“Children born with clefts are denied human rights”

One of the core strategic goals of EPF is to ensure health policy reflects the “patients’ perspective”. We want to promote the patients’ viewpoint, including issues around human rights and quality of life, so that it is heard at EU policy-making forums on health economics and health efficacy. At the recent EPF Annual General Meeting there was considerable discussion as to whether EPF should pitch more towards the human rights agenda.

This blog provides an opportunity to present a concrete example of how healthcare rights are interchangeable with human rights.  This is illustrated in the work of the European Cleft Organisation (ECO), an associate member of EPF.

Europe faces a huge discrepancy of care regarding children born with a cleft.  Hundreds of children born with cleft lip and palate inEastern Europeare denied basic access to healthcare.  Their parents are not offered appropriate support and advice in the early days after birth which can result in them being sent to orphanages, often on the advice of medical professionals.   This is a denial of their basic human rights. While surgery for cleft lip and palate exists throughout Eastern Europe (at varying degrees of competency) babies with clefts are disadvantaged after diagnosis because there are no agreed protocols of care or referral mechanisms in place.

To try to address this, ECO recommended the development of a European Standard in early cleft care. Such a standard would map out a clear support and treatment protocol for the first weeks of life, and especially around feeding.  Product standards at national and European level have been around for decades and are universally understood and accepted.  In recent years the European Standards Office in Brussels (CEN) has also been focusing on service standards and the European Commission has encouraged the extension of standards into the healthcare domain. Unfortunately, ECO’s proposal to develop a cleft standard was blocked in the first half of 2011 by the standards bodies in two member states.  ECO questioned whether adequate public consultation had taken place and sought support from the EPF who agreed to write to CEN to bring a wider European patient dimension to this issue. Whilst this raised the profile of ECO’s campaign, there was still opposition to the proposal on the basis that it would interfere with national legislation concerning health policy.

ECO continues to strive for a European agreement on cleft care and is now proposing to put together recommendations using a CEN Workshop Agreement rather than a Standard.  This will carry less weight but could, in future, be used as a basis for the development of standards in individual countries.

Gareth Davies

Gareth Davies

European Cleft Organisation

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