The essentials
- Organise your questions by urgency rather than trying to solve everything at once.
- Ask for a named point of contact and a written follow-up plan.
- Discuss travel, cost, and home circumstances so the plan is practical.
These are practical suggestions to adapt with your family and care team. For severe breathing difficulty, choking, or sudden serious illness, seek emergency medical care immediately.
Give the next appointment a clear purpose
It is easy to leave a consultation with more information but no clear next step. Before attending, write down the three things you most need to understand. Examples might be what the diagnosis means, which assessment comes next, and who to contact if your child becomes unwell. Put these questions at the top of your notes and show them to the clinician at the beginning.
Bring a short, useful account
Prepare a one-page timeline with dates where possible. Describe what changed, when it changed, and how it affects everyday activities. Bring previous reports, referral letters, discharge summaries, and the medicines currently used. If there are videos that help show a concern, ask whether the clinician would find them useful. Do not delay seeking care in order to record a video.
Bring another trusted adult if you want help remembering the discussion. Decide beforehand who will ask questions and who will write down answers. If the person living with SMA can participate, make space for their priorities and questions too.
Ask how the team will fit together
SMA care can involve several disciplines, including neurology, respiratory care, rehabilitation, nutrition, and psychological support. Ask which professionals are relevant now, what each referral is for, and how their advice will be coordinated. A list of specialists is less helpful than a clear sequence of appointments.
Source: SMA Europe: standards of care and the multidisciplinary team ↗
Make the Nigerian logistics visible
Tell the team if you travel from another state, rely on someone else for transport, or need to plan time away from work. Ask which appointments can be coordinated on the same day and which must happen promptly. Before leaving, confirm where each referral goes; two clinics in the same hospital may have different booking processes.
Ask for written estimates for tests and visits where available. Clarify whether a quote covers consultation alone or also laboratory work and review. If an insurer or employer scheme is involved, ask what written approval is needed before you pay. Record the answer and the person or office that provided it.
Leave with an action list
Read your notes back in your own words. This is a useful way to catch misunderstandings without needing to remember every medical term. Ask the clinician to clarify anything that sounds contradictory to previous advice.
- What is the first action, and how soon should it happen?
- Who arranges it: the hospital, a clinician, or our family?
- Which changes require urgent assessment, and where should we go?
- Who can answer questions between appointments?
- When will the plan be reviewed?
Create a handover for home
After the visit, share the agreed plan only with the people who need it. Write down responsibilities: who books the appointment, collects a report, arranges transport, or supports siblings. Keep a space for unanswered questions rather than filling gaps with guesses from social media. If instructions are unclear, contact the care team for clarification.
Take this with you
Your practical checklist
- Top three questions written down.
- Reports, referral letters, and medicine list packed.
- Transport, clinic day, and booking requirements confirmed.
- Written next steps, contact details, and review date recorded.
About this guide
Prepared for SMA Hope’s Nigeria-focused knowledge hub. Sources were checked on 22 October 2026. Hospital services, prices, and treatment access need direct confirmation; no provider availability is guaranteed.
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