Wednesday, 19 October 2011
National Vision Policy
I welcome Minister of State. The issue I wish to raise follows quite nicely from the previous debate because it is with regard to the provision of diabetic pumps and the appropriate backup staff for children with type 1 diabetes in County Galway.
Approximately 3,000 children and adolescents in Ireland have diabetes, and approximately 850 of them live in the HSE west area of which 200 to 250 live in Galway city and county. Almost all of these children and adolescents have type 1 diabetes, with the incidence of type 1 diabetes in childhood and adolescence having doubled in the past 20 years, which is quite an increase.
Generally, Ireland has very poor paediatric diabetes care, with over half of the patients having no access to a proper multidisciplinary team and many of the rest travelling long distances for care. Currently, children and adolescents with diabetes outside of Dublin are at a geographical disadvantage because of the lack of local services. On the other hand, children and adolescents with diabetes in Dublin, where there are services, are at a numerical disadvantage because so many children from outside Dublin are forced to travel there. Dublin services are inundated with referrals for children and adolescents with diabetes from throughout the country.
Children and adolescents with diabetes must attend hospital on average four to five times per year to monitor their diabetes. Monitoring children and adolescents with diabetes in hospital aims to limit the subtle but cumulative damage which diabetes can cause to the eyes, kidneys, nerves and smaller blood vessels. Up to 50% of children and adolescents with diabetes will have some form of long-term diabetes complication by the time they reach adulthood. This is worrying. Diabetes is a cumulative condition and if it is not properly approached and dealt with, complications can emerge quickly. In order to reduce the risk of a child developing any of these long-term complications, children and adolescents with diabetes learn to control their diabetes and to monitor their blood sugars and insulin levels.
Self-control of diabetes is challenging but this is what the parents want because they know that is what is best for their children. Technological advances now allow children and adolescents with diabetes to monitor their diabetes with intensive therapies, such as insulin pumps, much more effectively and accurately than with standard treatments.
Insulin pumps are the focus of my Adjournment matter. An insulin pump is a medical device used for the administration of insulin in the treatment of diabetes and of MDI, multiple daily injections of insulin. Both are an advance on the standard twice-daily injection with insulin. Insulin pumps are more correctly referred to as continuous subcutaneous insulin infusion. Insulin pump technology is not available at hospitals where the vast majority of children and adolescents with diabetes receive their diabetes care. Pumps are an effective method of insulin delivery and are the method of choice in many countries that practise intensive insulin management. An improved quality of life is associated with pump usage.
The use of insulin pump technology makes a lot of sense. The long-term cost to the health service of not approaching diabetes early is huge. Patients in Ireland should have an equal opportunity to access pump therapy and they and their parents are increasingly seeking insulin pumps. The funding issue regarding pumps is improving, but it is still inadequate as demand for pumps, for example in Galway University Hospital, vastly exceeds supply. Insulin pumps are, essentially, unavailable in Galway where only 12 pumps are allocated per year, despite the hospital having the correct clinical expertise on hand. Parents of children with diabetes in Galway are clear that they want this treatment and more pumps made available locally. Having children treated in Dublin means four to five trips per year, days off school and the transfer of the child's care to a Dublin hospital where there are no records for those children.
The provision of a comprehensive pump service requires essential personnel on the mutidisciplinary team, in particular a paediatric diabetes dietician and a pump nurse. A paediatric diabetes dietician is an essential member of the multidisciplinary team required to offer effective insulin management to parents and children. The paediatric diabetes service at Galway University Hospital, with a patient load of 110, has access to dietetic services for just 12 hours per month. This is below recommended levels and this service is currently not available as the person in question is on maternity leave and due to the embargo on recruitment has not been replaced. This issue must be re-examined.
The diabetes nurse specialist staffing levels are also below recommended levels. The hospital has only a whole time equivalent of 0.75 as opposed to the recommended level of 1.5 and there is no psychologist on the team. Despite the best effort of team members, this can impact on the quality of care provided. A ring-fenced paediatric dietetic service at Galway University Hospital and nationally is urgently required to ensure the provision of intensive insulin management and a satisfactory insulin pump service.
I am surprised to learn that insulin pumps are more available in some counties, such as Dublin and Clare. These counties have funding, but others do not. Will the Minister ensure that the multidisciplinary team for diabetes care is properly and adequately staffed? Investing now in paediatric diabetes care will reduce the cost to the State in the long run of dealing with complications in adults caused by poorly managed paediatric care. Will the Minister of State explain why there are adequate pumps available in Dublin and Clare, but not in Galway where there is a case load of 110 patients, but only 12 pumps available?
I thank Senator Healy Eames for raising this issue.
It is estimated that there are currently between 3,000 and 4,000 children and young adults under 16 years of age with diabetes in Ireland. Over 90% have type 1 diabetes but there are an increasing number of young patients developing type 2 diabetes. The incidence of type 1 diabetes is also increasing by about 2 to 3% per year and experts anticipate that over the next ten to 15 years, the incidence of type 1 diabetes will double. Type 1 diabetes is a particularly complex condition in children and young adults and so it is recommended that their care be delivered in a multidisciplinary setting with access to a consultant paediatric endocrinologist and other diabetes health care specialists. In view of the complexity of the condition and the significant dangers of hypoglycaemia to the developing brain, continuous subcutaneous insulin infusion, commonly referred to as insulin pump therapy, is often a preferred treatment option. An insulin pump is a method of administering insulin on a continuous infusion basis and is portable and easy to use. It is an alternative to injections and is an appropriate therapy for younger children.
The suitability of certain children or adolescents for insulin pumps is also a factor that must be taken into account. The HSE national clinical programme for diabetes - which includes the care of children and adolescents with diabetes - was established within the clinical strategy and programmes directorate. The purpose of the programme is to define the way diabetic clinical services should be delivered, resourced and measured. A clinician has been appointed to lead on the development of the programme, which has as its central aim to save lives, eyes and limbs of patients with diabetes.
Improvements in the care for children and young adults with diabetes are required and with this in mind a number of proposed models have been suggested. One model, based on eight to ten regional networks with the three existing Dublin centres acting as a tertiary hub of excellence and continuing to see one third of the national paediatric and adolescent diabetes population, comes from the recent Diabetes Federation of Ireland diabetes action campaign. The second model is from the expert advisory group report. This model proposes that care be centralised for each region in a dedicated paediatric and adolescent diabetes centre, looking after at least 150 children or adolescents. Ideally the centre should be in a regional hospital that has an adult diabetes centre to facilitate transition to adult care. However, the final shape of any model will be determined by the working group and may be a variation of either of the two earlier models described.
While services are provided for children and adolescents with diabetes in all the major hospitals across HSE west, there is currently no pump service available and children must attend either Crumlin or Temple Street to avail of this service. I wish to inform the House that the national clinical leads for diabetes and paediatrics met recently to discuss the issues involved in the care of children and adolescents with diabetes. They set up a working group to assess current services across the country, to agree a model of care and to standardise these across the country. This work will also include work on the provision of insulin pumps. The group will also work on a policy to prevent and aid the early detection of diabetes in young children and adolescents. The group was only recently established and its work is continuing.
In HSE west, services are provided by paediatricians with a special interest in diabetes in Galway University Hospital, Portiuncula Hospital and Mayo General Hospital. The consultants are supported by clinical nurse specialists in diabetes and the diabetes teams have access to dieticians, psychologists and social workers. The consultants are supported by clinical nurse specialists in diabetes and the diabetes teams have access to dieticians, psychologists and social workers. In addition, transitional clinics are provided across HSE west for adolescents who are transferring from the paediatric service to the adult service. It is widely recognised that secondary or acute care alone cannot cope with the current and increasing burden of disease. Re-organising systems into more integrated models presents opportunities for a more efficient and effective approach to the management of diabetes care. Diabetes service implementation groups have been established countrywide, including in HSE west. At national level, a priority of the working group is to progress the integrated care model of care. Work is continuing in this regard in order to improve services available for this chronic disease across the health system.
Regarding maternity leave and speaking as the Minister of State with responsibility for equality, they should be exempt from the embargo.
I am delighted by the final comment of the Minister of State. Everything the Minister of State said is what I said. She reiterated the story and, by and large, she accepts that there is a strong case for what we have said. When will the working group deliberate? What is the timeframe for the group to decide which measure to take? The Minister of State said that a clinician has been appointed to lead the development of the programme. Where is the clinician based?
The clinician will be a national lead, which is important. The difficulty with diabetes is that the service has been patchy around the country. The service in Dublin has always been the best and people travel from as far as Cork. There was a huge difficulty with childhood diabetes in Cork over the past number of years. It has improved but further improvements remain to be made. Rather than a standardised performance across the country, the performance is patchy. A clinical lead brings standardisation into play. Putting the working group in place is a huge step forward. This is a problem that will double in the coming years and we must consider management of this chronic disease. The consequences of not managing it properly may be horrendous. It is often forgotten in this debate that having a specialist nurse at the end of the phone line, who can reassure parents in the early stages and explain how to manage the child's condition, would prevent many children from ending up in hospital. I hope the working group will look seriously at this.
I cannot say but, like the teams under Barry White and Martin Connor in the special delivery units, there is no deadline or timeframe. Rather, it is about rolling out the service and ensuring everyone gets the same service.