This page describes a general methodology for enhancing the healthcare of children affected by cystic fibrosis (CF) within a particular country.
These notes are produced by a UK-based charitable organisation, Child Health International (CHI), and are based on experience in the Russian Federation, Ukraine, Lithuania and India.
The guidance describes a 4-step process for assessing the present state of CF child healthcare and subsequent exchanges of knowledge and experience, leading ultimately to the improved care of the affected children. CHI generally works in collaboration with at least one partner: for example a hospital or other part of the Health Service of the country involved; or an NGO (Non-Governmental Organization) or pharmaceutical company operating in that country.
Step 1: A questionnaire
Completion of a questionnaire enables the current state of healthcare to be assessed. It may identify how many children suffer from CF, who are the leading CF medical specialists, how the healthcare system is financed, what enzymes/antibiotics are available and who pays for them, whether parent support groups exist, etc.
The outcome of Step 1 is an analysis. Subject to this analysis, step may lead to:
Step 2: An initial visit
Arranged by CHI, an experienced CF medical specialist or CHI project manager will visit the host country. Together with the partners, key medical personnel, representatives of relevant parent support groups (Non-Governmental Organisations [NGOs]) and Health Administration officials, a plan of action will be drawn up. This plan will take full account of the country’s perceived needs (obtained via the questionnaire) but is likely to include one or more clinics, attended by CF children, the provision of (relevant local) dietary advice, opportunities to develop physiotherapy techniques, healthcare management (eg, records/ databases), family advice and support and an increase in public awareness of CF, eg in schools.
The outcome of Step 2 is a provisional programme for a visit by a UK CF specialist medical team at some future date.
Step 3: Visit by UK medical team
This team will be led by an experienced Consultant Paediatrician and include a physiotherapist, a dietician and a specialist nurse (all working in the field of child CF healthcare) from one of the UK’s leading hospitals plus a CHI project manager. All their services are provided free of charge. The visit is the fulfilment of the plan developed at Step 2 and principally consists of an exchange of knowledge between the participants. This normally requires the help of competent medical interpreters. More confident, reliable and early diagnosis of CF is usually achievable. Calls by the British consultant on senior members of the National or Regional Health Administration may be helpful both to explain the reasons for the visit and to justify more public funding for the care of the CF children. Some public relations activity is probable (again, to increase public awareness of CF) and a conference for the CF medical fraternity may equally be beneficial. The visit duration does not normally exceed 1 week.
The outcome of Step 3 is an exchange of ways to help and treat children with CF, improve their quality of life and a clearer understanding of what resources and skills are available locally. One concept to be explored will be the idea of twinning local centres with similar centres of expertise in the UK and using modern communications technology to have a continuing, long-term exchange of information. Another, effective option is for key local personnel to visit the UK and see first-hand how their particular responsibilities are discharged there. The identification of such key personnel and clarification of their needs may be the last part of Step 3 and this leads to:
Step 4: Visit by key medical personnel to UK
CHI draws up a programme for the visit, arranging flights, travel and accommodation. There is no cost for the visiting team, other than finding the time to go overseas. The needs determine the content of the programme but it may include briefing on the UK’s National Health Service – who pays for what, the tools for managing CF care, use of equipment such as sweat testing machines and spirometers, the role of the UK’s Cystic Fibrosis Trust (a charitable body, which raises funds for CF research, and provides comprehensive support to children and families www.cftrust.org.uk), attendance at CF clinics, specialist physiotherapy training and CF genetics.
The outcome of Step 4 will be an understanding of how children with CF are cared for in another country, probably with greater resources, but it may well provide ideas for some local low-cost, effective initiatives.
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