SNP MEP Alan Smyth and party MSP Bob Doris have urged the EU to allow Scotland to remain within a Europe-wide network of medical expertise on rare diseases after being told it will be expelled.
Britain is due to be excluded from the European Reference Networks (ERNs) later this month, losing access to vital medical information.
Professor Peter Mossey, one of Scotland’s leading dental experts and cleft-lip specialists, last week told the Scottish Parliament cross-party group on rare, genetic and undiagnosed conditions that the exclusion could potentially result in patient deaths.
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ERNs operate across 26 EU countries, with 20,000 professionals from 300 centres of excellence contributing to their networks.
There are seven such centres in Scotland across NHS Greater Glasgow and Clyde, NHS Tayside, Ninewells Hospital and Medical School in Dundee and the Royal Infirmary of Edinburgh.
Some 300,000 Scots will be affected by a rare disease such rare lung, skin or bone disorders.
First approved by the EU Commission in early 2017, ERNs provide a virtual platform where rare disease experts support patients with diagnoses, removing the need for long-distance travel for treatment.
Smith and Doris have written an urgent letter to EU Commissioner Vytenis Andriukaitis, urging the EU to “do all that you can” to see the relationship continue.
Smith told the Sunday National: “This needs to be fixed. What Bob and I are looking for is a guarantee that we can stay, while we fix it.
"This could be three months, six months, nine months – during this time there will be gaps in this important information.
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‘‘It is a concrete example of a network which we have been a part of for as long as they have existed. These must be continued by a conscious effort. Here is a real example of something we stand to lose.
“I understand that there is every willingness on the part of the commission to keep these things going, but it is precisely in doubt because of a UK Government that is disastrous. Brexit isn’t all about high politics, it is about real people in the real world,” he added.
Bob Doris, MSP for Glasgow Maryhill and Springburn, last week raised the issue in Parliament.
DORIS went on to warn of the “real, looming threat” to Scotland’s most vulnerable people.
In his speech, the MSP said: “I do not give a monkey’s whether it is May’s Brexit or Corbyn’s Brexit; I just want to make sure that, whether it is in Maryhill as in Madrid or in Springburn as in Stockholm, the people and families I represent get the best-quality healthcare for the treatment of their conditions.”
He told the Sunday National: “ERNs can be a difference between life and death for some patients.”
“Everyone speaks in hyperbole about Brexit, but this is a brass-tacks issue about quality of life. It is not in Theresa May’s agreement and these networks will be shut off to clinicians. We need assurances now and there is nothing to stop Theresa May from acting now.”
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Practitioners across the UK have already been informed that they will be prohibited from accessing ERNs data from March 29 onwards.
This revelation comes after the UK Government previously recognised the importance of ERNs in their own 2018 Brexit white paper. However, in preparation for Brexit, the European Commission were quick to ask UK hospitals involved in ERNs to step down in November that year.
Professor Mossey warned MSPs that the implications would certainly mean losing access to top diagnoses and surgical expertise.
Expulsion from ERNs could also see the UK miss out on opportunities to take part in collaborative research, as well as incurring significant costs via attempts to ensure the UK stayed at the forefront of medical science.
The Scottish Government has already written to the Prime Minister on the issue. Health Secretary Jeane Freeman said: “The exchange of knowledge and expertise is one of the most valuable aspects of EU membership, and the European Reference Network is just one example of the many benefits we could lose out on after Brexit.
“The Scottish Government believes that Scotland’s future is best served by remaining inside the EU... The UK Government must – at the very least – immediately rule out a no-deal Brexit, and all of the damaging consequences that would bring for Scotland’s health and social care system.
Genetic Alliance UK are leading the campaign to protect ERNs membership. Chief executive, Dr Jayne Spink said retaining ERNs access was crucial. “Protecting the ability of UK specialist centres to play their roles within the ERNs is massively important,” she said.
“There are no guarantees at present; deal or no deal and we stand on the brink of losing access to diagnostic and clinical expertise and to collaborative partnerships that drive forward innovation.
“Further diminishing or damaging involvement for Scotland and the UK in the work of the ERNs will disadvantage patients. We need as many individuals as possible to show their support by signing up to our Protect ERNs campaign.”
The UK will also be excluded from the European Medicines Agency, set up in 1995 to improve regulation of medicines across Europe.
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