Care Planning

Mwc care planning consultation 2017

Dundee

Graham Morgan (Mental Welfare Commission for Scotland)

The views of people with lived experience and their friends and family on care planning.

Hello everyone

Alison has asked me to talk about care plans from a personal perspective and also from the perspective of people with mental health problems who we have consulted on the subject over recent months.

I am going to start off with a somewhat odd introduction. As many of you will know I have been treated for mental ill health for around 35 years, in fact I have spent the last ten years on a community based CTO.

I used to be on the care program approach, I am active and engaged in speaking out about how we should be treated in mental health services and promote our involvement in almost everything and yet I have never seen my current care plan.

In fact I don’t even know if I have one and I am not sure I want to see it if I do. I do remember fragments from my care planning meetings and documents that I signed every so often with my last CPN but only just.

So for a detailed explanation and understanding of how people with lived experience can be involved in care planning, take ownership of it even, I suggest that you look at the handouts we have provided that a person with lived experience, has kindly provided for us for this meeting; it is quite a lovely paper she has written, or at least I think so.

However, at the same time I make little apology for daring to speak on a subject which I have already admitted I have only a sketchy knowledge of and of which I appear to have only passing interest.

I will pass on the thoughts of many of the people with lived experience, their friends and family in a moment but first I will mention one of the first things that we found out from our consultation; lots and lots of people with a mental illness have also never seen their care plan, do not know if they have one and appear sometimes not to be particularly interested in them, so maybe my experience is not that unusual.

And I think that is a starting point: if we are to improve our involvement in care planning, in our treatment, in all this stuff : we need to think about why so many of us are not involved; do not even know if we have a care plan, do not participate in their creation.

I would first of all ask you to think why that might be? Is it that you don’t involve people? Or that they are too ill? Or you are too busy to show them the finished plan; I am sure you will have many answers to that, which I can only guess at.

I think there are lots of reasons from our perspective. One basic reason was expressed very neatly to me by a group of carers recently. When you are acutely ill, when the foundations of your life are shattering around you and you are struggling to survive or maybe worse, actively seeking not to survive. When your mind is blurred and you live by a different logic to the people around you, when you are so tired that you struggle to think and so jangly all your legs do when you sit down is jigger away, then, at such times, it can be hard to pay any attention to the things other people think are important.

I know that at the times in my life when I want to burn myself alive in order to turn into a loving spirit, that none of the usual things apply: I am not interested in representation for my section, I am not interested in the help of an advocate and risk assessments, care plans. Goal setting, illness, recovery, medication seem meaningless and pale things that I prefer not to pay attention to.

At such times I can also feel alone, so lonely because no one agrees with my reality, because my right to do what I want to do, to sleep where I want to, to do a whole host of things has been taken away and I can, in my rather passive way, not want anything much to do with the people who are charged with caring for me.

Can, not only distrust my helpers; my nurses and so on, but in some cases actively dislike them, especially when their professionalism makes them keep such a distance from me that I do not see a genuine person accompanying me on my difficult journey but instead an official implementing a policy about safeguarding me but not about recognising me.

When you feel almost as if, not only do all your friends and family not understand you but so do all the professionals charged with your care; that you are the only person with your opinions and feelings and that everyone else rejects them. In this alienation and distance; being asked how you would like to be treated, what you want written about you, what you want out of your hospital stay can feel incongruous, meaningless almost: especially when your aims are the exact opposite of the aims of the people providing care for you.

And so before even a word reaches paper or a conversation starts, comes the idea of involvement. Being asked the blunt words of goals or even interests or contacts can better be prepared for when we have developed a trust in those around us and that does not necessarily mean sitting down with pen and paper; it means getting to know us, or getting to know us even better. It involves time and gentleness and silly things like thinking if we are about to talk of difficult things, things I may not even understand, let us find a room that is pleasant to sit in, let us maybe share some toast and some tea or do some knitting together or play some badminton before we even think of starting with the intricacies of our different perspectives.

It is that reaching out and demonstrating to us that we are cared for and valued and that we will be listened to, showing warmth and respect and even a degree of tenderness or silliness, finding a chance to laugh and to begin the difficult task; first of all, of having a conversation and maybe if we are lucky later on, finding some way in engaging in plans that offer us a hope we may have discarded some time ago.

It is a delicate and sensitive process and with it comes great responsibility, for care planning to work we need to begin the difficult task that surrounds treatment, of allowing ourselves to be vulnerable, to dare to trust you with what you are hoping to do, and if in the brightness of settling to do such things, we find we are let down; that what seem to be promises about a brighter life or one not so bad as this one. If this does not happen and we have given trust to believe it might happen; that if we accept support we may end up somewhere better and we do not, then we are likely to feel more let down than if we had not participated at all.

When we talk about involvement in care plans then we need to start from a position where we build those relationships that mean we want to participate. It sounds simple on paper, all the little things that make a connection, the gestures of partnership and belief and so on which come when any one person attempts to get to know another person - but of course that is usually more difficult than it sounds when we are not ourselves. When I cannot really speak, am lost in another place, when my friends are in such a dark place that they cannot even make the effort to wash or so busy wittering and arguing and walking around that they cannot listen or so anxious that they dart from contradictory idea to contradictory idea then it can be truly hard to build that connection.

However I have experienced it on numerous times and I cannot describe it properly. On one hand I know what it is like to have someone following your every move and know that that person is wishing they were doing anything other than that but equally, I have had people who somehow, often with quietness and a certain warmth make me feel held, make me feel cared for, make me feel like I might just talk to them about what I am going through, might even attempt to try to express what I do and don’t want to happen to me, and I don’t know how they do that. Most of you are, I imagine, professionals, maybe later on, you can tell me how you do it; bridge that apartness.

And lastly in terms of our involvement, some of us have been part of the mental health system for so long, I first got involved with mental health services 35 years ago, I think that is longer than my CPN has been alive. I suppose I have become old and weary, I cannot see how we will ever make me agree to take medication, or that we will really make me genuinely agree I have an illness. I really do not want unrealistic goals put in my care plan that make me fed up with the crassness of some of the expectations some people want of us and equally I don’t really want to have minor steps seen as major achievements; to feel infantalised by that corresponding lack of expectation. And to be honest I rarely want to talk about illness.

I value my CPN so much because we spend so little time talking of illness, keep to ordinary things, allow ourselves laughs and have only quick asides into amount of sleep, or intensity of thoughts or degree of drunkenness that I have had in the last wee while, but mainly we talk of the children, the weekend, with me all the while knowing that there is a bedrock there, a metaphorical holding out of a calming hand for if everything goes wrong again.

And as carers, as friends and family; they also have huge needs, one of the biggest by far is for their expertise to be acknowledged and even if people think that they are not helping us, to acknowledge that they have so much information about what they know does and doesn’t work for us; so many clues as to what we will and will not like and this needs listened to. Listened to properly and respectfully so that as people who have known the person they are close to for so long we will be sure that their expertise is paid attention to. They may not always get it right, indeed sometimes they may be a part of the problem, but they have a stake if you like. And if they are already beating themselves up for what they didn’t do or notice for their loved one, or didn’t manage to achieve for them, then they do not need a stranger to their family reinforcing this, making them feel even worse than before they tried to help. Instead they need them to reach out to them, to value what they may have to say, even when they are not very sure just what it is that they want to say.

There is nearly always emotion when distress occurs, when we are critically ill in this way we may hate friends and family a little, actually we may struggle with any relationship and when family too witness their loved one in the deepest pain imaginable they in turn can suffer deeply. This ever shifting dynamic is not an excuse to freeze Carers out of our lives because of some quick assessment of our family dynamics, some over hasty assumption of blame or mantle of judgement that is maybe used before people have an in depth knowledge of the complexity of the lives and emotions within families that exist wherever we may look and which are often enhanced when we are all suffering.

I have spent most of my time almost arguing against care planning and our involvement in it but I hope that when I talk in this way you also see that I am saying how you approach us when we talk about care planning is also about how you approach us in all of our treatment: do you see us as whole people? Do you see value and worth in us? Do you want to find out about us? Do you want to seek out those that are close to us and involve them and when we cannot participate do you seek the views of those who we trust and live with? It is all this that underpins care planning, makes it vibrant.

I must admit that when I was talking with groups across the country that when we did get onto what should go into a care plan we did seem to have a groundswell of people saying

‘Yes I want a care plan and I want involved in it and not only do I want to have a say, I want it to be mine: a plan that is about me should be my document, I should be able to take it away and share it with those I have in my life if I wish. And I should be able to hold the people who have helped me draw it up to account if it does not seem to be delivering what has been promised.’

We want it reviewed and we want it to feel like a living document, our carers want to be able to use it to know if things are changing for us; getting better, becoming closer to some sort of solution.

I was slightly surprised by how little people mentioned the treatment that should be entered in a care plan, they certainly want the triggers they may face and the times when they are at risk and are no longer safe, made clear with action as to what should be done but the abiding image that I have is that people want you to know what we are like as people, especially what we are like when we are well. What it is that we like and want, what we look like, who our friends are, who and what we want contacted and told about us, what are our hobbies, our work, what we want out of our life, these are the some of the key things that people say.

I think we want a care plan to shine a light on us as people, to make us real to you, so when you see the goals we set and the people we do or do not want informed about our care, you not only understand those bald statements but also have a good feeling about why someone like us would make such statements.

And just as we want a space to say what we like and who we are, many of our closest friends and family would also like a space for them; somewhere where they can have their opinions and experiences and ideas of what would help us recorded. We want to make sure our advance statements are recorded, that how we behave when we struggle is made clear and how we would like to be approached and spoken to.

And as to format, some of us would like, almost two plans: we can see that you may need to know a great deal about our medication and our treatment and our status on the ward or at home but for some of us a short clear concise understandable slip of paper would be good. Some of us are quite clear that when we see densely typed or pages surrounded by formality that it can put us off and that we in turn become formal and turn away from you whilst, if instead, we had a document, whether it be on pink paper or covered in pictures or speech bubbles then that would be ours, that would be closer to our lives and our ways of expressing ourselves and would be something that we might engage with more.

I mainly spoke with people with mental illness and their carers but on occasion people remarked on the care plans people with learning disabilities have or people with dementia have and said we too could learn from this, from the photos and the ‘All about me sections.’ I must admit I do like the idea of learning from each other.

And do I really not want to see my care plan? I am not sure, I have a curiosity; I would like to know what is in my notes, I would love to know what the people supporting me think of me and my life. I suppose that despite being on a CTO, I find great satisfaction in my life at the moment. On occasion I want to run away from that jag and those appointments, on occasion I have sleepless worry filled nights, I still do not understand why I don’t have the courage to kill myself and be true to my reality but overall I have a partner and her children who I adore, I have family and friends I love being with, a job that is fab, occupation, activity, hills to walk in, lochs to sit beside.

In many ways I am content with what I have, more or less trust my helpers and do not really have much motivation to change and maybe that is a lesson for us but I am not sure what that lesson is.

It could be that the constant need for improvement and change and recovery is sometimes badly placed and unrealistic or it could be that some of us get stuck in a way of being, that maybe if I talked in detail about what I want, if I actually took part in creating and shaping the care that is given me, then maybe I would wake up a bit, challenge myself a bit – set off on that road we all travel, a bit more wholeheartedly. I don’t know really but it makes me think.

We will have a proper report of what around 100 people, both people with lived experience and carers have told us they would like to see in care planning ready in a few weeks to go on our intranet and to inform the development of this guidance, if any of you want to see what that says at some point do email me and I will give you a copy of the document.

Thank you.

For more information on the Mental Welfare Commission visit : https://www.mwcscot.org.uk/