Mary Moran (Labour) | Oireachtas source

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.