22 November 2023 Campaigns

Through The Roof logo

Today the Chancellor of the Exchequer announced the Government’s Autumn Statement. As part of our commitment to ensuring that Government listen to the voices of people with motor neurone disease (MND), we submitted a response ahead of the Statement.

In our response, we highlighted the catastrophic costs and challenges faced by people affected by MND during the cost of living crisis, which has been the focus of our ‘Through The Roof’ campaign. We urged the Government to recognise the impossible choices facing people with MND, in particular the catastrophic energy costs faced by people reliant on energy intensive assistive equipment.

We called for the implementation of an Energy Social Tariff, which acts as a discount on energy bills. The Government promised to consult on the introduction of targeted support for energy bills including an Energy Social Tariff in Autumn 2022, yet we are still waiting for publication of the consultation. Since this promise, we estimate households affected by MND have spent over £2m on electricity costs for charging and maintaining assistive pieces of equipment. We are disappointed that again today that the Government has not delivered on this promise.

We also highlighted the tireless efforts of unpaid carers of people with MND providing support to their loved ones. We called for an immediate uplift in the rate of Carer’s Allowance to reflect the value unpaid carers of people living with MND offer, which we estimate to be saving local authorities £185m a year. We also called for the reduction of the strict eligibility requirements so more carers of people with MND can access the entitlement.  

Though this has not been delivered today, it is welcome news that the government has committed to increase benefits in line with September’s rate of inflation of 6.7%. This will increase the rate of Carer’s Allowance to just under £82 per week.  However, this pales in insignificance to the £712 a week an average carer of a person with MND saves local authorities by providing care that would have otherwise been met by formal social care services. We urge the government to implement greater increases in the rate of Carers’ Allowance to a level that better reflects the value unpaid carers bring, not just to their loved ones but the wider health and social care system as a whole.

Finally, it is essential that the Government’s proposed welfare reforms do not lead to inappropriate requirements placed on people with progressive and terminal conditions such as MND. We will continue to engage with the Department for Work and Pensions to ensure this is not the case.

The measures outlined today do not go far enough in providing the necessary support for people with MND and their carers. Our Through the Roof campaign will continue to push the Government deliver on the needs of the MND Community. 

Alex Massey, Head of Campaigning, Policy and Public Affairs at MND Association