Mary Butler (Waterford, Fianna Fail) | Oireachtas source

I thank Deputy Tully for raising this really important issue. All of us in the House fully appreciate how devastating a diagnosis of a rare disease can be for patients, their families and carers. There is cross-party support for doing everything we possibly can to help patients who live with this awful condition on a daily basis. As Deputy Tully said, EB is a rare, life-long genetic condition which causes fragile, blistering skin. I fully recognise and appreciate the difficulties experienced by patients suffering from this painful condition.

There are approximately 300 patients in Ireland with EB, with around 60 new patients annually. Children with EB are cared for in the multidisciplinary clinics in CHI, Crumlin, while adult patients are treated at a multidisciplinary clinic in St. James's Hospital. Care for EB requires the involvement of many different clinical specialists to extend lifespan and improve quality of life. A considerable amount of work has been undertaken to enhance the availability of treatments for those suffering with EB. For example, in recent weeks the HSE published a rare disease care pathway for the diagnosis and multidisciplinary care of inherited EB.

This Government is fully committed to doing everything possible to assist people living with a rare disease. Significant progress has been achieved under the National Rare Disease Plan 2014 to 2018, including the establishment of the HSE national clinical programme for rare diseases and a national rare disease office. In February, the Minister for Health announced a plan to develop a revised national rare disease plan in line with commitments in the programme for Government. Initial work on the new plan has commenced and a steering group to progress the new plan is expected to be convened in the coming weeks. Furthermore, as part of the development of a new plan, a patient forum will be established to ensure that the plan meets the needs of patients and families affected by rare diseases.

On funding, following the announcement of the budget allocation for the Department, the Minister for Health, Deputy Stephen Donnelly, will shortly be issuing a letter of determination to the HSE outlining my priorities and funding levels for 2024. This will be the basis on which the HSE will draw up the national service plan. It is not until the conclusion of the process that a detailed breakdown of new development will be available.

I would also like, as Deputy Tully has done, to acknowledge the brilliant work done by Debra Ireland on behalf of patients and families impacted by EB. I take on board what Deputy Tully said about home nursing care - not so much the lack of training but where if one nurses moves on to another job, the continuation may not be there. As it is a rare disease, with 300 patients in Ireland suffering from it, I can understand the point Deputy Tully made about not everyone having up-to-date information on how to deal with. However, I will certainly bring her concerns back to the Minister. I am familiar with both EB and with briefings that Debra Ireland has given previously. It is great that we have people like Emma and Liz coming forward and talking out about how difficult it is with EB.

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