BC is a have-not province when it comes to the care and support provided to people living with epilepsy in BC and particularly within the adult epilepsy system. In fact, when compared with the care and support provided to people living with epilepsy in other provinces in Canada, it becomes clear that the already compromised population of adults living with epilepsy in BC, have become the casualties of a homegrown crisis, the epilepsy crisis in BC.
Check out our unbelievable side-by-side comparison to see for yourself the ways the BC and Alberta governments fund epilepsy in their respective provinces by clicking here or by seeing below for more details:
The Disparities – Adult Epilepsy Clinics:
In BC, there are two adult epilepsy clinics. One is located at The Gordon and Leslie Diamond Health Care Centre at Vancouver General Hospital in Vancouver; and the second is located at the Jim Pattison Outpatient Care and Surgery Centre at Surrey Memorial Hospital in Surrey. A disparity can be further seen by the fact that the two clinics in BC are both located in the Lower Mainland and are located only about 35 km away from each other.
In Alberta, there are three adult epilepsy clinics. One is located at Foothills Medical Centre in Calgary; the second is located at South Health Campus in Calgary; and the third is located at Kaye Edmonton Clinic in Edmonton. The three clinics in Alberta are located approximately 32 km away from each other (the two clinics in Calgary) and approximately 308 km away from each other (the one clinic in Edmonton).
There is a great disparity when comparing BC to Alberta in terms of adult epilepsy clinics as not only does Alberta have more clinics than BC, the clinics in BC are both located in the Lower Mainland, whereas the clinics in Alberta are located in two of the major city centres in the province, each serving a distinct geographical area in the province.
This shows the need for adult epilepsy clinics in the major city centres in BC, including Victoria (to serve people living with epilepsy in Vancouver Island); Kelowna (to serve people living with epilepsy in Interior BC); and Prince George (to serve people living with epilepsy in Northern BC).
The Disparities – Epilepsy Beds:
In BC, with a population of 5.1 million and over 50,000 people living with epilepsy in the province, there are four epilepsy beds, with all four beds in the adult epilepsy clinic in Vancouver. There are currently no epilepsy beds or seizure investigation unit at the epilepsy clinic in Surrey.
In Alberta, with a population of 4.4 million, with approximately 40,000 people living with epilepsy in the province, there are fifteen epilepsy beds, with four epilepsy beds at Foothills Medical Centre, two epilepsy beds at South Health Campus and nine epilepsy beds at Kaye Edmonton Centre.
There is a great disparity when comparing BC to Alberta in terms of epilepsy beds as not only does Alberta have more epilepsy beds than BC with a lower epilepsy population, there are also no epilepsy beds and no seizure investigation unit in one of the two epilepsy clinics in BC.
This shows the need for epilepsy beds and a seizure investigation unit at the Jim Pattison Outpatient Care and Surgery Centre at Surrey Memorial Hospital in Surrey and the need for a greater number of epilepsy beds at the adult epilepsy clinic in Vancouver.
The Disparities – Neuropsychologists and Neuropsychology Services:
In BC, there is no neuropsychologist funded through and/or attached to either adult epilepsy clinic nor are there any neuropsychology services provided to patients living with epilepsy within either adult epilepsy clinic. In fact, in 2019 the BC Ministry of Health cut funding for BC’s one and only neuropsychologist attached to the adult epilepsy clinic at Vancouver General Hospital.
In Alberta, there are neuropsychologists funded through and/or attached to all three adult epilepsy clinics and there are also neuropsychology services provided to patients living with epilepsy within all three adult epilepsy clinics. The adult epilepsy clinics in Calgary have 2 adult neuropsychologists and the adult epilepsy clinic in Edmonton provides neuropsychology services to its patients.
This shows the need for the Ministry of Health to fund neuropsychologists and neuropsychology services within both adult epilepsy clinics in BC.
The Disparities – Epilepsy Medication Coverage:
BC is the only province in Western Canada to not provide coverage of Brivlera, a medication used in the treatment of drug-resistant focal epilepsy, despite the fact that, according to a Drug Coverage Decision for B.C. PharmaCare Report by the BC Ministry of Health, although the Common Drug Review (CDR) recommended that Brivlera be covered in BC as it is in all other Canadian provinces, coverage was not awarded.
This means that people living with epilepsy in BC, who require this medication must pay out-of-pocket for it, creating immense financial burdens. Many people may need to choose between purchasing their medication for the month or being able to afford groceries. This causes people living with epilepsy who cannot afford to pay out-of-pocket to either have uncontrollable seizures and afford food in order to eat or take their medication and continue to stay hungry. Either way, this leads to many people spiralling into depression OR feeling the need to leave BC and move to other provinces where their epilepsy medication is covered, such as Alberta.
The Why – Epilepsy and the Effect on Mental Health and Well-Being:
Some people may be asking the question, but why is the above important for adults living with epilepsy in BC? The answer is that all of the above plays an immense role in the mental health and well-being of adults living with epilepsy.
It has been found that epilepsy has an effect on mental health and well-being in terms of general mental health and well-being, suicide and stigma. Also, research has found that approximately 40% of epilepsy specialists (ex. neurologists and epileptologists) do not feel comfortable initiating treatment for depression, showcasing the need for neuropsychologists and neuropsychological services.
In terms of general mental health, research has found that 1 in every 3 people living with epilepsy will be affected by mental health issues, such as depression and/or anxiety. In fact, for many people living with epilepsy, it is the devastating emotional, social and psychological stresses of epilepsy – not just the challenges of seizure control – that often leave the deepest scars. This can lead to a number of negative factors for people living with epilepsy, including social isolation, depression, anxiety, family breakdown, job loss and living in poverty, among many others.
One way that problems with mental health and well-being may present itself in adults living with epilepsy is through suicide. Research has found that people with epilepsy have a two to four times increased mortality rate than the general population and this excess mortality rate can only be partially explained by factors such as Sudden Unexpected Death in Epilepsy (SUDEP) and/or deaths involving seizures (ex. drowning, car accidents, head trauma), etc. and things like suicide must be taken into account. In fact, studies have found a 3 to 5 times increased risk of suicide in people living with epilepsy than in the general population.
Another way that problems with mental health and well-being may present itself in adults living with epilepsy is through stigma. In fact, despite being one of the most common neurological conditions, epilepsy has the least recognition, education and awareness in society. This can lead to increased stigma towards people living with epilepsy, which has a severe, negative and debilitating impact on their mental health and well-being and overall quality of life.
All of the above factors showcase the importance of proper care for people living with epilepsy within the adult epilepsy system in BC, including adult epilepsy clinics, adult epilepsy beds, neuropsychologists and coverage of epilepsy medication.
BC requires increased capacity and infrastructure within the two adult epilepsy clinics in Vancouver and Surrey and also requires three additional adult epilepsy clinics in Victoria (Vancouver Island), Kelowna (Interior BC) and Prince George (Northern BC).
If you would like to help us decrease and remove the disparities in epilepsy care and funding in Western Canada, please consider signing our petition here and learning how to write a letter to your MLA on the subject here.