La Fe Hospital patients team up to 'save' a rare disease specialist

In times when the connection between patient and doctor is one of the main concerns of the profession, it is gratifying to see how there are those who are still mobilizing so that the doctor who attended them continues in their position, a sign that is clearly evident in the quality From his job.

This is what is happening with Dr. Ricardo Gil, until recently a specialist in the Internal Medicine Service of the University and Polytechnic Hospital La Fe and responsible for years of the Consultation of Minority Diseases. Last August, Dr. Gil was dismissed and transferred to another service - Oncology - within the same hospital, while a doctor replaced him in his previous position.

Following these internal movements, groups of patients with infrequent pathologies, backed by the Spanish Federation of Rare Diseases (Feder), have initiated a campaign to prevent the transfer of Dr. Gil or get him to be linked in some way to this department and to the work he had been doing so far.

According to these associations, the sudden change has generated in them a feeling of "regret" and also of some helplessness in the absence of information.

The official response of the Ministry of Health to the reassignment of Dr. Gil is that «he occupied a position with a temporary contract, pending the publication of a vacancy in this service. This vacancy had to be filled through the public employment exchange, which has happened.

Despite the incontestable legality of the procedure, the feeling of loss is extended, even, to the Internal Medicine section itself. Its head of responsibility, in response to the letters sent by the associations, pointed out that “from our medical clinical area we have tried in advance and with great effort that these events do not occur, and at the time we already raise the corresponding senior administrative hierarchies a reflection on what all this could entail in the face of the quality of care of the patients and on what unwanted consequences it could lead to ».

The response of this department has been, for the moment, the only one that the affected groups have received, who also requested to meet with the management or medical address of the La Fe hospital, without having been attended to date. And although they do not doubt the quality of the professional that has just been incorporated, they fear that they will lose the knowledge and experience that their partners need, affected by different pathologies, in addition to the “excellent treatment offered and the unequaled empathy towards patients”.

From Feder they add that the value of Dr. Gil's experience lies in the fact that “in rare diseases of such low prevalence, the lack of knowledge of the disease conditions in many cases the access to quality health care and treatment. Therefore, it is essential that professionals have a high specialization, as in this case ».

Together, associations and federation launched a petition on Change.org, which has 4,358 signatures collected.

associations

The two groups that have mobilized the most to avoid the transfer of Ricardo Gil are the National Association of Ehlers-Danlos and Hyperlaxity and Collagenopathies Syndromes; as well as the Spanish Association of Hereditary Hemorrhagic Telangiectasia (HHT). The pathologies that his associates suffer were the most numerous among the 110 patients of different diseases treated by Dr. Gil, who also attended cases of Mucopolysaccharidosis, Gaucher Farbry, Tuberous Sclerosis or Neurofibromatosis, among others.

The secretary of the Spanish HHT Association, Ester Carrasco, highlights the specialized care provided by this doctor, in addition to the fact that he has been the one who has facilitated that patients from hospitals without reference units have been referred to their consultations, always being in Contact with associations.

Hereditary Hemorrhagic Telangiectasia disease is hereditary and affects the vascular system, causing a series of malformations in the blood vessels that aggravate with age and cause bleeding (from the most common, which are abundant and frequent nosebleeds, to internal hemorrhages or skin conditions As in so many other rare diseases, there is no cure at the moment, so the protocols and follow-up of each patient are so important.

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