Monthly Archives: July 2014

The Rare Disease Plan For Northern Ireland

The Ultra Rare Disease & Disorders Disabilities Foundation is wanting to see the Northern Ireland Plan for Rare Diseases The Plan Should Have Been Published In February This Year

All other parts of Europe has Published it plans of how to deal with Rare Diseases most other European countries have published its plans including Ireland,we are still waiting for Northern Ireland to publish its plans, the foundation would like to see how the Northern Ireland Health Service will deal with rare and ultra rare diseases if other parts of the United Kingdom and Ireland have already published their plans why has Northern Ireland only issued a letter of intent to publish it’s plans, this is just not good enough for patients who have Rare and Ultra Rare diseases.

The Public need to have this plan published to enable them to see if it goes far enough to deal with Rare and Ultra Rare Diseases,the foundation wants to see just what support the Northern Ireland Assembly plans to deal with the impact of rare and ultra rare diseases there are long-term plans needing to be put in place for the long-term care of children with rare and ultra rare diseases these children will have to have life long care and many of the children may need 24hr care we need to know what the Assembly Plans to do for this long-term care,The foundation also would like to see how the Assembly is planning to meet the financial cost of this type of care when they are already cutting the health care budgets.

Many of these children will need to go to special needs schools the Foundation would like to see how the Assembly are planning for children with special needs when they are cutting back on budgets for this type of care all these questions need to be answered,Northern Ireland’s health service is going through major changes in how they plan to deal with health care we see heath care budgets being cut and we also see large building programs at The Royal Victoria Hospital For Sick Children and The Ulster Hospital at Dundonald this investment is only to be welcomed but will it meet the needs of children who have rare diseases and ultra rare diseases.

The Foundation knows that Northern Ireland needs a centre of excellence for rare diseases is it not the best time to include these in the plans for both the Royal Victoria and The Ulster Hospitals, we also know the rest of the United Kingdom has many Centres of Excellence and Northern Ireland has none,on reading UK plans Northern Ireland will have to use the UK Centres of Excellence as they do not want to duplicate the services, this is all well an good if you have centres of Excellence in the first place but Northern Ireland and Ireland has none, the foundation feels this is just not good enough for Northern Ireland’s Children, who would fund the travel expenses and boarding expenses needed for families who may have to stay at a centre of Excellence in the United Kingdom for up to a year to enable the child to have treatment.

The Foundation is also concerned with plans to bring consultants from hospitals in the United Kingdom to treat children in Hospitals in Northern Ireland when required this is just not good enough for children in Northern Ireland,The Foundation knows only to well that children with rare diseases can change at any time and need specialist treatment that could be a matter of life or death for a child and it would have to wait on a consultant flying in from a hospital in the United Kingdom, the Foundation feels this service is just not good enough.

The Foundation wants answers we need to see the Northern Ireland response to Rare and Ultra Rare Diseases we cannot take a letter of intent we want to read the Assembly’s plan to help our children who have Rare and Ultra Rare Diseases, Northern Ireland needs to be the same as the rest of the UK and NHS England we need to read what plans our ministers and health service have planned for the Children Of Northern Ireland we need to know will our expectant mothers get screening for rare diseases and will our children recieve the same treatment as the rest of the United Kingdom.

The Ultra Rare Disease Disorders & Disabilities Foundation Charity NumberNI00089



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