In 2018, European Multiple Sclerosis (EMSP) initiated the project “Recommendations for Caregivers of Paediatric MS” that aims at improving the quality of care received by children and young people with MS and address the challenges faced by caregivers.
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. Initial symptoms have been seen as early as 13 months old, with diagnosis occurring as young as two years of age. 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 best to support those with caring responsibilities for children and adolescents with MS.
To address the emerging needs, EMSP initiated the “Recommendations for Caregivers of Paediatric MS” project, which will allow:
- To identify existing resources as well as unmet needs for caregivers of the growing number of paediatric MS; (see report below)
- To agree on a set of recommendations for caregivers and specialised healthcare professionals;
- To raise awareness on the needs of caregivers through inclusion of the recommendations within EMSPs broader campaigning strategy. (see EMSP’s online channels)
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 the European Multiple Sclerosis Platform’s (EMSP) Code of Good Practice.
There has, however, been little focused analysis on the unmet needs of these caregivers, or the supports that may be available to them in a European context.
The unmet needs of paediatric MS caregivers
A diagnosis of MS at such a young age impacts the quality of life of children and adolescents. What’s more, this condition places extra demands on caregivers-their parents. Parents speak up not only for themselves but for their children as well, asking to:
On 20th November 2019, World Children’s Day, we published these results in the “Caring for Children and Adolescents with Multiple Sclerosis Exploring the unmet needs and existing supports for paediatric multiple sclerosis caregivers” report co-authored by Rebecca Maguire (Investigator from the Department of Psychology, Maynooth University, Ireland), Elisabeth Kasilingam (EMSP Managing Director) and Nora Kriauzaite (EMSP Programme Coordinator).
Petition to address the policy & action gaps
Our findings point to policy and action gaps in the area of supporting paediatric MS caregivers. In particular, identifying means in which caregivers’ needs may be met is something that should be prioritised. These issues are discussed in detail with a view to informing the development of recommendations to support caregivers of children and adolescents with MS.
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, we launched a petition to ensure the wellbeing of paediatric MS caregivers – as well as those who they care for: