NHS and Wales Start Testing Children For Rare Diseases Why Not Northern Ireland

This is great news for children if you live in England or Wales but what happens if you live in Scotland or Northern Ireland are the children in Northern Ireland being left up to our politicians from Northern Ireland or for that matter our health service surely not,Why is our children being left out health services are finding it hard to cope at the moment,We just don’t have what we need to be able to test for rare diseases or ultra rare diseases in Northern Ireland we don’t have any centers of excellence and that is down to costs.

We are still waiting to have our Northern Ireland Strategety On Rare Disease Published we are still in the consultation process when ever all other parts of the UK and Ireland have published theirs Northern Ireland is sleepwalking into major health problems within its health services Rare diseases comes way down a long list of things to do and to deal with in the Health Services and UK seems to be not helping in any way at all Funding has always been a problem and with the state of the finances Northern Ireland is trying to play catch up with the rest of the United Kingdom.

The Health Service Needs government funding and needs it quickly, yet the United Kingdom Government just can’t see beyond making cuts that will damage Northern Ireland and its health services even further than they are already are, So Rare Disease is in danger of being put to the back of the filing cabinet we need strong politicians who can give leadership and who can stand up to the United Kingdom Government and demand more money for our health services if Northern Ireland is to work on its own it needs to be led by leaders people who can stand up and make decisions and stick to them we seem to forget we are dealing with children who cannot talk for them selves our leaders should take a walk round the wards where little children are fighting a daily struggle some times without the correct drugs due to the diseases being so rare and a child can’t tell anyone how they really feel if you have not seen a member of your family who is fighting a rare disease it is something I would not wish on anyone,Or have to go through again.

Northern Ireland needs its own testing facilities we have two great hospitals The City Hospital and the Royal Victoria Hospital testing could be carried out there, but they need the funding to catch up with other testing facilities like the United Kingdom they have 39 centres of excellence and capable of testing for rare and ultra rare diseases they are known world wide for their experience in genetics and are world leaders in research for rare diseases and Northern Ireland only needs one of these centres to make Northern Ireland capable of testing for rare diseases and ensuring that the children in Northern Ireland are the same as the rest of the United Kingdom and their parents can be assured that their children are getting the same treatment as the rest of the United Kingdom.

We look to our Health Services and our Health Minister to ensure that our Children get a testing facility in Northern Ireland capable of testing for Rare and Ultra Rare Diseases we need an end to restrictions on Doctors using the higher rate of testing for diseases due to funding restrictions


About jigsawtree

Hi my name is Terence Hoey I am CEO of The Ultra Rare Disease Disorders & Disabilities Foundation LTD a non for profit charity our address is Palmerston Road Sydenham Belfast Co Antrim Northern Ireland BT41QD

Posted on January 5, 2015, in Children With HLH, Children With Rare Brain Diseases, Children With Rare Cancers, Children With Rare Diseases, Children With Ultra Rare Diseases, Children With XLP, European Plan For Rare Diseases, Uncategorized. Bookmark the permalink. 2 Comments.

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