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European Union Withdrawal Negotiations

Part of the debate – in the Scottish Parliament on 5th March 2019.

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Photo of Bob Doris Bob Doris Scottish National Party

I will raise a specific matter that is causing significant concern and alarm to clinicians, patients and families in Scotland and right across the UK in relation to Brexit: Scotland’s access to European reference networks—ERNs. However,

I assure members that this speech will not be a dry consideration of an abstract concept; rather, it is about a real, looming threat to some of the most unwell and vulnerable constituents we represent.

I am the convener of the cross-party group on rare, genetic and undiagnosed conditions. At our 5 February meeting, our members heard some stark warnings from clinicians Professor Peter Mossey and Professor Jonathan Berg about the threat of Brexit to ERNs. It is not an abstract threat; there are some real examples of how Brexit will impact on patients with rare, genetic and undiagnosed conditions.

ERNs connect patients, clinicians and researchers right across Europe. They allow knowledge and expertise about rare diseases to be shared across Europe, providing patients with access to diagnosis and transformative care without the burden of long-distance travel. ERNs enable researchers to engage with rare disease patients across Europe to support clinical trials, offering families hope that an effective treatment or even a cure will be developed for their rare conditions. However, at present, the UK Government and the EU have not agreed on a withdrawal procedure that would protect the UK’s ability to continue to be involved in ERNs, and that is a scandal.

Without the UK’s continued involvement, the capacity of the reference networks will be diminished and the networks risk falling short of their ambition to raise standards and ensure equity in rare disease care across the UK. Professor Mossey explained that clinicians in Scotland and the rest of the UK have already been informed that they will be prohibited from participating in and benefiting from data collection by ERNs from 29 March 2019—that is not just a threat; it is already happening. He explained that the potential implications of being removed from ERNs include reduced access to the best diagnostic and surgical expertise; the quality of patient care suffering, potentially resulting in patients dying; the introduction of inequalities; and the UK being unable to take advantage of research collaboration or to contribute to or benefit from innovation.

At the same meeting, Professor Berg echoed Professor Mossey’s comments and explained that a large axe had fallen, meaning that no patient data will be accepted by the EU after 29 March 2019. He said that he would no longer be able to seek diagnostic expertise for his patients—for our constituents—through European reference networks, which would be damaging for UK patients.

I thank the Genetic Alliance UK for its work in the area and for the information that it has given me in preparation for the debate. At present, there are 24 thematic ERNs involving about 20,000 healthcare professionals and 300 centres of excellence right across 26 European countries. In Scotland, there are seven centres of excellence in four of our national health service boards, including my board of NHS Greater Glasgow and Clyde. Those centres provide real support for patients and families with a wide range of conditions, including rare skin, lung and bone disorders.

The Specialised Healthcare Alliance, which has also been campaigning on the subject, estimates that 150,000 UK patients are cared for through European reference networks. That is not an abstract concept—it is 150,000 patients who are being put at risk by Brexit. The protect ERNs campaign is calling on the UK Government and the EU

“to secure the sustained involvement of the UK in ERNs.”

In December 2018, the UK Government stated that, in a no-deal scenario, UK clinicians would be required to leave ERNs on 29 March, and we know that that is already happening. The Genetic Alliance UK has said:

“For too long patients and families affected by rare conditions in Scotland and across the rest of Europe have had to struggle to access a correct diagnosis, specialist knowledge, and appropriate treatment. ERNs offer a unique opportunity to transform care and treatment for patients, but only if we can maintain momentum and ensure they can utilise all the specialist knowledge”.

That is all being put at threat.

Louise James is a parent representative with SWAN UK. Her son Scott has an undiagnosed condition and participates in the 100,000 genomes project, which is a really worthwhile pan-UK project. Louise has spoken about two other children, the first of whom is a little boy called Zach. She said:

“he is seven and currently in Bristol Children’s Hospital. His gastric issues are so rare here in the UK they are struggling to treat him and he is becoming seriously unwell. There is, however, a doctor in Italy that has researched and treated children just like little Zach, and shortly he will be travelling there for surgery. The follow up care will be done here in the UK, but using the expert knowledge from that doctor in Italy.”

Louise has also talked about a little boy called Sam. She said:

“He is three, blind and has seizures that so far medicine has failed to control. He is the only boy in the UK to be diagnosed with Grin1. However, there is a big study in Leipzig that is fast leading to potential treatments. Only by comparing that knowledge widely can we get a diagnosis and treatment for everyone. That means carrying on the good work across Europe, where these networks already in place are adding great value to the quality of life of children like my Scotty, just like Sam and little Zach, along with adults all across Europe.”

A no-deal Brexit must be taken off the table, not for the political classes but for our constituents and the patients I have talked about. Article 50 must be extended. My preference is that there is no Brexit. The only cast-iron guarantee that I can give my constituents and the families of those I have mentioned is that May’s Brexit is not fit for purpose and does not give the reassurances that we seek. 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. It is a matter of life and death. Let us bin Brexit or let us make sure that a no-deal Brexit is taken off the table, and let us serve our constituents.