In 2020, I was experiencing seizures on a daily basis and required emergency treatment every day. My GP was convinced that this was an exacerbation of my back problems and referred me to the muscular skeletal team who could not find any obvious links between my back and the symptoms I was experiencing. I’m blessed to have such a great family and they researched my symptoms and identified Functional Neurological Disorder as a possible diagnosis – I had never heard of FND until then. My GP was also unfamiliar with this condition so we sought private treatment to confirm the diagnosis. Once this had been done, we started researching treatment options and were able to get an appointment with Professor Mark Edwards who was able to offer information on the condition and identify both NHS and private treatment options. By this time, we had shared the diagnosis with the Emergency Department and Ambulance Service and they inferred that my condition was psychological and therefore, I was ‘choosing to have the seizures’; as a result they withdrew all treatment. I was left with the very painful daily seizures with no hope of medical help and I attempted suicide.
That’s how bad it was for me at that time.
My GP did put through a referral to NHS Neurological treatment centre in London (I live in the Midlands). Against COVID-19, the NHS wait time for an initial assessment was 4 months, so my family pulled together the funds to pursue the private options and this is how we found Brain & Mind.
From my very first assessment with Dr Dilley, I felt at ease and relief that there was someone who understood what I was going through and was able to determine the type of support I needed. Having an integrated team of neuropsychiatrist, neuropsychologist and neurologically trained occupational therapist made the whole therapy process easier to work with and ensured that we targeted the areas of support I needed. We agreed goals at the outset so we had a framework for the therapy. In addition, having a regular multidisciplinary team meeting allowed us to make any changes needed immediately but safely. I was given an indicative timeframe so I knew how long the therapy would last – but also allowing for additional time if I needed it. I felt in control of the whole process as every decision was agreed upon collaboratively. My main areas of support and therapeutic work were with fatigue management, and emotional resilience. I had joint sessions with the OT and psychologist when needed. They also delivered a session for my family so they could also understand my condition better and learn how best to support me as well as resources that I can use in the future.
Since working with Brain & Mind, I have had 4 episodes of seizures and each one only lasted a few minutes and was managed at home without needing external medical intervention! This is proof that the therapy offered by Brain & Mind really does work. My quality of life is so much better – that’s not to say I don’t still have ‘bad’ days, but my ability to take the bad days in my stride through the techniques I have learned has considerably improved.
I’m absolutely certain that there are many people out there who have experienced poor diagnosis and treatment of Functional Neurological Disorder and I really do hope that by reading my story, they are able to get the help they need as I did with Brain & Mind.