I have previously espoused this view, but it seems to your editor that medical specialties can be viewed using the lexicon of Physics. At one end of the spectrum we find Relativity (The world of the very large - like my own specialty, Radiology) and at the other end, the world of the very small: Quantum Mechanics. In this edition, we consider as our review article, another of the ‘quantum’ subjects: Immunology. David Edgar is to be congratulated on producing such a well-written and lucid article, on what can be a vastly complicated and perplexing subject. His review on immunology gives the reader a synopsis of current thinking on this central subject.
Principal aspirations of a general journal, like ours, should be education and diversity. In this edition we consider subjects as varied as Sclerosing Cholangitis Overlap Syndrome; visual assessment in children with neurological disorders; the impact of the Emergency Nurse Practitioner; the history of Tuberculosis and it's tangential orbit with one of Ireland's greatest literary dynasties. Also, editor emeritus, Patrick Morrison, works the neat trick of seamlessly melding ancient and modern mythology with the unveiling of genetics' latest contribution to our increased understanding of gigantism.
Another innovation within this edition is ‘Grand Rounds’. The concept of Grand Rounds is anything but new, of course. What I envisage for it is a portal or forum aimed directly at non-specialists, doctors in training, and medical students. This edition's inaugural paper is, ‘The optimal management of Peripheral Vascular Disease for the non-specialist’ by Mark O'Donnell et al. I would hope that this feature speaks directly and cogently both to those approaching examinations, as well as those in established clinical practice.
I am pleased to say that, thanks to the hard work of our tireless sub-editor, Mary Crickard, the experiment with social networking continues and I hope you will follow us on Facebook and Twitter (UMJ_Belfast). It is perhaps worth restating that all of our previous editions are available, free, on line via the Ulster Medical Society, (http://www.ums.ac.uk/journal). I would be delighted, as always, to receive your thoughts and ideas for these and future directions (editor@umj.ac.uk).
It gives one perspective and is a somewhat sobering thought to appreciate that it is the privilege of the Journal editors to have an obituary within these pages. I knew him as Dr Gibson for many years, and as Mark, latterly. One day, we were having a conversation about albatrosses, as one did with Mark, and I was blathering on about the Rime of the Ancient Mariner. I had, and loved, an audio version from the Nation's Favourite Poems, read by John Nettles. Lovely, murmured Mark. By any chance, had I heard the Richard Burton version? I hadn't? Ah. The following day, there it was, sitting unobtrusively on my desk. The Welsh wizard was as magnificent as had been advertised. Mark was a very courageous man who bore his illness and met his fate with grace and courage. Among his many attributes, he had a profound but quietly-kept faith. Hiding, as it were, his light under many bushels. I hope, in repose, that he might approve of this slice of Coleridge1:
Oh sleep it is a gentle thing
Beloved from pole to pole
To Mary Queen the praise be given
She sent the gentle sleep from Heaven
That slid into my soul.
It is an extraordinary coincidence that I would eventually like Mark, become editor of the Ulster Medical Journal. The link editorially, between us, is Patrick Morrison. I owe a great debt of thanks to Patrick and also to his co-author, Stanley Hawkins, for rising manfully to the task of preparing Mark's obituary. In doing so, with determination and great discipline, they have distilled a life into one short page. To sum up a life's aggregate with its achievements, disappointments, aspirations, joys and heartaches is no easy business. However, not your obituary this, Mark: my words.
As the new decade begins, it's not unusual to evaluate, assess and take stock. Searching for perspective can be challenging, living, as we do, on what Douglas Adams described as the unfashionable western spiral arm of the galaxy2. Almost twenty years ago (February 14th, 1990) the astrophysicist and cosmologist Carl Sagan persuaded NASA engineers to turn Voyager 1 around, some four billion miles from earth, for, as it were, a last peek over its shoulder, as it exited our planetary solar system3. His purpose was to give us a unique perspective of our place in space. As he wrote himself, the earth appeared merely as “a mote of dust, suspended in a sunbeam.” I would urge you to make the time, to take the time, to enjoy Sagan's audiovisual masterpiece, ‘Pale Blue Dot’. It's four minutes long.
(http://www.youtube.com/watch?v=jhGKwo6-Lce).
That accomplished, and feeling cosmologically small enough, we can return to work. On behalf of the editorial team, in our mote of the unfashionable western spiral arm, may I wish you and yours a blameless 2011.
Live long and prosper, and don't panic2.
LIST OF REFEREES FOR 2010
We pass on our sincere thanks to all of our referees for 2010.
Dr Keith Armstrong
Professor Patrick Bell
Dr Timothy Beringer
Professor Eric Bolton
Mr Victor Boston
Mr Ross Carter
Dr James Clarke
Dr Anton Collins
Dr Rory Corbett
Dr John Craig
Dr Cathy Cullen
Dr Gavin Dalzell
Dr William Dickey
Wallace Dinsmore
Dr Andrew Dobbin
Dr Jonathan Dodd
Dr Seamus Dolan
Professor Stuart Elborn
Dr Peter Ellis
Dr Peter Flynn
Mr Keith Gardiner
Dr David Glenn
Dr Donncha Hanrahan
Mr Denis Harkin
Dr Nigel Hart
Dr Simon Hughes
Professor Lady Greta Jones
Dr Barry Kelly
Dr Michael Kelly
Mr Robert Kennedy
Mr Stephen Kirk
Dr Leo Lawler
Dr Tom Lynch
Dr Tony O'Neill
Dr Robert Madden
Professor Peter Maxwell
Professor John E Moore
Professor Patrick J Morrison
Dr James Murray
Dr Seamus McAleer
Dr Conall McCaughey
Professor Neil McClure
Dr Paul McCoubrie
Dr Neil McDougal
Dr Martin McGovern
Mr Lloyd McKie
Dr Steven McKinstry
Dr Kieran McManus
Dr Albert McNeill
Dr Tony O'Neill
Dr Stephanie Ryan
Dr Ashley Roberts
Dr Brendan Sinnott
Ms Samantha Sloan
Professor Roy Spence
Dr Colin Stewart
Dr Fiona Stewart
Dr Tony Tham
Dr Michael Watt
Mr Michael Whiteside
Dr John Winder
Dr Julie Yarr
Improvement in services for patients with rare diseases
Dr Fiona Stewart, Consultant in Medical Genetics, Belfast City Hospital
The Society for Mucopolysaccharide Diseases and the Primary Immunodeficiency Association in partnership with the Belfast Trust have undertaken an exciting new venture in Northern Ireland to improve services for families with these rare groups of diseases. They have appointed an all-Ireland advocacy support worker who will provide support for families both North and South of the border.
Mrs Alison Wilson has been appointed to the post. She has spent the last two years studying for an MSc in Genetic Counselling at Cardiff University. She will spend four days a week undertaking her advocacy/support role and one day a week working for the Northern Ireland Regional Genetics Service as a genetic counsellor. The MPS Society provides support for families with diseases including Hurler, Hunter Sanfilippo, Morquio, I–cell, fucosidosis and Fabry disease. The PIA covers diseases such as hereditary angioedema, hypogammaglobulinaemia, Wiskott Aldrich and many more.
Expert medical care is provided for these disorders in the regional centres. However, families affected with these disorders face many problems. These include accessing appropriate care packages and equipment, dealing with the benefit system and the education system and making the complexities of their conditions known to the health and social care professionals with whom they have contact.
The role of the advocacy support worker is to provide expert information and advice to MPS/PIA sufferers, their families and carers on issues relating to the non-clinical management of individuals affected by primary immunodeficiencies or MPS and related diseases. They also provide an active listening service to enable individual sufferers, their families and carers to speak about, reflect on and make fully informed decisions in respect of the meeting of their needs. This service includes an out of hours service, which operates every day of the year. Finally, they work in partnership with individuals and families and impart skills and knowledge to promote self advocacy.
If you have patients or families with these disorders and feel that they may benefit from the help of the advocacy support service, Alison may be contacted via the MPS Society at 0845 3899901 or via the Regional Genetics Service, based at Belfast City Hospital.
REFERENCES
- 1.Coleridge S. The Best Poems of the English Language. New York: Harper Collins; 2004. The Rime of the Ancient Mariner; pp. 358–376. [Google Scholar]
- 2.Adams D. Oxford: Pan Books; 1992. The Hitchhiker's Guide to the Galaxy. [Google Scholar]
- 3.Davidson K. New York: John Wiley & Sons; 1999. Carl Sagan: A Life; p. 398. [Google Scholar]