Child Health International, established in the 1990s, aims to improve care for children and young adults living with cystic fibrosis, by facilitating communication and knowledge transfer between specialist and multidisciplinary CF teams in the UK with medical centres and parent groups overseas.
A world where all children and young adults living with cystic fibrosis have access to the best possible CF care, where children are given the opportunity to enjoy their childhood and can look forward to their future as adults.
To minimise geographical inequality in the care of children and young adults living with cystic fibrosis. We do this by supporting collaborative partnerships between UK multidisciplinary cystic fibrosis teams and overseas medical centres seeking to develop local potential and improve care within their own country.
- Respect for all.
- Forward looking, developing local potential.
- Effective management and planning.
- Good governance, acting with integrity and openness.
What is cystic fibrosis?
Cystic fibrosis (CF) is a life-shortening genetic condition. There is no cure!
CF changes the body’s ability to regulate the salt content of cells, causing an abundance of thick mucus to build up in the lungs, digestive system and other organs. This, in turn, can lead to fatal lung disease, malnutrition and a host of other symptoms that can vary hugely from person to person.
There are currently around 10,600 children and adults living with CF in the UK. However, 1 in 25 of us carry the faulty CF gene, often completely unaware. When two carriers have a child, that child has a 1 in 4 chance of having cystic fibrosis.
What problem does Child Health International aim to fix?
Cystic fibrosis used to be considered a childhood disease in the UK. Children born with the condition rarely reached their teens, let alone adulthood. However, improvements in care mean that a child born in the UK today with cystic fibrosis can now expect to live into their 40s, 50s or even beyond, enjoying a heathier and more active lifestyle.
Unfortunately, many countries have not seen similar improvements in care, with child mortality rates in some cases lagging 30 years behind the UK.
While modern CF drugs have played an important role in improving life expectancy in the UK, the greatest changes can be attributed to improved nutrition, the rigorous use of lung clearance exercises and improved case management. These are inexpensive techniques that, with the help and guidance of experienced multidisciplinary teams, can be readily incorporated into overseas medical practices.
What does Child Health International do?
Child Health International works with specialist multidisciplinary cystic fibrosis teams in the UK, where high incidence rates have accelerated medical developments, building international partnerships that facilitate peer-to-peer learning. By doing so, we support overseas teams to both improve cystic fibrosis care in their local communities and at a national level.
Child Health International works with specialist CF centres across the UK, pairing them with overseas medical teams, primarily across Russia and Eastern Europe. Our work has successfully built relationships between centres and between medical teams, resulting in clear and significant improvements in cystic fibrosis care. Activities have included specialist visits and exchanges, joint clinics, training or simply sharing a new perspective on a difficult problem. Each project is different and our teams are continually exploring new ways to drive positive change.
Prioritising a ‘basics first’ approach to care
Priority is given to low cost, highly effective approaches to CF care that are sustainable within the local environment.
Working collaboratively with the local team we can identify key priorities for each project, ensuring maximum benefit to the CF community within the resources available. This could involve training in physiotherapy, advice on diet, or simply helping to set up an effective database for patient monitoring.
Dr Chris Rolles explains cystic fibrosis and Child Health International’s bottom-up approach to CF treatment in this short video.
How do I get involved as a CF specialist?
Whether you are based abroad seeking help, or in the UK with skills you can share, the best way to find out more is to get in contact by email to firstname.lastname@example.org
What can I do to help as a member of the public?
All of the specialists we work with give their time and expertise for free. Child Health International is run and managed by volunteers. Your money will make a genuine impact on the lives of children living with cystic fibrosis. Please donate today!
Read a detailed description of Child Health International’s work –>