We have agreed to meet with the ICB to discuss the autism & ADHD assessment pathway pilot, & before this we want to gather voices of those affected by the pilot, to find out what is important to the community as a whole and to amplify your voices.
To do this we would be very grateful if you could complete this anonymous form, email us at ND@ydrf.org.uk, or leave us a voicemail on 01904 326781
Some of the responses we have gained so far can be read below, use the following links to jump between the individual questions/topics
– Impact on mental/physical health
– Impact on relationships with friends/family
– Impact on employment (either paid or voluntary) or education
– What people directly impacted want decision makers to know
Please use the space below to tell us any general feelings, thoughts, and/or experiences about the pilot
I feel completely abandoned by the system. I didn’t even get to speak to a GP, I was just sent a link to the profiler to answer questions that confirmed my suspicions of ADHD but no solution. The suggestions at the end of the questionnaire were insulting! I the “wellbeing” section the resources were a few bullet points of very basic advice. I am a working professional with a phd. If a calendar or notebook could help, I wouldn’t be coming to you for a diagnosis. In the neurodiversity screener” section, all resources are were pdf files, in my case there were more than 30 files. Some of those were the same but repeated under different “challenges”. This is an enormous amount of work for me to go through. It would mean downloading all the pdfs, deleting the ones that were repeated and then read all the rest, which still consisted of bullet point suggestions. So, a lot of work for very little payback. This is not at all accessible or user friendly. Also, at the beginning of the neurodiversity screener if you have “many traits” for one of the conditions it says: “this is NOT a diagnosis […] This does not mean that you have the condition but you may like to seek out more information on gaining a diagnosis and exploring other potential reasons for this presentation”. So, how do I do that??? The take-away message from their profiler is that I might have adhd and I should seek diagnosis! That’s what I’ve been trying to do! That’s what I thought this is!
It has upset and made me more frustrated with the NHS as a whole
I am speechless!! Whilst I accept that in todays society, automation is a good tool, this has taken it too far, and it is out of date. This is nothing more than a pre screening tool that should be acted upon and fed through for a proper clinical diagnosis. I am 54 years old, and my ADHD/ASD has resulted in me being made redundant, Access to work was on a 7 month waiting list, and my symptoms were un manageable. I ended up going private for the adhd part, but the medication has highlighted possible co morbidities, ASD being one of them. I do need need help, proper help, but I am still none the wiser as to what I am actually dealing with. I got an A4 sheet with 6 points, telling me to make lists and basically use a planner. The person who wrote the sheets, clearly has zero understanding of an ADHD mind, and this was insulting on every level. The screening questions, are extremely basic, and a lot of assumptions made, with wrong diagnosis. e.g. my mental health has suffered for the last 4 years, however because somebody who is close to me passed away within the last 6 mths, that was perceived to be the problem… no that is not the case. I also have difficulty manging my bills due to my ADHD, but they pin pointed Dyscalculia, which again is not the case. Never once was I asked if I was going through Menopause, which is the leading cause for women over to suddenly find themselves seeking a diagnosis, or family history!! I have 17 members including all my immediate family diagnosed on the spectrum, along with attempted ending lives and self harm, which is most likely due to wrong diagnosis and treatments. This pre-screening is basic and feels like it is used a deploy to fob people off, without really addressing the cause and providing real practical help. I feel angry and let down.
How is this pilot helping anybody seeking an assessment? At worst you are denied the ability to even get onto a waiting list. At best (for those with the most severe needs) you join the back of the queue behind the rest of the backlog. They should be putting extra resource and funding into clearing the backlog and dealing with new assessments, not stopping anybody new joining the list. Even RTC doesn’t appear to be an option anymore which is surely not allowed? Nobody asks to be ND but they at least deserve to have validation of their condition as an explanation for lifelong struggles.
my life was in shambles before I went to my GP, now my life in in shambles still but with the added stress of knowing no one cares nor will help
Having completed the online forms, I was then sent a report but nothing else. I hadn’t a clue what was meant to happen next, was I added to a waiting list, did I need to speak to a GP or what. No idea, no explanation, nothing. Turns out that was it because I didn’t meet their extreme criteria so was literally left in limbo with no idea of where to turn next. The whole pilot scheme is leaving people in a worse state than when they started. You have no idea what’s happening, whether you’ll finally get a diagnosis or what. There’s zero information & zero support.
I’ve found this whole pilot extremely distressing. What I need is an actual assessment, to know what’s going on, to understand myself, to get support from work, what I didn’t need was another online questionnaire, more self doubt, self hatred, invalidation, and stress
The design and implementation of this pilot has been disrespectful and dismissive and even condescending to neurodivergent people, but the attitude to the upset and enraged people of York and the misrepresentation of feedback and the changes (for the worse) show callousness and incompetence towards a vulnerable sector of society and I’m disgusted by the ICB’s malicious words and deeds and their creation of numerous harrowing experiences among a group with disproportionately high harm and suicide rates, and adding extra pressure onto exhausted mental health services. For shame. The NHS is unrecognisable with people like this running the show.
I emigrated to the UK from Eastern Europe with hopes of accessing a formal diagnosis. My home country is not educated on neurodivergence and doctors kept misdiagnosing me, medical environment back home is overall very ignorant and abusive. Although I find myself in a much better life situation thanks to surrounding myself with like-minded individuals, I still need systemic support to thrive in this society. I live in fear of not being able to hold a normal job due to the severity of my condition. I rely on my parents for support as an adult, because they’re the only support system I have. I want to experience independence, but I won’t be able to without my diagnosis.
It’s truly heartbreaking and I wish the NHS knew the weight of their actions.
While I recognise there is an importance for people going through something where there is a danger to self or others and that there should be a fast track for them, this “pilot” is just neglecting entirely anyone else. It goes against “do no harm”, it is infact “do harm by doing nothing”.
this year has made a difficut situation a million times worse due to the pilot
The pilot was completely inhumane, I did not speak to a single person, not even my GP, who sent me a link to the Do It Profiler. There was no indication of whether or not I had been referred for an assessment. This was a big deal for me, after 2 years of gradually coming to realise my neurodivergence and I was keen to gain a formal diagnosis. After a lifetime of set backs and very low self esteem, I needed acknowledgement and validation, and instead was met with complete indifference.
I don’t think the do it profiler is suitable for this use
Do you feel that the pilot has affected your mental or physical health?
My mental health took a severe hit after doing the profiler and realising I will not be referred for assessment. It feels like there is no help available and I will just continue to struggle with my life and my work until I get fired or I just can’t keep going any more.
I was struggling so much before I went to see my GP, I’d been building myself up for literally a year and my hand was being forced by life, to only then get an inaccessible questionairres and some generic PDFs was devastating. Honestly I wonder if there’s any point going on
Absolutely, I have had more meltdowns because of the anxiety and feeling of helplessness as the doctors can’t help me. Why would a doctor agree to refer me to the pilot in the first place as they agreed that it sounded like I am autistic (I also told them I was not suicidal so why would they refer me knowing I would not pass the pilot). My associated conditions (anxiety, OCD and emetophobia) have been very bad recently. I feel I need the assessment to truly understand what is happening in my brain, but being told no is so confusing and detrimental to my mental health.
Massively – I don’t where to go from here!! I am lucky that I was afforded the luxury of a private diagnosis and a shared care with my GP for my ADHD, but clearly the medication has thrown up other co morbidities, and I need a diagnosis, so I can make adjustments to fit into this god forsaken world of one size fits all! I am not looking for a cure, but I wanted some real help, instead this self help approach is asking the individual to put in to practice all the things that they cant do for themselves!! I NEED PROPER HELP!!!! NOT A ONE SIZE FITS ALL WORK SHEET THAT IS OUT OF DATE! The DWP are pushing me to go back to work, I cant even remember an appointment to see them, I am now being threatened with being sanctioned, I am loosing everything, but help is only available once I have lost everything. Excellent value for the TAX payer!
after been 6 months free from self harm and disordered eating being sent the doit profiler sent me into crisis and self destruction. i am finding things much header now than i as a year ago. the self hatred and self blame is strong
I have turned my back on autism and ADHD – what is the point of trying to understand how this affects me and my life when no one will help me with it. Other family members who do have a diagnosis find that their needs are ignored and unsupported anyway. This pilot has made me more hopeless and completely disillusioned with the NHS. Undiagnosed autism almost cost my daughter her life. Lives are at risk here
yes. How would it not? I’ve basically being told that despite my life falling apart I am “not ill enoguh” for help, that no one cares, that I am just a burnen on the system and as I can’t just fix myself whats the point?
Yes. I was free from self harm for over 2 years but then this pilot brought back ask the self hatred and doubt leading to a relapse
Yes, because it left me completely in the dark about what the next step were. My anxiety increased, I was now left struggling with my ASD/ADHD traits that were so obvious in the report but no clue what to do next.
I did the profiler while in crisis, I was so ill and struggling so much, I did the profiler and got told I was getting referred but I’ve heard NOTHING since and none will help me until I get assessed as they feel they are lacking information on how to help. I’m genuinely feeling suicidal at this point and got no support
This is just another emotional drain and stigmatizing move by people who don’t understand. It makes you feel like you are being erased as an ‘unfortunate’.
I really need a therapist that specializes in autism. Regular therapy won’t do me any good, I constantly feel misunderstood and lost. Knowing I’ve been denied access to this kind of support causes me to have strong feelings of wanting to give up on life.
yes, I was already struggling and have been within the mental health system for a long time been given misdiagnosis after misdiagnosis. Nothing ever “fit” no treatment “worked” then finally an occupational therapist explained sensory profiles to me, explained what autism was, and it was like everything made sense. But without an assessment none of this is official, knowing myself helps but without it being official I can’t find out if my EDNOS is actually AFRID, can’t get funding for support, honestly I can’t see any point in living without knowing for sure as I can’t loose another 10 years to treatements that won’t and can’t help.
Yes. It has made me so angry. I am diagnosed adhd with suspected autism. I’m glad I know what is wrong with me. How dare they prevent others from finding out why they also struggle? This is nothing but a cost cutting exercise which is having a direct affect on people’s lives!
the profiler made me feel so stupid, and made me feel really bad about myself. the questions were hard to figure out, the website was not accessible, I was told I couldn’t get any help, I was almost insulted when I asked for help on the basis that as I don’t have a learning disability I should be able to fill out a form. It’s hard to express just how much this whole process upset me
Do you feel that the pilot has affected your relationships with friends and/or family?
Yes, this has also had an impact on my family’s mental health too. Due to me not having any support, I’ve often got frustrated and angry & taken it out on those closest to me. It’s not them that are annoying, it’s my own frustration but it still affects them because they see how distressed I get at not knowing what is happening.
Noone seems to understand why I’m so upset and it’s effecting my relationships
Yes, I wanted an official assessment to help myself, but also to help explain to my friends and family about it. As a result, I have not told friends or family about my health, masking that all is well, which if the ICB actually understood this condition they would know the impact all of the masking has on a person. I could tell people I believe I am autistic but the truth of society is that people won’t believe you unless you have an official diagnosis, so why would I put myself through that? This results in me masking in all areas of my life. I am exhausted.
Yes, I wanted an official assessment to help myself, but also to help explain to my friends and family about it. As a result, I have not told friends or family about my health, masking that all is well, which if the ICB actually understood this condition they would know the impact all of the masking has on a person. I could tell people I believe I am autistic but the truth of society is that people won’t believe you unless you have an official diagnosis, so why would I put myself through that? This results in me masking in all areas of my life. I am exhausted.
My children are angry that I can’t get them the help they need.
I have no relationships, which is why I pursued help, I lost everything this year! My job, my friends, my family – apparently I need to make an attempt on my life to be taken seriously! There is no future for me, as this pilot leads you to a dead end with a huge brick wall – there is no where else for me to go or turn to.
i dont have many friends, but those that i do seem to think i am overreacting about this. they dont nderstand, they cant understand. I am down about half my friends since May
Do you feel that the pilot has affected your work (paid or voluntary) or education?
My work place will not introduce adjustments without at least a working diagnosis. I honestly don’t I’ll still have a job in a few months at this rate.
No because luckily I am self employed & surround myself with people who understand my neurodiversity.
i am extremely anxious that because of the pilot of ‘just ignore people who aren’t in code red situations’ that they’ll just discard me and i’ll no longer be able to get an assessment for adhd. i’ve been struggling badly with burnout and work stress for all the time this application has been going, i do not know how much longer i’ll be able to cope with work. my previous job threatened me for the amount of sick leave i took from adhd/autism related illness. i am scared my new job will do the same, because the amount of energy i’m having to put in to overcome my adhd without any assistance is killing me slowly. if i had been given the help i need sooner i would not have horrific mental and physical health from having to cope with adhd and full time work on my own.
I had to go private for one diagnosis, as my employer did not recognise this pilot as carrying any weight. Access to work, did not recognise it either, they wanted proper diagnosis. I am still unable to work.
I can’t work and after doing the profiler and essentially being told that I wasn’t bad enough for help I had to drop out of college.
I don’t work. Every time I get a job I get fired or start of consider suicide and have to leave. I was hoping that finding out if I was autistic would help with this as I could learn about myself and maybe get some help from access 2 work.
No but it definitely could as I do have challenges at work due to neurodivergence and without a diagnosis those conversations are significantly more difficult.
The entire reason I went to my GP too get an assessment was never I’m on the edge of losing my job. Now I think I might lose it.
My son is not able to get a job due to ADHD traits plus depression and no support for any of his ND issues.
I am more determined to make sure this pilot does not continue, and I am part of a neurodivergence committee at my work. The impact the pilot is having on myself and others is hugely evident in other colleagues who need time off work etc. It’s such a confusing time that it affects work and concentration.
I’m at uni and I can’t get DSA without at least a “working diagnosis” a letter from my OT ws deemed to not be enough and neither was the do it profiler report. Without help from DSA I can’t see me being able to finish my course.
I cannot work, I am suffering from severe perimenopausal and ADHD symptoms. The first stage to understanding my illness is getting a diagnosis to allow me to see if treatment helps me. I am denied this. This is discrimination. What other physical illnesses are turned away from the doctors, because the waiting list is too long?
If you have been affected by this pilot directly is there anything specific you would like the decision makers to know?
I would really like them to go through this whole process with someone who is trying to get a referral for a diagnosis and see how many steps we have to go through and how obvious it is we need help, only to have nothing to show for it at the end. This pilot doesn’t make any sense and for no other medical condition would someone be allowed to say “you probably are suffering, but because you are not on the verge of dying, we are not going to do anything about it, not now, not in 2 years, not in 5 years, possibly not ever”
I would like to ask them, what do you recommend people like me do now I cannot get an assessment through this pilot? Paying privately is out of the question. How do you see people getting the help they need if it is not through this pilot? What is the long term solution?
The screener is a start, but its out of date, and you have to follow it up. I scored highly on ASD and ADHD, my life is hanging on by a thread, I need proper help that is delivered in a method and language that I understand. I need the ability to ask questions. I need to know what technical assistants are out there that may help me, we need self help groups run by professionals, ones who understand our condition and are up to date with the latest technology, gadgets, or how to negate every day life in simple way. Throwing us to the lions and saying find out for yourself, is exacerbating the situation. This licence is expensive, and does not offer any value for money, and because of this, I will end up costing the system a lot of money, simply because you missed an opportunity to to prevent problems in my life escalating further.
I just wanted a assessment so I could help myself and maybe get some support. The profiler did nothing but make my hate myself the PDFs were of very little use and were somehow both patronising and hard to read, without external guidence I don’t understand how they could be of any help. The profiler says over and over that it is NOT a diagnosis, so really I am not better off than I was before it, if anything I now have more questions but now know I have no where and no one to help
This whole pilot has ruined actual real peoples lives
I would like to know why they are simply leaving the majority of neurodivergent people without a proper diagnosis & support? There needs to be accountability for those of us who are simply ignored. Why don’t we matter?
This pilot should never have started, please repeal it
We are real people, not just a statistic on a screen. We struggle daily and need support.
I need help, aatual help not just a questionairre and a million PDFs that tell me nothing that I’ve not already tried
My life is on hold. I am struggling to get to the bottom of symptoms which are having a massive impact on my life and an ADHD assessment is part of the puzzle. To be told I cannot even be put on a waiting list is unbelievable. My GP does not even understand the implications of your decision – he could not believe I was denied assessment when I spoke to him this week, 8 months after I filled out the Do it Profiler.
Do I not matter? Do I really have to be about to DIE before I am worthy of help? What happened to the idea of early intervention?