Any child with SMA should have an Emergency Healthcare Plan (EHP) – a written plan of action that any medical team can follow should a child become unwell. You can read more about this if you scroll down on this page.

Sometimes families need to take their child to Accident and Emergency (A&E) Services at a local hospital. Frequently, clinical staff there will not have come across SMA and we were hearing many distressing stories from families about the difficulties in accessing appropriate care. Our Information Team has therefore worked with clinical experts to produce an information sheet for families to give to the A&E team. It provides information that will assist them with their assessment of the needs of a child with SMA. You can download this and have it ready on your phone or bookmark it:

Download “Essential Information for Emergency Services when Assessing and Caring for a Child who has Spinal Muscular Atrophy” >

You can also request a printed copy to be sent to you if you’d prefer – see our Information Order Form.

This information sheet draws on the 2017 International Standards of Care for SMA which were written before disease-modifying treatments became widely available, and brings the emergency care information families need, up to date.