Covid-19: AFM-Telethon innovates to support families

Covid-19: an innovative support model

AFM-Telethon offered, from the start of confinement, dedicated support to protect the most vulnerable and promote interactions between families and health and medico-social professionals.

Nearly 119 Health Pathways Referrals in 17 Regional Services, more than 900 volunteers concerned with neuromuscular diseases, and doctors from the Neuromuscular Disease Reference Centers interacted with them every day to support, monitor, and secure patients.

Some of which are at very high risk due to cardiac and respiratory damage linked to their pathology. AFM-Telethonhas thus set up with more than 15,000 families affected by neuromuscular diseases  :

A “Home family” line is available 24 hours a day during the confinement period and nearly 23,000 calls made directly to families: 0 800 35 36 37 (toll-free number, free call)

  • Home visits were quickly replaced by “home visio”
  • A psychological support unit
  • Daily interactions with medical experts
  • The creation of practical information and prevention sheets delivered in real-time and through ministerial decisions
  • Distribution of nearly 500,000 masks intended for caregivers …

“After confinement, the caregivers are exhausted”

“We had to anticipate and adapt very quickly to avoid any risk of contamination by the coronavirus of family carers and the most vulnerable people,” explains Géraldine Merret, head of the Family Actions Department at AFM-Telethon.

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We achieved this thanks to the mobilization of everyone and in particular of our many volunteers in the field. It was essential to be alongside families to explain the importance of confinementbarrier gestures to avoid contamination.

After the emergency, we continue our support for the return to the hospital of patients suffering from neuromuscular diseases and rare diseases. who resume their medical and paramedical follow-up.

We are also planning our advocacy with the public authorities on the support of caregivers, exhausted by these long weeks of confinement and who need additional financial assistance, respite solutions, to best support their loved ones. What we have put in place for Covid-19 will allow us to innovate more and also improve our service offering.

To imagine other methods of support for the future, in particular through video information, other forms of support, particularly psychological, etc. ”

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