"I'm still no further ahead"

I have always been neurodivergant and have struggled my whole life because of it through  aspects, socially, financially, through my career, educationally and so on. I started the process trying to get an assessment as the symptoms felt like reading a book about myself, several years later I'm no further ahead. 

2 years in I almost got my initial assessment with the psychiatrist only to get to 4 days before the appointment. I got a call from the surgery telling me the psychiatrist had left, and that was that. There was nobody to see me until they found a replacement. This was gut wrenching. 

This happened a second time, where after a replacement was found my appointment was pushed back and back by people who didn't want to assess me as they weren't confident to do so. No effort was made to outsource this. I would have gladly travelled anywhere in the UK to have been assessed. 

Last year, I was assessed through the NHS on a trial program to assess adults with autism. I was told that by doing this, it would lead onto a further pathway to an ADHD diagnoses. I was desperate even though I had no interest in this, I participated anyway with interviews and appointments totalling some >5 hours with detailed tests. These tests were independently reviewed by one of the top psychiatrists specialising in women's presentation of autism. 

I was diagnosed as autistic. I didn't expect this outcome and it was honestly quite traumatic to reminisce your whole lived experience through a new disabled lens. Every struggle you ever had could have been different if even just one adult in your past realised something was amiss. It's devastating. 

However, after I gained this diagnosis, I went back to my GP to enquire about the next step and initial query, the ADHD assessment as I'd been promised. My GP referred me to psychiatry and I waited. And waited. This promise had been a fabrication of a service that does not exist in my area. 

I finally got to a really desperate mental point (nearly suicidal, though I've been almost suicidal a past 4 times waiting on this assessment and struggled through) and went back to the GP again. They referred me as an urgent case to the local psychiatry but worded the email in such a way to completely dismiss my symptoms and only focus on my depression. Of course I'm feeling depressed! I can't get the help I need!

I failed to receive a letter at all from the mental health department. Instead I heard 2nd hand from my GP surgery. They had to print out the email, in which the psychiatrist rejected my urgent referral. 

In the letter my previous diagnosis was dismissed entirely, stating that the grounds for it were thin. When I had my assessment I had been masking for 30 years of my life. The more time I've had to reflect and learn, the more I realise I was masking throughout the assessment process unintentionally and my assessors still saw through that. I have so many stims, thought processes and habits that I had no idea were neurodivergant when I was being assessed. 

I was advised to write an email personally to the psychiatrist to fight my case by another GP, which I did. I was also advised to send a copy to the surgery, which I didn't do.

I didn't because I was so unhappy with how the original GP wrote about me to the psychiatrist in the first place, I didn't want them to read my letter. It's a small community and I hate confrontation.

Again, I waited for a response. Almost a MONTH after I reviewed the printed letter from the surgery, I got my own hardcopy rejection letter in the post. To say this made me angry is an understatement. How it takes a month for a letter to arrive after it arrived at my GP surgery when I live a 10 minute drive away is beyond me.

My GP wrote back to the psychiatrist I believe, and to my knowledge we have had a response yet, more than 6 months later. 

I feel absolutely betrayed. I feel forgotten and like I'm just another CHI number in the NHS. 

For someone to wait 6 years and to get nowhere is beyond hurtful. To be ignored by doctors when you have been crying out for help for year after year is absolutely devastating. I have many friends who live in more lucrative postcodes and they only had to wait a matter of months to be seen. It's so unfair. I have voiced many times to my GPs that I would happily travel if I could just be referred further afield. 

I'm disabled on low income. I have had to resort to going privately to get my diagnosis. I can't afford it financially. But I can't afford NOT to do it either. A diagnosis will be no use to me if I can't stand to live anymore waiting eternally. I have lost jobs, I've lost projects. I've lost the better part of my 20's to my mental health. My physical health has been no better. 

People with undiagnosed ADHD are more prone to early death, addictions, debt, dangerous driving, poor mental health and many many more comorbitities. Not to mention my poor mental health directly impacts my physical health. I have Inflammatory Bowel Disease which is triggered by stress and another 4 chronic illnesses.

I feel that the NHS has failed me, and fails many of my friends who are also desperate for help in my area. It's not good enough. I'm tired. I'm poor and I need help. I hope this never happens to anybody else but until the local NHS makes significant changes and hires more psychiatrists, it will continue to happen. Women are just as likely to be autistic or have ADHD as men. The NHS needs to do better.