Joint Committee on the Draft Mental Incapacity Bill Written Evidence

82.Memorandum from Carers UK (MIB 771)


  (i)  Carers UK is an organisation of carers, run by carers, for carers. We provide information and advice, carry out research and seek changes from policy makers that will improve carers' lives.

  (ii)  Carers are people who provide care to a relative, partner or friend because they are frail, chronically sick or disabled. The care they provide is unpaid. There are six million carers throughout the UK and their support has been valued at an estimated £57 billion a year.

  (iii)  Carers UK welcomes the publication of the draft Bill and believes that it will help to solve many of the problems faced by carers in providing support to a person lacking capacity to make certain decisions. However, amendments are needed to improve the Bill.

  (iv)  Carers will be affected in three major ways by the Bill. First, the degree to which they are involved in decision-making and their views taken on board if they have significant knowledge about the person lacking capacity. Second, the decisions that professionals make on behalf of the cared for person directly impact on the carers' life and it is vital that their needs are considered. Finally, the legislation could provide a sounder and clearer legal basis on which carers can make decisions.

  (v)  In short, Carers UK recommends the following changes to the Bill:

    —  at present, Clause 4 does not distinguish between a carer and paid professional and it is vital that it does;

    —  there is no hierarchy of decision-making in Clause 4 so equal weight could be given to a full-time carer's views, as they would to a care assistant who visits once a week for half an hour;

    —  a safeguard to ensure that carers' views are taken on board if they are not a Donee or Deputy. This could take the form of a sub-clause to state that they must have regard to the carer's views if a decision is likely to impact on them. This would make the legislation compatible with the Human Rights Act 1998.


  1.1  Carers UK (formerly Carers National Association) is an organisation of carers, run by carers, for carers. We represent the views and interests of the six million carers throughout the UK. Carers UK provides information and advice to carers and we respond to around 20,000 enquiries annually. Through our wider network of Associates, we are in touch with around 300,000 carers.

  1.2  We regularly ask carers about all aspects of caring and encourage them to articulate their needs and experiences to us. Their recommendations and this research inform our policy, on which this response is also founded.

  1.3  Carers UK is a member of the Making Decisions Alliance.


  2.1  We welcome the publication of the Bill for two main reasons. First it begins to address some of the problems that carers face in caring for a relative, partner or friend who, for a period of time, lacks capacity. Second, Carers UK has called for legislation on mental incapacity for some time and it is vital that it is introduced in advance of any new Mental Health Bill as so much of the latter is dependant on establishing capacity.

  2.2  However, there are elements which concern us and that we believe to be neither workable nor practical. We are concerned that lack of clarity and definition will result in poor practice not only for carers, but also for the people they care for. In our response, we have tried to focus on how these issues might be addressed.

  2.3  There are currently six million carers throughout the UK. 1 However, not all these carers will provide support to someone who lacks capacity. The vast majority of carers will be caring for someone with solely a physical disability. However, according to the General Household Survey (GHS), one in four carers (24 per cent) provides support to someone with a "mental disability".2 The GHS does not define mental disability, nor does it look at the level of capacity of the person being cared for.

  2.4  It is likely the majority of carers will welcome more clarity in the law. Is it possible that some carers will view some of the new procedures as burdensome and it is important to ensure that there are not unreasonable or unnecessary demands placed on carers. Our response to the powers of general authority (clause 6) discusses this in more detail. One concern of carers is likely to focus on cost, particularly the costs of applications and resolutions of disputes through the Court of Protection.


  3.1  One of the key objectives of the Bill, as set out in the paragraph 4 of Annex A of the Partial Regulatory Impact Assessment, is to address the problem that many carers face; namely that while they often have the best interests of the person that they care for at heart, they have no clear protection in law for the decisions they take.

  3.2  The other problems that carers experience are difficulties in accessing information, such as medical information because there is no clear legal framework underpinning sharing of information. There are also times when carers are acting in the best interests of the person they care for but disagree with a professional. Our members tell us that often professionals are more readily listened to, than carers. This is true not only of major decisions such as where to live, medical treatment, etc, but also of day-to-day decisions about the way that people are cared for, what they have enjoyed doing, etc.

  3.3  One of our members has cared for her two daughters with severe learning and physical disabilities for over 25 years. The local authority disagreed that the parents were acting in the daughters' best interests, wanted to place them in residential care and went to court to remove them from the parents' care. The local authority's proposal would also have involved moving the daughters with hoists, which they dislike intensely and stopping certain activities which the local authority deemed too difficult—such as swimming once a week. The parents also take them out quite frequently on different activities. The Official Solicitor appointed to advocate on their behalf of the two young women, conducted an independent assessment into the situation. They concluded that the local authority's plan would have been worse for the two women and the Official Solicitor won the case against the local authority.

Definitions in the Bill

  3.4  Another major problem with the Bill's drafting is that it does not distinguish between carers ie those who give support to a chronically sick, disabled or frail partner, relative or friend and those people who provide care as part of their employment or as a volunteer. This is inconsistent with other legislation to date, namely the Carers (Recognition and Services) Act 1995, Carers and Disabled Children Act 2000, Community Care (Delayed Discharges, etc, Act 2003 and draft Mental Health Bill all of which make clear distinctions in primary legislation between the two groups.

  3.5  There are several practical reasons why the Bill needs to distinguish between these two groups. Carers are people who provide the bulk of care to people who are chronically ill or disabled in the community. The care they provide is estimated at £57 billion per year. 3 If they provide substantial amounts of care over a period of time they gain significant knowledge and insight into the condition of the person they care for. Carers want to be seen as partners in care and want to contribute to decision-making about the person they care for.

  3.6  The other important aspect of caring is the impact that decision-making has on the carer's own life. Caring already takes a significant toll on health, well-being and household finances. In one survey, half of the carers providing significant amounts of care had sustained a physical injury since becoming a carer, and half had been treated for a stress-related illness. 4 Carers are statistically more likely to suffer from ill-health than non-carers. 5 Another survey found that 77 per cent of carers providing full-time care had their financial situation affected by caring. 6 The same survey showed that the more care a carer provided and the longer they provided long-term care, the more likely they were be to in receipt of Income Support and have less than £1,000 in savings. The Census estimates that around 200,000 carers currently work full time and care for over 50 hours per week, spending almost every hour outside of work caring. 7 In one Carers UK survey of its members, six out of ten had given up work in order to care and this rose to nearly eight out of ten for those aged 56 to 60. 8

  3.7  Carers are often closely related to the person they care for but it is important to distinguish between a family member who might take an interest in care, but not provide care. Those providing the most substantial amounts of care are most likely to live with the person they care for and be their partner. In other words, they are likely to have more knowledge than paid staff in terms of the person's preferences, likes and dislikes.

  3.8  Carers provide a range of care. This includes physical tasks such as moving, bathing, washing, dressing, shopping, transport and feeding and financial tasks such as managing finances, payment of bills, ordering of equipment, etc. The aspects of care most commonly overlooked are those to do with organisation of care and emotional and psychological care. Organisation of care includes making appointments, arranging and cancelling care, assessments, form filling, discussion with professionals, etc. Emotional and psychological care includes reassurance, encouragement to continue to keep up medication regimes, reminding of events and tasks, regularly checking in with the person to see how they are etc. The organisation of care and emotional aspects of care can be substantial and can be regular in that they are regularly carried out or there is regularity during a period of illness. This level of care distinguishes the carer, whatever relationship they might be to the person being cared for, from an interested family member who may not be providing any care. Carers UK does not represent the latter.

  3.9  Decisions and actions that paid staff make in relation to the mentally incapacitated person directly impact on the carer's life. For example, a decision to change the care assistant's rota frequently for a man with Alzheimer's Disease means that the carer has to teach the care assistant each time how to move, handle, talk to her husband. Her husband finds change stressful and it makes him very anxious and she has to spend more time reassuring him.

  3.10  Carers often tell Carers UK that professionals do not respect their judgement, their knowledge about caring, or the preferences of the person that they care for. For example, when a young woman with severe learning disabilities went into residential respite care for a short period, her mother briefed staff about how to reassure and support her daughter if she became distressed. Her daughter became distressed on several occasions, the staff were unable to reassure her and demanded that the carer come and take her daughter away because she had become "unmanageable". The carer contacted Carers UK to take a complaint because the advice she gave staff had been ignored and her daughter's experiences of respite care were extremely poor. Her break, the first for several years had been cut short and she now feels that she cannot take a break again because her daughter's quality of care was so bad. The carer's own health is now severely at risk because she cannot take a break.

  3.11  Carers often feel that there are big differences in the way that decisions are made. For a professional, they make a decision about the care of a person, but they do not have to live, day-to-day with the consequences of that decision. They may change jobs, move out of the area, retire, etc. Carers' lives, on the other hand, are directly affected by even the smallest decision to change food, dress, etc. because of the way that the person they are caring for will react to it.

  3.12  We do not believe that it was necessarily the intention of the Department to confuse the two groups since the documentation supporting the draft Bill alludes to decision-making made by carers ie family members and friends who provide support unpaid. However, the way that the Bill is drafted would have unforeseen circumstances.

  3.13  It is vital that the Bill separates out these two groups of people in order to ensure that carers needs are not overlooked and that their views are given proper weight in decision-making. This would affect several parts of the Bill.


  4.1  Carers UK welcomes the principle of Clause 4, which already exists in good practice and common law, that anyone acting on behalf of the person lacking capacity must be acting in their best interests.

  4.2  Clause 4(2)(d)(ii) currently states that "any person engaged in caring for him or interested in his welfare" should be consulted where a person does an act or makes a decision on behalf of the person who lacks capacity. Carers UK is concerned that this gives equal decision-making weight to both professionals and to carers.

  4.3  The Clause, in that subsection, also goes on to list Donees, Deputies of the Court and any other person named by the person as someone to be consulted. There is no decision-making hierarchy in this section, which Carers UK would like to see rectified. For example, the drafting of this section gives equal weight to the views of a care assistant who visits twice a week for half an hour to help bathe a person with dementia as it does to the carer who provides support 24 hours a day, seven days a week.

  4.4  In addition, the Bill needs to give consideration to the fact that the impact of decisions made in the best interests of the person without capacity have to be considered in the context of the carers' own human rights under the Human Rights Act 1998. For example, a man with dementia refuses all care and only lets his wife care for him. Even when she does, he can be aggressive towards her. He is awake several times in the night, and walks around the house during the night and his wife has not had a full nights sleep for several years. He is doubly incontinent and has difficulties eating. His wife has cared 24 hours a day, seven days a week for many years and she is exhausted. Her GP has told her that there is nothing he can do to help as her husband refuses help. All other avenues of help explored have met with the same response. As is common to many caring situations, relatives and friends no longer visit because they are frightened of his behaviour and find his disabilities difficult to deal with. They both have had little or no outside social interaction for years. When he falls, he is admitted to A&E and his wife refuses to have him home. Professionals consider it in his best interests to go back home. However, to discharge him back home without support, could contravene his wife's own human rights under Article 8, a right to private and family life. Carers UK believes that the Bill needs to give further consideration to this matter.

  4.5  Carers UK recognises that a Deputy or Donee may be empowered to make decisions on behalf of the person without capacity and that this provides a more secure legal basis than currently exists. Where this person is not the carer, and the carer may choose not to be this person because of the complexity, etc. Carers UK believes the carer must be consulted. The draft Mental Health Bill has set out a similar framework where the carer must also be consulted alongside the Nominated Person—if they are not one and the same person.

  4.6  In conclusion, Carers UK would recommend the following changes to Clause 4:

    —  a separation in definitional terms between a carer and a paid professional;

    —  a hierarchy of decision-making;

    —  a safeguard to ensure that carers' views are taken on board if they are not a Donee or Deputy. For example, the inclusion of a sub-clause to state that they must have regard to the carer's views if a decision is likely to impact on them. This would make the legislation compatible with the Human Rights Act 1998.


  5.1  Carers UK understands the objectives behind the clause on general authority, but also envisages a number of tensions with it. There are likely to be a large number of carers acting day-to-day under general authority. It is vital that the guidance on the Bill, when published, establishes what is reasonable and practicable in terms of consultation to satisfy the conditions of Clause 4. For example, we would consider it neither reasonable nor practicable for the carer to consult a list of people to see what would be in the person's best interests if the carer, who was also the person's wife, wished to change their bath to a shower. However, if a care assistant were to change the regime of the person being cared for, for example, certain new or different foods, we would expect them to consult the carer.

  5.2  Similarly, Carers UK appreciates the practicalities behind allowing people acting under general authority to commit expenditure. However, there are potential tensions. For example, a family on a very tight income, would not welcome a care assistant purchasing a piece of equipment for the person without capacity, without consulting the family, whilst expecting the family to reimburse them for the expenditure.


  6.1  Carers UK is concerned that there is little detail in the Bill about who is responsible for carrying out the capacity assessment of the person and how this is determined. We recognise that it would be inappropriate for primary legislation to set out too much detail. However, we would recommend that the Bill addresses this aspect. This is particularly important to ensure that the person lacking capacity either permanently or temporarily, is given a fair assessment. Carers, equally, need confidence that the assessment will adhere to the same standards.

  6.2  Similarly, the Bill does not set out a framework to demonstrate who has authority to decide what is in the best interests of the person lacking capacity. Whilst the Court will take a final decision over any disputes about best interests, we feel it is vital to ensure that there is clear decision-making before this stage. This is vital not only for professionals but also for any carers and advocates working with and on behalf of people lacking capacity. For example, if the carer disagrees with a professional's view of what is in the person without capacity's best interests, how would they go about challenging this decision? Again, if the carer disagrees with a decision about what is in the person's best interests, where does this dispute start to be resolved?


  7.1  Carers UK believes that it is vital that the two Bills work together and welcomes the fact that the Committee will look at their interaction.

  7.2  Carers UK believes that, although the Bill excludes situations where a person is under the Mental Health Act 1983, there are instances where there would be crossover. For example, someone who makes provision for a Donee to take over their affairs when they lack capacity, and they are subject to a provision under the Mental Health Act, if they lacked capacity, they would, presumably, have already empowered someone to take certain decisions on their behalf.

  7.3  For carers, the interaction of the two Bills will become even more complex if there is no clarity about overlap. For example, a situation could arise where there was a Donee or Deputy, a carer, and a Nominated Person (under the draft Mental Health Bill), all with various levels of decision-making. Under the current Mental Health Act 1983, this would also include the Nearest Relative, who is not necessarily the carer. Carers are usually the only people to liaise between all professionals and they often complain that professionals do not share information nor "talk to each other". This often results in vital information being missed, information having to be repeated and poor care of the person being cared for. Who is then empowered to make decisions which are in the best interests of the person being cared for would become increasingly complex.


  8.1  Carers UK does not have any criticisms of the way that the consultation period was carried out in preceding the publication of the draft Bill.

  8.2  Carers UK has welcomed the fact that the Bill is being published in draft form as it believes that this provides an opportunity to rectify some of the problems with the Bill.


  9.1  In conclusion, therefore, Carers UK welcomes a number of aspects of the Bill, but believes that further work needs to be carried out. In particular, this must ensure that the Bill appropriately distinguishes between carers and paid professionals to ensure the right balance of care and decision-making between the two groups.


  1.   Census 2001, Office of National Statistics, 2003.

  2.  Maher J, Green H, Carers 2000, Office of National Statistics, London 2002.

  3.   Without Us? Calculating the value of carers' support, Carers UK, London, May 2002.

  4.  Henwood, M, Ignored and Invisible, carers' experiences of the NHS, Carers National Association (now Carers UK), 1998.

  5.  Hirst, M, The Health of Informal Carers, a longitudinal analysis, Social Policy Research Unit end of project report, University of York, October 2000.

  6.   Caring on the Breadline, the financial implications of caring, Carers National Association (now Carers UK), 2000.

  7.   Census 2001, op cit.

  8.   Caring on the Breadline, op cit.

August 2003

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