Looking to raise awareness, but mainly have a continual donation stream of ADHD - Who?

offsubject

Hi,

I have just joined Scope today, I hope every one is well.

I won't go into everything in this post, but quick outline:
- Privately diagnosed with ADHD - Combined Type, suspected all my life and was told I had a basic score of 18 out of 19, but that much more is taken into consideration.
- I was inbetween jobs but I recently had a few people genuinly ask me if I have had a formal diagnosis, which in the past we took as a joke, but this one really got me thinking about how I will organise my computer desk drawers…AND whether it is worth getting diagnosed.

It was November 2022 and the NHS wait list was 4 years and the other free one, but its shorter, but not private short, plus if you are diagnosed at the time it was still another 20 weeks to start potential medication; this would drive me mad.

I shelled out £850 for a very thorough full examination and pretty much they judge most things on non-verbal things, the way you answer not really what; to weed out the fakers (I don't know why they would…)

So, provided school reports from age 6 to Uni and some work comments etc. My Mum had also passed away 18 months earlier and it affected me to the point of knowing I couldn't possibly go on without her in my life. That took 4.5 years.

Anyway, Mixed Type Diagnosis, fairly severe, with some very basic things being very hard, and hard things like reacting quick in an emergency scenario not problem at all. Also, if you think this is bad, I would be asked a work question doing Sales and Account Management for Events, ideal to have! And a self employed E-Comms business.
- I was ALWAYS in a realationship or worked with people or travelled with people even if new, lived with friends or gfs or fiancé. Basically, living alone turned out to be a NIGHTMARE.

But it got bad that I could be asked a question by my boss, and I would convolute it so much it was like turning schematics into surrealism and several times I had forgotten the original question, completely, the day, date, birthdays, names (But I will spot a face seen anywhere)

I have also had terrible Sciatica for 5 years, back spasms, Drop foot, twitching, pain worse than boiling water poured all over a bare foot *an accident…It was one of those pains that you'd pay for the person who just doesn't quite believe it is as debilatating as it is - Not a sadist, promise.

Covid didn't help, but I can represent myself well and taka lot of notes (of course), but due to strikes took 3 years for an MRI and 4 years to learn what is wrong, that is a year wait….Turns out I have:
- Isthmic Spondylolthesis Grade 1/2, but going front and back
- L5 Sciatic nerve trapped on bone spurs
- PARS fracture, actually means I was formed with a split in my spine, and my Dad has Spina Bifida, we both need to explode out bladders we stand up and a lot more in common.
- I had waiting 4 odd years, 1 year after MRI, was help up in my apt by 3 hours, to get 5 fleeting minites and a document about the Operation I will need, ran through the copier so many times it was like reading off slate. This was all new, I just thought a trapped nerve, that's it….But nope, a congenital, lifelong multi-disability.
- Also, 2x Discs are nearing collapse and some parts are so worn, bone spurs are cutting into back muscle.
- I Need a TLIF, fusing my L4, L5, S1 together with 2x strong rods, side by side, drilled in deep enough to nearly reach the front of my Verts.

In addition, they would pull my spinal cord aside in what appers to be the same manner as a fish getting hooked; defidefinitely looks like the spinal cord is like bunjee cord?!

I would have all the debris and old discs removed, bones shaved, and then 1/3 of the entire Vertebrae bone cut out, ground up and made into bone cement - I would then have my L4/L5 and L5/S1 clamped open to not stress the rods too much, and have 12mm Chrome/Titanium/Adamantium…Blocks put in, and then like fixing some drywall, fill it in with SLOW dry bone mixture.

Besides losing lower lumbar mobility, a year to fully heal as so much back muscle is cut, and any small cracks above or below means mmore of me is welded…Anyway, when the pain gave me No chaance to sleep for 3 months, I finally got an urgent Nerve root block, when they casually responded yes, when I asked is my S,B normal, and that my dad had a rare type.

Anyway, it was 2 people using needles and XRAY for 2 hours, with 4 others in the operating theatre, awake, wathcing it go in and out and kind enough for them to say…We will give you the absolute top amount and spread it out.

3 Days later, NO PAIN for the first time in years, amazing, but family and friends who didn't understand it didn't really care; so I made sure to show them the MRI and screenshots of the operation TLIF I needed, one that could take 10 years off my life, 10 years ADHD peeps may already lose. So, advocated my spine off to get regular MRI's, physio, tests and learn to use my core muscle, not my bones and joints. This has helped so much, but you need the break from pain to even attempt the streching and deadhanging.

I will stop there, but FUNDRAISING! I have done something most years that usually hurts, is scary, embarrassing or hard to get the most donations.

However, I have notriced when compared to a lot of other disabilities, mental or physical, ADHD is SEVERLY underserved.

With the NHS wait times reaching your average mortgage period, I know why a lot of people are feeling USELESS, especially those around 12 and older, into adulthood - 8 years I last checked. If you pretty much know you have it and can write a list of 50 niche things you both do, with some commorbidities too; 8 years, especially for the most inpatient group you'd find…SEEMS LIKE HELL.

I think the wait is dropping, but I will assume that is not due to more staff, resources, education, assistance with expected ADHD or more specialised media, schooling, clubs, charities etc.

I am now self employed running 8 soon to be 12 businesses/brands across 20 odd outlets, e-comms to consulting to archiving personal photo collections.

I want to have a thermometer type guage on each of my socials and websites, showing total raised of all time, and the amount in that FY. I want 5% or profits across all my work, as well as fundraisers, giving my time to educate my experience of russian roulette Psychiatrist choice, calling 30 chemists to get my chosen med, Elvanse 60mg slow release, to how to not get it into your head and hyperfocus on having something without diagnosis.

I spent a year on Reddit ADHD and ADHDUK speaking with all manner of people, the memes hit the best, but I have saved so many people who paid £800 to nearly double, only for their local dispensing authority with Shared Care deny their meds and end up paying close to £300 a month (That's when its actually in stock…)

I have put E-Books, annecodotes, guides, ways to manage side effects, ways to utilise the positive parts and just improve overall wellbeing and get people comfortable having this for life.

I will still do what I have just mentioned, and would like to start a Video Podcast and work with a group of people with different skill sets to wotk together on:
- Ted like talks, aimed at older people or parents
- Journals to rule out other things
- Work with ADHD and not against
- YouTube Videos, Podcasts, E-Books and a thriving community, especially with some estimates putting the potential percentage at 10 percent, with Prisons rising to up t0 60 percent, this is one example of why changes need to happen.

So, if you have got this far, I think I will do a short version for sure…

1. What is out there currEently, focusing mainly on the charitable side?
2. How can money raised get more people through a thorough but more lean process to diagnose?
3. Make it less cost prohibitive to go full private, but also incentivise more pros starting clinics and making it anything but a minefield getting diagnosed to getting regular meds and everything in between entails, it's like a twisted joke.

Would love to hear and see where this goes, I will be raising money ASAP so suggestions or I will save it up and get some interest until something good comes along or is made.

Thank you so much,

Richard