Regular & Emergency Care Planning

Childhood onset 5q SMA varies greatly in its impact. Now that some children are receiving drug treatments, there may be even greater variations. When your child’s medical team is discussing and deciding with you what's the best care and management for your child, they think not only about your child’s ‘clinical classification’ (such as SMA Type 1, 2 or 3), but also what physical milestones your child has reached. For simplicity, these milestones are:

  • non-sitters - those who are unable to sit
  • sitters - those who are able to sit but not walk
  • walkers - those who are able to walk 

Care Planning

Soon after your child’s diagnosis, you should have had the opportunity to discuss management and care options in open consultation with their multi-disciplinary medical team. Discussions and reviews of any decisions you have made should take place on an ongoing basis – how often will depend on the impact of your child’s SMA. For example, if your child is a 'non-sitter' who has difficulties with breathing and swallowing, you’d expect to have more frequent discussions and a more detailed care plan than if your child has no breathing and swallowing difficulties.

The Guide to the 2017 International Standards of Care for SMA: www.smauk.org.uk/international-standards-of-care-for-sma for those with 5qSMA (Types 1, 2, 3 or 4) recommend that all care assessments and any visits should be co-ordinated by one of the medical team who is knowledgeable about the likely progression and any potential challenges of your child’s SMA. This is generally the paediatric neurologist or in some centres a ‘care-coordinator’.  For practical reasons, some of your child’s care may be managed more locally by your GP or other local services. This works very well if there is good communication.  You can read more about setting up care and support on page 16 of the Guide – in Chapter 2, Genetics and Diagnosis.

Emergency Healthcare Planning

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 should be able to state your wishes in the plan. It should be agreed between you and your specialists while your child is well, involving your child if they’re old enough and have an appropriate level of understanding.  
The detail and topics covered in your child’s EHP will depend on the impact of their SMA. You can read more about what this might include in Chapter 9 Emergency Care of the family-friendly Guide to the 2017 International Standards of Care for SMA: www.smauk.org.uk/international-standards-of-care-for-sma This is for those with 5qSMA (Types 1, 2, 3 or 4)

  • Emergency Health Plan App

SMA UK have developed this app which you can use to upload a copy of your child's latest EHP to your mobile / tablet so that if you find your child is in need of care in unfamiliar surroundings, you can bring medical professionals up to speed accurately and quickly.

The app follows the NHS guidelines for data privacy and was designed with support and input from Dr Alex Murphy, our Clinical Care Research Correspondent. It's free to download on Android and iOS. Find out more here: https://ehpapp.com

  • Emergency Alert Cards

You may also find these cards produced by Muscular Dystrophy UK useful.
Find out more here: www.musculardystrophyuk.org/about-muscle-wasting-conditions/information-factsheets/conditions/alert-cards-and-care-plans/alert-cards

Page last updated: July 2019