JOINT COMMITTEE ON HEALTH AND CHILDREN debate -
Tuesday, 17 Jun 2008

Diabetes and Obesity: Discussion.

Chairman

I welcome Dr. Diarmuid Smith, consultant endocrinologist from Beaumont Private Clinic, Dr. Obada Yousif, consultant endocrinologist from Wexford General Hospital, Dr. Colm Costigan, consultant paediatrician at Our Lady's Hospital for Sick Children in Crumlin, Dr. Tony O'Sullivan, representing the Diabetes Federation of Ireland, Ms Jenny Clarke, a diabetes nurse specialist at the Mater Hospital, Dublin, and Ms Caitriona Connolly, senior diabetes dietitian at the Mater Hospital.

Before beginning, I draw the attention of witnesses to the fact that the members of the committee have absolute privilege but, unfortunately, the same privilege does not apply to them. Members are reminded of the long-standing parliamentary practice to the effect that members should not comment on, criticise or make charges against a person outside the Houses, or an official, by name, or in such a way as to make him or her identifiable. Members may ask questions after this briefing. I invite Dr. Smith to make the first contribution.

Dr. Diarmuid Smith

Thank you, Chairman. I thank the committee for the invitation to address it. This is the third consecutive year that the Irish Endocrine Society and the Diabetes Federation of Ireland have made a presentation to the Oireachtas Joint Committee on Health and Children. We thank the committee for its interest and for the opportunity to make this presentation.

We would like to be able to say that over the past three years the care of diabetes patients in Ireland has improved but, unfortunately, it has not. The title of our presentation is: Diabetes in Ireland: Are We Coping? The stark reality is we are not coping, which significantly affects the quality of care we can deliver to patients with diabetes in this country. The greatest health challenge the world and Ireland face this century is the epidemic of diabetes. The prevalence of both type 1 and type 2 diabetes is increasing each decade. In the case of type 2 diabetes, we expect to see an increase in its prevalence of approximately 37% over the next ten years.

We know that if diabetes is not treated appropriately, life expectancy is shortened. We know that diabetes is the commonest cause of blindness in working age adults. We know that diabetes is the commonest cause of renal failure and we also know of the need for dialysis in Ireland. Diabetes is associated with a 40-fold increased risk of lower limb amputation and an increased risk of heart disease and stroke. Diabetes care consumes between at least 6% and 8% of the annual health care budget and 60% of that budget is spent on the management of diabetes-related complications. Several diabetes complications are preventable, so if we invest appropriately in diabetes care, we can stop limbs being amputated and people going blind and save the health service money.

In 1989, the Department of Health and Children signed up to the St. Vincent declaration. With this declaration, the Irish Government made a commitment to reduce new blindness cases due to diabetes by one third or more, reduce numbers entering end-stage diabetic renal failure by at least one third, reduce by at least 50% the rate of limb amputations for diabetic foot disease and reduce morbidity and the mortality rate from cardiovascular disease. Unfortunately, successive Irish Governments have failed to deliver on these commitments.

In 2002, the diabetes community submitted a document entitled Diabetes Care: Securing the Future to the then Minister for Health and Children. This report outlined very precisely what Ireland needed in terms of staff numbers and infrastructure and provided precise costings on how to establish an internationally accepted national diabetes service for this country. The recommendations of this report have not been implemented and so today we are still providing a sub-optimal, understaffed and under-resourced national diabetes service.

In 2006, the HSE established an expert advisory group to look at the development and implementation of a national diabetes strategy. Several people here on our panel were included in this group and have given their time, energy, commitment and ideas to the HSE and the expert advisory group in the hope that a national diabetes strategy would be implemented. They submitted their recommendations to the HSE in September 2007. However, nine months later, none of the recommendations of the expert advisory group has been implemented.

In Ireland, the diabetes community is very clear about what we need to do, how we need to go about delivering a world-class diabetes service for the people of Ireland and how much this will cost the country. The only blockage appears to be a lack of political will in the past, possibly a lack of knowledge in regard to the seriousness of diabetes and, unfortunately, lack of resources. We are asking for the committee's help to have the vision and political willpower to realise that Ireland is facing an epidemic of diabetes. We need to put structures, resource and staff in place to deal with this national crisis.

The aim of our presentation today is to push forward the agenda of a national diabetes strategy and to highlight five urgent deficits that require immediate attention. The first deficit relates to diabetic eye disease or retinopathy. Diabetes is the commonest cause of blindness in working-age adults. Up to 5% to 10% of people with diabetes have sight-threatening eye disease which requires expert ophthalmic follow up and treatment. Diabetic eye disease is preventable. The establishment of a national retinal screening programme using retinal cameras and pictures would help us to identify diabetic eye disease early, allow appropriate therapy to be initiated early, reduce the number of new cases of diabetes-related blindness and improve our patients' quality of life. It would also be cost effective as it would pay for itself within a few short years. The cost of screening a patient with a retinal picture or camera is approximately €65, while the cost of treating someone with sight-threatening diabetic eye disease is more than €1,700.

A national retinal screening programme is the international best practice and has been effective in other countries of similar size to Ireland in reducing diabetes-related blindness. However, this programme is only available in small pockets of Ireland like the north west where it runs very successfully. In 2007, the HSE west was promised a capital expenditure of €750,000 to expand the retinopathy screening programme within the area. The money in 2007 never materialised. The area received similar funds in 2008 but is still awaiting clearance to recruit staff to run the retinal screening programme. We are asking for the committee's help with regard to the immediate expansion of the existing retinal screening programmes and in pushing for the development of a national retinal screening programme for Ireland.

Our second point relates to diabetic foot disease, particularly in respect of podiatry. Every 30 seconds, a limb is lost in the world due to diabetes. Patients with diabetes are up to 40 times more likely to have a lower limb amputation than someone who is not diabetic. Diabetic foot disease is preventable. Ireland has the lowest manpower in podiatry for diabetes. There are only two full-time hospital posts in the whole country. The country needs between 90 and 100 full-time podiatrists for diabetes foot care based both in the community and the hospital. The podiatrists need to be appropriately trained, equipped and resourced if they are to have a positive impact on reducing the risk of diabetic foot disease. Investing in podiatry care will help us save limbs and improve the quality of life of our patients and would be cost effective.

The third issue relates to a national diabetes register. I cannot say exactly how many people in Ireland have diabetes. We do not know. Nobody in Ireland knows so we are giving the committee an estimate. We estimate that 5% of the Irish population have diabetes but this is likely to be an underestimate. The prevalence of diabetes in Europe is close to 8%, while in the US, it is approximately 10%. I do not know whether diabetes is more prevalent in Mayo or Donegal compared with Dublin. We need to know this information so that we can plan service development for the future to deal appropriately with the epidemic of diabetes. A national diabetes register would be a simple, straightforward and achievable step which would significantly improve diabetes management across the country.

The fourth issue relates to integrated care. Integrated care refers to the care of patients predominantly with type 2 diabetes. It refers to the integration and sharing of care of all patients with type 2 diabetes between the hospital diabetes specialist team and the primary care physician who has an interest in diabetes. The system essentially is structured on an annual visit or a visit every 18 months to the hospital diabetes specialist team and three-monthly in-between visits to the primary care physician. Information, treatment protocols, treatment plans, education sessions, regular education and patient updates are then shared between the hospital and primary care practices to deliver the optimal level of care to the patient. This system is not operating on a national basis in Ireland, again, due to the following: a lack or absence of a specialist hospital diabetes service in parts of the country; lack of resources, support and capital investment in primary care in Ireland; and an absence of community dietitians and community diabetes nurse specialists who would play an integral part in linking the care between the hospital and community. Therefore, patients with type 2 diabetes are often only seen once a year for their diabetes or not at all and if they are seen more frequently, it is often in an unstructured fashion with little access to or support from the diabetes multidisciplinary team.

The diabetes community wants to develop a system of integrated care between the hospitals and primary care providers. We ask for the committee's help to ensure the recommendations of the expert advisory group are implemented and to promote the message of integrated care for patients with type 2 diabetes.

We call for the development and expansion of existing services. Unfortunately, in 2008 some hospitals do not have a consultant diabetologist or endocrinologist. The hospital diabetes multidisciplinary teams are understaffed, overstretched and frequently operate out of buildings or rooms which are completely inappropriate to their needs.

Diabetes care in the community is essentially non-existent. Paediatric diabetes care is under-resourced and must deal not only with type 1 diabetes but also with obesity and type 2 diabetes in young children. Unfortunately, there is either no or only limited access to psychological support for patients with diabetes.

A few weeks ago, in a kidney clinic I run with my colleague, Professor Peter Conlon, in Beaumont Hospital, I met a man from the country who had type 1 diabetes for 39 years. During those 39 years he had never met a diabetes or endocrine consultant. I was the first consultant diabetologist he had met. Unfortunately, at this stage he was almost blind, had laser therapy to both his eyes, had renal failure and was beginning the process for renal transplantation and had lost the sensation in his lower limbs. I could not believe this could still happen in the Ireland of the 21st century but I am afraid this story is not uncommon.

On behalf of the Irish Endocrine Society and the Diabetes Federation of Ireland I thank the Chairman for his kind invitation to make a presentation to the committee, and for his time and his interest in diabetes. We have a blueprint for a national diabetes strategy. The diabetes community is very clear on what we need to do to improve diabetes care throughout the country. We all know times are difficult and money is tight but this excuse should not apply to diabetes care. If we invest in diabetes care now, we will save money down the line, we will save lives and limbs and we will stop people going blind. We are asking for the committee's help to have the vision and the commitment to implement a national diabetes strategy.

Chairman

It would be helpful if Dr. Smith could circulate his paper. Prior to asking members for questions and comments, I invite Dr. Smith's colleagues to speak.

Dr. Colm Costigan

I am the chairperson of the expert advisory group on diabetes and can provide the committee with background information. The blueprint being discussed can be found in the first report of the diabetes expert advisory group which we submitted in late September last year.

I was involved in the 2002 report on diabetes and the difference between that and the report of the expert advisory group is that the expert advisory group is meant to be involved in the implementation of the process. Medical people involved in the field, such as nurses, general practitioners, ophthalmologists and others with an interest in diabetes, were invited to become part of this expert advisory group and the carrot at the end of the stick was that we would be involved in implementation. We decided to try one more time and revisit these areas.

I was ticking off the points raised by Dr. Smith. At our first meeting, five or six of those points came to the surface as priorities and we established subgroups to examine them. Our report consists of approximately six topics. Retinopathy, podiatry and paediatrics were top of the list as emergencies. We propose a new model of care with integrated general practice and secondary care. We make proposals for promoting education and integrating education for the family. We also propose standards of care.

These proposals were agreed and submitted in October. They went through the various processes in the HSE, which was a little frustrating at times. However, they got to the management top table and in April of this year we got endorsement from the management team for our proposals. The question now is one of implementation. As we go about implementation we are experiencing cutbacks with resource implications and a lack of whole-time equivalents. All types of excuses are being put forward.

If the committee could do one thing for us today it would be to add political pressure to implementing this report. We do not need new reports or fudging of the issues. Our document is similar to the committee's document and there is no disagreement. We have a chance of implementing it if it is supported. We have published practical guidelines on how care would be shared between primary and secondary levels. We visited the centre in Galway and will visit the centre in Cork next week.

We hope to establish local diabetes service advisory groups. These would be implementation groups for our document. We ask people to take the document as a blueprint, identify local needs and then apply locally for funding to fill out the resource requirements. Problems will arise when people are told there is no money and the service will peter out again unless a system is in place to implement the process. I call on the committee to get behind the blueprint and promote it as best it can.

Dr. Tony O’Sullivan

I wish to make a couple of broad points. Diabetes is the key chronic disease we must deal with in Ireland today. The reason I state this is because in public health we are moving away from concern about infectious disease towards chronic disease as the key health threat to our population. Among these diseases, diabetes must be the most common after cardiovascular disease, which to some extent has been dealt with by our health services.

Diabetes is inexorably progressive. One cannot see a person with diabetes once and then leave him or her alone. People must be reviewed on a very regular basis and unfortunately, as someone who has lived with type 1 diabetes for 30 years, I can state this is not happening.

Year after year, the Diabetes Federation of Ireland hears about people being followed up at two or three yearly intervals. These are the people within the system and are in addition to the many people living in rural areas who have stopped going to clinics because it did not seem to make sense to take time off work and travel great distances for very long waits. The consultants, doctors and nurses do not have time to see people. Life with diabetes in this country is fraught with risk and concern. It would be wrong to assume we are concerned only about the future. We are concerned now.

If I were to get depressed about my diabetes, which is the case with 10% of people, there is only one psychologist working in the area of diabetes. Compared with every other European country we have absolutely no resources to deal with this major complication. I urge the committee to see this as a priority.

Dr. Obada Yousif

Diabetes has been recognised by the United Nations as being the only non-communicable non-infectious disease that poses serious threats to communities and countries alike. If it did not require this status, it would not have gained it. The UN passed a resolution in December 2006 recognising diabetes as a major health threat of the 21st century, equating to AIDS in the 20th century.

I wish to reflect on the lack of adequate resources and funding, particularly in the countryside where I work. While I work in Wexford General Hospital primarily, there are significant funding inadequacies in all of the country, not just the south east. We work under extreme pressure, often with only one or two diabetes nurse specialists and limited resources. This goes against the ideas of equality and fairness promoted by the Department of Health and Children. There is no equal access to diabetes services. That there is a large waiting list adversely affects the quality of care being provided because one often rushes to see as many people as possible. There are no resources to cope with demand, the point of view from which we are coming.

I urge the committee to consider bringing the countryside's resources to an equal level with other areas and to implement my colleagues' recommendations for a central national registry. We all advocate it because it is important. We implemented a local registry using a local database and I could tell the committee exactly how many patients attend my clinic. I am sure that many of my colleagues would be able to do likewise. Unfortunately, there is no centralised link to determine how many patients there are in the whole of the country and their geographical distribution. We do not know how many patients experience complications, such as microvascular complications. In turn, this will have a considerable impact on budgeting for and implementing a proper national strategy.

Chairman

Would Ms Clarke or Ms Connolly like to add anything at this juncture?

Ms Caitriona Connolly

I wish to add to Dr. Yousif's comments on access to services. There is limited access to dietetic services at community and hospital levels. Just as important is having protected time for diabetes. Often, dieticians in the community work with general practitioner practices that do not specialise in diabetes. However, putting into practice integrated care services requires people who are appropriately trained and skilled in dealing with diabetic patients. Education and access to training for the dieticians is important. We must allow protected time to see patients, as it would provide equality of care and access to quality care, not just in specialised centres.

Ms Jenny Clarke

Community diabetes nurses are required. Currently, there are only three. Structured education for practice nurses, led by community diabetes nurses, is important.

Chairman

I thank our guests for their clear overview of the situation. Members can now ask questions and make comments, beginning with party spokespersons. Would Deputy Reilly like to start?

Deputy James Reilly

I would. I am leafing through the comprehensive submission. I thank our guests for attending. Diabetes is a significant societal issue and a major epidemic. The prevalence of diabetes is increasing on the back of an obesity epidemic. Were the right type of screening process put in place, diabetes would be detectable. According to our guests, a considerable amount of money would not be necessary.

I wish to ask a few questions to clear up some confusion. An obesity task force was established and today saw an announcement about taking "little steps", and so on. How many of the 128 elements of the report have been put in place?

Dr. Diarmuid Smith

Perhaps I could--

Deputy James Reilly

It would be better to bank the questions. In fairness to other members, who also wish to ask questions, I will be as quick as possible. Dr. Smith stated that 6% of the health budget is spent on diabetes services. Is that correct?

Dr. Diarmuid Smith

That estimate comes from a paper called CODEIRE.

Deputy James Reilly

Other figures refer to €350 million, but 6% of the health budget would be €900 million, a vast sum. In terms of the latter, what our guests are seeking to put in place would be small beer. Approximately €60 million or €70 million would only be less than one tenth of the current budget.

Dr. Diarmuid Smith

Yes. We costed it several years ago. Including manpower and infrastructure, the estimate was for approximately €55 million to €60 million. The cost of diabetes to the health budget is up to €900 million.

Chairman

I do not want to constrain discourse, but it might be better to get the answers after asking the questions.

Deputy James Reilly

Most of my questions have been answered. I fully subscribe to the important proposals. It is another case of putting our money where our mouths are. We must realise that, alongside spending to look after those who are suffering, we must spend new money to prevent furthering suffering, namely, on prevention and detection. It is a classic case of a condition that is easily detectable by screening, which does not cost much money. I am sure colleagues on all sides of the Houses would agree that this should be done without further delay. Even in constrained financial times, we must plan for the future. Not implementing the proposals would be penny wise and pound foolish.

Concerning retinopathy, will the retinal screening programme be aimed at known diabetics or at everyone? The cost implications of the latter would be considerable. Will it be aimed at known diabetics?

Dr. Diarmuid Smith

Yes.

Deputy James Reilly

It has been stated that, for every diabetic diagnosed, there is another who we do not know about and who, after developing complications, will cost the State large sums of money. From financial, moral and ethical points of view, it is a "no-brainer". Our guests have my 100% support.

Deputy Jan O’Sullivan

I thank our guests for their presentation. I add my voice to Deputy Reilly's in that the committee supports our guests fully. It makes sense to implement their proposals. While we would see costs in the short term, there would be long-term savings in community health care.

Dr. Costigan asked what can be done to get things going. Tomorrow we will have the committee's quarterly meeting with the Minister for Health and Children and with Professor Drumm. We can raise this issue with them specifically. I undertake to do so and I am sure other members agree.

Senator Mary M. White

Yes.

Deputy Jan O’Sullivan

The committee and media have debated how to ring-fence funding for the development of new services. Our guests are aware that, in some cases, allocated funding was not spent on new developments. Given the wide variety of measures that must be taken in terms of diabetes, it is important to have a commitment to the effect that funding will be ring-fenced for the proposals made. I hope to get a response on this matter and that the committee will be given a commitment on the money's protection and use across the country as intended. Dr. Yousif referred to ensuring fair access throughout the country.

I have two questions. Our guests and Deputy Reilly discussed retinal screening. Can screening identify members of the community who are pre-diabetic and would this be recommended? If so, what are the implications and how can it be implemented? Our guests' fourth point was on an integrated service in respect of type 2 diabetes. Some of the obstacles are due to financial matters. Have discussions been held with the Irish College of General Practitioners, for example, on what needs to be done, in a practical way, to ensure such interaction between hospital and community services? There are, obviously, cost implications but there are also implications for the organisation of services.

We have not talked much about prevention because the delegates' primary focus is on securing a service for people who have diabetes. However, public education is a huge issue and I wonder if one of the delegates could briefly touch on it.

Deputy Margaret Conlon

My major concern is with the increase in the incidence of childhood diabetes which goes hand in hand with the huge increase in the level of childhood obesity. We have made some strides in education. The social, personal and health education, SPHE, programme in schools promotes a healthy lifestyle and encourages children to have a healthy diet and take exercise. Many schools have gone to great lengths in this regard. They have replaced fizzy drinks machines with water dispensers and encourage healthy lunches. These efforts are often not continued when children leave school for home. This is a huge concern. I know how difficult it is to persuade my own children to eat a healthy diet. We are all busy people and the convenience and fast food lifestyle saves time. It is becoming more difficult to instil in children the good eating habits which must be developed early if they are to be carried into adulthood.

Taking exercise often consists of moving the buttons on a Playstation or Nintendo. We need to tackle the culture of poor diet and lack of exercise. I would like to hear the thoughts of the delegates on how we might do this. It is particularly important in family and community settings because schools are playing their part through the SPHE programme and by encouraging exercise.

I agree that we need a national register in order that we can accurately determine the prevalence of diabetes. On what does Dr. Smith base the estimated figures he has given? How could data be collated for such a register? Would it be done through general practitioners or hospital referrals?

Dr. Smith spoke about patients who come to see hospital consultants every 12 or 18 months. With enhanced primary care teams and the development of more community based facilities, I hope patients might have access to services in their own homes. This would be more appropriate than bringing patients into hospital, often after long waiting periods.

Dr. Smith also spoke about unequal access for patients with diabetes. Which parts of the country are worse than others and where are the major black spots?

Senator Phil Prendergast

Will Dr. Smith tell us the best age at which to take part in a screening programme? I know many cases of diabetes are diagnosed accidentally when patients present with another condition. What is the incidence of diabetes related blindness in Ireland? Did Dr. Smith say it was between 5% and 10%? Have we evidence of the impact of photographic retinal screening on the incidence of diabetes-related blindness?

Ms Clarke may be the best person to answer my next question, and I mean no disrespect to the consultants. We are lucky in south Tipperary in having Dr. Sam Kingston and Ms Margaret O'Connor who do an excellent job in all aspects of diabetes care in the south east. What is the most feared complication of diabetes?

Deputy Kathleen Lynch

Deputy Conlon asked if there was a diabetes black spot. Everyone knows by now that black spot is Cork, as is made clear in the strategy report. A campaign has been in progress in Cork for the past five years. It peaks and wanes because the majority taking part in it are parents of very young children. It is very difficult to take young children on a protest when their blood sugar levels must be checked frequently. Despite the fact that the incidence of type 1 diabetes has doubled in Cork in the past three years, we have a part-time consultant, a part-time dietician, one whole-time nurse and one part-time nurse paid for by the private sector as a result of the campaign. We have no out-of-hours service. Those who know about it telephone the Mater Hospital where there is an excellent service which people in Cork cannot praise highly enough. When parents eventually decide to take their children to Dublin, they find a much better service, even though it is limited. Parents are prepared to travel to Dublin every three months because the service is so much better than in Cork where, if a three monthly appointment is missed, a child must wait a further three months because of pressure of work. If it happens that a list is too long in a six month period, a child could have to wait nine months for an appointment. That is a scandal.

Dr. Smith spoke about a national register of diabetics. The difficulty with such a register is that if one knows the extent of the problem, one is obliged to do something about it. If one does not know, one does not have to do anything. What is happening is absolutely scandalous. Given the effect of our lifestyle on our health, there is a fair chance that we or someone in our families will need treatment for diabetes. That is not a scare tactic but merely a fact.

I speak about children because it is they, as Dr. O'Sullivan said, who will become adults with diabetes. When a child is first diagnosed with diabetes, no help or education pack is available. One woman told me she was sent home with a syringe and an orange and told to practise injecting and that she would get it right eventually. We all know insulin is not the complete answer. Diet and balancing it with the correct level of exercise are also important. When a parent panics at 1 a.m. or 9 p.m., there is no one at the other end of a telephone to provide help. The child then ends up in hospital. Why should a child have to be in hospital when a problem could be so easily dealt with on the telephone?

The witnesses are speaking to the converted and must be as frustrated as we are. The members of the group know exactly what needs to be done, how it can be done and how simply it can be done. It is about the mindset. Someone once said that if one decided that something had to be done, it was quite easy to do it. We are not living in stringent times. Although we have wasted a lot of it, we have great wealth. This is something we should have dealt with and should still deal with. There are black spots in the country and Cork is one of them. I am sure there are others but I know only about Cork.

Senator Geraldine Feeney

I apologise for not being present at the start of the meeting. I congratulate the Chairman on his election.

I welcome the group, in particular Dr. Tony O'Sullivan. It does not seem like three or four years since he was last here. He is a pioneer and long time campaigner on behalf of diabetes sufferers.

A couple of weeks ago the television programme "Prime Time Investigates" ran a great piece of television. Anybody I know who saw it was very taken by it. It tracked the life of a young girl who lost her sight in one eye when she was between 12 and 16 years of age. How could that have gone unnoticed? Surely some medical person should have picked it up. The child was old enough to talk to her mother. I would like to hear the views of the delegation, as the programme did not delve into that issue.

I understand diabetes affects two age groups - those who are too young to comprehend how to deal with it and older people. Are there as many women as men in the older category who are affected? If a man over 50 years of age says he has been diagnosed with diabetes, one is inclined to say it comes with his age, with other horrible things about which we do not want to talk. It seems to be taken for granted that diabetes mainly affects men above a certain age.

I am very interested in the idea of setting up a national diabetes register. I would back it 100%. It seems we would need very little money for it and that it could be put together very quickly. If we do not know how prevalent diabetes is, it would be hard to identify a black spot or whether it is more prevalent in Donegal or Dublin. Is it possible to identify profiles of types of patients in terms of their lifestyles, jobs and environment? Does it run in families? If somebody in a family has diabetes, are his or her offspring or siblings more likely to present with it?

Regarding access to a podiatrist, I would have thought it would go hand in hand with having diabetes. It is something anybody suffering with diabetes needs. I remember when the legislation providing for the establishment of a register of podiatrists was being dealt with, there was a debate as to whether they should be called podiatrists or chiropodists. Former Senator Mary Henry was adamant that they should be called podiatrists. Do we have enough of them in the country? I understand we are seeking 90 to 100 full-time posts. Do we have that manpower? Do we have that many trained? If not, why not? Are they leaving the country because there are no jobs here for them?

Deputy Beverley Flynn

I congratulate the Chairman on his elevation to high office on the committee. I thank the members of the group for their presentation.

Deputy Lynch mentioned black spots. I thought the black spot would be in the west because in my local hospital we had a wonderful diabetes nurse specialist who kept the service going single-handedly at one stage. Unfortunately, there were no backup arrangements in place in the event that, for any reason, she was not available.

It is interesting, given that I would have identified the west as a black spot, that that is where the retinal screening programme began. How successful has that programme been? I note from the presentation that money was made available to extend screening to the west but that, owing to a recruitment ban, it could not be spent. I heard in the past couple of days that there was no recruitment ban within the HSE. Has it been formally announced that the extension of the service will not take place? That is an issue I will take up with Professor Drumm. If there is no recruitment ban within the HSE, the service should continue.

I thank the group for highlighting at least a couple of areas where we can start because there are so many gaps in services. Unless there is a priority list, we will not even get off the ground. A retinal screening programme should be a priority. It is easily identified as being cost effective and we should be in a position to get a commitment on it. I intend to focus on the issue in the meeting with Professor Drumm. That is not to say, however, that the other areas identified are not also important. If we at least got a retinal screening programme off the ground, it would be a positive step.

Deputy Caoimhghín Ó Caoláin

Go raibh maith agat, a Chathaoirligh, agus comhghairdeacas leat.

I, too, join in welcoming the representatives of the Irish Endocrine Society and the Diabetes Federation of Ireland. I share the concern of all present at the growing prevalence of diabetes and obesity and the need to address these major public health issues. I am alarmed. We had prior opportunity to peruse the presentation from Dr. Smith and I apologise for not being able to attend the oral presentation.

On the report entitled, Diabetes Care: Securing the Future, which was submitted to the Minister in 2002 and on which the expert advisory group established in 2006 would have based a certain amount of its work, I presume it was the anchor in the development of a national diabetes strategy. It is not clear from the presentation whether the outworking of the expert advisory group was the presentation of a national diabetes strategy. Was it a product of its deliberations? Was it actually reached? Do we have such a strategy in place? Is it the basis on which we can properly support the group's ongoing efforts in our role as advocates and lobbyists within the Houses of the Oireachtas? I do not have a copy of it and do not know whether it was circulated here today. It would be of great importance. I wonder if, within the strategy document, or however it is styled, the outworking of the expert advisory group's work prioritises it.

I know what is being argued for is an integrated service across the board. However, given the ever straitening economic realities we face and the many flaws in the overall health delivery system in the State, it is unlikely that we will be able to argue for everything in a single deliverable. Has the group prioritised what it is essential to address? Is it research in determining where? Is it the high levels of foot amputations that are of real concern, the loss of sight, the failure to provide support services for children? I would like to get some sense of this. More important, if there was feedback to me and other members of the committee, we could better reflect on the case for the strategy to be not only in situ but implemented.

Chairman

A large number of questions have been put.

Deputy James Reilly

I do not mean to be rude, but I must leave to go to the Chamber. Therefore, could my first question be answered first? It relates to the obesity task force.

Dr. Diarmuid Smith

Members have asked well informed questions and I thank them for their interest. I am not sure how many of the recommendations of the obesity task force have been implemented but think it is close to zero. There was a commitment to fund the establishment of four obesity centres but only the Loughlinstown centre is being funded. Cork and Galway were identified as locations for two other centres but the resources have been blocked to fund them appropriately. Services are directed towards the surgical management of obesity. Therefore, patients with a body mass index of more than 40 are treated. We have no initiatives to try to identify people who are overweight or in the earlier stages of obesity; in other words, we have no initiatives to intervene to try to stop the overweight patient from becoming obese.

Deputy James Reilly

I thank Dr. Smith. I apologise for having to leave the meeting.

Dr. Colm Costigan

When Professor Drumm comes before the joint committee tomorrow, he could be made aware that the GP contract works against the care of patients suffering from a chronic illness. There is a need for a new GP contract that will support implementation of the integrated care model. That is what we are looking for but the current GP contract does not support general practitioners in becoming involved in such a model.

Deputy James Reilly

On a point of information, I inform the joint committee that there is acare watch programme outside the terms of the general contract which could suit very nicely in caring for patients with diabetes.

Chairman

Will Dr. Costigan elaborate on how the current contract militates against such care?

Dr. Colm Costigan

As Dr. O'Sullivan is a general practitioner, it would be better if he responded.

Dr. Tony O’Sullivan

In terms of the involvement of general practitioners, while there has been no provision in the GMS contract to manage chronic illness, many GPs have shown an interest in the matter and manage patients with diabetes informally. We know from an Irish College of General Practitioners survey of general practice which we conducted in the past couple of years that approximately 65% of patients with type 2 diabetes were being managed within general practice. This is very worrying because, essentially, while almost all general practitioners were taking part in providing care, only 12% or 13% have any of the required structures in place to assist them in managing type 2 diabetes correctly. It has long been shown in research studies that if one does not manage type 2 diabetes through a structured approach, it will not work and such patients will not do well. They will develop complications and die of premature heart disease.

We operate in a more structured way in various centres - there are centres in the midlands, the south and east of Dublin and the north east - in which, essentially, groups of general practitioners are supported by a committee which steers the scheme. The general practitioners have received additional training in diabetes care and are supported by dietitians and diabetes nurses. Their own practice nurses have also some training. I operate in one of these schemes. My patients - I have about 70 with type 2 diabetes who are involved in the scheme - come to see me twice a year for a simple check-up. The general practitioners are not trying to replicate specialist diabetes care services but providing routine care on a regular basis as necessary. The specialists deal with the more difficult aspects such as screening for eye or kidney diseases. We will do blood tests, check blood pressure, weight, cholesterol levels and so on. My patients will see the general practitioner, a nurse and a dietitian during every visit. Once a year they will go to a hospital for an annual review where there is additional screening for eye diseases, foot care and so on. By doing this patients are receiving the right care in the right place. That is the principle followed in the 2002 health strategy.

Chairman

Let us try to work systematically through the points raised.

Dr. Diarmuid Smith

On Dr. O'Sullivan's last point, Beaumont Hospital was involved in an integrated shared care model with general practitioners in north Dublin. We published our data which showed patients liked that system. They liked going to their general practitioner every three months and the hospital every year to see the specialist. The data for this integrated shared care system showed good control of glucose levels, blood pressure and lipids. Unfortunately, our programme collapsed due to lack of funding under the primary care programme.

I will touch on how we arrived at the figure for the prevalence of diabetes. The HSE employed a group called the Institute of Public Health in Ireland, of which I am a member, to try to determine the prevalence of diabetes. I agree with all those members who suggest money should be put towards developing a national diabetes register. The institute looked at a paper published in the journal of medicine in 1980 on the prevalence of diabetes in the Asian population in Coventry. In 1980 we applied old diagnostic criteria which have since changed and been lowered in the past couple of years but a public health model was derived using the data from the 1980 study, as well as data for obesity from the United Kingdom because we did not have such data in Ireland. Using socioeconomic data from the United Kingdom, we came up with a figure of around 4.7%, which is probably about right. The average here is probably lower than that elsewhere in Europe because we have a younger population. The prevalence of diabetes increases with age; as one gets older, one is more likely to develop type 2 diabetes. Again, the frustration of being involved in that process stems from the fact that instead of being allowed to establish a diabetes register to determine the prevalence of the disease, we have had this long drawn out mathematical model to try to estimate its prevalence.

I ask Dr. Yousif to address some of the questions posed on retinopathy.

Dr. Obada Yousif

The best way to proceed is to group the questions posed on retinopathy together. As Dr. Smith stated, about 20% of people with type 2 diabetes have retinopathy to some degree at the time of diagnosis, while 50% of those with type 1 will develop it after ten years. There are two major trials - the diabetes control and complication trial for people with type 1 diabetes and the UK pds for those with type 2. Both trials have proved unequivocally that diabetic retinopathy can be prevented. In 2003 approximately 322,000 people in Ireland were registered as being blind with diabetes. This is the only figure we have taken from a survey and its represents a figure of 4.4%. The evidence for a diabetic retinopathy screening programme comes from Iceland where a model has been applied since 1980. Before it was applied, the figure for the number of people suffering from diabetes related sight threatened retinopathy was 4.8%, which figure was reduced to 0.5% in 2005, indicating that such a programme could prove very successful and effective. It has been shown in multiple studies to be sensitive and specific in detecting sight threatened retinopathy. It is also cost effective. The costing has been derived from a cost analysis model applied and published in Diabetes Care: Securing the Future, a document which dates from 2002. At the time the estimated capital cost of a diabetes retinopathy screening unit was €1,984,603, with an ongoing annual cost of €2.553 million, which one can weigh against the annual cost of looking after 100 registered blind people of €2.403 million.

It comes as no surprise that one can save a lot of money by implementing a national retinal screening programme. The recommendation of the group present is to provide a retinal screening unit in each HSE region, either a mobile or stationary unit, depending on the public-rural mix and geographical profile of the area. Each regional diabetes centre should also be adequately resourced and funded, with a retinal screening unit. There should be a centralised screening mechanism, whereby images from rural areas would be streamlined into a central station where they could be placed in the different grades of retinopathy and dealt with according to a pre-agreed priority strategy. We also recommend an increase in the number of retinal surgeons from ten to 15 to deal with the work generated by the expected level of detection.

On the question concerning the most feared complication, a survey published in the United States in 2006 showed most patients feared blindness, with 41% of adult diabetes sufferers declaring it the most feared complication, as opposed to 16% who cited premature death as their greatest fear. Blindness, given all the emotional trauma, stresses and challenges associated with it, is the single most feared complication, which is why we are pushing for a retinal screening programme as a top priority.

Deputy Caoimhghín Ó Caoláin

I apologise for the fact that, as a representative of a smaller party, I must now go into the Chamber. I ask the secretary to send me a brief note outlining the responses to my questions.

Chairman

That can be arranged.

Dr. Diarmuid Smith

A question was asked as to at what age we start retinopathy screening. There are two types of diabetes. Patients with type 1 - prevalence is doubling every decade - present acutely, within six to eight weeks of their blood sugars climbing. They present with thirst, despite the fact that they are drinking a lot of water or are losing weight. Having had high blood sugars for only two months at the time they present, there are no complications and the challenge is to prevent them for 30, 40 or 50 years. That is very difficult. We have to try to keep blood sugars from becoming too high, when there is a higher risk of complications, and becoming too low, when there is hypoglycaemia. If members see a person looking as well as Dr. O'Sullivan after 30 years with type 1 diabetes, they should stand and applaud him because it is very difficult. Patients with type 1 diabetes need psychological support to help them through it but in Ireland very little is available. For type 1 diabetes, we will often start the screening process between three and five years after a patient has been diagnosed, depending on local protocols.

Type 2 diabetes may remain undiagnosed for between eight and ten years. Therefore, when sufferers present, a number of them have complications. Some data suggest a figure of 20% but a greater number has been suggested in the United Kingdom. They have eye disease from the time of presentation. Therefore, we need to screen them from the start of their diagnosis.

On Senator Feeney's question, I missed the "Prime Time" debate on the lady to whom she referred. Therefore, I cannot comment on her individual case.

Dr. Tony O’Sullivan

I thought the programme in question was very poignant and highlighted how health services were organised to manage genuine health threats. The young lady in question who was aged 16 years had had diabetes since she was aged two, or for 14 years. Unfortunately, she developed retinopathy because of a lack of two things which everybody with diabetes should have, the first of which is access to good care and education, whereby she and her parents could have understood her condition properly, managed it from day to day and controlled blood glucose levels. It also involves access to modern insulin products. However, I am fearful that access to medication and technology such as insulin pumps and glucose monitoring equipment which is developing rapidly but expensive might be under threat.

The other necessity is access to retinopathy screening. The risk of the young lady developing retinopathy was significant. I have been involved in diabetes associations throughout Europe for some years and the only other place where I witnessed such an outcome was in former Soviet countries such as Belarus, Uzbekistan and Kazakhstan. I have never seen anything like it in western Europe. Therefore, it is shocking and reflects poorly on us. Perhaps members could impress this fact on the people they will meet tomorrow.

We in the expert advisory group have talked about joining the aviation authority because of all the pilot projects which have been carried out in the field of diabetes over a number of years. We do not want retinopathy screening extended to cover the whole of the HSE west region as a pilot project. We want it to be a step towards the entire country being covered at least within the next three years. That is very possible as it has been done comprehensively in the United Kingdom. For everybody attending today, it is the single most important priority. Therefore, I ask members to press the point tomorrow.

Dr. Diarmuid Smith

I ask Dr. Costigan to address the issue of paediatric diabetes.

Dr. Colm Costigan

Before I do, in answer to Deputy Ó Caoláin's question, the expert advisory group's report has been endorsed and we are trying to gain support for its implementation. Perhaps he will offer support for its implementation tomorrow because it addresses all the issues about which we talked.

On the diabetes register, the report mentions an integrated model of care. We must have a computerised system between primary and secondary care. If we get the IT system, it will generate a diabetes register. The other priority relates to paediatrics and adolescents. There are only approximately 2,500 children and adolescents with type 1 diabetes. It is not a huge number. As Deputy Lynch rightly said, there is wide variation in the quality of the service provided throughout the country. I do not disagree with what she said about Cork and other areas such as Limerick and the west which are poorly serviced.

The report calls for a regional centre with more than 150 children in four or five regions. Cork is an obvious example but others might be Limerick, Galway and a number of areas which meet the criteria as regards patient numbers. They would be supported to a level that would allow them to use pumps and all the modern technology available because type 1 diabetes needs to be managed correctly. As Dr. O'Sullivan said, pumps are the future but in Cork even adults cannot get one. The services are extremely poor because they are not resourced. The recommendations form a blueprint. If we can gain support and receive a commitment to move forward, we can make piecemeal progress in all areas.

The second question on children and adolescents was related to type 2 diabetes which is now seen in obese teenagers, usually with a family history of diabetes. Underneath the surface, a huge number of overweight adolescents are struggling to keep up huge insulin production and are about to have diabetes. We must do something about this. It is the responsibility of legislators because it involves practical, social issues rather than just medical issues, although it becomes a medical issue when one reaches the hospital or clinic. The promotion of playgrounds and activity is important, as the committee knows well. I urge the committee to promote these as much as possible, because that is primary prevention. Much of this discussion relates to secondary prevention of complications. Type 1 diabetes cannot be prevented, but we can reduce the incidence of type 2 diabetes through primary prevention through population and social services.

I have dealt with paediatrics and with the question on the expert advisory group. Was there any other issue I should address?

Dr. Diarmuid Smith

I wish to comment on the diabetes register. Many hospitals have a database but unfortunately we do not have one in Beaumont and are still working on paper. Many hospitals share the same IT systems and share the database. Our colleagues in the west now share information with the primary care practices in the west allowing them access to the database. Therefore, if a patient comes in and treatment is changed by the primary care practice, that is registered on the hospital database. We believe a national diabetes register would be an easy and cost-effective way to implement such care in the near future.

In response to Deputy Conlon's point on obesity, I do not see paediatric patients. We have tried to establish an obesity service, without funding, for patients who are overweight or obese, in the hope that if we get the healthy message to adults, it will filter down to children. We have established the programme with Dublin City University, which has sports exercise specialists, because one of the problems we face with adults is that they feel uncomfortable going to a gym. They do not feel like going to a gym if they are overweight or obese because they do not know what exercise to do, they do not know if they are healthy enough to exercise, they are afraid they might drop dead on a treadmill and feel uncomfortable in a pair of gym shorts. With a small pilot project we initiated people into individualised programmes over a four-month period and they lost 5% of their body weight. Management of obesity requires a significant multifactorial approach involving public health personnel, paediatric hospitals, support of the dietetic community and the utilisation of some of the other expertise we have, such as sports specialists, etc.

Chairman

Are there any further comments?

Dr. Tony O’Sullivan

I would like to address the issue of screening and detecting people with diabetes at an early stage. Diabetes is a major issue and we do not know who has diabetes that has not been diagnosed or picked up yet. However, we have indirect evidence that suggests that most people in the British Isles who develop type 2 diabetes have it for approximately five years before it is detected. In the UK study referred to earlier, half of newly diagnosed patients involved in the study already had some signs of eye disease. It is clear there would be significant benefit in identifying such people sooner.

One of the striking things I note from the expert advisory group is that we have been prioritising certain areas. We have set aside issues such as prevention and early detection in the interest of dealing with emergencies related to the problems of people who already have a diagnosis of diabetes. It struck me as a little odd that a country like Finland, which is very similar in size to Ireland but not as economically well off as we are, has a very well structured early detection and screening programme. That programme takes place through general practice, alongside most of the integrated care. This is, obviously, a side benefit of progressing integrated care.

Deputy Ó Caoláin asked whether we were considering a strategy or a rolling programme. When we joined the expert advisory group, most of us felt we had seen strategies come and go. The shopping list in a strategy tended to be long, difficult and too costly, which resulted in the strategy being left behind. We hoped the expert advisory group would be a genuine advisory group that would be integrated with the HSE and would advise it, as money became available, to progress issues in terms of diabetes. We are disappointed that this far down the road, we have not got any of the things we recommended. The intention is that as we move forward, we come up with the next set of priorities and the next level of progress. That is how health services should develop.

I wish to make a final point with regard to the committee's discussion with the Minister tomorrow. One of the most serious disappointments of the expert advisory group has been the lack of expressed direction. We were told that the expert advisory group would have a key role, but when Dr. Costigan and his colleagues presented the findings to the most senior level within the HSE, we got no real feedback to say it agreed that this was how it wanted things to proceed. We are only going on an assumption that we have approval. How then can I go back to my 2,000 general practitioner colleagues and tell them that integrated care is coming down the line and they should continue to get ready for it? How can I advise them they should prepare for this by doing training courses on diabetes, prepare their practice and set up practice registers for patients with diabetes? I cannot say that currently because we do not have direction on the issue.

Deputy Jan O’Sullivan

Will Dr. O'Sullivan clarify how general practitioners would conduct screening? Would screening be done just by checking for diabetes during routine patient visits or how would a screening programme operate?

Dr. Tony O’Sullivan

I like the Finnish model which involves GPs approaching people over 50 years of age in their practice. One starts with the receptionist handing the patient a simple questionnaire which asks about major risk factors such as family history, lack of exercise, whether the patient has had a large baby, etc. All patients are advised about healthy living, which is a positive move and, therefore, they get preventive advice even when not at risk. Patients who are considered at-risk then go forward for glucose testing which may involve a finger stick test in the practice or a formal blood glucose test. Then, if necessary, they move on to a diagnostic test. Usually, there are two or three steps involved.

Deputy Jan O’Sullivan

It could be very easily implemented if that is the case.

Dr. Tony O’Sullivan

It could.

Dr. Diarmuid Smith

The document we submitted describes a category called pre-diabetes. This is a category where blood sugars are a bit higher than normal, but not quite in the diabetes range. We estimate that the prevalence of pre-diabetes is approximately 11% of the population of the country. There is a 50% to 60% chance that over the next five years, those people will cross over the mark and become diabetic. Screening would be easy to do, but we need the resources to intervene and help those people to lose weight, improve their lifestyle and see a dietitian or nurse, etc.

Deputy Kathleen Lynch

I had not realised that giving birth to big babies was a factor. How are big babies a factor?

Dr. Tony O’Sullivan

Some women develop a kind of semi-diabetes in pregnancy and some women develop real diabetes in pregnancy. This is because the pregnant state raises a woman's blood glucose, which pushes those near the limits above those limits. Babies of women at or around that level tend to be heavier. A baby weighing over nine pounds, for example, would be a good indicator that the mother has some sugar problems lurking in the background.

Deputy Kathleen Lynch

That is interesting.

Deputy Margaret Conlon

Would those mothers have had diabetes? Lots of women who have nine pound babies may not have had any signs of diabetes.

Dr. Diarmuid Smith

They may not have had diabetes or may not have been screened for diabetes during pregnancy. If we go through the history and hear there is a maternal history of large babies, this flags to us that those people are at risk of developing diabetes.

Chairman

I thank the delegation for its succinct and informative presentations.

Dr. Diarmuid Smith

I would just like to make one comment in response to Deputy Flynn with regard to money for HSE west. Perhaps Dr. Costigan can inform me of the details. We are conscious that the committee is presenting a report to the Minister tomorrow. Just before coming in here today, I understood approval was given by the Minister yesterday. Is that correct?

Dr. Colm Costigan

I had a telephone call on Friday to say that of the 23 whole-time equivalents requested for the west, eight had been approved. We do not know whether that is real, but it is the current situation. Something is happening, which is good.

Dr. Diarmuid Smith

We reiterate Dr. O'Sullivan's point. We have done the pilot. We want a national programme.

Deputy Kathleen Lynch

Perhaps the delegation should come in again next month. It might get the other eight.

Chairman

It is certainly fortuitous that we meet the delegation the day before we meet the Minister and Professor Drumm.

Deputy Jan O’Sullivan

The HSE statement is out today.

Chairman

As a committee we can commit ourselves to supporting the delegation, particularly in the priority areas it has set before us today. I guarantee that the committee will continue to raise these matters with the Minister, Ministers of State, officials and the HSE. We will do anything we can collectively or individually to advance the case.

Dr. Diarmuid Smith

We thank the committee for its interest and time. Its questions really help us to realise how well-informed and committed it is. I thank Ms Áine Breathnach for her help in getting us here today.

Chairman

As the delegation withdraws, I ask members to hold on for a few important housekeeping matters with which we must deal.

The joint committee went into private session at 4.30 p.m. and adjourned at 4.50 p.m. until 9.30 a.m. on Wednesday, 18 June 2008.