Explaining the Mental Capacity Act 2005 and its relevance for archives and sharing stories

What we will cover today Overview of the Act and its key principles Supporting decision-making Best interests decision-making Reflecting on what it all means for archives

What the Act is about It provides a legal framework for England and Wales that covers decision making for people who may lack capacity It is designed to both empower and protect people It applies to a wide range of decisions, not just decisions about health and social care It applies to the big life decisions (like whether or not to have an operation) or everyday matters (like what to wear)

Who does it apply to? People aged 16 and over An impairment or disturbance in the functioning of the brain or mind the Act applies to people aged 16 and over who have impairment or disturbance in the functioning of the brain or mind. This could include: People with severe or complex learning disabilities People with dementia People who have experienced a stroke People with severe mental health problems People who have sustained a head injury But it could also be someone who has temporarily lost capacity because of alcohol or drugs, or because of an accident. The key point to remember is that the mental capacity act can apply to all of us.

Capacity is… decision specific The Act is clear that capacity is assessed in relation to a specific decision, not a person’s overall capacity.

Capacity is… Variable over time This could be due to someone lacking capacity because they are suffering the effects of drugs or alcohol for example but when they sober up they have regained capacity Alternatively, someone could be very unwell (from a physical or mental disorder) and lack capacity but as they get better, their capacity could return It may even fluctuate throughout the day – some people with dementia may be more alert in the mornings than the afternoons

The 5 Key Principles of the Act 1. Presumption of capacity 2. Supported decision-making must take place 3. A person is permitted to make an unwise decision if they have capacity 4. If a person is judged to be unable to make a decision for themselves (following a capacity assessment), then a decision must be made in their best interests 5. Before a decision is made in someone’s best interest, consideration of the ‘least restrictive option’ is needed. There are 5 key principles that make us the Act.

The Mental Capacity Act is… “…about a way of thinking…(treating) the person as an individual human being, worthy of our respect and our time” Alex Ruck Keene, Barrister

Supporting decision-making Provide accessible information! Involve people! Listen! Support communication! Be creative! But before an assessment of capacity is done, the Act is very clear that every effort must be made to make sure that people are fully supported in the decision-making process. All practicable steps must be taken so that people receive the information they need, in the way they need it This s about assisting decision-making NOT testing knowledge

Assessing capacity Understand information relevant to the decision The law says that in order to show you can make a decision you need to be able to: UNDERSTAND RETAIN WEIGH UP OR USE Understand information relevant to the decision Retain that information (even for a short amount of time) Use or weigh up the information to make a decision Be able to communicate these three things (through talking, signing, or other means) So, in order to bring this to life, we’re going to watch a role play about ‘Vicky’ going on holiday. Hopefully this will help to make clear what’s involved in helping people to make decisions. LIZ: INTRODUCE THE ROLE PLAY BACKGROUND DETAILS…. THEN ROLE PLAY 1 4. COMMUNICATE

Capacity Assessments are… “…an attempt to have a proper conversation with the person…to get to know them, their value systems and beliefs, and to seek to understand their perspective on the decision in question” So, Alex Ruck Keene, when he talks about what capacity assessments look like in practice, describe them as … ‘an attempt to have a proper conversation with the person…to get to know them, their value systems and beliefs, and to seek to understand their perspective on the decision in question’ And I think that’s what we have just seen in this role play. We could see Row talking with Vicky about the options, providing all the relevant information, and giving Vicky lots of opportunities to ask questions and be involved in the conversation. Alex Ruck Keene, Barrister

Best interests decision-making But, there will be occasions when after these conversations have happened, and all steps have been taken to support some to be involved in the decision, then it’s found that someone can’t make that decsions for themselves. In that situation, then a decision can be made in their best interests. Best interests decisions are: still, absolutely, about keeping the individual’s wishes and preferences at the centre of the decision-making process Even when a best interests decision is being made, the Act is clear that the person should still be invited to participate in the process wherever possible. Other people who know the person well should be part of this process. There are really helpful checklists available to help guide people through the process. Introduce Role Play 2 (Amy) This second role play is about someone with high support needs, and whether they should go on holiday. It shows a best –interests decision being made.

Best interests decisions are… “…an attempt to carry those conversations on beyond the dividing line of capacity” Alex Ruck Keene, Barrister

Relevance of the MCA in archives The Act provides a clear framework for decisions about the depositing of materials by people who may lack capacity OR the depositing of materials about people who may lack capacity The MCA makes us think about how we can help people to make decisions about sharing their stories or objects in archives Make point that this legislation should not be seen as scary, it’s a really helpful in providing a step by step approach to good decisions. Archivists should be reassured that this process is in place and will be undertaken before someone comes to them wanting to deposit materials. This is something that you can start embedding this into their own forms and systems, so that they are reassured that the MCA has been followed.

Supporting decision-making in archives We need to think about how people can be given options to try things out, and change their minds. Think about benefits Think about risks Ask me before you decide to leave my story out of history!

Supporting decision-making in archives Take people to archives? Enable people to play with their material online in a safe space? Consider technology that might help people to communicate: like headmouse, touch screens, switches?

Working together on these issues ARCHIVES Accessible information about archives? New ways to engage people? Breaking down the depositing process? RESEARCH TEAM Encourage more people to deposit? Provide guidance or a ‘tool kit’? Help to de-mystify the process? Explore innovative options in our online prototype?

How might ‘Vicky’ be supported to make a decision about sharing her life story in an archive? Before we finish up, here is a brief role play about Vicky (who you saw earlier making a decision about her holiday) beginning to think about whether she wants to deposit her life story in an archive…