Chile 2 project
Improvement of care with a focus on home therapy and MSK care through empowerment of medical and patient community
Partner institution
Complejo Asistencial Dr Sotero del Río, Santiago de Chile
Represented by
Dr José Luis Lamas Castellanos, Haematologist, Chief of the haemophilia programme and blood bank of the hospital
Duration
2 years, Q2 2014 – Q3 2016
Status
Completed
Objectives
- Develop and perform an educational programme for people with haemophilia and their families – focus: home therapy and importance of musculoskeletal (MSK) care/physiotherapy care
- Train healthcare personnel in primary healthcare centres
- Educate school staff and pupils on the condition
- Train healthcare teams in two satellite centres in strategic parts of the country to become trainers of the modules created for people with haemophilia, their families, healthcare centres and schools
- Strengthen the patient organisation to become an active partner collaborating with the medical community and the authorities
Achievements
- Printed and video material for 4 infusion workshops with 65 people with haemophilia and 93 family members
- Exercise manual for 4 MSK workshops with 70 participants
- Workshop with 35 people with haemophilia on emotional aspects in raising children with haemophilia (World Haemophilia Day)
- 1 workshop for 7 teachers
- 1 workshop for 4 primary care healthcare professionals
- Shared project experience with all haematologists from Chile in September 2016
Andrés, a father with severe haemophilia A, is one of the patients who will benefit from this project. Having had a knee replacement operation in the past, Andrés is only too aware of the damage that haemophilia can cause to joints – damage that can be prevented through MSK care. Running his own business – a kiosk and café within the hospital complex – in partnership with his wife, Andrés leads a successful family and professional life. By attending an MSK workshop delivered through the project, he will learn how to avoid the complications that are so often associated with haemophilia when there is a lack of adequate MSK care.
