Mental Capacity Act: Is it being used to empower people? Complete session

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Mental Capacity Act: Is it being used to empower people? Complete session

good afternoon I think it’s afternoon there’s the Sun yes can y’all hear me great well thank you very much for coming and thank you for thinking about the Mental Capacity Act is something that might be empowering I assume that you think that because that’s why you’re here I think it should be empowering I think we’ve got to make it empowering and I think you’ve got to help us make it empowering so that’s what I’m going to talk about today today we going to talk about four things I think I’m going to talk a little bit about institutions because some people live in institutions I’m going to talk a little bit about people living in the community I’m going to talk a little about that who should be doing the empowering work and I’m going to talk a little bit about the Mental Capacity Act so if we start with a sociologist who spent about 15 years ago he spent a year working in institution as a care worker this was an America and it was a large institution it had some 7,000 people living at it at the time and he published lots of rest days and lots of books about it and he basically said that institutions may be dangerous there might be dangerous because they expect people to play certain roles they expect the staff to play certain roles and they expect people patients to play certain roles and that is a dangerous situation I thought we’d have a quick think about what their word danger means because danger doesn’t necessarily mean the same thing as bad dangerous this could be dangerous crossing a road but it doesn’t mean it’s bad crossing the road so we have to think about what the word dangerous means and how we protect against things that could be dangerous and I think there’s four ways of looking at danger in institutions there’s a danger of physical harm for example in Winterbourne we saw things about physical harm this danger of neglect about people not being cared properly there’s danger that people’s identity is being damaged in some way and danger that human rights are restricted so prevention empowerment is all about chopping these dangers from happening skip that let’s look at communities for a moment what prevents and what empowers people in communities if people have good personalized care plans that empowers people if there’s a choice about what support packages they have that empowers people if people are offered direct payments and they take them up that’s empowering if people are helped have strong voices in reviews that’s empowering when people have a circle of support that’s empowering and consulting people you choosing who should be consulted whether its family members or friends or advocates that’s empowering to lots of people should be doing empowerment the government should be doing empowerment and that’s us Department of Health and other government departments the courts should be doing empowerment and there should be lots of guidance on empowering as well the regulator’s the CQC should be doing empowering the College of Social Work and commissioners commissioners have a very very big role in empowering in purchasing and commissioning and contracting in relation to empowerment managers and staff that could be for example you managers building relationships and partnerships with service users that should be empowering and investing in these relationships through training through health ping through scrutiny all of this should be empowering social workers I think it’s an important role that you have not just in protecting people but also empowering people in being client led in visiting clients and empowering clients to ask to complain to report and helping people clients to lead their own reviews and you also got a big role in whistleblowing again like in Winterbourne so how does the Mental Capacity Act help us to do empowering lots of ways it’s got to focus on people who may lack capacity so it’s one of the few pieces of legislation which is almost entirely around people who may lack capacity to make decisions and it’s helped to make decisions and the Act says we have to focus on people’s wishes and we have to help them make their own decisions look at act as some empowering principles and the acts got lots of champions and ambassadors people who think it’s a useful piece of legislation people who want to use it I want to talk about nine ways of using the Mental Capacity Act and as I’ve only got ten minutes I’m gonna rush through them one of the first things that the Act says is that professionals need to help people make decisions so it’s not make decisions for them or about them but it’s helped people in all contexts to make their own decisions where possible the other thing that care the Mental Capacity Act says is that care plans should have wishes and feelings in them so if you’re working on a care plan

or if your relative has a care plan look to see where the person’s wishes and feelings are is there is it document it doesn’t say this person likes this things wants to do this things likes to go horse riding wants to do art whatever it is is that in the care plan and our people being helped have their wishes and feelings care plans should also be based on life stories so people looking after other people should know a bit about the history of that person should know what good experiences they’ve had what poor experiences they’ve had and should build on that the Mental Capacity Act also says there should be an assumption of capacity so no matter what form of learning disability somebody has the sumption the starting point should be that they have the capacity to make a lot of decisions and that of course means that professionals have to offer choices so that people can make decisions about them a fifth thing that the Mental Capacity says is that there is a right to make unwise decisions we need to think about what that means doesn’t it move often means risky decisions and if we’re social workers care workers it’s difficult to but to allow other people to make unwise decisions and risky decisions but the Act says that people are allowed to and that we have to help them with that then the Act talks about best interests it talks about making decisions and helping people to make their own decisions in a framework that’s called best interests so what is in somebody’s best interests another thing the Act talks about is choosing the less choosing things which are less restrictive of people’s rights and freedoms so it’s about thinking what a person’s right to family life is if they’re an institution what their right to privacy is their right to be involved in the community and in social activities and all these have to be done in a way that’s least restrictive of their app of their rights and then there’s questions for people our managers about how we plan is there we’re on Mental Capacity shoes at its heart and then finally I just want to say something about something that’s called the deprivation of Liberty Safeguards it’s a horrible term and people often focus on the word deprivation they think it means taking something away I don’t privation Liberty safeguard you have to focus on the word safeguards it’s a safeguard for people who are unable to do things and therefore need to be constrained and restricted and deprived and in a care home or in a mental hospital or a different hospital setting the safeguards are actually positive safeguards so if somebody is offering your declaration Liberty safeguard in relation to a relative it’s actually very empowering for the person and very empowering for the family it means the person gets an advocate it means a person can take things to court for free to the Court of Protection and it safeguards the rights of the person through a whole series of assessments so that’s the positive way of thinking of a declaration of Liberty so I’m going to stop there because I’ve been told ten minutes only but I’m very happy to answer questions at the ends of the session thank you okay thanks Paul and good afternoon everyone or good lunchtime I guess to be accurate and so I’m gonna briefly talk about a piece of research that the Mental Health Foundation undertook that looks at best interest decision-making under the Mental Capacity Act and I’m going to particularly focus on the issues that arose from the research affecting people we learned disabilities obvious reasons their families and staff working with them and I hope to answer the question about whether or not it’s an empowering piece of legislation or certainly throw out some minutes of some issues in the course of my presentation so the research just to give you a bit of background research is a collaboration between ourselves Nora Frey Research Center at University of Bristol and the University of Bradford and was funded by the Department of Health the research is available on our website and don’t all the reports you can download that for free we’ve also brought a very small number of the summaries which are there on the front desk but you can also download that for free from our website as well just for those you’re not familiar with us we’re a UK charity we do use social research development work provide information to the general public we incorporate the foundation for people with learning disabilities so all we do work on obviously issues affecting people to learn disabilities as well as people with mental health problems dementia so we can speak with some Authority about how something like the Mental Capacity Act affects a range of range of people who who may become under it and we’ve done various bits of work including campaigning for the act back in five or six years ago other research around the Act and doing service development work to support its implementation as well so the goals of the research was to find out really how best interest decisions are being made under the the Act I’m going to refer to it as the MCA Mental Capacity Act I hope that’s okay just otherwise it’s a bit of a mouthful and what are the kind of issues that come up when making

decisions making best interest decisions that’s decisions made on behalf of people who are unable to make a particular decision themselves in a range of different decision-making contexts for it and the three main areas we’re looking at were health health decisions decisions around social care and decisions around people’s property and financial affairs and the way we did the research was we had some focus groups that beginning to sort of focus down on the particular questions who wants you to ask we then identified four geographical areas around the country it was England only so in England where we wanted to carry out the research and we then had a various range of methodologies the first one being asking people in those four geographical areas mainly through NHS trusts and local authorities but also the voluntary sector the care home sector to complete an online survey and then from that online survey with good good response rate without 39:2 people do the survey we then conduct you some telephone interviews and some face-to-face interviews to look in more detail about how best interest decisions have been made and just one point about the online survey we call the Bridget my sister said is that because that’s I’m your sister and I said no it’s not it’s and that complicated anagram of best interests and various other words but we incentivize people to complete the survey because it generates when you complete the survey and it’s still available it’s it’s a series of questions you work through around a best interest decision you’re involved in it generates free and confidential reports that sent to you and no one else explaining how well the decision you’re involved in adheres to the Mental Capacity Act so there’s a kind of it’s a Learning and Development tool as well as a way of collecting data so in terms of respondents the majority people who responded to the survey and we subsequently interviewed were healthcare professionals that’s because in for geographical areas are simply the more people working within the healthcare sector than the were and the social care sector particularly in statutory agencies but that 20% represents about 77 social care professionals and I should just say the were a number of people from the care home sector from advocacy organizations and some family carers who responded as well and the greatest number of decisions were about people with dementia but you’ll see that decisions involving people learning disabilities were about a thirty four percent of the respondents which by my calculation is about a hundred and thirty decision making situations involving best interests were reported on through the research involving people with learning disabilities and yeah I know those figures don’t equal a hundred percent when you add them up that’s because some people had more than one disability or impairment in terms of the types of decisions the majority of decision the greatest number of decisions were healthcare decisions and for people learning disabilities that was also the greatest number of best interest decisions that were reported but what we found in research that although the decision was say something to do with medical treatment consent to treatment for example involving someone with a learning disability actually when we dug down a bit deeper and did the interviews they’re often other decisions involved such as issues do with social care accommodation and safeguarding so sometimes there was a multiplicity of decisions that were being being that we were we were finding out and usually health care decisions arose because of a change in someone’s health health health condition or deterioration social care decisions studies revolve around accomodation and safeguarding featured quite so strongly what we didn’t find were many many so everyday decisions involving people learn different C’s or other impairments which was interesting it tended to be the big decisions of significant decisions that the research was picking up 20% of the online survey said they were describing best interests that it involved more than one of the above health care and social care which for those of you who know the Act the MCA that’s not correct because you have to make a best interest decision around a specific issue not a range of issues so strictly speaking people weren’t adhering to the law there we think that might have been partly explained because people for example in the complex hospital discharge meeting may have been dealing with more than more than one decision and that’s why they reported that but if people are making decisions best interest decisions we’ve already a range of issues for someone will learn disability like that that’s clearly not empowering and it’s not in line with the mcae so the learning point there so I’ll try and summarize the the key findings in mine probably five minutes or whatever so what the research found was the MCA was widely welcomed by most people most practitioners most care most

staff most people who come across it and were using it they found a helpful piece of legislation it clarified what had previously been a confusing area of the law it was felt to give people rights people who may lack capacity in her to enhance their rights as well as clarifying the roles and responsibilities of practitioners and the research showed those high levels of everyday practice which was adhering to the law and the code of practice and as you might expect social care professionals particularly emphasized the importance of using the MCA to advocate on behalf of people’s rights protect people’s rights so I haven’t got that broken down in terms of social care professionals work because people learn disabilities but that’s encouraging to see that social care professionals were very conscious it’s a piece of legislation that should be used to empower people to support people to make decisions and apologies to any healthcare professionals in the room but contrary to negative stereotypes that are sometimes held about health care professionals they came out of the research well because they were saying they often took into account personal and social factors were making best interest decisions and they consulted with others were making decisions so the concepts of the doctor knows best wasn’t reflected in this research but it was a self-selecting sample so one can never draw too many conclusions from from that kind of point however the were some more greater areas of concern and I’ll go through them firstly we had we are some questions about how an assessment of capacity taken place that led to a best interest decision and seemed to what came up on several in number of occasions was a lack of insights by the person who lack capacity was equated with a lack of capacity now lack of insight is not in the mental capacity Act all the code of practice as a way of find as a as a test for lacking capacity lack of insight was described in research as all they they don’t have no insights and their care needs or need for health care treatment so that was a concern something which is not in the legislation was being equated with what the legislation says certainly insight may be important if someone isn’t clear about what their care needs are in determining capacity but it shouldn’t be conflated to mean a lack of capacity itself people’s capacity in this particularly was concerning for people learn disabilities people’s capacity was still being judged by their impairment the point of the MCA partly was to get away from blanket judgments around this person as a learning disability therefore they can’t make decisions but particularly people with more severe learning disabilities the fact they had a severe learning disability was taken as a as an assumption they couldn’t make a range of decisions on a range of issues that’s not in keeping with the Act it’s not in keeping with a decision specific nature of that and that was concerning I think about 17% of the online cases that’s 50-plus cases that are reported on were where this general assumption of lack of capacity was reported so that was a real concern and it also relates a thing to what was coming through particularly if people learn disabilities that people weren’t sure whether an unwise decision perhaps someone making unwise decision about their money for example or who they socialized with or maybe that’s because they lack capacity and there was confusion about an unwise decision which could should still mean the person has capacity with meaning it’s actually a lack of capacity the person has because of issues to do with risk and safeguarding and I’ll come back to that point in a minute okay so and and what the other concerning thing was that in 36 cases reported in the survey that was reported the person had capacity even though a best interest decision was made on their behalf so I hope most people in this room know that you don’t make a best interest decision on behalf of someone unless they lack capacity so why there were 36 people who are having a best interest decision made on their behalf we don’t know the majority of those were in health care matters I don’t know how it breaks down in terms of learn disabilities but it’s a real learning point perhaps to share with your colleagues I’m sure no one in this room will make that mistake but to share with your colleagues if there’s that kind of that kind of things happening and I won’t read through these quotes because I’m conscious of time but there’s a couple of quotes here one sort of conflating this kind of all mild autism challenging behavior etc etc with all therefore we felt you lack capacity a second quote I think illustrates well about involving others involving family carers paid carers understanding a person’s different means of communication to try and ensure that they were able to make a decision or supported to make a decision wherever possible we’d looked at their way best

interest decisions were made and often these were through meetings or a series of meetings I won’t go through this slide in detail and just to say that series of meetings are the most common way but that tended to be more for social care decisions rather than healthcare decision people learn disabilities attending not to be so involved in best interest decisions meeting decisions meetings which was concerning in some respects but there was a lot of really good evidence reported about how they’re involved in the decision outside the meeting through involving circles to support person-centered plans using communication methods which enable them to make their views known without sitting down in a formal meeting so that was encouraging to hear and family carers in particular often involved in the best interest decision meeting a certainly that as reported so that was good to see that that was taking place as well but decision-making was complicated in multidisciplinary settings because what it says in the Act says all decision-maker does the best interest decision blah blah blah and actually in multidisciplinary settings it’s much more complicated than that particularly when you’ve got a range of complicated decisions to make so here’s an example of knowledge that’s by a practitioner that’s not a single person’s decision multidisciplinary working is helpful but also a quote there if you have time to read it that sometimes it could be a bit of a fudge that no one actually really wants you to make a decision people couldn’t quite decide what to do and that didn’t necessarily in the best interest of the individual I’ve got about a minute to go Paul so there were some real concerns about the the research race and concerns about risk and safeguarding sometimes overriding the Mental Capacity Act and what I mean by tail wagging the dog was and this certainly affects some people learn disabilities and people with dementia as well is that there was an example example of someone who was felt not to be managing their money very well socialize with people who are taking their money off them personal learning disabilities and all it’s a risk it’s a safeguarding issue what can we do how can we use the Mental Capacity Act it’s a safeguard them oh we can make your best interest decision on their behalf and and do it that way which might result in a good outcome but isn’t actually protecting the person’s rights and going about in the right way the starting point should be can this person make decisions about their money and if they can’t then what’s what’s the in their best interest but not using the mental capacity acts to justify a safeguarding intervention unless it’s absolutely clear that the act justifies their so that’s what I mean by tail wagging the dog there was some stuff about dolls as well but I won’t go into go into that they’ll just say something about family carers because this was recognized to be important particularly people learn disabilities it often proved quite complex and challenging the were examples of where family members were excluded from best interest decisions practitioners were reporting sometimes they felt that included family care as well family carers were saying that they felt very much excluded from best interest decision-making process so I’m sure for many of you it’s an ongoing challenge or at how you balance the rights of an individual learner sort of tease their decisions to live in a certain way with what you feel is perhaps and appropriate sort of form the support or intervention and in addition to that you may be our family members are saying this is in their best interest this is what’s best for them and as Paul says I think it’s particularly difficult for parents of people learn disabilities have been used to making decisions on behalf of their son or daughter age 16 son it all changes and best interests and the MCA kicks in so that was proving to be particularly complicated for people it’s been a very long minute that’s very long now okay well that’s my last point is just to say that so what the research showed there’s some really good examples of the axe being used to empower and protect people support from safeguard people who learn disabilities but in some cases it wasn’t always wasn’t it wasn’t such a positive message and I think this this point is a kind of a nice point to end on because it sums up the kind of tricky balance that people working learn disabilities had to had to make when using the act about balancing up a various range of issues do the people’s best interest but always aware of the person’s willing to change their mind and be involved in future decisions in the future thank you very much so I’m really going to pick up on the practical implications of the Mental Capacity Act and probably will concentrate on assessment as taupey stashed quite a bit on their best interests when you might question capacity first of all person has to have a mental disorders defined by the MCA probably going to country it may appears I’m going to contradict what was said earlier but if you’re working with someone who does have a mental disorders defined by the MCA and they’re making a

series of several unwise decisions it doesn’t mean they lack capacity Steve I’m sorry some people are indicating they can’t hear I don’t know whether we can turn the microphone up or property so you could just speak a bit louder yeah better okay so if you’re working with someone that does have a mental disorders defined by the MCA and they are making a series of unwise decisions doesn’t mean they lack capacity I would say that this extra emphasis needs to be placed on the actual assessment and perhaps looking at the assessments previously if you believe the person is being coerced they’re suggestible or more likely to acquiesce you know and then you might begin to question that individuals ability to make a particular decision some of the common scenarios which have already been mentioned which you may be involved in to assess capacity we’ve heard it should be decision specific and someone may be able to make one decision but not be able to make another you know it can be partial temporary I mean a lot of cast aspersions and if you find people here that 12 o’clock tomorrow night you may lack capacity 12 hours later and Saturday morning you may have regained it so it changes it fluctuates so who assesses capacity this will normally be the person which who would implement the decision if it was going to go ahead in the person agreed so in two case of surgery surgeon dental dentist etc it would be very good practice for that assessor to involve parents family support workers health and social care professionals in that assessment people that know the individual well and specifically the way the person communicates second principle the Act especially important for people with learning disabilities you know we have a responsibility to enhance capacity to show that we’ve to demonstrate we’ve given enough information in a way that is accessible to that individual and their individual communication needs at this point we’re actually giving the person information if you assessing capacity this would be the same time where you would be set in the bar the pass mark for your assessment because in all but in order to give the person the information they need to make this is you need to know what information they need to have so you give it an example of any medication out of the British National formulary will come we have a whole range of possible side effects and it would be impossible for anyone to remember every single one so that person who we’re assessing their capacity they need to be able information on a the likelihood the ones are more likely to happen or be the ones that will have the greatest impact so they wouldn’t need to remember every single side-effect of paracetamol oh I’ll give you an example if any of us were going or anybody with a low disability was going for general anaesthetic you would be required to know under your capacity assessment that there’s a one in four quarter million chance of dying through that procedure if you actually owe an average person it may increase with certain other conditions so you would need to know that because that having the greatest impact status approach to capacity which Toby mentioned the other one would be the outcome approach which you may have seen implemented in the past giving an example I take my nephew’s out to McDonald’s Saturday afternoon I’ll go so what would you like to drink they’re all Beach four of them will go there coke I’ll say no you can either coke can have an orange or a milkshake so you let the person make the decision you don’t agree with it then you take it away and you made a decision the functional test has four stages and an individual needs to pass all four stages of this test so you need to show that they’ve understood the information relating to that decision they remembered it long enough to make the decision and this through experience this the third one would be the one where sometimes people learn bilities I fail on if they are going to fail would be to show that they’ve actually used and weighed the information as part of their decision-making process and they need to be able to communicate their decision so in terms of a couple of scenarios in terms of medical treatment the person just needs to understand in simple plain English terms what the medical treatment is they don’t need to know the ins and outs in the medical jargon a to know why it’s being proposed what’s it’s printer principal benefits risks and also the same for any alternatives as well they also need to understand what broad terms with consequences of actually you know saying no also in if you’re doing an actual assessment of capacity someone with a learning spirity you may have a history of not being able to make their decisions in the past people taking that privilege away from them they may not know that they have the opportunity to say no so that should be one of your key

questions do you know that you can say no to this or if they agree into the medical procedure or another kind of decision do you know that you the person needs to know that they can pull out at any time they can stop taking that medication they don’t have to do what you what’s being proposed they can change their mind some information you might need to give them you need to give them information and perhaps translate it into an accessible format there’s lots and lots of resources out there these days easy health to org dot uk’ is an excellent resource so some of the questions you might start off with just a very broad question could you tell me what we were talking about earlier and you may get all the information you need back from that one question if not you may need to start to asking some different probing questions so what a good things about having this done will it make the cancer go away will it make me better what are the bad things they might tell you it might not work I will feel very sick so sportin about setting the bar what do you want to hear back from the person to say they have capacity or they don’t and the bar for someone with a learning disability or dementia or anybody else defined under the MCA is exactly the same it shouldn’t be lowered or should not be for any particular group what needs to happen is you might need to change the way that you’re given information to the person you might need to change the questions you’re asking them but the information should be the same and I would suggest to you if you come across anybody that’s lowering the bar it’s because they’re imposing their own values on the individual they want that person to have this treatment they want them to say yes if they’re higher in the bar the pass mark it’s likely that they don’t want the person to have this treatment intervention and they’re trying to stop them from having it a big issue for social workers at the moment care managers capacity to engage in a tenancy agreement to some of the information that might be given to individuals you’ll be living this house with this these people you’ll be paying rent it means you have to pay this amount on this date as a month you have to pay for food electricity bills etc you need to take care of the house that means you have to make sure you look after the things make etc so if you don’t pay the rent or pay the bills you may be told you can’t live there anymore the person who owns the house this is who you pay rent sue is the Housing Association they have to do things for you because you’re living there they have to let you live here and make sure things work etc so it’s about giving them the right information and then asking questions to actually test whether they’ve understood that information they remembered it and they’ve used and weighed it in their decision-making process so I said you’d be paying money called rent you know tell me how much you’d be paying you can tell me why you have to pay it what else you have to pay for bills etc what happens if you don’t pay this is probably my most important slide I keep saying away the word words set the bar and pass mark etc it really is a conversation it’s not an exam you know it’s about sick making the person feel as easy as possible and trying to enhance capacity allowing supporting people to you know make their own decisions there’s no prescribed amount of knowledge as the person has to just demonstrate so it’s a you know balance of probability so judge made by the person that’s assessing the individuals capacity what they need to show is evidence if it’s ever questioned especially you know that this is the information I gave the person these are the questions I asked this is where I set the bar and these are the reasons I say yes they have capacity or the reasons what I say no they lack it a couple of last slides models of decision-making or see if you have capacity you can make your own decision anybody if they have capacity can make an advanced decision you can only to refuse treatment not to demand it the approach used in the states substituted judgment what would I do if I was standing in that person’s shoes some researchers suggest though they took a number of people who would be likely to lose capacity in the future and who would age would chooses their substituted judgment maker and answers only would the same in 75 percent of cases 25 percent of people who were making decisions on behalf of the people was not the decision that the person would have made themselves so the approach in this country in England and Wales is the best interest approach which Toby mentioned now I won’t go for all of these cases I’ll choose one these are lots of the cases that help develop the mental capacity act have included people with learning disabilities the

first one of concentrate on is re why why is a young lady we’ve learned it is high support needs just close contact with her mum and her sister unfortunately her sister as deliverer developed a rare form of leukemia and requires a bone marrow transplant just through previous investigations they know that Y is a match it’s been assessed that Y lacks the capacity to make the decision whether she should donate her bone marrow so some of the things that they considered when making this decision if it went ahead why would continue to enjoy visits from a and sister they’re looking at the relationships there she has a good relationship with both her mom and sister if sister becomes unwell visits from mum would reduce it’s going to affect our social welfare a strong possibility sister would divert out the transplant and we know that she has a good relationship with her sister so that relationship would end sister was more likely to recover with wise bone marrow variates her sister’s best interest is it’s not the issue sister survival is in wise men take best interests so I suppose a point there is you never consider how our best interest decision will impact on somebody else unless it impacts directly back on the person themselves it’s only about what’s in the best interests of that individual and in this case why the operation would be traumatic and uncomfortable but we do know that wise been through two general anesthetics before and she has no greater risk than the rest of the population family could support her through the procedure she could have painkillers following the operation and they said yes that bone marrow could be harvested yet just to say that the Mental Capacity Act when making best interests say you should use a balance sheet approach and should look at it from three different perspectives the medical perspective social welfare an emotional perspective and you should look at the possible disadvantages and advantages from both and then make a decision based on which help balance is they are thank you you