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Restless Legs Syndrome
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‘Value of Treatment for Brain Disorders’ report reveals wide disparities in treatment of brain diseases

You may recall we asked for donations from you, our supporters, to help fund a European Brain Council (EBC) study on the value of treatment of brain disorders. Thanks to your donations and extensive work by the European Alliance for Restless Legs Syndrome (EARLS), RLS was one of the seven brain disorders included in the study, sitting alongside much more widely recognised disorders such as Parkinson's disease, dementia, epilepsy and multiple sclerosis. This in itself was an enormous achievement and has truly put RLS on the agenda for any future brain disorder studies and research.

Today, the EBC will release research conclusions and will launch a Policy White Paper. The White Paper recommendations will highlight unmet needs, new research developments, benefits of seamless care, and will build on key results from case studies and consultations with experts.

Key findings:

- Brain disorders will affect more than one in three European citizens during their lifetime - currently more 165 million people in Europe.

- More than 165 million Europeans are living with a brain disorder, causing a global cost (direct and indirect) exceeding 800 billion euros for National Health budgets.

- Major depression together with stroke, dementia and alcohol use are among the top four causes of burden disability in Europe.

- Many brain disorders have an early-onset in life and, due to their chronic course, have an enormous health and socio-economic impact.

- Numerous needs of individuals at risk and patients are unmet. Up to 8 out of 10 people living with a brain disorder remain untreated or inadequately treated although effective treatments exist.

Commenting on the new report, EBC President Professor David Nutt said: “Up to eight out of ten people affected by brain disorders remain untreated, even though effective treatments exist in many cases. Inequality of access to treatment is a growing problem and knows no borders.”

EBC says the European Commission has significantly increased funding for research on brain diseases, with 5.3 billion euro ear-marked between 2007 and 2017. This sum, shared between the 165 million sufferers in Europe, works out at just 2 euro and 48 cents per person per year. In terms of the number of sufferers, this is still a small sum – less than the price of a cup of coffee,” said Ann Little, President of the European Federation of Neurological Associations (EFNA).

The report highlights the need for early intervention and detection. Timely intervention brings measurable health gains such as improved survival rates, reduced complications and disability, better quality of life and lower treatment costs.

The report includes case studies based on data sets from the United Kingdom, France, Germany, Italy, Spain, Luxembourg, Czech Republic, Sweden, Switzerland and Russia.

EBC’s key recommendations:

• Invest in more basic and clinical & translational neuroscientific research

• Increase brain disease awareness, patient empowerment and training for health care providers at all levels of care

• Address prevention and timely intervention as a priority based on needs

• Address health care services delivery and support clear patient pathways

• Foster seamless care through validated models of care & tools implementation, legislation and incentives

We will keep you posted on any future developments but, for now, ask that you help raise awareness of this important work by sharing it on Facebook, Twitter etc. #BrainTimeMatters #ValueOfTreatment

1 Reply

Good stuff, good to see Nutt is still fighting to help people.

I sometimes wonder if it is the intention of the health system to keep us in a perpetual state of poor health as they so poorly execute their duties!

I look forward to reading the report, thanks.


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