‘Open the epilepsy units without delay’
Q: This week, we learned that two units, known as epilepsy monitoring units (EMUs), remain closed because of lack of funds to staff them. What is the significance of these units in the treatment of epilepsy?
A: These units are crucial in the treatment of patients with severe disabling epilepsy for a number of reasons: They assist in helping to make a definitive diagnosis where uncertainty may exist, and they allow monitoring of a patient’s brain activity in a manner that helps us decide on whether a person might benefit from brain surgery.
Q: How effective is surgery in controlling epilepsy?
A: Where surgery is successful, the number of seizures may be reduced from daily attacks to none. Cure rates after surgery are typically between 50% and 90%. Even if seizures are not abolished, patients generally benefit greatly from surgery on many fronts. When seizures stop, people are rejuvenated.
Q: How do you decide who is suitable for surgery?
A: The people we select for surgery after monitoring — and monitoring in these units would be around the clock for one to two weeks — are generally not responding to medication. We monitor them to determine what part of the brain the seizures are occurring in and to prove, with reasonable certainty, that if you remove, by an operation, this particular part of the brain, that it won’t harm the person, eg, cause loss of vision, speech, or paralysis. Nationally, in a country where 40,000 people are treated for epilepsy, approximately 10% of people (ie, 4,000) could benefit from brain surgery. The staff at CUH and Beaumont Hospital work as an integrated team in making decisions about epilepsy surgery, which is performed in Beaumont Hospital. Approximately 80 patients per year undergo epilepsy surgery in Ireland, where a part of the brain that is causing the seizures is surgically removed. This work cannot be done if the epilepsy units in CUH and Beaumont Hospital remain closed.
Q: Where does this monitoring take place?
A: There are only two places in Ireland where people with epilepsy can undergo monitoring in a safe environment on a 24/7 basis: The two-bed EMU at CUH and the four-bed EMU at Beaumont, both of which have been refurbished and are ready for use. Neither are open, despite the fact that CUH and Beaumont are flagship centres for the treatment of people with epilepsy. Under the HSE’s national epilepsy clinical care programme, both sites were earmarked for these state-of-the-art EMUs.
Q: In what way are they state of the art?
A: The new units are custom-designed with modern equipment and appropriate safety measures in place. They will have round-the-clock, highly trained nurses at the bedside and cameras running all of the time recording patients’ movements. We don’t have that level of service at the moment. CUH and Beaumont worked collaboratively on the design of the EMUs.
Q: If the EMUs were open and fulfilling their role of assisting in deciding who was suitable for surgery, how many of your patients do you think would benefit?
A: I have at least 10 patients who would benefit from surgery. I am confident their seizures would be reduced, if not stopped. However, I have 90 people with epilepsy on the waiting list for monitoring at CUH. There are another 180 on the Beaumont waiting list.
Q: What impact would successful surgery have on some of these people’s lives?
A: Many of these are people who can’t work or drive, who have mental health problems such as depression, anxiety, and memory difficulties, and who have relationship difficulties. Many suffer from social isolation and really struggle with the stigma attached to their condition. As I said, best case scenario, surgery could reduce seizures from 10 a month to none.
Q: As a clinician, what is your own view of the impact of the failure to open the EMUs?
A: As advocates for people with epilepsy, we clinicians feel that the delay in opening the EMUs is an example of where the moratorium on staff recruitment and replacement, as a cost containment measure, is directly leading to patient distress. While it can be hard to quantify the impact of a reduction in some services, in the case of epilepsy the impact is directly observable.
Q: As long as the units remain closed, what options are available to clinicians in terms of monitoring patients?
A: If we can’t treat our patients here, then the onus is on us to send them abroad. This costs in the region of €20,000 per person. In the last three years, two of my patients have died of Sudep (sudden unexpected death in epilepsy), one of whom, potentially, may have benefited from monitoring in a 24/7 EMU.
Q: What should be done next?
A: Cork University Hospital and Beaumont Hospital should be commended for developing and installing these national epilepsy monitoring units. When opened they will provide immeasurable benefit to people with epilepsy in Ireland. The EMUs need to be opened without delay. This can only be done by exempting the staff necessary to run the units from the current moratorium on recruitment in the HSE.
