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Neurology Information Meeting, Waterford
Representatives of the NAI attended a Politicians Awareness Morning in the Woodlands Hotel, Waterford on 19th April 2004. The meeting was organised by the steering group for the South East. The aim of the meeting was to raise awareness of the lack of an adequate Neurology service in the South East and the gaps in existing services. The NAI was represented by Audrey Craven (Chairperson), Dr Orla Hardiman, Consultant Neurologist, Eithne Frost, Irish Motor Neurone Disease Association and Aileen Barrett (Secretary).

Dr Hardiman was invited to join the panel, which included two elected representatives Gus Byrne and Cora Long, Dr Rena Mulcahy, a geriatrician from the South East and key-note speaker Dr Brian Sweeney, Consultant Neurologist from Cork University Hospital. Dr Sweeney delivered a most informative paper on the current state of Neurology in the South and South East. The meeting was chaired by Ms Mary Van Lieshout from the National Disability Authority.

Apart from the elected representatives on the panel, there were other politicians present. The presentations from patients and patient?s families provided a revealing and moving account of the difficulties encountered by users of services. One such account was from Anna Fenlon, an elected representative of the MS Society, who recounted her difficulties travelling to Dublin to see a consultant. Eventually she decided to discontinue these arduous trips because of the hardship caused to her family and now she wondered if she had missed out on medical advances as a result.

The steering group is to be congratulated on the success of the meeting. It was a very worthwhile trip for the NAI and served to emphasise the need for all of us to work more closely as we strive to develop better Neurology services throughout Ireland.

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Keeping up with the Times
Audrey and Aileen travelled to Limerick on the 20th May to attend the above Seminar run by: Parkinson's Association, MS Ireland and Brainwave, The Irish Epilepsy Association. The seminar was held in the South Court Hotel Limerick and was aimed primarily at general practitioners and specialist nurses. The list of speakers was very impressive and included:
Jim Crotty, Radiologist, who spoke on Imaging of Neurological Disease,
Brian Sweeney, Consultant Neurologist, who spoke on MS: The scale of the problem,
Peter Kirwan, Consultant Psychiatrist who spoke on Parkinson's :Psychological Sequelle, Dr. Helena Moore, Consultant Neurologist, on Epilepsy and Women's Issues
Dr. David Gosal, Parkinson's Disease Research Registrar who spoke on Differential Diagnoses in Parkinson's Disease and Margaret Richardson, Parkinson's Nurse Specialist, on the role of the nurse specialist

It was a very interesting day where they learned much about new approaches and new attitudes to treatment for some chronic Neurological conditions. Each of the speakers was an expert in his or her particular field and it was a great privilege to have had the opportunity to hear their combined wisdom.

Audrey and Aileen were made to feel very welcome by everybody and in particular by the organising committee. They broached the feasibility of a joint meeting with them and intimated that the NAI might have funding available specifically for regional development. We look forward to this collaborative venture in the future.


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NAI participate in North West Regional Meeting
The Leitrim Area's MS organisation held an excellent Information Evening in Carrick-on-Shannon at the Landmark Hotel on Wed. 25th August. More than 50 people turned out to listen to three invited speakers and watch a superb drama presentation.

The event was introduced by Carol Moore and Marcia O'Brien, the two Leitrim committee members who did such tremendous work in organising the event. Unfortunately, Josephine Tinneny could not be present but John Macintyre from the North West office in Letterkenny very ably deputised and gave an update on all the activities that the branch is currently involved with. Mike Glynn, Treasurer of the Neurological Alliance of Ireland (NAI) then gave a presentation on the work of the NAI. He explained how the Alliance had come into being in 1998 and gave an overview of NAI's activities to date especially in relation to the three Standards of Care (SOCs) that the NAI has produced. Mike went to explain how the SOCs had been crucial in having the committee to review Neurology and Neurophysiologyservices set up and the subsequent Compare an n'Ospidéal report produced. His slides illustrated what the current provision of Neurology services is and what it would look like if Comhairle's recommendations were implemented. Separately, Mike showed what the picture for the North West would look like. He went on to explain how NAI had been very short of cash up until recently and that this had restricted the Alliance in developing outside Dublin but he was very grateful for the opportunity of taking part in tonight's meeting because the NAI was now taking every opportunity to get out to the regions and meet with all the key people around the country. This would inform the way that the NAI would develop its activities to ensure that everybody everywhere in Ireland living with Neurological/Brain conditions could be part of its work. A very lively question and answer session then took place.
The next speaker was Ms. Ethel Patterson, Head of Physiotherapy at St.Patrick's Hospital in Carrick-on-Shannon who outlined the benefits of daily exercises for people with MS in order to keep muscles from atrophying. Thelma put huge importance on the benefits to be derived from breathing exercises and told everyone about the importance of smiling which produces Serotonin through chemical reactions and which is hugely beneficial to everyone's health.
A brilliant drama production then followed from John MacGinty and Ciaran
Carolan from MS Ireland's Letterkenny office together with James King, an actor and lecturer in drama at the University of Ulster. The three performers very gently sent up what had happened already on the night and then gave a very funny but thought provoking drama about disability issues based on real events which had happened in the North West.

The key speaker of the evening was Mr. Syed Jaffery a Consultant Urologist from University Hospital Galway. Mr. Jaffery gave a wide ranging presentation on the subject of Bladder Management for people with MS. This is a major issue for all people living with MS and Mr. Jaffrey covered all the different types of problems that present and gave excellent tips on the best ways that people could devise strategies around the problems. There were many questions from the audience afterwards and Syed Jaffrey provided excellent responses to all the queries.

The formal activities of the evening were then wrapped up by Mr, Ronnie Dorran the man responsible for founding Leitrim MS Branch many years ago. However, food and music was then laid on to provide a fitting end to a tremendous evening.

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The Publication of the Disability Bill September 2004
The long-time promised Disability Bill was published on the 22nd September 2004 and received a guarded welcome from groups representing people with disability. The Disability Bill 2004 must be seen in the context of the National Disability Strategy, it cannot be viewed in isolation and must be considered in relation to the multi-annual financial package, sectoral plans of the Government Departments and the provision of independent advocacy services.

As part of the overall National Disability Strategy six government departments have also published their outline sectoral plans, which set out programmes for future development in the area of the disability and are due to be finalised next year. Ministers in the six departments: Health, Social Welfare, Environment, Transport, education and Enterprise and Trade- must budget for the provisions of the Bill.

Some provisions in the Bill
People with disabilities will have a right to have an individual service plan drawn up. The Bill also provides for access to public buildings, services and information and an obligation on public bodies to employ people with disabilities.It also provides for restricting the use of information from genetic testing for insurance and employment purposes.
The Bill sets out a system for the assessment of such a person's (i.e. a person with a disability) educational and health needs. This will be carried out by an assessment officer working for a health Board, who will have an independent statutory function. It will be carried out without regard to the cost or capacity to provide any service identified in the assessment. It will detail whether the person has a disability, its nature and extent, the persons educational and health needs and a statement of the services considered appropriate along with the time scale for their delivery. A separate service statement will also be drawn up, based on the statement of needs. This will take into account the practicability of providing the service and the financial resources available.


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Breaking the Taboo, Public Lecture on MS

A highly successful public information lecture entitled "Breaking the Taboo; Managing the Hidden Effects of MS",was organized by the Neurological Alliance of Ireland and the Irish Institute of Clinical Neuroscience at the O'Reilly Hall UCD on the 16th September 2004. The lecture was sponsored by an educational grant from Schering AG. More than 350 people attended to hear about cognitive impairment in MS, a subject often regarded as taboo. There were three excellent speakers: Dr. Niall Tubridy Consultant Neurologist, St Vincent's Hospital; Dr. Teresa Burke Senior Lecturer in Neuropsychology, UCD and Mr. Austin Claffey Senior Occupational Therapist, St Mary's NHS Trust London. The lecture was chaired by Aine Lawlor and the Guest of Honour was Liz McManus TD.

Dr. Niall Tubridy, recently appointed Neurology Consultant in St. Vincent's University Hospital and an acknowledged specialist on the subject of MS presented a clear picture of the diagnostic process in MS, the currently available treatments, and of the under-recognition of cognitive impairment. Dr. Burke described the different types of cognitive impairment such as poor memory, poor concentration and inappropriate behaviour and the techniques used for differential diagnosis. Dr T. Burke, who has a world reputation in the neuropsychology of multiple sclerosis, spoke on the different types of cognitive impairment and the effects on the already compromised patient. She differentiated between cognitive impairment and the resultant psychological problems, such as depression lack of self esteem and frustration. She spoke on the effects of fatigue- a common problem for those with MS and the lack of information for families and carers.

Austin Claffey, an occupational therapist by training, and with further qualifications in psychotherapy, was the final speaker. His approach was replete with positive plans and stratagems for coping. He spoke of energy conservation and daily planning. His extensive experience as a clinician was reflected in the creative and innovative ways he outlined to deal with the challenge that MS presents to patients and carers. Austin Claffey showed how these symptoms can be managed in the context of our daily lives and described stratagems to ensure that any disruption is minimised.

Further information meetings hosted by the NAI are planned, at which under recognised and under-resourced aspect of neurological disability will be highlighted.

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Nationwide regional meeting of the NAI
On 11th November 2004, the NAI held a nationwide regional meeting, in association with the Irish Institute for Clinical Neurosciences, at the Conrad hotel, Dublin. The aim of this meeting was to bring together representatives from each of the Alliance member organisations around the country as well as Neurologists and representatives from each of the Health Boards. Participants from each regional group were divided into groups, each led by a facilitator and asked to identify problems in Neurology in their area and proposed solutions to these problems. They were also questioned in relation to influencing the national agenda in terms of the development of Neurology services. Feedback was obtained and collated from each of these groups and the information later circulated to our members. This meeting was extremely valuable in terms of the ideas generated. The presence of Mr Eric Hauth, senior manager, State Affairs Committee, American Academy of Neurology, attended as guest speaker and facilitator. His input was particularly valuable in relation to advocacy and promoting the message of the organisation.

The meeting in the Conrad Hotel on the 11th November 2004 was a joint meeting hosted by the NAI and the IICN to explore the difficulties encountered in all of the regions with the provision and delivery of services for people with Neurological conditions. Representatives from the Voluntary Groups, Health Boards, Neurology Specialists and other health professionals were invited were invited to attend. The idea was to provide a forum for the voluntary groups to discuss their concerns, their difficulties and their perception of obstacles and solutions to the provision of services,

Dr. Orla Hardiman, who had the vision to offer this opportunity to the NAI as part of the Biennial Diaspora Meeting, initiated and directed the proceedings for the day.
Helen Shortt, Senior Manager St. Josephs Hospital, Raheny Dublin Chaired for the proceedings for the day;
Mr. Eric Hauth, Senior Manager, State Affairs Committee American Academy of Neurology USA who spoke the previous evening in the Mansion House on the 3 P?s, Professionals, Patients and Politicians and their role in the advocacy process was the facilitator for the day.

The participants were divided into four main groups representing four main areas i.e. South/Southeast; Midwest/Midlands; West/Northwest; and East/Northeast and a rapporteur and facilitator appointed to each group. Members of the IICN, Dr. Tim Counihan, Dr. Colin Doherty, Dr. Aisling Ryan and Ms. Mary Fitzsimmons acted as facilitators for each of the groups.
The NAI provided rapportage for each of the groups.
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