Mental capacity

What I want to talk to you about today is mental capacity from my perspective as a neuropsychologist, but I want to just break down some of the myths there are about it. It's overly complex, it's something you know you have to be highly specialised to understand. I want to just break it down for you as simply as I can and share some of my experiences with you.

It's an area I've been interested in for quite a long time. I've written quite a few papers and a couple of books on it. The last book I wrote, which came out at the end of 2021 I think, although it's dated 22, is meant to be a dummies guide. The most basic concepts and principles explained that you can just carry around with you in your pocket, dip into, ask a question about.

I'm looking forward to questions today from everybody. I would start by saying there is no such thing as a stupid question. Every question is relevant. If you think it's stupid, I can guarantee there's probably about 20 other people wanting to ask it as well, so please do ask. And if I can't answer it, that's fine. I'm quite happy to go away and have a look.

So I'm just going to move these slides down. I'm just going to change my screen a second.

What I'm going to talk about is a little bit about the Act, obviously, because I'm trying to demystify it for you. But I'm also going to talk about approaches to assessment, so how we might go about it, what we might need to keep in mind while we're doing assessments of capacity, and what are some of the factors that are actually quite important for us to consider.

So I'm trying to keep it as straightforward as I can, but also demonstrate how it sometimes feels very complex and very weighty.

So the outline of the webinar is:

I'm going to do a brief introduction to the Act, which hopefully everybody listening knows the basics of. I'm going to talk about the importance of being curious in assessments. Now, Alice in Wonderland said curiosity always leads to trouble. Actually, in capacity assessments, curiosity is the best position to start with, to work through, and to end on. Always be curious.

I'm going to talk a little bit more about that, but what I mean is think about why you're doing a capacity assessment. What's the purpose of it? Who's it for? What's it going to impact? How might it be used? What are the implications for the person who's being assessed?

So that position of curiosity is very important, and I'd like you to bear that in mind throughout all of the presentation.

What do we expect of those carrying out the assessment? So there's lots of us who do assessments: doctors, psychologists, nurses, speech and language therapists, social workers, occupational therapists, physiotherapists, lots of our colleagues, particularly in a healthcare setting, carry out capacity assessments. So we need to think about what the expectations are of us that are doing those assessments.

Then obviously, because this is a Headway webinar and I'm a neuropsychologist, I'm going to put it in the context of head injury. I'm going to start by saying, if you don't have a head injury, how do we make decisions? How does the intact, normal and unaffected brain make decisions? So I'll do a little bit of explaining about how that works.

Then I'm going to tie it in with what makes it difficult for us to make decisions anyway, regardless of whether or not we have a brain injury. I'm recovering from some mental health issues at the moment and I've been struggling making decisions because I'm feeling a bit ropey.

Then, when you put brain injury into that mix, how that can affect our decision making. I talk quite a lot about this, how we can support decision making. So if we're trying to assess an individual's capacity to make a decision, how we can offer scaffolding for that, and why we should.

Then what happens when we get to the point where the outcome of the assessment is that the person lacks capacity for the decision.

So that's the journey I'm going to take you on today. I've got lots of animations and colours, just to keep it interesting and try and keep everybody's attention.

So, brief introduction to the Act first. I'm hoping most of you will know this already, so I've lifted this from one of my books.

The Act was designed to protect people who had issues with an impairment to mind or brain, to still be able to make decisions wherever possible, but where they weren't able to, to put protections in place so that their autonomy was upheld. So basically, that was the purpose of the Mental Capacity Act.

Prior to this, and this was my earlier career when I was training, all it needed to assume somebody lacked capacity was a medical diagnosis, and then it would be assumed that you automatically lacked capacity.

So this Act was very welcome when it came along because what it said is we shouldn't make assumptions like that. I often think, I've worked in brain injury my whole career, and I often think, you know, I come across people who in a split second their lives have changed and they lose autonomy. If that was me, if I was in that car accident, or I had that spontaneous brain bleed, or I was assaulted, or my brain function changed, I would want somebody to fight for my autonomy. That's always kind of in the back of my mind when I'm doing assessments.

Oops, hang on.

So the Act then focuses on the person making a specific decision at a specific point in time. That's not strictly true because I think since the Act has come in, what case law has done is to look at what are called performative decisions.

So we do sometimes make one-off decisions. Do I do this or not? Do I have this or not? Do I buy this or not? But sometimes, particularly with reference to finances and managing our day-to-day affairs, we often make chains of decisions which have implications.

So even though the Act says the assessment is for a specific decision, sometimes we look at what are called performative decisions, where every decision starts a chain reaction for other decisions and implications as well.

The other thing to remember as well is that capacity assessments are legal, not clinical. So clinicians get asked to do them, social workers get asked to do them, but it's a legal decision and ultimately it's for the court to decide.

The Act I'm talking about is the one that applies to England and Wales. I know there's obviously the Adults with Incapacity Act in Scotland, there's similar legislation in Northern Ireland, and at the moment it only applies to adults, but there are considerations post-16 and obviously we've got changes coming in when the Act does eventually get updated.

So that's the absolute basic bones of it.

I want to talk about now the five principles that underpin this Act that you must remember at all times.

The most important one is a presumption of capacity. There's one of my favourite Court of Protection judges, Justice Hayden. I love his judgments. Consistently, I've got a quote of his from four years earlier than this, but this is the most recent one where he says, "Look, your starting point is you assume capacity, and you only reject that assumption when you've got hard evidence that cannot be ignored."

I love the way he's worded it in this judgment from this year, where he said you only arrive at a contrary conclusion when the evidence absolutely demands it.

What's good about this, I think, and I've seen in my experience of working with mental capacity, is that when the Act first came in it still felt very paternalistic and very protectionist and very "just in case" or "we'd better be careful". It's been lovely; there's been this quiet revolution in judgments that the Court of Protection have consistently made, which is, no, no, that's not the approach here. The approach here is that you need to prove to me why this person's capacity should be withdrawn, their capacity for decision making, and that's exactly how it should be.

But we need reminding of that. So I think this, for me, is the absolute touchstone of all assessments, as you start and you assume capacity and you're looking for hard evidence as to why you should reject that assumption.

So the second principle is that the person has a right to be supported to make decisions. They have the right to make unwise, daft, silly decisions. I'm going to talk a little bit more about this again.

So in the judgment I'm talking about there with Justice Hayden, and the reference I've put in, he very helpfully talked about the difference between making a silly decision when you haven't got a brain injury and making a silly decision when you have. I've pulled that out a little bit and I'm going to talk about it a bit later.

So if it's decided at the end of your assessment that the person lacks capacity for the decision in question, anything that you do for the person to replace their decision making has to be in their best interests. That's another whole presentation.

Any act that you do on behalf of the person has got to be the least restrictive you could possibly make it.

So you can see all the way through this, the person is protected, the decision making is protected, autonomy is protected, and that has to be what stays in your mind when you're doing an assessment.

So what's the actual test of mental capacity then?

So it's switched in the last year. It used to be a diagnostic test which would lead to a functional test, and that's been switched now. We start with a functional test, which has four parts to this.

Can the person understand the important bits of the information they need to understand in order to make a decision?

Can the person hold on to that information for long enough to use it to make a decision? They can be prompted verbally, they can have prompting in writing, visual cues, environmental cues, all kinds of scaffolding. There are no rules about that. It's not a test of the person's memory. It's a test of their ability to just hold on to it long enough to inform the decision they need to make.

This is the one that I think, when neuropsychology brings a special dimension, and I do talk about this third one a lot. Can the person engage with the information? Can they kind of mentally juggle it? Do they have the capacity and mental flexibility to look at the information from different angles, to weigh it, to think about possible scenarios and implications, and consider what that might mean?

That takes quite a lot of cognitive resource to do that, and after head injury that can be challenged.

So this is the third limb there, the use or weigh part of the decision, which is often where the neuropsychologist, I think, brings a specialist expertise.

Then the fourth one is, once the person's made the decision, can they communicate that by whatever means? And that is by whatever means.

So, the diagnostic test. If the functional test applies, then you have to say, well, is all of that because the person has an impairment of their mind or brain?

So the mind part often relates to psychological or psychiatric ill health, and that's not an area of expertise of mine, but the Act covers that.

Is the impairment temporary or permanent? The reason that's important is, if the person's acutely unwell, do you have to do the assessment now? Can you wait till they're better? Do they have fluctuating impairment? That's an important question you need to ask.

But what brings it together, and this is where you need to join the dots in your assessment, is: is the difficulty making the decision because of the impairment of mind or brain causing them to be unable to understand, recall, use or weigh, or communicate?

So it's called a causative nexus. It's joining the two together. Is one happening because of the other?

So the importance of curiosity.

Now, I talk about this a lot because I think there are a lot of legal experts out there who are just amazingly clever, and I try and follow some of their blogs to learn what I can about the context of the Mental Capacity Act.

One of them is a barrister in London called Alex Ruck Keene, who's amazing. He talks about this kind of threshold for an assessment.

You need to decide at the outset: what is it you're assessing? Why are you assessing it? What's brought you to the point where you're feeling a capacity assessment is relevant and necessary? What's the threshold for that? What standard are you setting? What might the outcome be? How might the assessment be used for the person? What might the implications for the person be?

So that curiosity is really important. You need to be not just saying, "Oh yes, I'll do an assessment." It's more, "Well, let me think about why we're doing this assessment and what it might mean."

You need to look for evidence from different sources, and this is really important.

The person, obviously, their voice is critical.

Their family, if they're involved and they have a say.

Friends, if they're close and they know them well.

Partners.

Professional carers, if they know them very well.

Health professionals, if they know them very well.

There are lots of different sources of information, and they often can speak to different aspects of the person and how they're functioning.

We need to look at patterns of behaviour over time. For example, is the person engaging in support that's offered? Are they complying with medication and treatment? That's relevant.

What's the evidence of difficulty? Again, this comes back to why are we doing the assessment?

Let's look at a picture of strengths and weaknesses.

What's important is looking at what the person can and can't do, but also looking at what they want to do. Sometimes they're perfectly capable but refuse to do it. That might be reasonable, or not.

The last one, and this leads me neatly into what the neuropsychologist cannot ignore, is what the person says they're going to do versus what they actually do in practice.

So that kind of knowing and doing, which we talk about a lot in terms of changes to the front of the brain after brain injury.

So the NICE guidance that we have around capacity assessment says, okay, you can do very structured capacity assessments and that's great, but you need real world information. You need to see how the person's functioning. You need eyes on the person as well. You need to watch them. You need to observe them. You need to see how they are.

The bottom line is that in an interview, and I've been in this position myself, a person can say, "Yes, of course I'll do that. Yes, of course I won't do that. I know I've been told. I know I can see the importance of not drinking after I've had a brain injury, or not crossing the road without help because my vision is impaired."

But it's about whether that gets translated into action, and whether the person can actually do what they say they're going to do. That's really important.

So you're not just measuring somebody's intention, but their actual ability.

What we're expected to do in an assessment is to be specific. But, and I get really frustrated when I get asked to do this sometimes, there is no one-size-fits-all.

I've been asked lots of times in supervision with colleagues, "Can you help me develop a template for executive function and executive decision making?"

You can, but actually every person's different, and you have to meet every person where they are.

So there isn't a one-size-fits-all. There's an approach, and there are principles and parameters and presumptions, but you have to listen to what the person's telling you.

What's their body language telling you?

What are all the non-verbal cues telling you?

Are there cultural issues you need to take into account?

Are there contextual issues? Do they live with someone whose influence might not be brilliant?

Are they suggestible?

Because sometimes, and there's a lot written on this in psychology from the last 50 years, the way you frame a question can determine how you get an answer. It's called framing theory.

So if you've got someone who's a little bit suggestible, or acquiescent, or eager to please, or the power imbalance is such that they feel their voice has to be led by others, if you're not careful you can get the answer that you're trying to get rather than the right answer.

It's really important to know what medicines people are taking because medicines can affect judgement and decision making.

Are there any underlying health issues that are significant?

For example, if somebody's got really poorly controlled diabetes, that can affect your frontal brain systems. That can affect your decision making.

If somebody's in chronic high levels of pain and they're not sleeping and their mood is low, that will also affect decision making.

Are there risk factors at play that might be difficult to manage?

Is there evidence of poor judgement in other areas of somebody's life, for example?

But the most important thing is to be absolutely transparent.

What you asked.

Who you asked.

How you asked it.

When and where you asked it.

What answer you got.

Did you follow it up?

What did they say?

What did you observe?

It's just lining everything up in a row.

And don't mix your assessment up with your outcome.

I've seen this myself in lots and lots and lots of medical notes, where somebody will have written, "Mental capacity assessment undertaken," and underneath a one-liner which says, "Lacks capacity."

It's like, no, no, no. You've missed a whole process out there that's really important.

Sometimes, and this has happened to me on a number of occasions, an assessment becomes therapeutic in itself. I might start the assessment and think, actually, this looks like they're lacking capacity, and actually do an intervention with somebody to put scaffolding in place to bring them to the point where they regain capacity.

That's equally important.

So take your time.

I know time is a luxury we don't always have, but even if something is urgent, I think you have to be confident that you can sign your name to something and that you've done a good enough job.

So let's talk a little bit about how the brain makes decisions when it's working fine.

This is the tech nerd bit, apologies, but I love brains.

These three colours are the three bits of the front of your brain that are really heavily involved in decision making. You don't need to remember what they are because I've got a lovely seesaw picture for you.

So if you imagine decision making does work like a seesaw, doesn't it? If you think about it, if you're tired you might make decisions more quickly. If you're feeling very supported and you've got lots of time to think, you can take your time.

These three areas of the brain kind of work in tandem when they're working properly.

You've got the bit of the brain which is the "go for it". You know, I'm going to do it. I'm not going to think. It's the impulsive me. Why not? It's silly, but hey ho.

Then you've got the opposite system, which is the pause button, or the cerebral brake we sometimes call it, which is there saying, "Well, let's just have a think about it. Let's just stop and pause."

Then in the middle you've got the bit that says, "Well, how did this work out for you last time? What might somebody say if you did that? What might the implications be?"

So you've got this, I see it so clearly as a seesaw, that's constantly moving, and that's how we make decisions. Big decisions, small decisions.

What we'll find is that depending on how we're feeling, some systems will be more powerful. Depending on the magnitude of the decision, so buying a house, you're going to be a bit more reflective. Having that second pudding after you've been out for dinner, you might be a bit more impulsive, for example.

So what affects this system in all of us?

Whether this is absent of brain injury, this is just all of us here today.

If we're not feeling very well, if we haven't slept or we're exhausted, if we're in pain, if our mood isn't great, if we've got lots of anxiety and that kind of internal noise that comes with anxiety, or the what-if, catastrophising, panicking thing, and medications, what others might think of us, all of those influence that seesaw.

It's a completely dynamic system.

Oops, there we go.

Previous experiences also do as well.

So brain injury and decision making.

Thinking of our normal seesaw, let's now put a brain injury on top of that and just see what happens. As you can imagine, it might not go great.

The caveats for me, I guess, are that no two brain injuries are the same. No two people who sustain a brain injury are the same.

But frontal brain systems, where the decision making kind of sits, are always affected by any brain injury. We've known that since 1964, since the research paper by Teuber.

So we know that no matter what, whether it's a brain infection, a brain tumour, epilepsy, a head injury, a traumatic brain injury rather, a bleed, a blockage, a lack of oxygen, anything that affects the brain system not working well, frontal systems are always interrupted.

That's because the front of the brain is very much the kind of conductor to the brain's orchestra. So it's got that kind of executive, higher-order, bringing everything together, letting it work as a system approach.

So we have to bear in mind that where there's a brain injury, there may be an issue with decision making.

That's a very bland statement because it depends on the brain injury and the person and the decision, but we need to bear that in mind.

So what's all this got to do with making decisions and mental capacity, I hear you say?

Well, if we know that someone's got a brain injury and we know that we need to do an assessment of capacity, we know that brain injury makes people's processing a little bit slower, so we give extra time.

We know that distractibility might be an issue. If there's lots of background noise going on, I don't know, people in the next room, traffic outside, radio playing, limit the distractions because it enables people to direct their resources where they need to go in terms of attention.

The person after the brain injury might struggle to take on board new information. That's very common after an acquired brain injury.

So we give the information many times.

We give it in writing.

We give it verbally.

We prompt them to learn it.

There are different learning techniques we can use to enable somebody to acquire that new information, maybe in a different way to how they might have done before their injury.

The person might get tired easily. Fatigue is a big issue after brain injury. So we don't ask them to do an assessment when they're tired.

If we're part way through an assessment and we can see they're tired, we'll say, "You know what? We can carry this on tomorrow, next week. Go and have a rest. It's fine."

Sometimes the person, the impulsive system, might be winning too often and we might just want to say, "Well, you know, that's great that you think that's what you want to decide and that's fine, but why don't you just have a think about it and I'll come back and have a chat with you in a couple of days?"

Have a chat to whoever. Think about what might happen if you made this decision.

Just be somebody's pause button if they don't have one.

But sometimes this isn't enough.

Sometimes after a brain injury, what we find is that people have the concrete facts and the knowledge, but they can't apply it to adapt their behaviour to inform their decision making.

I'm presenting a couple of cases later in the presentation where I'm going to talk about this.

So it's that disconnect between knowing and doing.

We neuropsychologists and others talk about this as the frontal lobe paradox.

So the person's talking the talk. They're telling you what they understand. They're telling you what they need to do. But they're not able to convert that into the action that needs to happen.

That can be tricky with decision making.

There's a very famous neuropsychologist, who sadly passed away now, called Melanie George, who wrote an amazing paper in 2018 that we all talk about in terms of frontal lobe paradox.

She wrote it with another researcher who I've met, who's lovely.

They're basically saying, look, somebody might come across as completely plausible. They might be articulate. They might have preserved social skills. Their behaviours are completely normal. But they just have this disconnect which means they don't understand what they don't understand.

So they don't know that they're not making these links. They don't know that they're not putting thought into action in the right way.

And it makes the person vulnerable.

So, as I said before when I talked about the functional test, the bit where I think this frontal lobe paradox, this disconnect between knowing and doing, really comes into play is in the use or weigh function.

The Code of Practice that goes with the Act actually flags this up.

It says sometimes people can understand the information, but something stops them using it.

Or sometimes somebody might be polite, they might have good manners, they might be articulate, but they still don't necessarily understand in order to use or weigh the information.

So it's about not making assumptions, isn't it?

We're making a presumption of capacity, but we shouldn't make assumptions about somebody's abilities. I think that's my starting point as a clinician.

So remember I said to you that Justice Hayden just teased out this difference between making a silly or unwise decision when you don't have a brain injury and when you do have one.

Neuropsychologists like using complex terms, so I apologise for this, but I'm going to explain what I mean.

Neuropsychologists talk about something called cognitive dissonance, which affects everybody irrespective of a brain injury.

It's knowing something but deciding to do something else.

A classic example, if you're taught psychology at undergraduate degree level, they always talk about cognitive dissonance in terms of smoking.

Everybody knows there is a proven link between smoking and cancer, and that cancer can kill you, but people smoke anyway.

So they weigh up the decision and they decide, "To heck with it, I'm going to smoke."

Another one might be, I've got a really early start in the morning, I've got a meeting at seven o'clock, I've got to be on my game, I'm out having a drink, someone's just offered to buy another round.

"Oh, I'll go with it."

That's cognitive dissonance.

So we're able to do that. That's our seesaw at work and we're deciding, "On balance, I don't really care. I'm going to go with it."

We're able to do that.

The difference after a brain injury is that it becomes frontal lobe paradox.

Frontal lobe paradox only occurs in the context of brain pathology, so when there's been an acquired brain injury.

The person can be given all the information but can't make those connections to use or weigh, may not be able to see all the possible consequences or what they might mean.

Some examples might be:

"Well, I lent this person money and they didn't pay me back, but they're asking me for money again, so I'll give them money."

Or:

"I've run out of my medication, but I can't be bothered to go to the doctors," even though it might be seizure medication, for example.

So you can see that it feels as though we're talking about the same thing, but the big difference is on the right-hand side you've got someone with a brain injury, on the left-hand side you've got a person without.

That's the difference.

So what happens when your seesaw doesn't work then?

I'm going to present a couple of cases of this.

Sometimes when the seesaw doesn't work, when there's been an acquired brain injury and the system isn't as effective as it might be, it's not dynamic in the way it should be, you might get someone who can only pause and who gets kind of locked into behavioural patterns where they can't make a decision.

You can get people where they are making constant impulsive decisions and putting themselves at risk.

You can get where the middle bit's broken and they're unable to tie into previous experience and foresee possible consequences and risks to themselves.

Any of those bits can be broken when there's been a brain injury, and all of that affects how we make decisions.

So I'm just going to present a couple of really brief cases, cases I've been involved in. I've anonymised them and I've changed some details so they shouldn't be identifiable, but just to give an example of what it's like to do a capacity assessment with someone who can't join the dots.

This first one is a chap that I got asked to see a few years ago who'd been diagnosed with alcohol-related brain damage.

He'd been a drinker for many, many years and he'd got himself into lots of pickles and his life had turned upside down. He had been to prison, I mean he'd just been on this awful path that alcohol had taken him on, and he'd ended up with alcohol-related brain damage, which was permanent.

He'd been discharged from prison into a hostel and converted onto a DoLS, so he was on deprivation of liberty, which meant he wasn't free to leave and he was under continuous supervision.

But he was appealing his DoLS. He didn't think he needed any support, didn't think he needed to be in the hostel, and there was a long list of assessments that I was asked to do about his decision-making capacity.

One of which, the only one I'm going to talk about today, is the one about managing his own medication.

So he was on quite significant medications for seizures. He had underlying chronic health conditions that had to be daily medicated. He was on thiamine as well, obviously because he had alcohol-related brain damage.

So he was on lots of medications which were really important and shouldn't be missed.

He was adamant that, first of all, he didn't need any medications. But if everybody insisted that he did, he wanted to manage them himself.

He was in this hostel, which was really well managed.

So I did three interviews with him by myself on video and telephone because this was in lockdown, so I wasn't able to see him face to face.

I had thousands of pages of records, care plans, risk assessments, daily logs, records, everything you could imagine. Thousands of pages.

I met his social worker. I met one of his daughters. I interviewed the team leader and home manager twice as well.

So it's that idea I said to you earlier about making sure you get information from lots of sources.

Then I was able to see that the team in the hostel had put in a nine-month plan of trying to get him to the point where he could manage and administer his own medications.

He'd had multiple, multiple copies of his medication administration record chart which had been simplified. It had been colour-coded. There were visual pictures of each medication. There were written prompts because MAR charts can be quite hard to follow if you're not clinically trained.

So it would say what time of day, what the name of the tablet was, what it looked like, how many he needed, how he had it, whether it was orally or otherwise.

It was all designed specifically for him.

He kept losing them. He was mislaying them in the hostel.

There were multiple prompts in the environment.

There was a medication room, so he initially was prompted to make sure he went there. Then he would be asked, the next stage would be, if he could do that regularly, for him to prompt himself to go to the medication room.

Then it was medication in his room, kept in a locked box, but he would have to prompt staff to unlock it.

So he was given gradually, the plan was to give more and more and more autonomy for him to be able to manage his own medications.

Despite nine months of this, there were several dangerous medication errors which would have occurred if staff hadn't intervened.

So taking two lots of one tablet, none of another, missing doses, and there'd been no changes to his medication regime throughout the whole nine months.

So it wasn't that there was room for confusion because he'd had a dose changed or a new tablet introduced.

He couldn't identify any risks of harm with these errors.

When challenged, he would get quite irritable and say, "Well, I don't need any medications anyway and I don't know what we're doing this for."

He would get quite defensive and difficult.

But I have to say, I think the staff did a tremendous job in trying to get him to the point where he had capacity to manage his medications.

When you met him and talked to him, he was utterly plausible. He was very articulate, fluent, well spoken, but had an absolute and complete lack of insight.

His daughter said, "Well, he's very eloquent and he makes people think that he can understand things that he probably doesn't."

The home manager said, "Well, he'll tell you what he thinks he can do, but it bears no resemblance to what we've assessed he needs support with."

His GP said basically, "Please don't let him manage his own medication because he's not safe."

But in spite of all of this, what the court said was, "Can we please try it?"

They did try it and I think it got to the point where everybody just said, "Look, we have given this the best possible shot that we can."

Ultimately he was deemed not to have capacity to manage his medication.

It's a good example of how you can try and put a piece of work in place and scaffolding and support to get somebody over the line if possible.

The second case I just wanted to present very briefly, this is a bit shorter.

This was on a ward I used to work on, a regional ward for post-acute neurorehabilitation.

There was a young male who'd been in a car accident and he appeared to have made a remarkable recovery from a very severe brain injury.

So he was walking about, he was talking, he was self-caring, needed minimum prompting within this very structured ward environment.

As he was physically improving, we got to the point where he was now safe to eat and drink without needing a PEG because he'd had a PEG put in.

The clinical decision was made that the PEG was no longer needed. It could be removed surgically.

He was really happy with that. He wanted to have it gone. It was a reminder of the accident. He didn't need it anymore.

So the surgery was scheduled and it was all going ahead, and it was fairly straightforward. It's a day case. It's not a big deal.

However, how he presented was that he would be quite disinhibited and impulsive on the ward.

He could be quite irritable, but also had quite poor emotional tone, and he was very distractible.

A couple of times he worked out what the keypad code was to get off the ward. I don't know if he watched staff or visitors coming and going, this is pre-Covid.

He was found walking the wrong way up the motorway near the hospital at one point trying to get somewhere.

So he wasn't able to foresee danger and keep himself safe, and he had quite substantial memory problems.

But if you met him, he was walking, talking, interacting, and the extent of his cognitive and behavioural difficulties wasn't immediately clear.

We got to the point where the PEG was meant to come out, which is what he wanted.

So all the ward team were on board. There was nil by mouth from midnight because you've got surgery at midday tomorrow.

So he agreed to empty his bedside locker of any food and drink.

Ward staff said, "In the morning you're not to have breakfast. You mustn't have a drink."

All the morning of the surgery he was reminded, "Don't forget you've got surgery at 12. Don't forget they're coming to get you at this time. Don't forget you've got this."

But at 11:30am he wandered into the staff kitchen and ate a muffin because he fancied a muffin.

It's fine, but what that meant was that the surgery couldn't go ahead because obviously he'd be at risk with the anaesthetic, and it had to be rescheduled.

He was distraught.

This is a classic example of, even with scaffolding, how somebody can't join those dots between the knowing and the doing.

It's a really good example of that.

It was rescheduled and it was all fine, but it's an example of how somebody can be plausible, articulate, present as being able to make decisions, but still just not join those dots and then put themselves at harm.

So, summary of what I've done so far.

I'm sorry if I've run over a little bit.

The Mental Capacity Act has, as its core assumption, that everyone has capacity. That's your starting point.

If you don't remember anything else I've said today, please remember that.

I want everybody carrying out an assessment to be curious.

Why am I being asked to do this?

What's the purpose of this?

Is it going to benefit the person?

What might the outcome be?

What might the implications be?

I can think of lots of times where I've had to ask quite difficult questions like that.

For example, I can think of having a lady on our ward who had quite a catastrophic brain injury, and her husband used to come and try and do her personal care.

We became aware that it was a coercive controlling relationship with lots of domestic abuse.

We were asked to look at her capacity to decide whether or not she wanted him to see her naked and wash her and be alone with her in a cubicle when she was vulnerable.

And asking, what might the implications of that question be if we proceed with that assessment?

So it's all about saying, who wants it, why do we want it, what's the threshold of capacity that we're looking at?

When you're thinking of assessing a person, look at patterns of behaviour.

Don't just look at one-offs.

Don't just look at what the person's saying.

Look at what they're doing.

Look at possible influences, whether they're internal through pain or anxiety, whether they're external through influence or medications.

Be as supportive as possible.

I've heard an assessment described as a conversation, and that's what it should be.

It shouldn't feel like it's a pass or fail test.

If it feels like that, then we're doing something very wrong.

If possible, put the scaffolding in, recommend the scaffolding, and that the assessment be postponed until somebody might get over the line if they're not quite there.

Be very mindful that for some people, this idea of not being able to connect the dots between knowing and doing is a real thing, and it's not always immediately obvious.

That's why it's important to be thorough in the assessment.

Be transparent.

Be clear how you've got to your assessment plan and your assessment process.

Be sensitive to the person.

I always think, if this was me, how would I like somebody to assess me?

I think I'd probably be quite difficult.

Be considered in your assessment.

Be mindful.

Be wise.

Don't set the bar higher than you would otherwise.

Don't assume that the person has to meet a higher standard than somebody else.

Be careful that you're not doing that.

And that's the end of my presentation.