The Survivor Newsletter: Sligo Conference Edition April 2008

The Post Polio Support Group’s 2008 Conference and AGM has become one of the biggest events in its history. Seeing a whole weekend of events and activities that will be of interest, education and not the least entertainment for nearly 200 delegates and their families, based in & around the SAS Radisson Hotel, Rosses Point, Sligo.

The Conference & AGM on Saturday 19 April will be opened by the Minister for Disability and Mental Health, Dr. Jimmy Devins, TD (FF). First elected to Dáil Éireann in May 2002, he took up his current position as Minister of State at Department of Health and Children in July 2007.

Educated at Blackrock College, Dublin, University College Dublin & Trinity College, Dublin he is a registered General Practitioner.Minister Devins was formerly a member of Sligo County Council from 1991 – 2003, & member on the Border Regional Authority, the Border, Midlands & West; Western Assembly and former Chairman of the Institute of Technology, Sligo.

The first item on the Conference agenda sees the PPSG Chief Executive giving the Board’s assessment of the progress of Plan 2010 in its first 6 months. The Plan looks at the Group’s development over the next 3 years. Having sustained rapid expansion since 2004, the Board saw the need to plan decisively so that the ongoing needs of Polio Survivors could be met. Plan 2010 is a challenge that needs to be addressed, not just by the Board of Directors and Trustees, and staff members but also by all Polio Survivors in Ireland.

Ciarán Nicholson will chair a modular session dealing with “Quality of Life Issues for Polio Survivors” The first module will present the results of research by Deidre Murray, Senior Physiotherapist, Beaumont Hospital, Dublin into improving care for Polio Survivors. The research is the subject of ongoing grant funds from the Group.

The second module looks at a subject close the heart, if not limbs of many Polio Survivors – Orthotics. Dave Allen, Prosthesist / Orthotist, IDS, Cappagh Hospital will show how they can help support Polio Survivors and describe the latest developments in the field. Throughout these sessions, there will be time for questions and discussions.

The afternoon sees the Group’s Annual General Meeting where members will not only have the chance to quiz the Board of Trustees and Directors but also to review the Group’s activities over the past year as well as the prospects for the forthcoming twelve months. Members have often asked about the way some of the documentation is presented, the use of words such as profit and loss in the accounts. This may seem at odds with being a charity, but the Group is also a limited company by guarantee and must comply with all aspects of Company Law and Acts. This drives both the format and formalities of the proceedings and explains why only registered members of the Group may vote on changes to the legal instruments, accounts and elect the members of Board of Directors and Trustees.

"CREATIVITY & US"

Following on from the worldwide success and interest in the “Polio & Us” anthology published in 2007, this year sees a sister event “Creativity & Us” celebrating the artistic endeavours and achievements of Polio Survivors from both sides of the border. Sponsored and supported by local & national bodies, statutory and voluntary, the event is being opened by Pat Dolan, Local Health Manager for the Health Service Executive, North West at 6.30 p.m. on Friday 18 April in the hotel’s Benbulben Suite 2. The exhibits include paintings / photos, craftwork, creative writing and poetry; these will be on display in the hotel for the whole weekend and everyone is urged to admire the handiwork and talent of Group members. You never know it might even encourage others to “have a go”!

After the weekend, all the exhibits will be put on display in the Exhibition Space of the Primary Care Centre, Barrack Street, Sligo from 22nd April to 10th May 2008 and will be the Group’s contribution to the Bealtaine Festival of Creativity in Older Age. Funds and sponsorship permitting, it is hoped all the exhibits can be brought together in book and disc format to serve as a companion to “Polio and Us”. A Legacy Initiative of the Group it will act as a reminder to those that come after of the part that Polio played in the history of Ireland in the first part of the 20th century.

Lastly, but by no means least there will be many opportunities to socialise and be entertained. For those arriving on the Friday the Group has laid on a buffet, unfortunately the funds do not allow this to be free of charge! This will be followed by a table quiz – with prizes!

After the AGM there is “A very special performance”, in fact so special only the organisers know what it is! The evening sees a dinner hosted by the Group followed by music and entertainment. After breakfast on Sunday all may return home, tired, informed and hopefully well satisfied with a worthwhile weekend.

WELCOME TO OUR VISITORS FROM THE NORTH AND UK

This year the Conference & AGM has again taken on a truly international flavour as we welcome Polio Survivors from the Northern Ireland Polio Fellowship as well as Graham Ball, Chief Executive of the British Polio Fellowship.

Carmel Denny contracted polio in 1946 aged six in Moate, Co. Westmeath, spending the next 8 years in Cappagh and Baldoyle Hospitals, followed by National School for 2 years and a further 2 years in Technical School. Carmel went to Belfast to do hairdressing 40 years ago, and stayed. Not only a member of NI Polio Fellowship but also a member of PPSG!

Helen Chapman was fifth person to contract polio in Cork in 1956 at age 10 (her sister was sixth) and was treated at Cork Fever Hospital and Cork Orthopaedic Hospital. Helen went to Belfast to study at Queen's University and met her husband Wesley there. They have two daughters. She worked as a Librarian for many years but had to retire in 2002 due to the late effects of polio.

Photo of Helen Nelson Helen Nelson, Chairperson of NI Polio Fellowship, contracted polio in 1950. She lives in Bangor and works as a teacher and is married with two daughters. She has been a member of the Fellowship for many years and swam in competitions in Northern Ireland, England and the Republic of Ireland. She joined the NI Polio Fellowship Committee in October 2002 later becoming Chairperson.

Graham Ball has been the Chief Executive of the British Polio Fellowship for the last 4 years. He has been in the charity sector for the last 20 years following his retirement from the London

Metropolitan Police and has previously been the Chief Executive of a hospice, Chief Executive of the National Eczema Society and Deputy Chief Executive of the Merck Sharp & Dohme Foundation.

Since joining the Fellowship Graham has rejuvenated its service provision and extended it. He has doubled the staff to 20 and is proud of the professional team the Fellowship now has. He states there is lots more to do to enable people with Polio in the UK to get all the services and care they need as they become more disabled by age and Post Polio Syndrome.

Graham is married to Janet and lives in Rutland, the smallest County in England. He has two sons and four grandsons and in his spare time (not much of that) he plays squash, horse rides and enjoys woodwork and learning to get by in foreign languages (though sadly not Gaelic - yet).

Other News

A long time friend and champion of the Group and Polio Survivors, Senator Geraldine Feeney, Fianna Fail, Seanad Spokesperson on Health and Children was invited to attend. In reply, she wrote to the Chairman saying:

“Thank you for your letter and kind invitation to join you for dinner on 19 April as part of your Conference and AGM.

Unfortunately, I will not be in Sligo that weekend, but I take this opportunity to wish you, and the group well with your Conference. Rest assured I will continue to raise your concerns, whenever I get the chance to do so.

Best Wishes

Senator Feeney has taken up the cause for Polio Survivors on many occasions, the last being in November 2007 at a sitting of the Health Committee where she posed the following to Mary Harney, TD, Minster of Health:-

“When the Minister attended a meeting of the last committee in December 2005, I spoke to her about a particular delegation we had met. All of the groups that came before the committee during the last term were impressive, but I was particularly affected by the Post-Polio Support Group. This organisation has some 750 members and another 200 to 300 members outside the group. These are middle aged to elderly people who are suffering from post-polio syndrome. I asked the Minister to consider including such persons in the long-term illness scheme. The Minister told me this scheme had not been reviewed for 30 years and I understand that remains the case. Only 40% of the 750 members of this group have medical cards and the remainder find it difficult to make ends meet, given their age and the demands of coping with medical and living expenses. Will the Minister consider a special arrangement to accommodate their needs? The numbers involved will decline rather than increase in the future. There should be a special allowance for people suffering from polio from an early age and those diagnosed with post-polio syndrome.”

The Minister gave the following response:-

“I am familiar with the Post-Polio Support Group. There have been no additions to the illnesses covered under the long-term illness scheme since 1975. I was not even a Member of the Oireachtas then and I have been here for 30 years. The reason for this is cost. The Department is currently undertaking a review of eligibility for the various health benefits. This is a major legislative undertaking. As part of this process, I intend to discuss with the HSE how we can best support those in greatest need. The long-term illness card covers the cost of medication but no one, irrespective of circumstances, pays
more than €85 per month for medicine. There is a case to be made that this review of eligibility should incorporate a rebalancing between those who require medication only occasionally, perhaps once or twice a year, and those who need it every month. We are also reviewing the medical card scheme and trying to obtain data on who is currently in receipt of a medical card. Some 200,000 additional people in the last two years have secured access to their general practitioner free of charge. Of these, some 75,000 are in receipt of the doctor-only card, while the remaining 120,000 received full medical cards. This is not inconsiderable given our increased prosperity and the associated rise in incomes. All of this must be subject to the analysis we are conducting in conjunction with the HSE. I understand there are between 3,000 and 4,000 people with post-polio symptoms, which can be quite severe. I do not say this lightly, because I speak to so many groups and it is difficult to distinguish one from another, but this is a group that should receive particular consideration in the context of the eligibility review.”

Quotes from Senator Feeney and Deputy Harney reproduced from official Oireachtas records.

It is through the efforts of politicians of all parties, such as Senator Feeney and others, that the Group has been able to help so many over the years. Long may they continue to highlight the battle that Polio Survivors face every day, and force those in power to fund their needs adequately.

And Finally...

Photo of Paula Lahiff - Conference and AGM 2008 Organiser

The Conference and AGM – Sligo 2008, together with its companion event “Creativity & Us” do not just happen. They take months of planning, in this case over a year of detailed work, worry, and frustration. The driving force behind the event has been Paula Lahiff, the Group’s Company Secretary, and for so long involved in all aspects of social support; and acting as her right hand, Bridie McMahon. It has been their energy, foresight and vision, as well as begging for sponsorship and battling the Group’s Treasurer for money that has made it all possible.

The role of the Group’s staff under the leadership of Eamonn Farrell must be acknowledged; just the paperwork in sending out forms, accounts and dealing with bookings is a gargantuan task. The hotel, management and staff too are thanked for their help and hospitality.

However, in the end, the biggest THANKS will go to you – the Members for making this a memorable event.

MISSION STATEMENT of the POST POLIO SUPPORT GROUP

Our Mission is to create awareness and to provide information regarding the late effects of polio among Polio Survivors, statutory agencies and the wider medical profession, and to ensure that the needs of Polio Survivors relating to their condition are met to enable them to live with dignity

Published April 2008 by
The Post Polio Support Group,
Unit 319, Capel Buildings,
Mary’s Abbey, Dublin 7

Tel:       01 889 8920
Fax:      01 889 8924
Email:            info@ppsg.ie
Web:            www.ppsg.ie

Registered Charity No: CHY 11356

Company limited by guarantee and not having share capital.
Registered in Ireland No.: 354283

Editor: John R. McFarlane, c/o above address
Email: newsletter@ppsg.ie