World Brain Day 2021 (July 22nd)

 

World Brain Day takes place this year on July 22nd and our theme is Looking Beyond COVID-19: The Future of Neurological Care.

NAI will be hosting a FREE webinar on the day. To register for this event and to find out what is happening on the day, keep an eye on all of our social media pages and both www.nai.ie and Love Your Brain where we’ll be publishing details of our plans very soon.

On World Brain Day, NAI will launch a report which examines the experience of online service provision within neurological care services in response to COVID-19

This publication brings together a series of investigations and discussions with stakeholders to reflect the learning involved and to draw potential lessons for the delivery of neurological care going forward. March 2020 saw the beginning of a rapid and unprecedented move to deliver online services and supports across neurological care services.

Within a very short timeframe, people with neurological conditions were accessing hospital appointments, physiotherapy sessions, support groups and information through their laptop or smartphone with the entire range of services, both in hospital and community, having to adapt rapidly to the digital environment. 

ONE WORD Campaign

Share ONE WORD that sums up how you would like your future neurology care to change after COVID-19, using the hashtag #EMBRACECHANGE 

All WORDS  shared will be launched as part of the NAI World Brain Day webinar .Let's start sharing, let's look to the future and let's embrace change.

Why not join the conversation at #WBD2021 and #EMBRACECHANGE

 

Here at NAI, we have launched a new survey to examine the impact of COVID-19 on access to services for people with neurological conditions.
Over one year on from our first COVID-19 survey, what has changed and what are your concerns and hopes for the future?
The survey can be found HERE  and only takes a few minutes to complete.

The closing date is Friday 25th June.

 

In June 2020 our members Irish Hospice Foundation with the support of the HSE, launched our National Bereavement Support Line. A freephone support line operating Monday-Friday, 10am-1pm. Freephone 1800 80 70 77.
Now, 1 year on they dealt with over 1500 calls. Their volunteers are there to help, listen and support any adult who has been impacted by bereavement  either during the COVID-19 pandemic or a previous death.  They have had calls from widows and widowers, adult children who's parents have died, parents who's children have died as well as healthcare professionals (and others) who have been dealing with more death and dying in their places of work. 
They provide a confidential space for people to speak about their experience or to ask questions relating to the death of someone they know.  They listen to what a person says about what has happened.  They hope to provide comfort and emotional support and any information that might help the caller, including additional resources and other practical supports. 

 

May was Huntington's Disease Awareness month. The Huntington's UK and Ireland Alliance (of which HDAI is a member) ran a HD Family Matters campaign to increase understanding of the unique impact of the disease on families.
Families across the UK and Ireland contributed by sharing their 'living history' and family stories with some families participating in short films to increase awareness. They are very grateful for the support they received from the wider community, umbrella organisations and from health care professionals and researchers working with Huntington's Disease.
See HD Family Matters and Huntingtons Disease Associations of Ireland for further information.

"Sincere thanks to the NAI for helping to increase understanding of Huntington's Disease by sharing facts about the disease on social media throughout the month of May"

The Migraine Association of Ireland’s key focus for June 2021 was on ‘Migraine Access to Care in Ireland’ compared to neighbouring countries. On June 16^th they held a webinar #TogetherTalks in conjunction with the European Migraine and Headache Association (EMHA) to bring these issues to the forefront with Jeff Smith M.D. 

Jeff is a physician by training and has worked for pharmaceutical companies for the last thirty years, most recently with Alder Biopharmaceuticals who developed a CGRP medication. He is now a Board member of Migraine Association of Ireland (MAI.) This is just the start of MAI advocating for better care in Ireland.

 

NAI members Polio Survivors Ireland will hold their Conference and AGM 2021, via Zoom, on Wednesday 30th June. Building on last year's virtual AGM, this year they have a number of speakers, along with their Annual General Meeting.
These speakers include Paul Gallier, Age & Opportunity; Laura Dowling, National Advocacy Service; Georgina Cruise, Patient Advocacy Service, Daragh Cassidy, Bonkers.ie; Zaynab Salman, TCD Cold Study and Dr Diarmuid Quinlan, Irish College of General Practitioners. 
The event opens at 1:30pm for a 2pm sharp start and anyone wishing to attend should contact Emma do@ppsg.ie to register.
 

June is Aphasia Awareness Month Aphasia is a post-stroke language difficulty which impairs the individual's ability to understand what they hear, read and express themselves through verbal or written communication. For our members at Aphasia Ireland for the month of June they have recorded a video describing what a person with aphasia would like people to know about aphasia.
They have planned a music therapy workshop with one of the speech and language therapists that they work with, which can be viewed HERE