Neurological Alliance Need You Please Sign the Open Letter

Richard_Scope · July 29

The NHS’s own measure of patient experience, the 2026 GP Patient Survey, shows people with neurological conditions continue to face significant inequalities in access to and experience of care compared with the general population, highlighting the need for a national plan for neurological conditions.

People with neurological conditions continue to report poorer experiences than many other people living with long-term conditions. The survey showed people with neurological conditions are less likely to see the healthcare professional they want, less likely to feel that their mental well-being was taken into account and less confident in managing their condition.

Too many people with neurological conditions are still missing out on the care and support they need. That's why we're calling on the Government to introduce a national plan for neuro, to improve care for the 1 in 6 people in England living with a neurological condition

If you agree it's time for Government to act, please sign our open letter if you're able to do so. Thank you to everyone who's already done so - nearly 3,000 people - an amazing result so far.

Sign the letter: https://bit.ly/4w5hHAY

Read more about the GP patient experience survey: https://bit.ly/4h2cd5s

Rag_793 · July 29

I have signed the letter as this is something very personal for me 🧡

I was diagnosed with ADHD, ASD and Learning Difficulties in the 1980’s, I was also sectioned between the ages of 6 & 8 years old. Having to bounce between main stream schools and special needs schools alongside the stint being in a children’s psychiatric unit. After leaving school I had no longer had Psychological & Social Services input in my care. I managed to somehow not have time off for mental health for 15 years, then from 2015 to 2020 I had quite a lot of time off work due to depression and anxiety. But then in 2020 I suffered burnout and had a massive breakdown that just broke me mentally and physically. I can say looking back the Depression & Anxiety stretched all the way back to my childhood and the very messy and difficult upbringing I had. In 2023 I was diagnosed with Emotionally Unstable Borderline Personality Disorder, which just added to the huge burden I have carried since early childhood. I then suffered an even greater breakdown when my wife left me and I decided to seek help by going to my local hospital. I then spent five weeks inside a mental health unit in Derby which opened my eyes to how people in my life close to me placed a heavy burden on my mental health. I never had a positive or good relationship with my local CMHT in Chesterfield and once in Derby it took a heck of a long time to build up trust and confidence. There was a few times that I had to place formal complaints due to the lack of care I was receiving from them. The biggest sticking point for me was I desperately needed and required long term Psychological Input, but I was refused by the CMHT, private sector wouldn’t touch me with a barge poll due to the BPD. After a lot of stamping my feet and throwing a paddy I finally got accepted for prolonged Psychological Input and have been on the waiting list for the past few months. Since I moved into my adapted flat in September 2024 it is fare to say everything with both my mental and physical health is like a never ending rollercoaster 🎢 I closed off contact with friends, my family I chose to cut ties with in 2015 for the goodness of my health. I find that I am better on my own, not having people to answer to, keep my own council and be at peace in my flat. My Mental Health naturally chooses to raise its fists and have a dust up with my physical health which then brings out my inner chimp Hadrian which means my brain turns into the Somme. I don’t like asking anyone for help, but I am having to learn that if I am to travel anywhere by train or even abroad then I have no other choice. This means I have to eat humble pie and actually have a word with myself. Since September 2025 I have been working with a local council area coordinator, which has been a massive benefit to me.

I always use the Winston Churchill quote “If Your Going Through Hell, Keep Going” as my foundation to keep fighting against all obstacles and challenges in my way.

Starman · July 30

https://forum.scope.org.uk/discussion/comment/1141474#Comment_1141474

It sounds like you have been through a lot, since childhood, i admire you for the way you have at least tried to find ways to cope and not ask for help etc, good on you and i hope you continue to do so! 🙂

I developed a neurological condition in 2002, which affects my balance and co-ordination, and it took me until just last year to finally get a proper diagnosis. At first, i felt it wasn't taken seriously in how it affected my everyday life, time off work, struggling to cope with the mental aspect of putting up with it, of having no real explanations, or long term answers or plans. I had to find my own way of coping, family and friends just didn't really understand, although they were sympathetic, i needed practical help! I do think the whole spectrum of neuro conditions, not just the ones' like ADHD, Autism etc, but also like mine, needs more attention and funding, but as we all know, with an overstretched NHS it's just impossible for people sometimes to get the help they need sadly.