This booklet is intended for use by anyone who helps to care for an adult who has impaired Mental incapacity because of brain injury, dementia, learning difficulty, mental health problems or any other illness or disability.
You could be a partner, a relative or a friend of the person, and the care you provide is unpaid.
The person you care for may find it hard to make decisions about money, health and other matters. They may need help to make those decisions, or actions may have to be taken for them. There are special procedures in place for making decisions about financial and health issues.
This booklet explains:
what the law says about Mental incapacity
how decisions should be made on financial, health and other matters
the role of doctors, lawyers and other professionals
where you can go for expert help and advice
This booklet does not deal with the assessment and compulsory treatment of patients for mental disorder under the Mental Health Act 1983.
The law says that people are able to make their own decisions ('have Mental incapacity') unless it is proved that they do not. This means that they have the right to make their own decisions about health, legal, financial, and other matters.
In many cases 'capacity' means being able to understand and retain the relevant information and weigh it in the balance to make a choice.
Very few people are totally unable to make any decisions - even those with severe disabilities and high support needs. However some activities or decisions may demand more capacity than others. An older person with dementia for example, may be quite capable of collecting and spending their weekly pension, but may be unable to deal with more complex financial matters, like investments or selling a property.
How do I know if someone has capacity?
Each time the person you care for needs to make a decision or wants to do something, you need to assess whether the person is able to make a choice.
Some people's Mental incapacity may get worse over a long period of time, for example people with dementia, so the point at which they are no longer able to understand or make a particular decision is hard to pinpoint. For others, (such as individuals with mental health problems) they may experience only temporary periods when they lack capacity.
For more serious or complicated decisions, it may be necessary for a doctor or other professional to give a more formal assessment of the person's capacity. If you are unsure about the capacity of the person you care for, you can ask someone else to make an assessment.
Who can assess Mental incapacity?
There are different tests for assessing someone's Mental incapacity. For example, a solicitor helping someone to make a will, needs to be satisfied that the person has the capacity to understand what the matter is about before he or she signs any documents. If necessary, the solicitor will get an opinion from a doctor or a psychiatrist.
Where consent is needed for medical treatment or an examination, the doctor, nurse or other healthcare professional concerned will need to decide whether the patient has the capacity to consent to or refuse treatment.
The person's family doctor should be able to give an opinion on his or her general condition and on their capacity to make particular decisions. If the doctor is unable to make the assessment for any reason, they will be able to advise on who is best placed to do so.
Advice agencies or voluntary organisations may have relevant information or may be able to suggest sources of expert help or advice. For example, the Alzheimer's Society can advise on how to help someone with Alzheimer's Disease. For a list of these organisations
How can I help in assessing capacity?
As a carer or close relative, you are likely to know the person you care for very well, to know their likes and dislikes, and be able to tell doctors and other healthcare professionals what these are.
You are likely to know the best ways of communicating with them and be able to explain these to others involved in helping the person to make a decision or in assessing the person's capacity.
Helping people decide for themselves
Some people may need help or support to be able make a decision or to be able to communicate their wishes. There are voluntary organisations and other services available that may be able to help. For example, an advocate (independent of the family or other agencies involved) may be able to help the person to make their wishes known or to make a choice. Some organisations have produced publications, tapes and other materials. They are:
Motor Neurone Disease Association
What can I do for someone who lacks capacity?
Even with help and support, some people lack capacity to make certain decisions and actions may need to be taken for them.
Generally the law will allow you to do things that are necessary for the well being of a person who lacks capacity, such as, buying their shopping or paying their bills. This is called the 'doctrine of necessity'.
There are special rules for financial and healthcare decisions. The person may have made arrangements about some decisions in advance.
In all cases, you should act in the 'best interests' of the person who lacks capacity.
What are 'best interests'?
'Best interests' means that the person's known wishes and beliefs and their general wellbeing must be taken into account.
In relation to medical treatment, the courts have said that the person's
Case Study
Julia is in her mid forties and lives in a bungalow within an NHS Trust. She has lived within a hospital since she was a child. Julia doesn't use words but she has a lovely smile. Her mother describes her as a 'people person' who loves to have activity going on around her. Julia's parents are now thinking about Julia's future. Her parents have taken the first step of inviting an advocate from a local independent advocacy agency. It's important to try and find out where and how Julia would like to live in the future and the first stage is to discover 'who' she is and what she likes and dislikes. Her advocate is helping her with this.
What financial decisions can I make for someone?
You may often have to use a person's money on their behalf even though you don't have specific legal authority, for example buying food or paying their heating bills. If you do this for the person's benefit and you are acting in their best interests, this is permitted by the doctrine of necessity. But this does not give you the right to take control of the person's property.
Generally, on more important issues, (such as investments and property matters),you can only make financial decisions on a person's behalf if you have been given specific legal authority to do so, for example if you have been appointed as their attorney.
How is legal authority to manage financial decisions given?
Anyone can make advance arrangements to allow financial decisions to be made on their behalf in case, at a later date, they lose their own capacity to make such decisions.
For example, they can:
arrange for a trusted relative or friend to be a signatory to their bank or building society account, to enable that person to draw out money or pay bills;
put some money into a joint account, again with a trusted relative or friend; or
arrange for an 'agent' to collect social security benefits and if authorised, to use the money on their behalf. This is usually where the person has a physical disability and finds it difficult to get out to the Post Office or shops.
For all of the arrangements the person making them must give their consent in writing, choose whom they wish to authorise,and state how much authority they want to give them. This authorisation must be given while the person concerned has Mental capacity.
However, some of these arrangements stop being legally valid once the person making them has lost capacity to manage their own affairs. You should notify the Department of Work and Pensions if you are acting as agent and check whether the other arrangements remain valid with the person's bank, building society or a solicitor.
If you are responsible for dealing with the financial affairs of the person you care for (whether as agent, appointee, attorney or receiver) the following hints may help you to demonstrate that you are acting properly:
Keep careful records - including up-to-date accounts with details of income received, what you have spent money on, bills you have paid and any other financial transactions you have carried out.
Keep the person's money separate from your own;
Spend the money for the person's benefit, not to benefit anyone else
When dealing with savings, investments or property make sure you have the proper authority, either under an Enduring Power of Attorney or from the Court of Protection.
If you are in any doubt, or if the person's finances are at all complicated, you may wish to seek independent financial advice.
They can also make an Enduring Power of Attorney.
What is an Enduring Power of Attorney?
This is a form of deed that allows someone (called the "donor"), while they have capacity, to appoint another person or persons of their choice (called the "attorney(s)") to manage their financial affairs and property. Forms are available from:
the Customer Advice Unit at the Public Guardianship Office (PGO)
stationers who sell legal forms; or
solicitors or other advisers
The attorney can be a friend, relative or a professional and the donor can choose for the attorney(s) to:
either take over the financial affairs at once while the donor still has capacity. The attorney(s) can then continue to act after the donor becomes mentally incapable as long as the power is registered with the Public Guardianship Office; or
take over the financial affairs only when the donor is no longer mentally capable of managing his or her own financial affairs.
EPAs are awarded by a special court called the Court of Protection. They can be general (covering all the donor's property and affairs) or the donor can set limits on what the attorney can do. The attorney must keep an account of the donor's money and property and, after registration, the Court may ask for these accounts to be sent to them.
You can get more information and advice about EPAs and the duties of an attorney from the Public Guardianship Office.
What if arrangements for financial decisions have not been made in advance?
If the person you care for has no means of support other than social security benefits and pensions, the Department for Work and Pensions (DWP) can appoint someone called an 'appointee' to take over the person's claim for benefits. The appointee can make a claim, receive the payments and spend the money on the person's needs. The DWP can appoint a suitable person involved in the person's care, but will usually give preference to an agent nominated by the person before they lost capacity. If you care for someone who needs you to be their appointee, contact the office that deals with their payments. They will arrange to visit you and the person you want to help.
If the person you care for does have property or assets other than social security benefits an application must be made to the Court of Protection to appoint someone to manage their finances.
What can the Court of Protection do?
The Court of Protection is a public body that protects and manages the property and financial affairs of people with impaired Mental incapacity. It will need medical evidence that the person you care for is 'incapable, by reason of mental disorder, of managing their property and affairs' and also details of the person's property and assets.
The Court may make an order, called a 'short order' authorising someone to do whatever needs to be done to deal with the person's money. This is usually when the value of everything the person owns is limited and there is no property to be sold.
If the person has more assets, such as property or stocks and shares, the Court can appoint a 'receiver'. This can be either a family member or a professional person, such as a solicitor or accountant, or the Director of Social Services. If there is no one willing or able to act as receiver, the Court can appoint a receiver from an approved panel. You can get more information about these applications and the duties of a receiver from the Public Guardianship Office.
If the person you care for needs medical treatment, only he or she can consent to that treatment.
No one - not even husbands or wives, partners, close relatives, professional carers or independent advocates - can legally give or withhold consent to medical treatment on behalf of another adult.
However, the attorney or receiver often needs to be involved in, or consulted about these decisions and what would be in the person's best interests.
Can healthcare treatment be given without consent?
Doctors, nurses and other healthcare professionals can and should provide treatment without consent for people who lack capacity to consent, if they consider it to be clinically necessary and in the best interests of the person.
They should always consult people close to the person to agree the best course of action or treatment, unless the person has made clear in the past that they would not want a particular individual involved.
You should never be asked to sign a consent form on behalf of the person you care for, but you may be asked to sign a form to say that you have been consulted about the person's best interests.
Case Study
Mr B has severe dementia. He is suffering from a cataract and his doctor has suggested that he should have an operation to remove it. Mr B is no longer able to remember facts for more than a few seconds, often asking the same questions over and over again. His wife and his son, as well as his doctor, have tried to explain very simply to him what the operation will involve, but it is clear that he has not understood, and is not able to use the information to make a decision. He therefore lacks capacity to consent or refuse offered treatment, and so a decision has to be made on the basis of his 'best interests'.
The doctor discusses the options with Mrs B and her son and with a carer from the respite care home. In the past Mr B had several operations and had had no hesitation about consenting to anaesthetic or sedation. He also still enjoys watching a lot of sport on television, and his cataract is significantly affecting his ability to do this. However he does get very distressed if he wakes up in an unfamiliar environment, and Mrs B is concerned that he will find the whole experience deeply distressing, especially if it involves a hospital stay. The family, doctor and care worker all agrees that a cataract operation will significantly improve Mr B's quality of life and that if possible it should go ahead. It is agreed that Mr B should have the operation as day surgery, with Mrs B able to be with him the whole time to provide reassurance.
Can arrangements about health care be made in advance?
Yes. While he or she still has Mental incapacity, a person can state their wishes about the forms of medical treatment that they would or would not be prepared to consent to if they should subsequently lose capacity to decide for themselves. This is called an 'advance statement', 'advance directive' or 'living will'.
What can advance statements include?
There are various types of advance statement:
a requesting statement giving someone's individual wishes and preferences
This can help healthcare professionals identify how a person would like to be treated without binding them to that course of action if it conflicts with their professional judgement
a statement of general beliefs and aspects of life which someone values
a statement naming someone who should be consulted at the time a decision needs to be made
a clear instruction refusing some or all medical treatments. This is known as an advance directive.
a statement requesting certain types of treatment that someone would want to receive in certain circumstances; or
a statement setting out a degree of irreversible deterioration after which no life sustaining treatment should be given.
Advance statements can be a combination of some or all of the above.
Advance statements cannot
require a doctor to do anything which is not lawful, including action taken with the purpose of ending the patient's life.
Are advance statements legally binding?
Only in certain circumstances. An advance directives refusing treatment, is legally binding, even if carers and relatives or healthcare professionals disagree with it, as long as:
the refusal was made while the person still had Mental incapacity and he or she understood the implications of their decision;
it is clear and applicable in the particular circumstances in which treatment is proposed; and
it was made without undue pressure from other people and there is no reason to believe that the person has changed their mind.
However, these only apply, where the person has lost capacity: a competent and up-to-date decision always overrides an advance directive.
Requesting statements and general statements of preference should be respected and taken into account by healthcare professionals, if appropriate, but they are not legally binding.
What if financial or healthcare arrangements have been made in advance?
Try to find out whether the person you care for has made plans in advance, setting out what they would want to happen if they become incapable of making their own decisions. They may have already discussed these plans with you or other people close to them while they still had capacity.
If he or she has made an advance statement, you should tell the doctor, nurse of other health care professionals involved and give a copy of any signed document to them.
If he or she has made any financial arrangements, you should check whether these arrangements continue to be valid.
What if there is a disagreement about someone's capacity or best interests?
It is usually possible for health care or other professionals and those close to the person to agree on whether someone has capacity to make a particular decision or what would be in the person's best interests. However, iIf this proves impossible for whatever reason, you or they can ask the High Court to decide what is in the person's best interests.
For example, the Court can be asked to decide about healthcare, such as whether the person should have certain types of irreversible medical treatment. The Court can also be asked to decide about the person's personal welfare, such as where they should live or whether they should have contact with other family members.
If it seems that court procedures may be necessary, you should seek advice from a solicitor.
What happens if someone recovers capacity?
A person who has previously lost capacity to make their own decisions can sometimes recover sufficiently to manage their own affairs again. If no formal arrangements have been made to delegate decisions to someone else, the person can simply start making their own decisions again.
If the person has made an advance statement about medical treatment, and wishes to change their mind, they can simply destroy the written document and inform everyone who knew about it that it is no longer valid. While the person still has capacity, they can make a new statement at any time.
If the person you care for has made an Enduring Power of Attorney, or has appointed someone to manage his or her affairs, an application must be made to the Court of Protection for an order to 'revoke' the EPA or to remove the receivership. The Court will need medical evidence that the person now has capacity to manage his or her own affairs. Once the Court is satisfied that the person has recovered, other organisations dealing with the person's money or property (for example, banks and solicitors) will need to told.
If the Department for Work and Pensions has appointed an appointee, the person you care for will need to tell the DWP of their recovery and make a new application for benefits.
People who need support to make decisions are vulnerable to abuse, neglect and exploitation, simply because they rely on help and support given by others. While the vast majority of carers and others involved in the care of vulnerable people are entirely trustworthy, everyone should be alert to signs of abuse and take swift action to prevent or stop itit.
if you are concerned about the collection or use of social security benefits, contact the local Job Centre Plus. (For those over the age of 60, with Pension Services).
if you are concerned about the actions of an attorney or receiver, contact the Public Guardianship Office.
if you think a criminal act has been committed against the person you care for, such as theft or physical or sexual assault, discuss your concerns with the police.
if you think that any form of abuse, such as neglect, has happened, discuss your concerns with Social Services.
If you are concerned about the care or treatment given to the person in any NHS setting, contact the managers of the NHS Trust or Social Services.
You can ask for help from an advice agency or a solicitor if you want to pursue a complaint.
Below is a table detailing a number of useful organisations, and the areas in which they may be able to help you:
| Organisation | What it is/does | Contact Details |
|---|---|---|
| Action on Elder Abuse | Provides a confidential helpline service for anyone concerned with the abuse of older people and emotional support for those involved. | Astral House 1268 London Road London SW16 4ER Freephone Helpline: 0880 8808 8042 www.elderabuse.org.uk |
| Age Concern | Provides national information line for older people and their concerns. | Age Concern England Astral House 1268 London Road London SW16 4ER Tel: 020 8765 7200 www.ageconcern.org.uk |
| Alert | Campaigns against legalised euthanasia. Provides information on matters relating to Living Wills, Advance Directives and Motor Neurone Disease. | 27 Walpole Street London SW3 4QS Tel: 020 7730 2800 www.donoharm.org.uk |
| Alzheimer's Society | Leading care and research charity for people with all forms of dementia, their families and carers. | Gordon House 10 Green Coat Place London SW1P 1PH Helpline: 0845 300 0336 www.alzheimers.org.uk |
| CARERS UK | Looks after family, partners or friends in need of help because they are ill, frail or have a disability | Ruth Pitter House 20/25 Glasshouse Yard London EC1A 4JT CarersLine 0808 808 7777 020 7490 8824 www.carersonline.org.uk |
| Citizen Advocacy Information and Training | Provides basic and practical advice about citizen advocacy groups in the initial stages of setting up schemes. Runs training days and gives support to existing citizen advocacy schemes | Unit 164 Lee Valley Technopark Ashley Road London N17 9LN 020 8880 4545 www.citizenadvocacy.org.uk |
| Contact the Elderly | National charity organising gatherings for frail elderly people who live alone. Volunteer groups throughout the UK. | 15 Henrietta Street Covent Garden London WC2E 8QG Freephone: 0800 716543 www.contact-the-elderly.org |
| Counsel and Care | Provides a confidential and free advisory service for people over 60. Gives expert advice about welfare benefits and financial help where possible towards essential care. | Twyman House 16 Bonny Street London NW1 9PG Helpline: 0845 300 7585 www.counselandcare.org.uk |
| Court of Protection | See Public Guardianship Office. | |
| Dementia Care Trust | Offers information and phone advice; running carers' support groups; educating the public and professionals; running day care, counselling and relief caring services | Kingsley House Greenbank Road Bristol BS5 6HE 0870 443 5325 0117 952 5325 www.dct.org.uk |
| Down's Syndrome Association | Offers help for people with down's syndrome. | 155 Mitcham Road London SW17 9PG 020 8682 4001 www.downs-syndrome.org.uk |
| Foundation for People with Learning Disabilities | Works with people with learning disabilities to improve the quality of their lives. | 7th Floor 83 Victoria Street London SW1H 0HW 020 7802 0300 www.learningdisabilities.org.uk |
| General Medical Council | Charity whose purpose is the protection, promotion and maintenance of the health and safety of the community. Statutory body which sets and monitors professional standards for doctors. | 178 Great Portland Street London W1W 5JE General Enquiries Desk: 020 7580 7642 www.gmc-uk.org |
| Headway - brain injury association | Sets up self-help and support groups; providing information, publicity and booklets on patients' problems, and help for families. | 4 King Edward Court King Edward Street Nottingham NG1 1EW Helpline: 0808 800 2244 0115 924 0800 (Nottingham) 020 7841 0240 (London) www.headway.org.uk |
| Help the Aged | Promotes and develops practical programmes by identifying needs, raising public awareness and fundraising. Offers free advice through Senior Line and via information leaflets. | St Jame's Walk Clerkenwell Green London EC1R 0BE Free welfare rights adviceline: 0808 800 6565 www.helptheaged.org.uk |
| Help the Hospices | Hospice Information provides an information service for health professionals and members of the public. | Hospice House 34 - 44 Britannia Street London WC1X 9JG Helpline: 0879 903 3 903 www.hospiceinformation.info |
| Linacre Centre for Healthcare Ethics | Catholic bioethics centre producing academic and other material on a range of issues in healthcare, including euthanasia and the withholding and withdrawing of treatment and care. Also provides advice to individual health practitioners on ethical aspects of their work. | 60 Grove End Road London NW8 9NH 020 7806 4088 www.linacre.org |
| Manic Depression Fellowship | Runs a nation-wide network of 147 self-help groups organised by people with manic depression and their families and friends. | Castle Works 21 St Georges Road London SE1 6ES 020 7793 2600 www.mdf.org.uk |
| MedicAlert Foundation | Non-profit making, registered charity providing a life saving identification system for individuals with hidden medical conditions and allergies. | 1 Bridge Wharf 156 Caledonian Road London N1 9UU Tel: 0800 581 420 www.medicalert.org.uk |
| MENCAP | Offers support for people with a learning disability and their families. Provides specialist information, homes, leisure activities and further education for people and young adults with learning disabilities. | 123 Golden Lane London EC1Y 0RT Helpline: 0808 808 1111 Tel: 020 7454 0454 www.mencap.org.uk |
| Mind (National Association for Mental Health) | Leading mental health charity in England and Wales - works for a better life for everyone with experience of mental distress. | 15-19 Broadway Stratford London E15 4BQ 020 8519 2122 Mindinfoline: 08457 660 163 www.mind.org.uk |
| Motor Neurone Disease Association | Independent charity that offers support to people with Motor Neurone Disease and those who care for them | PO Box 246 Northampton NN1 2P2 Tel: 01604 250505 Helpline: 08457 626262 www.mndassociation.org.uk |
| National Autistic Society | Leading UK charity providing information and support for people with autism spectrum disorders and their families, also provides information for professionals and journalists. | 393 City Road London EC1V 1NG 020 7833 2299 Helpline: 0870 600 85 85 www.nas.org.uk |
| Official Solicitor | Provides representation for minors or adults under legal disability in county court or High Court proceedings in England and Wales. Protects best interests and human rights of those who are unable to represent themselves in legal process. | 81 Chancery Lane London WC2A 1DD Tel: 020 7911 7127 http://www.officialsolicitor.gov.uk/ |
| Patient's Association | Provides help and advice to patients and campaigns for change. | PO Box 935 Harrow Middlesex HA1 3YJ Tel: 020 8423 9119 Helpline: 0845 608 4455 |
| Patient Concern | Committed to promoting choice and empowerment for all health service users. Special advisers and supporters contribute their time, expertise and experience free of charge. | PO Box 23732 London SW5 9FY Tel: 020 7373 0794 www.patientconcern.org.uk |
| The Prevention of Professional Abuse Network POPAN | Helps people abused by health or social care professionals. Providing information, support, and advocacy. Preventing abuse through training and awareness raising and development of policy and research. | 1 Wyvil Court Wyvil Road London SW8 2TG 020 7622 6334 Support line: 0845 4 500 300 www.popan.org.uk |
| Public Guardianship Office | Provides financial protection services for clients who are not able to manage their financial affairs because of Mental incapacity. Supports the families and advisers of the person who is incapable | Archway Tower 2 Junction Road London N19 5SZ Customer service helpline 0845 330 2900 Enquiry Line: 0845 330 2900 / www.guardianship.gov.uk |
| Relatives and Residents Association* | Help with finding the right care home and costs. Practical advice for anyone with an elderly relative or friend living in a home or long-stay hospital. | 5 Tavistock Place London WC1H 9SW Adviceline: 020 7916 6055 www.relres.org.uk |
| RESCARE (The National Society for mentally disabled people in residential care) | Provides information, advice and support to families including guidance and help through legal advice. | Rayner House 23 Higher Hillgate Stockport SK1 3ER Tel: 0161 474 7323 www.rescare.org.uk |
| Respond | Runs a national helpline for people with learning disabilities, professionals and carers, dealing with the issues of abuse and abusing. | Third Floor 24-32 Stephenson Way London NW1 2HD Helpline 0808 808 0700 www.respond.org.uk |
| Rethink (formerly National Schizophrenia Fellowship) | Charity for people who experience severe mental illness and for those who care for them. | 17 Oxford Street Southampton SO14 3DJ General Enquiries: 0845 456 0455 Advice Line: 020 8974 6814 www.rethink.org |
| SANE | Runs an out of hours phone helpline, giving information on all forms of mental illness and offering support to suffers, their friends and families and professionals. | 1st Floor Cityside House 40 Alder Street London E1 1EE Helpline: 0845 767 8000 www.sane.org.uk |
| Scope (Major disability charity with a focus on cerebral palsy) | Provides a wide variety of services for disabled people including accommodation, educational and training facilities, and fieldwork support for disabled people and their families. | 6 Market Road London N7 9PW 020 7619 7257 Cerebral Palsy Helpline: 0808 800 3333 www.scope.org.uk |
| Speakability | Supports people living with aphasia and their carers. | 1 Royal Street London SE1 7LL 020 7261 9572 Helpline: 080 8808 9572 www.speakability.org.uk |
| Solicitors for the Elderly | An interest group led by solicitors for practitioners committed to providing and promoting a comprehensive range of high quality legal services for older people, their family and carers. | PO Box 9 Peterborough PE4 7NN Tel: 01733 326769 www.solicitorsfortheelderly.com |
| Stroke Association | Provides practical support for people who have had strokes, their families and carers. | Stroke House 240 City Road London EC1V 2PR 020 7566 0300 Helpline: 0845 30 33 100 www.stroke.org.uk |
| Values into Action | Research and campaigning organisation dedicated to the human and civil rights of people with learning difficulties. | Oxford House Derbyshire Street London E2 6HG Tel: 020 7729 5436 www.viauk.org |
| VOICE UK | Support and action group for people with learning disabilities who have been abused. Puts people in touch with counsellors and other professionals and providing counseling, legal advice, training, support and mediation. | PO Box 238 Derby DE1 9NJ The College Business Centre Uttoxeter New Road Derby DE22 3WZ Tel: 0870 013 3965 www.voiceuk.clara.net |
| Voluntary Euthanasia Society | Provides advice on making an Advance Directive. | 13 Prince of Wales Terrace London W8 5PG Tel: 020 7937 7770 www.ves.org.uk |