MGA News Summer 2001

Neuroimmunology Group
Liverpool University Dept of Neurological Science

Our MG service is based at The Walton Centre for Neurology and Neurosurgery - the only dedicated NHS Trust for the clinical neurosciences in the UK. It is a collaboration between the NHS Departments of Neurology, Neuropathology and Neurophysiology and the University Department of Neurological Sciences’ Neuroimmunology Group. Together, we aim to provide a complete clinical and laboratory diagnostic and management service for patients and their referring physicians. We also cooperate with the MG Association in its mission to improve education and support services for all MG patients and their families.

Clinical service

We serve more than 300 patients with Myasthenia Gravis or related autoimmune disorders such as the Lambert-Eaton Myasthenic Syndrome (LEMS) and Neuromyotonia at the Walton Centre specialist MG/Neuroimmunology clinics. These are held monthly by Dr Bryan Lecky (Consultant Neurologist) and weekly by Dr Ian Hart (Senior Lecturer in Neurology). We work closely with Dr Andrew Bowden, a Neurology Consultant with a special interest in Neurophthalmology and the eye problems caused by MG, and with Mr Graham Kyle and Mr Ian Marsh - Consultant Ophthalmologists just over the road at University Hospital, Aintree. All the different aspects of the service are expertly coordinated by our medical secretaries, especially Ms Lorraine Roberts.

In addition, the fourteen Consultant Neurologists based at the Walton Centre provide Neurological Services for every major hospital in Merseyside, North Wales, much of Cheshire, The Isle of Man, and beyond. Throughout the region, from Bangor to Douglas, many other MG patients can choose to be managed by a visiting specialist at their local hospital neurology outpatient clinic.

Many of you will know that thymectomy is an important therapy for some types of MG. This operation is performed in Liverpool at the Regional Cardiothoracic Centre, Broadgreen Hospital, where we liaise closely with Mr Richard Page, Consultant Cardiothoracic Surgeon, and his colleagues

MG Link Nurse

Last year, we were delighted to welcome Sister Dawn Porter to our team. Drawing on her experience of caring for MG inpatients and their families, Sister Porter has quickly established herself as our MG Link Nurse - a role that complements her duties as a Senior Ward Sister. As well as counseling all MG inpatients during their stay, she helps educate Nurses and other staff on best practice in the care of MG patients. She is also able to devote one day a week to MG outpatients and their families. All our MG patients at Walton are encouraged to contact her. She usually consults with patients and relatives on the telephone but can, if preferred, see people at an outpatient clinic. She also runs a telephone advice and support line that has proved to be very popular with our patients and has attracted esquires from people all over the UK.

Sister Porter has had invaluable support from The MG Association, through both the local Merseyside branch and the National Office at Derby. We are proud to help the pioneering efforts of the hundreds of volunteers who provide the national support network for MG patients and their families.

Diagnostic laboratory services

While the Neurologists and Nurses at the outpatient clinics are the public face of the MG service, they could not operate without the expert help of many other staff at the Centre.

Our service has been enhanced by the creation of the Neuroimmunology Diagnostic Laboratory, driven by Mr Miguel Aguirreburualde, Laboratory Manager, and Dr John Broome and Dr Marco Rossi, Consultant Neuropathologists. Starting from scratch four years ago, we now perform assays for antibodies useful in the diagnosis of MG, LEMS and Neuromyotonia as well as other autoimmune neurological disorders. Last year, our laboratory staff guided by Mr Daniel O’Connell tested samples for MG antibodies from over 500 people from as far afield as Cyprus. The assays are usually done within a week and are all checked by a Neurologist with a special interest in MG. We aim to get the results back to the referring doctor with the minimum of delay. The reports are backed up by our telephone advice service where we offer guidance to Doctors on the implications of the results for their patients.

The MG service also relies on the expertise of the four Consultants at The Centre’s Department of Neurophysiology, headed by Dr Brian Tedman. They carry out the essential electromyographic (EMG) tests that tell the clinician whether MG is interfering with the transmission of nerve impulses to the muscles.

Research

We share the MG Association’s view that research is crucial if the management of MG patients is to move forward. The MG service continues with its long established commitment to clinical research.

We want to widen this commitment to include laboratory research. The Neuroimmunology Research Group started work last May, when we moved into newly refurbished laboratories at the University Department of Human Anatomy and Cell Biology. The core scientists are Dr Alison Scott (Postdoctoral Research Associate) and Dr Lorenzo Lorusso (Research Assistant). We aim to exploit advances in basic science methods to study autoimmunity in nerve and muscle diseases. Our current interests include the peripheral nerve hyperexcitability syndromes, such as Neuromyotonia, which are closely associated with MG and thymoma. We are a fledgling group, but we have firm plans to pursue our MG research on the effects of MG antibodies on muscle cell function and to study ways to improve diagnosis of thymoma.

This all sounds fine, but do we deliver what we promise? We certainly strive to fulfil our aims and we have been heartened by the positive comments from our patients. It can be difficult to attract scarce research funding and NHS resources for a relatively rare condition such as MG. However, with the goodwill of all the staff at The Walton Centre and the advice and moral support of our patients and the MGA, we hope to continue to improve the quality and widen the scope of the service.

If you want to find out more about the Walton Centre MG service, you can visit The Walton Centre and University Department websites.

MGA NEWS Summer 2001

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