Paula McGowan OBE: Autism, System Failure & Oliver’s Legacy - Addiction and Care Reform

Paula McGowan OBE joins Believe in People for a full, in-depth conversation about her son Oliver, whose death led to the introduction of The Oliver McGowan Mandatory Training across health and social care in England. 

Paula explains how people are too often doubted, judged, or written off in services, how distress is misread as behaviour or non-compliance, and how bias, fear, and rigid systems can escalate harm. Drawing directly from Oliver’s story, this conversation challenges professionals to reflect on power, responsibility, and what must change in everyday practice to prevent avoidable harm and loss of life.

What Is The Oliver McGowan Mandatory Training?

The Oliver McGowan Mandatory Training was introduced following Oliver’s death to address systemic failures where autistic people and people with a learning disability were not listened to, misunderstood, or harmed through avoidable mistakes. The training is now a legal requirement for health and social care staff in England.

Information about the training and statutory expectations can be found here:

https://www.gov.uk/government/publications/oliver-mcgowan-code-of-practice/the-oliver-mcgowan-draft-code-of-practice-on-statutory-learning-disability-and-autism-training

Training availability and booking information can be found here:

https://www.olivermcgowantraining.com/book-training

If you found this episode of the Believe in People podcast valuable, please share it with colleagues and professionals who need to hear it. Subscribing, reviewing, and sharing helps this conversation reach the people who can make change happen.

WATCH THIS EPISODE ON YOUTUBE

#believeinpeople #believeinpeoplepodcast #believeinpeopleextra #PaulaMcGowan #OliverMcGowan

🎧  If this episode connected with you, please subscribe and review. It directly helps us reach more people affected by addiction, trauma and stigma. 

🔗 Then share this episode with someone who needs to hear it!

Browse the full archive at 👉 www.believeinpeoplepodcast.com 

Believe in People is a platform for lived experience, recovery insight and honest conversation. Whether you’re in recovery, supporting someone who is, or working on the frontline, this podcast exists to inform, challenge stigma and inspire change.

If you or someone you know needs support with drugs, alcohol, housing, domestic abuse, or mental and physical wellbeing, free and confidential help is available via Change Grow Live:

📩 Contact: robbie@believeinpeoplepodcast.com
🎵 Music: “Jonathan Tortoise” - Christopher Tait (Belle Ghoul / Electric Six)

Listen & Subscribe:
Spotify | Apple Podcasts

🎙️ Facilitator: Matthew Butler
🎛️ Producer: Robbie Lawson
🏢 Network: ReNew 

Transcript

Welcome And Why Belief Matters

SPEAKER_00 0:00

This is a Renew Original Recording. Hello and welcome to Believe in People, a two-time Radio Academy Award-nominated and British Podcast award-winning series about all things addiction, recovery, and stigma. My name is Matthew Butler, and I'm your host, or is Alex Sir, your facilitator. Today's episode is a difficult one, but an essential listener. I'm joined by Paula, the mother of Oliver McGowan, whose death exposed what can happen when lived experience is dismissed or overridden by professional assumptions. Oliver's story became a national turning point because it forces us to confront how systems respond to people who are seen as different, complex, or difficult. In drugical services, we work with people who are doubted, judged, and written off quickly. Many are living with trauma, and many may also be autistic, have ADHD or a learning disability. Are you noticed or not? In environments built around appointments, verbal communication and compliance, the risks can escalate fast. Paula speaks with clarity about bias, fear, power, and defensive practice, and about what reasonable adjustments actually look like in real moments of distress. But this conversation is not about blame, it's about learning, listening, and building systems that keep people safe. We begin today's conversation with a question that sits at the heart of drug and alcohol services. Why is believing people so fundamental to safety and dignity in treatment? Paula, thank you so much for joining me on Believing People.

SPEAKER_01 1:25

You are more than welcome.

SPEAKER_00 1:27

It's lovely to have you here. A lot of things I want to cover today because obviously such a tragic but interesting story that does need to be told. Oliver's story shows what can happen when lived experience from the person themselves and from their family is dismissed or overridden by professional assumptions. In drug and alcohol services, people are often doubted, judged or written off very quickly. Why is believing people so fundamental to safety and dignity in treatment and addiction treatment?

SPEAKER_01 2:04

I think it starts with bias. It starts with misunderstanding. It's about lack of education. It's about not always listening. And it's about not always accepting anybody that's different to ourselves. There's also a fear. So for me, it always comes back to education and knowledge. It's never acceptable, is it really? Especially in drug and alcohol abuse when people need help and support most.

SPEAKER_00 2:36

Can you tell me a little bit more about why it comes back to fear?

SPEAKER_01 2:38

Well, I think people are people are always scared of what they don't know. It's it's the unknown, isn't it? And people don't always want to face challenges that they don't understand or are feel unable to support. I think it's the fear of the unknown and fear of unpredicta predictability.

SPEAKER_02 2:59

Absolutely.

SPEAKER_01 3:00

Not many professionals want to put their hand up and say, I don't know.

Oliver’s Story And Power Dynamics

SPEAKER_00 3:05

Yes. That's interesting. Because I I guess looking back, how much of what happened do you think what was about lack of knowledge and how much of it was about power? I think what I mean by that is what when I mean I've I've I've naturally visited GPs myself. I work with doctors. I often find there's this, I call it the God complex. Do you know when you challenge the doctor, it's almost like they don't like to be wrong. And sometimes I almost get the impression that when they also know they are wrong, they don't want to admit it because they're the professional. They're the ones with that extensive amount of knowledge and experience. How much of it was about lack of knowledge and how much of it was about power?

SPEAKER_01 3:46

There was an awful lot about that actually in Oliver's case, and exactly why Oliver's death has become so high profile. Throughout Oliver's story, his voice and our voices were not heard, we were not listened to, and they were not seen as important. Red flags when Oliver was he was in crisis as in after he'd been intubated. We, as Oliver's parents, who knew him best, we could see things were going drastically wrong. We could see his life was in crisis. And when I say that, obviously he's intubated, and we could see he's looking very different. And we we highlighted this to the doctors over and over. We kept saying um things are going very wrong with Oliver. We're really worried. And they looked us squarely in the eye and told us, we will tell you when you need to be worried. His temperature was at 42 degrees and rising. And again, we you know, when I look back, I was running around with paper towels trying to bring that temperature down. He wasn't given any medication to control that temperature, but the doctors knew better. When we brought Oliver to hospital, and in that journey throughout that last year of his life, so it wasn't just the last hospital, it was the children's hospital before that. When he was in hospital, I truly believed that the medics, clinicians, nurses, doctors knew everything there was to know about a diagnosis of autism and a learning disability. I thought they knew more than me. In actual fact, that's my profession. I I work with children with additional needs, focusing on autism. And obviously, I'd lived with Oliver my whole life. And I honestly believed that they knew more. And not once did anybody put their hand up and say, I don't know. How can we help Oliver best? Not one person stopped to ask Oliver himself, who was very able to say, Oliver, how can we help you? Nobody was brave enough to say, and I will use that word brave, nobody was brave enough to say, I don't know. And that's wrong. First of all, it's wrong. It was wrong for patient safety. It was wrong for Oliver because it cost him his life. But it also for our medics, it's wrong for them. You know, we wouldn't ask anybody to go and repair a car or an engine if they've not had this, they haven't got the skills or they haven't had the trainer to do so. Why do we ask our medics, our clinicians, our health and social care practitioners to go out and support individuals if they've not had adequate training to do so? And I just felt that was so wrong and it needs to be addressed.

SPEAKER_00 6:28

I I've got a lot of admiration for you. When when I did Oliver's training, the thing that really struck me was right at the beginning, one of the first things you said that this isn't about blame, it's not about pointing fingers. As a as a parent myself, and and funnily enough, I just had this conversation with your with your husband in the reception area. I think I'd found it really hard not to want to point blame and and not really want to, I guess, feel I'm not saying you weren't angry, but I just think it's really admirable that you're you're in this place where in this training you do say it isn't about pointing fingers or blaming professionals. Can you talk to me a little bit more about that?

SPEAKER_01 7:07

I think generally that is the case. You know, you mentioned developer practitioners, so some doctors being godlike, and that was the case with Oliver. And you know, you I don't Oliver's training is absolutely not about blame. The individuals that were instrumental in Oliver's death, I compartmentalize. I don't think about those practitioners because that's not going to help anybody. However, 99.9% of practitioners want to do the right thing. They go into that profession. Well, I'd actually say 100% generally, go into that profession to do the right thing. So we are not going to get anywhere if we constantly go around blaming, pointing fingers. We want to bring about real change. And to bring about real change, we must work together collaboratively as a team. And we must keep, you know, in this instance, obviously all of us training is about autistic people, people with a learning disability, neurodivergent people. They must be at the very heart of everything. And we must learn directly from them. That is essential.

SPEAKER_00 8:17

Oliver's autistic behaviours were repeatedly misunderstood, even when clearly documented. In drug and alcohol services, many people are autistic or have a learning disability without a diagnosis and often have long histories of trauma and exclusion. What risks does that create in services that are built around appointments, verbal communications, and this general expectation of compliance?

SPEAKER_01 8:45

Huge risks, isn't it, really? Because obviously, again, it comes down to that ignorance from professionals, you know, the stigma from our neurodivergent individuals. You know, they are in crisis, as you've just said, addiction, they're seeking support and help. And the help just isn't there, is it? So a huge risk to our communities that are desperately in need of support. And it just isn't there because, of course, you know, traditionally, from my understanding, supporting people with addictions is usually talking therapies. You know, we were all familiar with Alcoholics Anominous.

SPEAKER_02 9:22

Yeah.

Bias, Fear, And The Cost Of Not Knowing

SPEAKER_01 9:22

That is awful for generally for a neurodivergent person. That is a that is a therapy that is never going to work and actually would cause far more anxiety. And the impact of that on a neurodivergent person is that they will, if they're addicted already, they're going to seek further addiction. So the risk of would we call them clinicians or therapists?

SPEAKER_00 9:45

Clinicians, therapists, yeah.

SPEAKER_01 9:47

Not understanding neurodivergent person, people, whether they're diagnosed or not, is very, very high. And this is exactly why we've always said every person, health and social care, working with the public, must all receive Oliver's training. And I've had, especially particularly from social care, practitioners coming forward and saying, Well, we only have old people in our practice, we only have wherever. And we say, Well, actually, you don't know whether your the next patient you have is going to be autistic or may have a learning disability. Or the older generations don't tend to have the diagnosis. Yes. It's been bypassed. You do not know. So this is we're trying to reduce that risk. I don't think we'll always be able to, you know, uh get rid of it altogether.

SPEAKER_00 10:36

It's funny you should say that with older people not having that diagnosis, because that's sometimes the rhetoric that you hear of we never had any of this autism back in my day. Like, you know, it was there, but as you as you said, you know, it was it was undiagnosed in in a lot of people. I suppose what I I guess how how do you get or maybe encourage, you know, care homes, people working with older people to to have that understanding as well.

SPEAKER_01 11:00

So at the start of this podcast, I talked about knowledge and education. And it comes back to that again, time after time after time. It comes back to educating people. It's difficult when people don't want to be educated. It's difficult when people don't always respect neurodivergent people. But this is a them thing rather than a those thing.

SPEAKER_02 11:27

Yeah.

SPEAKER_01 11:28

And it says an awful lot about those that don't want to be educated. It's awful, really, isn't it?

SPEAKER_00 11:34

Yeah. I I I think the interesting thing is families will notice those subtle changes long before you know people get to any any form of crisis point. What kind of sounds or warnings did you recognise that professionals dismissed it? And how can services learn to value that knowledge that you mentioned?

SPEAKER_01 11:55

I think in Oliver's case it was very different because he'd been brought to hospital having seizures. And of course, Oliver's training is all about reasonable, understanding reasonable adjustments. And reasonable adjustments were not made for Oliver in any way, shape, or form. Practitioners were not prepared to listen to Oliver himself, they were not prepared to listen to us, and they certainly were never going to make reasonable adjustments purely because they didn't understand the reasons why and what that could do to help Oliver and help themselves. So what they didn't see in Oliver, like I said, he he was having seizures, which made him scared and anxious. And instead of, like I said, listening first, but instead of backing away and altering their communication methods because, you know, practitioners would stand over him and they would speak in medical jargon. And that you could see the anxiety from the practitioners, and that impacted Oliver and heightened his anxiety even further. You know, they could have talked about, I think Liverpool was playing that night. Oliver was a massive Liverpool fan. The I think the X Factor was on. If they'd have just used humour, and we kept saying that, you know, talk about talk about what's on the TV tonight. That's what he's looking forward to. And it was just totally ignored. But if they'd have understood better and if they'd have used their ears and listened a bit more, that would have reduced Oliver's anxiety hugely. And that came out and it's Oliver had a learning disability mortality review investigations. It's known as leader, and that actually was one of the biggest points that came out. Reasonable adjustments. They should have been made when he was in the AE department that night. Instead, what they did was increase chemical restraint, ketamine, I think maybe, I think it was ketamine, but all of those drugs were increasing. Those types of drugs don't always work on the autistic brain either. And that can make rather than sedating an autistic person, it can actually heighten. And that's exactly what was happening to Oliver. So much so he needs to be intubated in the end. Um and the seizures were not stopping either. Because, of course, the more anxious he became, the more he was having seizures. So it was just awful, really, really awful.

SPEAKER_00 14:04

Do you think it you know when when you talk about not talking to him directly or asking him his needs, was that his age, or was that because of his autism?

SPEAKER_01 14:13

Absolutely, because of his autism, because of his additional needs. He was not seen as a person, and he was not seen as relevant. And we were treated very much the same way as Oliver, which was well, it cost Oliver his life. It really did. And then, of course, you know, I look back and the neurologist treating Oliver in the AE department that night, he was really good. He was fantastic. He he was he was trying, but what he was doing was wrong. Later on, what happened to Oliver whilst he was intubated was well, it cost Oliver his life. And again, it came back to that situation of people not listening, absolutely people not listening, listening to even, you know, Oliver may have not been able to speak for himself, but we were able to advocate for Oliver. But again, that stigma, that bias, yeah, it was there the whole time. And that's where I hear from autistic people all the time. And people with ADHD, you know, they they they are treated so badly.

SPEAKER_00 15:13

No, I can I can definitely relate to that based on the work that we do. I think it's quite interesting work on people with uh substance misuse problems, especially their interactions with medical professionals, people who are genuinely in pain that can't get prescription pain relief because the doctor just assumes that they're trying to score more drugs basically to misuse. There is that stigma there that that comes with them as well. So that's something that I see very often and definitely something I can relate to. I guess the the part that I've picked up there is misinterpreting that distress, and I suppose in Oliver's case, distress and neurological symptoms were repeatedly misread as behavioural or psychiatric, leading to, again, as you said, inappropriate medication, which had devastating consequences. In drug and alcohol services, where prescribing uh detox and crisis response is our routine. What happens when distress linked to autism and learning disability is misinterpreted as substance use challenging behaviour or non-compliance?

Misread Distress And Wrong Medication

SPEAKER_01 16:18

It's just totally unacceptable because the one person who asks for help and support, they're the one, they're the ones who are abused by the very people, in a way, so I will use that language abused, by the very people who are there to help the most. Now, again, we don't point fingers at people, at professionals, because we need to bring them on that journey of better understanding to enable them to better support our neurodivergent communities. But again, it comes back to that not understanding autistic behaviours, the meltdowns, the stimming, the communication, the withdrawal. And by that I don't mean withdrawal of um drugs. I mean the withdrawal where an autistic person or a neurodivergent person might be overwhelmed. They're in sensory crisis. And of course, when a person is in sensory crisis or sensory overload, their behavior becomes heightened. That's not behavior. I see that as communication. A person is actually trying to communicate a need, and a professional has a duty, they do have a duty to understand that need. And chemical and physical restraint is not the answer. But listening, talking, and understanding, you know, all of us training is all about ask, listen, do, and learning directly from the person. That's where we will get the answers. That's where we will be able to support better. And at the end of the day, that's why professionals are in this job at the very start. But you've we've got to learn to listen to our neurodivergent communities far, far better.

SPEAKER_00 17:53

I think this was something that I found really interesting within the training, thinking about our client base and who we work with. The amount of times that I've seen the people who are accessing our services labelled as chaotic, when my opinion, after doing that training, is how many of those are, in quotations, chaotic, and how many of them are feeling overstimulated by the environment? Our reception area specifically, it can be so overwhelming. I feel overwhelmed as a staff member in there, let alone someone in there who's trying to access service support. I just found that really interesting about the in in the way that we communicate with these people and and how how are we getting this so wrong in the terms of this blanket response to everybody having the same service as they come in when all those needs, as we said beforehand, we in our service in Hull Alone, there's over 3,000 people that are accessing that service. The differences in those, how many of them are undiagnosed as well? Do you know what I mean?

SPEAKER_01 18:46

Well, well, exactly. You know, and people are laid first of all, the labels because they've got an addiction. Yes. So we've got the bias going on there. Couple throw in that somebody is laid labelled as autistic, labelled as having ADHD, maybe OCD, but it's exactly what you've just said, that environment which is not adapted. It's reasonable adjustments. Yes. It's not adapted to meet the need. And people just need to step back and ask, listen, and do. It's not hard. It's really not hard. Is it so hard to ask a person when they come into that reception area, how are you feeling right now? What can I do to help you? What what things can we do to make things a bit easier for you to access our service? Is that really a hard thing to do? But instead, the fingers are the fingers are often pointed at them. They're labelled as, as you said, chaotic, difficult. They won't engage. When in actual fact it's the it's the professionals who are not engaging because they're not stepping into that person's life, into that person's head to see exactly what's going on and what we can do better.

SPEAKER_00 19:55

It's the one thing that I've always found interesting when people are, as an example. Kicking off in the reception area. And the example that I give when I'm delivering training around conflicts resolution, we'll say for lack of a better word, is if someone's coming in and they're upset that their methadone prescription isn't in the chemist, that's come from a place of it's almost like the brain's now just gone into overdrive and it's like, oh, my prescription wasn't at the chemist. That means I'm not going to get my methadone. That means I'm going to have to score drugs. They go to the service, you know, they explain that it's not there. And then they sat in the reception. Then whilst they sat there in the reception, they're thinking, I'm going to have to steal, I'm going to have to, you know, go on the rob, I'm going to have to borrow money. I can't afford to borrow money. I'm going to have to borrow drugs off someone. But then that person, and it's just on and on and on. And then you often find that once you you sort of find the situation as right, the prescriptions here, there's a reason why it won't send to the chemistry, you address that. There's almost like this deflation of relief. But the the hard part there is when they're just left to just sit in the reception whilst all this is going on their head, which naturally that's where they're going to get agitated. That's where the, again in quotations, the chaotic behaviour is going to come from.

SPEAKER_01 21:03

Well, they don't feel listened to. And this is why it was essential that receptionists do receive Oliver's training tier two. You know, they've got to, you know, people do need to understand that this is communication. This is actually a very frightened person that sat in that waiting room. The waiting room itself is unpredictable. It's unpredictable. The unpredictability to the neurodivergent brain is really, really hard to deal with anyway. Their anxiety is going to be through the roof. When if that had been addressed at the start of when that patient, that person walks into that room, things could be very, very different. I don't know the answers, but I'll tell you who does, I'll tell you who does know the answer. The person who is having a withdrawal from the, or you know, that's needing the methadone. Just when they're in a better place, ask them what could we as an organization have done better? What could we have done to help you best when you're in that situation? The answer is there.

SPEAKER_00 22:04

So previously, I mean I've I've worked in the service for 10 years. Previously, I've seen it's almost straight to punitive measures of that person's banned, they can't come here anymore. And it's like, oh, that's not the way to go about this situation. But it's not, is it?

SPEAKER_01 22:16

Because why is the service there in the first place? Exactly. If you're going to push people away that need it most, you know, people who are accessing that service, they all need it. But the neurodivergent person, the autistic person, the person with um ADHD and all the other diversities that need it most. And if we're pushing them away, where is that going to lead? Obviously, the mental health is going to increase the desperation that leads on to impatient care. You know, you think about the money that that will involve, that then leads into physical restraint, it leads on to chemical restraint. You know, the impact of what we do as professionals is significant to those communities. And it's all because we get it wrong. We get it wrong. And it that's our lack of communication and understanding.

SPEAKER_00 23:07

In in highly risk-averse services, do you know I think decisions can be driven by that managing organizational risk rather than individual safety. I suppose how did that defensive practice play out in Oliver's case?

SPEAKER_01 23:20

Well, obviously, it cost Oliver's life, didn't it? It's a difficult one to answer, really, because if I think about it, that defensiveness, we were just ignored. They didn't have to get too defensive because they were just, I can still see to this day two consultants. One was the neurologist, a neurologist, not the one I mentioned earlier on. And another one was the intensive care doctor. And we both pointed out Oliver's eyes were looking really puffy. He was looking blue around his eyes. And I can still see them to this day. They didn't even acknowledge that we'd spoken, that I can still see them. It was like a pair of curtains. They'd turn their backs on us. And at that point, if they'd have listened, we now know that's when Oliver's brain was swelling. And what your listeners might know is that Oliver's brain, as a risk, as a result of that drug that was given, it swelled so much it was bulging out the base of a skull. Now, that was obviously the temperature was rising. That obviously that was one of the things that were causing it. If they'd listened at that very point, that could have been prevented. Something could have been done, and Oliver's life could have been saved. So again, it was this arrogance, isn't it? Really?

SPEAKER_00 24:30

Yeah, I think the part that I found, well, the entire story is heartbreaking. But you talk in the in the training about how his eyes were were rolled into the back of his head for almost half an hour. And it was almost like they they thought he was making it up.

SPEAKER_01 24:43

Oh, do you know that that was back in the children's hospital?

SPEAKER_00 24:46

Well that was awful.

Reasonable Adjustments In Real Life

SPEAKER_01 24:48

When I you know it that's called oculogy crisis, and we didn't know what it was, and neither did poor Oliver, you know, he kept apologizing. It was horrible. And hopefully, in this podcast, you can show that photograph. Um, it's quite a traumatic photograph. So he'd been given a drug, which I won't mention the names of these medications, and it was an antipsychotic drug. And they'd obviously given him too much. He didn't need it, he was just a kid, and he he was he was actually in the hospital and he was bouncing his ball. He was he was massive. Um you played for England development squads, and they'd given him this medication, and it's called ocular gyro crisis, and it's a dystonic reaction, and it's very painful, and your face becomes frozen, and your eyes, like I said, have rolled up at the back of your head. It's horrible. And you need a medication that can counteract that reaction. But I heard the neurologist, she was there, and she said, She'd never met Oliver before, he's making her up, it's behavioural, you know, like um in Oliver's story. Do you know he was a good two shoes, he'd never had his attention, he was known for his manners, he was just everybody's friend. So it was really, it was awful to hear him being labelled in that way. And it was only, like I said, after six hours when she realised, six hours they left him.

SPEAKER_00 26:01

Six hours. Oh wow.

SPEAKER_01 26:02

Six hours when she realized he'd not changed from that position of that frozen face. Precyclogine was the medication. And you know, it took 15 seconds. That's that was quite and that is discrimination. He would not have been treated in that way. And you know, I I do an awful lot of presentations, and um, I often say, you know, if Oliver had not had a label attached to him, him being autistic and having he had a mild learner disability, if I'd have gone into that hospital, I definitely would not have been left for 20 minutes like that. Nobody else would have done. But because he had labels attached to him, this is why this happened to Oliver, and this is happening actually to a lot of um autistic people who are sectioned, who are hospitalized in uh hospitals, care homes across the country. And that that is a reality, um, and that's wrong. That is wrong. Again, that's um stigma, isn't it? And it's bias.

SPEAKER_00 26:57

I I guess going back to the labels that we talked about, like chaotic, Oliver was described by the professionals as as challenging, or that it was behaviour at points where his needs were not being understood or met. In addiction services, people are often again labelled as chaotic or difficult. I guess how does Oliver's training help practitioners pause, question those labels, begin to understand what really might be going on for that individual?

SPEAKER_01 27:28

Well, Oliver's training first and foremost has been designed by autistic people and people with a learning disability. So it's all about learning directly from them. And you know, that's what it's all about. It's about asking, listening, doing, it's about understanding the laws, it's understanding communication needs, it's understanding reasonable adjustments. And it's for our practitioners, you know, the value behind that is that our practitioners will learn to understand directly from our neurodivergent communities. That is essential. You know, I often say it's a bit crude, you know, there's nothing worse when a man doesn't understand a woman's private needs, vice versa. So why would we want to learn something if it's not coming directly from that person? It doesn't make sense to me. We have to, you know, we we've we've got to step away from the the medical side of things and learn, you know, separate it and look at the social and learn directly from these communities. That's what it's all about. We need to stop labeling. By that I mean behavior, challenging behavior, chaotic nuisance. There's there's a there's a lot worse than that.

SPEAKER_00 28:44

There's all the I've we hear them all the time in in services as well.

SPEAKER_01 28:48

I think we need to humanize our neurodivergent communities. We have we need to start to see them as people and as equals. You know, I often think actually, is neurodivergent becoming are we more neurotypical? You know, I think there's there's a lot more people that are autistic than we realise. And as you said, undiagnosed. I think it's time to just stop and think and consider and be curious and ask questions.

SPEAKER_00 29:14

One one of the things I I loved about the trainer, it was a co-produced piece. It was it's it's a relatively small thing, but those that were talking was was labelled as experts by lived experience. And I loved that. I've I and we in in addiction services like ours, I've I've often used the words like um, you know, just those with lived experience or recovery champions or peer mentors. But when I saw experts by lived experience, I was like, that's incredible because you just said nobody understands that more than that person who is living it.

SPEAKER_01 29:48

Of course, you know, I th I think it's um I think it's awful that you know the the literature out there about autism, how it's diagnosed, and so on and so on, that's been derived from non-autistic people, people who don't have ADHD. People write, and we all learn from people who are not always autistic themselves, who don't have that need. And I I just actually can't get my head around that. I think that's awful. It really is. You know, I'm not being funny, I don't know anything about you. First time I've met you. Can you imagine me writing up writing up a paper all about you? But I don't know you.

SPEAKER_00 30:28

See, there's a little sad note. So I'm bald now, but I used to have bright ginger hair. And I I was quite happy to be known as the ginger head kid. And it was funny when someone said, Oh, you're not allowed to say ginger now, you have to say strawberry blonde. I was like, no, I'm ginger, I prefer ginger, but it's often that is the case, and it's people speaking on behalf of other people for other people, and you just can't get your head around that. But the experts by lived experience, I was like, that really just really brings that together.

SPEAKER_01 30:55

It's important, it's really important. We need to hear how best to help and support these communities by hearing directly from them. Again, comes back to ask, listen, do, and respect, humanize.

SPEAKER_00 31:07

Reasonable adjustments is is an interesting one for me because I think services often say they make reasonable adjustments, but sometimes I still feel like those adjustments still expect autistic people to fit existing systems. What does a genuinely reasonable adjustment look like in a moment of distress for somebody?

SPEAKER_01 31:29

I think if the distress are are you first of all, are you able to ask how best can I help? Anyone that's in distress, I I I feel the more you talk at a person, the worse it gets. You're going to heighten that anxiety. Step away. If necessary, dim the lights. We can all dim the lights, but don't talk at the person, move things away, just step away, give them space and time, and and just let that person calm.

SPEAKER_02 32:00

Yeah.

SPEAKER_01 32:01

And that's what I would do. But hopefully, people would have a health passport. They they are invaluable. They give information on when a person is in a karma space with, where you know, it will mention their health needs and how best to help them generally and also in times of crisis, they are invaluable. But a reasonable adjustment is only reasonable and what and what is available at that time. So, you know, if you go into, especially if you go into our AE departments right now, there isn't always a quiet room. There just isn't, and and you can't always demand that. But what is available is how we communicate empathy, time, space. You can't always dim that light, you know, and it's getting down onto that person's level. It's what you can do, and it can always be the most basic of things, things that you haven't even thought of. But if you can, or actually, what you should always do every single time is ask the person, their carers and families. Anyone that's there to advocate for that person.

SPEAKER_00 33:04

Thank you. Listening is is obviously you know hugely important. And for all of us care, you and your you know, family raised repeated concerns, provided clear evidence, and we're not listened to. Going back to us and substance misuse services, where risk can escalate quickly. How important is it that practitioners genuinely listen to family and carers when accessing safety, medication, and those discharge decisions as well?

Stigma In Waiting Rooms And Reception

SPEAKER_01 33:32

Well, it's essential, isn't it? Because it can save a life and it can take a life if the person the person themselves, their families and carers are not listened to. You know, that is the ultimate thing at the end of the day. If we're not listening, and you know, we've got to think about what is listening, because it's got to be effective listening. There's no point listening if you're not going to do anything about it. There's no point providing information or asking a person, what can I do to help you? Because more often than not, people don't know what's available to them. So make sure that you always know what you can do best to help and serve. But I just think this basic dehumanization, this lack of communication skills, this lack of, lack of, lack of education has such an impact on the person, the very person that you're trying to help. But instead, we we do get it wrong and we do stigmatize. And that arrogance and that ignorance is costing lives. And when I say costing lives, that can actually be not necessarily death, but it's the quality of life that we're taking away and the impact and you know what results from the lack of us and how that results in that person going forward. You know, homelessness, like I said, institutionalization.

SPEAKER_00 34:51

Both very prevalent things in in the work that we do as well. Well, that's what I'm saying.

SPEAKER_01 34:54

That's what I'm referring to, actually. You know, but professionals, if if they don't understand the neurodivergent brain, they can't get to the root cause of why a person has reached for substance abuse. You know, if you don't understand why that person has done it in the first place, how can you help them best? If you don't understand stimming, sensory overload, sensory crisis, if you don't understand why an autistic person seeks to be included, how difficult that is for them, how can you help them best if you don't even understand the basics or you haven't even thought to ask the person? You know, because there's so much going on before we even get to the drug abuse or the um alcohol abuse or wherever, you've got to understand the root cause first.

SPEAKER_00 35:42

There's practitioners up and on the country that will be listening to this as part of their learning and development. If you could say one thing directly to them, what would that be?

SPEAKER_01 35:53

See the person. See the person, think, ask, listen, and do every single time. Ask what you can do to help best. But please always remember, and I would say this directly, and I'll look right in the camera, it's not about blaming, it's about all of us working collaboratively, working together to get it right. Because we've got to get it right, and we've got to stop thinking about backfill and costs. You know, money is important, of course it's important, but actually saving lives and giving a better quality of lives, life to people is far, far greater. Far greater.

SPEAKER_00 36:30

For for you specifically, I believe you were often placed in this position of having to explain Oliver to professionals with with again, it goes back to that more formal authority. What does that emotional labour do to families over time?

SPEAKER_01 36:46

That's hard.

SPEAKER_00 36:46

Yeah.

SPEAKER_01 36:47

I think that's a there's a lot of things I've learned since Oliver died. I wasn't perfect either. You know, I would often talk about Oliver to professionals rather than allowing Oliver to speak for himself. And I would do that over and over. Actually, doing these presentations, um, which I do a lot, conferences, NHS trusts, social care trusts, obviously, I'm talking about Oliver now. When I talk about what happened over and over, I'm I'm able to compartmentalize. But actually, it's I I thought it probably is very hard when you think about it. But families, for me, I think every single time if the if if an autistic person, ADHD, a neurodivergent person, we've got to enable them to be able to speak for themselves. You know, obviously there will be people who are who aren't able to speak for themselves, who are more profoundly disabled. That's a different situation. But where possible, and that it would be quite a lot of the time, we've got to enable those communities, their voices have got to be heard in one way or another. You know, um, we have people who are, as I've just said, unable to talk, but there's other ways of communication, and we've got to learn how best to help them. There's lots of different ways to communicate.

SPEAKER_00 38:06

Thank you. I I think most of the professionals involved in Oliver's care may believe that they were acting in his best interest, yet the system obviously failed him. In drug and alcohol services like ours, staff often see themselves as compassionate and well-intentioned. Why isn't empathy alone enough to keep people with learning disabilities or autism safe?

SPEAKER_01 38:31

Well, empathy is just one part of it. Empathy alone is not going to keep somebody safe, is it? Because we're not addressing the the core reason as to why our communities need to reach for substance abuse. So it's not just about empathy, it's about humanization of people seeing the person. It's about giving the right support. Empathy should be there all the time. We shouldn't even have to mention that, should we, really?

SPEAKER_00 38:57

It should be the default, the natural.

SPEAKER_01 38:59

But I think I think our professionals, we need to step back and say, look, if this person is continuing to have substance abuse, if they're continuing on the path that they're on, we have to question what we are doing as professionals? Where are we failing this person? And I think it's self-reflection is essential. And if we can't do that, then actually I would question: should you be in that profession? If you can't see a person as a human being, should you be in that profession? If you can't question and be curious about how a person thinks and behaves differently, then you should not be in that profession. We've, you know, like I said, you've got to open that mind and you've got to be thinking differently in order to help that person best.

SPEAKER_00 39:45

Absolutely, yeah. Long before the the worst outcome, what harm is done when people aren't believed to trust engagement and even that willingness to seek help?

Labels Versus Communication

SPEAKER_01 39:58

Well, they've they'll turn away. Won't they? And of course, whatever crisis or abuse that they've turned to is going to worsen, isn't it? And ultimately the quality of life is greatly affected, without a doubt. And then ultimately it costs lives. But it's not just that person, of course, because of it's far reaching, isn't it? The family are impacted. Um, carers, the family dynamics are just absolutely destroyed, aren't they? Sometimes when, as you as you know from your profession, where drug abuse or alcohol abuse or even gambling, where that comes into play, which can be, I'm hearing, can be quite profalent amongst the neurodivergent communities. You know, isn't it awful? Isn't it terrible that people are desperately trying to live a happy life? And that happy life doesn't exist because society constantly puts pressures on our communities and they're trying to perform and conform, conform, sorry, to what they perceive as normal. And that is just that is the impact of not getting the right support at the time of need.

SPEAKER_00 41:11

I think it's interesting you say that as well, because one of the sayings that I heard very early on in in my career in substance misuse services was nobody goes into addiction alone. And I used to think, well, of course they do, you know, if they're doing that harm to themselves, but you quickly realise, no, it's the impact that that has on the families. You know, if someone's there with a heroin dependency, the the impact that has on their partner, their mother, the father, their children, it's so widespread. It isn't just down to the individual. So it with that in mind, I guess if if people aren't believed, you know, when they do have the problems that they're having, as you said, they just turn away. And that will only get worse and worse and worse.

SPEAKER_01 41:46

So can I ask you a question? How many neurodivergent people do you think access your service?

SPEAKER_00 41:54

I do know from the top of my head, I I I couldn't even tell you because I don't think it's something that we even ask at the point of assessment if they even believe they may have neurodivergent, neurodivergency.

SPEAKER_01 42:05

Why don't you ask that question, if you don't mind me asking?

SPEAKER_00 42:07

No, well, there you are. If if we if we could, I think that's the one thing I'd like to see based on the based on the training, and based on Oliver's training, it it's it's not just about how we interact with with people in terms of them attending and coming into the reception area or if they're presenting again in quotations chaotically. It needs to go deeper into to every single point of the system. And we should be referring to people to try and get that specialist support if they do believe it as well. Because I think the the one thing that's interesting around us talking more about neurodivergence, I think more people are starting to possibly recognise those neurodivergence traits in themselves. So at that point of assessment, they might actually be willing to say, actually, now you've asked me. I've never been asked that question before, but now you've asked me, possibly. And then how do we follow up with that in the way that we support people?

SPEAKER_01 42:55

That comes back to the start of our conversation. The reason I would say that you probably don't ask is fear. You don't you feel that you might upset the person, you don't want to cross that line. I have a suspicion that that might be the case, and it comes all always comes straight back to ask, listen, do, doesn't it?

SPEAKER_00 43:15

It's funny you should say that because I remember being on like this this panel thing, and there was doing something around uh ADHD. And I said, Oh Matt, we we've put put you forward for it because you're neurodivergent. And I went, Am I?

SPEAKER_01 43:27

I did wonder if I'm honest.

SPEAKER_00 43:29

There's like, I could have I could have sworn you was ADHD. I was like, I and I've I've never looked into it. I know there are things that I probably do that are quite in line with with ADHD, but yeah, I've I've never gone and sought help for it or anything, do you know? But I think I see that in I I sometimes I feel like it has a bit of a strain on my relationship. My wife's quite a tardy person, and she'll get quite frustrated when I've just started one job and then I went downstairs to the tool cupboard to get another one, and now I've just reorganized my entire tool cupboard and the job I started upstairs still hasn't been done. The way I jump from things from topic to topic, I start another story when I'm halfway through one story. There's all these little things that I do. And I I think maybe the reason why I if if the if it is there, why I haven't sought help is because I've never felt like it's had too much of a negative impact on my life. But it was interesting when I did get asked, are you neurodivergent? I was a little bit like, I don't know.

SPEAKER_01 44:22

Am I? Honestly, I'm asked the same question. And I I've I have a few suspicions about myself, but I don't feel the need either to get the diagnosis because I'm supported within my, you know, I I can see in myself I divert from one thing to the next. I'm having your question, you're asking me questions. My brain is also it's jumped elsewhere already. Yeah, is that ADHD? I I don't know, but I am aware that I do it all the time. I can't watch a film without predicting the end, and I do predict it correctly every single time. My husband refuses to watch a film with me.

SPEAKER_00 44:57

Yeah, I'm the exact same. Yeah. Because my wife will be asking what happens next. I was like, we've never seen this before. But she's she asked me because nine times out of ten I can normally suss out what's happening before it happens. I can do it really quickly.

SPEAKER_01 45:10

Um do you know if if if I am, if I have ADHD or if I am possibly autistic, something I would embrace. But then that's because I'm very fortunate to have. I mean, I don't know. I don't know. I'm just saying I I have a really good family around me, and it's not impacted me to the point of the people that access your service or the people, people who've been stigmatized, who's been who have been treated absolutely awfully. You know, and yeah, that that type of thing. I mean, where we're we're smiling up, we were laughing about it, but we're okay.

SPEAKER_00 45:44

Yeah, I think one of the things, and this is it it shouldn't be the case, but I think maybe one of the reasons why I haven't as well is because I sometimes see it's almost like negative comments where oh, everyone has ADHD or autism nowadays. And it's like, well, I don't I don't want to be that person who's just saying I have it for the sake of following it. Do you know?

SPEAKER_01 46:00

I'd rather just kind of keep it looking about change things now. I usually say, Do they? What makes you think that?

SPEAKER_00 46:08

Yeah.

SPEAKER_01 46:09

And put it back on them. Yeah. And again, it highlights their ignorance. And actually, do you know, people don't always mean to be ignorant? People want to be educated a bit more, and people read things on social media, and of course, we know social media is not always correct, is it?

SPEAKER_00 46:24

It's presented as factual, that's the problem, though, isn't it? Sometimes, yeah.

SPEAKER_01 46:27

Yeah, I know, I know. But it's again, we come back to education. But I was going to say to you, what does the medical model look like for your service? You know, when when when you've got people coming into your service and they need help, support and treatment. Is it set? And is it the same for everyone?

SPEAKER_00 46:46

It it feels it feels set. I think that's that's part of the problem with with a service like ours, is it's often uh you often hear the word the the pathways. The pathways, the pathways, the pathways.

SPEAKER_01 46:57

What's the pathway for?

SPEAKER_00 46:58

Well, that's that's the thing. It feels like it's almost here's our model, here's what what we we give, and we're commissioned to deliver that model. So in this sense, it's medically assisted treatment, which is a a method on programme, which is obviously there to help with the withdrawal symptoms, and and as the as they're prescribed, we we address the underlining or the other issues that could be there surrounding it. But it feels like it's this is the model, and you kind of have to to fit to it, and it's quite hard to deviate away from.

SPEAKER_01 47:30

A bit like a jigsaw puzzle, and everybody has to fit in.

SPEAKER_00 47:32

That's it.

SPEAKER_01 47:33

So again, I'm gonna ask for a little bit of d data that you might not know. What's the success rate of this fixed medical model?

SPEAKER_00 47:41

Wouldn't be able to tell you off the top of my head.

SPEAKER_01 47:43

Ish.

Defensive Practice And Systemic Harm

SPEAKER_00 47:44

I I wouldn't even be able to give a ballpark figure because I think that do you know what I will say? There's an there's an interesting fact for me that when I when I look at the outcomes between substance misuse problems directed to opiates, for instance, and those that are struggling with alcohol, the alcohol pathway, again, the use of the word pathways, that seems to have a point of entry and a point of exit, and and that seems to flow quite nicely with people coming in the start and then leaving at the end. The and I can almost pinpoint that as a as a straight line. The interesting one about the one for opius, the medically assisted treatment model, is you're coming at map one, you have the assessment, we basically get you onto what we'd call maybe like an optimum dose of methadontas to stop the withdrawal symptoms. And then we can either go to medically assistant treatment stage two, where we will address any surrounding issues, or if they're quite stable, it might go to a map three, whereas there's the reduction, map four, which is the detox. I'm not a frontline recovery practitioner, so bear with me on that one. But it's kind of like it it's it's across, it's up, it's down, it's backwards a bit, it's forwards again. And it's kind of almost like if you do rather than this straight line, which seems to work with the alcohol pathway, it goes in like spirals and it's back and forth and back and forth. And it just it obviously it it there is a success rate there. But I think when I when I look at people as individuals, I can see why people are struggling with it and why it's not working for certain people. And you may develop a really good rapport with your key worker in mat two, and you've addressed your stability, but now we're going to do a reduction, so you move on to a mat three keyworker. But hang on, I built up a really good relationship with my mat two worker. Now I have to go meet somebody else. And I understand how that can be so difficult for people as well.

SPEAKER_01 49:28

Well, I would question the biggest failings, the the commute the group that fails the most on that treatment pathway. Would that possibly be our diagnosed and undiagnosed neurodivergent people? And that comes second-handed where I will also say, is that because the plan is not diff differentiated to meet their needs? So it's a two-part question.

SPEAKER_00 49:51

It's interesting because I'm actually part of the I've I've just joined a like a medically assistant treatment working group basically. And I'm there representing sort of especially the the lived experience voice managing those lived experience working with volunteers. I deal with a lot of the service user feedback. And it's interesting that neurodivergence hasn't really come up in that working group yet. And I do think that's definitely the thing that we're going to be taking from.

SPEAKER_01 50:13

Nobody's curious. Nobody's asking. That's it. So again, we we come back to that. Why are people not asking that? Are we are we afraid or ashamed to ask that question? And I have to say, then we must be. Because why aren't we? Because our neurodivergent communities need those adaptations, they need those reasonable adjustments. You know, they're not cushions that have just come in and sat down. They actually need specialized and differentiated help and support. And that's where our practitioners can do so much more. You know, it's not just about Oliver's training, it's about so much more. And again, it's about being curious, it's about asking those questions. Again, it's about working collaboratively with these communities and asking those questions and really, really effectively listening. Not just listening, tokenism, tick boxes. It's about, you know, remember why you're doing this job. Why have you gone into this, this, this side of your profession? And that without a doubt is to help and support these groups of people. You know, we can't keep them on a pathway that's not working for them. We've got to look at that and address it. And I understand, you know, the pressures from you know, from all angles, really. And of course, you know, the funding, but that passageway that you've just talked about is for the neurotypical person. But we as a society have a lot of different people, and it does not work for everybody. And my assumptions and my my guess is that your neurodivergent communities are failing. And it's because they are being failed. And it's what can we do better? And what I'm taking away from our conversation today is that we are not curious, we're not asking the questions, we're almost embarrassed to ask those questions. And I would say from our clinicians as well, yeah. You know, it's not it's not a dirty secret that somebody might be autistic, somebody might be, I don't know, ADHD, have ADHD, sorry, maybe OCD, lots of those things. Why, why, why are we making it sound dirty? When in actual fact they are a huge part of our community and they are a valued, they're valued parts of our communities. Um, and we've got to do better. We have to do better, not because we're told to, but actually because we want to do better and we must do better.

SPEAKER_00 52:31

Thinking you meant you mentioned obviously just just talking about questions there, and just just to just to bring it back to to Oliver, is there a question that you wish professionals had asked either yourself or Oliver earlier? One that might have changed the course of what happened. And I know it's hard to deal in hypotheticals, but how can we help you best? As simple as that, yeah.

SPEAKER_01 52:54

Ask, listen, do yeah treat Oliver as a human being. He had a voice, his voice was valuable. He understood himself very, very well. Just stop and think and remember why you're doing that job. The one question, how best can I help you?

SPEAKER_00 53:12

I I just want to uh quickly, and and this is a bit of a side question for me, but I I am interested in in the honours system. You are you are obviously is it OBE? Is that correct?

SPEAKER_01 53:22

It's an OBE, yes.

SPEAKER_00 53:23

OBE. I wouldn't even know how that process starts or how it works.

SPEAKER_01 53:27

Neither do I.

SPEAKER_00 53:28

I was gonna say, I was gonna ask, can you tell me a bit about it?

SPEAKER_01 53:31

But No, I can't I can't. Go on, please do. So if somebody nominates you and you don't know who that that person is, you still want to know that. You're not you're not to know. So that's my understanding. So it could have been anybody, and then of course, you get the letter, and you're not allowed to say anything at all. And for me, I I I was my my medal was presented by Prince William, and I really wanted Prince William because we are a military family, we're an Air Force family, and it mattered, it really mattered, but somebody pointed out to me, and you know, honestly, I even get chills now because I don't take any credit for this. You know, this is all about Oliver, and it's also all about our communities. This is who this is about, and somebody pointed out OBA Oliver behind everything. Wow, and I can feel Oliver on my shoulder now. I can I can feel him, and I do often actually. So, yes, it's lovely, it's lovely to have, but it's not that that that award belongs to Oliver and it belongs to for me, I would say it belongs to our neurodivergent communities. I'm just the voice. I'm just a voice.

SPEAKER_00 54:37

You you say just, I I I think as as someone who does, you know, voice for service user involvement, service user activity. I I think this is such an important thing. Just a voice, I think, is actually almost diminishing what you are actually doing.

SPEAKER_01 54:50

What I am, the biggest voices are our communities. I'll do my best. I don't get it right every time, but I try. I try to do, I try to make a difference where I can.

SPEAKER_00 55:00

Paula, thank you so much for for joining me on Believing People. I like to finish the the podcast series with a series of questions just to lighten the mood a little bit. Sometimes obviously, as you can see, there's there's heavy topics that we discuss here. And my first question for you is what's your favourite word?

SPEAKER_01 55:15

My favourite word? Listen.

SPEAKER_00 55:18

Least favourite word.

SPEAKER_01 55:20

Listen, sorry, least favour favourite word. No.

SPEAKER_00 55:23

Tell me something that excites you.

SPEAKER_01 55:25

Making a difference.

SPEAKER_00 55:28

Tell me something that either bores you or drains your energy.

SPEAKER_01 55:32

People that talk rubbish.

SPEAKER_00 55:34

What sound or noise do you love?

SPEAKER_01 55:36

Oh my god, let's out now.

SPEAKER_00 55:38

It's an interesting one, isn't it? I always find it. Do you know what's interesting?

SPEAKER_01 55:41

Sound or noise? I don't know. The school bell.

SPEAKER_00 55:47

Is there a sound or noise that you hate?

SPEAKER_01 55:49

High pitched screaming noises.

SPEAKER_00 55:52

When do you feel most like yourself?

Ask, Listen, Do: Practical Steps

SPEAKER_01 55:57

Oh gosh, that is a really, really interesting question. I think since Oliver left, I don't even know who I am anymore. I'm just Oliver's mum. That's an interesting question.

SPEAKER_00 56:09

What profession other than your own would you like to attempt?

SPEAKER_01 56:12

Oh, do you know? I was always going to go into the medical profession. And because my husband being in the Air Force, I needed to be doing what I was doing. And I was always going to go into therapy to support children going through cancer and different things midwifery as well at one point. I'm a bit old now. I'm 60, I'm old. So, do you know what? I I think we're put on this earth for a reason. I'm I'm, you know, I've lost Oliver, but I think I was put on this earth to do what I'm doing right now. I think so.

SPEAKER_00 56:44

What profession would you not like to do?

SPEAKER_01 56:47

A profession that causes harm, like abattoir or that type of thing.

SPEAKER_00 56:54

And lastly, if heaven exists, what would you like to hear God say when you arrive at the Pearley Gates?

SPEAKER_01 56:59

You made a difference. And all of us here.

SPEAKER_00 57:02

Paula, thank you so much for joining me on Believe in People.

SPEAKER_01 57:05

Thank you. Thank you for having me. And thank you for doing the work that you do.

unknown 57:09

Thank you.

SPEAKER_01 57:10

It's very important.

SPEAKER_00 57:11

I appreciate that. Thank you. And if you've enjoyed this episode of the Believe in People podcast, we'd love for you to share it with others who might find it meaningful. Don't forget to hit that subscribe button so you never miss an episode. Leaving a review will help us reach more people and continue to challenge stigma around addiction and recovery. For additional resources, insights, and updates, explore the links in this episode description. And to learn more about our mission and hear more incredible stories, you can visit us directly at believinpeoplepodcast.com.