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Cross-border hospice care for youths mooted

31 Aug 2015

The Department of Health (DoH) 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. New arrangements will have to be agreed by the relevant authorities in Northern Ireland (NI), the DoH has said.

The National Clinical Programme for Rare Diseases has been established, led by Prof 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 expected that this office will be in place later this year.

Work is continuing within the Ministry and the Executive 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 Diseases Plan recognises that efforts should be made to realise shared benefits for rare disease patients on the island of Ireland. Officials from the Department have met with their counterparts in NI to consider these issues.

The subject of rare diseases has also been discussed as a bilateral issue at the North South Ministerial Council. There was broad agreement in principle to identify specialist areas for future rare disease collaboration and develop these further, Minister of State Kathleen Lynch said in response to Dáil questioning by Fianna Fáil Health Spokesperson Deputy Billy Kelleher.

The Department of Health, Social Services and Public Safety (DHSSPS) in NI has carried out a public consultation on its draft implementation plan for the UK Strategy for Rare Diseases, which was published in November 2013.

The draft plan commits the DHSSPS to identifying opportunities to work with healthcare policy makers, commissioners and providers in the Republic and organisations involved in research in the field of rare diseases with the intention of maximising the potential benefits arising from collaboration for both jurisdictions.

Gary Culliton

Click here to view the full article which appeared in Irish Medical Times