Drop-in: FND Awareness
/Alan Brown MP for Kilmarnock and Loudoun joined FND Hope UK’s inaugural Parliamentary Awareness Day on Wednesday, to discuss the action needed to deliver better care and support for those living with FND in the UK.
FND is a neuropsychiatric condition estimated to currently impacted between 50,000 and 100,000¹ adults and up to 20,000 young adults under the age of 16 in the UK². The condition is characterised by a problem with the functioning of the nervous system and how the brain and body send and receive signals. The disruption to the signals is like letters being sent to the wrong address, despite having the correct label.
FND patients live with life-changing symptoms, similar to Parkinson’s Disease and long-term disability comparable to that with MS³⁴⁵⁶. Historically it has been a marginalised illness, often falling down the gap between the artificial divide between neurology and psychiatry.
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. The charity found that 50% of UK health boards had no specific agreement to treat FND.
This means that people living with FND may not have access to the care and treatment they need, because of where they live.
FND Hope UK held the inaugural Parliamentary Awareness Day to highlight these issues and discuss what can be done to better support the FND community with Members of Parliament.
The MP also signed up to the charity’s declaration, committing to support steps towards:
1. A dedicated FND care pathway at every UK neuroscience centre, which reflects the National Neurosciences Advisory Group (NNAG) optimal care pathway
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
Attending the inaugural Parliamentary Awareness Day, Mr Brown said:
“I am delighted to have learnt more about FND Hope UK’s work towards a dedicated FND care pathway at every UK neuroscience centre and have the opportunity to hear directly from people living with FND about the impact the condition has.
“I was staggered to hear it affects up to 100,000 adults and 20,000 young adults in the UK. Those affected can experience life-changing symptoms similar to Parkinson’s Disease and long-term disability comparable to that of MS.
“When I shared this on Facebook, a constituent got in touch to say that she has been diagnosed with FND and it meant a lot to her that this drop in was taking place. It just goes to show how much this really means to so many people - we must do everything we can to play our part and raise awareness.”
