News

 

European Polio Union Achieves Legal Staus with Registration in Belgium - September 2009

The EPU has registered in Belgium as a IVZW. (IVZW means: Internationale Vereniging Zonder Winstoogmerk (International Non-profit Association, pursuant to Belgium law).  IVZW registration no.: 0817.863.022.  The principal office address is : Walvisstraat 32, 2018Antwerp, Belgium.  To learn more about the EPU visit their web site at www.europeanpolio.eu

Read all about the presentation to the Joint Committee for Health and Children at Dáil Éireann on 22 July

Read the presentation (THE HOUSES OF THE OIREACHTAS)

Specially adapted cars go free on barrier free M50-Carol checks out the new arrangements

Barrier free tolling will be introduced for the M50 on 30th August 2008.

Vehicles registered as being specially adapted for a person with a disability, and thus incurring no vehicle registration tax, will not be charged for travelling through the barrier free tolling point. Drivers of vehicles which are registered as specially adapted do not have to take any action. Their number plate will be read as they drive across and, because it is registered on the vehicle registered database as specially adapted, no charge will be levied.

Drivers who have a disabled driver’s parking disc but who drive a car which has not been adapted will be charged as normal. They will need to register on www.eflow.ie before 30th August 2008 if they do not wish to incur higher than normal charges for crossing the barrier free toll area.

This information has been checked with Eflow customer service department, the National Roads Authority, the Vehicle Registration Unit and the Disabled Drivers Association on 28th July 2008. You can read further information on barrier free tolling on www.eflow.ie

No more trouble at the airport?

Shannon is first to respond with details of the new system! With effect from Saturday, 26th July 2008 One Complete Solution Ltd (OCS) shall provide PRM (Persons with Reduced Mobility) services at Shannon Airport on behalf of the Dublin Airport Authority towards compliance with the implementation of EC Regulation 1107/2006 (Rights of Disabled Persons and Persons with Reduced Mobility when Travelling by Air).

From this date OCS shall assume responsibility for all PRM requests for assistance and the efficient distribution/rotation of wheelchairs throughout the airport. The service shall be available daily between 0430 hours and midnight and shall be extended for situations such as delayed/diverted flights outside of normal hours of operation. OCS shall provide the service from their PRM reception desk in the Departures/Check-in area. Passengers shall continue as heretofore to make arrangements for PRM assistance directly with their airline, however non pre-booked assistance can also be requested from OCS at the airport on the day of travel.

While the PRM service will be operational from 26th July some infrastructural work such as the installation of PRM contact points in the car parks shall continue over the coming weeks. It is expected that PRM contact points in the Car Parks/Terminals and associated signage will be in place by mid August.

The airport experience for Persons with Reduced Mobility should be greatly enhanced by the provision of a quality service by OCS. The airport for its part is committed to making ongoing physical improvements throughout its facilities to further improve and enhance the travel Experience for PRM's.

Contact numbers for OCS at Shannon are as follows:

PRM Reception Desk in Departures/Check-in: 061 71(2074)
Airport Services Manager: 087 9495620
Email: prm.snn@ocsireland.com

SITA: SNNOCCR (This address will not be live until 01.08.08)

John Fielding
Airport Operations Manager
Date of Issue: 25th July 2008

Dilly and Friends Raise Funds for PPSG (courtesy of Westmeath Independent)

"The picture on the wall in Doe's Pizza in Moate caught my eye, it reminded me of the Northern comedian May Mc Fetridge and it was only on closer inspection I realised it was Jimmy Kinahan. Most people around Moate know Jimmy, a painter for many years and involved in many local groups. Like many others I knew Jimmy had suffered from Polio from a young age but until I saw the poster I had no idea that there was a Post Polio Support Group. Even then the significance of the group did not register. Looking deeper and reading phrases like Polio Survivors soon woke me up and gave me an awareness of a condition that I never knew existed. Looking at the Polio sufferers I knew – they all appeared to be coping well – but there is a sting in the tail for many sufferers.

It is estimated that there are approximately 4,000 survivors of polio living in the Republic of Ireland at present. Most of these people are middle aged or becoming elderly. The Post Polio Support Group is an organisation set up by Polio Survivors to assist their fellow survivors, particularly in relation to the Late Effects of Polio. Around 20 to 40 years after their original infection by Polio, many survivors are now experiencing new symptoms, which often require medical advice and treatment. This condition is known as the "Late Effects of Polio" or "Post Polio Syndrome". These symptoms are not age related and usually appear in the form of pain in muscles and joints; lack of strength and endurance, with increased muscle weakness and fatigue; respiratory and swallowing difficulties, often with problems relating to sleep; severe intolerance of cold; decline in ability to carry out customary daily activities such as walking.

The Post Polio Support Group exists to offer a comprehensive system of supports to Polio Survivors. Fundraising is key to knitting these together. The proceeds raised are applied speedily and directly to meet a variety of Survivor needs. While there is no known cure, much can be done to alleviate the symptoms and enable the retention of an independent life, often requiring some modification of life style.

It is for this cause that Dilly and friends participated in the recent Ladies Marathon and a week later than promised I have included the picture from their great day out. You can still support this effort by making your donation through Doe's Pizza or through Jimmy Kinahan.

 

RTE Six One News Item - Saturday, 19 April 2008

"The annual conference of the Post Polio Support Group in Sligo has highlighted great difficulties in accessing treatment for survivors.

The group has called for more centres of excellence to treat people who are suffering post-polio syndrome. The group says that over 4,000 people struck down with the crippling disease in the nineteen forties and fifties are now suffering the after effects of the disease.

Muscles which have worked overtime for years are now weakening rapidly and many find themselves back on crutches or in wheelchairs. However the group says people can wait for up to eighteen months for an initial appointment and there are not enough centres of excellence to deal with their problems.

They also called on the Government to provide all people diagnosed with post polio syndrome with medical cards and allocate grants to adapt their homes so that they can live independently and not be a burden of the state."

Quote courtesy of RTE News.  To watch a video stream of the item in full featuring Paula Lahiff & others click here  (Note: It is recommended that you have broadband or 3G internet connection to access video stream.)

Diane Odell, whose death has been announced, lived in Denmark and contracted polio a couple of years before the vaccine was introduced there. Ever since she had been confined to her"Iron lung". Her life came to an abrupt end due to a power cut compounded with a faulty emergency generator which refused to start up. She spent all of 58 years in the respirator and died at 61 year of age.

Even though she spend all her life in the respirator, she managed to go through high school, take courses at a university, and also wrote a children's book about a star called Blinky'. In an interview a few year ago, she told the reporter that she had written the book, in order to show young handicapped people that they shouldn't give up.

The photo show Diane in her confined space.. "jernlunge" is the danish for "Iron Lung"

Parents face jail over failure to vaccinate against Polio

Associated Press (March 12, 2008) - “As doctors struggle to eradicate polio worldwide, one of their biggest problems is persuading parents to vaccinate their children. In Belgium, authorities are resorting to an extreme measure: prison sentences. Two sets of parents in Belgium were recently handed five month prison terms for failing to vaccinate their children against polio. Each parent was also fined €4,100 ($8,000)… The parents can still avoid prison — their sentences were delayed to give them a chance to vaccinate their children. But if that deadline also passes without their children receiving the injections, the parents could be put behind bars… The polio vaccine is the only one required by Belgian law. Exceptions are granted only if parents can prove their children might have a bad physical reaction to the vaccine… Aside from Belgium, only France makes polio vaccinations mandatory by law. In the United States, children must be vaccinated against many diseases including polio, but most states allow children to opt out if their parents have religious or ‘philosophical’ objections… Ethicists argue that people who refuse vaccinations are taking advantage of everyone else who has been vaccinated.” To read the full story click here.

League of Heath Adopts Group as Chosen Charity

The PPSG wishes to thank the League of Health for adopting the Group as their sponsored charity in 2006/07.   The League of Health which has centres in Dublin and adjacent counties to promote fitness among ladies, raised the funds through campaigns which included the collection of “brown” coins, the proceeds from the sale of their calendar, and raffles and donations at their Annual Dinner held in October at the National Yacht Club, Dunlaoghaire, which was attended by Hugh Hamilton and Anne Burns.   A cheque for a very generous €8,000 was presented to Hugh by Carol MacNeaney on behalf of the League on 13th November at the end of one of their fitness classes at Taney Church Hall, Dundrum, Dublin.

The photo shows, left to right, Carol MacNeaney, Chair League of Health Committee, Isolde McCullag, Principal League of Health, Anne Burns, Director PPSG and Hugh Hamilton, Chairman of the PPSG at the presentation in Dundrum.

We thank the League of Health for their generosity to the Post Polio Support Group.

2007 Best Year for Members' Benefits ever

The Board of Trustees and Directors of the Group met on 9 February for a regular meeting.  One of the main items on the Agenda were the financial results for 2007 that are to be presented to the Group’s AGM in April.

Preliminary figures show that the PPSG had its most successful year to date in dispersing benefits to members.  Not only did 174 members receive a winter heating allowance but more money than ever was spent on the provision of Aids and Appliances, such as orthotics, wheelchairs, etc, as well as providing many sessions of chiropody and physiotherapy.  The year also saw a large number benefit from the awards in the Group’s Respite Care Scheme.

Of course all of this had to be funded and a large proportion came from more that the €103, 000 raised by supporters, and volunteers from marathons, corporate sponsors as well as private donors.  Without this top up funding we certainly would not be able to tackle areas that fall outside the remit of funding that is received from the Health Service Executive to help members as well as support the central staff upon whom the Group relies to heavily.

The Group’s audited accounts will be laid before the AGM in April after that they will be posted on the website and a shortened version is to be published in the June edition of the Survivor

The photo shows staff members Ursula Treacy, Accounts and Admin and Ann Doohan, Admin, preparing the books for audit!

Chairman of PPSG appointed as Vice Chair of European Polio Union

Following the successful meeting and demonstration at the European Parliament in Brussels, the Chairman of the PPSG, Hugh Hamilton, has taken up the cudgel as Vice Chair of the European Polio Union.  Its vision and goal being of a Europe where people with polio and Post Polio Syndrome have all the resources they need to lead full active, independent lives and of a world where polio is completely eradicated.

The EPU brings together sister organisations from 10 EU member states (Belgium, Denmark, France, Germany, Hungary, Ireland, Italy, Netherlands, Spain, United Kingdom) as well as Switzerland.  Its is trying to establish links with support groups in the newer EU entrants as well as other countries in the former Eastern bloc.

The EPU has secured some small funding to start the work but everyone realises that it will be a hard task to get Post Polio Syndrome recognised throughout the continent and that it may take some years before its vision is realised.  The next meeting of EPU delegates takes place in Leicester in England over the weekend of 16/17 February 2008.

South Dublin County Council carries out assessment of need for local authority housing

The Group has received notification from South Dublin County Council that it is making an assessment of need for local authority housing accommodation effective at 31 March 2008.  If you require or are likely to require accommodation from the South Dublin County Council, and are in need of housing and unable to provide it from your own resources you need to contact the following:-

South Dublin County Council,
Housing Department, Housing Allocation Section,
County Hall,
Tallaght, DUBLIN 24

Tel:  01 414 9090

Or email htallocs@sdublincoco.ie

BEFORE 14 March 2008.  You may not require housing yourself but may know someone else who does.  Let them know.

As for other parts of the country, this work is being carried out under Section 9 of the Housing Act 1988, so other County Councils could well be seeking similar information ask  your local Housing Department.  There is no harm in asking – and you never know how you, a loved one or friend might benefit!

Post Polio Syndrome - Management and Treatment in Primary Care

The foyer of Capel Building, the home to the office of the Post Polio Support Group, saw the launch on the evening of 19 July of "Post Polio Syndrome - Management and Treatment in Primary Care". The book entitled "Post Polio Syndrome - Management and Treatment In Primary Care" was produced for those working in the primary health care field, i.e. General Practitioners, Physiotherapists and their colleagues in disciplines too many to mention. Written by professionals in primary care it reflects their research and experience. It also benefited from the input of the leading Irish Neurologist in the field, Dr. Orla Hardiman and was produced in conjunction with Polio Survivors.  The book is being distributed to all GP surgeries in Ireland in book and CD ROM versions, it can also be downloaded free of charge at the PPSG Publications page .

New Rules for Disabled Persons Travelling by Air

From July 2007 EU, law has protected the rules regarding the rights of passengers with disabilities. Airports will now have a duty to ensure that from the point of departure to the point of arrival, disabled travelers will be transported ‘seamlessly.’ This will be overseen by the airport management and by a central national body expected, in Ireland, to be the Civil Aviation Authority. The key factor of the legislation is that disabled people cannot be refused transport on the grounds of their disability. A spokesperson said, "Airlines are going to be under pressure because they cannot refuse to take disabled people — the days of disabled people being refused onboard are over", but as with everything there is a safety let out clause. With 48 hour advance warning, airports must assist disabled people. This could be assistance at check-in, boarding, or disembarking from aircraft, for example, and clients will not be charged for this assistance. Even if disabled users are unable to provide 48 hour advance warning, or “pre-notification” as it was called in the legislation, airports will still have to make their best efforts to provide as full and accessible a service as possible.  Rather than applying only to "persons of reduced mobility" as with previous guidelines, the new EU law covers people with all types of disabilities including hearing impairment, visual impairment and those with learning disabilities.