Cost of Living Crisis - Initiative

We at Nerve Tumours UK have signed the cost of living crisis open letter, to highlight the challenges many people living with neurological conditions are facing, in relation to the cost of living crisis.

This was sent to the Chancellor of the Exchequer, Jeremy Hunt, ahead of the Medium-Term Fiscal Plan, on 26/10/2022. The letter was initiated by the Huntington's Disease Association, on the need for urgent action to support people with neurological conditions, and invited fellow members of the Neurological Alliance, of which we are a member, to countersign the letter.

One in six of us across the country live with a neurological condition. It is expensive to live with one. Extra costs associated with a neurological condition, such as higher heating bills; buying specialised equipment; paying for taxis to get around or covering higher insurance premiums, are estimated to cost at least an additional £200 a week.

The open letter was signed by 37 charities.

Dear Chancellor of the Exchequer,

We are writing to you as representatives of charities supporting people affected by neurological conditions ahead of the Medium-Term Fiscal Plan, to highlight the challenges many people living with neurological conditions are facing in relation to the cost of living crisis.

One in six of us across the country live with a neurological condition. It is expensive to live with one. Extra costs associated with a neurological condition, including higher heating bills, buying specialised equipment, paying for taxis to get around or covering higher insurance premiums, are estimated to cost at least an additional £200 a week.

These higher costs come at a time when the general cost of living has risen exponentially. While the Energy Price Guarantee was both welcome and necessary, many deep concerns persist about affordability. Energy prices are still over 50% what they were this time last year and according to latest ONS figures inflation is at 10.1% with food prices up 14.5%. This is causing many to cut back on basics,  increasing the risk of people getting into debt and homelessness – with the right support, this could be prevented. 

Unfortunately, the support offered so far simply doesn't go far enough. What is more, those on benefits including those who are unable to take on more hours or to work at all due to their neurological condition are seeing real term cuts to their income, as benefits are expected to fall at least 6% behind inflation this year. Without urgent action, this will push a further 600,000 to 1.3m people into poverty, including 150,000 to 500,000 children.

With that in mind, we urge you to offer additional support for those with disabilities, including people affected by neurological conditions. The best way to alleviate pressure on those at the sharpest end of this crisis would be to urgently uprate benefits in-line with inflation. This would go a long way for disabled people and those with long term conditions to be able to keep up with rising living costs. 

Additionally, increasing the levels of Disability Cost of Living Payments and extending the Warm Homes Discount to disabled people would help to protect those living with neurological conditions from fuel poverty. 

Many people affected by neurological conditions are facing the worst of the cost of living crisis. Additional costs and inadequate targeted support are putting people at greater risk of poverty as well as placing yet more pressures on already overstretched health and social care services. We urge you to provide additional support for the 1 in 6 of us living with a neurological condition as part of the Fiscal Plan.

The chancellor responded late in December. 

Governmental guidance for those registered as disabled, or on benefits or tax credits are listed below. As every case is different, have a read through all sections - you might be eligible to a free bus pass, or to income and energy bill support.

This link also directs you to governmental guidance and support in Wales, Scotland and Northern Ireland. 

Our Help section offers additional advice and support.