Joint Committee on the Draft Mental Incapacity Bill Minutes of Evidence

5.Supplementary memorandum from the Making Decisions Alliance (MIB 1188)

  The Making Decisions Alliance was asked to submit additional written evidence to the Joint Committee following our oral evidence session. We were asked to respond to specific questions raised by members of the Committee and to answer some of the written questions drawn up by the Joint Committee.


  The Joint Committee specifically asked the MDA whether it favours the best interests approach in the draft Bill or the general principles contained in the Scottish legislation.

  The Scottish legislation has some general principles at the beginning of its Act that set the tone of the legislation and ensures that any intervention brings a benefit to the person and is the least restrictive form of action. The Mental Incapacity Bill also contains some principles, such as the presumption of capacity and the need to ensure that decisions taken on behalf of people who lack capacity are taken in that person's best interests. The Mental Incapacity Bill has additional safeguards around assessment in terms of how people should or should not fall under the powers of this Bill. In particular clause 2(2) states that, "A person is not to be treated as unable to make a decision merely because he makes an unwise decision". The MDA believes that it is essential that the Bill maintains the balance between respecting the right to autonomy (presumption of capacity) and the need to ensure adequate protection for those that can't make decisions (best interests). Currently, the Bill is weighted in favour of the latter. The MDA is concerned that the emphasis on best interests in the Bill as drafted may lead to a misunderstanding that the overriding aim of the Bill is to impose or restrict a person's own ability to make decisions.

  The MDA would favour an approach that would strengthen the existing principles in the Mental Incapacity Bill and clarify more clearly the right for people to make decisions that they are capable of making and for people to be supported to make those decisions. We recommend that the presumption against lack of capacity should be set out in clause 1 of the Bill. The Bill should also be named the Mental Capacity rather than the Mental Incapacity Bill and the clarification of the person's right to make decisions should be set out in the long title to the Bill. Clause 4 (1), which introduces the best interests criteria, should also state "that a decision shall not be taken on behalf of another person unless that person is incapable of making a decision on the matter in question; (b) a person shall not be judged incapable of making any decision unless all practical steps have been taken to assist him without success."

  The MDA believes that that best interests is the right approach and the most appropriate guidance to making decisions on behalf of people who lack capacity. However, we still remain concerned about the term "best interests" as it is publicly identified as the phrase used in courts of law to determine the right of medical practitioners to make decisions on patient treatment. We believe that a new term is needed which does not have the same legal implications as best interests and which clearly distinguishes the right of health professionals to make decisions from the broader scope of decision making in the Mental Incapacity Bill, which would allow for the opinion of professional workers and family carers to be considered where appropriate. The term personal best interests would emphasise that priority should be given to identifying those issues most relevant to the person and to take account of their wishes rather than those of the decision maker.


  The MDA envisaged that the general authority to act would give statutory recognition of ordinary day-to-day decision making by parents and others who have to make decisions for people who are not able to make their own decisions. This would be distinguished from more formal arrangements needed for authorising major decision making about people's health, welfare and financial affairs, with some key decisions being reserved to the courts and other decisions taken out of the system altogether, such as marriage and voting. MDA contends that the scope of the general authority is too wide and does not distinguish between different types of decisions. We regard the significance and timing of the decision as the two key factors that determine whether a decision under the general authority is reasonable.

  The MDA's written submission to the Committee proposes additional safeguards in relation to the general authority to act in relation to medical decision-making and other significant decisions that amount to a material change of circumstances, such as a change of carer.

  We also believe that it is important to consider what is reasonable in the context of decision making under the general authority. The MDA would argue that a health or social care professional acting under a general authority to act reasonably must have regard to their own professional codes of practice, including a person centred plan or care management plan and to be able to justify decisions taken on behalf of a person who lacks capacity. It would be reasonable to expect a professional carer to hold a case conference before making significant decisions. It would also be reasonable to expect a family carer to record why a decision was taken to the extent necessary to justify that the decision was reasonable, if challenged at a later date. For a proposed mechanism on challenges, please see section 5 (Court of Protection).


  The MDA strongly recommends that the Mental Incapacity Bill include provision for advance decision-making. Advance statements (which are statements of wishes) and advance directives (which are advance refusals of treatments) should both be provided for on the face of the Mental Incapacity Bill. It would allow specified treatment to be carried out or continued.

  An advance statement would specify the types of treatment that a person would or would not find acceptable in certain circumstances. They could also include decisions about where they want to be cared for whether in their home or in a specialist residential home. The ability to state their wishes in advance can reduce a person's anxiety about the future, and give people reassurances that their wishes will be taken into account. This would not of course oblige doctors to use treatments they considered inappropriate. We were very much encouraged by the Chairman of the Joint Committee, Lord Carter's reference to the case of Jane Campbell and how an advance statement would have made a big difference in her life.

  The MDA recommends that there should be a mechanism to record the existence of an advance refusal or statement and that there must certainly be an obligation on healthcare providers to ascertain whether an advance statement exists. However, an advance refusal or statement should not be invalid if not registered or lodged, although the benefits of recording the existence of an advance refusal or statement should be made clear to the donor.


  The MDA was asked specifically to comment on the role of advocacy within the Bill and what our priorities should be in terms of funding for advocacy. We believe that a right to an independent advocate will provide critical safeguards in the Bill. Advocacy support will help people to have a say in their own lives and ensure that all practicable steps are undertaken to enable the individual to make decisions. We also think that advocacy will be important in ascertaining what is in the personal best interests of the service user. An advocate would also help to resolve areas of conflict or dispute that may arise between a person and a carer and may be a critical independent check on the general authority to act, particularly for major decisions, such as where someone lives or in considering a particular form of treatment. Its role, as a supporter and facilitator of decision-making, is distinct from that of a solicitor or legal adviser. Without advocacy support, the MDA is concerned that a person may be wrongly or inappropriately assessed as not been able to make a particular decision or not be able to participate in the decision-making process.

  The MDA has recommended that the Government provide funding to ensure that every local authority area has an independent advocacy service to provide support for people affected by the Bill. We have prioritised two areas in terms of funding: First, advocacy is important when major life changing decisions are taken. It will be vital to ensure that the individual's needs are properly addressed and their preferences taken on board. We recommend that there should be a duty on health and social care professionals to involve an advocate when a key life changing decisions need to be taken or when disputes around these situations arise. Secondly, a right to an independent advocate where the individual has no one to consistently support them, for example if they do not have a formal or informal network of support. Where an individual is moved around and between services, the advocate may be the only person they have known for any length of time. In such situations, the advocate will be crucial role, providing both continuity and reassurance to the individual at the centre of the decision making process; and acting as a valuable source of information about that individual's behaviours and communication methods.


  The MDA made a number of recommendations on the role of deputies when we gave evidence to the Committee. In addition, we have concerns as to whether the court of protection will be accessible to people who have difficulty making decisions or have been assessed as lacking capacity. The accessibility of the Court, particularly in relation to single orders, will be particularly important if the Committee accepts the MDA's recommendation that certain decisions should be removed from the remit of the General Authority.

  The MDA believes that when someone is making an application to the Court, or a deputy is being appointed there should be an automatic right for the person making that application to have access to legal advice and to receive legal aid. Resources will also need to be found to secure training for Court judges and other staff on the needs of the various client groups they will come into contact with.

  MDA proposes an additional mechanism for challenging a decision taken under a general authority to act. We would like to see the jurisdiction of the new Court of Protection extended to include arbitration hearings before a district judge (equivalent to "small claims hearings" in the county court). This could help resolve disputes and prevent more formal applications to the Court of Protection. It would also clarify that formal hearings of the Court of Protection are to decide the most difficult cases and to appoint deputies to make difficult decisions.


  The MDA believes that the introduction of new legislation on mental incapacity should precede the Mental Health Bill. This is because Mental Incapacity legislation sets out a legal framework of the rights and safeguards that apply to people who have difficulties making decisions. It also sets how people can make decisions for the future in case they lose capacity, through the appointment of a lasting power of attorney, or advance directives. Since both pieces of legislation are about how decisions can be made on someone else's behalf, it is crucial that they are consistent with each other. The Mental Incapacity Bill sets out the broader framework for decision-making on health and social care matters, and so it must act as the foundation for the Mental Health Bill, which only relates to the provision of compulsory treatment for mental disorder when certain defined circumstances are met. The Making Decisions Alliance would like to see a more "joined-up approach" to the proposed legislation of mental capacity and mental health.

  Furthermore, the objective of the Mental Incapacity Bill is to maximise autonomy and respect and to provide support so that people are able to make their own decisions about their lives. This framework should therefore ensure better support and care and treatment for people with mental health problems and help prevent unnecessary and inappropriate use of the Mental Health Act.

  Finally, there is greater urgency for a Mental Incapacity Bill. This is because it relates to day-to-day decisions, for which there is no existing statutory framework, whereas the Mental Health Bill is for the most difficult of cases and there is already existing legislation to deal with these cases.

October 2003

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