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

Recovery time is different for each patient. If it is the first time you have been given the treatment, or the procedure is complicated, or you need sedation you can expect you may need longer in hospital. If the procedure is very straight forward and you have received it multiple times previously then a minimal time in hospital may be all that you need. You can talk this through with your medical team.

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

If you’re 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 – or SMA UK’s Support & Outreach Team 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 therapy is variable between patients and depends on many different factors. Some patients respond very quickly, within months, others take longer, up to a year. A rule of thumb is that the more unwell the patient or the longer the patient has lived with SMA, the longer it takes to show benefit from therapy.

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.