Belfast Telegraph

Charity for rare diseases blasts Ulster leaders over EU consultation 'failure'

A CHARITY dedicated to helping those with rare diseases has hit out at the Health Minister and MLAs for failing Northern Ireland in the provision of services to those who have rare diseases.

Members of the charity point out that only one of our elected representatives -ndash; East Belfast MP Naomi Long -ndash; made a representation to the consultation process.

Terry Hoey, President of the Cavan Hoey Trust, whose grandson suffers from x-linked lymphoproliferative syndrome (XPL) and Epstein-ndash;Barr virus (EBV), said: "There has been a lot of work from EU member states on a rare disease consultation [The Krakow 2010 European Conference on Rare Disease].

"I've been trying to find out why our MLAs didn't do a consultation themselves.

"Every country in the EU took part in this, including the UK."

He said that the Northern Ireland NHS was devolved to the Northern Ireland Assembly, so it's well within the Health Minister's remit to take action on the issue -ndash; or at least to have taken part in the EU consultation process.

"The NHS took part and the British government did too, but when it came to Northern Ireland -ndash; Northern Ireland didn't take part in it," he said.

"Our Assembly left it to other UK groups to do it. On reading the responses to the consultation it looks as if Northern Ireland hasn't to look after anything to do with rare diseases.

"And we're talking about major diseases here, some ultra-rare diseases."

A DHSSPS spokesperson said: "The Department of Health in London has taken the lead for the UK in responding to this recommendation from the Council with input and agreement from the three devolved administrations' health departments including the Department of Health, Social Services and Public Safety in Northern Ireland.

"Northern Ireland has therefore been fully engaged in this work. A UK-wide public consultation on the rare diseases plan concluded in May 2012 and the consultation responses were published by the Department of Health (London) on November 16, 2012. Work has now commenced to produce the final UK Plan by mid-2013 in line with the European Council Recommendation. The Department of Health in London represented the UK's interests at the 5th European Conference on Rare Diseases.

Terry said: "The UK NHS has 36 units to deal with rare diseases. In the consultation document it says that because the Republic of Ireland is another member state, we in Northern Ireland could link up with them -ndash; they don't have a unit dedicated to rare diseases either."

"I can't believe every other country in the EU had representatives but we didn't -ndash; the consultation has been going on for years. And we've got MLAs who are MEPs who should have been looking after us in the EU. There are four lines relating to Northern Ireland in the entire consultation document," said Terry.

Chair of the Cavan Hoey Trust, Godfrey Brockgadd, said that attempts to use facilities in the Republic would be difficult for political reasons but that "there shouldn't be a border when it comes to a child's life being on the line".

Terry added: "This is a very important situation in Northern Ireland. MLAs have shown that they have their heads buried in the sand on this issue and the issue needs to be highlighted or our lives won't be worth anything."

His wife, Maureen said: "I'm glad that Cavan lived in England -ndash; even there his diagnosis took longer, but we're lucky he lives where he does. The resources we have at the minute are not enough and it could take years for Northern Ireland to catch up with Great Britain."

A DHSSPS spokesperson said:"Given the unique nature of each of the diseases concerned and the very limited numbers of sufferers, it is not envisaged that future developments will give rise to any significant change in the approach to treating rare diseases.

"The way forward is likely to be characterised by a greater degree of co-operation in terms of diagnosis, treatment, codification, research, development of specialised drugs and centres of expertise between those involved in treating sufferers in Northern Ireland and their counterparts in the rest of the EU and beyond."

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