EPILEPSY CARE FOUNDATION
We want you to talk about epilepsy
We need you to tell people about it
We need everyone to be aware and understand epilepsy
Epilepsy is a medical condition which can have a serious effect on an individuals’ lifestyle and that of their family and friends. Epilepsy is often misunderstood by the general public. Through ignorance people are often afraid of the condition and in some cases there is a stigma attached to epilepsy.
The epilepsy care foundation would like you to become more involved in changing this situation whether you are directly involved or not. We want to launch a comprehensive Awareness Campaign to help the general public understand the condition and improve the lifestyle of individuals with epilepsy, their family and friends. Our first stage in this campaign is to
Talk about it!!!!!
Epilepsy directly impacts the lives of around 40,000 people in Ireland and indirectly has a huge effect on many others – family members, carers and workplace colleagues. In addition 20% of epilepsy patients suffer from learning difficulties while 30% of people with learning difficulties have epilepsy. Compared to other health conditions such as cancer and trauma, it has a relatively low profile in the public mind and has tended not to be a high priority area in the development of our health services. Currently Irish epilepsy services now tend to be characterised by geographic fragmentation, lack of integration and unacceptably long waiting times.
The last census showed a population of 4,234,925 in Ireland an increase of 8.1% since 2002 (the largest ever increase recorded for such a period). Currently there are 18 publicly appointed consultant neurologists in Ireland. Therefore the current ratio of Consultant Neurologists per head of population is 1 per 235,000. The highest in Western countries ideally in Ireland we need to have a ratio of 1 per 100,000.
In addition there are only 4 Paediatric Neurologists in Ireland. Two are in Temple Street Hospital and two in Crumlin Hospital. There is no dedicated Paediatric Neurophysiologist in Ireland. Expansion of this is necessary and the new children’s hospital would provide a good starting platform. Neurophysiologists provide analysis, monitoring and care in Epilepsy and related conditions. This is a vital requirement with children to ensure correct diagnosis at an early age
The huge shortage on Consultant Neurologists in Ireland and lack of adequate resources across the spectrum of multi disciplinary expertise significantly impedes on the timely delivery of optimum Epilepsy care in Ireland relevant to both the public and private sectors. There is also a lack of dynamic planning for the evolving and future needs of the population. Changes in demographics and therapeutics are also being ignored.
The previous Minister for Health and Children described care as being episodic and reactive reflects well the current situation with the diagnosis and treatment of epilepsy. Add to that description, the fact that sufferers have extended waits at all stages in the process of diagnosis and treatment and one gets a picture of the clinical risk and poor quality experience of this group of people.
Some facts about the current experience of patients tell the story:
The typical wait between referral from GP and being seen by a neurologist is 2 years
The patient will be seen for a second time depending on circumstances, medical condition and level of stability
The majority of patients undergoing a diagnostic work-up will require brain imaging using MRI. The typical wait for the scan is 9 months
If a video EEG is needed, patients typically wait for 2 years for an available inpatient slot
If after MRI and EEG surgery is deemed necessary, patients typically wait a further 1 year
The total waiting time for a new patient from first referral through to surgery is therefore in excess of five years. Given the volatility of this condition and the uncertainty and anxiety which it produces in patients and their families, this wait is unbearably long and has a major impact on their quality of life. It also directly impacts the personal safety of sufferers –injuries and even death arising from uncontrolled seizures – and it often impacts vocational and social life.