Motor neurone disease diagnosis costs patients £12,000 a year

  • A new report from cross-party think tank Demos urges action to ease the financial impact of motor neurone disease (MND), following a major research project studying the impacts on hundreds of people living with the disease and their families, in England, Wales and Northern Ireland
  • The research found on average, people with MND and their families spend the equivalent of £9,645 every year in regular and enhanced costs, as a direct result of the disease, plus a further £2,175 in one-off costs
  • Over two-thirds of families use their savings to cope with the extra costs of MND during the illness, and sometimes little is left after bereavement
  • 82 per cent of people living with MND have experienced a negative financial impact following diagnosis, and only one in five consider the financial support they receive to be adequate

A new report from Demos think tank reveals the hidden side of a devastating terminal illness: the financial impact on those living with motor neurone disease (MND) and their families.

MND is a fatal neurological condition that attacks nerves in the brain and spinal cord, muscles stop working, leaving people trapped in a failing body. The disease can be both rapid and highly unpredictable in its progress, making it particularly difficult to anticipate future support needs and plan ahead.

In a major research project spanning six months, Demos surveyed almost 800 people living with MND and bereaved families, to measure the hidden costs of diagnosis for both individuals living with the disease, and the long-term financial implications for their families after their death. Supported by the Motor Neurone Disease Association, the report captures the direct and indirect financial impact and considers ‘unmet needs’ – the things that people with MND go without in order to manage their finances.

Demos worked closely with eight people living with MND and two family members of people living with the disease from across England and Wales. Their diaries capture all the costs they incurred over a four-week period, any support they received, and their reflections on the impact on their lives. Finally, Demos convened a policy workshop, bringing together professional experts and stakeholders from the third sector, health and social care, and academia.

Demos’ research identified that people living with MND are forced to incur three types of additional costs as a result of their illness:

  1. One-off costs – the biggest are typically housing adaptations, and adapting or buying a vehicle
  2. Regular costs – care costs, and paying for extra assistance around the home (e.g. with laundry, gardening)
  3. Enhanced costs – costs that are common but increase as a result of having the disease; the biggest are typically energy bills and for travel insurance

Together, these amount to around £9,645 every year in regular and enhanced costs for individuals and their families, plus a further £2,175 in one-off costs during the duration of the disease – totalling almost £12,000.

Many people living with MND face the added burden of living on a reduced income when they are unable to work and their family members are often forced to leave work in order to provide unpaid care. Four-fifths of people with MND who live in their home are supported by their partner or spouse. Carer’s allowance, awarded to people who provide unpaid care to someone for over 35 hours per week, only entitles recipients to £62.70 per week.

Based on the findings of the report, Demos recommends that:

  • Health and social care professionals ensure that people living with MND are signposted to financial advice and support as soon as possible after diagnosis.
  • Employers should facilitate a planning process for both parties to agree on steps to be taken at key stages in the disease’s progression, enabling employees to continue in work for as long as they want and are able to.
  • Third sector organisations provide financial support to people living with MND should review how much funding is used to pay for assistance around the home, and consider redirecting funds to this particular cost.
  • Local authorities and the Northern Ireland Housing Executive should consider topping up disabled facilities grants for people with rapidly progressing conditions, including MND.
  • The Department of Health and relevant health commissioning organisations in each of the devolved nations must act to ensure that people with MND are made aware of NHS Continuing Healthcare in the early stages of the disease.
  • The Department for Work and Pensions (DWP) must reconsider strengthening the assistance available to widowed parents through Bereavement Support Payment.
  • The Government should extend ‘returnships’ funding to bereaved carers looking to re-enter employment.

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Personal reflections from participants in this research:

“I am no longer able to provide for my family and the burden of this falls upon my wife. She would love to be able to give up work and look after me but financially we would not be able to manage and we have a mortgage to pay”. Woman with MND, aged 75–84, East of England

“My son (who cares for me) deserves more money for everything he does for me, and as he left his job to look after me. He currently only gets £60 per week, which isn’t enough”. Man living with MND, aged 75–84, South East

“Through my time off work to care for my husband & the significant (& ongoing) impact on my emotional health I lost my job and career. It is appearing unlikely I will be able to return to my lifelong profession (mental health nursing) or any similar work”. Bereaved spouse or partner, aged 45–54, East Midlands

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Commenting on the findings, the report’s author, Simone Vibert of Demos said:
“Being diagnosed with a progressive, terminal condition such as MND is one of life’s biggest challenges. People with MND and their loved ones need to focus on making the most of their time the time they have left with each other, not worrying about their finances. Yet our research shows that many people with the disease are living with an overwhelming financial burden. Minimising the impact of the extra costs of the disease is critical to reducing this burden. The financial support available needs to be enhanced and made more easily accessible. Furthermore, the unpredictability of MND makes financial planning difficult for this group. It is therefore important that people with the disease are signposted to financial advice as soon as possible after diagnosis.”

Chris James, Director of External Affairs at the MND Association said:
“MND is a devastating disease and this report underlines the extra hardship people face financially too. It clearly demonstrates the significant spend required to try and maintain quality of life; from home adaptations and care to trying to maintain independence through specialised wheelchairs and vehicles. I’d like to thank all those people affected who shared sometimes harrowing stories. The gap between the benefits entitlement and the actual cost of living with MND is stark. These stories and the data gathered will help our continued efforts to campaign for the right care and support at the right time. When facing terminal illness no one should have sleepless nights worried about how they are going to pay for their own funeral or that they will be leaving their family without a home.”

About Demos
Demos is Britain’s leading cross-party think-tank: an independent, educational charity, which produces original and innovative research.

Methodological Note
Research for this project comprised multiple qualitative methods, including:  a review of existing research; a survey of people living with MND (n = 333); a survey of family members bereaved as a result of MND (n = 441); one-to-one diary-led interviews with eight people living with MND and two family members of people living with MND; and a policy workshop attended by representatives from the third sector, health and social care sectors and academia.

About the MND Association
The MND Association is the only national charity in England, Wales and Northern Ireland focused on MND care, research and campaigning.

For more information about this research project, please contact:

Eva Charalambous – Communications Manager, Demos
[email protected] | 020 7367 4200 | (Out of Hours) 07804252211