The Mental Capacity Bill was published on 18 June 2004. It is about adults who are unable to make decisions for themselves. Sense works on the Mental Capacity Bill jointly with other organizations as part of the Making Decisions Alliance (MDA), a consortium of organizations representing people who will be affected by the new legislation. This is an overview of the general principles of the Bill as it will apply to congenitally deafblind people with learning disabilities. It also gives some of the key areas in which Sense and the MDA would like to see the Bill improved.
Why is the Bill needed?
- Currently there is no clear legal framework in England and Wales about when and how decisions can be made on behalf of an adult.
- There are no safeguards to prevent abuse.
- There is no right for families or carers to be consulted
The Mental Capacity Bill aims to address this.
Details of the content of the Bill may change as it is amended by parliament. There will also be a Code of Practice, which will give more detail about how the Bill should be interpreted and enforced. This cannot change the law, but it can be used to make clearer what is meant by particular clauses in the Bill. The Code of Practice will be essential in understanding exactly how the Bill will operate in practice.
Who the new Act will apply to:
- People who have never had capacity - learning disability, autism
- People who have lost capacity - dementia, serious head injury
- People with fluctuating capacity - mental health problems
This briefing focuses on how the Bill will affect people who have never had capacity.
Who will have to comply with it?
Everyone who works with or cares for (professionally or informally) people who lack capacity.
Capacity
The Bill will only apply to people who lack capacity, so how capacity is defined is very important.
Definition of capacity:
- A person lacks capacity in relation to a decision if he/she is unable to make a decision because of an impairment of, or a disturbance in, the functioning of mind or brain.
- a person is unable to make a decision for him/herself if -
- s/he is unable to understand the information relevant to the decision,
- s/he is unable to retain the information relevant to the decision
- s/he is unable to use the information relevant to the decision as part of the process of making the decision, or
- s/he is unable to communicate the decision (this includes using sign language or any other means of communication).
Key points about capacity
- Capacity relates to each individual decision. A person does not have capacity or lack capacity in general. They may have capacity to make some decisions but not others.
- Presumption of capacity - everyone is presumed to have capacity to make a particular decision unless they have been shown to lack capacity.
- Maximising decision making capacity - steps must be taken to make sure people have capacity wherever possible - for example by providing support for the person to understand the decision.
- People can make unwise decisions - a person can't be assessed as lacking capacity simply because the decisions they make are considered unwise, or are different from the decisions that the person carrying out the assessment would make.
Best interests
This is only relevant when the person is shown to lack capacity. Anyone making a decision on behalf of someone who lacks capacity must do so in their best interests.
The Bill lists factors which must be taken into account when deciding what is in a person's best interests. These include (this is not the full list):
- the need to permit and encourage him/her to participate as fully as possible
- his/her past and present wishes and feelings
- if it is practicable and appropriate to consult them, carers or any deputy appointed by the court should be asked about their views as to his past and present wishes and feelings.
- If a person has no carer other than a paid carer, then an independent consultee would be appointed to advise on the person's best interests.
This means that for the first time, people making decisions on behalf of someone lacking capacity will have to consult, where appropriate, parents about the best interests of their adult son or daughter.
What is in the person's best interests is not necessarily the same as what is in the best interests of the person making the decision.
Supporting Communication
The MDA does not think that there is enough emphasis on supporting communication in the Bill. We do not want a person to be considered to lack capacity because insufficient time has been taken to understand a person and how they communicate and to provide support. Communication support should also be provided when a person's wishes and feelings are being considered under the best interests clause. It is important that non-verbal methods of communication, such as changes in behaviour should be included within communication, not just people who need sign language interpreting. Amendments covering this will be debated in December 2004.
Acts in connection with care or treatment
The Bill allows a person to do anything in caring for the person lacking capacity if it is in their best interest. The carer must have a reasonable belief that the person lacked capacity and that the act was in the person's best interests. This will apply to family members and paid carers. It will provide a legal context for most day-to-day decisions.
The MDA supports the objective of providing clarity about what action can be taken by informal and professional carers when someone does not have capacity to make the decision themselves, without formal procedures or intervention by the court. However, we do not think that the section on protected acts provides sufficient protection for people who may have difficulty making decisions for themselves and could undermine the enabling ethos of the Bill. The major concern is the lack of guidance in the Bill as to the full scope of the protected act - the two key factors determining whether an act is reasonable should be its significance and the length of time in which it must be undertaken. Certain medical treatment decisions, such as sterilisation should be taken out of scope of the protected act altogether.
Court of Protection
The Bill sets up a new body, the Court of Protection. This court will be able to make decisions and rulings. These might be about:
- Whether a person has or lacks capacity to make a specific decision or type of decision
- Whether something done, or proposed to be done, in relation to a person lacking capacity was or would be lawful
- Deciding where the person should live
- Deciding who the person may have contact with
- Giving or refusing consent to medical examination and/or treatment
- Decisions about a person's property or finances
The court of protection will be for:
- Complex or difficult decisions
- A last resort for disputed decisions
The court must allow a person to make what decisions they can for themselves.
The court of protection will only deal with major decisions. Sense and other organisations think there should be a lower level tribunal which could consider other issues where there is a dispute. We believe this is an essential safeguard to prevent the abuse of the power to do acts in connections with care or treatment.
Court deputies
The court will also be able to appoint deputies, who can make decisions on behalf of the court. This might be, for instance, where a series of decisions need to be made. The deputy would be able to make the decisions without the person's case having to come back to court every time. At all times the deputy would be accountable to the court and could be removed by the court if they were not acting in the person's best interest.
Advocacy
Currently Sense and other organisations are campaigning for people to have an independent advocate when major decisions, such as where they will live, are being made. The Bill contains a requirement for NHS or local authority bodies to consult an "Independent Consultee" (IC) when making decisions about where someone will live or about serious medical treatment. This only applies to people who have no-one providing care other than professional carers. In the course of the committee debate, the Government has clarified that the role of the IC is similar to that of an advocate. The Government has made £6.5 million available to fund independent advocacy.
The MDA wants to see the number of people who have a right to an IC expanded to include those who have family carers. The MDA sees the role of a family carer and the role of an independent consultee/advocate as complementary. Whereas the family carer is likely to know their parent, son or daughter and want to safeguard their best interests, the independent advocate is likely to know how to navigate the system better, including what treatments and services are available and what has worked most successfully for other clients.
What happens next?
- The Bill will be debated in parliament and may be amended
- A Code of Practice will be finalised, which will give more detail about how the Bill should be interpreted.
- There will be a gap before implementation to allow for training everyone likely to be affected, and to set up the Court of Protection.
More information
Click here to see a copy of the Bill the UK parliament's website..
Click here to read more about the briefing and further information on The Making Decisions Alliance website..
