After 3 years of trying to organise the Parliament Event, Wednesday 8th February finally happened. Although we were not sure upon arriving at Westminster that it would, as we were advised that President Zelenskyy was also due to address the Houses of Parliament in Westminster Hall in the afternoon. However, luck was on our side, and we were transferred to a different room to hold our event. Unfortunately, as rooms were rescheduled, our initial 30 minutes of presentations did not go ahead, but we did see 22 MPs come and talk to us individually about the issues our member’s experience in trying to get a diagnosis and treatment for FND.

We want to say a huge thank you to Ben Lake MP for sponsoring our event and to the following MPs for attending:

It was great to see that all the MPs in attendance, signed our declaration for

1. A dedicated FND care pathway at every UK neuroscience centre, which reflects the National Neurosciences Advisory Group (NNAG) optimal care pathway. More details of the pathway are a little further down in our newsletter.
2. The development of FND guidelines by both NICE and SIGN, to ensure consistent care is available across the country.
3. Increased training in FND for healthcare professionals, to raise awareness of FND signs and symptoms and ultimately improve diagnosis.

Abigail Bishop-Laggett (Trustee), Dr Chris Symeon (Trustee and Neuropsychiatrist, Wolfson Rehabilitation, Queen Mary’s), Cindy Smulders (Chair), Rachel Sutton and Mr Sutton (Patient Representatives), Alison Newland (Volunteer Events Manager), Professor Mark Edwards (Professor of Neurology, Kings College Hospital), Callum Alexander (Volunteer Support Worker), Georgina Carr (CEO Neurological Alliance), Emily Newland, Clare Nicholson (Occupational Therapist, The National Hospital For Neurology and Neurosurgery), Dr Glenn Nielsen (Neurophysiotherapist, St Georges University Hospital).

Many thanks to the Medical and Allied Health professionals and volunteers who attended, we asked them to provide a reflection on the day.

Cindy
Having our say to MP’s at Westminster felt like a real turning point for all those living with, caring for or parenting loved ones with an FND diagnosis. The MP’s who attended were engaged, understanding and sincere. The whole day made me feel very proud to be part of FND Hope UK. The medical professionals supporting us on the day willingly gave up their time to give the clinical perspective which was so important for an audience of MP’s. It’s a really strong start to getting an optimum care pathway in place within the healthcare system so that a diagnosis of FND does not mean a leaflet and a website. Thank you to all who gave their time, energy and passion to this cause

Professor Mark Edwards
The FND event in Parliament was an amazing opportunity to talk to MPs about FND and to see them go from not having any significant knowledge or understanding of the condition to realising how common, disabling and important it is. Then, and even more importantly, to see their disbelief and even anger that such a common condition has no established pathway for accessing expert assessment and treatment in the NHS despite the obvious benefits this would have for people with FND and their loved ones. It felt like a real step forward to address the inequity of treatment for people with FND and to finally give a public voice to all those affected by the condition. For me the feeling I walked away with was hope, that working together we have a chance to really change the situation for people with FND now and into the future.

Callum Alexander
For me, the event added a certain gravitas to our objectives. We saw its immediate impact across the national and regional media, who were very interested to pursue stories about FND and our parliamentary event. I think this wider awareness generated as a result has been so important and will only continue to grow with the support of the MPs who visited us. They showed genuine interest and compassion, which gave me a great sense of validity to our work. I really felt that we were truly advocating on behalf of the FND community. The excellent collaboration between the Medical Experts, Trustees and Volunteers gave the MPs who attended a really in depth understanding of the condition and its wider impact from multiple perspectives. This demonstration of teamwork gave me even greater hope that we can and will continue to pursue and achieve our long-term mission and objectives.

Alison Newland
Yesterday’s event was wonderful. We had a steady flow of MPs, all very interested to hear more about FND. They wanted to understand from a medical perspective but also have an idea of the impact FND has on the lives of those diagnosed with the condition. It was a huge encouragement to me personally to see genuine interest, empathy and commitment from those who have the power to potentially bring about change for us all.

Rachel Sutton
It was an honour to be invited to such a significant event as the inaugural FND Parliamentary Awareness Day on February the 8th 2023. To be in the same room as people such as Dawn and her team at FND Hope UK, who work tirelessly and passionately to help improve the lives of those with FND, was a real inspiration. In addition, to be able to share experiences with those walking a similar FND path was incredibly helpful to me as it was the first time I had met anyone else with FND. So too, it was an excellent opportunity to talk to those from the medical community specialising in FND. This important meeting provided an opportunity to bring together key people, experiences and expertise in a parliamentary setting, and hopefully to gain the political traction needed to take the awareness, understanding and treatment of FND to the next level. Being able to promote the FND Adult Care Pathway to MPs, which Professor Edwards so fervently advocates, offered great potential to the cause. Explaining how FND has impacted my life, and the lives of those close to me, to various MPs made me feel valuable and gave me a strong sense of self- worth – something I have lacked for some time due to the impact this disorder has had on my identity. Ultimately, as a community, we cannot underestimate the potential power that events such as these could hold. Therefore, we must continue to maintain political pressure in order to see a future where FND is diagnosed both early and correctly, treatment is put in place within an appropriate timescale, and people are given the opportunity to make a recovery that will enable them to live rich, purposeful and fulfilled lives.

Dr Glenn Nielsen
The MPs were very interested and asked really great questions. As is often the case, many started by saying “I have never heard of FND before”, but as we started talking they realised they have a friend or family member affected. The FND community who attended shared powerful stories of their lived experience.
The statistics from the FND Hope surveys spoke volumes and I hope they heard the message that: Within the NHS there are services available for people with FND, and a growing evidence base for efficacy, but most people cannot access this treatment due to underfunding. If we address the issue head on, we may be able to improve the lives of many people and potentially save the NHS a lot of money in the long term!
It really feels like there is growing momentum behind this movement, and we have only just started!

With special thanks to Mike Rumsey from Rumsey Films and Nikki Powell from MK Photography for taking the videos and photos so we were able to share the parliament event with you.