47. Getting an ADHD Assessment on the NHS (How long does it take and what issues can you run into?)

Unknown Speaker 0: 0:10

13 Welcome to dopamine kick, your weekly dose of positivity. We're your host, Sparky and shell. Join us each week as we have changed your habits to tackle fears and challenge your mindset. Let's get to it. Hello everyone, and welcome to episode 47 of a dopamine kick today we are going to be talking about an NHS diagnosis and what going down the NHS route looks like being assessed for ADHD.

Sparky 0: 0:14

44 If you haven't already, please consider subscribing to the podcast. You can do that by following us on whatever platform you are listening to. And if you could please leave us a review and let us know how we're getting on and what you think about the podcast. That would be absolutely fantastic. So this week, we're talking about going down the route of an NHS diagnosis for ADHD, how long it takes for an assessment and some of the problems that you can run into going down this route as well. But just a disclaimer, I will be talking about my own personal journey and my own story. But that doesn't mean that this is what an experience through the NHS will be like for you. So just keep that in mind as you are listening to this episode.

Unknown Speaker 1: 0:18

27 Okay, so, Sparky, a know what's been going on this past week and you know, it's a nightmare. It has been for you. But I thought it would be really good for us to go right back to the beginning and talk through so that anyone who is preparing to go on this journey can sort of, I suppose, get an idea of what they're going to be dealing with.

Sparky 1: 0:22

55 Okay, so my story with getting a diagnosis on the NHS hasn't been easy so far. So just quickly for those of you who don't live in the UK, the NHS is our National Health Service, and it has its good points don't get me wrong, but it also has its bad points as well. And I completely understand that the NHS is under pressure at the moment and there's a huge backlog with everything that's been going on. For the last few years. There's been a lot of waiting lists, but I do have to say you almost feels like that's just become a part of the whole NHS now hasn't it? And there's a huge waiting list. There's massive backlogs and you can't get an appointment. But the thing is, this has been going on or as far back as I can remember there's always been a backlog. I don't know if it's the same view shell but I remember that there's always been a backlog for years and years. And you know, logically I do understand why but I also feel that whenever you try to get any help on the NHS, it almost feels like unless you are dying or near death, there's a reluctancy to get you seen urgently or to help you. So I've been going down the route of getting this NHS diagnosis for ADHD. And that has come with a few problems. For example, a long waiting list that's fine, but it also comes with things like explaining things over and over again to various different people. And you definitely don't get the same service as you would if you were to go down a private diagnosis as a private patient. And the process takes such a long time. Anyway, long story short, sorry, sorry. What was your gonna say before I before I start interrupting you know, it's

Unknown Speaker 3: 0:26

39 fine. I mean, I think we're probably just gonna interrupt each other but I was gonna say so after, you know, finally been going on the waiting list and because it was initially your therapist, wasn't it, but that highlighted this. So you would have thought that that would have maybe, yes, fast track things a little bit because you know, they're already a mental health professional. It's not like you, you know, just read some stuff on Google or watch a few tick tock videos and self diagnose yourself it was pointed out to you by a health professional, but that doesn't seem to make any difference. Oh, no. You did get your assessment day didn't you? And what day was that supposed to be?

Sparky 4: 0:30

23 So the assessment day fall on the day of the Queen's funeral and because of that everything was moved around. And you know, obviously, there was a day of mourning, which I understand and actually did it. Did it fall on that day or did it fall on a different day? Or a day after that was

Unknown Speaker 4: 0:34

40 it it was the day after wasn't it? It was because I remember saying to you at the time because for those of you not in the UK that the Queen's funeral was a sort of last minute bank holiday because it was advanced warning because we didn't know that she was going to die until it happened. So with very little notice there was suddenly a bank holiday so it was a bit chaotic generally. But I remember saying to you like that your appointments the next day anyway. So what difference does it make? I understand that they rearranged all of Monday's appointments but why did they rearrange Tuesday's it was life as normal for everybody.

Sparky 5: 0:38

14 You know, I have to say I have no idea. And I still and I'm still trying to understand this but again, with the NHS I do find that sometimes that communication can be a little bit poor. But anyway, things were moved around that week. So my appointment got cancelled and I was like, Oh, right. Okay, so when do I have an appointment and I was told they will send an appointment to the post and naturally, I'm assuming because I've already got an appointment I'm going to have on quite quickly so after hearing nothing, I found the clinic again and again and again. And you know, I was taking a leaf out of your bookshelf.

Unknown Speaker 5: 0:42

54 Yeah, cuz I kept telling you every time you were saying to me I'm not I've not heard I was like you need to call them again. You need to call them and you you you did call them in that in certainly in the first week. You called them at least three

Sparky 6: 0:46

05 times. Wow. Well, obviously I was getting quite scared of you because you were putting on WhatsApp your big capital letters. We full stops phone the clinic now. So choice really. And I was like, okay, okay, I'll phone them or phone. So I found the clinic and I was told, you guessed it, you're on a waiting list. And I got to a stage where I was asking, you know, how long am I going to be on this waiting lists? For? And the only answer I got was well, you know, we'll speak to the medical secretary. And I was like, Okay, well, how I don't know what that means. That doesn't mean anything to me.

Unknown Speaker 6: 0:50

48 And they never called they never called you back. Did they?

Sparky 6: 0:54

51 Never heard from them. No, just by all your calls. And then he got to a point where she was like telling me to literally go into the clinic. And I was thinking oh, you know, do Do I really have to and she was like go into the clinic today. So I plucked up the courage went into the clinic spoke to somebody in the clinic, and basically they were like, you're on a waiting list. And then she was saying to me make a complaint because you're not getting any answers. By this point. It

Unknown Speaker 7: 0:58

21 was over a week, wasn't it? It was sort of tarnish was it 10 days, nearly two weeks since your original appointment should have been and it wasn't the fact that you were waiting you were going to have away from the moment they cancelled it. It was the fact that you didn't have a date scheduled in like surely when they cancelled your appointment they should have immediately put the next date in it shouldn't have been you know your appointments cancelled and at some point in the future someone will look at when we can get you in. That's not how it works when you reschedule an appointment.

Sparky 7: 1:02

52 Well, I mean, you would think when you anyway, I went home I actually don't even know if it was the same day. I think it might have been the same day or was it the next day it

Unknown Speaker 8: 1:06

04 was the next day.

Sparky 8: 1:10

05 I'm so glad that you're here to remind me because otherwise I just wouldn't remember anything. Anyway, I got a letter saying that they wanted to discharge me and that I'd miss an appointment and that I'd no longer be requiring their services and that I'd be sent back to the GP. And I was like what the? So obviously that sent me into a bit of a spiral and I was thinking, you know, what is the point at this stage? I can't be bothered to fight this anymore. This is just stage one. I haven't even missed this appointment. You cancelled this appointment, and everything was just getting really, really confusing. So I was assuming that they were talking about the appointment that they cancelled in the first place. So again, I'm phoning them or trying to explain the situation and try and explain all this and find out what's happening. I told them I was struggling at the moment and I actually did get a call back from a community mental health nurse. And you know, he was he was really really nice and obviously I explained all my symptoms to him and then we had a long phone call and he said it definitely sounds like ADHD and we definitely need to get this sorted and for you to see somebody I think I think we've missed out set here have we so yeah, so just just to make it super, super

Unknown Speaker 9: 1:14

24 clear. Your first appointment was the 20th of September, that was cancelled. You rang multiple times in that week and kept being told that you were just on the list. And then you got a letter saying that you'd missed an appointment on the 29th

Sparky 9: 1:18

43 or 28th Yeah, that's it. So they rebooked it for the 29th because you

Unknown Speaker 9: 1:22

47 didn't tell you that it had been re booked. Despite the fact that you called multiple times you will never told the date of your new appointment. Yeah. And then they wanted to discharge you because you'd felt to show for the appointment that you hadn't been informed about.

Sparky 10: 1:26

02 I love how you sound more angry about this than I do.

Unknown Speaker 10: 1:30

05 I just I'm so angry because I know if the roles were reversed and you will be the same the reason that you're not angry as it was or not as angry is because it's it's to do with you and you feel like you know, oh, it's only me so it's okay, it doesn't matter. But as your friend, I know how much you're struggling and I know how much this means to you and for you to just be treated like this and just be dismissed because of someone else's admin error. I'm I'm like white hot, livid. I'm so angry. Like I'm ready to march.

Sparky 10: 1:34

42 The thing is, I was really angry on the day and I just, I just felt really frustrated but but then I sort of got to a point where I was like, you know, this is just pointless. This whole thing is such a waste of time. Like what is the point of me even getting a diagnosis anyway? Is the NHS even going to listen to me? Are they just going to send me away and say, Oh, well, you know, you've had depression and maybe it's that or maybe it's anxiety, send me away with what I've already had to deal with in the past. You've just been getting on with it and I'm not going to get the help or support that I need. But then you know, once I've spoken to the nurse and He'd promised me that he'd call me back either on the same day, with an appointment or the next day with an appointment. I felt like something was happening. But it is now. I think it's been three days.

Unknown Speaker 11: 1:38

31 Maybe Maybe it's been longer. It's longer. It's five days. Is it five days? Five days? Yeah, five days since the second call you within 24 hours?

Sparky 11: 1:42

40 Well, I've not heard anything from the clinic at all. And I've just got to the stage where I just can't be bothered with it anymore. And because, you know, I just feel is this one it's going to be like through the whole process now, like the stress, but I am literally going to pursue a diagnosis through the NHS, but there are times as well. Where I feel I just don't have the energy in me to continue this fight anymore because I just feel that when you're already struggling anyway. It's just exhausting and obviously with everything else going on as well.

Unknown Speaker 12: 1:46

12 Well this is this is all part of your ADHD though this is things that anybody with ADHD will struggle with is your executive functioning, you know, constantly remembering to like, wring the clinic and chase things up. And this is all things that you would struggle with, even if your ADHD wasn't causing you a problem. Well, I

Sparky 12: 1:50

32 mean, I mean, there is a side of me that that thinking I don't want to come on here and I don't want to bash everyone and I don't want to say the NHS is just awful because I know there's amazing people that work in the NHS.

Unknown Speaker 12: 1:54

44 I don't think I think we can generalise and say the NHS as a whole I think there's one particular clinic is to blame for this.

Sparky 12: 1:58

52 Yeah, and obviously I just want to make that clear because I do really appreciate the fact that we've got an NHS and that we can go and get treatment when we need it. But when there's something wrong, but I do think that it isn't handled too well either, especially when it comes to things like mental health. I feel there's a big problem there and I feel that when it comes to ADHD, especially in adults, it just kind of seems like you're a bit of an afterthought because it's it's it's not seen as low because it's not seen as though you need immediate help right now. Yeah. And I don't know if that's just because I'm seeing as though I'm not in an immediate crisis, and I can't wait. And I do understand there's a backlog of appointments, where people need help, and there's plenty of people that are a priority for good reason. And there's people in various positions that really need that immediate help. But I think it just would be really nice to be informed about things like your appointments in a day. And I think really that's all I'm asking for. I think I think

Unknown Speaker 13: 2:02

49 that's the thing, isn't it? It's not You're not kicking off about having to wait you understood that there was going to be a way and you are happy to accept that. It's the constant not knowing it's the not being given a date, and then suddenly being told that you'd missed a day and then you don't have your next day to yes, that's something that then you have to constantly chase up and it's that added stress of pressure. That's what's that's what you're upset about. It's not the waiting you know, you've been waiting for a long time already. Yeah, but I do agree with you. I think that there is a definite lack of concern when it comes to adult ADHD. I've had a similar similar experience with my own GP. So when this all started, just before I started my therapy therapist said to me that she would like me to Well, when I had my initial triage, the triage therapist said that I should speak to the GP while I was waiting for my appointment. I spoke to them they were very helpful. They sent me lots of stuff on anxiety and started me on some medication panel, which did absolutely nothing. So what did they give

Sparky 14: 2:06

54 the panel for

Unknown Speaker 14: 2:10

57 a panel for anxiety because that's how it all started for me. I remember I was getting really anxious.

Sparky 15: 2:14

03 So they gave me this propeller. Propeller lol. Sorry. It's so early. He gave me propranolol Yeah. So

Unknown Speaker 15: 2:18

10 that the idea was that it would help to calm me a little bit so then I'd be more receptive to therapy and it would work better. But presumably because I didn't actually have anxiety. I had ADHD, the propranolol did nothing. Not the doctors fault. You know, they weren't to know that. Yeah. But then since then, I went back to them and I said, you know, my therapist as thinks that I might have ADHD we had a short conversation. And I do feel in this instance, I was slightly fast tracks because a therapist had said it to me. So I've heard of other people really struggling to get the GP to take them seriously. And I didn't have that. They were very supportive. When I described my symptoms, she said straightaway, yeah, I think you would qualify for an assessment so I didn't have to fight in any respect on that front. So I was I was really pleased with that. But since then, so this has been six weeks now I didn't I didn't expect I'd have an appointment with six weeks. I know the NHS waiting list is months to years, but I don't know where I've been referred to. So I left it a week and I rang up and I said, you know, referred last week for assessment can I just find out where I've been referred to please because I know that the wait times are really variable. And the receptionist was a bit shirty. With me made some comments about how you know, the GP had said that they'd refer me than they would have done et Cie. Again, that attitude that's not very helpful, though, is it? Yeah, I'm not I'm not debating whether the GP has done it. I'm not accusing them of not doing it. I would just like to know where I've been referred to, because that's something that I might want to change because you know, a cow go find out for you is put on hold for a bit. And then she comes back and she's like, Oh, I can't give you that information. Because I'm a receptionist. And I thought well hang on a minute ago, you said you were going to find out information. So that makes me think but yeah, yeah, and she said, Well, someone will call you back today and let you know, because the person that I need to speak to is not here at the moment, but they'll be about eight and they'll call you back. I didn't get a call. What I got the next day was a text that said that I had been referred didn't say where to, I said to wait for them to make contact. So I was like, okay, at that point, that's when I started pursuing a private diagnosis because my brain just could not cope with the uncertainty and the just, you know, no structure of that. So I sort of I didn't I didn't say anything to the doctor. I didn't I didn't delay the NHS process but I left it alone. And then I pick this back up in the last week, and I've called My GP back twice. And both times I've said that. I just want to know where I've been referred to. That's all I want to know. And they they weren't telling me it's

Sparky 17: 2:22

59 over. It's almost like they they don't want to tell you just keep saying they'll

Unknown Speaker 18: 2:26

03 call me back and then they don't call me back. And so next week, I'm going to, like chase that up again. But like I just, you know, I don't I don't understand what this what this barrier is. I don't understand why I can't know where I've been referred to. It's a can't be secret. Surely eventually I'm gonna have to turn up there.

Sparky 18: 2:30

23 Well, I mean, when you put it like that, that's quite funny. Actually. You're gonna be going there anyway, you know what I mean? What, what are they trying to hide? But I do feel like there's a lot of people that are like, Oh, wow, what do you expect? You know, there's a long waiting list, be grateful. And we know that we know there's a waiting list. We appreciate that. But I know

Unknown Speaker 18: 2:34

42 there's a waiting list. I'm not I'm not bothered about the waiting list. Like I'm I'm fully aware that the average wait time for an NHS assessment is about two years, so I'm prepared to wait that if I have to, I know that under right to choose. I could pick a provider with a shorter wait time. So I believe psychiatry, UK they're waiting only about six to eight months. So potentially there's the option that I could go with them to still get an NHS diagnosis if that's what I wanted. I don't even know if I will do that. Because obviously I have a private diagnosis anyway. I just want an NHS one so I've almost got I suppose a fallback for because it's quite expensive to go private and I don't know that I'll how long I'll be able to afford it for so certainly in the short term, I know that I can have budgeted to but you know, potentially if I stay on medication for the rest of my life. That may not be feasible. So I will eventually I think need an NHS diagnosis but I'm not in a rush. But equally just bloody tell me just told me where I've been referred to. I'm not asking for a day I'm not asking for to know who it is is going to assess me. I'm not asking for anything. I don't think controversial Yeah,

Sparky 19: 2:38

59 but I think this is the whole issue isn't surrounding NHS appointments because there's a waiting list and it's almost like you're supposed to just accept that that's what you get. And I don't think that that's an acceptable way to do health care. I do feel there should be still some level of service that we should expect. For example, you know, wherever you referred me to, it's a simple question that requires a simple answer. And I do feel that just because things on the NHS are regarded as free. We should just put up with it. Even though it's not entirely free easy because because we pay for it exactly. It's not free. Is

Unknown Speaker 20: 2:42

35 it really lack of paid for it. I've worked all my life you know started paying taxes at 15.

Sparky 20: 2:46

44 I think when when I'm talking about the NHS in general, I've just had such a bad experience with the NHS with mental health in particular in general. But I do find that it does need a lot of support right now and it does need to get better and what it does, and again this is not me slagging off the NHS workers or anyone in the NHS. I know it's under pressure. And I know they've done a great job for the pandemic. But I think the point of this is, if there's anybody out there that's listening to this right now, who's going through the ADHD assessment, I don't want you to be put off by going through this NHS assessment service. Obviously myself and Sharla still both pursuing the NHS and sometimes it can be a bit of a struggle and a bit of a fight but this is a guess. More of me just pre warning you if you're doing this what you can expect and some people have had amazing experiences on the NHS with ADHD in particular. My doctor, for example, he was amazing. He listened to all my concerns. And it was it was done pretty quickly. So you do get some amazing caring individuals. But I do think what you're saying there is correct even though you do get some amazing people. I think it's it's also just a bit of a postcode lottery as well.

Unknown Speaker 22: 2:50

00 I 100% it is yeah, it really is. It comes down to, you know, where you are, what sort of resources the clinics around you have. And I agree, I put I know I've been a little bit whiny and ranting that's just me.

Sparky 22: 2:54

20 blowing off steam. Yeah,

Unknown Speaker 22: 2:58

21 that's me venting. I wouldn't discourage anyone from pursuing an NHS diagnosis or assessment. But what I would say is just be prepared, but you are going to have to chase this. It is going to be a long way. It's not something that you can just set and forget if you do that. You know, I've heard of people who've had to wait about seven years.

Sparky 22: 3:02

43 That's not right. No, come on. I'm afraid that's just disgusting.

Unknown Speaker 22: 3:06

47 It is when you think and under right to choose. They could say well, I want to be referred to psychiatry, UK and have an online appointment. It doesn't matter where you are in the UK then. And their waiting list is six to eight months. And yet there's people who've had to wait seven years. So I think really, the point of this episode is just to say that if you are considering an NHS diagnosis, just be aware that you have to advocate and take control of your care. You can't just leave this to someone else to sort out for you. Because it's a postcode lottery. And you might be lucky and you might get seated quickly and get the help you need. But you might just be left. So you have to be responsible for making sure that things move in the direction that you need them to. If you do struggle

Sparky 23: 3:10

37 with any of these symptoms with ADHD, that can be really really hard to deal with on a daily basis. So please speak to a loved one, get them involved in your care. And if you don't feel comfortable speaking to doctors, you can always speak to a friend. I mean, I wasn't very comfortable speaking to the surgery, and she was saying to me go to the clinic and sort this out. So obviously I had you egging me on to do it. So that kind of gives me the courage to get stuff done. Even though it was really nerve racking. I

Unknown Speaker 24: 3:14

05 didn't tell you to do anything of noxious it wasn't like Arsalan and shout and like you didn't scream. Yeah, you don't have to be rude about it. But you do have to be persistent.

Sparky 24: 3:18

15 Yeah, but but I think that's one of the issues with me. I I don't like doing stuff because because I get worked up really, really easy. And then I can get I can't get my words out and then I get really angry and when I get angry. I get angry. I'm like Karen on steroids. I won't just be polite about it. I'll be swearing and shower. Yeah, this

Unknown Speaker 24: 3:22

38 is where we differ because I don't usually get to that level of uncontrollable anger with with strangers. I just work on like a persistent grind you down.

Sparky 24: 3:26

50 Yeah, you're just like, more like a grind me down and I'm more like a massive explosion.

Unknown Speaker 24: 3:30

56 I'm more like daily.

Sparky 24: 3:34

59 I'm like literally like I'm gonna get you

Unknown Speaker 25: 3:38

04 what the hell?

Sparky 25: 3:42

05 I don't know. I really don't know. It's like it well early.

Unknown Speaker 25: 3:46

10 But that's part that's part of emotional dysregulation isn't it with ADHD is that it's not being able to sorry, I think it's just because I've been up too long. We have been up for a long time. We also are not swearing on the podcast, remember?

Sparky 25: 3:50

22 Yeah, yeah, I'll just be out. Oh, yeah, I

Unknown Speaker 25: 3:54

24 forgot you can bleep it out. Yeah. Oh, this time I've been like trying hard not to swear and you could just beat them out.

Sparky 25: 3:58

31 You forgot another thing you forgot.

Unknown Speaker 25: 4:02

33 Basically every time I like, stutter or lose my word is because if I wasn't on the mic, I'd be swearing.

Sparky 25: 4:06

40 You can swear on this podcast. I just beat it

Unknown Speaker 25: 4:10

43 out. It's fine. Okay, fine. You did tell me at one point I couldn't swear

Sparky 25: 4:14

47 due to which though because then that requires too much editing. So Okay, try to be a little bit more loose with it. But if you do feel like you want to do because you feel it's necessary. If you feel it's going to help you get into the flow then you know I think we just need to end this episode. So

Unknown Speaker 26: 4:18

05 liberating. We just like to rewriters we're not even talking about the NHS anymore. So I think it's time to leave it there.

Sparky 26: 4:22

15 Well, we usually say we're going to pop something in the show notes. And I don't know what we're going to pop in the show notes this week, but there'll be some useful information about ADHD in the show.

Unknown Speaker 26: 4:26

25 Do you know what I have got something really useful that we can pop in the show notes? It's not ours. We've absolutely stolen it but I hope that they won't mind. So I've become a massive fan of another podcast called ADHD adults UK and on their website, they have some really good information. They have like a printed sheet for things that you need to take with you and how to ask your GP to be referred for an assessment. I think that's so valuable. So we really wow Yeah, it's really good. So we'll put a link to their website in the show

Sparky 27: 4:30

00 also as well. Sorry, I know she'll be saying goodbye. But just some more information. If you've got any evidence to back everything up that you're saying. Please do take this to the assessment as it will be really, really helpful. For example, I went through old school reports I've gone through letters that I'd kept from the uni days and things like bills that hadn't paid and letters from counsellors etc. Please do collect all this information and take that with you to any assessment if you can, because the more serious that you are about getting seen and going through this process I do believe the quicker your doctor or psychiatrist will act. So yeah, that's just a little piece of extra information that may be of help to you that

Unknown Speaker 27: 4:34

44 okay, all right. We'll see you next time.

Sparky 27: 4:38

48 All right, that's everything this week, guys, but if you want to carry on with the conversation, join us over on our social media platforms are on all the major channels and our handle is at a dopamine kick.

Unknown Speaker 27: 4:42

58 We'd also be super grateful if you could leave us a review on the podcast wherever you're listening, because it helps us grow our audience and help more people. Okay, we'll see you in the next one. Bye bye up Right

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