So this morning I had a phone call missed from a number that I thought I recognised… it’s local(-ish) to where I live, so originally thought it might be the dealership where I bought my car begging me to test drive their latest whatever. Googling the number elicited no hits, so I went to my Gmail inbox and searched for it… and had one email thread as a hit – the Autistic Spectrum Condition Diagnostic Assessment Service. It was only six minutes since they rang when I called back… spoke to the lady I’ve been emailing and she said that she had to “remember why [she] rang [me] in the first place” and that she’d ring me back in five minutes… fifty five minutes later, she rang back and informed me that there was a cancellation and could I be available tomorrow morning at 9:30 and next Thursday at 14:00… I said of course and thanked her for ringing me. She confirmed my email address and said she’d be sending me the letter, map to get to the clinic and a photo of the building.
Oh. My. God.
Bearing in mind that in April (see my blog post That took effort.) I was told that I could expect an appointment in July or August, I had been preparing myself for that eventuality, so to have this come up so quickly [especially after emailing my MP as part of Autism Awareness Month through the National Autistic Society, but more on that in a minute], I have had no time to mentally prepare for what is going to happen tomorrow… but perhaps this will be for the better, because it’s not like an interview where you have to put your best self forward… it’ll be better if they see the raw, unmasked and vulnerable version of myself that no one has ever really seen…
I know that writing to my MP (which sounds so uppity and Daily Mail reader outrage-ish) had no impact on there being a cancellation, but I can’t help but wonder if my name has made its way up the list because of sharing my story with him. I shared a very abridged version as part of a form that the NAS had on their website prior to the Parliamentary debate on 28th April about the national Autism strategy. I had an email back from him thanking me for sharing my story and:
Delayed diagnosis of autism causes needless suffering, and I am committed to ensuring that people with autism spectrum disorder (ASD) lead fulfilling and rewarding lives, a commitment the Government shares.
Delivery across health care is a Government priority, and the Adult Autism Strategy means we are improving care for those with ASD. Government guidance sets a clear direction for how health and social care can continue to improve services to deliver fulfilling and rewarding lives for people with autism.
The Government has introduced a new birth-to-25 education, health and care plan which sets out in one place all the support families will receive and help bridge the gap between education to employment and independent living.
For children, the Government is funding £750,000 in 2016/17 to the Autism Education Trust to provide autism training to teachers. This ranges from basic awareness training and practical knowledge through to more advanced training for school leaders. To date, the Trust has arranged training for around 90,000 education staff.
NICE guidelines on autism make it clear that people should wait no more than three months to start diagnosis. Every part of the National Health Service should be keeping to these guidelines, however decisions on how money should be spent locally are for clinical commissioning groups.
I know this means a lot to you and I will continue to monitor the situation closely.
I sent back that I was aware of the Education Health & Care Plans as I write them on a daily basis and that, unfortunately, I’m a few years beyond the age range (and to be fair, knowing the criteria, I don’t think I’d fulfil it anyway!) and that “If NICE guidelines indicate no more than a three-month wait (which I was not previously aware of), then things urgently need to be reviewed within the local NHS Foundation Trust, as I am still awaiting confirmation of my assessment appointment. I have chased up a rough estimate and was advised “possibly July or August”, which will be just over a year after requesting an assessment. As I originally wrote in my first message: ‘It will be a year in July since I requested my assessment, but because of a breakdown in communication between my GP surgery and the Assessment Team, I emailed and called to chase up my referral (as I’d not heard anything) and it was never received by the Assessment Team. As such, my referral and subsequent place on the waiting list was delayed by 6 weeks, which has caused me a great deal of undue anxiety and stress. Because I have adapted and built up a repertoire of coping skills over the years, I was able to chase it up myself without anyone else’s help, but I must stress how terribly upsetting the whole thing was and I had to emotionally wrestle myself back from the edge of a colossal meltdown.'”
After sending that email reply, a few days later I had a letter from the House of Commons in the post on my MP’s headed paper, saying: “Thank you for emailing me about Autism. I am very sorry to learn of the challenges you have faced with getting an assessment and support. I have raised this issue on our behalf with the local NHS Hospitals Trust Foundation and I will let you know of their reply in due course.” [He also included excerpts from the debate but I doubt you’re that interested in all of that from my letter, but you can find it on Hansard – World Autism Awareness Week.]
Thankfully, my managers were both really supportive and wished me luck for tomorrow (not that they wouldn’t be supportive working in a SEN Team, but they could have been a bit awkward with how short notice it was).
On a completely separate note, we went to the chip shop this evening and I opted for a burger instead of my usual battered sausage and curry sauce. The girl brought over the empty bun to put salad and sauce on it… and I was horrified to see that she had brought over a buttered roll. Like, a buttered bap that is individually wrapped by the till. WHAT!? WHO PUTS BUTTER ON A BURGER?!? That sounds like an American thing if anything… my polite filter wasn’t on and I said, “Um, I don’t want butter on it.” and the girl was a bit taken aback and had to warm up an unbuttered roll from the fridge. I’m sorry, but if we’re paying money for a burger, I should be able to have it how I want it… never before in my life have I ever had a burger with butter, nor will I ever!! Blech!!
So, wish me luck for tomorrow…
One thought on “It’s happening… It’s finally happening.”
Just to say I have been reading through most of your blog posts and wanted to thank you for writing this blog. I am so glad you got your diagnosis in the end. I am awaiting an assessment aged 60,, been waiting 8 months already, probably 4 months to go. Like you were initially, I would be devastated not to get a diagnosis. I am had a lifetime of difficulties with depression, anxiety, keeping jobs, inability to cope, difficulties with friendships. Now I am older it is becoming harder in that I find social occasions even more exhausting. I am on my local NHS waiting list but also on the waiting list at the Lorna Wing Centre at the NAS because being older AND a woman I think it gives me a better chance of being assessed correctly, though it is horrendously expensive. Thank you again and all the best for your future.