Epilepsy Care

Improve the Care and Awareness of Epilepsy - The Case for a National Epilepsy Centre in Ireland

The current situation

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 for development in 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 after 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.

Current and possible pathways of care

Current Model Possible Model

The Benefits of a National Epilepsy Centre

The pathways of care shown above detail the current scenario (patient A) and the improvements which can be introduced through a national epilepsy centre (Patient B). Patients attending their GPs or A&E departments will have access to speedy diagnosis. Thereafter if a full day assessment is needed, this will take place within two weeks. This can be followed almost immediately by in-house EEG and MRI assessment. Typically the pathway from first referral to surgery (if needed) using the facilities of the national centre would be four months. Patients using the facilities would be clear about the steps on the journey of diagnosis and treatment and would have these steps delivered in a timely manner which would facilitate them being able to order their lives and deal purposefully with their new diagnosis. There would be much more of a sense of sufferers having control over what was happening to them.

The national centre will also enable neurologists and GPs to monitor patients at agreed intervals knowing that expert support and advice is available on a 24/7 basis. In addition, where appropriate the national centre will empower patients to take a more pro-active role in managing their condition. The centre would become the location where all complex cases are monitored and where all those deemed suitable for surgery or other procedures such as Vagal Nerve Stimulation are assessed, prepared for surgery and provided with post surgery care.

The proposed NCE development aligns completely with current health service direction in that it;
• Concentrates expertise in a centre of sufficient capacity to allow in-depth experience and excellence to develop
• Uses smart technology to link this centre with clinicians in local hospitals, with GPs and with primary care teams, providing them with diagnostic and treatment support
• Thereby enables most people to be treated and monitored close to their homes while benefiting from national expertise
• Focuses the use of expensive resources on the most complex of cases
• Radically reduces unnecessary hospital admissions and reduces significantly the length of stay for those who do need admission
• Reduces and ultimately eliminates waiting times over a five year period.

Above all, it improves the quality of life for epilepsy patients and their families. Long waiting times to be seen initially, to be reviewed and to be assessed for surgery are collapsed into much shorter, more manageable (and understandable) time frames. Patients have a clearer sense of what lies ahead and within what time line. They have a greater sense of being in control of their lives.

Furthermore, this is achieved without additional expenditure. Indeed, there is the prospect of substantial savings to the public purse. The challenge is to re-direct current expenditure, much of which goes on unnecessary stays in hospital, to resource a facility dedicated to the provision of world class services for those patients epilepsy.