Recently we shared a survey from our colleagues in the Neurological Alliance of Ireland (NAI) regarding the impact that COVID19 is having on those with neurological conditions - including those with epilepsy.
With over 680 respondents, the key highlights of the survey are listed below:
- 26% of respondents had significant challenges in accessing vital care for their neurological condition, with cancellation of neurology appointments and diagnostic testing, delays in infusion/injection treatments and problems getting prescriptions for medication.
- While the main source of general information on COVID-19 was the HSE website, patients listed voluntary organisations as the single most important source of condition-specific information on COVID-19 e.g. any potential risks associated with their condition/treatment.
- 21% did not have sufficient information on what to do if their neurological condition deteriorates at this time
- One third of patients reported a significant impact on family life/relationships and on emotional wellbeing.
- One fifth were significantly impacted financially as a direct result of COVID-19
- Over half of family carers reported a significant impact of the lockdown on family life/ relationships and emotional wellbeing, one fifth were significantly impacted financially. 38% of carers reported a significantly increased burden of care due to being unable to receive help from family members/services.
The full survey results can be found by visiting the NAI website.
Commenting on the results of the survey, Executive Director of the NAI, Mags Rogers said," The survey makes clear what we are already hearing from neurological charities, that people with neurological conditions are experiencing huge challenges at this time. We’ve seen from this survey the overwhelming reliance on charities to provide advice, information and direct support tailored to specific neurological conditions. A poll taken last week across ten neurological patient organisations shows losses of one third to one half of projected income from fundraising for 2020. Organisations simply won’t be able to sustain current levels of service provision at a time when it is most needed. The Government has to take significant action to ensure charities can continue to support the most vulnerable through this crisis and beyond”.
We can echo much of what the NAI has reported in their survey findings. Demands on one to one contacts with our team have increased throughout this period and we are proud to have been a vital source of support to people with epilepsy and their families throughout this pandemic via the work of our Community Resource Officers. However, our capacity to fundraise for our work has been decimated. As highlighted in our recent 'Use of Funds' statement on our website, in "normal" times we raised just enough income to meet the cost of providing our services for people with epilepsy and their families. As a direct result of COVID19, we are forecasting that our income will be reduced by almost €400k - or 50%.
For more on COVID19 & Epilepsy and additional supports which may help at this time, visit the COVID-19 and Epilepsy section of our website.