Tuesday, 23 May 2017
Approximately 40,000 people in this country have Crohn's disease or colitis. I am one of them; I have had this condition since I was 14 years of age. I was diagnosed with it in 1990. As the Minister of State will be aware, the prevalence of this condition is growing and it is very much a condition found in the western world. Alarmingly, most people in Ireland who are diagnosed with the condition are diagnosed between the ages of 15 and 30. In that respect, at least from a diagnosis perspective, it is very much a young person's condition. It is also very striking that cases in Ireland among children have trebled since 2003.
We are not certain of the causes of this debilitating and often life-altering condition but we can be certain of some matters. We know from a research report entitled Gut Decisions, published two years ago, that inflammatory bowel disease, IBD, costs the health service as much as €185 million a year. In Ireland, 90% of patients with inflammatory bowel disease are hospitalised within five years of their diagnosis. The international average is about 85%. A staggering 49% of people who have inflammatory bowel disease have either lost or have had to give up their job as a result of their condition. That is quite a staggering statistic. Behind each and every one of those stories lies a personal story of difficulty, loss and financial consequences.
We also know from talking to medical professionals and from the research undertaken in this area that one of the greatest barriers to the delivery of better patient care is the absence of a sufficient number of specialist inflammatory bowel disease nurses. It is sad to say that, unfortunately, not a single one of the recommendations made in the Gut Decisions report published in 2015 appears to have been progressed or implemented. That is why it is critical that the Government undertakes to explore the idea that we should have a coherent, cogent national strategy to deal with Crohn's disease and colitis. If, for example, we doubled the number of inflammatory bowel disease nurses - currently, there are on 12 wholetime equivalents but we need 24 to 28 - this would remove a great deal of pressure from emergency departments and from our acute hospital care settings.
Last Friday was World IBD day and I joined the Irish Society of Colitis and Crohn's Disease, Professor Colm O'Morain, and other experts in the field to call for the doubling up of specialist IBD nurses. These are, essentially, expert nurses, located unfortunately only in 48% of the hospitals across this country, who are at the end of a telephone and can assist people with their medication, dietary plans and with other very basic interventions, which would prevent a Crohn's disease or colitis patient from having to queue in a cramped emergency department, where there is often a difficulty in terms of accessing toilets, and can manage their conditions much better in what we might describe as a primary care setting or primary care intervention.
We need a coherent national strategy to deal with this condition that is growing in prevalence by the day. One of the first steps we could achieve in doing that is to commit to spending as little as €1 million annually to provide for the doubling up of inflammatory bowel disease nurses.
I thank the Senator for raising this very important issue with which I know he has a personal involvement. He has also raised it over many years. I accept his sincerity and integrity in regard to it. It is an important issue in terms of broader society and the broad planning of our health services. I am delighted that I have been given the opportunity to discuss Crohn's disease and colitis.
My Department recently met with the Irish Society of Colitis and Crohn's Disease and the Health Service Executive, HSE, about patient care for these conditions. There are two principal forms of inflammatory bowel disease, IBD, namely, ulcerative colitis, UC, and Crohn's disease, CD. There is no current data on the incidence and prevalence of inflammatory bowel disease in Ireland. However, it is estimated that approximately 40,000 individuals suffer with IBD.Population based studies from a range of European countries suggest a similar rise in the numbers of new cases in the adult population.
Crohn's disease is a very rare condition. It is estimated that for every 100,000 people, there will be seven new cases of the disease a year. Most cases of the disease first develop in people between the ages of 16 and 30 years, although the condition can affect people of all ages, including children. The disease affects slightly more women than men. The outlook for patients with the disease is highly variable. There can be long periods of remission that can last for weeks or months during which they have no or very mild symptoms, followed by periods during which their symptoms flare up and are particularly troublesome. There is no cure for the disease. However, medication is available that can be used to treat the symptoms and prevent them from returning. Approximately 80% of people with the disease will require surgery to relieve their symptoms, repair damage to their digestive systems and treat the complications of the condition.
Within the acute hospital system, the provision of care for individuals with inflammatory bowel disease is largely undertaken by the gastroenterologist, with individuals who require surgical intervention falling under the care of lower gastrointestinal disease consultants.
While the HSE has no specific programme for inflammatory bowel disease or Crohn’s disease, the work of other HSE programmes will impact positively on individuals with colitis and Crohn’s disease. They include the BowelScreen and endoscopy programmes which contribute to early diagnosis. Given the increased incidence and use of medication, the HSE is working with gastroenterologists and recently established a group to look at developing a model of care for the use of biological agents for the treatment of inflammatory bowel disease. It is estimated that of the 40,000 patients in Ireland with the disease, approximately 8,000 are receiving or require treatment with these agents. This model of care will look at the following areas: the criteria for treatment of inflammatory bowel disease; appropriate prescribing of biosimilars; entrance and withdrawal criteria for the use of these treatments; and appropriate prescribers and centres for treatment. The HSE group developing the model of care has recently commenced meeting and it is anticipated that it will set out the clinical management of inflammatory bowel conditions such as Crohn’s disease and ulcerative colitis. I await the completion of this model of care for the purposes of determining any further action that may be required.
I thank the Minister of State for his reply. It is very interesting that the HSE and his Department are taking the approach that there should be a new model of care in assisting and treating inflammatory bowel disease patients across the country. I appeal to the Minister of State to give serious consideration to the initiative I outlined in my initial contribution, that is, the engagement of 28 inflammatory bowel disease nurses across the country. As I said, less than half of the hospitals across the country have inflammatory bowel disease nurses available to them who could make early interventions in dealing with conditions such as Crohn's disease and colitis to empower patients to manage their condition in a better way. It is the classic no-brainer in terms of spending approximately €1 million each year to prevent people from having to present at the local emergency department and minimise the risk of their having to undergo very invasive and complex surgery. In that context, we need a national strategy to address all of the implications of Crohn's disease and colitis, conditions that are becoming more prevalent. There are also financial consequences for families up and down the country, with job loss being a reality. I outlined the figures which are staggering. Any condition in respect of which 48% of sufferers have reported that they have either had to leave a job or lost a job needs our urgent attention. We need to look at the financial implications and how we can support such families.
I thank the Senator. I take on board his point that a national strategy is needed. With regard to other illnesses and disabilities concerning my portfolio, five or six years ago the Government did not opt for a strategy but now "strategy" is the buzzword. I will bring the Senator's message back to the Minister and HSE.
The bottom line is that the Senator made valid arguments, one being that 49% of those with Crohn's disease lose their job. These are serious issues that have to be dealt with. I will bring back to the Government the simple proposal the Senator put on the table today. We currently have 12 nurses and need 28. From an economic point of view, in addition to a medical point of view, there are practical benefits to taking the pressure off the accident and emergency units by having the 28 nurses in place. Less than 48% of hospitals are not able to cater for those affected and do not have the nurses.
The Senator's points and proposals were very constructive and I will bring them back to the Minister and use them in negotiations with the HSE.