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Life with MND is tough enough without being pushed into financial hardship.

People with MND are being forced to fund care themselves and wipe out their savings because:

  • Benefits and entitlements are not enough to cover the costs MND incurs.
  • Accessing financial support is too difficult and overwhelmingly complex to apply for and the system can also be too slow to respond. This is resulting in some people getting support when it’s too late, in some cases after the person with MND has died.
  • Not enough people are being made aware of the financial support they are entitled to.
  • Until now the cost of MND and the impact on people affected has been largely hidden, and not fully seen or understood by those with the power to change it.

We are campaigning to end the financial hardship faced by people with MND and their families.

Stories

Read the stories of Robert, Vivienne and Sean.

MND Costs - Robert's Story button
Read Robert's story
MND Costs - Viv's Story button
Read Vivienne's story
MND Costs - Sean's Story button
Read Sean's story

Campaign materials

House
Accessible housing
All-Party Parliamentary Group logo
All-Party Parliamentary Group (APPG) on MND

Latest news

Check out the latest MND Costs campaign news, events and blogs.

#Scrap6Months letter delivered on benefits system review

October 28, 2019

Fifteen clinicians have signed a letter to Thérèse Coffey, Secretary of State for Work and Pensions, demanding the Government deliver on the promise made by… Read more »

#Scrap6Months campaign update and DWP review

October 10, 2019

Three months ago today the previous Department for Work and Pensions (DWP) Secretary announced a review of how the benefits system supports those with terminal… Read more »

Labour proposes to scrap Universal Credit: MND Association response

September 30, 2019

The Labour Party has announced its intentions to scrap Universal Credit, the Department for Work and Pensions’ (DWP) flagship welfare reform policy. Universal Credit is… Read more »

New report calling for better access to housing adaptations for people with MND

September 26, 2019

People living with MND are becoming trapped in inaccessible homes due to a failure to deliver essential home adaptations, according to our new report. Terminally… Read more »

55,000 name petition arrives on the doorstep of Number 10

August 7, 2019

Representatives of the MND Association have presented a 55,000-name petition demanding the Government change the benefit rules for people with a terminal illness to Number… Read more »

MPs elected to parliamentary group on MND

July 18, 2019

  The All-Party Parliamentary Group (APPG) on MND held its AGM last week and elected the Officers for another year. Madeleine Moon MP (Labour, Bridgend)… Read more »

Our principles

What we believe good financial support for people with MND and their carers should look like.

  1. It must take into account the progressive, often rapid, and terminal nature of MND.
  2. People need to be provided with information about the range of financial support available to them and how to access it.
  3. People should feel able and comfortable to claim the benefits and entitlements available to them.
  4. Decision makers must recognise that some people of working age cannot work, and will never return to work.
  5. People should not lose out on financial support on the basis of their age.
  6. People should be exempt from unnecessary reassessments for benefits and entitlements.
  7. Services must take into account the fact that MND creates significant extra costs.

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262