While Cesc Fabrigas was preparing psychologically for Arsenal’s historical encounter with AC Milan at the San Siro stadium on Tuesday 4 March, MEPs and policy makers were attending a European Kidney Health Alliance (EKHA) Seminar at the Parliament in Brussels. The EKHA is an alliance of not-for- profit organisations who represent the key stakeholders in kidney health issues in Europe. The member organisations are CEAPIR (European Kidney Patients Federation), EDTNA/ERCA (European Dialysis and Transplant Nurses Association/European Renal Care Association) ERA/EDTA (European Renal Association/European Dialysis and Transplant Association) and the ISN (International Society of Nephrology). Andy Rees (recently a Professor of Medicine in Aberdeen and a past President of the Renal Association who is now working full time in research in Vienna) chairs the Alliance. EKHA takes a multi-disciplinary approach involving patients and their families, doctors and nurses, researchers and other healthcare professionals who work co-operatively for a European health environment in which there is a sustained decrease in kidney disease and its consequences.
Mrs Freda Brepoels, (MEP, EPP-Ed Shadow Rapporteur ‘Organ Donation and Transplantation: Policy Actions at EU-Level’) hosted the event. Valerie Twomey (Patient) set the scene with a beautifully measured talk about what CKD, various forms of dialysis and transplantation had meant for her. Valerie worked the MEPs and others like a true master – plenty of body language, questions to the crowd and pauses as well as animation and cool graphics in the talk. One of the slides showed a poem a friend had written about donation. The deadpan voice-over in the manner of a railway station announcement rang out “organs not required at your onward destination” that’s to give you a flavour at what the kidney care professionals were up against!
Karen Jenkins (Renal Clinical Nurse Consultant in Kent and Chair of European Dialysis & Transplantation Nurses Association/European Renal Care Association CKD Group Chair), brought care planning to life by weaving a picture of the added value that each member of the multi-professional team contribute across the whole spectrum of kidney care. Paul de Jong (Professor in Nephrology from Groningen, Netherlands) presented the compelling data from the Prevend and other studies implicating proteinuria as one of the main therapeutic targets that must be controlled to achieve the “preventative dividend” of early detection. I spoke about our UK policy initiatives and our early experience with a structured managed care approach to CKD. Andy Rees summed up proceedings and the audience probed the panel on the health economics, linkage between CVD, diabetes and CKD and strategies to improve outcomes for people with kidney disease. Mrs Brepoels had listened carefully and contemplatively throughout. I think she will be a good ally in raising awareness in policy makers. From conversations afterwards, Frieda clearly had a good grasp of the issues.
At the reception we were treated to a medley of dialysis songs from the Brussels kidney community. Lyrics had been written by people on dialysis and the performance, sound engineering and CD production was co-ordinated by Vera Vertessen (Transplant co-ordinator at the University Hospital of Brussels). It gave an insight into the life and emotional relationship people on haemodialysis have with the machine. Everyone involved in that project is a member of the Brussels multi-professional kidney care team.
Oh, and by the way, I did get to see Ronaldo score his 30th goal this season, not from my seat at Old Trafford but from a sports bar in Brussels – through to the next round!
listen - "close to you" is about the relationship between dialysis patient and haemodialysis machine
watch & listen - video clip of the dialysis song "close to you" (You Tube)