Gerald Nash (Louth, Labour) | Oireachtas source

The Minister of State may be aware that inflammatory bowel disease affects 15,000 to 20,000 people in this country. I am one of those people. Dr. Seamus Hussey, who is a specialist paediatric gastroenterologist based in Our Lady's Children's Hospital, Crumlin, has stated that there are approximately 80 to 90 new diagnoses of children with IBD, including Crohn's disease and colitis, at that facility each year. There are many more across the State.

As stated, I come to this debate with some degree of personal experience, having been diagnosed with Crohn's disease at 14 years of age, which is 23 years ago. During my mid-teens I received ongoing treatment in cramped adult wards in Our Lady of Lourdes Hospital in Drogheda. Through my work with organisations like Gutsy Kids, which represents young people with IBD and their families, the Irish Society for Colitis and Crohn's disease and doctors, such as Dr. Hussey, I have identified a clear need for the development of current services at Crumlin hospital, the de facto national centre for young people with Crohn's disease and colitis.

The centre does not receive resources commensurate with its effective status.

Young people with inflammatory bowel disease, their families and the expert staff who care for them need designated wards to cater for their needs. Owing to the nature of the chronic debilitating conditions associated with the condition, they need ready and efficacious access to toilet facilities, rather than a 50:50 chance of a lavatory becoming available at the frequent times that patients with the condition require one.

Dedicated psychology professionals are required to work with young people with this dramatic and life changing condition, as are dedicated inflammatory bowel disease nurses. Welcome as they are from a pragmatic point of view, the nurses from the private sector who are supported by drug companies and often become available at present, are not sufficient. There are few, if any, inflammatory bowel disease specific resources in the public health service for either adults or children with the condition.

We need a clear focus on dealing with this growing, chronic, life changing and frequently limiting condition. We need a clear national clinical programme to ensure care pathways are developed in a planned and integrated as opposed to piecemeal manner. They often result from the commitment and focus of individual clinicians, rather than the vision or lack thereof of health administrators, notwithstanding the resource position in which we find ourselves. If we are to give children who will be diagnosed with inflammatory bowel disease a sense that their condition and they, as patients, will be taken seriously, we should use the once in a lifetime opportunity presented to us by the decision to develop the national children's hospital to provide dedicated and specialised wards for such children and those who care for them. This is critical and we must start to plan for it now.

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