FND Hope UK are really pleased to announce we have secured a date for our inaugural parliamentary event on the 21st September to raise awareness of FND and to discuss the difficulties our community faces in getting treatment.
We would like to thank Ben Lake MP for sponsoring this event, following our meeting with him last year.
To ensure that we have as many MPs as possible attending our drop in event, we would like to ask you to contact your MP and ask them to come along to learn more.
Locate your MP
- Click on this link: https://members.parliament.uk/FindYourMP
- Add your Postcode and press search
- The email address will be shown
Sample Letter/Email
We have drafted a letter for you, please copy and paste the below into your email or letter.
Dear XX,
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 Parliamentary Awareness Day event on 21st September 2022, 10-11.30am, in the Jubilee Room.
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. It is the second most frequent reason for a neurology outpatient appointment and impacts up to 100,000 adults and 20,000 young adults in the UK.
Those with FND face multiple challenges when trying to access effective treatment and care. Yet there are no specific NICE or SIGN 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:
- 50% of UK health boards/CCGs had no specific agreement to treat FND and a shocking 9% said that they did not accept referrals for treatment.
- Only 35% said they had plans to improve their services for people with FND and only 35% said they were potentially interested in accessing further education or support to improve services.
By attending FND Hope UK’s Parliamentary 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 event will run from 10-11.30am on 21st September in the Jubilee Room, opening with short presentations from FND Hope UK Executive Director Dawn Golder, FND expert Professor Mark Edwards and Alison Newland, our community representative from 10–10.30am. This will be followed by a drop-in session from 10.30-11.30am where you can join at your leisure to talk to experts and volunteers from FND Hope UK.
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.
XX NAME XX
Thank you, we are hoping to record the session, so that you may watch this at a later date. We look forward to updating you later on in September.
Please note that this event could be cancelled at short notice, if this happens, we will let you know.
