Mary Moran (Labour)
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I welcome the Minister of State to the House and hope he can provide me with some good news on the matter I am raising on the Adjournment. I wish to draw attention to the plight of a young man I met recently, a 22 year old constituent of mine suffering from a rare, debilitating condition called Ehlers-Danlos syndrome, hypermobility type. This young man is severely disabled as a result of this condition and displays marked, widespread joint hypermobility. Basically, he is constantly suffering dislocations, up to 18 times per day. As he is prone to recurrent dislocations he frequently requires hospital accident and emergency admissions, particularly for his left shoulder. This is the only joint, according to his mother, that he cannot replace himself. It is pitiful to see such a young man in this condition. While he can put his fingers back into place, he cannot put his shoulder back and every seven to ten days, he is admitted to Our Lady of Lourdes Hospital, where he has to be completely anaesthetised so that his shoulder can be put back into place. This has been ongoing since he was diagnosed with this rare condition. It has interfered with his schooling and prevented him from taking part in the normal, everyday activities that most young people engage in.

After a case conference of consultants in 2012, it was accepted by the consultants that there was no one in Ireland who could treat this young man and he was referred by a consultant orthopaedic surgeon to Britain for treatment. I have all of the documentation relating to this referral. His travel was approved by the treatment abroad scheme and he went to Britain. It seemed that a solution had been found and that he could undergo a rehabilitation programme which was due to commence in September 2012. He went to England and was assessed by an orthopaedic team there. However, on 14 September last, the day before he was due to travel for his treatment, he was informed that his costs would not be covered by the scheme because the scheme did not cover second opinions. Every time I have raised this matter, I have been told that the scheme does not cover a second opinion. However, I have a letter from the orthopaedic consultant concerned who wrote to the HSE and said that he was puzzled by the HSE's decision. He went on to point out that there is much correspondence in regard to this young man's problem and his application for treatment abroad. The consultant confirmed that the young man has been seen by every specialist upper limb surgeon in Ireland, that his case was discussed at a shoulder conference and on foot of that case conference, his treatment in Britain was arranged. The consultant argued that, in view of the fact the young man has already been seen by every upper limb specialist in Ireland, the decision and comments of the HSE were difficult to understand.

I have read through all of the correspondence and I met the young man in person when I received extremely distressed correspondence from his mother. It is dreadful that a 22 year old is frequently confined to a wheelchair when the dislocations become too much. I am at a total loss as to why this case cannot be examined again. He received a letter telling him to reapply for the scheme or to return to Cappagh Hospital or the orthopaedic surgeons he has already seen. However, it is acknowledged, in writing, that he has been seen by every orthopaedic surgeon in the country.

I hope the Minister of State can provide some new insight into this case and, more importantly, some good news for this young man who is suffering terribly. As I have already said, his condition has interfered with his life in a physical way but lately it has begun to affect him mentally. In fact, there has been a danger to his life in recent months. He feels at a total loss and that nobody can help him. I do not know if this is a question of finance but one must ask how much it is costing the HSE to bring this man through accident and emergency and into theatre every week, with all of the associated expenses, including anaesthesia? I would be really grateful if some solution could be found so that this young man can lead the active life to which he is entitled and which he could lead, if given the correct treatment.

Dinny McGinley (Donegal South West, Fine Gael)
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I thank Senator Moran for raising this matter and for giving such a comprehensive description of this young man's situation.

The HSE operates the 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 the Department of Health guidelines. Within these governing EU regulations and the Department of Health guidelines, the TAS provides for the cost of approved treatments in another EU/EEA member state or Switzerland through the issue of form S2, formally known as an El12.

The TAS allows for an Irish-based medical consultant to refer a patient who is normally resident in Ireland for treatment in another EU/EEA member state or Switzerland, where the treatment in question meets certain criteria, is not available within the State or is not available within a time normally necessary for obtaining it. Following clinical assessment, the referring consultant certifies the following: the treatment is medically necessary and will meet the patient's needs; the treatment is a proven form of medical treatment and is not experimental or test treatment; the treatment is in a recognised hospital/institution and is under the control of a registered medical practitioner; and the hospital outside the State will accept EU/EEA form S2. The application to refer a patient abroad has to be assessed by the HSE normally within 15 to 20 working days and a determination given before that patient goes abroad. Appointments should not be scheduled prior to a decision being reached on an application.

The situation with this particular case is that the TAS of the HSE received an application from the person involved and issued a letter informing him that, in line with the governing EU regulations and Department of Health guidelines, his application did not meet the criteria for the scheme. This decision was confirmed in a review of the case by the general manager of the TAS. In order to advance this case, a letter was issued by the TAS to the person concerned following the review.

The letter recommended that he seek a referral to the tertiary services in Ireland in the first instance and confirmed that should his consultant identify a treatment, as opposed to a request for a second opinion, then he is free to re-apply accordingly. The HSE is not permitted to transfer a patient's care abroad without recourse to the EU regulations referred to above. Until the HSE receives a valid application from the person it is not possible to progress the matter any further at this stage.

Mary Moran (Labour)
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I am decidedly disappointed with this response. It is certainly not clear. The Minister of State said he must go back to look for tertiary services, but he has done that and we have the letter to prove it. The surgeon has stated that he has seen everyone in Ireland. The treatment sought is in one of the most well-known hospitals in England. Two consultant orthopaedic physicians, one a professor, have signed letters stating that he is in need of this treatment. I am at a loss to understand the response to a request for something that is obviously minor, although perhaps I should not say minor. I cannot fathom why it cannot be considered. I strongly call on the Minister of State to take this back to the Minister for Health and perhaps open up correspondence with the family involved to encourage them. They are not going to accept this. They have given all the details. I call on the Minister to enter into a correspondence to help this young man achieve the best of his ability rather than subject him to a life of pain. He is experiencing excruciating pain on an ongoing basis and yet this treatment could help him and his family. I have met his mother, who is totally distraught at this stage, as I or the Minister of State would be if one of my children or his children were in the same situation.

Dinny McGinley (Donegal South West, Fine Gael)
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I understand the Senator's concern. I realise the Senator has met this young person and is aware of the trauma he is experiencing. I believe the door is not firmly shut and there is an opening as far as I can see. As I have stated, until the HSE receives a valid application from the person it is not possible to progress the matter any further. This means if a further, valid application is submitted it will be considered by the HSE. All I can say at this stage is that Senator Moran's concerns and the points made will be brought to the attention of those whose responsibility it is to decide on the matter.

Mary Moran (Labour)
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I appreciate that.