate ESA and claims for the first time will be exempt from reassessment.

Unfortunately, the exemption does not apply automatically to those who were already claiming ESA by the time the exemption was introduced. These people will need to undergo a final paper- based reassessment to receive exempt status.

Outcomes of the meeting

We would like to thank Sarah Newton MP for taking the time to meet and listen to our concerns. The meeting gave us the opportunity to explain why the reassessment process is so difficult for people living with MND, their carers and families. We would especially like to thank our trustee Emma Adams for sharing her experience, which gave a clear picture of the issues faced by people living with MND during the process.

Daniel, Emma and Alex with box of signaturesWe also presented the Minister with an open letter calling for an end to ESA and other benefit reassessments including Personal Independence Payment (PIP) for people living with MND, signed by 8,000 supporters.

The Minister expressed her sympathy for our concerns and acknowledged that the reassessment process may be burdensome for some people living with a progressive and terminal condition such as MND.

The Minister assured us that she was committed to continuing to improve the systems and processes around ESA reassessment, and reducing the distress and anxiety this may cause for people with conditions such as MND.

The Minister explained that currently there are complex operational and system issues that need to be reviewed prior to a solution being found, and was unable to commit to an immediate solution to end all reassessments for current ESA claimants living with MND.

Next steps

We agreed several next steps arising from the meeting:

  • The MND Association will participate in a DWP review process this year to assess the progress and effectiveness of the ESA severe conditions exemption for new claimants so far.
  • Following these discussions we will have the opportunity for a follow-up meeting with the Minister on the issue of reassessments for ESA claimants living with MND whose claim began before October 2017.
  • The Minister also committed to responding to the open letter we presented on behalf of the Association’s supporters, and we will share the response as soon as we receive it.
  • The Association will continue to share the experiences and concerns of our supporters with the DWP to improve their understanding of the impact of reassessment processes on people living with MND, their carers and families.

In the meantime, if you are sent an ESA50 form for an ESA reassessment:

  • Contact our Benefits Advice Service for advice and support on navigating the reassessment process.
  • Please be aware that if you do not respond to a request for a reassessment, you will lose your entitlement to ESA.
  • We would like to hear more about your experience of ESA reassessment in order to ensure that the DWP understands how the process is affecting claimants, carers and families. Please contact campaigns@mndassociation.org to tell us about your experience of being reassessed for ESA.


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