The National Clinical Programme for Rare Diseases has been established, led by Professor Eileen Treacy. This will ultimately be a channel for advancing and implementing recommendations in the HSE Rare Diseases Plan. To support the Clinical Programme, a Rare Disease Office is being established by the HSE and it is anticipated that this office will be in place later this year.
Work is ongoing within my Department and the HSE to identify potential opportunities for improving the delivery of healthcare through clinical linkages and partnerships on an all-island basis, such as the provision of radiotherapy services at Altnagelvin or the development of an all-island model of care for congenital heart disease. The Rare Disease plan recognises that efforts should be made to realise shared benefits for rare disease patients on the island of Ireland. Officials from my Department have met with their counterparts in Northern Ireland to consider these issues. The subject of Rare Diseases has also been discussed as a bilateral issue at the North South Ministerial Council. There is broad agreement in principle to identify specialist areas for future rare disease collaboration and develop these further. In this context, my Department is in consultation with the HSE regarding the scope that may exist for cross border hospice care for children with life limiting and terminal conditions. Any new arrangements would have to be discussed with, and agreed by, the relevant authorities in Northern Ireland.
The Department of Health, Social Services and Public Safety (DHSSPS) in Northern Ireland has carried out a public consultation on its draft implementation plan for the UK Strategy for Rare Diseases, which was published in November 2013. Under theme 6, “Collaboration between Northern Ireland and the Republic of Ireland”, the Northern Ireland draft Plan commits the DHSSPS to identifying opportunities to work with healthcare policy makers, commissioners and providers in the Republic of Ireland and organisations involved in research in the field of rare diseases. The intention of this would be to maximise the potential benefits arising from collaboration to meet the respective needs of both jurisdictions.
