Comment: Rare is common, but common is becoming rare
John Bradley
pp 3-3
29 February 2012 marked the fifth international Rare Disease Day. Co-ordinated by the European Organisation for Rare Diseases (EURODIS), an alliance of patient organisations and individuals who are active in the field of rare diseases, the day provided an opportunity to raise awareness of rare diseases in 63 countries around the world. EURODIS is one of a growing number of organisations dedicated to improving the quality of life of people living with rare diseases.
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Developing a home PD programme – the Hull experience
Helen Collinson, Caroline Pyrah and Phil Ward
pp 4-6
Home dialysis therapies have many advantages for patients. In particular, patients are recognised to have greater control over their medical treatment and an improved sense of well-being. There is more efficient use of resources in relation to nursing staff, transport and space. In the UK, around 40% of patients started dialysis treatment on peritoneal dialysis in 2000; however, since then, there has been a sustained decline in new starters.
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Rare kidney diseases in the UK: from strategy to practice
C Mark Taylor and Fiona E Karet Frankl
pp 7-9
Three million people in the UK have a rare disease. Within Europe and the USA, it is well recognised that patients with rare conditions face intrinsic inequalities in healthcare. In 2010, in response to a recommendation by the European Commission, the UK government agreed to produce a plan for rare diseases by 2013; the Chief Medical Officer, Liam Donaldson, devoted a whole chapter of his annual report to this issue in 2009. The chapter was called ‘Rare is common’, meaning that, when taken together, the patients suffering from the 6,000 or so recognised rare diseases make up a sizeable proportion of the NHS caseload.
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AKI as a first presentation of sarcoidosis
Barbara Heffernan, Chris Hill and John C Harty
pp 10-11
A 42-year-old African male who had been a resident in Northern Ireland for one year was referred by his GP to nephrology. Routine blood tests showed elevated serum creatinine levels (179 µmol/l). His only historical results were approximately one year old and, at that stage, his creatinine levels had been 148 µmol/l. At the time of presentation, he was clinically well. He described a mild, intermittent, non-productive cough and some recent sinusitis, for which he had used a combination of an oral antihistamine and nasal corticosteroid spray.
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Ethical challenges in transplantation
Keith Rigg
pp 12-14
Over the last 50 years, renal transplantation has moved from being an experimental procedure to a well-established treatment. So why is there still a plethora of related ethical challenges, and why have these not been resolved? Ongoing ethical challenges arise primarily because of the shortage of organs for transplantation, as this has become the treatment of choice for a wider range of patients. There is not scope within this article to cover all the ethical challenges facing organ donation and transplantation in depth, but an overview of the key issues is given, including deceased and living donation and newer technologies.
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What I tell my patients about conservative kidney management
Helen Alston and Ken Farrington
pp 15-17
Kidney disease is becoming more common in the western world, especially among older people. This has led to greatly increased numbers of older patients starting dialysis. Many of these patients have other medical problems, such as heart disease and diabetes; many are also quite frail, and need help and support. Dialysis in these circumstances can be burdensome, and survival may not be greatly prolonged.
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Evolving partnership working between primary and secondary care
Hugh Gallagher, Simon de Lusignan and James Marsh
pp 19-21
The landscape of renal disease in the UK has changed dramatically over the past ten years, and the relationship between primary and secondary care is evolving to meet the many challenges that have been set. Here, we reflect upon some successes of this new collaboration, and consider the barriers to better working that still remain.
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The travelling transplant surgeon
Andrew Ready
pp 22-24
If a nephrologist from another galaxy, with no knowledge of Earth, landed in the UK – and some transplant surgeons fear this may have already occurred – she would soon develop a clear view about end-stage renal disease and its management. The view would be that patients receive very comprehensive treatment, and this would hold true for the rest of the developed world. In these areas, virtually no patients die of the causative condition and everyone, from infants to the elderly, can benefit from renal replacement therapy in the form of dialysis.
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Patient carers as partners
Donal J O'Donoghue
pp 25-25
The better understanding individuals have of their body and of their condition, the better they can adjust – raising the potential for more involvement in their own care. In this regard, kidney disease patients are no different from those with diabetes or heart failure. Indeed, the same person may have all three conditions! A central theme of the National Service Framework for Renal Services is patient involvement in shaping strategy, supporting local implementation and making choices about the future.
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ERA-EDTA Congress 2012
Kirstin Knight
pp 26-27
It was during a few days of glorious May sunshine that the 49th European Renal Association–European Dialysis and Transplant Association (ERA-EDTA) Congress took place in Paris, France. Attended by more than 8,500 delegates, as well as 2,700 industry representatives, the conference showed that the ERA-EDTA is a steadily growing organisation. At the press conference, a number of key themes were discussed.
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Overcoming barriers to home haemodialysis
Martin Wilkie, Saghir Ahmed, Maggie Lean and Sarah Jenkins
pp 28-31
In the early days of renal replacement therapy, home haemodialysis (HD) was the most common dialysis modality. However, that situation has changed dramatically in recent decades, with home HD becoming the least popular modality in most countries – including the UK. In fact, several countries continue to have a higher percentage of dialysis patients on home HD than the UK: in 2008, the prevalence of home HD was 15.6% for New Zealand and 9.4% for Australia, with Denmark reporting 4.6%, Finland 4.0%, Sweden 2.8%, the Netherlands 2.4% and the UK 2.1%.
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