Pan-European centres of excellence are changing the lives of patients with rare and complex diseases across the continent. They provide a vital lifeline, enabling specialists to collaborate more closely than ever before. The UK’s political decision to leave the EU must not jeopardise this opportunity, writes Professor Chris Chapple.
In my professional career as a consultant urological surgeon at Sheffield Teaching Hospitals NHS Foundation Trust for over 20 years, I have on several occasions been contacted by fellow consultant colleagues from across Europe for clinical advice and second opinions on patients with complex cases.
As a subspecialist centre for urology, patients are often referred to me from other areas of the UK but also from hospitals in the EU, especially those with smaller populations, for highly specialised surgical procedures.
In Europe, particularly in smaller countries, there are a number of conditions which will have a limited incidence due to the small size of the population. For instance, in developed countries, a fistula in the urinary tract following surgery is an extremely uncommon incident, occurring approximately once per 750,000-1,000,000 population per year.
In a country with, say, a population of 8 million, there will be eight to ten of these cases a year. As this is distributed across the country and not localised to one centre, it is logical that it is difficult for any individual surgeon to have particular expertise with this problem.
In this context, I recently had a case referred to me where there had been three previous attempted repairs of a vesico-vaginal fistula from a major teaching centre in another member state. This has been possible thanks to EU reciprocal healthcare arrangements, which allow patients to receive healthcare in another member state.
I successfully carried out the repair without any difficulty, as we are a subspecialist unit in Sheffield Teaching Hospitals NHS Foundation Trust, which carries out approximately 20 of these procedures per year. In the case of the referring department, which I subsequently visited, they saw one such procedure every 18 months.
Prior to this surgery, the patient had been unable to work for 18 months and had suffered with incontinence and other functional problems that severely affected her quality of life. She is now fully recovered and back at work and I received a Christmas card from her last year to thank me and tell me how well she was doing.
I believe this example perfectly illustrates the rationale for giving patients the possibility to access the best possible care, regardless of where they happen to live. This is even more important when they suffer from a rare or very complex condition, where having access to experience and high levels of expertise is crucial.
This is why I am proud to be leading a newly established European Reference Network for rare urogenital diseases and complex conditions, which is made up of 29 specialist healthcare providers in 11 member states.
Our network will offer virtual review of rare and very complex cases, including the diagnosis and treatment of people with highly complex urogenital disorders, those who have rare urogenital cancers and children who have suffered with urogenital disorders from birth.
We have listened to the views of patients who prefer highly specialised urogenital surgery and treatment to take place in a few centres of excellence by highly trained and experienced surgeons. This centralised approach is cost effective and provides the best possible outcomes.
Promoting the care of rare and complex conditions in centres of excellence and using multidisciplinary teams improves survival and quality of life, and this is particularly pertinent for penile and testis cancer and urethral stricture disease.
Knowledge sharing across our European Reference Network will foster innovation and allow better diagnosis and new treatments and surgical techniques to be tested and made available to patients more quickly where there are gaps in current effective treatments.
It is imperative that this incredibly exciting opportunity for greater collaboration through European Reference Networks is not jeopardised by the UK’s politicial decision to leave the EU.
As the number of patients we are dealing with in the network is by definition small, due to them being rare or very complex, we can only make progress through cooperation at EU level. When the UK leaves the EU, it will be crucial that we can continue to be involved for the benefit of both patients in Europe and in the UK.
Patients should always come first, whatever the outcome of Brexit negotiations and as medical professionals, my colleagues and I are committed to offering them the best possible treatment.
Professor Chris Chapple is consultant Uurological surgeon at Royal Hallamshire Hospital, honorary professor at University of Sheffield, visiting professor at Sheffield Hallam University, secretary general at European Association of Urology and coordinator of the eUROGEN European Reference Network. Follow him on Twitter @ProfCRChapple
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The Brexit Health Alliance has warned that patients could suffer if a 'worst case scenario' Brexit ended healthcare arrangements between the UK and EU. The alliance is calling on Brexit negotiators on both sides to take steps to ensure this does not happen.
Discover more in the Brexit Health Alliance's new briefing Maintaining reciprocal healthcare for patients after Brexit.
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