Dáil Éireann Debate, Wednesday - 17 June 2015
175. Deputy Terence Flanagan asked the Minister for Health to outline his plans for implementing the recommendations of the World Health Organization's resolution (details supplied); and if he will make a statement on the matter. [24140/15]
View answerThe resolution concerned of the World Health Organisation is largely encompassed in the aims and work of the HSE's National Clinical Programme for Epilepsy (NCPE). This has been in operation since 2010. Its main objective is to provide the best value, safe care for all people with epilepsy in the right place, at the right time by sharing the best available information.
Under the first recommendation of the resolution, the NCPE has a specific remit to describe models of care and formulate guidelines, where necessary, which aim to improve quality, access and value of clinical care. An advisory group of medical, nursing, technical and patient experts was convened with a remit to define a Model of Care for epilepsy. Consensus was rapidly agreed based on best international practice on the need to define centres of expertise nationally, to invest in nurse specialists and electronic communication, and to standardise procedures in epilepsy care. The NCPE has supported the implementation of this policy position with over 30 new Whole Time Equivalents (WTEs) in 6 defined national centres. The Model of Care has been signed off by the National Clinical Lead and Clinical Advisory Group and is being prepared for submission to the HSE Office of the National Director for Clinical Strategy and Programmes.
The NCPE has also developed and supported the implementation of an Electronic Patient Record; this promotes patient safety by supporting the availability of current, accurate patient information to clinicians involved in patient care. In addition, a suite of over 40 guidance documents (SOPs) have been developed by the NCPE. These look at the management of persons with Epilepsy across the care continuum from initial presentation, specialised treatment (including surgery) and to long-term management in primary care.
A detailed SOP has also been developed for the management of women with epilepsy, which includes family planning, pregnancy, delivery right through to menopause. This was completed in conjunction with the National Clinical Programme for Obstetrics and Gynaecology. Three Primary Care SOPs have also been developed in conjunction with the National Clinical Programme for Primary Care to cover the critical areas of managing seizures in the community, the process of referral to specialised services and the intelligent support process for managing Epilepsy in primary care. The NCPE also contributes to the National Medicines Liaison Centre collaborative and GP bulletins with information relating to the management of Epilepsy in the Community.
Under the second recommendation of the WHO resolution, the NCPE's Model of Care for Epilepsy advocates self management. Epilepsy specific self-management programmes, such as Epilepsy Ireland’s STEPS programme (Support & Training in Epilepsy Self-management) and the ‘Training for Success’ initiative run at the Sligo Institute of Technology, address more condition-specific issues such as living with Epilepsy; managing seizure triggers; lifestyle and safety; and understanding the impact of diet, exercise and sleep. The NCPE also supports the development of transitional programmes that support adolescents with epilepsy transition from paediatric services to adult services. Included in successful transition is the development of self-management and self-awareness skills to enable the young adult to take more responsibility for the management of their condition.
For the third recommendation of the WHO resolution, the NCPE has a close working relationship with Epilepsy Ireland. The programme regularly contributes to the Epilepsy Ireland newsletter and various national and regional conferences with updated information on developments within the programme.
Finally, on the question of research as per the fourth recommendation of the resolution, long-standing links with the Royal College of Surgeons in Ireland Genetics group has resulted in senior participation in the International League Against Epilepsy (ILAE) genetics consortium; this has been making important discoveries that will impact on diagnosis and treatment of epilepsy in the future. In this regard, significant advances on epilepsy research capacity have been made in Ireland. Furthermore, clinicians and researchers associated with the NCPE have been regular recipients of Health Research Board sponsored research grants. Other examples of research projects underway in Ireland include:
- Improving our understanding of the gene-based regulation of neuronal cell death and hippocampal remodelling in epilepsy
- European collaborative project called EpimiRNA which aims to understand molecular mechanisms, diagnostics and develop novel therapeutics for epilepsy
- Research group focused on identifying genetic predictors of the development and treatment of epilepsy
- A study on children with undiagnosed early onset epileptic encephalopathy.
