A man from Edinburgh who suffers from epilepsy is joining the call to ask for more specialist nurses in Scotland admitting they are "essential" in helping those who suffer with the condition.
In Scotland alone, epilepsy is said to affect one in 97 which is the equivalent to roughly 55,000 people.
It comes as a new report highlighted just how crucial epilepsy specialist nurses (ESN) are with charities asking for more to be done to deliver support across the country.
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Epilepsy Consortium Scotland (ECS), the Scottish national umbrella body, has warned of significant workloads facing specialist nurses with the new report exploring the experiences of patients and nurses. Many of these people suffering with epilepsy describe the support as their "lifeline" adding they have had a positive impact on their mental wellbeing.
Despite their vital role, nurses are said to be feeling that their current workloads are “potentially unmanageable” feeling as though they don't have "control of their work”. And now according to Epilepsy Consortium Scotland, participants described large caseloads of up to 3,500 patients for one or two nurses highlighting a five-month waiting list for clinics.
The report also warns that people living in rural areas may face additional barriers and because of this, the ECS are now calling for an increase of ESNs across Scotland to ensure everyone, no matter their postcode, can access this vital support in a timely manner.
Dave McTernan from Edinburgh was diagnosed with epilepsy in 1984 at the age of 17 and at the time didn't know much about the condition. Now 55, he has opened up about what this means for him and his day-to-day life.
Admitting the diagnosis was a huge shock he explained: "After various admin jobs, I ended up in hospitality and worked my way up to bar manager. During these years seizures would still appear, although mostly nocturnal.
I had learned about my main triggers which are alcohol, stress, and tiredness, and adapted my life to manage these. I eventually left hospitality and pursued my new dream career as a support worker. I worked with adults that had various needs and loved my career.
“I made it to senior support worker until approximately ten years ago my seizures increased in quantity, and I began to have them most days. I eventually had to stop working altogether and it seemed that epilepsy yet again had changed my life.
“My epilepsy has proven to be med resistant - and every day is a lottery. I get no warning when a seizure is coming, and this causes a huge amount of anxiety. I don't often go out alone and when I go it's very local to home; I can't use a bath for fear of drowning; and can no longer cook on a conventional cooker.
“There are some days that I feel that epilepsy is winning, however I grab the good days and have a fulfilled and happy life."
Speaking about ESNs he added: “In my experience, ESNs are an essential part of our epilepsy treatment. My ESN has literally been a lifesaver and not only was able to give me great information about epilepsy and in particular my own seizures, and has provided an all-round care package.
“Through my ESN I have been given access to mental health services through a referral to a neuropsychologist and had my home made safer due to an alarm being fitted that gives me care from a call service. Knowing that there is someone only a phone call away who understands and has the knowledge and skills to help is comforting, and helps to remove a lot of anxiety around living with this condition.”
One Epilepsy Specialist Nurse working in NHS Scotland explained: “It's alarming the effect Covid has had on our patients’ mental health and their ability to access primary care services. Clinical nurse specialists have attempted to prioritise their patients’ safety under extremely demanding circumstances.
“We have striven to maintain contact and embraced new ways of practice to accommodate this - perhaps to the detriment of our own workload, which continues to increase, coupled with supporting the staff shortages in the hospitals.
“Our services are continually stretched beyond our control. This has been raised and should be addressed.”
Lesslie Young, chief executive of Epilepsy Scotland and founder of Epilepsy Consortium Scotland added: “Epilepsy Specialist Nurses provide a lifeline service for people with epilepsy, and this report highlights the incredible contribution they make.
“Some participants described their ESN as providing a bridge between themselves and their neurologist. However, they also reported difficulty initially accessing ESN support, and while they expressed awareness of how stretched current services are, they noted how crucial this is to their care.
“Meanwhile, nurses said their current workloads feel potentially unmanageable and they regularly work beyond their contracted hours. They also said this was already an issue prior to the pandemic, and has continued to increase at pace over the past two years.
“ESNs play a vital role, and we would like to see numbers increased so people with epilepsy in every part of Scotland can access their support.
In response to the call for more speaclist nurses, a Scottish Government spokesperson told Edinburgh Live: "“We welcome this new report commissioned by the Epilepsy Consortium Scotland and will consider its findings as we continue to ensure that all people living in Scotland with epilepsy are able to access the best possible care and support.
“We recognise the invaluable care provided by Scotland’s epilepsy specialist nurses and commend their commitment to maintaining high levels of patient contact and support during the pandemic.
“Through our National Workforce Strategy for Health and Social Care, and NHS Recovery Plan, we are investing in NHS staff so that they have the right skill mix and career progression opportunities.
“Our Neurological Care and Support Framework 2020-25 aims to improve the provision of co-ordinated health and social care and support, developing sustainable workforce models and ensuring high standards of person-centred care for people with neurological conditions.
“Through the Framework, we have invested nearly £325,000 so far in projects which specifically improve the health and wellbeing of people with epilepsy in Scotland."
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