To improve standards of healthcare for children with cystic fibrosis by deploying suitable UK volunteer clinical and other specialists to share expertise and help develop local potential in ‘client’ countries, taking account of local constraints.
CHI was founded by Roy and Dorothea Ridgway in 1992 in memory of their son, Tony, who died from CF aged 29. They discovered that diagnosis and care of children with CF in Russia was poorly developed and set out to change the situation. They set up The International Integrated Health Association (IIHA) now Child Health International to act as a broker to transfer UK clinical expertise to Russia, tapping into the willingness of CF professionals to volunteer their time within structured projects.
They had considerable success in transforming the CF service in Russia and, later, in western Ukraine. They managed to develop a low cost treatment regime in the client countries – much cheaper than in the UK – relying more on physiotherapy and diet, complemented by a team approach, the reform of administrative procedures and strong parent support groups.
Such a model has since been extended to India, Belarus, Lithuania and Latvia with consideration being given recently to the possibility of similar projects in Albania, Rumania, Bulgaria, Estonia, Hungary, Moldova, Serbia, Kosovo, Bosnia, Montenegro and Macedonia.
Child Health International is far from alone in striving to bring better health to children with CF.
CHI’s role is to arrange for appropriately skilled professionals from the UK to share their expertise and knowledge with colleagues and parents in other countries, through teaching, conferences, practical exchange visits and longer term twinning with a UK CF Centre; and so help them to develop their own services and improve care.
How it starts:
Medical specialists in Britain are willing – often keen – to pass on their experience and knowledge to their counterparts overseas – and, thanks to international conferences and modern communications, they become well aware of the many serious deficiencies in healthcare elsewhere.
Once received any request for assistance will be subject to a feasibility study carefully assessed by CHI’s medical advisers. This will involve visits and establishing close contact with local professionals and administrations. Close collaboration between all parties is essential, often involving locally based NGOs who will be helpful in subsequent assessment of the project and necessary changes.
Such collaboration is vital to good and effective planning. CHI is primarily a development and delivery organisation and will always to seek to build on the local healthcare infrastructure to ensure improvements to health care are sustained. The relationship is very much two way to determine the best style of intervention. Equally, a clear exit strategy is essential, leaving local groups empowered and self-sufficient, in the knowledge that they can call for further help if required.
Project teams draw on the expertise of health clinicians, administrators and project managers to deliver the on-the-ground help.
In practical terms CHI will organise and pay for on site teaching clinics, advice on diet, physiotherapy and organisational arrangements; targeted exchange visits to centres of excellence in the UK and training programmes; and conferences aimed at disseminating good practice. The ideal longer term relationship is one where a centre in the UK is twinned with a service overseas thereby establishing longer term relationships of mutual benefit.
CHI recognises the economic realities of the host country’s health system. Many drugs and enzymes required to improve the quality of life are unaffordable to the child’s family and not available from local health services. Part of CHI’s role is to work with governments, local administrations and pharmaceutical companies to make medication more accessible and affordable.
However, every effort is also made to identify alternative or complementary approaches such as advice on diet, based on locally-available products, and physiotherapy administered by parents, which can make a big difference.
The key role of parents
Parental involvement and support are critical to better care. The understanding of what can be achieved and how, especially in the way of diet and the administration of hands-on physiotherapy, can significantly facilitate better, on-going care at home in support of any institutional treatment. The creation of self help groups to share experiences and offer mutual support is most important for what can be a lonely, energy-sapping and protracted process in the absence of any other support and help. Such groups can become skilled advocates in seeking health policy improvements locally and promoting greater understanding in their wider community of Cystic Fibrosis, and CHI has a key role to play in developing such groups.
CHI’s projects so far have demonstrated considerable success. It has been considering whether, looking ahead, it does more of the same, or changes its approach in some way, or extends the scope of its activities either geographically or, more importantly, in terms of the childhood ailments its work addresses.
Range of CF treatment:
The following schema sets out how treatment is targeted where the greatest number are impacted by relatively basic (though not necessarily easy) interventions at the bottom of the pyramid, with numbers decreasing as the pyramid narrows and interventions become more specialised, sophisticated and usually more expensive. CHI works throughout this spectrum except for the very top end, which would include transplant/surgical interventions and research. CHI continues to believe that such an approach is appropriate and where it can make most impact.
CHI is conscious that even in the field of Cystic Fibrosis it is not alone in providing help. There are various other organisations working internationally in the field although CHI’s modus operandi is possibly unique. It has developed a specific expertise, which works well. It is possible this approach could be adopted in response to other childhood ailments such as:
Other Medial conditions:
CHI has occasionally responded to requests for assistance in other areas such as Cerebral Palsy Diabetes, Epilepsy Asthma, Heart surgery, Brain surgery andHIV/AIDS. It believes, however, that its primary focus should remain Cystic Fibrosis but does not exclude the possibility of responding positively to other related conditions.
Working with others:
CHI is certainly keen to explore the option of working in partnership with other organisations such as the Cystic Fibrosis Trust (UK) and EuroCareCF. It has considered the possibility of merger with another charity but believes the distinct nature of its work continues to make a very positive contribution in the field, without distracting from the work or resources of others. CHI believes working in this distinctive way will continue to inspire people to support its work and make donations.
CHI is working or has unfinished business in India, Belarus, Lithuania, Latvia and Ukraine.
Countries where CHI might undertake projects include Albania, Rumania, Bulgaria, Estonia, Hungary, Moldova, Serbia, Kosovo, Bosnia, Montenegro and Macedonia. Whilst this focus is on Eastern Europe, enquiries have also been made about projects in Central and South America.
CHI is receptive to approaches from these and other countries and will assess its response using the principles and working practices set out in this strategy; in particular in terms of
- suitability – ie fit with CHI’s vision, mission and values;
- impact on existing projects;
- availability of suitable human resources;