Monthly Archives: December 2014
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The Northern Ireland Assembly could collapse will it also mean the Rare Disease Consultation Plan will also go down with it,The Foundations biggest fear is that if a plan was not produced it would be left on the long finger, What will happen if it is direct rule with the United Kingdom Government also fails to produce a plan as they are also having discussions within and outside the government whether or not to stay within the European Union and if the United Kingdom was to pull out of the European Union what will happen to their plan will it also be put in danger we feel the United Kingdom Rare Disease Groups would need to have assurances on the plans that have already been agreed.
Rare Disease and Ultra Rare Disease Patients, families and carers should be kept updated on how it may affect them and how it could affect their child’s treatment, How will leaving Europe impact on our health services and diagnosis of new Rare and Ultra Rare patients Northern Ireland has a land border with a member state the NHS in its Rare Disease consultation document stated that Northern Ireland was in a unique position as having a land border with a member state could work on joint interests,We see that also as a major plus to Northern Ireland as it could mean Hospitals on both sides of the border could work together and share information we see that as a major step forward for the health services of Nothern Ireland as we thought that moving children’s heart services to Hospitals in the South of Ireland a great step forward it can only be good for the patients.
The Foundation will be releasing its own response to the consultation document after it has discussed with other interested groups and local politicians we could not understand why we are going through another consultation when the United Kingdom released its Strategy for Rare Disease and Mr Edwin Poots signed off on it, we felt it was a total waste of time and money that the Northern Ireland Health Services do not have to produce another consultation document when it already had its chance to raise any concerns that it had if any at that time of the United Kingdom Consultion Document .The Foundation felt a plan should have been published with Scotland,Wales,Ireland, to ensure a complete linkage and commitment in how Scotland,Wales,Northern Ireland and Sourthern Ireland could work together and share research and information and agree that all members make links with orphanet europe.
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Has now been released for consultation, but it is failing in many aspects of dealing with rare diseases and links with Southern Ireland and its major Hospitals yet it stated in the NHS Consultation that Northern Ireland was in an ideal situation that it had a land border with another member state of the European Union and they could work to further to the needs of patients with rare diseases,it has only been given a few lines in the whole Consultation.
Also, this document falls far short of caring for patients with Ultra Rare Diseases in fact, they have not even been included in the Consultation process to find out what patients with an ultra rare disease have to go through they also seem not to grasp that we are dealing with Children from the age of five years old to ten year olds as rare and ultra rare diseases affect children in that age group the Consultation Document fails to take in the care that is needed for a child with an ultra rare disease and how this is causing the family to break down leaving a single parent to cope with round the clock care,
Ultra Rare Diseases are life limiting, but due to the prognosis a child can extend its life and the consultation does not cover this important issue as it brings more difficulties for the parent/parents as the child grows older it needs more help and more attention and more specialized treatment and more care in the home and the needs of the child are greater,Health Care in the Community has not been included for ultra rare disease patients the whole process has been let down because of the lack of understanding about Ultra Rare Diseases,and Rare Diseases
Due to the Consultation Document it fails to include the hospitals in the South of Ireland and how it plans to include this vital link to the rest of the European Union that the NHS sees as a vital link to Northern Ireland that needs to be explored the document also fails to recognize the importance of links between member states health services and fails to include and see the benefits of joining the ORPHANET web site for information and links to other groups in Europe Please read our full response to the Northern Ireland Consultation Plan On Rare Disease if you want to email us in regard to our short statement please do so by contacting firstname.lastname@example.org