Brightening Minds Training

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By brighteningminds, Sep 13 2016 08:36PM

I love food.

People who know me are not remotely surprised by this statement. Food is important to me for so many reasons. I use food to socialise, cooking for friends, meeting friends for dinner. I use food for comfort, when the England rugby team were out of the world cup I commiserated with chocolate. Food can be a reward or motivator for me, I’ll run (well walk fast) if I know it earns me a few extra carbohydrates to refuel, you get the picture. So if someone told me I couldn’t eat anymore due to a risk that I might choke I imagine I would be devastated. What would I do when I saw my friends? What would I turn to when I needed a sweet fix?

This situation can be real life for the people in our care.

Person centred is not a new term in care provision. It’s what we all aspire to achieving; ensuring that people are cared for in the way that they choose, whilst also ensuring their needs are met. But what makes the difference between an ideology and actually delivering person centred care and delivering it well?

While we are self-caring and independent we are at the centre of our own lives. We make decisions, some of those decisions might be unwise, (that last Bacardi was the last thing I needed on Saturday evening, but oh how I wanted it!) but the beauty of being human and of consenting age is our right to choose. Obviously not every decision is made purely around us, we have families and friends and we often make decisions based on our responsibilities to them rather than purely what we would like to do. Ultimately though we are masters of our own destiny, and as daunting as that can be sometimes imagine how life would be if we didn’t have that freedom.

How would it feel if your body wouldn’t do the things you wanted it to and that restricted the choices you could make? Or if you were reliant on someone else to support you with everything you did. Imagine if you could make choices but struggled to communicate them to other people. What would it be like if people who didn’t know you were making decisions on your behalf?

So how do we ensure that the care we deliver really does put the person at the centre, and what are the challenges to achieving this? Reflecting on my experience of working with people to develop care and support that is truly person centred leads me to sharing a few of my thoughts, although I can guarantee I don’t have all the answers.

Communication is key.

Finding out what makes a person them is key in delivering person centred care and for that good communication is essential. It is also one of the most difficult things to get right. We already know that there are many views around verbal and non-verbal communication and I’m not looking to challenge them or to present an alternative. How someone communicates will be individual to them; it may involve verbal communication and observations of body language, or you may employ communication boards, symbols or signs. The important thing for us is that we learn to understand the way someone communicates and use this understanding to create a conversation.

Good communicators will use their ears and mouth in the correct proportion and will have a variety of questioning techniques ready to keep the communication channels open. They will be gently inquisitive rather than interrogating and keep their opinions out of this conversation. This is not to say this conversation isn’t two way, it can be really helpful to give a little of yourself in order to receive something back but it’s important to consider what it is that you are giving. Let’s not start a debate when we are trying to encourage people to open up to us about the most important details of their lives!

Finding the appropriate pace of the conversation is crucial. I used to be frightened of pauses and silences; in my own company I often talk to myself just to break the silence, so to be with someone and there to be no talking was terrifying! But I was taught and now do believe that silences allow thinking time, and that might be just what it is. Check in if you need to, ask if your question was clear, but just hang fire a minute or two and give the question chance to land and an answer time to formulate. Good questions provoke thoughtful responses.

What is right for you is not right for everyone!

Seems obvious perhaps as we are discussing person centred approaches, but when we challenge ourselves to think about it there is a real risk that we will make decisions and offer support based on what we think is best for someone in our care, rather than what is right for them. Life experience programs us with our own set of values and approaches to everything that we do. We form our opinions from a combination of what has been instilled in our upbringing, our lived experiences, from what we have tried, what works for us and what hasn’t worked for us in the past. However our well intentioned approaches can sometimes be no more than that; well-intentioned but not hitting the mark for the person they are intended for.

I have a friend who has support for a couple of hours a week with making appointments, managing emails and letters, and ensuring finances are running smoothly. For the purposes of this example let’s call him John. He is independent with all other areas of his life but he finds these specific areas challenging and needs direction and focus to undertake them. John had employed a new support worker, Bill through an agency to help him with these specific tasks and we were talking about how it was going. Well it wasn’t working out he explained as Bill had been told that his role was to advocate choice; there appeared to be a mismatch in what this meant to Bill and what it meant to John. When Bill arrived they would discuss the plan for the next couple of hours and as they commenced each task he would ask things like ‘what would you like to do about this letter?’ and ‘what should I do with this appointment?’ John said that if he could answer all of those questions then he wouldn’t need assistance!

So whilst Bill was working really hard to ensure that John was in the driving seat and that his role was enabling rather than leading, John had already made a choice that what he wanted and needed in a support worker was someone who would say ‘you have these bills to pay, and these appointments to make’ and then support him to do that. Giving him all of these different options was actually creating anxiety for John, albeit unintentionally. Of course I can see where Bill was coming from. This approach of telling someone what they need to do often conflicts us with what we expect the support role to be but that is what a person centred approach embraces. It’s what ‘right for me’ actually means to that person, not what we interpret it to mean.

Important to and important for are not the same.

A fabulous yet simple tool I have used time and again is something I first found from Helen Sanderson Associates and it’s a simple list template with ‘important to’ in one column and ‘important for’ in another. The things that are important to a person are often not the same as what is important for them and their safety but in order to create a plan of care that really meets someone’s needs exploration and cohesion of both areas is essential.

Often what is important to someone sits alongside what is important for them, however on occasion there may be conflict and it might be necessary to draw on other skills and support such as risk management and the expertise of other professionals. Let’s return to my opening story to consider what that might look like.

In this example I talked about how important food is to me, and how challenging it would be if I was to be told I could no longer eat due to a risk that I would choke. Using this example it is important for my safety to have my nutritional needs met and reduce the risk of choking. Clearly in this scenario we have a conflict.

So what can someone supporting me do in this situation? Well hopefully they will communicate with me rather than dictate to me, they will present me with the options and the risks, allow me to consider them and make a decision. Perhaps with the input from other health professionals we will come to a creative compromise where I can still engage in trying small amounts of food whilst undertaking all of the experiences that I associate with food because that is the decision I am able to make, or perhaps I’ll tell you thanks for your advice but it’s a risk I’m willing to take.

If my ability to understand the risks is impaired hopefully I will have some support with this decision, taking into account my previous wishes and my love of food and all it means to me, balancing that with the risks of eating even small amounts of food. Then together we will create a plan for what happens next. Together; with me at the centre. This plan won’t be set in stone, it will be something we can try and something we can review but it’ll be built around me and based on consideration of what is important to me as well as what is important for me.

That will be person centred care. It is hard work to get it right, there is so much to take into consideration, and it extends beyond just my crude example but please remember that I know me, so to know how to care for me…well I’m the best person to ask.

By brighteningminds, Sep 13 2016 07:35PM

I’ve started running. (I’ll allow a moment for the laughter to subside…)

I’ve got to 3 weeks (8 runs) in and my left knee has stopped participating. Every time I move it it shouts at me, and it has no further plans to participate until I develop some supportive muscles around it.

In truth the pain started at the end of week 2 when I was 6 runs in. My mum said ‘Stop running Clare, look after that knee. Don’t put too much pressure on it.’ I thought to myself ‘I’m 30-bloody-6, I’ll run if I want to.’

Should I have listened to my mother? Perhaps…

Why didn’t I? Because I’m stubborn, because I’m 36 and because I didn’t have to! I have no medical conditions that affect my understanding. I can retain, use and weigh information given to me and I can make my own decisions based on this information. I have the capacity to make decisions about my life. Thank goodness for that!

A few recent events have made me think about how we view capacity, what we understand it to mean, and how difficult it can be sometimes to allow people to make their own decisions when we feel that we know best!

Recently someone I know was admitted to hospital following what some would say was a series of unwise decisions. At the point of admission he was acutely unwell, but as memory tests and questioning demonstrated he nonetheless had good understanding of the reasons for admission, the care required to aid recovery, and could consent to the care offered by the medical team.

Over the next few days my friend’s family and close friends came to visit, all very concerned and all with their own opinions on his situation and events leading up to his admission.

I find it incredible how rapidly situations can change when someone needs some care. From being at home making day to day decisions to being in a care setting with someone deciding what is best for you can happen extremely quickly. One day I was talking to my friend, asking what the plan was for his hospital admission. He didn’t know further than the next intervention. Talking further it appears that this wasn’t due to the lack of a plan, but because the Doctors had been consulting with his family rather than with him. He was only hearing the parts they chose to discuss with him. Additionally, when an intervention was required while visitors were present, the hospital staff would explain what they needed to do and why regardless of who was present at the bedside.

‘Why didn’t he challenge them?’ you might be thinking. Well he felt too exhausted to start challenging people; it was enough to get through each day and to try and recover without arguing about who should be privy to what information and who should be making what decision. He wasn’t happy about what was happening but as he explained it was one of those ‘choose your battles’ moments.

Of course there’s nothing to say that his family were making decisions that he wouldn’t have agreed with or made himself; they felt that they were acting in his best interests and doing what was right by him. The point is that if you are capable of making a decision about your life, treatment or future then you are entitled to make it. Just as my mum gave me an opinion and I chose to ignore it, my friend should have been given the full information about his condition and allowed to choose the plan for his treatment.

What is it that makes us think it is ok to make decisions for another person then? As parents it’s always going to be a challenge not to jump in and offer an opinion or make a decision on your child’s behalf no matter their age; after all you did have a legal responsibility to do that for the first 16 years of their life and old habits die hard! This is an important point for health professionals to consider when approaching consent and capacity. Our parents want the best for us, but their best is not necessarily our best, and we don’t always make the same decisions that our parents would make for us. Therefore health professionals must be absolutely clear that they have our consent to disclose information to our nearest and dearest. If there is a question around capacity to give consent a full capacity assessment must be undertaken and the principles of the Mental Capacity Act (2005) adhered to.

Hearing about my friend’s experience of being a patient and his feelings of disempowerment around the plan for his treatment made me concerned for people who have difficulty with independent decision making in certain areas. We make hundreds of decisions every day, from what to have for breakfast or how to spend the evening, through to larger decisions like where we want to live or which job to apply for. Not having the capacity to make some of the larger decisions does not automatically mean an inability to make any decisions. Thinking about the impact for my friend, if he is not party to the discussions around his treatment then isn’t there a risk that he will be removed from his own recovery?

I urge you to think about some of the decisions you make each day and about how it has made you feel when someone offered an opinion on one of your decisions that you perhaps didn’t want to hear. Imagine how it would feel if their opinion became your reality. Now think of how wonderful it is to be human, to be an independent thinker, to have the right to make your own decisions; and where you can make every effort humanly possible to support other people in exercising their right to make their own decisions.

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