Paediatric MS and caregivers - addressing policy and action gaps to support children and adolescents with MS and their carers better

The International Paediatric MS Study Group states that an increasing number of cases of Multiple Sclerosis (MS) in children and adolescents have been recorded worldwide. Between 3-11% of MS cases are now diagnosed before the age of 18. With the increasing number of paediatric MS cases, there is a growing need for the provision of care for children and adolescents with MS. However, due to the recency of an emerging need and lack of data on paediatric MS, there is a vacuum in policy and action regarding how to support best those children and adolescents with MS and their families who are key carers.

To address the emerging needs, in 2018, EMSP initiated the project “Recommendations for Caregivers of Paediatric MS” that aims at improving the quality of care received by children and adolescents with MS and address the challenges faced by caregivers. On 20 November, 2019, World Children’s Day, EMSP published the “Caring for Children and Adolescents with Multiple Sclerosis: Exploring the unmet needs and existing supports for paediatric multiple sclerosis caregivers” report, which identified that families of children and adolescents with MS ask for:

Developing a better understanding and treatment of paediatric MS, as well as supporting and empowering MS carers, have been identified as key priority actions within EMSP’s Code of Good Practice.

To amplify the needs of those affected by paediatric MS, in 2019, EMSP launched a video-campaign that received outstanding attention by reaching out to 150,000 people. In order to drive the European Union and the national governments in Europe to reform the health and social care systems to address these policy and action gaps related to paediatric MS, EMSP launched a petition to ensure the wellbeing of children and adolescent with MS and those who care for them.