When you live with a chronic condition such as multiple sclerosis it can feel as if you’re the only person in the whole world who has it. But you aren’t alone, trust us. You may not have any friends with MS, or even know anyone else who has it, but they’re definitely out there. There are nearly 700,000 people in the same boat as you in Europe alone.
What’s more, all 700,000 are represented by the European Multiple Sclerosis Platform (EMSP), an umbrella organisation that represents MS societies from 34 European countries that works to improve treatment, support and quality of life for people with MS.
As part of this goal, the organisation commissions an annual questionnaire, otherwise known as ‘the MS Barometer’, which is a massive survey designed to help gauge the experiences of people with MS in different countries across Europe. Answers are scored numerically to allow the results to be quantified and provide a helpful benchmarking tool.
The latest Barometer included twenty-five different countries, representing an estimated 505,175 people with MS in Europe. The questionnaire covered all aspects of living with MS, from access to treatment, to research and employment rights. So what did they find? What do MSers in Europe have in common? And how are their experiences different? Let’s dive in.
Access to medical care
If you live in Germany, Italy, Iceland or Belgium, you’re in good hands. These countries scored the highest when it came to access to treatments and therapies. In Germany, which ranked best of all, 70% of people with MS are given disease-modifying drugs, compared with no provision of these drugs in Belarus. 100% of people receive symptomatic care in Czech Republic and Iceland, compared with just 45% in Serbia and 25% in Belarus. If you live in the Czech Republic you’ll have no problem getting to see a neurologist either, with one available for less than every 100 people with MS. This was the case in most of the countries that took part in the survey, with the exception of Croatia, Ireland, United Kingdom, Serbia, Russia and Belarus, where access to a neurologist is more restricted. In Belarus, there is only one neurologist for more than every 500 people with MS. Imagine that. You need to see a neurologist and you’re number 501 in line! This echoes findings of a report by the Multiple Sclerosis International Federation (MSIF), which found high income countries across the globe have 100 times more neurologists per head than low income ones.
Access to rehabilitation can also be an issue. In Ireland, for example, the barometer reported there are simply no facilities for this, and in some countries like Spain, Serbia and Poland, less than a third of people have access to rehabilitation services, something that deeply impacts quality of life. That said, many of the countries scored highly in this category, with 100% of people in nine European countries all receiving the care they need.
Making MS research a priority
MS research has made great strides in recent years, and much of this is funded by grants from organisations like local MS societies. Of the countries surveyed, 52% of MS societies contributed financially to MS research. This is encouraging as it allows the MS society to influence the national research agenda (which was the case for 36% of countries in 2013), although there’s definitely room for more engagement.
National MS registers are one way all countries could contribute to research efforts. These registers house loads of data about people living with MS and can help drive research efforts in a big way. Currently, just 40% of European countries have a national MS register, and many of these are incomplete (less than 25% of people with MS are accounted for on the UK register, for example).
Getting an education
Schooling is another key issue for people with MS and, again, appears to vary greatly across Europe. It’s crucial that young people diagnosed with MS receive the right support to help them complete their studies. Currently 52% of countries have programmes in place to achieve this. In Britain, for example, the law states special education provision has to be made available for any child with a learning difficulty caused by “a disability which prevents or hinders them from making use of educational facilities of a kind generally provided for children of the same age.” And according to the factsheet “Education for children affected by MS” issued by the Multiple Sclerosis Society, this also includes children with MS. This may include provision of transport to get to school, attending school at times that best suit the child’s energy levels and even home schooling during relapses. It also includes regular rest breaks during the school day if fatigue is an issue and special allowances during exams, such as extra time to complete tests. It is encouraging, however, that 72% of countries have a network for young people with MS, run by their local MS society.
Support at work
Employment is another big hurdle for anyone with MS. The good news is most of the countries surveyed have laws to protect the working rights of people with MS, and 88% have incentives in place to recruit or retain people with MS in employment (Portugal, Switzerland and the UK are not among them). Unfortunately, there’s a big difference between rights and reality – nearly half of the countries questioned have no awareness around employment issues and provide no support for workers with MS. It’s a sad fact that half of people with MS stop working 3 years after diagnosis (according to EMSP), so this is something that definitely needs action.
A voice for people with MS
Speaking of law, more people with MS should be involved in their government’s decision-making process if the results of the latest barometer are anything to go by. Germany scored highest in this area, closely followed by Belgium, Italy, Russia, and the UK, but nine countries (Austria, Croatia, Czech Republic, Estonia, Greece, Iceland, Poland, Serbia and Spain) scored less than a third of the possible total score. Although 68% of countries have a body on MS that advises their government on MS policies, only 24% of these do include people with MS – this seems off, doesn’t it? Who is better to represent the needs of people living with MS than…you guessed it, people living with MS?
Clearly there is still work to be done. By identifying the gaps in research, treatment, support and care for people with MS, the hope is that the EMSP can effect real changes at a European level by raising awareness and lobbying relevant governments. And the good news is, no matter which country you live in, everyone will benefit.
We’d love to hear your thoughts. How could things be improved in your country? Let us know on Facebook.