Health Minister Jim Wells launching the Northern Ireland Rare Disease Partnership’s draft implementation plan for consultation.
People living with a rare disease are being urged to take part in a consultation aimed at shaping the future of the care they will receive.
Around 100,000 people in Northern Ireland are impacted by rare disease – that’s the population of Derry – and Health Minister Jim Wells has said everyone has a right to expect the best treatment and care that the Health Service could provide.
Mr Wells was speaking at the launch of the Northern Ireland Rare Disease Partnership’s draft implementation plan for consultation.
He also urged people impacted by rare disease – patients, carers, family members or medical professionals – to complete the consultation and shape the future of rare disease care.
The draft plan sets out a framework to support continued action and new developments to tailor how the Health Service provide services for people with rare diseases over the next six years.
Mr Wells said as Minister he was committed to ensuring that everyone who accessed the Health and Social Care system received the best possible level of care.
He added: “We all want to see improved outcomes for those living with a rare disease, whether they are a patient, family member, carer or member of the broader support community for rare disease patients.
“I see this Rare Disease Implementation Plan as the next stage of our journey to improve rare disease services in Northern Ireland and I would urge all stakeholders to respond to the consultation, so that my Department can be assured that the proposed implementation plan meets the needs of those living with a rare disease.”
People living with a rare disease now have 12 weeks to have their say on their care.
The consultation closes on 19 January 2015 and is available at http://www.dhsspsni.gov.uk/showconsultations?txtid=74325
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