Article by Dr Lucy Series on Parent Carers and The Mental Capacity Act 2005

Article explaining the fundamental principles underlying the Mental Capacity Act 2005 and the implications for parent carers.

Tags: Mental Capacity Act 2005, Parent Carers, Fundamental Principles,  Mental Capacity, Children, Best Interests, Deprivation of Liberty, Court of Protection, Confidentiality

Table of Contents

  • The Mental Capacity Act 2005 (MCA) – Introduction
  • The 5 Principles of the Mental Capacity Act 2005
  • What is ‘Mental Capacity’?
  • What is a ‘Best Interests’ Decision?
  • How Does The Mental Capacity Act Work?
  • Who Makes Decisions on Behalf of People Who Lack Capacity?
  • What are ‘Independent Mental Capacity Advocates’?
  • What are Advance Decisions and Advance Statements?
  • The Deprivation of Liberty Safeguards
  • The Mental Capacity Act 2005’s Relationship With The Mental Health Act 1983
  • Family Carers, Relatives and The Mental Capacity Act 2005
  • When Can Family Make Decisions on Behalf of Relatives Who Lack Capacity?
  • The Right to be Consulted
  • Confidentiality Issues
  • Disputes About Capacity and Best Interests
  • Finding Out More

Lucy Series, Cardiff Law School, January 2014

Parents are used to making decisions for their children, and all parents can find it hard to let go and let their loved ones make decisions – including bad decisions – for themselves when they get older.  Parents of children with developmental disabilities such as learning disabilities or autism often continue to make a larger number of decisions on behalf of their sons and daughters than parents of children without disabilities, even as they approach and enter adulthood.  Researchers have found that many parents of people with learning disabilities are concerned that they cannot make decisions for themselves (Bowey and McGlaughlin, 2005; Jingree and Finlay, 2011;Almack et al., 2009).  Yet the legal basis for parents to make decisions on behalf of their sons and daughters undergoes a transition during late childhood and into adulthood.  Whereas during childhood parents have a right to make decisions on behalf of their sons and daughters – because they are their parents and their children are children – by adulthood the legal basis for making decisions on behalf of people with intellectual and cognitive disabilities will depend on their ‘mental capacity’.  Most parents and carers of adults with learning disabilities have not heard of the Mental Capacity Act 2005 (The Select Committee on the Mental Capacity Act 2005, 2013a), yet it is an important legal framework which governs a wide range of issues affecting people with intellectual and cognitive disabilities and mental health problems.

The Mental Capacity Act 2005

The Mental Capacity Act 2005 (MCA) was passed by Parliament after two decades of campaigning by disability organizations.  It is largely based on the recommendations of a law reform body called the Law Commission (1991;1995).  The MCA has a code of practice (Lord Chancellor’s Office, 2007) which offers guidance on the MCA.  Those who provide care or services in a professional or paid capacity are legally obliged to have regard for the code of practice, but it can also offer useful information and guidance for unpaid carers and relatives as well.  The MCA was amended in 2007 to include legal safeguards for people who may lack capacity and who are deprived of their liberty in care homes and hospitals – called the deprivation of liberty safeguards (DoLS).  The DoLS has a separate code of practice (Ministry of Justice, 2008).

Research, regulation and evidence submitted to a House of Lords Select Committee (2013b;2013c) on the Mental Capacity Act 2005 suggests that it is a very popular piece of legislation, but there are some serious problems with implementation and understanding – especially in health services (Williams et al., 2012; Heslop et al., 2013;Clare et al., 2013;Care Quality Commission, 2014).  It is often described as ‘empowering’ or ‘autonomy promoting’.  However, some people think that the MCA does not comply with international disability rights legislation (Bartlett and Sandland, 2013), meanwhile others think that the MCA may give people with learning disabilities too many choices (Monckton, 2013).   The DoLS have come in for considerable criticism from disability organizations (Mental Health Alliance, 2012) and the courts (e.g. C v Blackburn and Darwen Borough Council [2011] EWHC 3321 (COP), but they have also been a valuable safeguard for the human rights of some individuals (Neary, 2012).  It is unsurprising that the MCA can provoke controversy and debate: it deals with some of the most politically, culturally and socially charged issues in our society.  It shapes the relationship between individuals, their families and the state.  It is fraught with disability rights issues and can affect the people and issues that we hold most dear.

The five principles of the Mental Capacity Act 2005

The way the MCA is supposed to work is summed up in its ‘five principles’ which apply to all decisions made under the Act (s1 MCA):

1.       A person must be assumed to have capacity unless it is established that he lacks capacity.

The first principle is called the ‘presumption of capacity’.  That means that a person cannot be treated as lacking ‘mental capacity’ unless steps have been taken to establish that they lack capacity.  Elsewhere the MCA contains reminders that you cannot assume that a person lacks mental capacity just because of their age or appearance, a condition they have or aspects of their behavior which could lead to unjustified assumptions about their capacity (s3(3) MCA).  The meaning of ‘mental capacity’ is discussed in more detail below.

2.       A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success.

The second principle emphasizes that people should be given support to make decisions for themselves.  This principle is reinforced by the UN Convention on the Rights of Persons with Disabilities (‘CRPD’, United Nations, 2006), which says that states should provide support to people to exercise their ‘legal capacity’ (their right to make decisions).  The MCA code of practice offers some guidance on the kinds of support which might be helpful – for example, taking the time to explain things properly to a person, using an appropriate method of communication, ensuring decisions are discussed in a place and at a time that is better for them as far as possible.  Relatives potentially have a lot of useful information about how a person communicates and understands information, which can help to support them in making decisions.

3.       A person is not to be treated as unable to make a decision merely because he makes an unwise decision.

The third principle emphasizes that the MCA is not there to stop people from making ‘unwise’ decisions, or decisions which other people do not like.  It can only be used where a person ‘lacks mental capacity’ in the meaning of the Act, which is discussed below.  Sometimes it can be difficult to distinguish between ‘unwise’ decisions and ‘incapacity’ (Williams et al., 2012).  And sometimes it can be tempting to say that a person lacks capacity in order to protect a person from making a risky choice (CC v KK and STCC [2012] EWHC 2136 (COP)), but people should refrain from doing this as far as possible.  A judge called Sir Mark Hedley (2013) has said that the purpose of the MCA is not ‘to wrap the person concerned in cotton wool and protect them from all the vicissitudes of life.’

4.       An act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests.

The fourth principle says that where a person lacks capacity, decisions must be made in their best interests.  Best interests is discussed more fully below, but it is important to bear in mind that the emphasis is on the person’s best interests, not those of others.  Sometimes, of course, our best interests are intertwined with those of other people – perhaps especially families and loved ones (e.g. Re Y (Mental Patient: Bone Marrow Donation) [1997] Fam. 110; [1997] 2 W.L.R. 556).  But where there is disagreement over what decision should be made on a person’s behalf, ultimately the central question is what is in their best interests not what others want.

5.       Before the act is done, or the decision is made, regard must be had to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person’s rights and freedom of action.

The fifth principle is sometimes called the ‘least restrictive option’.  The MCA says that before a decision is made on a person’s behalf, or an act is done to them using the MCA, people must consider what option would be the least restrictive.  This can mean minimizing the use of restraint, for example.  Or it might mean maximizing the degree to which a person’s own preferences influence a best interests decision.  However, it does not mean that the least restrictive option has to be chosen, if there are good reasons why it cannot be which outweigh this principle.

What is ‘mental capacity’?

Under the MCA, the starting point is the presumption that a person has ‘capacity’.  The MCA takes a ‘decision specific’ approach to mental capacity.  That means that a person might have capacity to make some decisions, but not others, and their capacity to make a particular decision must be assessed on a case by case basis.

A person is said to lack mental capacity if they are unable to make a decision for themselves in relation to a particular matter ‘because of an impairment of, or a disturbance in the functioning of, the mind or brain’ (s2(1)).  This might be a long term ‘impairment’ or ‘disturbance’ such as an intellectual disability or a condition like dementia, or it might be a short term disturbance such as being concussed, or under the influence of alcohol or drugs, or being unconscious whilst having surgery.

The MCA defines a person as unable to make a decision if they are unable:

(a)    to understand the information relevant to the decision,

(b)   to retain that information,

(c)    to use or weigh that information as part of the process of making the decision, or

(d)   to communicate his decision (whether by talking, using sign language or any other means).

The information relevant to the decision does not mean a person has to understand ‘every detail of the issue’ and ‘all peripheral detail’ (LBL v RYJ [2010] EWHC 2664 (Fam)).  It just means they have to be able to understand ‘the reasonably foreseeable consequences’ of deciding one way or another, or not deciding at all (s3(4) MCA).

In addition, the person should be offered assistance to help them to understand the information relevant to the decision, to help them remember it or to weigh up the options, before arriving at a conclusion that they lack capacity.  The code of practice gives some examples of possible assistance.  The courts have tried to improve people’s capacity by ordering that they are given sex education for decisions about sex (D Borough Council v AB [2011] EWHC 101 (COP)), or are given clear information about all the available care options (CC v KK and STCC [2012] EWHC 2136 (COP)).

What is a ‘best interests’ decision?

A best interests decision can only be made on behalf of a person if they are found to lack capacity in relation to the particular matter.  The MCA does not define a person’s ‘best interests’, but it sets out a checklist of things that people making best interests decisions must do and consider (s4 MCA).

Just as people should not jump to conclusions about capacity on the basis of a person’s age, condition or appearance, neither should they make best interests decisions merely on this basis.  Best interests decision makers must consider whether the person might gain, or regain, capacity at some point in the future, and when that might be – so they can consider whether the decision could be deferred so that the person could make it for themselves.  They must ‘so far as reasonably practicable, permit and encourage the person to participate’ in any decisions made on their behalf, or permit and encourage the person to improve their ability to do so.

Best interests decision makers must consider ‘the person’s past and present wishes and feelings’, any ‘beliefs and values that would be likely to influence his decision if he had capacity’ and any other factors that the person would be likely to consider if they were able to do so.  They would do this by talking to the person if possible, or by consulting a written statement the person had made at a time when he had capacity, or by asking others about the person.  In a Supreme Court judgment, Lady Hale said that ‘The purpose of the best interests test is to consider matters from the patient’s point of view’ (Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67, § 45).  However, the person’s own wishes – past or present – will not necessarily prevail, if other factors outweigh these issues.  The test is not what is sometimes known as ‘substituted judgment’, where people try to make the decision the person themselves would have made.

So long as it is ‘practicable and appropriate’, the Act requires best interests decision makers to consult the views of ‘anyone named by the person as someone to be consulted on the matter in question or on matters of that kind’, anyone ‘engaged in caring for the person or interested in his welfare’, or anyone who is a deputy or attorney for the person (these are discussed below).  The decision maker must ask what their views are on the person’s best interests, and what they think the person’s wishes, feelings, values and beliefs might be in relation to the decision.

The Act also says that when making decisions about life-sustaining treatment, decision makers must not ‘be motivated by a desire to bring about [the person’s] death.

Very often the courts are asked to make best interests decisions where there are competing considerations between a person’s safety and their emotional wellbeing.  These cases are particularly common for older people where a decision must be made as to whether they should remain in their own home, where there might be some risks to their health and safety but they are near familiar surroundings and familiar people, or to live in a care home (Re M (Best Interests: Deprivation of Liberty) (Rev 1) [2013] EWHC 3456 (COP)).  The courts have also endorsed the rights of younger people to take risks, saying:

‘The emphasis must be on sensible risk appraisal, not striving to avoid all risk, whatever the price, but instead seeking a proper balance and being willing to tolerate manageable or acceptable risks as the price appropriately to be paid in order to achieve some other good – in particular to achieve the vital good of the elderly or vulnerable person’s happiness. What good is it making someone safer if it merely makes them miserable?’ (Re MM (An Adult) [2007] EWHC 2003 (Fam), § 120)

When best interests decisions involve restraint or a restriction on liberty, the Act imposes additional requirements which must be met (s6 MCA).  The MCA says that a person may only be restrained, or their liberty restricted, if it is a proportionate response to the likelihood of a person suffering harm, and the seriousness of that harm.

How does the Mental Capacity Act work?

Who makes decisions on behalf of people who lack capacity?

The question of who should make decisions on behalf of a person who lacks capacity can be surprisingly difficult to answer.  The MCA has four basic mechanisms for making decisions on behalf of other people:

1)      Lasting Powers of Attorney (LPAs)

2)      The Court of Protection

3)      Deputies appointed by the Court of Protection

4)      The ‘general defence’ for health and welfare decisions (and related provisions for some minor financial transactions)

LPAs are legal documents which allow a person to name an individual (or individuals) to make decisions on their behalf at a point in the future when they might lose capacity (s9-14 MCA).  LPAs can be made for property and affairs matters, or health and welfare matters, or both.  LPAs can only be used when they have been registered with the Office of the Public Guardian (OPG), who supervises the work of the attorneys named in them.  LPAs can only be made by people who have capacity, meaning they cannot always be used by people with developmental disabilities who might never be regarded as having the capacity to make one.  If a person has an LPA for a particular type of decision, then they will be responsible for making that decision on behalf of the person.

The MCA created the Court of Protection to hear cases concerning mental capacity and best interests (s45-61 MCA).  The Court of Protection can make declarations regarding a person’s capacity and best interests, and it can make decisions on behalf of a person by issuing orders (s15-21 MCA).  Sometimes the court hears cases where there are disagreements about a person’s capacity or best interests, but most of its work is making orders regarding a person’s property and affairs.  The Court sometimes makes a single order to authorize a particular act which nobody else has the authority to do on the person’s behalf – such as selling their home, or signing a tenancy agreement.  However, where there are likely to be a succession of decisions to be made on behalf of a person, the Court will often appoint a ‘deputy’ to make decisions on the person’s behalf.  The Court will say what kinds of decisions the deputy is allowed to make, and usually these are limited to property and affairs matters; deputyships for health and welfare matters are extremely rare.

The MCA was deliberately designed to try to keep matters as informal as possible, and ideally out of the courts (Law Commission, 1991;Law Commission, 1995).  To make a decision about a person’s property and financial affairs – other than where a person has an appointee to receive benefits – it is almost always necessary to have a registered LPA, a court order or a court appointed deputy.  However, for health and welfare matters the MCA offers a fourth – ‘informal’- mechanism: the ‘general defence’ (s5-6 MCA).

The ‘general defence’ applies to acts connected with care and treatment.  It says that provided a person providing care or treatment has taken ‘reasonable steps’ to establish that the relevant person lacks capacity, and ‘reasonably believes’ that the person lacks capacity and that it is in their best interests for the act to be done, then they do not incur any liability that they would not have incurred had the person consented.  This is a rather complicated way of saying that provided you follow the capacity assessment and best interests procedure laid down in the act, the law will treat you as if the person had consented to it.

A huge range of people rely on the general defence when they are providing care and treatment for people who lack capacity, from family and friends, to healthcare providers, dentists, local authority social services and even the emergency services such as the police or ambulance.  For family members, this means that if you help a person with their personal care, or even if a person has to be restrained in an emergency, provided the MCA’s principles and mental capacity and best interests procedures are followed, they will be protected by the law.  It also means that when care and treatment is being provided by other people – such as doctors, social workers or care assistants – they are responsible for assessing a person’s capacity and best interests.

Sometimes relatives are surprised to learn this, as people often have a mistaken belief that a person’s ‘next of kin’ can make decisions about their health treatments and care arrangements.  This is incorrect.  The MCA says that unless there is a specific legal authority for making decisions on behalf of a person – from an LPA or from the court – then those providing care and treatment must rely upon the ‘general defence’.  This can sometimes lead to problems where there are differences of opinion between family members and professionals about a person’s capacity and best interests – this issue is discussed in more detail below.

There are a few specific limitations on the general defence.  For certain types of healthcare decisions, medical professionals must seek the approval of the Court of Protection first.  These are set out in the MCA code of practice (paragraphs 8.18–8.24), and they are: withholding or withdrawing artificial nutrition and hydration from a person in a permanent vegetative state; the donation of bone marrow or an organ by the person who lacks capacity; non-therapeutic sterilization; and ‘all other cases where there is a doubt or dispute about whether a particular treatment will be in a person’s best interests.’  In addition, health and care providers cannot rely on the ‘general defence’ for acts which amount to a deprivation of liberty.  For this, they need to seek authorization from the Court of Protection or under the DoLS, discussed below.

What are ‘independent mental capacity advocates’?

When the MCA was going through Parliament, some disability organizations were concerned that the ‘general defence’ gave health and social care providers too much latitude to make major decisions affecting a person’s life without any independent oversight, and they argued for the use of advocates to protect a person’s rights (Joint Committee on the Draft Mental Incapacity Bill, 2002-3).  In response, the government introduced amendments which became the Independent Mental Capacity Advocate (IMCA) scheme (s35-41 MCA).

The MCA and associated regulations set out a series of situations when those making best interests decisions must make a referral to an IMCA for the person, or consider doing so.  These include where a long term placement in a hospital or care home, or serious medical treatment is being proposed, and there is nobody suitable to consult about the person’s best interests.  IMCA referrals might also be made where there is a ‘safeguarding’ investigation regarding a person, or for a care review.  A person and their relatives may have a right to support from an IMCA if they are deprived of their liberty under the DoLS (discussed below).

The role of the IMCA is to find out what support a person might need to participate in a decision which is made about them, and to talk to the person and any other appropriate people about their views and wishes, feelings, values and beliefs.  They must write a report on what they found to help the decision maker, and they can also make complaints or apply to the Court of Protection on behalf of the person if they are concerned about the decision.

Research suggests that IMCAs can make very valuable contributions to a person’s rights and wellbeing (Heslop et al., 2013;Williams et al., 2012;Townsley and Laing, 2011).  However, there is also evidence to suggest that IMCAs may be reluctant to ‘rock the boat’ too hard and formally challenge decisions on their behalf (Care Quality Commission, 2014;Redley et al., 2009).  The Department of Health (2013) has expressed concern about low and patchy referrals for IMCAs by health and social care providers.

What are advance decisions and advance statements?

The MCA allows a person to refuse a particular medical treatment in advance for a time when they might lose capacity (s24-26 MCA), these are often called ‘advance decisions refusing treatment’ or just ‘advance decisions’.  For an advance decision to be valid, the person making it must be over the age of 18 and they must have capacity in relation to the treatment in question at the time they make the advance decision.  They must not have subsequently withdrawn the advance decision or made an LPA which empowers a person to make decisions about that particular treatment, or have ‘done anything else clearly inconsistent with the advance decision remaining his fixed decision’ (s25(2)).  The advance decision must also be ‘applicable to the treatment’, which means it must be carefully worded to say precisely which treatments are being refused, and in what circumstances.  If an advance decision is refusing life-sustaining treatment, then it must be verified by a written statement ‘to the effect that it is to apply to that treatment even if life is at risk’, and it must be signed by the person or in their presence.  The signature must be made or acknowledged in the presence of witness, who must also sign the statement.

The effect of an advance decision is to protect those providing healthcare from liability for not providing the refused treatment, so long as they reasonably believe that the advance decision is both valid and applicable.  If the healthcare provider is satisfied that the advance decision is valid and applicable, and they continue to provide treatment in spite of it, then they might incur liability.

Although advance decisions are very important, they can sometimes prove problematic if it is unclear what treatment or in what circumstances it is applicable to, or if they are unsigned or not witnessed and relates to life sustaining treatment (An NHS Trust v D  [2012] EWHC 885 (COP) & [2012] EWHC 886 (COP)).  An ‘expiry date’ or ‘review date’ may invalidate an advance decision if a person loses capacity after that date (X Primary Care Trust v XB & YB [2012] EWHC 1390 (Fam)).  An advance decision might be treated as invalid if there is an ‘alerting background’ which suggests that a person may have lacked capacity at the time that they made it (Re E (Medical treatment: Anorexia) (Rev 1) [2012] EWHC 1639 (COP)).

In addition to ‘advance decisions’, sometimes people make what are called ‘advance statements’, which set out their preferences for treatments and care for the future.  For example a person might indicate a preference for one treatment over another, or to be cared for in a particular way or in a particular setting.  These can be very important sources of information for a person making a best interests decision, but they are not legally binding on them.  This is because nobody (not even a person with capacity) can require medical professionals to give them a particular treatment – the law limits autonomy in this regard to refusing treatment (R (Burke) v General Medical Council & Ors [2005] EWCA Civ 1003; [2006] QB 273; Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67).  Advance decisions also only relate to medical treatments; it is not possible to make an advance decision refusing a particular kind of care other than medical treatments.

The deprivation of liberty safeguards

The DoLS were introduced in response to a ruling from the European Court of Human Rights which found that the UK had insufficient safeguards to protect the human rights of people who lack capacity and who are deprived of their liberty in hospitals and care services (HL v United Kingdom (App no 45508/990) [2004] 40 EHRR 761).  The DoLS are quite complex, and will not be outlined in full here.

When a person is deprived of their liberty in a hospital or care home, the provider must apply to the local authority (known as the ‘supervisory body’) for authorization.  If a person is deprived of their liberty in another kind of setting – such as a supported living service – then the care provider and commissioners will have to apply directly to the Court of Protection for authorization.  When the local authority receives an application it must conduct various assessments to see if the person qualifies for the DoLS.  These assessments include: assessments of the person’s age (they must be over 18), their mental capacity, their best interests, whether there are any advance decisions or decisions by an attorney or deputy precluding the proposed care or treatment, and assessments looking at the interface between the DoLS and the Mental Health Act 1983 (discussed below).  If the person is found by the local authority to be deprived of their liberty, and all the qualifying requirements are met, then the detention will be authorized under the DoLS.

When a person is deprived of their liberty under the DoLS, they are entitled to certain safeguards.  These include having a ‘representative’ appointed – very often this is a family member or a friend.  They and their representative are entitled to support from an IMCA, who can help to explain their rights to them.  They and their representative can request reviews, if they think that the qualifying requirements are not met (for example, if they think that the person has capacity, or that the detention is not in their best interests).  They and their representative also have rights to non-means tested legal aid to apply to the Court of Protection to challenge the detention.

The DoLS can be horribly complicated, and there are problems with their implementation (Care Quality Commission, 2014).  One of the biggest areas of confusion is just what a ‘deprivation of liberty’ is, and the Supreme Court should soon be handing down a judgment on this matter (the appeal of a case called Cheshire West and Chester Council v P [2011] EWCA Civ 1257).  Often detainees and families struggle to understand and exercise their rights – for this reason it is advisable to ask the local authority for help from an IMCA, who will be able to help people to understand them.  Where there is a serious conflict, cases should go to the Court of Protection, who can come to an independent view on a person’s capacity and best interests (London Borough of Hillingdon v Neary & Anor [2011] EWHC 1377 (COP)).

Relationship with the Mental Health Act 1983

The MCA does not have priority over decisions made under the Mental Health Act 1983 (MHA).  This means that a person can be detained and treated under the MHA even if they have capacity, and without the ‘best interests’ process laid down under the MCA.  Neither can an advance decision or an attorney or deputy refuse most treatments under the MHA.

The MHA also has a complicated relationship with the DoLS.  If a person is subject to guardianship or a Community Treatment Order under the MHA, then the DoLS cannot be used to authorize any deprivation of liberty which conflicts with the regime imposed by the MHA.  If a person is deprived of their liberty in a hospital setting, the authorities will have to make a decision – based on a very complex area of law – about whether a person should be subject to the DoLS or the MHA.  Research suggests that health and social care professionals really struggle to understand these issues (Clare et al., 2013).

Family carers, relatives and the Mental Capacity Act 2005

The MCA can affect family carers and relatives of people who may lack capacity in a number of ways.  Evidence suggests that most family members are unaware of the MCA, even though they might be protected by it at law when they provide care for their relatives (The Select Committee on the Mental Capacity Act 2005, 2013b;2013c).  They may also experience issues around the use of the MCA by other people involved in their relatives’ care and treatment.  And they may also find that they need to seek more formal authority under an LPA or via the Court of Protection to make certain types of decisions.

When can families make decisions on behalf of relatives who lack capacity?

As outlined above, families can make decisions about a person’s everyday care and treatment on the basis of the ‘general defence’.  The MCA also allows them to be reimbursed from the person’s for the purchase of goods and services which are ‘necessary’ – meaning ‘suitable to a person’s condition in life and to his actual requirements’ (s7-8 MCA).  However, the MCA does not provide any authority to access a person’s bank account, to sell their property, to sign contracts or enter into tenancies on the person’s behalf – or any other formal legal actions where they represent a person – without more formal steps being taken.

Where a person has capacity and may lose it, then they can make an LPA appointing a family member to make property and affairs, or health and welfare, decisions, or both.  Where a person lacks capacity and has not made an LPA, families may have to apply to the Court of Protection to make a decision or to appoint them as a deputy.  Information about making LPAs and applying to the Court of Protection can be found on government websites.

Families cannot make decisions about health treatments, or give or refuse consent to care provided by the local authority or NHS bodies, on behalf of a relative, unless they are appointed under an LPA for health and welfare decisions, or are made a deputy for health and welfare.  Health and welfare deputyships are extremely rarely granted, because the MCA says the powers of deputies should be as limited in scope as possible (s16(4)), and it is generally considered that the ‘general defence’ would suffice (Judiciary of England and Wales, 2010;2011).

The ‘right to be consulted’

Evidence suggests that families are sometimes sidelined by health and social care practitioners making care and treatment decisions on behalf of people who ‘lack capacity’ (The Select Committee on the Mental Capacity Act 2005, 2013b;2013c).  Sometimes, disability and carers’ organizations speak of a ‘right to be consulted’ for family and carers (Ambitious about Autism et al., 2012;The Select Committee on the Mental Capacity Act 2005, 2013a).  They are referring to the part of the ‘best interests’ test which requires best interests decision makers – be they family or professionals – to consult the views of ‘anyone engaged in caring for the person or interested in his welfare’ about that person’s best interests, and their past and present wishes, feelings, values and beliefs.

This is an extremely important part of the best interests approach under the MCA, but it is important to remember that this is not a right for relatives as such, but a right for the person themselves.  This is because family and carers are often very important sources of support and knowledge about a person, and play an important part in sustaining their health and wellbeing, as well as their identity.  Ensuring family are consulted is also important if those close to a person are to be able to challenge decisions which they feel are not in their best interests or which violate their rights.

Involving and consulting with family is very important, however the duty to consult them under the MCA is not absolute.  They must be consulted only ‘if it is practicable and appropriate’, and in some circumstances it may not be – for example where there are serious safeguarding concerns and it is felt that consulting with family might actually put the person at risk, or when a decision must be made rapidly before there is time to consult with family.  Moreover, if providers come to the conclusion that the person has capacity, then there is no duty to consult with family, although it might be appropriate to involve family if the person themselves wants them to be.

Confidentiality issues

One of the issues which often comes up for family members of people who lack capacity and who are receiving care or treatment provided by health and social care services, is access to confidential information (2013b;The Select Committee on the Mental Capacity Act 2005, 2013c).  Sometimes relatives might request information or access to a person’s records, and be refused on grounds of ‘confidentiality’.

Where a person has capacity, relatives have no rights under the MCA to know about their confidential care and treatment.  This is because of laws like the Data Protection Act 1998, the common law duty of confidentiality as well as the right to privacy under the Human Rights Act 1998.  When a person has capacity, they can consent to confidential information being disclosed to others.

The MCA code of practice contains an entire chapter (Chapter 16) on the rules governing access to information where a person lacks capacity.  This guidance says that when a person is acting under the authority of an LPA, or as a deputy, then they may access confidential information if they need it to make a decision in the best interests of a person who lacks capacity.  Where family are not acting under an LPA or are not deputies, then they may still request confidential information about a person from the data holder (such as a local authority, or a health or care provider), and they can disclose it to them if they feel it is in the person’s best interests to do so.  The guidance says that sometimes it will be obvious that disclosure is in a person’s best interests – for example if family or carers need to know about a new drug that the person is taking.  Sometimes it might be necessary for to disclose information to family when consulting them about a person’s best interests.  But the guidance reiterates that those disclosing information in a person’s best interests should bear in mind the person’s own wishes and feelings, and only information relevant to the decision in question should be disclosed.

The MCA code of practice notes that financial institutions are often more reluctant to disclose information in a person’s best interests as they are less likely to know the person in question and be able to make an assessment of their capacity and best interests.  The MCA code says ‘It is likely that someone wanting financial information will need to apply to the Court of Protection for access to that information’ (paragraph 16.26).

The guidance says that sometimes disagreements may arise about access to confidential information.  If this cannot be settled through discussion and the appropriate complaints procedure, then the guidance says that ‘the carer can apply to the Court of Protection for the right to access to the specific information’ (paragraph 16.32).

Disputes about capacity and best interests

Sometimes disagreements break out among family members, or between family and professionals, about a person’s capacity and best interests.  The MCA code encourages the informal resolution of these disagreements through discussion wherever possible.  Sometimes, where the dispute is with health and social care providers, independently chaired best interests meetings or family group conferences can be useful (Social Care Institute for Excellence, 2012).  IMCAs may also offer a useful independent perspective (Williams et al., 2012).  Mediation might be advisable, if there is funding for it, but is not always appropriate (Social Care Institute for Excellence, 2012).

But sometimes disagreements simply cannot be resolved through discussion and negotiation.  The MCA advises use of local complaints procedures where possible, however in some cases it will be necessary to apply to the Court of Protection to make a determination about a person’s capacity and best interests.  This is especially important where a person’s right to liberty, or their rights to respect for home, family and private life – including bodily integrity – are concerned.  In an important case (London Borough of Hillingdon v Neary & Anor [2011] EWHC 1377 (COP)), the judge said that in cases of disagreement between family and local authorities:

The ordinary powers of a local authority are limited to investigating, providing support services, and where appropriate referring the matter to the court. If a local authority seeks to regulate, control, compel, restrain, confine or coerce it must, except in an emergency, point to specific statutory authority for what it is doing or else obtain the appropriate sanction of the court: again see Re A and C (above) and the authorities referred to therein.

Even where a person is deprived of their liberty under the DoLS, they have a right to challenge their detention in the Court of Protection – and to be assisted to do so – if they are objecting.  And any relatives who are representatives under the DoLS will be able to exercise that right on their behalf.

One of the difficulties with the MCA is that the Court of Protection is often considered a remote and inaccessible remedy, and it can be financially unaffordable for families to apply for cases to be heard (The Select Committee on the Mental Capacity Act 2005, 2013b;2013c).  In some cases, the person themselves may qualify for legal aid – if they have very limited financial means, savings and capital, and if the matter is connected with their right to family life or serious medical treatment.  This is a matter of some considerable frustration for many people affected by the MCA.

One other remedy available to families and people who may lack capacity – although it is only available retrospectively, after the problem has occurred – is to go to the relevant Ombudsman.  The Local Government Ombudsman and the Parliamentary and Health Services Ombudsman have considered complaints and made findings in a range of matters connected with the MCA.  The Ombudsmen’s services are free, and information about making complaints is available on their websites.

Finding out more

There is a wealth of information about the MCA available online or in books, but sifting through it to find what you need can be challenging.  The best place to start is the MCA and the DoLS codes of practice, as these are authoritative legal guidance and are written in a clear and accessible way.  The Department of Health and the Office of the Public Guardian have also published a number of leaflets aimed at families about the MCA and the DoLS, and these can also be found online.  Public authorities such as GPs, hospitals and local authorities may be able to help people to locate guidance on the MCA.  Where they are available, IMCAs can be useful sources of assistance.  Various major charities – such as Mencap, Mind, Age UK and the Alzheimer’s Society – also have information about the MCA and the DoLS on their websites, and some of these also offer telephone or email advice for people in difficulties.

REFERENCES

Almack, K., Clegg, J. and Murphy, E. (2009) ‘Parental negotiations of the moral terrain of risk in relation to young people with intellectual disabilities’, Journal of Community & Applied Social Psychology, 19(4), 286-298.

Ambitious about Autism, Mencap, Challenging Behaviour Foundation and Irwin Mitchell Solicitors (2012) Best Interest Decisions Tool, London.

Bartlett, P. and Sandland, R. (2013) Mental Health Law: Policy and Practice, 2nd ed., Oxford: Oxford University Press.

Bowey, L. and McGlaughlin, A. (2005) ‘Assessing the barriers to achieving genuine housing choice for adults with a learning disability: The views of family carers and professionals’, British Journal of Social Work, 35(1), 139.

Care Quality Commission (2014) Monitoring the use of the Mental Capacity Act Deprivation of Liberty Safeguards in 2012/13, London.

Clare, I. C. H., Redley, M., Keeling, A., Wagner, A., Wheeler, J., Gunn, M. and Holland, A. J. (2013) Understanding the interface between the Mental Capacity Act’s deprivation of liberty safeguards (MCA-DOLS) and the Mental Health Act (MHA), University of Cambridge.

Department of Health (2013) The Fifth Year of the Independent Mental Capacity Advocacy Service: 2011-12, London:

Heslop, P., Blair, P., Fleming, P., Hoghton, M., Marriott, A. and Russ, L. (2013) Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) Final report, Bristol: Norah Fry Research Centre.

Jingree, T. and Finlay, W. M. L. (2011) ‘‘It’s got so politically correct now’: parents’ talk about empowering individuals with learning disabilities’, Sociology of Health & Illness, 1-17.

Joint Committee on the Draft Mental Incapacity Bill (2002-3) First Report: Volume II: Oral and written evidence.

Judiciary of England and Wales (2010) Court of Protection: 2009 Report.

Judiciary of England and Wales (2011) Court of Protection Report 2010.

Law Commission (1991) Mentally Incapacitated Adults and Decision-Making: An Overview, 119: HMSO.

Law Commission (1995) Mentally Incapacitated Adults, London: HMSO.

Lord Chancellor’s Office (2007) Mental Capacity Act Code of Practice.

Mental Health Alliance (2012) The Mental Health Act 2007: A review of its implementation.

Ministry of Justice (2008) Mental Capacity Act 2005: Deprivation of Liberty Safeguards Code of Practice.

Monckton, R. (2013) ‘Sex abuse… even murder: How human rights are putting the mentally disabled in deadly peril’, Daily Mail, 24 April 2013,

Neary, M. (2012) ‘358 Days’, Mind Legal Newsletter, 12(October), 4-5.

Redley, M., Clare, I. C. H., Luke, L. and Holland, A. J. (2009) ‘Mental Capacity Act (England and Wales) 2005: The Emergent Independent Mental Capacity Advocate (IMCA) Service’, Br J Soc Work, bcp135.

Sir Mark Hedley (2013) ‘An examination of the third principle Mental Capacity Act: The “Right” to make foolish decisions’, in The 14th Mental Health Lawyers Association Annual Conference, Racquet Club in Liverpool, 22 November 2013,

Social Care Institute for Excellence (2012) Safeguarding adults: mediation and family group conferences, London.

The Select Committee on the Mental Capacity Act 2005 (2013a) Evidence Session No. 6. Tuesday 30 July 2013. Witnesses: Moira Fraser, Emily Holzhausen and Oi Mei Li, House of Lords, UK Parliament:

The Select Committee on the Mental Capacity Act 2005 (2013b) Oral and written evidence – Volume 1 (A – K), House of Lords, UK Parliament.

The Select Committee on the Mental Capacity Act 2005 (2013c) Oral and written evidence – Volume 2 (L – W), House of Lords, UK Parliament.

Townsley, R. and Laing, A. (2011) Effective Relationships, Better Outcomes: Mapping the Impact of the Independent Mental Capacity Advocate Service (1st April 2009 to 31st March 2010), London: Social Care Institute for Excellence.

United Nations (2006) Convention on the Rights of Persons with Disabilities speech 2006, 3 May 2008, available: CRPD, New York: 13 December 2006, 30 March 2007.http://www.un.org/disabilities/documents/convention/convention_accessible_pdf.pdf [accessed.

Williams, V., Boyle, G., Jepson, M., Swift, P., Williamson, T. and Heslop, P. (2012) Making Best Interests Decisions: People and Processes.

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Author Information

Dr Lucy Series, Cardiff Law School

E Mail: SeriesL@cf.ac.uk

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