British patient advocate Shana Pezaro writes about the need to keep multiple sclerosis (MS) advocacy going in times of Brexit.
The recent UK Referendum vote to leave the European Union has caused great uncertainty for people living in the UK. There are many unknowns about our future, or how the UK’s relationship with Europe will eventually look. It is extremely complex. Many of us cannot begin to comprehend what it will actually mean, or understand the negotiations that need to take place. But I do know that for people like myself living with MS, it is crucial that the UK continues to collaborate with our European friends and partners.
The MS International Federation’s (MSIF) ‘Atlas of MS’ shows there are 100,000 people living with MS in the UK and over 700,000 people affected by MS throughout Europe. The European MS Platform (EMSP), the host of this blog article, brings together MS charities and societies from across Europe to share data and best practice, and to develop projects. Together, they compile pan-European MS data and statistics by using tools such as the ‘MS Barometer‘. The end products of their cooperation are meant to provide better outcomes for people with MS by boosting research in the field and shaping European health policies.
UK’s crucial role
The UK contributes massively to the wealth of knowledge and experience of the European MS community and in return gains crucial information as part of this network.
For example, Gisela Kobelt’s European Health Economics study ‘Access To Innovative Treatments In Multiple Sclerosis In Europe’ revealed that the UK ranked 25 out of 27 European countries on the proportion of eligible people with MS receiving disease-modifying medication. This information then contributed to the UK’s ‘MS Lottery’ Campaign, which highlighted our extremely low prescribing rates in comparison to other European countries.
Also, the UK MS Society is set to publish the results of the ‘My MS, My Needs’ survey in the summer of 2016. The survey has collated extensive data from over 11,000 people living with MS in the UK. The results and information it reveals will not only benefit people in the UK. It will also enable EMSP and other pan-European organisations such as the European Federation of Neurological Associations (EFNA) to advocate effectively for the specific needs of people with MS.
Benefits of EU-UK collaboration
There are many diverse Pan-European projects which the UK both contributes to and benefits from.
For example, the EMSP’s ‘MS Nurse Professional‘ programme, an online training course for MS Nurses across Europe. In UK alone, almost 300 MS nurses have registered with this project.
Also, the ‘Under Pressure’ project is a fantastic, hard-hitting, visual resource of videos and pictures highlighting the lives of people living with MS in different countries.
Across Europe, ability to maintain paid employment is recognised as a key aspect affecting the lives of many people living with MS. EMSP has developed initiatives under the ‘Paving The Path to Participation’ project, thus promoting policy change within larger Europe to maximise employment of people with MS. This includes the ‘European Employment Pact‘ and a ‘Toolkit’ for employers.
And the ‘Believe And Achieve‘ scheme directly offers younger people with MS, including those living in the UK, employment opportunities in important businesses.
Same health condition, same emotions
Yet whilst access to medications and services differ across the EU, so many aspects of living with MS are not determined by country or boundaries. I am often struck by how the emotional impact is the same for us all.
Diagnosis and living with MS can affect our identity, our relationships and how we feel about our sexuality. We share common experiences and emotions. There is a great need for increased global awareness and understanding of MS and I know that working together as a united MS community is the only way forward.
Whilst the UK has voted to leave the European Union, we have not left the European MS community. Collaboration must and will continue. We are stronger working together.