My name is Melanie and since January 2019 my partner Daniel has been living with a range of neurological and neuropsychiatric symptoms which the NHS has been unable to diagnose despite testing. Left without answers, and seeing no way forward to improve his quality of life or to contribute to our deteriorating finances, Dan attempted suicide at the end of March 2021. Experiencing your partner, a previously healthy, fiercely independent man, reduced to placing no value on his life is indescribably devastating and I would not wish our experience upon anybody. We have our suspicions regarding a possible cause of his illness, however we are having to pursue investigations and treatment via private healthcare as we have struggled to find advocates within the NHS able to help us further Dan’s diagnosis. For the past two and a half years we have been continuing, and struggling, to live on a single income as Dan’s symptoms affect his ability to be independent. We are ineligible to receive any external financial help normally accessed for disability or income support despite multiple applications. He has sold his car and other personal items, and has tried to work from home when he can. We believe in hard work and being self-supporting, but we are now at a point where we have nothing left. We desperately need help to continue the search for a diagnosis (and hopefully cure) for Daniel’s condition before he makes a second attempt on his life. We have worked with our local NHS Crisis Team in the wake of his suicide attempt, and we cannot praise enough how attentive and supportive they were during that time. He has since been discharged from intensive mental health services. I work full time as a veterinary nurse, and I spend every hour away from him concerned that he may hurt himself either accidentally or on purpose when I leave him at home. Treating his depression alone is not the solution sadly.

In January 2019 Dan started experiencing insomnia, and over the following weeks developed a range of symptoms including extreme fatigue and breathlessness, numbness in both hands that progressed up the arms, and reduced dexterity and coordination. He started falling asleep while driving to work, and it became clear that his symptoms were rapidly worsening and that he was no longer safe or able to attend work or be independent outside of our home. Even as a passenger he still falls asleep instantly in a moving vehicle. As a veterinary receptionist Dan was used to a multi-tasking, fast-paced and varied working environment. He had an unparalleled ability to remember every client and their pets’ names when they arrived in reception without looking at their accounts. He now struggles to remember a conversation we had earlier that day, to take his antidepressants, or to be able to process what I’m saying if there’s other sounds in the room. He lives with a wide range of symptoms that fluctuate in their severity day-to-day including breathlessness and severe fatigue, hypersomnia, memory loss, disorientation, vertigo and nausea, headaches, anxiety attacks, joint and muscle pain, abdominal pain, tremors, visual disturbances, difficulty spelling and pronouncing words which he was able to previously, limited capability to multitask, and changes in personality and mood (easily frustrated and increased irritability/anger, depression). Dan experiences muscle weakness in his arms and legs and will stumble and fall if he attempts to walk without support. He often has difficulty holding and manipulating items in his hands. While these symptoms may not sound like much, collectively they are debilitating. He is unable to do ordinary tasks without becoming drained of energy, or simply leave the house by himself. Disability assessment personnel have determined he is able to perform physically and mentally at a suitable level to not require any financial support without ever having physically met him. A report from a telephone interview with an assessor states he is capable of walking further than the length of a football pitch unaided; he manages to walk about 15-20ft without his legs buckling under him. Throughout his illness it feels we have been held behind an invisible barrier when trying to access help and support. Every day is a struggle emotionally, physically and financially. He has had numerous blood tests, MRI and CT scans, xrays, electromyelograms and examinations from respiratory and neurology consultants, all of whom have been unable to pinpoint or explain the prolonged nature of his symptoms. We are a couple in our mid-30s that should be enjoying our lives together without restriction and running around after a young family, not suffering a seemingly undiagnosable condition that leaves him ravaged and me as my fiancé’s carer. It is as though our life has been on hold since those symptoms first started. He has essentially been a prisoner in our own home for over two years, and trying to do housework to help me leaves him exhausted and with even less self-worth. We cannot express how grateful we would be if anyone would be able to assist us in any way, no matter how small, to be able to get further towards improving Daniel’s current situation. We are currently working with a private Infectious Diseases consultant as we suspect his condition is the result of a cat bite at work prior to his symptoms starting, with unfortunate and rare complications. Donations from our family have allowed us to have a first consult and specialised blood tests. With no definitive process to follow regarding his care we are unsure how much everything will finally cost, but we need to find finances to fund further consultations, diagnostics and potentially curative drugs privately alongside our normal living expenses and hopefully being able to chip away at our debts slightly. We appreciate many people struggle with living costs day-to-day, and we have never liked to ask for help as arguably no-one is more deserving than anyone else. We are the love of each other’s lives and I desperately hope we can find answers to improve his quality of living and allow us to have a future, before he decides ending his life is the only solution again.

I will endeavour to post updates regarding Dan’s progress going forward. Thank you.