Setting up Care and Support
SMA is a complex condition which affects people differently. Best management requires input from many different health specialists (Figure 1). Anyone diagnosed with SMA should be referred to a specialist neuromuscular clinic, and other relevant specialties. These may include specialists in:
- Breathing (respiratory care)
- Nutrition (gastroenterology and dietetics)
- Bones and muscles (orthopaedic care)
- Rehabilitation (physiotherapists (PT) and occupational therapists (OT))
Families and adults affected by SMA should also be provided with genetic counselling.
Specialists should work together as a multidisciplinary team who will not only consider your or your child’s medical needs but also take into account and be respectful of any social, cultural and spiritual needs you may have. The team may also include specialists in palliative care who have expertise in the control of complex symptoms. Palliative care is often only associated with end of life care when in practice it has a much broader focus to help a person achieve good quality of life.
Palliative care teams are there to help ensure a person’s life goals match treatment choices and to provide help to overcome challenges, it should be seen as a complementary service to other forms of medical support.
Soon after diagnosis you should discuss care options in open consultation with your multi-disciplinary medical team. This should be an ongoing basis. Choices for or against interventional care should be revisited with changing circumstances if you or the medical team think it appropriate.
It is recommended that all care assessments and visits should be co-ordinated by one of the medical team who is knowledgeable about the possible progression and potential challenges of SMA, this is generally the neurologist, paediatric neurologist or in some centres a ‘care-coordinator’.
You should also be given information so that you have the option of:
- Contacting SMA-related support and advocacy groups
- Accessing trusted online resources for more information about management and care
- Discussing any clinical trials that may be appropriate