FND Hope UK are really pleased to announce we have secured a date for our inaugural FND Seneed Awareness Day.
We’ll be hosting our event on 21st November 2023 to raise awareness of FND and to discuss the difficulties our community faces in getting treatment. We would like to thank Sarah Murphy MS for sponsoring this event, following our meeting with her this year.
Do you live in Wales? If so, you can help! To ensure that we have as many Members of the Senedd as possible attending our drop in event, we would like to ask you to contact your Senedd representatives and ask them to come along to learn more.
Locate your Senedd members
1)Â Â Click here
2)Â Â Add your postcode and press the search button
3)Â Â You will be shown five members of the Senedd. You have one constituency representative, and four regional representatives
4)Â Â You can click on their pictures and their email addresses will then be shown on the page you are taken to
5)Â Â You can then write to one, two or even all five!
6)  Please make sure you include your Name, full address including Postcode and your telephone number. (Strict protocols prevent Members of the Senedd from dealing with correspondence from another member’s constituency or region)
For ease, we have drafted a letter you can use if you wish. Please copy and paste the below into your email, or send as a letter in the post:
Dear [INSERT SENEDD MEMBER NAME HERE],
As your constituent and someone impacted by functional neurological disorder (FND), I am writing to request your attendance at FND Hope UK’s inaugural FND Seneed Awareness Day event on 21st November 2023, Dining Room 1, First Floor Ty Hywel, 12 – 2pm.
FND is a problem with the functioning of the nervous system and how the brain and body send and receive signals. People living with FND experience life-changing symptoms, similar to Parkinson’s Disease and long-term disability comparable to that of MS. Common symptoms include seizures, paralysis, speech difficulties and motor dysfunction. Estimates suggest there are between 50,000 and 100,000 adults and young people living with FND in the UK¹
Those with FND face multiple challenges when trying to access effective treatment and care. Yet there are no specific NICE guidelines for FND to address either diagnosis or treatment, impacting provision of care. FND Hope UK recently surveyed, through a Freedom of Information request, all of the Clinical Commissioning Groups and Health Boards in the UK as to their current provision of multidisciplinary rehabilitation for people with FND. We found that:
5 out of 7 Wales Health Boards had no specific agreement to treat FND
By attending FND Hope UK’s inaugural FND Seneed Awareness Day, you can learn more about their work towards a dedicated FND care pathway at every UK neuroscience centre, hear directly from people living with FND about the impact the condition has, and learn about current and future clinical research to improve patient outcomes.
The drop-in lunch event will run from 12-2pm on 21st November 2023 in the Dining Room 1, First Floor Ty Hywel. Lunch will be provided.
I look forward to hearing from you and do hope you will be able to attend this important event. Please RSVP to fndhopeuk@fndhope.org.
[INSERT YOUR NAME HERE]
