We have published new research exploring clinical epilepsy services in Scotland. This blog outlines the research report, highlighting some of the core findings.
Across Scotland, people with epilepsy are facing a postcode lottery of specialist care.
Epilepsy is one of the most common neurological conditions, with an estimated one in 97 people having epilepsy in Scotland, roughly 55,000 people.
However, despite this, we continue to see limited and variable care and support available to people living with the condition.
In 2021, we conducted a mapping exercise seeking to gather an accurate understanding of clinical epilepsy support across Scotland.
We asked every health board in Scotland questions regarding specialist staff numbers and waiting times.
The responses were stark, evidencing the need for an improved standard of epilepsy care and support across the country.
With the changing nature of the COVID-19 pandemic, we decided to conduct a similar exercise this year, seeking to understand if and how things had changed.
The key findings
We know, and we have known for a long time, that data recording on epilepsy in Scotland is poor. There is no up to date information on the epilepsy population, in terms of the number of people or where they are located in Scotland.
All current estimates are based on out-of-date figures. It is therefore vital more up to date data is gathered to provide an accurate picture.
Better information would help ensure adequate specialist care and support is available to the epilepsy population, as and when they need it.
Neurology and Diagnostic Services
When comparing this year’s research to that of 2021, it soon became evident that while some waiting times have reduced, others have in fact, increased.
Such variabilities in waiting times persist across the country, with, for example, some adults waiting up to 36 weeks for a routine neurologist appointment in one health board, while only four weeks in another.
Similar disparity can be seen in diagnostic services, with routine EEGs ranging from waiting times of six weeks to 16 weeks, and urgent from less than two days to eight weeks.
Particularly concerning are the extensive waiting times recorded for neuropsychology support.
Epilepsy can have a significant impact on a person’s mental health and wellbeing.
Depression and anxiety are higher amongst people with epilepsy compared to the general population.
The pandemic has further impacted the epilepsy community, with our 2021 COVID-19 Impact Report revealing 80% of respondents felt the pandemic had an impact on their mental health and wellbeing.
The responses revealed extensive waiting times, with children and young people in some health boards waiting over a year for access to these specialist services.
Similarly, some adults face waiting times as high as 53 weeks in one health board, compared to only six weeks in another. It is vital people with epilepsy have timely access to specialist mental health and neuropsychology support.
Epilepsy Specialist Nurses (ESNs)
ESNs provide a vital line of support for people with epilepsy. Through advice and support, they promote a greater understanding of epilepsy, helping people with epilepsy and their carers to better manage their condition.
However, since 2021, we have seen a 15% reduction in ESN posts.
Not every person with epilepsy in Scotland has access to ESN support, like adults under the care of NHS Borders and NHS Western Isles.
Furthermore, the majority of ESNs are facing consistently high caseloads. For example, the full time equivalent of one paediatric ESN in NHS Lothian is responsible for providing support to an estimated 660 paediatric patients.
Moreover, in NHS Grampian, who also provide this service for NHS Shetland and NHS Orkney, every single full time equivalent ESN is responsible for the care of 3,228 adults.
The impact of these excessive caseloads becomes evident when looking at the extensive waiting times some people are facing for ESN support.
Based on our findings, we have made three recommendations to help improve the support available for people with epilepsy in Scotland.
These recommendations, outlined fully in the report, are as follows:
- Increase the number of Epilepsy Specialist Nurses.
- Improve prevalence data recording of epilepsy.
- Improve neuropsychology services across Scotland.
You can read the full report here.