Little Children All Over The World Need Our Help

When I am raising funds for the Cavan Tommy Hoey Trust Iam questioned is this money for the children at home our answer is Rare Diseases Has No Borders, rare disease Effects Children All Over The World It Does Not Matter Where You Live

Sunday, February 20, 2011

Belfast Rare Disease Day Who Is It For And Why Is It So Important For Northern Ireland

Northern Ireland has for so long been trailing long behind other european countries in health and mental health services we have the rest of the UK expand its hospital funding in both health services and mental health care we have seen the uk moving on also in its building programes across the UK in the mean time we have seen little or no investment in the health services in Northern Ireland and little to none in the Mental Health Services because of this Northern Ireland is already behind in investment in services for both Mental Health and Health Services.We have seen for years how Budgets in Northern Ireland have mainly been used for policing and security leaving the Health Services and Mental Health Services trailing way behind the rest of the united kindom in many aspects of health care,while Northern Ireland depended on many community groups to fill the shortfalls. Northern Ireland is now coming out of a violent past that in its self is adding more pressure on to the Health Service and the Mental Health Services the issue of Health Services and Mental Health Services is now bending under the strain of a nation that has seen many horrors and lived under so much strain it is now paying the price of under funding at a time when the rest of the UK are 36 years ahead of Northern Ireland in many areas. Northern Ireland is being put under pressure to cut budgets to services like Health and Mental Health, we hear on a daily basis how mistakes are taking place in a Health Service that is bending under the strain of under funding, we hear of our young people not coping with the strain of life in a country that is trying to show the rest of the world that we have acheived the prize of peace but they do not see the total lack of care for funding in our Health and Mental Health Services, we read on a weekly basis of the mounting toll of our young people committing suicide, yet we think nothing of spending milions of pounds on security.Once more we look to the community to fill the shortfall of an ever growing problem of under funding of Mental Health Services. Northern Ireland is a very provincial country, the people within Northern Ireland are very proud of that, they see services being cut at a time when ever the health Services are bending due to lack of investment in the past, our polititans are now having to carry out cuts that will effect many peoples lives.When our politicians are blaming each other on the problem and making their arguments under the old party politics,  they cannot seem to grasp the obivous, our Health Service is already behind the rest of the UK and europe and has been for over thirty years they should be uniting to have our health service brought up to the standards of the rest of the UK and europe.We must question our local politicians if we cannot fight for our Health and Mental Health Services what is going to happen to our young children who are lying for weeks in our hospitals waiting on a clear diagnosis of rare diseases is our young children going to have to pay the price of this under funding are they the group that are so far down the list in treatment, that they will pay the cost, its not the case anymore where our young children can just be swept under the mat, RARE DISEASES are not so rare children are dying from Rare Diseases, children are already paying the price of under funding, research for rare diseases are already long down the list in drug research children have to pay this price we see them lying for weeks without proper treatment and sometimes in great pain without even the hope they will be cured of somthing that no one has heard of,.Rare Diseases are here in Northern Ireland but we are not on a level playing field,our children do not have the same chances as the rest of the UK or europe, yet our politicians remain silent,  this is because its an issue they feel is not a vote winner like the politics of the past green and orange, do they live in a bubble that Health Services, Mental Health and Rare Diseases is just not on the radar, are they ever going to stand up for the weakest in our society and demand from the UK Goverment more funding for our Health Services , they know how to make demands, they are expert at it they can take teams over to 10 Downing Street to demand millions for security so why do we not see the same vigour for the weakest in our communiy, we have seen for too long the sickening smiles of some politicians blaming others for the mess in our Health Services while we watch children with rare diseases paying the price and sometimes the ulitamate price.Health Services are everyones right even though most only see it when a friend ,a child, a mother, a father, aunts or uncles need it, we should not become smug about Health, life can change in a second and we should never forget no matter who or what job you do or how much money you have.Take time and stand back for a moment and think to yourself of the people who are in our hospitals people who mean someting to someone else,someone who is loved, our doctors and hospitals give them the best chance at life,  think about the young parents of a young child to be told it not well and is not responding to treatment you trust the doctors to help, only to be told after weeks of no sleep missed meals that your little child has a rare disease  that medical research have no cure for, and your child on the journey of RARE DISEASE, no one can help you are walking in the shoes that many others have walked in the journey that medical experts cannot tell you how it will end you are in the nightmare of RARE DISEASE, and all what comes with it the guilt that you have given your child this nightmare you life as you once knew it is over times when you thought nothing of going for coffee or your weekly shopping life as you knew has chaged in the blink of a eye your life now means long stays in hospitals travelling miles to appoimtments in other hospitals in the process that many other children have had to make before you in the hope that someone will wake you up and tell you its all over we have a cure. Rare Disease takes away your life and replaces it with a daily battle of caring for a child that no one can cure but you will try everything go anywhere  do anything just to find a cure.You have to walk in the parents and the families shoes to know what this nightmare is like, yet so many politicians and our media seem to forget the families only to keen to call for cuts in our health Budgets and cuts in support services that families with rare disease need and depend on, we ask you as a politician.media agent.young up and coming professional, to step back and think about the people who elected you and trust you to fight for their rights and for health care.we ask the media to report on the sick and the children who are fighting for life itself and that children are also involved some with diseases that man has not even found a curefor.The young professionals whose life has never been so good that life can change in a blink of a eye and that we havenot found a person yet who is immortal. Rare Disease and our Health  and Mental Services are there for everyone both rich and poor it is a gift that goverments have looked after  for years , you the politians must think of the communities who you have elected you, not to break the trust that your community has placed in you and has made sure you were elected STAND UP FOR PEOPLE WHO SOMETIMES NEED YOUR HELP SUPPORT RESEARCH AND FUNDING FOR RARE DISEASES AND SUPPORT OUR HEALTH AND MENTAL HEALTH SERVICES IN NORTHERN IRELAND SHOW YOU CARE ABOUT THE COMMUNITY WHO ELECTED YOU

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