December 2007 – Cristina Lería – Euskadiko PKU-OTM Elkartea
We consider as rare diseases those with low prevalence (less than 5 per 100,000 births). Out of all of them our partnership brings together the inborn mectabolic disorders. At the moment more than 125 patients of Bizkaia, Gipuzkoa, Araba and some other neighbouring communities are treated by the metabolic unit of Cruces Hospital. Being so few the patients affected by each of the diseases it is essential to group them in order to be addressed and thus specialists may have enough experience
In 1974 they began to treat these pathologies within the Cruces hospital paediatric service. During more than 30 years they have saved many lifes and prevented neurological problems as well as other problems. If we compare this reality with that of the surrounding communities, we can ensure that Cruces Hospital has been a pioneer and leader in the treatment of these pathologies. All thanks to the work of a few specialists (initially one, Dr. Sanjurjo and currently three) who have managed to do a quality clinical and research work recognized internationally.
As a result, we have been weathered the storm, and those children have become adults (there are more than 40 patients over 18). This being a great story, throws before us and before the Administration a new challenge. Monitoring of these patients is not just up to pediatricians who so far they have treated them, the only existing specialists in these diseases, but it should be referred to some specialist in inborn metabolic disorders adults. The difficulty lies in that there are no such specialists. There is no one with sufficient training and experience in order to ensure a minimum level of quality and safety the service to which they are entitled.
All experts who work these pathologies both in the country and internationally, have been warning for many years about this problem and considering what would be the best solution, the creation of units of reference in which in addition to expert pediatricians, some adult specialists would be are incorporated and trained and afterwards runthe adult service.
For all these reasons and with the intention of providing a decent solution and future, our specialists made an offer to the Administration: the creation of a REFERENCE UNIT for these pathologies in the hospital of Cruces, as allowed by the Royal Decree 2006 / 1302. After several meetings between specialists and the Administration it seemed that the Department of Health was going to give the go-ahead
What has happened that this unit is still not operative? Apparently, someone with arguments against its creation has managed to stopt the project.
Because all this, our specialists, that so far have treated us without the necessary legal coverage (they are pediatricians and they can not attend patients over 14 ), have been committed to take a drastic measure. From next January and with our consent, they will discharge all patients older than 18 so they are transferred to adults.
Who will take care of our monitoring from now on? We are aware that there is no one with the necessary training and experience For 30 years the specialists who attended us were formed side by side with us, what we do not want is to go through all this again and be guinea pigs for the training of adult specialists.
