Written evidence submitted by MND Association (WIN0004)

About MND and the MND Association

Few conditions are as devastating as motor neurone disease (MND). It is a fatal, rapidly progressing disease of the brain and central nervous system, which attacks the nerves that control movement so that muscles no longer work.

There is no cure for MND. While symptoms vary, over the course of their illness most people with MND will be trapped in a failing body, unable to move, swallow, and ultimately breathe. Speech is usually affected, and many people will lose the ability to speak entirely. Up to half of people with MND will also experience changes in cognition, some of whom will develop frontotemporal dementia.

There are up to 5,000 people living with MND in the UK at any one time. It can affect adults of any age. MND kills a third of people within a year of diagnosis and more than half within two years, typically as a result of respiratory failure. A small proportion of people experience slower progression and live with MND for longer, but survival for more than ten years is highly unusual.

The MND Association is the only national organisation supporting people affected by MND in England, Wales and Northern Ireland, with 90 volunteer-led branches and groups, and 13,000 volunteers. The MND Association’s vision is of a world free from MND. Until that time, we will do everything we can to enable everyone with MND to receive the best care, achieve the highest quality of life possible and die with dignity.

The impact of the cost of living crisis on people affected by MND

Due to the complexity of the condition, people require extensive care and support as the condition progresses, such as the use of energy-intensive electrical equipment. These pieces of equipment include things such as electric wheelchairs, non-invasive ventilation, suction machines, stairlifts, hoists, through-floor lifts as well as environmental controls such as door openers, amongst others. 

In 2023, MND Association conducted a survey[i] on the experiences of households affected by MND during the cost-of-living crisis. It looked at the number of people reliant on personal powered pieces of equipment and the impact the cost-of-living crisis has had on their use. It found that:

This equipment enables people to remain safe, independent and, in some cases, alive, meaning not only are these costs catastrophic but they are also inescapable. This necessitates additional support for households who use energy-intensive equipment to help manage and live with their condition.

As well as electricity costs, people with MND may also run up higher bills for other utilities because of their condition. For instance, muscle wastage commonly associated with MND can often result in people feeling pain in colder environments, requiring them to use more home heating. Families have also told us significant increases in their water bill due to having to wash more clothes and bedding, cleaning medical equipment, and spending longer in the shower due to poorer mobility.

  1. What more could have been done to prevent price shocks being passed to consumer bills?

Suitability of the energy price guarantee

The Energy Price Guarantee (EPG) – a £2,500 cap on the cost of energy a typical household uses – was introduced in October 2022. It was only due to run until March 2023 and we were pleased to see Government extend this cap until June 2023 – something which we campaigned for alongside other charities and organisations in the sector.[ii]

However, the price cap was frozen at twice the average cost of energy of what it was in 2021 and it is currently insufficient for households to rely on ad-hoc support without addressing the underlying causes of many people’s inability to meet the rising cost of essentials, particularly for the most financially vulnerable such as those on means-tested benefits.

Families managing advanced stages of the condition have told the MND Association that they currently spend between £800 and £900 a month on their household electricity bill, which equates to £10,000 a year. The equipment enables people to remain safe, independent and, in some cases, alive, meaning not only are these costs are catastrophic but they are also inescapable.

People with less advanced MND may use a smaller range of equipment but are still likely to rely on powered home equipment to enable them to live safely at home. We estimate that people with MND spend, on average, an additional £600 a year on electricity costs – based on the October 2022 Energy Price Guarantee unit rate – for charging and using assistive equipment, on top of other household costs and other additional costs of MND.[iii]

Potential changes to NHS Rebate Scheme

Additional and targeted support is required to mitigate the impact of rising energy costs and ensure people can continue to use assistive equipment sufficiently to manage and live with the disease. There are already some schemes in place to financially reimburse – to some extent, at least – disabled people who use assistive equipment. For example, NHS England allows trusts to offer electricity rebates for two types of equipment – oxygen concentrators and dialysis machines.

However, it is unclear why other pieces of electrical equipment are excluded from the rebate. This means that many other disabled people with conditions who rely on assistive equipment are barred from accessing the scheme. Research suggests that the scheme is not well publicised nor utilised.[iv][v] The rebate is also paid for through local NHS budgets which can be unstable and subject to cutbacks.

While the NHS rebate scheme is a positive one, more work needs to be done on eligibility and delivery so a wider group of disabled people reliant on assistive equipment are able to benefit from the scheme in the future. 

  1. Has Ofgem got its priorities right in addressing customer protection?

The role of Ofgem is to protect consumers now and in the future by working to deliver a fairer energy system. As we have found, households affected by MND have experienced a disproportionate impact due to the cost of living crisis, particularly in relation to their heavy reliance on assistive equipment on maintaining their health and wellbeing and burgeoning energy costs.

At the beginning of 2023, Johnathan Brearley, Chief Executive Officer for Ofgem, supported the call the Government to examine – with urgency - more targeted energy support for vulnerable households, namely, an Energy Social Tariff. He recognises that, proportionally, vulnerable households have been significantly impacted by extremely high energy prices and high market volatility. Therefore, there is a need to explore additional, targeted support for a defined set of households. 

  1. Is the legislative framework on pricing controls suitable for protecting consumers?

The current system of pricing controls is clearly failing people with MND who are heavily reliant on assistive equipment to maintain their safety and independence. One way to better protect vulnerable households from catastrophic energy costs is through more targeted energy support such as an Energy Social Tariff.

There are various models of an Energy Social Tariff, whether these are discounts applied by a cash payment or a tariff on how much households pay per unit of energy.[vi][vii] In any consideration of an Energy Social Tariff, Government should ensure that eligibility is extended to all households affected by MND. Passporting only disability welfare claimants to further support risks some households missing out on the benefits of an Energy Social Tariff.[viii] For example, some people with MND may not yet be in receipt of benefits, but the often-rapid deterioration of their condition means that they may already be using assistive equipment to manage their condition.

The tariff should also ensure that the discount is below the market rate and that it is applied directly to the unit cost of energy, so households pay discounted prices at the point of purchase and not reimbursed at a later date. This would help facilitate access to support that is direct and immediate.

Social tariffs already exist across other industries – water and broadband – and there is will from Ofgem as well as the energy industry to explore such a scheme, so we know that the tariff is both desired and achievable.[ix][x] It is also favoured across patient organisations, 95 of which signed an open letter to Chancellor Jeremy Hunt in January 2023 calling for the introduction of the tariff.[xi] An Energy Social Tariff may be a more fiscally attractive policy as more targeted energy support is likely to be cheaper than universal support such as the EPG.

However, despite Government committing to explore more targeted energy support options in the Autumn 2022 Budget as well as the Spring 2023 Budget, there has been little will and movement from Government in progressing this. Unless urgent and significant Government investment in support is forthcoming, people with MND and their families will continue to experience the disproportionate impact of this crisis for years to come.

We urge Government to recognise that the energy crisis is far from over – Cornwall Insight research predicts that annual energy prices will not return to pre-2021 levels until 2030.[xii] Therefore, we ask Government that they do not renege on their promise to consult on targeted energy support.

August 2023

[i] MND Association. (2023). Through the roof: The experience of households affected by MND during the cost-of-living crisis

[ii] Money Saving Expert. (2023). Budget 2023: Energy Price Guarantee to remain at £2,500 in win for Martin Lewis and MSE – here’s what it means for your bills. Available: https://www.moneysavingexpert.com/news/2023/03/energy-price-guarantee-government-mse-campaign-win/

[iii] MND Association. (2023). 2023 Spring Budget Statement. Available: https://www.mndassociation.org/2023-spring-budget-statement/

[iv] Retail Energy Code. (2023). Support for medical equipment users: A new approach to meeting electricity costs.

[v] Contact. (2023). Out of energy. Available: https://contact.org.uk/help-for-families/campaigns-and-research/out-of-energy/

[vi] Citizens Advice. (2023). Social tariff now essential in era of high energy bills. Available: https://www.citizensadvice.org.uk/about-us/about-us1/media/press-releases/social-tariff-now-essential-in-era-of-high-energy-bills/#:~:text=to%20net%20zero.-,A%20social%20tariff,being%20affordable%20to%20the%20government.

[vii] Age UK. (2023). Keeping the lights on: The case for an energy social tariff. Available: https://www.ageuk.org.uk/globalassets/age-uk/documents/reports-and-publications/reports-and-briefings/safe-at-home/age-uk-energy-public-policy-report-march-2023.pdf

[viii] Age UK. (2023). Keeping the lights on: The case for an energy social tariff. Available: https://www.ageuk.org.uk/globalassets/age-uk/documents/reports-and-publications/reports-and-briefings/safe-at-home/age-uk-energy-public-policy-report-march-2023.pdf

[ix] Ofgem. (2023). Jonathan Brearley’s speech at the Institute for Government. Available: https://www.ofgem.gov.uk/publications/jonathan-brearleys-speech-institute-government

[x] CityAM. (2023). Energy bosses urge Hunt to bring in social tariff to support vulnerable households. Available: https://www.cityam.com/energy-bosses-urge-hunt-to-bring-in-social-tariff-to-support-vulnerable-households/

[xi] National Energy Action. (2023). Ninety-five organisations call for the introduction of a social tariff. Available: https://www.nea.org.uk/news/ninety-five-organisations-call-for-the-introduction-of-a-social-tariff/

[xii] Cornwall Insight. (2022). Energy prices to remain significantly above average up to 2030 and beyond. Available: https://www.cornwall-insight.com/press/energy-prices-to-remain-significantly-above-average-up-to-2030-and-beyond/