Louise O'Reilly (Dublin Fingal, Sinn Fein)
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183. To ask the Minister for Health the number of persons who have been diagnosed with Ehlers Danlos Syndrome; the supports available to sufferers of the syndrome; why there is no specialist clinician to treat sufferers and when they make an application for treatment in the United Kingdom under the Health Service Executive’s treatment abroad scheme, their applications are refused; and if he will make a statement on the matter. [11115/16]

Simon Harris (Wicklow, Fine Gael)
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The Health Service Executive (HSE) operates a Treatment Abroad Scheme (TAS), for persons entitled to treatment in another EU/EEA Member State or Switzerland under EU Regulation 883/04, as per the procedures set out in EU Regulation 987/09, and in accordance with Department of Health Guidelines. Subject to the EU Regulations and Guidelines, the TAS provides for the cost of approved treatments in another EU/EEA member state or Switzerland through the issue of form E112 (IE) where the treatment is:

- Among the benefits provided for by Irish legislation,

- Not available in Ireland,

- Not available within the time normally necessary for obtaining it in Ireland, taking account of the patient's current state of health and the probable course of the disease.

Applications to the TAS are processed and a determination given in accordance with the statutory framework prior to a patient travelling to avail of treatment. The presence of a rare illness, such as Ehlers Danlos Syndrome, is not of itself criteria for availing of treatment abroad: most rare diseases are treated without any need for recourse to services in other jurisdictions. It is not possible to give a “blanket” statement on applications to TAS for patients with a particular condition.

All patients in conjunction with their Irish based public referring hospital consultant have the ability to apply to the HSE TAS seeking access to public healthcare outside the State. Each application to the HSE TAS is reviewed individually on its own merits and there are no restrictions on a person making an application to the HSE TAS for review and decision. Each application is for an individual episode of care unless otherwise specified by the consultant on the application form.

As the other issues raised by the Deputy relate to service matters, I have arranged for the question to be referred to the Health Service Executive for direct reply to the Deputy. If you have not received a reply from the HSE within 15 working days please contact my Private Office and they will follow up the matter with them.