Study shows true economic cost of living with multiple sclerosis

A study of people living with the devastating effects of multiple sclerosis (MS) has shown the true economic cost of living with the incurable, life-long condition.

The independent research is one of the largest ever studies into the financial impact of MS and has revealed that the cost of being diagnosed with MS is on average nearly GBP17,000 per person. Care provided informally by families accounts for more than 70% of this.

For the 85,000 living with the condition, this works out to be a total expense to the economy of GBP1.4billion, making MS second only to tumours as the most costly brain condition across Europe.

Worse still, the study found that among the nearly 2,000 people surveyed from across the UK, half said they had to leave work due to their MS, pushing the figure to more than GBP25,000 per person when lost employment is added.

Daniel Berry, head of policy and campaigns at the MS Society, said: "This research shows the shocking cost of living with MS.

"It has been proven to be economically viable to keep people with MS as healthy as possible and in work for as long as possible and this study shows how cutting corners in health and social care is counter productive.

"At a time when the government is running headlong into even more debt, these figures underline the enormous costs of inaction. Long term investment in research and in support for carers would pay dividends for people living with MS and for the whole economy."

The Costs of MS study analyses the economic cost, quality of life and disability associated with MS and the independent research was carried out for the MS Society by Dr Paul McCrone from Kings College London and published in the peer reviewed journal of Pharmacoeconomics.

Dr McCrone said: "The costs associated with MS are substantial. Most of the service costs are hidden as they represent care provided by family members.

"It is crucial that evaluations of any new treatments or forms of care should assess their impact on carer costs as well as the costs of statutory services."

The study has shown that the cost of MS can be broken down as follows:

Informal care GBP1,021 million (72%) Professional care GBP245 million (17.2%) Medication GBP115.5 million (8.1%) Aids and adaptations GBP37.1million (2.30%) Medical tests GBP5.7million (0.4%)  

With bills for care from family and friends estimated to be worth more than a billion pounds alone and the cost of home adaptations running into tens of millions, it is no surprise that MS Society grants for financial advice and assistance are in high demand.

For more information, see http://www.mssociety.org.uk

Case studies - contact MS Society press office for interviews

  • Leonie from Derbyshire is married and has two children.
  • She has lived with MS for almost 20 years and as a result of worsening symptoms had to give up her role as the main breadwinner in her household.
  • She took early retirement aged 39 from her job as a school bursar as a result of the unpredictable MS.
  • This means her family is in a much worse position financially, but her stress-related MS relapses have lessened.
  • Fay from Nottinghamshire has a nine-year-old son who is her main carer.
  • She was diagnosed with MS five years ago and two major relapses mean that she now has to work part time.
  • She finds it hard to pay the bills and had to rely on her mother to fund an electric wheelchair that she needs to get up the hill on which she lives.
  • Due to constantly feeling cold as a result her MS, Fay has the heating on continuously and has to do more washing due to continence issues related to her condition.
  • Her electricity bills are always high because of the need to charge her electric wheelchair at night.

Note: 

  • The survey statistics are based on a large (1,942) sample, with a very good (48.9%) response rate  
  • The McCrone study suggests that the average cost of MS is GBP16,794 per person. This increases to GBP25,310 for people of working age, when factoring-in the costs of lost employment - The survey demonstrated that people with MS in the UK have a relatively low quality of life, using the recognised QOL measurement  
  • This work looks at the economic costs of MS, not the costs in terms of worry, discomfort and pain to people living with the condition  
  • It is important to quantify the total costs of conditions such as MS, so that policy makers have the full information to work with when making policy decisions. This is especially relevant when assessments are made of new treatments that can people keep people as healthy as possible for as long as possible  
  • The average respondent to the survey was a 54 year old married woman with adult children, retired due to ill health.   
 

Employment

 
       
  • 50% of the sample were retired due to ill health  
  • 21.3% were in work, but half of those were only part time  
  • 7.5% were unemployed   - compared to an average unemployment rate in 2007 of 5.4%.  
  • 9.5% retired and  
  • 8.8% housewife/husband    
 
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