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JOINT COMMITTEE ON HEALTH AND CHILDREN debate -
Thursday, 4 Mar 2004

Diabetes Federation of Ireland: Presentation.

I welcome Professor John Nolan, Dr. Liam Plant, Dr. Anna Clarke, Ms Theresa Loughnane and Ms Cáitríona Coleman from the Diabetes Federation of Ireland. I will call on Professor Nolan to commence the presentation on the need for a national diabetes strategy but, first, I draw witnesses' attention to the fact that members of the committee have absolute privilege, but that same privilege does not apply to witnesses appearing before it. I remind members of the long-standing parliamentary practice to the effect that members should not comment on, criticise or make charges against a person outside the House or an official by name in such a way as to make him or her identifiable. I ask Professor Nolan to begin.

I convey our apologies on behalf of Dr. Chris Thompson, who is not able to be here this morning because of pressure of work. He sends his apologies to the committee.

We are delighted to be here and thank the committee for giving us the opportunity to come and talk about diabetes. We regard this as a valuable opportunity for ourselves and for diabetes patients to put our case to the committee. If I understand the format, I will make a brief opening summary of our position, but the majority of the time will be taken up with questions from the committee members. I gave an outline of what I intended to cover in my summary but I do not know if members received it. Members also have a longer document which is fully referenced.

I propose to summarise the situation regarding diabetes, which is a major and growing chronic public health problem in this country and many others. I will give a non-medical summary of the clinical forms, since diabetes is not one single disease. I will refer to the epidemiology of the condition, which is one of the reasons that we are here. The incidence of diabetes is increasing rapidly and it is an important matter. I will also refer to the situation around the world and in Ireland. Obesity is very closely twinned to the problem of type 2 diabetes. In essence, from the medical standpoint, diabetes is cardiovascular disease, which I will explain briefly later. I will also make a brief reference to screening for diabetes, which is becoming an important issue.

I will concentrate on the approaches to diabetes care, which is the reason we are before this committee. We have a choice between well care, which is preventive medicine anticipating problems and keeping people at work, or reactive care, which is based on complications. Unfortunately, in this country, we have high cost reactive care dealing with the complications of diabetes.

I will give an overview of how this could be changed and how we could move forward in that regard. I will refer to the current standards of care and the deficits. A much larger document which shows, region by region, what we perceive to be the deficits in care and the major deficits in equity of access and so on has been given to the committee. I will comment on the national strategy document of the Diabetes Federation of Ireland, which sets out the priorities.

This is not a medical talk, which I am more used to giving, and, therefore, I will have to be careful. Diabetes has become a story and is in the newspapers every day. It has been a rather neglected condition because it is silent. There are many people in the community with diabetes. It is estimated that 6% of the Irish population has diabetes, the majority having type 2 diabetes. Type 2 diabetes is the common epidemic form of diabetes and is linked generally to obesity, poor diet, inactivity and particularly to disorders of cholesterol, high blood pressure and an epidemic of cardiovascular disease. Type 2 diabetes is at the top of the agenda. Some 90% of patients have type 2, which is undergoing an increase of epidemic proportions. The other most common form of diabetes is type 1, which affects 10% of patients.

Type 1 diabetes generally occurs early in life. It is insulin dependent and requires insulin injections for survival. Type 1 diabetes is increasing throughout the world; in Europe and in Ireland there is data showing an approximate doubling since the 1980s. We do not know why, but it may have something to do with obesity as well. Types 1 and 2 are the main forms of diabetes, but there are many other clinical forms. Diabetes can be caused by drug therapies for other diseases, cystic fibrosis, etc. However, type 2 will overwhelm the health service unless we do something about it.

Every time medical professionals come before public representatives, every disease is epidemic. However, I do not want to apologise for the diabetes statistics because they are real, counted numbers and there is super data from the World Health Organisation, the Centre for Disease Control in the US and from Europe. In approximate terms, type 2 diabetes is doubling per decade. We anticipate that the number with diabetes in 2000 will double by 2010. I know members are aware of these statistics and that the chief medical officers have given the statistics to the committee. What I worry about is that the European data states that 22 million people had type 2 diabetes at the beginning of the decade, but the number will be 32 million at end of the decade.

The more recent epidemiological data from Europe suggests this is an under estimate. My contention is that Ireland is more extreme than our neighbouring countries for reasons we poorly understand. The trend that is driving type 2 diabetes is more severe and more acute in Ireland. We do not have good national chronic disease data for diabetes as yet in Ireland, but we have much small data and we have the data from other countries that have looked at Ireland. Recently published European statistics on childhood obesity ranked Ireland in the top three countries with Greece and Portugal. This really surprised me as Greece and Portugal have nice Mediterranean food. In the past week I have spoken to leaders in both those countries about the diet and what they told me is what we are seeing here in terms of fast food and no exercise is driving the epidemic.

Ireland is ranked ahead of Northern Ireland, Scotland, the United Kingdom, France, Germany and Belgium and all of these countries regard this issue as a crisis. The incidence of diabetes is increasing and currently there are major deficits in the delivery of diabetes care to people who are known and identified with diabetes. If we consider that the epidemic is real and that the projections are based on fact, what level of service will be available ten years from now? I shudder to think about it. We are in crisis even in the well endowed centres in the cities.

As the issue is in the public domain and is covered by the newspapers, most people in Ireland are aware of the figures for Ireland. Good estimates suggest that approximately 300,000 people in Ireland have diabetes and this is well mirrored in other northern European studies. It is also accepted in the public domain that approximately a third of that number is undiagnosed. On the basis of very good international screening studies done elsewhere, including in Europe, that is a matter of fact. The level of pre-diabetes, which is the phase of glucose hyperglycaemia before diabetes, is even higher. If the figure is 300,000 people with diabetes, by extrapolation from other European studies, approximately 300,000 or 350,000 people may have pre-diabetes. I do not think we can deal with the level of pre-diabetes today. I do not think public representatives can come up with a plan to deal with that just yet, but we need to give it our attention.

Today we are focusing on people with diabetes and what we can do to deliver appropriate modern services to them. The problem of obesity in Ireland is greater than in neighbouring countries. That is surprising, but it is a fact. Ireland has changed from being a relatively healthy, lean, mean, fit machine 25 years ago to being one of the leaders in world obesity and definitely one of the leaders in European obesity.

In my introductory comment, I referred to diabetes as a cardiovascular disease. This is often missed and again recent statistics from Europe show that many patients in coronary care units have diabetes, in other words, patients with diabetes have four to five times the risk of having a heart attack or stroke. Interestingly, a recent European study from Scandinavia shows that if the people in the coronary care unit with diabetes are excluded, another 65% in the coronary care unit have newly diagnosed diabetes or pre-diabetes. In summary, roughly 75% to 80% of people in coronary care units have diabetes or pre-diabetes, which is often missed. We have a cardiovascular strategy motivated by the Government which did not have diabetes on the agenda, yet diabetes is the quintessential cardiovascular risk factor. We have many people in Ireland with diabetes who are therefore brewing up a cardiovascular time bomb for public health in the country. This is a matter of fact.

We need to screen for diabetes. I am suggesting that there may be 100,000 or more people in Ireland with undiagnosed diabetes. If our primary aim was to provide a screening programme for diabetes, we would immediately flood, swamp and drown the health service. I do not think that would be my priority, although it is definitely number three or four on the list.

One can view health care in two ways - sickness, hospitals, accident and emergency departments, waiting lists, the national treatment purchase fund and so on, or the provision of decent services and modern standards of care to the public that will allow them to avoid loss of work and time queuing in accident and emergency departments, undergoing cardiac surgery, suffering myocardial infarction and so on. Like many other countries, our health service, unfortunately, has been reactive, based on complications. This is particularly acute with regard to diabetes. Even the very speciality of diabetology, in which I am trained, was built around diabetic foot disease, renal dialysis, eye complications, cardiac surgery and orthopaedic surgeons specialising in shoes. This is not what diabetes care should be about. It should be about keeping people healthy, working in the community, paying taxes, looking after their families and avoiding highly preventable complications. However, it will take investment if we are to have good care that is out-patient, multi-disclipinary and team based and preventative. We know this is the case and the document we have presented today puts a price on it.

It will take significant investment by the Government of approximately €55 million to €60 million immediately, as well as a capital cost upfront. This is a large amount of money but the committee should know that the cost of diabetes complications is enormous. This has been studied by us and others in Ireland. The total bill depends on what multiplier one uses but we are spending approximately €500 million per annum dealing with the complications of diabetes. These complications include heart attacks, strokes and their consequences, blindness, kidney failure and amputations. This is a reactive system, based on inpatient care. It is fragmented because the different complication disciplines find it difficult to talk to each other and, consequently, they are swamped. The system is more expensive but this is all preventable. There is a wealth of evidence in the public and medical domains that these situations are preventable. Type 2 diabetes is preventable by a healthy lifestyle.

Current standards are tremendously inequitable around Ireland with a lack of access to diabetes services in many areas. Let me give one example. A child diagnosed with type 1 diabetes has great difficulty getting access to any diabetes care outside Dublin, where there are three clinics properly staffed, and Cork, where there is a part-time service. This is an absolute scandal, which is medically indefensible and may be legally indefensible in the future. There must be some type of nationwide, community based strategy and we are proposing one today.

This would integrate the services of general practice with hospital secondary care and specialist care and with the complications services where they are required. A very good and uniquely democratic national strategy has already been produced. The document is available and has been in the public domain for two years. Unfortunately, very little progress on the strategy has been made since it was delivered. We can make progress on this with the help of the committee. With the engagement of the Department of Health and Children, we can make progress and we are absolutely committed to working with our public representatives to prioritise it. It is a blueprint for a modernisation of diabetes services and, ultimately it will save money. However, experience abroad suggests that it will take between five and ten years to deliver on that saving. If the committee supports us we can deliver this strategy and deliver decent quality care to diabetes patients in Ireland.

That was a very compelling presentation. Will Professor Nolan elaborate on two issues? The first is the cardiovascular strategy and how it contained nothing on diabetes, while the second issue is the federation's plan of action. I assume representatives of the federation met the Minister and his officials. At what stage is the plan with regard to funding?

The Chairman is probably aware that we recently had a first meeting of a joint working group with the Department of Health and Children. This group met the Minister last autumn. There is the beginning of a structure with which we can work with the Department. I am optimistic that it will be a good vehicle for progress, but we have just started.

It is very unfortunate that diabetes was left out of the cardiovascular strategy. It was a simple omission. I am afraid that diabetes will become the Cinderella of the cardiovascular strategy, but diabetes needs to be top of the list. Some of the structures put in place to aid the cardiovascular strategy, such as the heart watch programme and other programmes, do not have the resources to deal with the size of the diabetes problem. However, the concept of a preventative approach, a screening approach and a general practice based approach is the vehicle. However, I am conscious of the resources that are needed.

I thank Professor Nolan for his presentation. It is very necessary for the health committee to know the facts about diabetes. As the professor stated, it has become front page news recently, yet it has been a problem for a very long time. It is the big challenge of public health policy for the future. I want to focus on two issues. The professor seems convinced that obesity in children, which predisposes them to diabetes, is a diet related issue. A study in Britain showed that adults are eating less calories than they did 20 or 30 years ago. The conclusion was that obesity was related to lack of exercise. Do we really know if it is diet related or is it both?

I appreciate that the professor is very concerned about dealing with the patients he knows have diabetes and it is very important to treat those who have it. It seems to me that prevention is the way to go; otherwise, it is a case of sticking a finger in the dyke and trying to hold back the tide. We should worry about prevention but for the moment the professor has to worry about treatment. With regard to prevention, is there a potential in screening target groups? How would one go about it? What is the professor's thinking on that idea in a broad sense?

All those questions are very relevant. It is established that screening works and the best way to do that is in high risk groups which are very well identified. People over the age of 40 are at increased risk of type 2 diabetes. That represents many people. Anyone who has a first degree relative with diabetes should be screened because it is strongly familial. Anyone who already has complications should be screened because very often the heart attack comes first. Therefore, a younger person who has a heart attack or some other unusual cardiovascular problem should be screened. Women who have had pregnancy induced diabetes are at a higher risk, so there are well identified groups. Therefore, we need to introduce screening. There is a concept with regard to cardiovascular strategy that screening should be done in primary care.

With regard to children, I stated that both diet and exercise are important. If one looks at the information on diet now in comparison to 1950, the calories may be the same but the mixture has definitely changed. The fuel is different and anyone who has children will see what they get up to. The diet is high in fat and contains readily available carbohydrate and salt. It is low in those things that are good for children. The composition of the diet has changed substantially. However, it is correct that people should exercise because people, including children, are becoming less active. We have studied children with type 2 diabetes at St. James's Hospital and have carried out much work in this area over the past five years. The children are much more obese and less active than their parents. The problem is both diet and exercise and we must address both.

Dr. Liam Plant

While I deal with the end result of many other complications, in part the committee is asking whether we can deliver what we promise and whether there is sufficient evidence in that regard. I accept that everyone who comes here might promise the sun, moon and stars. To pick one example from the prospective diabetes study in the United Kingdom, which was based on population groups similar to those in Ireland, if newly diagnosed type 2 diabetics are followed up properly, it will be found that one particular complication, the development of small amounts of protein in their urine, will develop in one quarter of cases in ten years. This is the type of complication for which screening can be done. Once they get this, they are at a much higher risk of all the other complications such as blindness, kidney disease, etc. That is a big return for screening in that one is not screening thousands of people to find two but screening 100 to find 25 over ten years. A smaller proportion of such diabetics, some 5%, will go on to get heavier amounts of protein in their urine but most of those will not go on to get further complications as they will die of cardiovascular disease. There is a big return from screening.

In another EU state, Denmark, it has been demonstrated that if people with type 2 diabetes are exposed to a properly integrated multidisciplinary approach, over four years the proportion which go on to get kidney disease will be reduced by 60% and, over seven years, the proportion which will get eye or heart disease will be reduced by 60%. This data comes from the European Union and was published in the past two years. It is important the committee does not think we just want a chance and will see what we can do - this data shows the proportions.

I thank the delegation for coming before us. They tell a frightening story and I compliment the Diabetes Federation on its comprehensive report. I am concerned that much work goes into preparing strategies, plans and reports but, because cost is not evaluated, things do not happen. The fact that this report is costed is important.

In regard to the cardiovascular strategy, is it possible at this stage to introduce the issue of diabetes? Do we know what works in the context of the prevention of obesity? We have considered alcohol abuse and smoking as factors and a fair amount of work has been done to find out what works and what does not work. Has the same assessment been carried out internationally or in Ireland in regard to what works in combating obesity?

Is class an issue? It is interesting that the delegation stated that Ireland has such a high level of diabetes and obesity. There seems to be a particular difficulty with general health in unequal societies. Is that an issue here?

The delegation mentioned primary care and general practitioners. There is a current tendency when specialists come forward with proposals to have a greater emphasis on general practice. How far does the delegation consider this will go in the context of diabetes? Must we consider resourcing general practice to a much greater degree in future? The delegation mentioned IT in passing. Why is that important?

On the cardiovascular strategy, if we are creative, and if our liaison group can work with the Department of Health and Children, we can bring diabetes into the strategy. I am concerned that while cardiac diabetes is more visible and diabetes is under the iceberg, it is diabetes which is producing the iceberg. Ireland still has a very high incidence of cardiovascular disease compared to neighbouring European countries and this is partly because of our diabetes problem. We can tackle this issue. It would not be too difficult in terms of structural and administrative planning to do that creatively and it is something we must do, rather than reinventing the strategy.

The Deputy rightly asked what works in regard to obesity. The truth is that we do not know. While it is a matter of study, the rate of recent change in regard to obesity has been so dramatic that nobody knows, which is true for the United States, Japan, Europe and Ireland. We know it has much to do with diet, physical activity and lifestyles, which are very difficult to change. It also has much to do with what happens in childhood and there has been much research in this area regarding the earliest forms of predisposition to obesity. The solution to the problem is concerned with encouraging and educating families, parents and children and with the type of food eaten and advertised on television. However, we do not know why all populations are becoming so obese.

The Deputy mentioned class, which is a complicated question and one for which there is no simple answer. Diabetes does not select any class, creed or colour but occurs across all social classes. However, the question is whether the trends driving this "globesity" or "diabesity" are different. There is some evidence from the Irish national health and lifestyle study, SLÁN, that some of the most adverse findings for young people are for those from lower social classes, which is a worry. However, the situation is complicated because diabetes crosses all thresholds.

Primary care is very important. Although Dr. Plant and I are specialists, this group and its report represents a coalescence of the views of all involved in diabetes care. As the committee will know, primary care was very much involved in the genesis of the report we bring before it today. We will not succeed in managing this disease unless there is a completely integrated programme involving hospitals and primary care. Some ongoing models have network systems with hub hospital spokes and a network of GPs, including two in pilot form in Dublin - at our centre in St. James's Hospital and at Beaumont Hospital. These provide a good model. This is not new and has been developed in other countries, where it is possible to integrate patient care seamlessly from GP to hospital when required, which is very important. I was asked whether investment was required. It is and has been costed in the document before the committee - the figure for the initial investment in primary care can be provided if required.

This is our vision. Diabetes is a chronic disease and, like many others, it has to be managed in that fashion. It is not a hospital disease. I hope it will not always be a complications disease. As a diabetes specialist, I would prefer to have every patient as an out-patient as I do not really want to have them in hospital beds, although I would ask the committee not to record that. However, 15% of beds are occupied by diabetes patients.

Information technology is critical and must be discussed. In my experience, the smaller the country, the worse the IT. There is a certain parochialism and Tower of Babel attitude which dictates that different groups of health professionals and different hospitals have their own independent IT systems. This is supposed to be an information society but we are in the 19th century in this regard. However, we can improve this aspect. It would not take much.

I raised this matter directly with the Minister for Health and Children in September and I said to him: "If we do one thing, why do we not create a decent, simple IT structure?" It would contain patient demographics, date of diagnosis, current prescriptions and a simple cluster of laboratories. That is not pie in the sky. We have a programme, which is funded by the Information Society, in St. James's Hospital and Tallaght Hospital. We have created the same IT system on both sites. It took plenty of discussion to get us to agree, but we did so. The IT systems on both sites can communicate with each other and all the GPs in that network are networked to the same system. Unfortunately, the funding for networking hospitals to each other has been put on hold and the funding for networking hospitals with general practices is still on hold, but that is a vision of what we could do.

Ireland is a small country - it is like one large family - so in this day and age we should be able to design something like what I described. It probably would be Internet based and would be able to be consulted by every patient with diabetes, every GP and everybody else who is involved. That is what we need and what we are seeking. If we do not have an IT system, how can we come back to the committee and say what money we have spent and how much we have saved? If we do not have an IT system, how can I answer questions about how many children in County Kerry have diabetes? If we do not have an IT system, how can we do anything? We are not asking for a bells and whistles, rocket science type of IT system but something that is probably one page on the Internet. I am glad the Deputy raised the point.

I know that Ms Theresa Loughnane would love to comment because she is a dietician.

Ms Theresa Loughnane

As Professor Nolan said, the causes of obesity are multifactorial, but one or two of the Scandinavian countries - in particular, Finland - have done some good studies and are doing some good continuing work on the prevention of the progression to diabetes of impaired glucose tolerance, which is the pre-diabetes stage that Professor Nolan mentioned. Intensive diet and exercise programmes have shown very good results in helping to halt or slow the progression from the pre-diabetes stage to full-blown diabetes.

On the question of social class, some studies have examined health and lifestyle in the Irish population. The most recent was the SLÁN study of 2003. Those studies showed that, although the population's fruit and vegetable intake is increasing, the lowest intake was still in the lower classes. The Deputy therefore is correct that diet is worst in the lower social classes. When the studies examined obesity levels, they also found that the more obese were in the lower social classes and lower educated groups.

I welcome the delegation, some of the members of which have travelled a long distance. We are all agreed that prevention is better than treatment. The witnesses stated that obesity has a leading role to play in causing type 2 diabetes in particular. The Minister and the Chairman have made moves to try to highlight the role of obesity and how it might be counteracted, but can the witnesses give us any practical ideas as to how we can get the message out to the public? We all know that obesity is a problem, but how do we get the message out in a way that the public will receive? Should we be more authoritarian in our message or should we ask the public to do certain things because they are good for their health?

I am also interested in screening and the role of the family doctor or practice nurse. Do the witnesses have any indication of what it might cost to involve every practice throughout the nation in screening?

The witnesses raised paediatric and type 1 diabetes and the lack of facilities outside Dublin and Cork. Are they saying that places such as Galway, Sligo, Letterkenny and Tralee do not have the facilities to treat paediatric and type 1 diabetes or that they would prefer to have diabetes specialists in all those areas?

I accept that we do not have a handle on the number of diabetes sufferers in Ireland. The North Western Health Board is the one that I know best and it was my understanding that the IT systems of the family doctors and hospitals there were compatible. Do the witnesses know whether figures for the number of potential and real diabetics are available from that area?

I welcome the delegation and thank the members for their presentation. Some weeks ago, I attended the Diabetes Foundation's AGM in Limerick and was impressed with the information given at that meeting, which was attended by between 300 and 400 people. I ask the witnesses to develop statements that were made at the AGM. It was stated that 10% of the health budget goes to diabetes, but that only 15% or 16% of that is spent on prevention with the majority of the expenditure on dealing with diabetes after the event, rather than preventing it. Are those percentages correct? Much emphasis was placed on the need for the budget to be applied to preventing diabetes rather than dealing with it after it developed.

I must declare an interest - I am president of the Diabetes Federation of Ireland and I am proud to be so.

The situation is terrible. It is frightening. I have noticed that foot clinics are needed desperately in every health board area because 20% of admissions are due to complications such as foot ulcers, which can lead to amputations. Such clinics are not the most expensive things in the world to set up.

I sometimes wish that, when witnesses come to the committee, they would ask us to push elements of strategies rather than whole strategies because it is sometimes possible to get something done that way. What do the witnesses think of that point? As a patient, what does Ms Coleman think is the most important service for which we could ask?

I thank Deputy Devins for his questions. His first question was about prevention and how we get the message across on obesity. That is extremely difficult and we do not have the answer. It is an education, public health and public information issue and has much to do with what goes on in schools. Prevention work is beginning to happen in Ireland. There is much more public awareness and even a public hearing such as this committee meeting helps. It is not simple, but I agree that it is important.

I am aware of the value of education, but is it working? Should we be more prescriptive? Should we, for example, introduce a so-called fat tax?

There are models in other diseases, but with diabetes and obesity, the problem is that it is impossible to be prescriptive. A fat tax is more or less unenforceable if it is a negative approach to a problem that can be solved in a positive, educational way. The experience in other jurisdictions is that a fat tax would be extremely difficult to operate. It also sends a negative message and some form of positive healthy living, healthy eating and healthy exercising approach is likely to be much more successful.

On screening, we talked earlier about high risk groups and other groups that could be screened. The Deputy's suggestion that screening could be carried out in every general practice in the country is the right model. However, I cannot cost that and I am not sure whether it has been costed. Given his question, I guess the Deputy knows what would be involved.

The best way to screen properly for diabetes is to do fasting bloods. These are not very expensive. It takes ten minutes to carry out a fasting glucose test, with a lipid profile thrown in, a blood pressure measure and a weight measure. That is the way to go. If one multiplies this by the groups to which we referred earlier, one will arrive at a finite cost. I am informed that a primary care costing amounts to €10 million.

Ms Anna Clarke

Primary care is included in the original document, in which we were seeking €70 million. Primary care was allocated €10 million of that for the training up of GPs and the capital expenditure needed for their IT systems. It did not include the community-based support they would need. That was included as part of the breakdowns for each of the health boards. The figure for investment in primary care was estimated at €10 million to ensure that this level of diabetes care would be available.

Is that care or is it——

Ms Clarke

It is care. However, obviously if one has a GP who is interested in diabetes care, he will screen all his high risk patients as a matter of course because he will be aware that this is preventative.

Diabetes screening is not expensive. If one is screening for lung cancer, with low dose CAT scans, etc, one is talking about many multiples of the cost. The problem with diabetes is that it is too cheap at times. There is an attitude that it is just a touch of diabetes and that the person with it should not worry, should eat more healthy food and should take more exercise.

Just a touch of diabetes?

This is the problem. Denial is one of the great mechanisms employed by Irish people. We do not like to be screened for anything. I include myself in that. There would be a finite cost but it would be very affordable and we should give consideration to it.

Paediatric diabetes is extremely important. I made a strong statement about that. I was asked if children in other cities and towns are being hard done by. The answer is "Yes". By international standards - these are minimum standards of care - a child with diabetes, usually type 1, should see a specialist paediatrician with an interest in diabetes. They should see either a paediatric endocrinologist or a paediatrician with special training in the area. It has been international practice for many years that such a child should also see a specialist dietician with paediatric experience. Paediatric medicine is so different to adult medicine.

Psychologists are also needed but we do not have any, even for adults. That multidisciplinary approach to the child has been the basis of international standard care for at least 25 years. Unfortunately, Ireland is extremely under-resourced in this area, which is a major source of anger for us. In my opinion, this matter, and much of what we are discussing, will be the subject of a tribunal in the future. Members are aware of the layout of the services as they currently stand.

There are services in the other towns mentioned and other paediatricians try to help. Primary care doctors or general practitioners do a fantastic job, but it is not enough. I will ask Ms Coleman to answer the question about the North Western Health Board and the IT structures that have been developed, numbers, etc.

Ms Cáitríona Coleman

We are about to embark on putting in place an IT structure to provide a diabetes management system whereby we would also have a diabetes register. This would be initiated through lists we will request from GPs, which will also link up with the diabetic eye screening programme that will be established shortly. Lists of patients for referral for the eye screening programme will form the basis of our register. The programme will be rolled out initially for eye screening and it will then be rolled out in hospital clinics. It will eventually link into the practices of GPs, who will be able to access it through an intranet system. It is extremely costly. Some of the funding for this programme has come through cardiovascular strategy funding because it was recognised in the North Western Health Board's use of its cardiovascular funding that diabetes played a major role. We have been able to use some funds in that way.

I am afraid that I cannot provide any information on numbers for Deputy Devins.

Ms Coleman

However, that is how it is envisaged it will be rolled out.

Ms Coleman was asked how she felt as a patient. Perhaps she would address that matter.

Ms Coleman

Certainly. Deputy Olivia Mitchell alluded to pregnancy. Diabetes is somewhat like having a baby but this baby never grows up, never leaves and, unfortunately, one cannot engage a babysitter to look after it.

I would like to see equitable access to services. Diabetes care is expensive and time consuming. Ideally, one should be accessing the service every three to six months so that it can work in a preventative way. We are trying to look after ourselves so that we can prevent the advent of problems. The only way to do this is to plan for the future so that one is always on top of matters. However, it takes a great deal of time and effort. Some people find it easy, while others find it extremely difficult. People who have access to and are covered under the GMS find clinics have long waiting lists and there is a great deal of time investment on the part of the patient. There are eye screening clinics and general diabetes clinics and, if one is lucky, one can access chiropody services. A great deal of time must be invested. If one does not have access to a medical card, one must pay one's GP to have blood tests carried out or to have a general medical check-up on a regular basis. That is extremely expensive.

I was informed by a consultant that, between the time of diagnosis to the point of meeting a consultant, there is a waiting time of two years. Is that correct?

Ms Coleman

That is correct.

Ms Coleman referred to eye screening. Is that a pilot project?

Ms Coleman

Yes.

How is it operating and what is the target group? Does the latter comprise people who have already been diagnosed?

Ms Coleman

The target group will comprise everybody with diabetes over the age of 12 who will benefit from the screening. Obviously, those with a terminal illness will not benefit from eye treatment or eye screening. Screening will also be carried out on an annual basis to try to detect early retinopathy so that patients can access treatment at an earlier stage rather than trying to treat sight-threatening retinopathy.

Has it started?

Ms Coleman

We hope to roll it out before the end of the year.

Foot clinics are important. This brings us back to complications and where we spend the money. In simple terms, diabetes causes foot disease and if one has diabetes of any kind, the risk of having one's leg amputated is increased 50 to 80-fold. This is because diabetes causes cardiovascular disease and also loss of sensation in people's legs. If a person with diabetes develops a small foot ulcer, that is a predictor of cardiovascular death. This is the important message. Even as a medical student I did not understand what is involved, but I do now. The first foot ulcer is a predictor of early death from heart attack or stroke. It is also a predictor of an approximate ten to 20-fold increase in expenditure. It is a shocking experience for a man of 45 years of age to enter my clinic with a small foot ulcer and be informed by me that he needs to be admitted to hospital, even though we have no beds, and that he may not be able to work for two months or that he may not be able to return to the particular job in which he is employed. Foot care for diabetics is very expensive.

What is the evidence? If there is proper foot care - podiatry and chiropody - diabetes care, nurse care, access through the community and hospitals, amputation, loss of limb, loss or life and loss of job can be prevented. However, this takes money.

I have never done so in public before but I will briefly outline the experiences in St. James's Hospital. In one year in St. James's we looked at all foot admissions for diabetes. There were only 30, which is not too bad for a big population. The estimated cost of their care, non-inclusive of labs and some of the inpatient treatments for which we could not find a cost, was €750,000. The cost of having a full-time podiatrist would be approximately €60,000, with all the bells and whistles, but we cannot get one. We do not have a podiatrist. Many diabetes patients in Ireland, as Ms Coleman rightly said, never see a podiatrist, or they see a podiatrist who has no training in diabetes. Foot clinics, as was alluded to, are important and in the ideal setting they are multidisciplinary with a vascular surgeon and an orthopaedic surgeon or someone who specialises in orthotics. They cost a little upfront but they save money. We have estimated in our document that we need approximately 70 podiatrists nationwide to address that problem. That is part of the answer.

Deputy Neville referred to the estimation that 10% of the health budget is being spent on diabetes. This is a fairly well accepted statistic. There have been European studies of which we have been part but the actual number per country varies a little with the multiplier, depending on where one thinks one's prevalence is right now. That has not been accurately assessed here, but it is about 10%. Deputy Neville also alluded to the fact that only a small proportion of that is spent on prevention. That is true and it is not good. The other side of the coin is that the majority of the money is spent on complications. It is not spent on the type of care Ms Coleman spoke about. It is not spent on out-patient care for the working man or woman or the child who is doing the leaving certificate or on streamlined care between general practice and specialists for people who are well. It is spent on the type of things I am talking about, such as vascular surgeons, laser treatment for eyes and the involvement of the dialysis unit. Maybe Dr. Plant will mention the cost in that regard because it is very high. We are dealing with late life complications - too little too late - which are so expensive. That is the message.

Deputy Neville is correct. We should spend more on prevention. However, at present we have a crisis regarding resources for the patients we have. Senator Henry mentioned waiting times to see a consultant. It has been said in the media that there are waiting lists of 12 to 18 months to see a consultant. This is not because the consultants are not doing their work, have conflicting interests, are in private practice, playing golf or doing something else. I came to St. James's Hospital in 1996 from America, where I thought I had worked hard. In my first year I nearly died. We saw 250 new patients in the year. I said, "This is an epidemic. We need nurses. Where is the podiatrist?" I was on a campaign. In the last year we saw 1,000 new patients. This is not because we have a fancy, super place with parking, psychologists and more podiatrists. There is one parking space. It is not fancy. We are in an old building, which is good, and we have the best nurses. We have fantastic professionals in diabetes in this country - I really mean that, I am not grandstanding. The team that produced this document is good. We have everything we need but we need more. If a patient wants to see a consultant, he or she should see one. We need more consultants, pure and simple.

The dispute is in the public domain. There are problems about how to restructure. We simply need manpower. That is one of the problems. We are committed to working with the Government to do this right. Did I leave out a question?

No, you did exceptionally well. Senator Henry said she thought foot care was very important. You will not get €70 million in one go, but where would your funding priorities lie?

That is a very good question. We have begun to look at the question in that way in our first meeting with the chief medical officer and with our liaison group. We do not expect this to be done overnight.

The IT question can be solved very quickly but we need Government involvement. If we have piecemeal IT we will still have problems five years from now. We need the involvement of the Government and the Department of Health and Children. We need to work with this committee in that regard. Information technology is relatively cheap. Efforts like the retina screening programme, which is being piloted in different places, is also relatively easy. It is well costed and is not too expensive. I agree that foot care is relatively easy to improve. We need the podiatrists but there has been an historical problem about certification and qualification of podiatrists. We also need the help of the Minister for Health and Children and this committee to resolve that issue. It is a complicated story.

There are real geographical inequities in terms of access. We need community or regionally based diabetes teams or units throughout the country. There are black spots. There are areas which are worse off than others. If we were starting off, we would start in those areas which have the greatest deficit. Even the north west, which has done fantastic work and is developing in the direction we are proposing, needs diabetologists in Sligo and Letterkenny.

Where are the black spots?

I will ask Ms Clarke to deal with that question. The Diabetes Federation of Ireland is better on that aspect.

Ms Clarke

There are different areas. Paediatrics is a particular area of mine and is one I closely monitor. The Chairman asked earlier about paediatrics in Sligo, Galway and Mayo. Children are looked after in those areas but not by a diabetes nurse specialist with qualifications in family development. The family is involved. When a child has diabetes it is a whole family matter. The big issue with regard to children at present is in the Mid-Western Health Board area. A newly diagnosed child in that health board area cannot even get to see the specialist who has an interest in diabetes there. He or she is looked after by the paediatrician who is on call the day he or she is diagnosed. Any care he or she gets from the diabetes team is on a goodwill basis. There is not a formal structure.

Could Ms Clarke explain that again?

Ms Clarke

A child diagnosed in the Limerick-Clare area is admitted to hospital under the paediatrician who is on call. There is a paediatrician with an interest in diabetes but, due to lack of resources, he cannot take on any more patients. Therefore, the child and his or her family are cared for by an ordinary general team. They do their best.

Does that continue throughout the system? They do not transfer over to the specialist with an interest in diabetes?

Ms Clarke

Not at present. There is no way for them to transfer over.

My goodness.

Ms Clarke

They stay under that paediatrician. If they get to see a diabetes nurse specialist it will be an adult diabetes nurse specialist who is not trained in family development. Despite the fact that there are two nurses working there who are qualified as paediatric diabetes nurse specialists they cannot be employed. There is a real inequity of service there.

Likewise, throughout the country, any person with type 2 diabetes has issues in terms of getting into the adult services. Many clinics are only held once a month and a person can access the diabetes team only by ringing in, leaving a message on a voicemail and hoping the call will be returned. There are difficulties with that in many areas. The Diabetes Federation of Ireland receives many calls from people who cannot access their own diabetes team and are concerned about something. They ring us looking for medical assistance which, obviously, we cannot provide. All we can do is get them to try to make contact with their own diabetes teams or, failing that, to go to their general practitioner.

Is diabetes not a lifestyle problem? Professor Nolan mentioned that he saw 250 new patients in his first year in St. James's and is now seeing 1,000 new patients per year. This disease is at epidemic proportions. Much of the problem arises from people's lifestyle, what they eat and how much they eat. Surely we should be putting much more money into prevention and education. I am speaking about education of the public, general practitioners and paramedics.

I would hate members to go away thinking that I said the diabetes problem is essentially a lifestyle problem. I did not say that. We have a huge increase in the level of diabetes and among the risk factors for type 2 diabetes are many lifestyle factors. However, we do not understand them fully. It would be dangerous for us to say to our patients that diabetes is mainly their fault. It is a complex issue, something we fail to understand. Many of the issues surrounding the genesis of diabetes are the subject of major research. While obesity and genetics play a role in it, there are many things we still do not understand.

I agree we should be doing something to halt the flow and we are committed to doing so. The matter has been well discussed today. However, patients continue to present with a disease for which we must cater. The treatment of diabetes, like many other diseases, includes lifestyle changes but it also includes medication, cardiovascular drugs and so on. I take on board the points made but I would not like members to think this is simply caused by people's laziness and lack of health awareness. That is not the case.

We thank the delegation for attending. This has been an informative, cogent and, in many ways, chilling meeting. We are satisfied of the need for emphasis on the implementation of the strategy. We will move the issue forward from here. I regret we did not hear from this delegation before hearing from officials of the Department of Health and Children. We would have had a great deal more to say to them if that had been the case. We will inform the Minister of our meeting today when he comes before the committee. I thank the delegation.

The joint committee adjourned at 10.55 a.m. until 9.30 a.m. on Thursday 1 April 2004.
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