28.02.17
Brexit could see rare disease patients pushed ‘to the back of the queue’ for care
Patients suffering from rare diseases could find themselves pushed to the “back of the queue” for treatment if the UK is removed from important European medical networks that combat these illnesses because of Brexit, the NHS European Office, a wing of NHS Confederation, has warned.
The message, which comes on the same day as Rare Diseases Day, warned the government to defend the UK’s position in the 24 European Reference Networks (ERNs), authorities that create cross-border healthcare across Europe, with six of them being led by the UK from within 40 hospitals involved with the networks.
The networks allow leading specialists across Europe to work together to combat rare diseases, and to collaborate and share knowledge and research on rare conditions such as neuromuscular and auto-immune conditions.
However the UK withdrawing from the EU could put Britain’s membership in these networks at risk, and could mean that patients suffering from these conditions will not receive the best care.
As well as this, flagship initiatives such as the 100,000 Genomes Project, which aims to better understand DNA, could also suffer from the UK not being involved in the ERNs.
Niall Dickson, chief executive of NHS Confederation, which runs the NHS European Office, said: “While millions of people suffer from a rare disease, the number of patients with a particular disease in each country is so small that expertise and treatments are not always available. That is why international cooperation is so important.
“Working together we can use scarce resources to be pooled and patients, clinicians and researchers to link up. ERNs have taken this joined-up approach a step further, allowing more formal and organised cooperation for the diagnosis and treatment of rare disease patients.”
Dickson added that NHS Confed was concerned that the UK’s future involvement in these networks may be at risk, given that membership is currently restricted to EU and EEA member states.
“From our perspective it is crucial that UK institutions can continue to work closely with their European counterparts so that UK and other European patients will not lose out,” he argued.
“In view of the forthcoming Brexit negotiations, it is vital that our negotiators push this issue further up the agenda so that the NHS’s important role in these Networks can be preserved for the benefit of patients.”
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