Privacy & dignity

Introduction

Making everyday decisions about our own lives is something most of us take for granted where I'm going what I want to do spending money or just looking after myself. But what happens if there's a time when we find it more difficult to make decisions or if people think we can't make them what happens then? This is what the mental capacity act is all about. The mental capacity act essentially protects my freedom my dignity. Well it's based on five principles. It's about being able to support vulnerable people and their families. It's very protective you have to be given support to make your decisions and the thing I really like is the fact that they allow for the fact that you could make unwise decisions. It's basically about human rights giving all people the right to have a voice to express a preference.

The mental capacity act supports anyone aged sixteen and over. It's made up of five key principles and some groups are adapting the language to suit their own needs. We are making an easy read version of the five rules of the Mental Capacity Act. Capacity means I can make my own decision and understand what it means to me. One two and three is all about me. Start by thinking I can make a decision. Do all you can to help me make the decision. You must not say that I lack capacity just because my decision seems unwise. Four and five you do with me if I lack capacity. Capacity. Use a best interest checklist for me. If I can't make a decision. You must check the decision made does not stop my freedom more than needed.

Assume everyone has capacity. The mental capacity act is there to support us all and the first of the five important principles is to assume everyone has the capacity to make their own decisions. My name is Anital Puri and this is my mum Santosh Anand. Mummy tell them your name. Santosh Anand. Erm, my mom has been recently diagnosed with dementia and I'm her main carer. It's just been a bit of shock being diagnosed with dementia so we're trying to come to terms with that and trying to plan things for the future. Mental capacity act is to assume that everybody has the capacity until it's proven that they don't have the capacity. My mom still makes decisions for herself and we encourage that, that she continues to make her own decisions about herself.

My name is Dorothy Runnicles I've been fortunate enough to be trained as a social worker and as an academic and I've worked, I've had family my own family so I had lots of life experiences along the way to this 91st birthday which is coming up. Very often even as an age group you're judged as not having capacity to deal with or participate or share in decision making which is affecting you and you don't expect to be told that you don't have a view and that your view is not important or to be ignored but that's why capacity through the mental capacity act and its effect on older people is so important because it assumes that you do have capacity. It may vary as you grow older it may vary from day to day and it assumes that you still have a point of view and control of our lives should be retained.

Give the right support and it can happen. The second principle of the mental capacity act is about giving the right support to people to help them make their own decisions. My name is Claire I live on a farm and also I've got a job. The mental capacity act has supported me to catch the bus from home to the bus station and to get to work. At first my mum and dad they were just worried about me because they always like to protect me and take me to places. I said hard hard fire I would like to go and do them myself. Doing a risk assessment in Claire's own words is a good way of supporting someone to make sense of information so that they can make a decision. I've done myself a transport centred plan risk assessment. I designed it and I had a little help and it's all come in my own words. This has helped me make a decision. It's what works good and not-so-good. Spending time to know right bus stop. People I am working with knowing when I arrive. This really helped my mum and dad and also me. It has helped me spread my wings now it's brilliant that I can catch the bus.

And whenever necessary support people to speak for themselves by using advocates or representatives. My name is Larry, Larry Gardiner I'm 63 I was born in nineteen fifty two. I have altered states of consciousness and funny turns. I call them my funny turns. At the moment in the present situation the kind of support that's necessary for me to assert the rights that the mental capacity act gives me and to assert the presumption about my capacity to make a decision often it actually needs an advocate to partner with me to back me up. So if you ask me to make a decision and I just can't make one or if you ask me to make a decision and I don't understand the requirement to make a decision so I don't know that one is necessary then I think you can assume that somebody needs to make a decision in my best interest.

The Mental Capacity Act. Principle three of the mental capacity act is also very important. It states that what might seem like an unwise decision does not necessarily indicate a lack of capacity, an example of this is when people have relationships which some find difficult to support or accept. This is Michael Ratcliffe my husband. And this is Marlene my wife. We've been together nearly 29 years. Marlene do you remember when we first got together? Yes I can. Yeah and they asked us to come into the office because they were worried about our relationship. Yes. Can you remember what they were worried about? They thought I was going to get pregnant. What did you think of it? I think they didn't treat us like adults. But I think people still don't take relationships for people with learning disabilities like us seriously enough. It annoys me. Trying to think of a polite word. It really does annoy me when they do, when people do that. So do you think people understand what the mental capacity act is? No, no, no. It gives you the power to make your own decisions and it also gives you the right to make mistakes. The act actually helps us to make a decision as long as people know what the act is about. It makes a difference does it? Yeah it does.

In the whole of my life I don't think there's ever been a moment when it wasn't possible for me to make a decision. I might have made one that nobody agreed with. I've been given medication against my will and now if a clinician says I think we'd like you to try these medicines and these are our reasons, if I don't agree with them prescribing me this medicine and if I don't want to take it, I'm free not to take it just in the same way that you are. I have the right, I have that right.

Mental Capacity Assessment. At times it might be felt that someone doesn't have the capacity to make a decision. When this happens a mental capacity assessment is done. This involves two key parts. The first is to determine whether the person can make the actual decision at the time. And the second assesses whether if they can't make the decision this is due to something affecting their mental ability through a long-term condition such as dementia or a learning disability or perhaps temporarily such as unconsciousness or drunkeness. In these cases principle four of the mental capacity act states that any decision should always be taken in the best interests of the person.

Best Interests. The best interest decision is a decision that in our situation was made because my mum didn't have capacity and the decision that was being made was about her care, so whether she could stay at home or whether she would need to go into residential care. The best interest meeting is a meeting where it brings all the different parties together who's involved in the care of an individual. Being in a best interest meeting was very useful because obviously for family it's very emotive and we have our reasons and wishes which may be contrary to the individual themselves. So in the case my mum, we know even though she wanted to stay in her own home it was increasingly more difficult to enable that to happen. We feel reassured that the decision has been made in my mum's best interest and it's helped us. It's quite a relief really knowing that she's actually in a care home and she settled into a care home very well.

Challenging Decisions. Principle five of the mental capacity act requires us to look for less restrictive ways of meeting someone's best interests and this could mean challenging decisions taken by professionals. I'm Liz McNichol. I've been mam's carer for the last six year. When it was coming to the end of me looking after mam, mam was wandering, she was just putting her coat on and going out and taking herself for walks and we don't know where she was going. It was really frightening. They diagnosed her with vascular dementia. I'd always promised mam I wouldn't put her in a care home. Mam was always frightened of care homes but when I taken her up to the bungalows, the independent living bungalows, she loved it and she said she could feel herself wanting to live there and being looked after and getting care. The first social worker involved decided that because of her dementia Liz's mum needed a capacity assessment as they felt she might not have the capacity to make the decisions about where she wanted to live.

The process was mam had to have a capacity assessment but the social worker said she failed the test. This led to the social worker advising that Liz's mum should go into a residential care home and not into the independent living bungalows. This wasn't what Liz felt her mum wanted, feeling it was a more restrictive choice and not in her mum's best interests. We had to fight through the courts and it was hard. As soon as we had the right support it was great, the second social worker was brilliant. The end was the judge. She had the best interest decision stating that she could go into the bungalows then. That was great because then we knew things were starting to move forward. The main thing is mam being happy and content, that's all we've ever wanted.

Planning for the Future. The mental capacity act also supports people to think ahead and plan for the future. Older people are quite often fearful of acknowledging that they are having to face incapacities. To older people my first bit of advice was get ready for older age in any way you can now. Don't pretend that you're not going to get old and you're not going to need help, guidance, trusted friends, professionals who really care about what's happening to you.

One way of planning for the future is to set up lasting powers of attorney, often known as an LPA. There are two types of LPA that can safeguard who can take decisions on your behalf. A health and welfare LPA allows someone you trust to take decisions about your health and welfare such as going into a care home or receiving medical treatment. A finance and property LPA allows someone to take decisions about your money and finances on your behalf.

I think it's an opportunity that people should think about seriously if they should lose capacity and be unable to make decisions about their financial situation. Why not now, early on, when everything is completely calm and straightforward, just sort that out. And what an LPA gives you the opportunity to do is to ask people that you trust to have some say over your financial matters.

Having an LPA gives me the confidence that if there comes a time when I no longer have capacity that my financial affairs and properties and so on, everything from depositing a cheque, paying a bill through to, I don't know, selling a house, will be able to be taken forward by the people that that that I have put in charge of my financial affairs and it won't be difficult for them. They'll just be able to take it forward and it won't be a stress. I presume when I if I lost capacity it would be an uncomfortable position for people around me and at least this won't be difficult for them. I think taking out an LPA to some extent is a sort of generous gesture to those around you because it may not affect me directly. By that point I won't really know, I think, if the LPA needs to be used. But I hope it will make things more comfortable for people around me.

Advance Decisions. Taking out an advanced decision about any medical treatment you may not want to receive in the future is another way of protecting yourself over any decisions taken on your behalf. An advanced decision to refuse treatment at the end of your life is a document where you can say what you don't want to happen at the end of your life under different sets of circumstances. You can put all the circumstances you like and you can say yes that's okay or no that's not ok so at least my wishes are laid down even if that means that my life is shortened. I'd rather have a shorter life in a happier and more comfortable state than a longer life, that's my choice.

Well you can do it anytime. I wish I'd done it earlier and it's important to do it while you can because you have to do it while you're of sound mind. I put on my children's details in because it needs to be clear who to contact in the event of things going horribly wrong. It makes it easier for them to make the best choices for me. Under the mental capacity act you have to act in the best interests of the person that no longer has capacity and I will have given them as much guidance as I can as to how I see my best interests so their decisions should be easier and smoother. Once it's done then I think there's a lot of peace of mind that comes from that.

Life can be unpredictable and planning ahead can make taking difficult decisions in the future much easier. Future is scary for us and we are all going to sit down as a family and we're going to talk about Lasting Power of Attorney, any advance decisions, and then I would know once she doesn't have the capacity then I know I'm fulfilling her wishes. I think very few people understand what the whole act is about and how it can have an impact on their day-to-day life and can help them make decisions on a long-term basis as well. That's why I think it's very important before the time it's too late. The mental capacity act is there for everyone, make sure it supports you when you need it.