Self Neglect

SPEAKER_01 0:12

Hello and welcome to the Home of Medicine Podcast, a podcast in association with the Royal College of Physicians Edinburgh. I'm Dr. Amy Burbridge.

SPEAKER_03 0:21

Hello, I'm Dr. Ben Lovell.

SPEAKER_01 0:23

And Ben, I have a case for you.

SPEAKER_03 0:26

Yeah, it's your turn.

SPEAKER_01 0:28

Now, I've thought for quite a long time about talking about this case. Now, this happened a long time ago, but it really lingers with me, and it's often one of those cases that for some reason just pops into my head every now and then. So I hope that it resonates with you, and I hope that it resonates with the listeners. I first met this patient many years ago in my medical journey. 32-year-old male. First time I saw him, that he had an incidental finding of a hemoglobin of 29. That's all I'm going to tell you.

SPEAKER_03 1:14

So when whenever we get an incidental finding, my first thought was, well, what were we looking for? Why did he have a blood test? He must have got someone's attention and they ordered an FBC at some point. So there must be a presenting complaint of some description, even if there was nothing related to this. Um 29 is excruciatingly low. I've seen a 31 before. Never seen anyone in the 20s before. And I think this would be, of course, I've got a lot of thoughts. I'd be interested to talk to the patient and say, do you feel all right? Do you feel a bit tired? Because they are profoundly anemic. And if this is a gentleman who has walked into a healthcare facility and is, you know, ambulant and upright, you think they must have been working on this anemia for a period of time and have slowly adapted and adapted and compensated and compensated bit by bit. I'm sure he must feel unwell. Um, but uh I wonder if this has been a chronic process we found out for the first time. Because if I suddenly dropped my hemoglobin 29, I would be probably, you know, pre-morbid. So I doubt this is someone who is having an acute hemorrhage, either an external exsanguination or an internal hemorrhage such as the GI acute GI bleed, because they'll be profoundly unwell and hypotensive. Maybe he is, you haven't told me. But that's just what I'm thinking at the moment. Um, if the the person actually was asymptomatic, said I feel fine, then this has got to be a spurious result, and we have to repeat it. Surely this cannot be compatible with uh someone who is upright walking, talking, and feeling very well. So those are my initial thoughts.

SPEAKER_01 2:55

Okay, really interesting that you question the blood results itself, actually. Um, because it is incredibly low. And I think that's why it stuck with me is that a hemoglobin of 29 is probably the lowest, or one of the lowest that I've ever seen. And I think that is why it stayed with me. What else would you like to know?

SPEAKER_03 3:16

Well, I want to know who this man is and why he's sitting in front of me. What what why why are we talking? Um, has someone referred you in? What symptoms have you got? You are profoundly anemic, sir. Did you know that? Has someone said this to you before? Are you bleeding from anywhere, sir? Do you have an undiagnosed malignancy, sir, which is now revealing itself via via a blood test? What provoked you to get this blood test today? What does the rest of your FBC look like? Has your bone marrow failed? Are you pan cytopenic? What about your um your renal your uh function? What about all the other blood tests that we normally do? Those that's a very crowded paper, but that's what I'm sort of thinking about.

SPEAKER_01 3:54

There's a lot going on though, isn't there, with that hemoglobin? And you're right, you know, I did question that hemoglobin. Um, so I got somebody to repeat the hemoglobin, but I actually was seeing this gentleman um on the ward as a award review. Um I guess it wasn't necessarily a post-hate wardrobe because I wasn't a consultant at this point, but it would certainly be a senior review of a of a patient who'd been in hospital. And it actually been in hospital for three to four days. So, on further questioning, um, he was in bed, but I noticed still a wheelchair by the side of his bed. And he looked incredibly well. He didn't look particularly pale from the end of the bed. He was very large body habitus. I would, you know, his BMI, however accurate that is, was around 40 to 45. So quite significant. So, on further questioning, he said he had no symptoms at all. He felt well and he didn't know why he was in hospital. He'd actually come to hospital because a carer who looks after him daily had been to see him and said, I'm a bit worried about you, called an ambulance and brought him into hospital. But he really, really did not want to be in hospital. So when I asked questions regarding the low HV and potential causes similar to you, first of all, I was thinking, does he have any signs and symptoms of a low hemoglobin? And then I wanted to think about signs and symptoms of causes of a low hemoglobin, if that makes sense. So was he short of breath? Was he fatigued? Did he have any chest pain? Had he noticed any blood loss from it anywhere? And he denied every symptom. So then I thought, okay, could this be a malignancy? Have you lost any weight? Have your bowel habits changed? Have you noticed any easy bruising? Denied every single symptom. So I was thinking this hemoglobin's got to be wrong. This cannot be right. This has to be a spurious result. The repeat hemoglobin was 30.

SPEAKER_04 6:00

Okay.

SPEAKER_01 6:01

Which would suggest that um it was again completely normal. So sorry, completely abnormal. Not completely normal.

SPEAKER_03 6:11

Abnormal.

SPEAKER_01 6:12

Definitely not normal. Yeah, yeah.

SPEAKER_03 6:15

Okay. So let's um let's go back to basics. Um you've come in today because your carer was worried about you, presenting complaint. What was the con the carer's concern, please?

SPEAKER_01 6:29

Neglect.

SPEAKER_03 6:30

Self-neglect.

SPEAKER_01 6:31

Yes.

SPEAKER_03 6:32

Not looking after yourself. And do you agree with that, sir? Have you been let letting uh looking after yourself, or do you think you're struggling?

SPEAKER_01 6:39

Didn't think he was struggling at all. Didn't understand why people were bothered and was really annoyed. Was annoyed with me for asking questions, was annoyed with his carers for just generally harassing and faffing around him. And do you know what? He just wanted to go home and be at home in his own space, comfortable and happy. He didn't know what all the fuss was about.

SPEAKER_03 7:04

So I'm going to bring a little bit of past medical history into the history of presenting complaint, just because I need a bit of context. Why do you have carism? Why does he use a wheelchair? What's his health condition?

SPEAKER_01 7:15

So the reason for the wheelchair was unclear. And he said he had poor mobility and he'd always had poor mobility. He had bilateral leg ulcers. Both of them had compression dressings on, which I was very keen to have a look at to find out what was actually going on underneath these compression dressings. As I mentioned, he had obesity, so he was quite significantly large body habitus. He also had ulcerative colitis, and he'd had a prior pan-proctocolectomy, and he had a stroma in side chune. In the notes, it had been documented that he previously had a high alcohol intake and he was also a cannabis user, and he said that he continued to use cannabis.

SPEAKER_03 8:06

Do you see? So my assumption is that he has a care package, as we were saying, and he uses um a wheelchair because of maybe mobility issues secondary to his body habitus, and maybe due to painful leg ulceration, which makes legs his legs painful. Do you think that that was right?

SPEAKER_01 8:25

Yes. And I I guess I didn't make any assumptions, but my thought process was I couldn't really get to the bottom of what was really going on and the reason for the mobility aid, but the notes weren't very clear either. In fact, the notes were very sparse, which I felt was quite unusual for somebody who had quite a significant health condition.

SPEAKER_03 8:46

Okay. And he didn't volunteer any other past medical history of NATO.

SPEAKER_01 8:50

He said to me, he described himself as being autistic and having ADHD.

SPEAKER_03 9:00

Um and that and no other health conditions, correct? No, nothing else. And I often find that patients sometimes forget to mention quite a lot of health conditions in the past medical history and sometimes to flush it out. I mean we want to drug history. Let's say, do you take any regular medications? And sometimes that offers up a few more clues because they might mention a whole list of diabetic or antihypotensive medications or something they they forgot about. Anything on the drug history that were health informed?

SPEAKER_01 9:27

So he said that he took no medications whatsoever.

SPEAKER_03 9:32

Nothing to maintain remission for his UC or anything like that, no.

SPEAKER_01 9:35

He should take medication, but he decided not to.

SPEAKER_03 9:39

Oh, okay. Nil by choice.

SPEAKER_01 9:41

So it was nil by choice. So he was actually on no medication whatsoever. And on further delving into this, he hadn't accessed primary care for 18 months.

SPEAKER_03 9:53

Okay. You start to get a picture now about why a carer might be concerned about what they perceive as self-neglect. Someone who chooses not to take medications, which are really important, someone who chooses not to access healthcare or go maybe go to follow-up appointments, um, someone who cannot mobilize or walk um to the shops, for example, and maybe has to stay indoors a lot. So you're starting to get a bit more context. Um, all right then. So I've got a good sort of background, well, an okayish background of this chapter now, but we need to move forward and think about this blood result. So we have an FBC. Was the rest of the FBC normal? Was it just as hemoglobin?

SPEAKER_01 10:30

The MCV was 63.4.

SPEAKER_03 10:32

Microacitic, okay.

SPEAKER_01 10:34

Platelet count 321.

SPEAKER_03 10:37

That's normal.

SPEAKER_01 10:38

White cells, neutrophils normal.

SPEAKER_03 10:40

Okay. So it's just the um the HB that's down and it's microacitic. And the first thing thinking about is iron loss, uh, iron deficiency. And then that links me to chronic blood loss. And the UC. So he's had a pancolectomy. And could he have any kind of bleeding in the GI tract? Could he have had a chronic GI bleed, a low volume ooze over many, many, many months and managed to get his HP all the way down to 29? That would fit in with the low MCV. So one thing we need to put on our shopping list is um IN studies. Uh, we're doing hematonix, we should also do B12 and folate as well. Um, of course, B12 and folate deficiencies were causing an acrosytose for sometimes people can have multi uh deficiencies.

SPEAKER_02 11:32

Yeah.

SPEAKER_03 11:32

So we're gonna do um our hematonix. All right then. And any other abnormal blood results?

SPEAKER_02 11:39

Kidney function, normal, liver function, normal.

SPEAKER_03 11:45

And the urea on the news and e was normal.

SPEAKER_02 11:48

Was normal.

SPEAKER_03 11:49

About clues for a for a GI bleed. All right then.

SPEAKER_02 11:52

Okay, yeah, good thoughts.

SPEAKER_03 11:53

One thing's a bit backwards now, so we should examine the patient, I suppose.

SPEAKER_01 11:57

Okay.

SPEAKER_03 11:58

On examination, please.

SPEAKER_01 11:59

So this gentleman was in bed, he was very reluctant to be examined, incredibly reluctant to be examined. And I was really keen to try and get to the bottom of what was going on. Because of the low hemoglobin, and I felt the neglect, the self-neglect that was obvious to me from the notes and from looking at him that I really needed to properly examine this gentleman, but he really didn't want me to.

SPEAKER_03 12:28

And you couldn't you couldn't charm him, you couldn't persuade him because you're quite persuasive and likable.

SPEAKER_01 12:34

Am I so I did, I persuaded him. I didn't, I don't think I charmed him, but um after a little while, I said it would be incredibly helpful to examine you, fill your pulse, look at your hands, and I described what I was going to do in the actual examination. So it's very clear. And I said to him, if you want to stop at any point, I'm more than happy to stop. Please don't feel that you need to continue with the examination if you don't want to. So, on examination in the bed, he looked well, he didn't necessarily look incredibly pale. You know, a lot of them people don't want us to do that. But um, his heart rate was 79. Okay, saturations were 97% on room air, respirate of 19, temperature 36.9, blood pressure 111 over 50. Chest was clear. As I said, he had compression dressings on his legs, which were incredibly dirty, looked like they may not have been changed for a little while. So I did take them down because I was like, it's really important that I have a look at the actual legs. And I often find that a patient can sometimes be in hospital for a couple of days with compression dressing on, and there's a reluctance to take the compression dressings down because obviously they're compression dressings there for a reason. But you take them down, you're like, oh wow, there's a cellulitis, or there's an ulcer, or there's something going on that's been missed because people have been reluctant to take the dressings off. He had an ulcer on his right shin, which actually looked healthy. His left leg was absolutely fine and there was no pedal edema. Now I really wanted to examine his abdomen. Obviously, he's got a panproctorkolectomy, had a stoma in sight shoe, and I was very keen to have a look and feel the tummy. He really didn't want me to, and I get that, but after we gained a little bit of persuasion, I said, Can I just have a look? Let me just have a look at your tummy. And as I lifted his top up, there was a carrier bag full of feces attached to his stoma. There was no stoma bag, and I was like, Oh, I'd never seen this before. What's going on? And he was like, Oh, I don't use bags, I use carrier bags. I said, Okay, how often do you change it? And it was like, well, not not very often, if at all. And this bag was full. I mean, it was a a normal size carrier bag from a supermarket, and I could see I had a look in, there was blood within there, mixed in with the feces. It was the sight around the stoma and all the area was inflamed and looked incredibly mucky. And honestly, I felt so sad. And for this gentleman who I don't, for whatever reason, I'd got a carrier bag for a stoma that was full, and I had to walk out, and it wasn't the smell, I was really upset by it, and I don't know why this you know, sometimes some something happens and it upsets you. There's no rhyme or reason for one on one particular day, a particular time that something upsets you, but I was like, okay, and I just walked out, which was probably incredibly unprofessional. Um, I didn't know what to do. I left the poor resident doctor in there alone and shouldn't have done that either. But I walked out and I just had to take a minute to compose myself and go, What have I just seen? Yeah. Any any thoughts?

SPEAKER_03 16:46

Um, yeah. So this is someone who who has somehow slipped through the cracks of society and healthcare.

SPEAKER_00 16:54

Yeah, yeah, yeah.

SPEAKER_03 16:55

Someone's tried, they they put a care package in for him, and we probably sent him outpatient appointment requests, but maybe through his own choices. Um, you didn't mention he had learning difficulties as well. So, through his own decisions, he he has um deselected himself from ongoing care. Um, but sadly we we've somehow let that happen. And he's run out of the right equipment, he's run out of stoma bags, so he's making things work the best he can within his very limited resources. Um and it is it is sad, and it's something that we do face when we work in medicine. We we we see all sorts of people from all walks of life, and some of those stories are happy stories, and some of those are desperately sad stories. Um and we have to think about what we can do, not alone. This is not one person fixing this man's situation, but what is my role within the wider team now to try and change the trajectory of this man's life? Um so I would think first of all, medically, you said there was blood per stoma. This man probably has had a chronic GI bleed. Yeah, from a medical point of view, he's going to need endoscopies, he's going to need a per stoma endoscopy to to see what the bleeding source is. He's going to he probably need an OGD as well because you don't want to make assumptions and miss out GI bleed.

SPEAKER_04 18:22

Yeah.

SPEAKER_03 18:22

And he's going to need a gastroenterology review to see what medications, if any, he should be on to um to control his UC moving forward. Um, he needs transfusion. He needs um his probably iron stores um repleted with uh with infusions um and the and the hematenics that we mentioned earlier on. And he's going to need quite a lot of blood transfusion, which requires careful thought and monitoring of his fluid status because patients who have chronic blood loss are usually uvalemic. When you give them four units of blood, you can push them into um fluid overload, pulmonary edema, they're more likely to have transfusion and reactions like TRALI, transfusion, lung, acute lung injury. So he's going to need um blood products basically, but with careful monitoring of his fluid state alongside that. That's the medical side of things. Looking at the biopsychosocialist, he's going to need to consent to all of that.

SPEAKER_02 19:21

Yeah.

SPEAKER_03 19:21

Because patients, whilst they cannot demand or request treatments, they can refuse treatment. And I wonder if he might not take any of these treatments on board. There's also the issue of safeguarding. Um, I think this is a vulnerable adult who needs a safeguarding open and a proper social worker investigation. However, patients have to consent to a safeguarding if they have capacity. So to get any of that going, the first thing we need to do from the biopsychosocial side is assess his capacity. And I sense it's going to be tricky.

SPEAKER_00 19:58

Yes.

SPEAKER_03 19:58

Because uh capacity, as we know, is a four-stage process, and um many people can answer our capacity questions quite quickly, forcefully, and therefore tick all the boxes to have capacity, but still leave us as clinicians feeling a little bit uneasy because we we don't know if that's true or not. Capacity is grey, it's gray and granular. Um, but on paper it's black and white, and it doesn't quite match up. And it causes a lot of you know unease amongst doctors, including myself. I teach all this dark times. One thing I say is that capacity is really an opinion. It's your opinion about whether or not the patient is able to define treatment. If he doesn't have capacity, then you'd have to do a Declaration of Liberty safeguarding, keep him there under a dolls, um, make sure it's carefully documented, um, use the least restrictive option. I think if he uses a wheelchair doesn't mobilize, then hopefully he's not going to try and head for the door. Um, and you're going to open that safeguarding to try and do a really holistic assessment of his home situation and to try and get him uh back to where he needs to be. But if you do your four-stage capacity assessment and he seems to have capacity, what do we do?

unknown 21:13

Yeah.

SPEAKER_03 21:16

That would make everyone feel deeply unpleasant.

SPEAKER_01 21:20

That's is pretty much what happened. So after I collected myself and went back in, um there was sadness that's with that this situation had happened. But also I was angry, and I don't know what I was angry at. Was he angry with me, with him, with the situation? I'm not entirely sure. But I was I got an omission, and I I do this occasionally, and I'd stomp, stomp around the ward, make phone calls, you know, come on, this is unacceptable. Let's get this sorted. And the first thing that I did was spoke to the stoma nurses and I said, This is the situation, is there any chance we can have some help? Trying to clean the area up and speak to him about stroma care just to try and make things a little bit more comfortable for him. He was happy for me to do that.

SPEAKER_03 22:10

Good.

SPEAKER_01 22:11

No problem at all. So they were fantastic. They came down literally within 30 minutes. It was brilliant. And we were able to sort that out. He'd been in hospital for three to four days. This hadn't been picked up. I know.

SPEAKER_03 22:26

Carry a bag had been there for three days.

SPEAKER_01 22:29

Yeah.

SPEAKER_03 22:29

Well, I this is why you're angry, Amy.

SPEAKER_01 22:31

This is why I'm angry.

SPEAKER_03 22:33

But what did you do with that anger?

SPEAKER_01 22:36

Well, I ranted and raved a little bit, as I do, usually internally. But actually, he was very reluctant for me to examine him. Very, very reluctant. And I spent a huge amount of time with this gentleman, not persuading him, but trying to explain to him the reasons that I needed to. So I fully understand that in a very busy department, maybe in the emergency department or wherever it was when he was initially seen, that because of his reluctance to be examined and time pressures, I completely get why it wasn't picked up. On reflection, I can say that at the time I was like, what is going on? This is a disgrace. However, I managed to keep my emotions in check and realize that that anger needed to be converted into a positive emotion because I needed to get this gentleman sorted. One thing we haven't touched on yet, and I think actually maybe underpins quite a lot of what is going on here, is neurodiversity. We have a lot of patients who are neurodiverse. We may not know a lot about it. We may not know how to manage an individual who is neurodiverse within an acute medical setting properly. And also, there's a lot of bias there with diagnostic overshadowing. Do we hear autism ADHD and automatically? Does that introduce a bias in us? And we go, well, it must be related to that, or what they're not able to communicate properly. I don't know. Is this something that this gentleman and other people with neurodiversity experience as healthcare workers and as people who are trying to access health care? We really need to chat to his family and friends to really identify what is going on. This gentleman was in a very busy, crowded environment. Do we need to think about how we manage the sensory part of neurodiversity? Do we need to think about how we communicate? Do we have a neurodiversity liaison nurse within the trust, which some people do, to really help us care properly for this gentleman? And will that give us an understanding of why he's reluctant to access healthcare and why he doesn't want to take his medication? This gentleman was incredibly intelligent. The conversations we were having, not about medicine but about books and life and politics. This man was he knew a lot. He worked full-time. So he worked at home. It was working from home virtually. Something encoding computers. I can't remember exactly what it was.

SPEAKER_03 25:25

I'm sure that the neurodiversity did have a part to play in this. And I think it's also you're you're right with your bias. And I think again, it can make um capacity assessments quite tricky because the way that is is a perfectly reasonable way for me, let's say someone, uh let's say an autistic person, with the way they communicate, might um be perceived as so um atypical compared to uh how someone who does not have neurodivergence might perceive communication that then they go a bit awry with the capacity assessment and maybe think that they don't have capacity. I'm sure that bias absolutely exists. Um, and if you are neurotypical and you're doing um assessment such as a capacity assessment, which requires is based so strongly on vibes.

SPEAKER_00 26:10

Do you know what I mean? Yeah, it's it's um gut instinct, isn't it? Yeah, yeah, yeah. Yeah, yeah.

SPEAKER_03 26:16

Do you think they are appropriately weighing up the information and communicating uh back to you? You can see why someone might say, well, no, as a neurotypical person, to show that they're considering and weighing up and then communicating back to me at all. Um and there's that that is a bias there, absolutely. Um I think I mean you could almost I can almost understand why why a doctor missed the abdominal examination findings if they said, Well, he's getting very distraught when I try to examine his abdomen, so I didn't lift up the t-shirt or or I examined it through the t-shirt or something like that. I'm I'm still very surprised the nursing staff didn't pick it up with part of their routine sort of care and skin bundles and checks and hygiene checks. So I find that very, very strange.

SPEAKER_01 27:00

Which he'd refused, he'd refused to have them done. Because I checked into all of this, but uh, you're like me, I was like, I don't get it, just don't get it. Yeah.

SPEAKER_03 27:11

Um, I think I would be like you, I'd be on a mission, and I would go in and say, Yes, uh we've got a few things to sort out, haven't we? Yeah, do it with me, and I'm gonna make you feel a lot more comfortable, and we're gonna get you feeling a lot better than this. But this situation can't go on like this. Um, and maybe I'm a bit overbearing sometimes. I sort of go in with a blunderbus approach, and maybe I should sort of sit down and go, What would you like to happen? But I I just find that that is my approach, especially when I when I see a quite a complex case here. Yeah, no, somewhere where standards have fallen so below. I'm a fixer. I'm a fixer. So I'll go in and say, right, let's roll up as these people, let's make a shopping list. I always say shopping list on this podcast. I don't shopping list, right? Uh this lovely SHR. Right, what we're gonna do. Come on, team. Number one, cross match, number two, transfuse, number three, iron levels, number four, do this. Number five, you speak to gastro, number six, right? There we go. That's 10 things. That's enough for today. Um, we'll get you cleaned up and I'll see you again tomorrow. Um, and you know what? Uh I've maybe I could do a bit more breathing space in my consultation style to have people say, but what about this? And maybe I don't want this. But um that that's that is just how I do it. I know myself, and I think we are sort of quite similar in that stage. I would have to go away and think about how I'm gonna back to people, though. I think anger is a very reasonable response to this, but feeding back to other members of staff in the state of anger is just that is is is not the right way to do things.

SPEAKER_01 28:36

Absolutely not.

SPEAKER_03 28:38

You have to sit on it and bring your your sort of your cortisol level down a bit and then say, how am I gonna feed this back in a more useful way? I think most I'll speak for doctors because that's my experience in medical education. I think most doctors, if you say, Look, I saw this patient today, he's on day three of his admission, you saw him before me. He had a carrier bag full of blood feces, he's been there for three days. What do you think about that? I think most will show very good reflection. I think you know, no one's gonna go, oh, it's not my fault. They're gonna be they're gonna feel bad, they're gonna recognize a shortfall in their care and their approach, they'll reflect and think about what they can do differently next time. And I find often just feeding back in a factual way and asking, what's your reaction to that? Does a lot of the work, I don't need to go in and tell them off. No, they'll do that on their own. Um, if anything, I need to sort of pull them back sometimes and say, well, let's not chastise ourselves too much. You know, there's self-flagellation is not going to be the way forward for you to grow and develop and take something. Let's just think what will you do differently next time. Um, so I have to park the anger for a little bit.

SPEAKER_01 29:37

Yeah, and I think that's what I did, to be honest. And I think this case, it's not about the clinical side of things, actually. I mean, it is. He was anemic. You know, I need to give him some blood, as you said, and we need to think about why the anemia was there and do everything that you suggested. Absolutely. But the thing that resonated with me was how had this happened? How in whatever year it was, in our country with a healthcare that is free at the point of access, had this been allowed to happen? Was it a healthcare provider's fault? Or had he made an active decision not to access care? But was that made because of a lack of understanding as to why that healthcare was necessary? I don't know. As you can tell, it troubled me and it still troubles me, and I still don't really get it. And we all are aware of high-profile cases in which individuals who have neurodiversity have not been listened to, have not been managed appropriately, and have sadly lost their lives. Is this something that as doctors and working in healthcare we need to be more aware of? Yes, I think so. I think a lot of people in healthcare are neurodiverse themselves. And I think there is still a lack of understanding about actually really what that means and the impact of that. Now, I did do a little bit of reading around this, and there is actually a nice guideline. And the nice guideline is nice guideline CG142. So if you're listening in the United Kingdom, this is a guideline that we use as a standardized sort of guideline for the care that we provide. And this is actually about diagnosis and management of autism, but actually, there is a section in there that actually says what we should be doing in an acute hospital to manage individuals who have autism.

SPEAKER_04 31:44

Okay.

SPEAKER_01 31:44

So this isn't a mental health hospital, this is a physical health hospital. And the key things that they recommend are things like all staff working within healthcare should have an understanding of what it is. We should be able to provide care throughout the different stages of life of people with autism. So whether they're children, teenagers, in their 20s or older? We should provide information to individuals who are autistic in a way that they can read it, whether that be written down, whether that be oral, whether that be aural, whether it be different colour, different font. Do we need to provide a trained advocate who knows how to communicate and advocate for an individual neurodivergence? We need to think about sensory management. So, do we need to have individuals in lower litarias, quieter areas, which as you know in AE in emergency settings is very challenging. Do we need to be think about physical space? Do we need to think about lighting? You know, there are so many different things. Food, food dislikes, food likes, activity levels. You know, it goes on and on and on. And I don't think it's something yet that I feel that we have addressed and and can do properly. I'm not sure what your thoughts are.

SPEAKER_03 33:14

I think I think there are green shoots of hope, and I think things are improving compared to say 10 years ago when we would never absolutely.

SPEAKER_01 33:22

Yeah. No.

SPEAKER_03 33:24

And um, I know just thinking in my trust, we do offer training about neurodivergency staff, but it's not mandatory training. Um but um there is mandatory training.

SPEAKER_01 33:37

There is mandatory training. Yeah, absolutely. Yes.

SPEAKER_03 33:40

About three or four years ago, I think.

SPEAKER_01 33:41

Yeah, absolutely.

SPEAKER_03 33:43

Yeah, there is mandatory training now. I I don't, I'm not one who believes that something's made mandatory and hurrah, we fix the problem, we all know about it, because the uh knowledge attrition rates for mandatory training is quite strong, even if you repeat them every three years or so. But I think there is an effort and an awareness that there wasn't not before. But from the training I've been on and how it's been described to me, that very often autism is is like um people who are square pegs trying to fit into round holes, and we only ever make round holes in society, and we only ever will. Um, and it's about them saying maybe we could make square holes because I could fit into those quite nicely, and then we could all get along. We just need to make the effort to make a few of them, not not all of them, just a few of them square so we can find them, if you understand the metaphor a little bit. At the moment, we're we're trying to force people into situations which they simply can't make work for them. Yeah. And then the outcomes of that is can be poor or can be disengagement, such as in your chat's case, um, or we simply stop trying. This person clearly doesn't want to come to any follow up appointments, therefore good luck to him and goodbye. Um, and we're not thinking what could we do to make him more likely able to engage with us? Because we don't have the resources and the time and the budget to make those those those kind of square holes. Um, but I guess if we're having conversations about square holes, it's the start.

SPEAKER_01 35:04

Yeah, yeah, yeah. And I I think that's what the whole purpose of this episode is, is to it's to prompt discussion and debate because we haven't got it right. I didn't get it right. I think we've got a long way to go. And I'm sure some of the things I've said or terminology I've used and and that we've used may we may not have taught spoke about it in the correct way. Uh you know, there's so many grey areas, but I want to bring the conversation out there um for everybody at work to think about neurodiversity and how that might affect either a neurodiverse doctoral interactions or neurodiversity from a patient and relative perspective as well. I think that's incredibly important.

SPEAKER_03 35:42

Yeah, I agree with you. And and we're very open if we've got it wrong in this episode. Please do let's do that.

SPEAKER_04 35:48

Please do.

SPEAKER_03 35:49

We have no problem with that. If we've used the wrong terminology or we've used, or maybe our virus have been showing flavoring all the way through, but we're very, very open to to learn about those. Hopefully, people know that we're coming at it from a place of wanting to learn.

SPEAKER_01 36:01

Absolutely, and a place of wanting to help and make a difference.

SPEAKER_03 36:04

Yeah.

SPEAKER_01 36:05

Absolutely. I hope that was an interesting discussion thought process to go through, Ben.

SPEAKER_03 36:13

Yeah, it was.

SPEAKER_01 36:14

Bit different.

SPEAKER_03 36:15

Was.

SPEAKER_01 36:16

Yeah.

SPEAKER_03 36:17

They've got the brain working, which is why we do this job.

SPEAKER_01 36:20

Yeah. And um just I guess to close the story, um, he did have the treatment that he needed. He gave full consent to have the blood transfusions, the he had some vitamin B12 and folate as well. He was reviewed by the gastroenterology doctors who felt that his ulcerative colitis wasn't at that point in flair. So um he was just starting back on his normal medications for that. And reviewed by the tissue viability nurses regarding his legs, and a full package of care was put in place and he was sent home. However, that care package and uh broke down very rapidly, and he seems to be now on a revolving cycle where he comes back to hospital every two to three years with the same thing.

SPEAKER_03 37:07

So we haven't made it work for him yet.

SPEAKER_01 37:10

Not yet. I mean, the last I mean, this was a little while ago when I last checked, so maybe things have changed. So we try and do the best we can, don't we? With the resources that we have at that time, and sometimes it's still not enough. It is actually, oh gosh, okay, yeah. I didn't I didn't mean it to be like that, but yeah, exactly. And that's medicine, isn't it? You know, good days and bad days. Thank you, Ben, for going through that. Interesting case of me. I hope people listening go, oh, that was a bit weird, or it's not what they normally do. But I the learning points I think are so, so, so important. So, as ever, we love your feedback. Please rate, review, and subscribe to the podcast. And we are climbing up those medical charts. Last week we were the top medical education podcast in the UK, Ben.

SPEAKER_03 38:08

Do you know? I always thought if you were the number one medical education podcast in the UK, you'd be like rich, or you'd have a studio somewhere. You'd be like in a studio recording, not just sitting sitting in your you know, your spare bedroom, your kitchen with your headphones on like we do. You know, you have a picture in your head, Ben. I'm very happy to be number one.

SPEAKER_01 38:27

Sadly, there is no money in podcasting for us anyway. Um, and it's incredibly hot in my very tiny um office at the moment. Um, yeah, maybe one day, Ben, maybe Spotify will find us and want to produce us as a big international podcast. So, again, massive thank you to all of our listeners, and massive thank you to you too, Ben. Thanks for listening.