Specialist Healthcare & An Emergency Healthcare Plan
For some adults diagnosed with SMA in early childhood, healthcare by an expert team at a specialist neuromuscular centre transfers smoothly over to adult services and continues regularly (often annually). If SMA continues to impact health significantly, specialist appointments and hospital stays may be frequent. For others, it’s not uncommon to have less to do with the health service or to no longer be under the care of a specialist centre – this can happen for any number of reasons, including just wanting to get on with life. Some adults whose symptoms appeared later as a teenager or in adulthood may, once they’ve had a diagnosis, have only since then had the occasional appointment and check-up, or even slipped out of the system with no specialist contact.
If you’re regularly involved with your health team or are at least on the books for regular reviews, the International Standards of Care for SMA (SoC) for those with 5qSMA (Types 1, 2, 3 or 4), recommend that one person from your team who is knowledgeable about what’s likely to happen with your SMA and the best ways to manage it should be your ‘care co-ordinator’. Often this is your neuromuscular consultant.
If you no longer see any specialists but things have changed for you and you feel you would like to talk with someone and be seen, contact your GP and ask for a referral to the neuromuscular service at your nearest adult specialist centre.
The SoC also recommend that anyone with SMA should have an Emergency Healthcare Plan (EHP) - a written plan of action that any medical team can follow if you become unwell. It’s best to agree your plan while you're well. What’s in it will depend on the impact your SMA has on you. You can find more information about what should be in there in Chapter 9 Emergency Care of A Guide to the 2017 International Standards of Care for SMA: www.smauk.org.uk/international-standards-of-care-for-sma
You may find these cards produce by MDUK useful:
Last reviewed: August 2021
Next review: August 2022