An Individual Healthcare Plan

Whether or not they have an ECH Plan, many children with SMA will have health needs that need careful management and monitoring. This may be from early on or develop later. It’s important anyway that your child’s school is aware of your child’s diagnosis and the current and possible impact your child’s SMA may have – especially what the signs would be that would warn school if your child needs urgent medical attention and what to do in case of any emergency. 

Your child should have an individual healthcare plan (see section on Regular and Emergency Care Planning) agreed with you and the health professionals who support your child. When your child starts school, it makes sense that this should also include the school nurse and /or whoever has responsibility for First Aid and health. This plan (sometimes called a Medical Plan by the school) will set out who will give any medication, what to do in an emergency and any other special arrangements that need to be made, for example the need for your child to use an accessible toilet, assistance with any suctioning or non-invasive ventilaion. It’s important that the plan is shared with and understood by all staff.

As part of this plan, you might want to consider using SMA UK’s Emergency Health Plan App (https://ehpapp.com/) as a way of making sure everyone is up-to-date with your child’s latest individualised plan, as well as the more general MDUK Alert Cards: www.musculardystrophyuk.org/about-muscle-wasting-conditions/information-factsheets/conditions/alert-cards-and-care-plans/alert-cards/

Page last reviewed / updated: March 2021
Next review due: March 2022