On 27 September 2019 we gathered key stakeholders – informal Caregivers, Nurses, Neurologists, MS societies, children and young people living with MS, as well as industry partners – into a workshop to strategise the development of a Consensus Statement on Recommendations to support caregivers of paediatric MS. This event was held in the framework of our ”Recommendations for Caregivers of Paediatric MS” project.

Exploring the unmet needs and existing supports for paediatric MS caregivers

As the first item in the workshop’s agenda, the upcoming “Caring for Children and Adolescents with Multiple Sclerosis: Exploring the unmet needs and existing supports for paediatric multiple sclerosis caregivers” EMSP Report was presented.

The report pinpointed several important needs of caregivers of paediatric MS, including the following needs:

Envisioning empowered paediatric MS caregivers

In the light of these findings, the workshop stakeholders adopted a vision statement, which will guide our work in this area and will be the goal of Recommendations or the European position statement to be developed later in the project:

“All parents and caregivers of children and adolescents with MS are empowered in their role through optimal support, policies and legislation”

Moreover, the vision statement helped the workshop participants to identify the key stakeholders for the project.

The Recommendations Development Group

One of the major outcomes of the workshop was the agreement to form a ‘Recommendations Development Group’, which will develop either recommendations based on a systematic review or European position statement based on found evidence.

Whatever option is agreed by the experts, this work should lead to important outcomes.

Potential outcomes

Among others, these outcomes would include good practice application and improvement in healthcare service support to paediatric MS and their carers in providing adequate information on paediatric MS, paediatric MS treatment options and paediatric MS symptom management.

Nevertheless, these recommendations or position statement could ultimately lead to good practices and improvement in school support to paediatric MS or social service support.

Another key outcome would be the optimization of policy and legislation to ensure the quality of healthcare service models to provide psychological support and adequate information on paediatric MS treatment options and symptom management.

In addition, optimal policy and legislation could also ensure educational support to children and young people affected by MS and the financial wellbeing of their parents and carers.

Raising awareness on the needs of paediatric MS caregivers

In the coming weeks, EMSP will launch an awareness-raising campaign on social media about the unmet needs for paediatric multiple sclerosis caregivers. Ending on International Children’s Day on 20 November 2019, the campaign will finish with the publication of the “Caring for Children and Adolescents with Multiple Sclerosis: Exploring the unmet needs and existing supports for paediatric multiple sclerosis caregivers” Report. Follow @eumsplatform and the official hashtag #pMScaregivers on Facebook, Twitter, LinkedIn, and Instagram!

Interested in engaging with this project? Please contact us at programme.coordinator@emsp.org