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Only Half of UK Health Boards are Catering for People with Functional Neurological Disorder

Only Half of UK Health Boards are Catering for People with Functional Neurological Disorder

A patient attending physiotherapy

FND Hope UK

4 min read Partner content

A recent Freedom of Information request by the charity FND Hope UK has found that half of UK health boards have no specific agreement to treat Functional Neurological Disorder (FND). This means that people living with FND may not have access to the care and treatment they need, simply because of where they live. FND Hope UK write on why improving access to treatment should be a priority

Functional Neurological Disorder (FND) is estimated to currently impact between 50,000 and 100,0001 adults and up to 20,000 young adults under the age of 16 in the UK2. Yet a recent Freedom of Information request by the charity FND Hope UK has revealed that 50% of UK health boards have no specific agreement to treat FND.  

The Freedom of Information request sought to collect data from all Clinical Commissioning Groups and Health Boards in the UK on their current provision of treatment services for people with FND, as well as if they had active plans for developing or expanding services.

The survey also found that: 

  • Almost 10% of Health Boards say that they do not accept referrals for FND treatment
  • Between 14% (England) and 43% (Wales) of services said that they did not accept physiotherapy referrals or provide physio for FND. 
  • 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

This means that people living with FND may not have access to the care and treatment they need, because of where they live.

As part of their campaign to reduce this worrying gap in services, FND Hope UK, part of the first and only global patient-led charity for people with FND, held the first ever parliamentary awareness day for FND on Wednesday 8th February in Parliament. MPs from across the UK attended the event to learn more about what FND is and what they can do to support their constituents living with the condition.

The charity is now hoping to build on this momentum by setting up an All-Party Parliamentary Group for FND, to ensure political action to support people living with FND continues beyond this important event.

FND is 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 can impact anyone and has multiple causes including physical injury and psychological or other trauma to the brain or body. 

FND patients live with life-changing symptoms, similar to Parkinson’s Disease and long-term disability comparable to that with MS1,2,3,4. Historically it has been a marginalised illness, often falling down the gap between the artificial divide between neurology and psychiatry.

Callum Alexander, a peer support worker for FND Hope UK who lives with FND himself shared his story: “Since my diagnosis of FND in 2020 accessing treatment has been a lottery. I have faced multiple postponements for neurology consultations and outright cancellations due to a lack of staffing. This has meant continual delays and referrals to different NHS Trusts outside of my county. 

I know that my experience is in no way unique and sadly has been one of the better examples. There are dedicated experts who provide excellent care. The issue is they are severely limited in number and overwhelmed by demand for their services.”

For more information, please contact fndhopeuk@fndhope.org.


1 How common is FND - https://www.neurosymptoms.org/en/faq/how-common-is-fnd/

2 Raper J, Currigan V, Fothergill S, et al - Long-term outcomes of functional neurological disorder in children doi:10.1136/archdischild-2018-316519

3 Sharpe M, Stone J, Hibberd C, et al Neurology out-patients with symptoms unexplained by disease: illness beliefs and financial benefits predict 1-year outcome

Gelauff J, Stone J, Edwards M, Carson A. The prognosis of functional (psychogenic) motor symptoms: a systematic review. J Neurol Neurosurg Psychiatry.

 

About FND Hope UK

FND Hope UK is part of the first and only global patient-led charity for people with Functional Neurological Disorder. Originating as a grassroots campaign, it uncovers the hidden world of FND and empowers those affected to live their best possible life. If you would like to speak to someone living with FND or hear from specialists on our UK Medical Expert Committee, working in Neurology, Neuropsychiatry, Psychiatry, Clinical Psychology, Occupational Therapy and Physiotherapy, please get in touch.

 

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