Denis Naughten (Roscommon-Galway, Independent) | Oireachtas source

On my own behalf and that of the Regional Group, I echo the condemnation of the attack on the young man that took place in County Meath. I wish him a speedy recovery.

Deputies were yesterday told of the perverse situation whereby doctors are sitting in front of computers and inputting numbers instead of providing vital care to patients with rare diseases. That is, sadly, a practice that is far too common within our health services. While most rare diseases appear early in life, with about 30% of children affected not reaching their fifth birthday, many are not diagnosed until adulthood. Despite the phrase, rare diseases are not rare. In Ireland, about one in 12 people are, or at some stage in their lives will be, affected by such a condition. This means that approximately 825,000 Irish people are impacted by a rare disease when family members, many of whom are carers, are included. The west and north-west of Ireland have one of the highest incidence rates in Europe.

Even when patients get a diagnosis, up to one third of people living with rare diseases have indicated they do not have access to expert medical care here in Ireland. The expertise does not exist in Ireland for many of these conditions because of the rarity of the disease. To overcome this, the EU cross-border directive mandated the establishment of European reference networks, ERNs, to link rare disease clinical expertise across the EU. The main goal is to bring that expertise to patients in their home countries rather than requiring them to travel abroad. Twenty-four reference networks for a broad range of rare diseases have been established at EU level and, to date, Ireland has a clinical lead representative in 18 of those. We must constantly update patients' medical records on this EU network or else Irish patients' access to the most up-to-date medical care for their condition will be withdrawn. Sadly, there are still patients who cannot access this expert care because their medical information still needs to be uploaded onto this vital EU-wide network. It also leaves Irish patients, whose conditions are covered by the six EU rare disease networks in which Ireland is not participating, excluded from accessing the best available medical care.

To address this, we need a health data system and staff who can upload patient information onto the EU reporting and audit network, thus ensuring Ireland's membership can be maintained and built upon to benefit all patients with rare diseases, regardless of which hospital they attend in this country. I am asking that we stop pulling consultants away from treating the patients with some of the rarest medical conditions in the world to sit in front of a computer filling out online forms and instead employ skilled administrative staff to do this on an integrated patient data system across our health service, saving time, money and, most importantly, people's lives.

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