Many thanks for publishing the article last week on Functional Neurological Disorder (FND). I appreciate your help.
We have been amazed at the uptake of tickets for this county wide awareness raising event, with over 100 people registering in the first four days of them becoming available!
Patients with FND represent up to one third of outpatient neurology clinic attendances, and five to ten per cent of new consultations. FND is the second most common reason to see a neurologist after headache.
Levels of disability, adverse impacts on quality of life and healthcare utilisation costs are comparable with those seen in conditions such as epilepsy or multiple sclerosis.
More importantly to me has been the contact from many people with the disorder who are grateful for the efforts we are making to raise awareness of this often-unheard-of neurological disorder.
More importantly to me has been the contact from many people with the disorder who are grateful for the efforts we are making to raise awareness of this often-unheard-of neurological disorder. I thought you might like to read this email I received following a call with the parents. I have changed all identifying aspects.
Thank you for listening to me.
My 11 year old daughter, A, has recently been diagnosed with FND.
Obviously I don’t need to tell you about the lack of support out there but I am hoping you may be able to help or point me I the right direction.
On Monday 3 March 2025, my daughter, A, aged 11, was a perfectly normal, healthy young person – outgoing, confident, active, loved school and played football and netball for local teams.
The following day, A came and showed me her fingers, which looked like they were broken. After establishing that she wasn’t pranking me and with the swan neck feature of her fingers progressing to other fingers we went to hospital. We attended A+E, once, and the Trauma and Plastics Team, twice, who said it was Swan Neck Finger (turns out this is a presentation not a cause) with her symptoms worsening and completing restricting movement in her righthand with A in severe pain. On the Friday evening this paralysis and pain presented itself in her right leg and foot, so we again took A to A+E where she was admitted to the Children’s Ward.
A spent a week in hospital and was diagnosed with Functional Neurological Disorder. The initial impact that this is having on A, is a paralysis in right foot and pain up to her hip, and intermittent paralysis of her right hand and reduced peripheral vision. It is also present in the left side of her body, leaving her with no feet or hands functioning. It has also progressed to all 4 limbs at the same time, on 3 or 4 occasions, leaving A effectively paralised for 12+ hours.
Everything we are being told and reading online is that specialist help, and support is needed to help treat A and to prevent the conditioning worsening and help with long-term management and to prevent her mental health deteriorating.
There is no specialist service for this in Lincolnshire. The paediatric consultant at ‘X’ referred us to the CAMHS Team at ‘Out of Area’ but the referral has been rejected. I have asked for a referral to the Neuropsychology team at ‘Out of Area’ but I am not going to hold my breath. Our GP has referred us to a Neurologist, but this has been rejected saying we need to see a neurologist in our own area. I will be following this up with the paediatric doctor at ‘X’ Hospital
The Physiotherapist from ‘Y’ hospital have been great – acknowledging she is not an expert but they don’t want to leave children without help and support so are seeing us but trying to seek advice and guidance from specialist physiotherapists elsewhere.
I am trying to navigate a very complex NHS system to try and ensure my daughter gets the correct and specialist help and support that she needs but I am not having much success with this. Therefore, I am hoping you may be able to provide advice/ guidance or sign post us to support and help me understand what the correct treatment is that she needs.
Any help you can provide to get A the correct support and treatment would be immensely appreciated.
Coun John Smith
Pinchbeck Parish
Council
