Thursday, 18 July 2013
Topical Issue Debate
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.
I thank the Deputy for raising this issue, which is not the subject of many pub conversations. The number of people affected by inflammatory bowel disease is significant and I welcome the opportunity to address the issue. Currently, children with inflammatory bowel disease are cared for at Our Lady's Children's Hospital, Crumlin. The condition is diagnosed by colonoscopy and children are managed by gastroenterology consultants with dietetic and social work resources working as part of a team. Shared care services have been developed with some paediatric services on a national basis and, where possible, children are managed locally with support from Crumlin hospital.
Currently, approximately 450 children with a diagnosis of inflammatory bowel disease are attending Crumlin hospital, some of whom require only infrequent support. I understand an increased incidence of the condition has been seen in children in recent years. In 2010, Crumlin hospital saw 53 patients diagnosed, with numbers averaging almost 70 new cases per annum since then. Given the increased numbers of children presenting, resources for this area are under review. I understand that a proposal has recently been agreed to appoint a nurse specialist to support a multidisciplinary approach to the service.
As with the other Dublin paediatric hospitals - Temple Street Hospital and Tallaght Hospital - all services at Crumlin hospital, including those for children with inflammatory bowel disease, will move to the new children's hospital when built. The new children's hospital is one of the most important projects to be undertaken by this Government. The hospital is a key commitment in the programme for Government and the largest project within the current capital plan.
As the Deputy will be aware, the new children's hospital will be co-located with St. James's Hospital on its campus. Co-location with a leading adult academic hospital was recommended in 2006 by the McKinsey report, Children's Health First. A significant number of consultants in paediatrics treat both children and adults. In addition, for some children with conditions that are more commonly seen in adults, they may be better managed by an adult specialist with a special interest in children who has particular expertise in dealing with these conditions. I understand that, for instance, one example is bowel perforation in inflammatory bowel disease.
In addition, some patients need to be managed across a lifespan, from childhood to adulthood, including children with gastroenterology conditions. These children will need to experience a smooth transition to adult services in due course. Where possible, those from within the Dublin catchment area can transition to the co-located hospital. For these patients, co-location enables the development of a more structured transition programme from paediatric to adult services.
The specific design and infrastructural requirements for the new hospital will be developed and finalised as the project proceeds. In this regard, the children's hospital group board has a key role, as end user and client for the project, in helping to ensure that the new facility is optimally designed for the treatment of inflammatory bowel disease or any other condition. Specific care is required for children.
I welcome the Minister of State's response and the commitment she has shown to this issue. I too am committed to this issue and I intend to remain in contact with the Minister, Department and Health Service Executive to try to convince decision makers of the necessity to provide dedicated ward space and services for young people with inflammatory bowel disease. This condition is becoming much more prevalent in the western world, with the numbers involved having grown exponentially in recent years. The State must acknowledge this increase by providing the resources required to meet the challenge.
Children with this debilitating condition and their families have an acute need for privacy, given the personal and often embarrassing nature of some of the symptoms associated with it. The Minister of State and her colleagues will be mindful of this and I expect the children's hospital group board will also be mindful of it when it makes decisions on the provision of services at the national children's hospital. In the meantime, it is extremely important that we focus our attention on the needs of the young people who are using the service provided by Dr. Seamus Hussey and his team, for example, in Crumlin hospital. They are a dedicated group who are working with dedicated parents to secure the best possible outcomes for the children in question.
The Deputy has raised this issue at an opportune time. The planning process for the new national children's hospital is ongoing and the design team is in place. Many people are not aware of inflammatory bowel disease. Given the nature of the condition, privacy and ease of access to infrastructure is extremely important. A linked service is needed to regional areas to enable children to be attended to more easily and stay closer to their families. Not everyone should be required to come to Dublin for treatment.