Special programmes

People with acute SMA often require respiratory support. In Poland, it takes place at home – the patient is included in the so-called home ventilation programme under which they are provided a ventilator (a biPAP) along with necessary accessories and regular medical visits. Enrollment in the programme is done on a clinician’s request. SMA Foundation Poland can help you get into the programme.

People who have gastrostomy or are tube fed are enrolled in an enteral feeding programme under which they receive a pump, accessories, and special feed. Such a patient is looked after by gastroenterological clinics.

The Polish health care system, unfortunately, does not finance cough assists, and many doctors are not familiar with their use in SMA anyway.

Patients in Poland receive financial support for orthoses, spinal jackets, etc. They are provided by private companies. The level of reimbursement these institutions receive from public funds is often insufficient for the high quality orthoses needed in SMA, and so the family have to pay the difference out of pocket.

Rehabilitation equipment is also financed from public funds and, likewise, these funds are often insufficient. Please enquire about the equipment you need directly at orthopaedic supply stores. It is also very helpful to consult other families with SMA before buying.

Expensive equipment, e.g., electric wheelchairs, stair climbers etc., is financed by the state through periodic programmes and usually up to a certain limit (eg 50–80% of the actual price). The application is submitted in Polish online when the program is enrolling.