Assessment access – Your Voices

On the 26th of May 2022 we held a joint drop in session with Healthwatch York at CVS (priory Street) and then a second online drop in on the 26th of June. We have also had feedback given to us via email, voicemail, and in person alongside our google form.

To date there have been over 140 statements gathered about the autism/ADHD pilot which have been grouped into broad categories below. Use the following links to jump between categories:

Danger of misdagnosis and the mental health system
Gatekeeping, the law,and financial issues
Vulnerable people and the danger of harm
Stigma and ableism
The Do-It Profiler
Peoples personal feelings and experiences
What my diagnosis/assessment did for me
What we want to tell the ICB (opens new page in new tab)

Danger of Misdiagnosis and the Mental Health system

Because my autism wasn’t known about I suffered misdiagnosis after misdiagnosis,was put through unnecessary treatments therapies, medications, and have medical related PTSD. When we worked out that I was autistic, when I got diagnosed and got to speak to other autistic people, everything just clicked into place. I essentially lost 6 years of my life and have ongoing trauma symptoms from unnecessary, and incorrect, mental health treatment. I don’t want others to go through the same

I can see more people getting misdiagnosed with BPD and all the stigma that comes with that. I am appalled by the decision, but would like to thank the YDRF for all the work you are doing

I was trapped in the mental health service for years, they thought I had bipolar, I was forced medication, anti-psychotics, mood stabilisers, sedatives, I was locked up, restrained, traumatised. It wasn’t until I saw a psychiatrist who has experience with ADHD and realised that if been mis-diagnosed that my hell ended. I’m now off all the psych meds and on ADHD meds, and for the first time in my life I can function, I am stable, and I show no signs of “mental illness”. How many others will this happen to if they are forced to go through a mental health service that has limited knowledge of ADHD? Early intervention, early screening, early assessment, and an avoidance of incorrect diagnosis, should be the aim

Yes, because the CMHT are so efficient at creating crisis plans [sarcasm]

ust go search the #AutismNotPD hashtag and you may start to get an inkling of the damage this might cause. If we can’t get assessed for autism, and have to go through the mental health service, more and more of us will end up mis-diagnosed with the EUPD label and may potentially get damaged by it

I am utterly appalled by this idea. As someone who was diagnosed with both autism and ADHD later in life both diagnoses have been life changing and I find the idea that others will be forced to struggle like I have utterly disgusting. I spent over three decades having (and paying for) ineffectual therapy simply because we were trying to treat the wrong thing. After nine months in a psychiatric unit, countless round of NHS and private therapy, multiple brushes with so called crisis care and going through most of the tricyclics and SSRIs for “depression”, “anxiety” and an “anxious avoidant personality disorder” nothing has been remotely as effective as ADHD medication in improving my quality of life. Nothing can recover that time now but an accurate diagnosis means that I may be able to have some, even minimal, quality of life from now on rather than being utterly crippled by anxiety. Even from a financial point of view, which seems to be the over-riding priority here, an accurate and timely diagnosis would save the NHS massive amounts of time and money and free up resources in an already massively over-stretched mental health service. Of course monetary costs pale into insignificance, or should do, when set alongside the costs in human misery and lives lost to despair and suicide.

Gatekeeping, the law, and financial issues

Ignoring the issue will not make it go away. Historically these sorts of policies have at best delayed a problem and at worst made new ones.

The new pilot pathway is extremely unhelpful and off-putting to people who need help. You are essentially gatekeeping help to people who are at the end of their tether, rather than helping people earlier, and preventing them from getting to the point where they are likely to cause harm to themselves out of despair. Shameful.

its never good when services put costs above peoples lives

Autism /ADHD assessment pathways are already outdated, invasive, painful and destructive in the way they are approached, the endless waiting, and even the caps placed in some areas on the number of diagnoses made. Yet instead of working to improve waiting conditions and assessments for those who recognise that they are neurodivergent, the new changes mean that an even tinier proportion of people will succeed in being assessed not even in getting a diagnosis. The idea that people can go away and obtain the relevant help and support without diagnosis if they don’t fit an extremely narrow range of crisis and / or risk is laughable – if autistic / ADHD people could do this without formal diagnosis, why would they even bother to go through such a traumatic process in the first place!!!
There seems to be an agenda here far beyond simply cutting the number of people on lengthy waiting lists. I suspect cost-cutting and even a fear of recognising exactly how many people in the region truly do need and deserve additional support because they are neurodivergent. It’s shameful and it will serve nobody except the bean counters – least of all those who have a right to understand their identity in its entirety. Suicide rates within the ND community are tragically high, and, far from recognising and prioritising those most at risk, this policy is at great risk of pushing those rates even higher.

How is it legal to remove rights to access to treatment for a known medical condition???

I’ll be honest I do believe that the assessment process is outdated and has some huge issues, same with the mental health service, it does need a total overhaul.
However, just removing the option from the majority of people is not the answer. The process is deeply flawed, but something is often better than nothing and people deserve to have a choice.

It feels like every few weeks another aspect of medical care is being reduced or rationed. I don’t think they expect us to notice or fight back, they are slowly dismantling the NHS before our very eyes.
I do not have autism or ADHD, but I can see this pilot is wrong. And even if I couldn’t I can see the trend, eventually these sorts of policy changes will effect us all. We need to make as much noise as we can and reverse this

Autism and ADHD are both protected disabilities in the UK, in denying people for assessment they are denying them the right to those protections should they have either condition. Regardless of if they have an ‘urgent need’ or whatever ridiculous criteria they would like to apply, these people deserve to be assessed so they can access the disability protections they might be entitled to. My diagnosis has allowed me to access life changing accommodations at work and anyone else who believes they may have autism or ADHD deserve the same access. This pilot will leave people at risk of discrimination at work and school, and that doesn’t even touch on the life changing benefits of appropriate medication for ADHD which will also be denied.

This is reminiscent of trying to backpedal to when we treated disabled people like second class citizens. This is saying we are not worthy of basic healthcare and that we aren’t important enough to matter. This is purely and simple discrimination – Equality Act 2010? NHS themselves say “It is available to all irrespective of gender, race, disability, age, sexual orientation, religion, belief, gender reassignment, pregnancy and maternity or marital or civil partnership status.” Here, it proves they are no longer.

I should be shocked, but I am not… we are witnessing the end of the NHS in real time, we need to fight this

This is simply ridiculous, whoever came up with this either doesn’t understand the issue or is being purposely ignorant for the sake of money

I am really worried about not only how this will effect individuals but also the impact this will have on GPs, mental health services, and the health service at large. Simply moving or stalling the problem isn’t the answer

Vulnerable people and the danger of harm

My diagnosis literally saved my life. I didn’t have a crisis plan, I was not under mental health services, but feeling like I was broken and like I was somehow a bad person because I couldn’t do things and couldn’t fit in was destroying me. I am certain that had I not been diagnosed I would no longer be here

Gatekeeping diagnosis, and therefore support, from people is going to lead to people dying.
Surely we should be looking at earlier interventions rather than later? We should be finding ways to support people and help them to live their lives, not forcing them to prove that they are worthy of help.
People are not going to their GP to ask for an assessment on a whim, people have thought about it and struggled for YEARS, if not DECADES, before they get to the point where they feel no other option but to ask for help. To then be refused… I can’t even imagine the invalidation, the pain, the insult, the desperation.
And desperate people do desperate things.
People WILL die.

When someone plucks up the courage to ask for a referral they are emotionally vulnerable and probably desperate for support. These people may not be at imminent risk at the time of asking but I can imagine many will be after basically getting dismissed

This scheme will result in nothing but needless distress to many

This entire pilot has made me feel awful. Not only for myself but for everyone else. For the entire ND community, both diagnosed and not. We are a vulnerable community who already face difficulties, we are often people who have been let down offer and over again. To now be not only increasing the barriers we face, but worse to actually be redesigning the system to actively increase them, is just awful, painful, and discriminatory.

On paper I would never have gotten an assessment under these new criteria. The reality though is that my life was in tatters, no matter how hard I tried I couldn’t fit in and kept failing at everything. I worked so hard but I couldn’t hold down a job, couldn’t keep on top of my finances, constantly missed important meetings, everything was just too much and I was slowly falling apart.
Since getting assessed, and getting medication, I am finally something close to a functional adult. But it’s not just the medication, just knowing why I’ve struggled has allowed me to be kinder to myself. It’s allowed me to find ways to work with my brain rather than fighting against it. My life now Vs my life then are so different. People need to be able to get assessed, I can’t even put into words how much of an impact just knowing can have.

I am very worried that this is going to mirror the issues with eating disorders and people feeling that they are not “ill enough” for help. People may get desperate, people may hurt theirselves, people might just give up hope. I am very worried about this.

I may not be in crisis, but I have struggled with multiple aspects of my life over many years. If I had been diagnosed earlier then I may not have had issues with bullying, academic stress and generally feeling like an outcast. Though the wait was long, finally gaining my diagnosis was the key to understanding myself. I was finally able to ask for accommodations at work and gain some semblance of order in my life.

How are they defining “harm”? Are they meaning self harm and/or suicide? Because untreated ADHD can cause many harms beyond this. I lost job after job, had substance abuse issues, list my relationship, lost my HOUSE, I was literally on the streets with no prospects before my diagnosis, now with medication and coaching I am almost at the end of a physics degree. The change has been incredible. Often we are seen as a failure or a drain on society until we get a diagnosis and start to understand ourselves and have others understand us. We deserve this support and a chance at a productive life.

When you can’t fit in no matter how hard you try, when everything you do, or even think, is seen as wrong, when you are gaslit for your entire life into thinking everyone else experiences the world the way you do but did some reason it doesn’t seem to effect them, when all this is your existence for your entire life it has an understandable negative effect on your mental health. If a simple assessment and diagnosis can suddenly make suggestions life make sense and allow them to be kinder to themselves why would you remove this opportunity???

To my mind this goes against early intervention and ‘encourages’ people to become more unwell to qualify for support. I appreciate that there is a long waiting list and lack of funding, but surely a different approach (and way of communicating it!) could be taken by the NHS?! I’m ‘lucky’ that my employer is willing to support me without an official diagnosis, but I suspect many people are not so lucky. No diagnosis sometimes makes me feel like a ‘fraud’, but I think seeking NHS support would be more dangerous and damaging for me. I’m in my 40’s now and autism was first suggested when I was 27 – I believe my life would have been better if I could have received support much earlier. I don’t agree with the pilot pathway

I struggle to understand who benefits from this, those deemed “not bad enough” will be left feeling invalidated and in diagnostic limbo whereas those who are deemed “bad enough” will n be assessed and then I assume left to their own devices as it’s the case now… What we actually need is more community support, more functional advice, more actual physical help, and more knowledge within society to help prevent crisis’s, not more division and red tape.

I was referred for ADHD in February and have been in limbo since. I desperately need the official diagnosis so I can get help because I am not coping. My undiagnosed ADHD is causing huge problems in my work life AND home life/marriage as I often struggle to function at all. A GP previously had misdiagnosed me as depressed which hasn’t helped me in the slightest. I’m just miserable. The delay to assessment will be tormenting a lot of individuals in dire need such as my self. People who may self sabotage unintentionally and mess up parts of their lives that would be on a steady track with the right help. Pure disappointment.

Unless the decision makers have experienced the stress, belittlement, pain, invalidation, shame, and stigma from living with unrecognised (undiagnosed) neurodivergence, or from living with self diagnosed neurodivergence as that is in some ways just as difficult and stigmatized, if the decision makers have not experienced this than I don’t feel they are qualified to impose it on others by removing the chance to get an assessment from so many.

I hugely disagree with this idea of there being a minimum threshold to access, but if there was to be criteria would QoL not make more sense than waiting until someone was literally about to die or lose their kids? This literally makes no sense, we are constantly told not to compare ourselves to others, not to cpmpete to be the worst, etc, etc,etc. but then this literally encourages us to not only compare but to actively get “more ill” just to get help

There is so much research showing that untreated ADHD has huge impacts on a persons quality of life. There is also research showing the same for undiagnosed autism. A non-clinical questionaire will not provide the same improvements as an actual diagnosis – not to mention that without a diagnosis I would not have gotten DSA and to would not be at university right now as I wouldn’t have been able to do my course.

I’m one of the rare few who would actually qualify for treatment under these new criteria – after losing yet another job to ADHD difficulties, I attempted to take my own life in June 2016. I then attempted several more times because the waitlist in my area was over five years. Even after going private and receiving diagnosis, I am STILL awaiting treatment. What is the point of waiting until people are at their lowest point to intervene when it will still take years for them to actually get help? All this policy does is create more misery by removing one of the few pathways to help that neurodivergent people have in this country. I don’t say this lightly; you should be ashamed of yourselves.

If this had been in place when I was trying to get a diagnosis I am certain that it would have caused a lot of upset and have harmed me. To now be seeing friends potentially being unable to get an assessment, to see them basically being told they are too “high functioning” or not “bad enough” to get help, is very distressing.
I feel like we are being punished for something that we have no control over, being ignored or forgotten about because we are able to mask and have made it to adulthood. It is an awful feeling.

I don’t think it’s very good because sometimes people don’t show what they are struggling with they hide it from other people and autistic people like me mask our symptoms from other individuals.

The pilot is a disgrace. It goes against basic principles not to mention that it goes against NHS principles. It took me so much courage to go to the doctors in the first place, to be told I can’t get an assessment unless I pay privately was so dismissive of the daily and life long struggles I experience.
The ‘report’ produced after completing all of the questions clearly shows high results in autism as well as other conditions that, if a doctor could talk to me, I could fully understand and make my life better. So why can’t I do this?
This pilot will absolutely result in more people hurting themselves to be assessed

I wouldn’t have gotten an assessment under these new criteria. I wasn’t under mental health services, I wasn’t seen as being in danger of harm, but I was.
I was so desperate to fit in and hated myself so much that I let myself be manipulated and used by multiple people. I was vulnerable, but not in any way that the NHS saw or noticed.
My diagnosis, and subsequent coaching & therapy, helped me to gain respect for myself, to love myself, and to recognise when people were trying to take advantage of me. It genuinely changed my life.

I don’t say this lightly, but I really believe people are going to be really harmed by this, if not actually killed.

I don’t think the decision makers appreciate just how vulnerable people are when they go to a GP to ask for an assessment. You basically have to go day to another human being “hi, I appear to be a failure as an adult and can’t fit in anywhere, help?” and that is a really hard conversation to have, to them be told that you may be struggling but you’re not struggling enough, or not struggling in the right way, to get an assessment is utterly invalidating.

People think that if we have made it to adulthood without a diagnosis then we don’t need one because we “aren’t that bad”, but this isn’t true. Eventually we all got burnout from masking our our responsibilities and day to day life becomes more than our internal adjustments can handle. This is when we got crisis, when we end up with maladaptive coping mechanisms, addictions, relationship breakdowns, unemployment, and even suicide. Just because we are adults and have managed to camouflage doesn’t mean that we are not struggling and don’t need help before the inevitable crisis hits.

There is ZERO correlation between severity on a self inflicted injury and intensity of distress. Seriously a very casual search will bring up tons of research into this and that research proves over and over that the severity of the injury is not related to the distress (or “illness”) of the person. There are prior or there in unimaginative distress who have never been to A&E and so who’s harm is not documented. Some of these people may even go on to die from suicide, despite never having seemed at risk to services. What if these people? According to the criteria they should be able to be assessed, but in reality they will slip through the net. I disagree with this pilot for so many reasons, but this is a key one as it feels like they just haven’t even thought about so many of the people who they claim to be looking out for. Either they haven’t thought about them, or they are displaying a woeful lack of understanding about self injury, I’m not sure which would be more worrying

This has harmed so many people, and will continue to do so. Even if reversed the damage is done, this should never have happened

I work as a peer supporter and so KNOW this has already hurt people who feel the need to “prove” that they deserve an assessment and so have engaged self harm.
This needs to be repealed now

You will cause deaths. For people suffering with ADHD, intelligence is not affected in the slightest. The entirely unnullified effects of a downward life spiral that cannot be controlled due to a lack of access to diagnosis, support and life-changing medication will lead to an inherent rise in suicide. Nobody asks for a condition that makes day-to-day life an utter impossibility. Selectively treating disabilities in modern medicine is a very dangerous and extremely disturbing path to walk down by choice.

I would have qualified under this criteria, so I guess people would assume that I am ok with it, but I am not. Yes I was suicidal, yes I had almost died more than once, but I honestly feel that if my ADHD had been caught earlier I would never have gotten to that point. So of course I am in support of early intervention, early assessment, early support, leaving people to suffer unnecessarily is simply cruel.

To my mind anyone who has felt the need to go to their GP and ask for a referral is “in need” enough to deserve said referral. Everyone I’ve ever known who has gone for an assessment agonised over it for months before they went to their GP, in most cases they only went because something in their life forced their hand. A non-clinical, non-diagnostic, questionnaire wouldn’t have helped any of them

I saw a study a while back that showed that NT people will see ND people as being untrustworthy and will naturally dislike them even without knowing that they are ND. So we are treated badly even when we don’t know about our ND status. Can you imagine what this is like? Never fitting in, being treated like you can’t be trusted, having you thoughts and acts judged, but never knowing WHY? It’s soul destroying. We need to be able to get an assessment so that we can understand ourselves better and learn that we are not broken, useless, lazy, or any of the other things we are told for our entire life.

I’ve spent the last few months watching friends being hurt by this. Not only by the invalidation and dismissal, but also by the lack of communication leading them unsure as to where they stand and not knowing what they are meant to do. It’s been devastating for our entire community

The threshold for care, let alone a crisis plan, is so high that many people die before they get there. I mean that might be the “genius” in this plan I guess, afterall we can’t be a “drain on the system” (or whatever it is they fear) if we are dead.

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.

What they have not taken into account here, in there’s a few things, but one of the big ones is the definition of being at risk of harm. I work with people who self harm, many of them will never do damage that needs them to present to A&E, many of them will never tell their GP about it, many of them are unknown to the system, so these people won’t be seen as being at risk as there is no paper trail. Self harm is deeply stigmatised and misunderstood, just because someone doesn’t require stitches does not mean that they are not being harmed or that they are not in distress. There is no proven correlation between severity of injury and depth of distress or the amount a person is struggling. Some forms of self harm are more likely to require medical input, but for many their learn high levels of first aid very quickly or develop a small support network that doesn’t involve going to an actual hospital. Then when people do present at A&E their injuries are not always recorded and self inflicted. My point is where is the definition of risk? Where is the overhaul of the system to stop people falling through the cracks? Where is the safety net? So many people are at risk that the system can’t identify, this entire plan is a recipe for disaster.

Absolutely vile that this is being done and considered. As someone diagnosed late, I was let down in every single aspect of my life from childhood to adulthood, and this proposal will ensure that this failure continues for many people. It is discriminatory and so incredibly shortsighted, it will have a hugely detrimental impact on the community, and the mental and physical health for the people who are declined.

I have been in and out of mental health services for 10 years and in that time i have been very ill. I have definitely been at risk, hospitalised more than once, yet I do not have a crisis plan so I wouldn’t be seen as “in need” of an assessment. I’ve known multiple suicidal people without crisis plans, one even died and was never given a crisis plan. Did anyone check the threshold for being given a crisis plan before coming up with this idea?

This whole idea of essentially forcing people to complete in some sort of disability/crisis olympics is very damaging.
If someone feels that they are being affected by something enough to warrant asking for help then they should be able to get help, it’s not up to someone else to judge their struggles as not bad or serious enough. If someone needs help then they need help, not fobbed off with a none clinical questionnaire

Not being able to access the evaluation procedures my family members haven’t been able to receive a diagnosis (or the all clear suggesting something else needs attention). Access to a diagnosis and eventual mediation to support ADHD would be life changing for my family.

The decision to limit referrals to those in some form of crisis is in no regard a solution. At worst this will only serve to increase the proportion of undiagnosed individuals who end up in crisis.

Any adult looking for an assessment is an adult who has been called by their school, failed by family, failed by prior doctors, maybe even failed by employers and society at large. To fail then again by invalidating their struggles is nothing short of negligence

Stigma and ableism

As much as i love the idea of a holistic approach and a world where we don’t need labels, where everyone is just accepted for their differences and people can be catered for on a needs basis, we do not live in the world. In this world we need a diagnosis to get support, we need that but if paper to access help, we need to know why we are different so society doesn’t label is as lazy, useless, pathetic, a failure etc. In this world priory need to at least have the option. Society needs changing first, changing services first is doing it backwards.

This change demonstrates a severe lack of understanding of ADHD. The fact that the NHS is systematically unable and/or unwilling to take the time to educate themselves on a neurodevelopmental disorder is alarming. Would you do the same with diabetes? Heart disease? Multiple sclerosis? Cancer? Just like ADHD, referrals and diagnoses for these conditions are rising. Yet you are choosing to create unnecessary obstacles that prevent patients with undiagnosed ADHD from getting the help they desperately need. Why?
Yes the NHS is overwhelmed. Yes there is a lack of funding. Neither of these facts condone turning away patients who are struggling with a congenital and chronic condition that affects all aspects of daily life. No one should have to reach the point of harm “today” in order to be heard.
Educate yourselves. ADHD is a brain disorder. ADHD is real. Refusing referrals and assessments will not make any of this disappear.
Do better.

I don’t think other life limiting conditions would ever see this kind of treatment. No other condition would have someone say they needed to stem the flow of diagnosis. In fact its always quite the opposite, early diagnosis leads to better outcomes. In my case, I would probably be a contributing taxpayer now rather than unable to sustain a job throughout my life. I am a late diagnosed female with ADHD and I am appalled at the callous disregard given to people who just want a chance to function in society.

This is so ridiculously ableist it’s not even funny. Without my ADHD medication (which I needed a diagnosis for, obviously) I would never be able to hold down a job. How do you expect people to function without life-saving medication? (As in, medication that will save your life from being homeless and unable to work.) You would never get away with doing this to any other condition – imagine telling an epileptic that until the exact moment seizures become imminently life-threatening, they couldn’t even APPLY to be on a WAITING LIST to receive medication. That would be considered outrageous. This will ruin the lives of so many people who already struggle just to get basic actions done on a daily basis, and it puts York behind pretty much every other developed nation in the world. Astoundingly shocking and shameful decision, and whoever made it should resign.

This is just so unfair, like seriously if this sort of thing was proposed for any visible disability there would be an uproar! But no, because you can’t see it issues, because society wants to believe that we that we are just lazy and useless, that somehow is our own failing that we struggle, because there is this idea that we can just buy a diary and magically be cured, this sort of thing can be pushed through and noone cares

Do they realise just how stigmatised and dismissed self diagnosis is??? There are reasons why we go through the ridiculous diagnostic process. Honestly if self assessment and a few lifestyle changes were enough very few would put ourselves through the stress of assessment

Lack of communication and transparancy

Just saw about this on an Instagram live so came to check it out. I live in York and have heard NOTHING about this. It’s obviously not been communicated well. My son is on the waiting list for an ADHD assessment and I am autistic myself, we know many ND people and yet have heard nothing. Thankyou for making me aware of what’s going on, I find the lack of transparency and communication very concerning

This has all been communicated terribly, neither my GP nor CPN seem to be able to tell me the process, neither send to know what happens after I do the profiler, I’m getting conflicting information from everyone I speak to. Honestly this is stressing me out and pushing me towards crisis more than not knowing why I am this way ever did. If it wasn’t for the fact that the CMHT are insisting that I go through the process (they feel that I need an assessment before they can help me any further) I just wouldn’t bother with all this.

Not only is this a ridiculous and harmful idea it’s been communicated so badly… Thankyou to YDRF for actually making us aware of what’s going on and communicating in a way we can understand.

I was sent the profiler thing and I don’t understand what I’m meant to do. I rung my GP to ask but the receptionist didn’t know and I didn’t want to waste an appointment. I went to the Healthwatch survey but got overwhlemed. This pilot is awful and I’m so confused as to what I’m meant to do.

Honestly I cannot get my head around this. What does criteria 2 even mean??? And surely it’s better to get people access to support BEFORE they are about to lose their kids or kill themselves? Ok yes there is some support out there without a diagnosis, but there isn’t much, and without access to the ND community is almost impossible to find.
This just feels like a half thought out idea that will only serve to move the pressures from one overwhelmed service onto other overwhelmed services.

Well this got snuck though didn’t it? A message for the commissioning bodies – of you are going to do stuff like this at least tell people, all this secrecy and half truths makes you look suspicious

What bothers me most about all this is the lack of transparency, the lack of communication, and the lack of respect

The fact the pilot ends literally TOMORROW and that there hasn’t been an official update yet is just inexcusable!

I am upset and angry. I am so sick of decisions being made about us without having our input. I am sick of things being made difficult on purpose. And I am really annoyed at the way this has been communicated, if it wasn’t for the YDRF most people I know wouldn’t even know this was happening!

The Do-It Profiler

I’ve seen some of this advice that the profiler gives out, it’s patronising, useless, insulting and really I can see how it could be dangerous. Some of it shows a totally lack of understanding of what autism and ADHD even are, I can’t believe THIS is being supported by professionals who should know better

I was sent profiler. I can’t do it. It too long. Too hard. Don’t understand how to do it. So now what? I asked for help filling it in and was told there isn’t any. I wish I’d never asked for diagnosis. Friend says to ignore the profiler and go to my GP again after pilot. The profiler is too hard

Whilst it is a useful starting point, for instance it suggested ADHD / dyspraxia to me, it is not sufficient and not good enough. It leads to more questions than it answers and provides little-to-no idea of next steps other than, “You should seek diagnosis,” when that was what I was trying to do in the first place. It explicitly states that it is not a diagnosis, making it worthless for seeking medication or workplace adjustments, let alone other formal / legal recognition. This could easily be a standard first step for anyone interested in diagnosis – it should just be publicly available – but then it could/should automatically suggest diagnosis to your GP or be used as evidence as such. Instead, it is being used as a substitute, whilst it even explicitly states that it is not.

Two words:
How can we expect people to do a computer based, online, questionnaire when a lot of people don’t have access to a computer/the internet?

I have been helping my friend with the profiler recently (I have sent her the healthwatch link) and honestly it is not fit for purpose. Even between the 2 of us we really struggled with many of the questions, and now looking back at it I think it may have been a waste of 3 hours as I don’t think she will be seen as eligible for an assessment despite how much she is struggling. A lot of the questions were ambiguous or just really difficult to answer/judge, I feel like expecting anyone to do this questionnaire on their own and for the results to be accurate is unrealistic. This whole process has left my friend feeling very negative about herself and extremely stressed. There is also a feeling of “now what?” as nothing in the functional advice was new information or useful so she is now no better off than she was 3 hours ago but now with the addition of being stressed and confused

buy a diary? buy a diary? So what you’re saying is that I can be struggling to keep a job, struggling to function day to day, have my relationship break down, and fell so desperate that I go to a GP and what I’d get in a 2 hour questionnaire that tells me that I need to BUY A DIARY???? This is ridiculous and needs to be stopped

getting an assessment is such a long and stressful process, but making it so we don’t even have the option is just wrong. Could the do-it profiler not be used as a way of helping people while they are on the list? ie. send people the profiler at the start of their wait as a way of helping people gain support while waiting, some people may even decide that the profiler is enough and ask not to be put ont he list for an assessment but at least this way the patient will still have an input and be in control of their own care.

Peoples personal feelings/expereinces with the pilot

It is incredibly frustrating that after several years I finally got the courage to speak to my GP for a referral. Between requesting the appointment and actually getting to speak to a GP this new system had been introduced meaning it was all for nothing. Once again reminds me why there is no point in seeking assistance and I should just carry on as I am.

It is incredibly frustrating that after several years I finally got the courage to speak to my GP for a referral. Between requesting the appointment and actually getting to speak to a GP this new system had been introduced meaning it was all for nothing. Once again reminds me why there is no point in seeking assistance and I should just carry on as I am.

I can’t afford to go private and there’s no way my GP will be willing to refer me now. I asked them about right to choose but apparently even that is affected – something about funding? I really just don’t know what to do, self diagnosis isn’t enough to get any help

I’m on the waiting list and I understand that technically this won’t effect me, but psychologically it has. I feel such guilt for being on the list, for taking a space from someone who might need it more, deserve it more, I feel that maybe I just needed to try harder, maybe I’m imagining my issues, maybe I really am just broken and useless. I’m really struggling with this at the moment.

I think it’s wrong, and I’m really hurt that this is happening

I already find it hard to see a GP about day to day health issues. I contacted late last year about beginning a diagnosis path for ADHD, but had to wait for the appt for so long I had to use that appt time for a more urgent matter. My work have asked me to get an ADHD diagnosis to potentially help with a few work related issues, but now I’m too intimidated to even try.
Everything already seems so hard, the GP surgery never want to speak to us anyway, they tell you to use the website, I can’t focus on that, the form is so long, we wait forever and then they are so abrupt on the phone or fob me off to a video doctor who doesn’t have my full file and can only talk for 6 minutes. It seems to be sabotaging a group of people who already struggle with executive function and now making it impossible to get help. The path and the process seem so long and so focussed on pushing you back to the start of the queue, it’s genuinely overwhelming.

I’m just not going to speak to my GP until after this pilot, I have been meaning to go for literal years but it’s one of those things I just don’t get round to – which ironically is part of the issue. But now I am just going to wait, my employer is getting fairly insistant that I need an actual diagnosis (especially since that panorma episode) but I would rather find a way to stall them then potentially get trapped in some sort of limbo where I have no diagnosis and can never get a diagnosis because someone somewhere thinks that a self assesment form and some “functional advice” is good enough

I am upset to know that my city sees people like me as essentially disposable, as collateral damage. I am very upset to think of people within my community being potentially harmed by this.

I have friends who are just so upset. They need help and support not to be fobbed off with some online test.

I am very upset by this decision

A few years ago after my nephew was diagnosed with ADHD I started reading up on the topic, almost instantly things just fit so much of my life made sense, so many of the things I struggled with, so many of my memories from childhood, everything it just fit. So I went to see my GP only to be told that it’s not ADHD but more likely a lack of discipline and using my phone too much. Since then I’ve been through counselling, coaching, therapy, even paid for private treatment. I then finally circled back round to the ADHD theory and went back to see a GP who took me seriously and agreed that is likely that I may have ADHD but now there’s this pilot in place meaning that I’m very unlikely to get an assessment. To say I’m pissed off is an understatement. I’ve lost 3 years of my life because of the ignorance of one GP only to now be finally taken seriously but have any chance of finding out more blocked by a decision made in some back room. Who are they to judge who is and isn’t “bad enough”?

It’s getting harder and harder to live as an ND person in this world.
I am not diagnosed, but it’s been suspected that I have ADHD for a few years. My GP agrees that I probably have ADHD but when I was given the questionnaire I lost it so the referral never happened. I’ve looked into going private and have been saving up but after the panorama program I’m not sure that’s worth it. I don’t want people thinking I’ve bought a diagnosis or thinking I’m just after medication or something. I would go back to my GP but there’s no point now as I don’t meet these new criteria

My care coordinator was going to refer me for an autism assessment, but after hearing about this I’ve asked them to delay until after the pilot. I bet I’m not the only one to have done this, they are in for a shock in July when they get 3 months worth of referrals. Though if they didn’t see that coming then they deserve it to be honest

I cannot even put into words how upset this makes me, I can’t even imagine how damaging this may be.

I am not happy with this. It is coming about just as I have worked up the courage to even speak to a doctor about proceeding with a referral, I’m very unhappy that this may be a block in me finally being able to understand whether I do have adhd.

We already have to fight for support or any sort of adjustments, now we have to also fight to even get the diagnosis??? There is only so much a person can fight for before it’s just too much.

I was already angry that nobody picked up on my neurodiversity and I was left to struggle on until I worked it out myself in my 30s. I felt like things were slowly improving in terms of recognising and diagnosing ND in women, but now this has happened. I’m lucky to already be on the waiting list for an autism assessment, but I now suspect I also need an ADHD assessment. I’m fairly comfortable financially but the cost of a private assessment is still totally out of reach for me.

The fact this is happening is upsetting and painful to myself and many others

This is insulting and patronising, I am amazed that this has come from a “care” board

The pilot is a disgrace. It goes against basic principles not to mention that it goes against NHS principles. It took me so much courage to go to the doctors in the first place, to be told I can’t get an assessment unless I pay privately was so dismissive of the daily and life long struggles I experience.
The ‘report’ produced after completing all of the questions clearly shows high results in autism as well as other conditions that, if a doctor could talk to me, I could fully understand and make my life better. So why can’t I do this?
This pilot will absolutely result in more people hurting themselves to be assessed.

What my diagnosis/assessment did for me

I was diagnosed with autism 2 years ago at age 53, it explained so much of my life. For the first time I understand myself, I have been able to be kinder to myself, and I’ve gotten adjustments at work which have helped me to become so much more productive. I am also off the anti-depressents which have been a constant in my life for over a decade. Not being at risk does not mean that we don’t need to understand ourselves

When we force ND people to hold themselves to NT standards we end up with traumatised ND people, but when those ND people can’t even find out that they are not NT we will end up with gaslit traumatised ND people who will quickly reach burnout

My diagnosis saved my life. It’s appalling that others will be denied this

Without my diagnosis, without my meds, without my self understanding and acceptance, I don’t think I would be able to hold down my job let alone function as a productive adult. The impact of this decision on people’s quality of life will be immense and negative.

I don’t know where this idea that we all want to be different, want to be special, want to be ill, came from. But it’s just nonsense.
I would give ANYTHING to be “normal” this whole being different thing has ruined my life in so many ways. But seeing as physically changing my brain, changing my neurology, and changing my biology isn’t possible the next best thing was to have an explanation. And you know what? Just knowing and understanding why I am different had helped immensely. Yes I still struggle with lots of things but I no longer hate myself, no longer feel like a failure and no longer want to die. Diagnosis saves lives

I think this is ridiculous. My autism assessment changed my life and everyone deserves an opportunity to get their voice heard and their experiences validated. The world is richer with neurodivergent voices and everyone deserves a right to a diagnosis.

It is devastating reading all of these comments, and to see so much of my life in it. I am a 41 year old woman, late-diagnosed age 35, after life-long mental health difficulties. To date, I’ve had 4 severe breakdowns, had to leave 5 jobs, have been practically homeless twice, and have gone through the trauma of crisis team services twice. Not to mention the trauma of turning up at A&E twice, once just after diagnosis due to lack of support, and once due to self-harm related to an undiagnosed eating disorder. Unless you’ve gone through your life feeling different, and terrified because you don’t why, it’s hard to appreciate the benefit of diagnosis. Unless you have navigated the crisis team process when you feel close to ending your life, you can never understand the pure terror of facing a health care system that doesn’t understand your needs. Even with diagnosis, I am still fighting every day to get the benefits and support I am entitled to. I’m still explaining autism to every health care practitioner I meet, and am exhausted with the sheer volume of self-advocacy necessary to attain a basic standard of living. Without diagnosis, a person stands no chance. As many people have said, I doubt I would still be here without my diagnosis. Things have gotten as bad as they could possible get, and I am left with so many scars. Literally, I am 41, I can’t work, I am in a precarious housing situation, have severe mental health issues, and have several chronic health issues related to an eating disorder. All a consequence of not having a diagnosis until age 35. People often ask me why I don’t have children and it makes me sad – I haven’t felt able to start a family because I have struggled so much with basic living for so long that it seemed out of the question. My periods also stopped because of my eating disorder, which was completely related to being autistic and undiagnosed. Basically, years of misdiagnosis and late-diagnosis have massive consequences, affecting a persons whole life in so many hidden ways. People look at me and think because I have a PhD and appear “high functioning” that I must be ok. I’m not. I’m piecing my life back together at age 41, or rather, trying to find out what kind of life I can have, and what life I have lost. There is grief in all of this. It makes me extremely upset – literally to tears – to think of another autistic / ADHD person experiencing this same pain and terror, and worse, having to get to this point to even start the process of getting help. We need to keep sharing our lived experience, it’s our best asset in terms of fighting this decision. At the very least, we need answers in terms of why it has come to this, because it is more than just lack of funds. Surely it is also a lack of proper governance and practice in terms of the commissioned service also? We need to press for answers to questions that the commissioners and services don’t want to answer.

Before I got my diagnosis my relationship was in tatters, we were trying to stay together for the sake of our son but the atmosphere was toxic. We were not communicating properly and whenever I brought up that maybe I was ND my partner would say I was making excuses. But since assessment and diagnosis they have started to understand, they now believe me when I express difficulties, they’ve read books on the topic, and we were recommended a couples counseler with ND experience. Like it or not we live in a world where self diagnosis is not accepted, not seen as valid, and sometimes that official diagnosis is needed for validation (from both the self and others). Without getting my diagnosis I am almost certain we would have split up, but now our relationship is strong.
Having the option to be assessed, and therefore understand yourself better, is so much more than crisis avoidance. This is our lives they are playing with.

Back when I went to my GP to ask about getting assessed for autism I was essentially certain that I was autistic. I had done online screeners, read books, spoken to autistic people, I was basically sure.
But I also had huge levels of imposter syndrome, and this imposter syndrome was a huge issue, I got depressed (or more depressed), I isolated myself, I hated myself, had I just gotten another screener rather than an actual assessment I’m not sure I would have coped.

A few years ago I was assessed for autism, and it turns out I am not autistic, however the assessment was still helpful. It ruled things out, it helped me to think about the things I struggle with and to learn things about myself. So even though my assessment did not come to a diagnosis is was still worth it and without it I would still be wondering and wouldn’t have managed to find the treatment and support that has allowed me to get back into work. Removing the access to assessment will harm many people, both autistic and not

Finding out that I am AuDHD has been a turning point in my life, it saddens and worries me that others may not get the same opportunity to turn their lives around.

As has been said by so many others I may not have been at crisis or in danger of having children removed, but my ADHD diagnosis still saved me. I was very close to losing my home, I couldn’t hold down a job, I was what you might call a “functional alcoholic” and I was struggling internally with so much self criticism and feelings of failure. When I started on meds the change was huge, it was like someone turned down my brain, suddenly I could focus, I could think, I could remember, simple things that I’d never been able to do felt easier. I have had to have a lot of therapy to get past side of the ingrained self hatred and to move past all the missed opportunities, but without the diagnosis this would not have happened. People don’t need to be in the verge of suicide to be suffering.

Just read the news about the restriction of access to diagnosis of autism and adhd for adults and I’m horrified. I was diagnosed with ADHD in 2020 through right to choose and my diagnosis (including medication) has significantly improved my quality of life- my anxiety is lower, my job performance is better and my parenting is better. I am horrified that lives may well be lost as a result of this as untreated adhd can lead people to struggle with saftety, self care, remembering medication and looking after their health.

I am appalled that aid is being cut off to those seeking diagnoses. Having personally gone through a diagnosis of autism as an adult I found that it answered a lot of questions I had about my self and explained a lot of my traits in a way that made me feel unashamed. It is unfair that these answers are going to be withheld from others in need.

My adult autism diagnosis has changed my life for the better after decades of ineffective mental health interventions. I would never have qualified under these proposed criteria, and would still be yoyoing between bouts of anxiety, depression and burnout. The cost of a lifetime of these interventions and the antidepressants I used to be on would far exceed the cost of an autism assessment and the accommodations I now have access to. This decision is shortsighted and will in the long term cost the NHS more in increased morbidity for undiagnosed autistic people. We should be widening access to diagnoses, not restricting it.

This is absolutely appalling! My ADHD diagnosis has explained everything for me – all the things that never made sense in my 31 years. And I haven’t been angry it’s not been picked up earlier
because I’m female and my parents, teachers etc they didn’t know any better. But we absolutely know better now. And I’m appalled that despite knowing better people are being actively forced by the so-called “health” service to suffer and live with a poor quality of life that will no doubt lead to future health concerns. And maybe if people like me and all the others who have been failed by the lack of knowledge in the past hadn’t been failed in this way we wouldn’t be in this situation.
I cannot fathom the reason this pilot was implemented as surely its clear to all that blocking referrals for ADHD and autism assessments will only increase demands on other aspects of the health service when people come with depression, anxiety, addiction and other mental health issues that then lead to physical health conditions. I cannot comprehend how decision makers could be so short-sighted and obtuse.
Even if this wasn’t the case, I’m disgusted by fact that this decision is just outright inhumane. The NHS has a duty to care for patients and the NICE guidelines exist for a reason. These state that only a specialist can diagnose these conditions and implementing this pilot is a clear violation where the trust is playing God and making decisions it shouldn’t be allowed to make. I can’t ever imagine this happening with a physical ailment so why is it ok with one that impacts on mental health? Why should someone have to be on death’s door to get help?
I’m disgusted that this pilot has even been considered let alone implemented and it makes me ashamed of the NHS – something I never thought I’d say as I’ve always been so proud of our NHS.

I am so thankful to already have my diagnosis, but I really worry for those who are only just starting their journey as these changes could make a difficult process so much harder.

I had the means to get an ADHD diagnosis through a private specialist. It cost a lot and required a lot of organisation and motivation. I could maybe understand limiting the medication to only those who had more extreme cases, but to completely ignore everyone who is not suicidal is ridiculous. The medication has helped me, but just knowing and with he help of resources, being able to look introspectively at myself has helped me professionally and socially. Since my diagnosis I’ve felt more in control and aware of myself than ever before. I feel sorry for everyone affected by this.
Ignoring the issue doesn’t make it go away.

The following responses directly reference self harm, suicide, and other potentially triggering experiences. Although these topics may be uncomfortable or difficult to read we feel that it is important to share and spotlight the harm that this pilot is causing.
Please ensure that you are in a safe headspace before continuing

So what we are saying is that unless I go slash up my arms in not getting an assessment? Despite the fact that everyone from my support worker to my psychiatrist, from my college tutor to my friends, are certain that I have ADHD, unless I turn up to hospital in need of stitches or about to die I can’t be assessed? Ok… Good to know

I might as well just go kill myself then as without a diagnosis my workplace won’t make adjustments and without adjustments I may lose my job and without my job I’ll be homeless

I’ve done a lot of things but still don’t have a crisis plan. But I definitely need to be assessed for ADHD, every support service I have contact with agrees and say they can’t do anything else for me under until I am assessed. I don’t want to sound like I’m threatening anyone, but the reality is I am now going to have to escalate my harming in order to get any sort of help

So, if I want to get diagnosed with autism or ADHD (both of which I score highly for on self diagnosis tests, and I’ve been procrastinating on doing for years), the best option for me is to give up not self harming?

I am 3 months free from self harm, but now thinking I may need to start again in order to be taken seriously

This happened to me with my “atypical anorexia” otherwise known as “nope, you’re not ill enough go away”. I can’t go through that again, I just can’t. I honestly don’t think I’m going to be able to survive this.

6 thoughts on “Assessment access – Your Voices”

  1. Iain Byatt-Smith

    I have just read that you are now making it almost impossible for people to have an autism/adhd assessment which frankly is barbaric. I have only recently been diagnosed for ADHD, a condition that has impacted every facet of my life. Untreated ADHD is miserable and without my diagnosis and meds, I doubt I would still be in this job, having been let go from two previous jobs because of the condition. This is a disgusting decision and frankly i would like to know every single member who suggested this was a good idea, as I will personally email and call every single one of them and ask them how they sleep at night. REVOLTING!!!!!!!!

  2. I am currently awaiting an assessment for adhd at the age of 37. From the outside i am functioning. I have a family and a full time job. On the inside i am broken. I am desperately trying to keep the plates spinning a bit longer whilst i wait for a diagnosis. By the time I am ill enough to meet these ridiculous new criteria i will be costing the state a fortune. If I had been assessed years ago rather than being fobbed off for years it would have saved the state a fortune. Even if you don’t care about the people (and its clear that whoever designed this pilot scheme dont) this doesnt even make sense for the economy.

  3. This is a terrible idea. My diagnosis in 2022 improved my quality of life so much, and it is reprehensible to try to restrict access to life changing diagnoses and treatment for anyone other than the most dire cases. I have low support needs autism, however my life before diagnosis was drastically different. Going ahead with this pilot scheme would lead to thousands of people not knowing what is happening inside their brains, thinking there’s something wrong with them when in actual fact they are developmentally disabled. I can guarantee there would not have been a question of reducing funding in this way for physical disabilities. This is sending the message that invisible disabilities ‘don’t count’ and are less important and debilitating. All in all, this is a disgusting idea.

  4. Rhys David Eyles

    I may not be in crisis, but I have struggled with multiple aspects of my life over many years. If I had been diagnosed earlier then I may not have had issues with bullying, academic stress and generally feeling like an outcast. Though the wait was long, finally gaining my diagnosis was the key to understanding myself. I was finally able to ask for accommodations at work and gain some semblance of order in my life.

    The decision to limit referrals to those in some form of crisis is in no regard a solution. At worst this will only serve to increase the proportion of undiagnosed individuals who end up in crisis.

  5. I feel absolutely worthless because of this decision.
    The autism act 2008 set a statutory duty on NHS organisations and local authorities to provide appropriate services to assess autism in adults and to support autistic adults post diagnosis.
    My son was diagnosed Autistic and it explained so much about my own lifelong struggles and torments. I have, since childhood, engaged in unhealthy, self damaging behaviours in order to try and cope with the horror that my life has been. I stopped self harming, outwardly, when my Son was born, but those urges are with me again because of the utter hopelessness I feel after finally asking for help, for no hope to be there. How cruel that my only clear pathway to a diagnosis is to self harm seriously enough to be hospitalised and be under the care of a mental health crisis team. Which would inevitably lead to me losing my job, my home, maybe my son.

  6. Rebecca Hughes

    My husband was recently diagnosed Autistic and ADHD, for years he suffered with misdiagnosed depression and anxiety, put on antidepressants that only had mild to moderate effect. Every part of our lives was difficult from work, to parenting, to our marriage. I doubted we would survive at all at some stages. Having the diagnosis has been so life changing. He understands himself better now, he has work place accommodations, we have been able to adapt our lives and put in place the knowledge to know why his struggles which emotionally has been a huge help. Most importantly he has been able to access ADHD medication. This little pill every morning has made more of an impact than all the antidepressants he was ever on. It helps him focus, do his job more effectively, parent the children with more patience, be more connected in our marriage, help organise the household bills and chores and be more emotionally regulated than he has ever been in his adult life. Without this diagnosis I fear he would have wasted more money been put on more antidepressants that were never going to work, continued to struggle at work and the emotional toil on the children and marriage is untold. These diagnoses are literally life changing for people, it helps prevent more people accessing mental health services, keeps people in work and prevents the breakdown of families, all while saving tens of thousands across health and social care. This is the ultimate in preventative care. To restrict access to these assessments is incredibly short sighted and harmful and is only going to cost more money down the line.

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