MND Guarantee

Dear [insert MP's name]

I am writing to you as a constituent to ask if you would please become a member of the All-Party Parliamentary Group on Motor Neurone Disease (MND) at the inaugural meeting on Tuesday 26 November from 11am to midday in the Jubilee Room, Westminster Hall.

As you may be aware, MND is a fatal, rapidly progressing disease that affects the brain and spinal cord. It kills a third of people within a year of diagnosis and more than half within two years. 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.  

There is no cure.  

This year marks the 22nd anniversary of the APPG on MND. Over the years the APPG has been key in raising issues affecting the MND community. The APPG on MND helped to secure a government pledge of £50 million for targeted MND research, as well as legislative change to fast-track access to benefits for those who are terminally ill.

It is vital that the MND community continues to have a strong voice in Parliament, and I would greatly appreciate your support to re-establish the group.

The inaugural meeting will take place on Tuesday 26 November from 11am to midday in the Jubilee Room, Westminster Hall.

Please RSVP to the Group’s secretariat on [email protected] if you plan to attend and if you would like to be added as a member.

This is incredibly important to me, and other constituents affected by this devastating disease. I really hope you’ll be able to attend the meeting to hear about the progress that is being made to find a cure for those living with MND.

Best wishes, 

[Insert your name]

[Insert your address so the MP knows you live in their constituency]

Dear [insert MP's name],

Huge congratulations on being elected as MP for [insert constituency].

My name is [insert your name] and I'm writing as a constituent and supporter of the Motor Neurone Disease Association. [Describe any connection with MND or with the Association you feel comfortable sharing.]

Motor neurone disease (MND) is a fatal, rapidly progressing neurological condition affecting more than 5,000 adults in the UK at any one time. MND kills a third of people within a year and more than half within two years of diagnosis. A person's lifetime risk of developing MND is around 1 in 300. There is no cure.

We have five priorities for this parliament ranging from accessible housing, access to treatments, and improved cost of living support, to sustainable social care and support for MND carers. You can read our five MND asks of the new government here.

I would appreciate the opportunity to meet with you and a representative from the MND Association, to help you understand a bit more about how this devastating disease impacts people and how you can support constituents living with and affected by MND locally.

We're committed to finding a cure for MND but until that day, and with your help, we hope to continue to work to ensure legislation works for everyone living with and affected by MND.

Best wishes,

[Insert name]

[Insert your address so the MP knows you live in their constituency]

We need a major change in the way adaptations are provided in the home for people with MND. Too many are living in unsuitable and unsafe housing. We are asking local authorities to remove the red tape and fast-track assessments for people with MND for these adaptations; as well as for the government to consult on increasing the upper limit of a Disabled Facilities Grant and revising the means test.

This parliament will be a critical period for MND research, with unprecedented levels of research activity to develop new disease-modifying and life-extending drugs for MND. Now is the time for sustained investment and support to bring these drugs to those who need them.

People with MND have been hit disproportionately hard by the cost of living crisis, especially regarding energy bills. We are asking for targeted support including a rebate on electricity costs for equipment used in the symptomatic care of MND and a reversal of eligibility changes to the Winter Fuel Payments.

We need the government to provide a sustainable social care funding settlement with a clear plan to address workforce shortages, to ensure the sector can fully support people with MND.  

Unpaid carers are the backbone of support for people with MND. The financial support they receive does not reflect the contribution they make and too many are excluded from support at all. We are calling on the government to review the level and eligibility criteria of Carer’s Allowance to ensure it meets the needs of carers.