Friday 9 December 2016

Sick Irish children getting UK care may be hurt by Brexit fallout

Rachel Lavin

Published 17/07/2016 | 02:30

Advocates for patients suffering from rare diseases are warning that Brexit could negatively impact Irish patients, including children. Stock photo: PA
Advocates for patients suffering from rare diseases are warning that Brexit could negatively impact Irish patients, including children. Stock photo: PA

Advocates for patients suffering from rare diseases are warning that Brexit could negatively impact Irish patients, including children, receiving specialised care in the UK.

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Dr Niamh O'Brien, whose nine-year-old daughter Lucy attends Sheffield Children's Hospital, said: "It's a huge fear. One of the first things that crossed my mind when Brexit happened was, how will this affect my child?"

Lucy suffers from a rare bone disease called Osteogenesis Imperfecta and has been attending Sheffield for specialist care since birth. Because of extended waiting lists in Crumlin Children's Hospital, she may need to attend Sheffield for further surgeries.

"So many people in Ireland go to the UK for specialist care. There's so many academic, medical and research ties between the UK and Ireland. It's a very worrying time from that point of view,"said Dr O'Brien.

"There's a huge amount of cost in going abroad so if you had to go even farther for treatment and you're going somewhere where you'd have absolutely no support for families who already have enough challenges, I think it would be scandalous."

The chair of the Genetic and Rare Diseases Organisation, Avril Daly, echoed her concerns, listing potential obstacles such as non-EU healthcare funding, questions over the freedom of movement for patients, and the loss of EU research funding to specialised areas as issues which may inadvertently affect the large network of Irish patients attending specialized clinics and seeking clinical trials in the UK.

Ms Daly, who is also on the board of the European Rare Diseases Organisation, said: "In general, it's very worrying. We don't know where we are now. Patients in Ireland receiving treatment in the UK are very concerned. The last thing they need is this kind of stress, but at the moment we're not getting clarity."

She also pointed to the recent move to establish the European Reference Network (ERN), facilitating a cross-border directive to enable patients to get access to expertise regardless of where they live in Europe, which was signed into law in 2014.

"The ERN would allow for free movement of patients across the EU, so the reality is EU citizens all have the same rights and same access to healthcare. This is particularly important if your country does not provide the relevant healthcare, especially for those with rare diseases. It was a great thing for EU citizens," said Dr O'Brien.

The UK won 17pc of the EU's health research budget between 2007 and 2013 through Horizon 2020 and it has been reported that the UK is currently involved in about 40pc of all adult rare diseases trials in the EU.

However, with Brexit, Ms Daly said this progress may be compromised.

"What we will say is nothing will change immediately. If people are receiving care in the UK, that is not going to change for the moment, but what happens after Brexit remains to be seen. We hope there will be a mechanism to enable the continuation."

In response to concerns raised over the future of UK care for Irish patients, a spokesperson for the Department of Health said: "The terms of a British exit from the EU are unknown at this stage. It is expected to take a minimum of two years of negotiations between all EU member states, including Ireland, to agree a new arrangement between the UK and the EU, and the Department of Health will be fully involved in these negotiations."

The department is undertaking "a full audit of the possible impacts, risks, opportunities and contingencies arising over the longer term, in the phases preceding and following the UK's withdrawal from the EU" in advance of the North-South Ministerial Council Health and Food Safety ministerial sectoral meeting scheduled for autumn 2016".

"Ensuring that there is minimum disruption in the area of health and that essential services are maintained will be our key priority," the spokesperson added.

Sunday Independent

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