Category Archives: Consultations

Communication and Information Review: Have your say, and make the NI Rare Disease Plan work!

Northern Ireland Rare Diseases Implementation Plan As part of the Plan we are working with the Department of Health and the HSC bodies to carry out a Communications and Information Review; and on the basis of the evidence gathered, to make … Continue reading

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Making our voices heard

We know that if something isn’t counted, it doesn’t count… And we all want to use our experiences and our knowledge to make positive change happen in our health and social care system.  So we are working to make sure … Continue reading

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Call to Action: Health and Social Care (Control of Data Processing) Bill

The NI Assembly is currently scrutinising the Health and Social Care (Control of Data Processing) Bill. If the Bill is approved and made law, it will regulate and safeguard the processing of information about patients.

Why is this Bill important?

We need this change in the law! Without it,  information about patients in Northern Ireland cannot be collected and  studied. So we won’t have reliable information,which is essential for planning and delivering health and social care services. This means our services are not evidence-based, and can’t be benchmarked against those available in other parts of the UK and wider afield. We have no way of knowing if our patients are getting high quality care or how well carers are being supported. We cannot identify where improvements are needed and what action can be taken to remedy gaps in services. Continue reading

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Access to Specialist Drugs – Share your Opinion!

NIRDP are glad to share information about a series of DHSSPS consultation events. Access to specialist drugs is vital. What do you think of the recommendations below? Can you attend a meeting and get your voice heard?   Announcement of … Continue reading

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Implementation Plan Consultation: Open Meetings

The Open Meetings on the Draft Rare Disease Implementation Plan are ongoing: 6 January 2015: Lecture Theatre, Level 2, South West Acute Hospital, 124 Irvinestown Road, Enniskillen Co Fermanagh, BT74 6DN, 3.30pm to 5.30 pm 7 January 2015: Mourne Country Hotel, 52 … Continue reading

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