Treatment centres will need to carefully schedule treatments, especially the loading doses. If you are unwell, it may mean that they will not be able to start treatment on the expected date, but they should still be prioritised in line with any NHS England priority guidelines.

Recovery time is different for each person. If it is your first treatment, or if it is complex, or you need sedation, you may need a longer hospital stay.

If the procedure is very straight forward and you have received it many times before you may only need a short stay in the hospital.

You can talk this through with your medical team.

You should ask your treatment centre about any possible accommodation options.

If you are in receipt of benefits and/or on a low income, you can get help with travel costs through the Healthcare Costs Travel Scheme. You should ask your treatment centre about any possible accommodation options.

You can also ask your clinical team – in particular the Neuromuscular Care Advisor or Nurse Liaison if there are any other possible sources of financial help.

You should have your treatment as soon as possible after the one you have missed and discuss this with the treatment centre. There should always be at least 14 days between treatments.

The time it takes to see response from treatment varies between people. It depends on many different factors. Some people respond very quickly, within months. Others take longer, up to a year. A rule of thumb is that the more unwell the person or the longer they have lived with SMA, the longer it takes to show benefit from treatment.

See Clinical Assessment Scales and Measures – what’s used, when?

Many hospitals can provide emotional support services. If this service does not exist at your hospital, you should consider contacting your GP for local emotional support services. The SMA patient charities are also a good source of support.