True cost of multiple sclerosis revealed

People in Ireland with multiple sclerosis (MS) can expect to pay thousands of euro every year on various costs associated with their disease, a major new report has revealed.

The report, The Societal Cost of MS, reveals that the neurological disease costs Irish society more than €429 million per year, with those affected facing direct costs of €17,103 each per year.

This money is spent on things like GP visits, hospital visits and medical scans.

However, intangible and indirect costs, such as those associated with missed days from work, childcare, transport to GP/hospital visits and car parking, can cost thousands more.

MS is a chronic disease of the central nervous system, which causes a gradual degeneration of the nerves. This results in a progressive deterioration in various functions controlled by the nervous system, such as vision, speech and movement.

According to the report, those with MS require around 54,000 GP visits per year. They also spend over 16,000 nights in hospital and have to visit Emergency Departments (EDs) over 1,500 times annually.

The report was based on a survey of almost 600 people with MS and it revealed that the vast majority (84%) visit their GP six times each year. They also account for around 21,800 neurology visits each year.

The findings suggest that MS can have a major negative impact on mental health. One-third of respondents said that they had been diagnosed or treated for depression since the onset of their MS, while at least one in four had been diagnosed or treated for anxiety.

Almost all people with MS (92%) suffered with fatigue.

Meanwhile, the report also showed the major impact MS can have on families, particularly children, and carers.

Almost two in three people with MS felt they were not able to provide financially for their children as much as they wanted to, while one in three said that their disease impinged on their children's ability to take part in normal childhood activities.

Almost three in four said that it is likely that their children worry excessively about them.

Each person with MS was found to be receiving almost 1,000 hours of care per year, some of which was unpaid. In fact, one-quarter of people said that their carers had to take time off work to provide care to them. Within this group of carers, one in five gave up work to care for the person with MS.

Most people were receiving informal care from family and friends, with just 14% receiving formal care from private carers or the HSE. Some 60% said that their spouse or partner was their main carer.

The report noted that four in 10 people with MS had experienced a relapse in the previous year. The total cost of relapses each year was almost €17 million, however as much as €10 million could be saved if relapses were reduced, the report suggested.

People with MS are also less likely to be in employment compared to the general population, and one in three who are employed work reduced hours.

"The huge impact of MS on patients and the healthcare system has never been so clear. The far-reaching consequences throughout society are very evident. We can see the impact in primary care and within hospitals. One important finding is the burden of relapses, a reduction in which would save a huge sum each year," commented consultant neurologist at the Mater Hospital, Dr Killian O'Rourke.

The report highlighted the need for greater access to interventions that reduce relapses and disability progression, and promote independent living.

According to Ava Battles, CEO of MS Ireland, which produced the report, these findings are ‘extremely important for those who live with MS, their families and healthcare professionals'.

"We now need to use these findings to influence a reduction in relapses and in progression of the disabling disease. Responses from families throughout Ireland have clearly shown that improved employment opportunities are needed for those with MS.

"Both personal case studies and the research bring to life that people with MS and their families need extra support to ensure as high a quality of life as that of the general population. This report highlights the cost outside the health system that can often be forgotten," she said.

For more information on MS, call the MS Information Line on 1850 233 233 or click here


[Posted: Wed 21/10/2015]

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