Adanced Statements

Advance Statements

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Making an advance statement can help to ensure that you get the treatment of your choice if you have a further episode of mental illness You can also use an advance statement to state who you want to manage your benefits or direct payments and other practical matters if you become ill.

Advance statements, also referred to as advance decisions, advance directives or advance agreements, are an expression of the wishes of someone who experiences mental illness about the type of care and treatment to be provided if they become unwell. The three names are often used interchangeably.

Advance statements – People who understand the implications of their choices can state in advance how they wish to be treated if they suffer loss of mental capacity.

Among the different types of statements are advance decisions or directives.

Advance decisions or directives (refusals) - Competent, informed adults have an established legal right to refuse medical procedures in advance. These are rarely used for people with mental health problems because they can be overridden by the Mental Health Act. Advance agreement - A service user can draw up a plan for a future crisis, in agreement with the main service provider.

Crisis cards - Crisis cards can be used to try to ensure that an advance statement is put into effect. They are carried around on your person and so should be available if and when you become ill. Crisis cards take a number of forms. Basic cards contain vital information such as who to contact if you are ill, who your doctor is and the name of your condition. More complex ones include details of medication that you are taking, treatments you are refusing in the event of a crisis and preferred treatments.

1. Why do people make advance statements?

There are a number of reasons why people may decide to make an advance statement. For some people making an advance statement for yourself is an empowering experience, making decisions when you are well which can be implemented when you are ill. It can mean that you are less worried about what will happen if you have a relapse, especially if your advance statement has been agreed with your doctor, health and social care professionals.

Research has also found that there are distinct advantages to having made an advance statement. A study at the Maudsley Hospital in London found that those -1Rethink is the operating name of the National Schizophrenia Fellowship, 15th Floor, 89 Albert Embankment, London SE1 7TP Phone 0845 456 0 455, Fax 0207 820 1149, e-mail: info@rethink.org web site: www.rethink.org. For publications: www.mentalhealthshop.org. © 2009, all rights reserved.

No part of this leaflet may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording or by any information storage and retrieval system without the permission, in writing, of the National Schizophrenia Fellowship. Rethink Advice & Information Service: 0207 840 3188 Monday to Friday 10am – 1pm

people who had made advance statements with the support and agreement of health professionals experienced a reduction in the number of compulsory admissions under the Mental Health Act1.

2. What is the legal status of advance statements?

The legal status of advance statements is as follows: Only a refusal of treatment (advance decision or directive) can be legally binding 2.

The decision must be clear and unambiguous in order to be legally enforceable.

In most cases, advance decisions or directives can be overruled when an individual is sectioned under the Mental Health Act. However, with the introduction of the Mental Health Act 2007, a valid advance decision or directive refusing electroconvulsive therapy cannot be overridden (unless it is immediately necessary to save a person’s life or to prevent a serious deterioration in their condition)3.

The decision or directive can be ignored if it does not apply to a specific situation. A directive can only be made with the information known at the time. For instance, if you requested treatment with a drug which was subsequently withdrawn, you would not be given that drug and may be given an alternative.

To make an advance decision the person must be judged to be 'competent' or 'have necessary capacity'.

3. Advance statements and mental capacity For an advance statement to be accepted, and in the case of advance directives, legally binding, you must have had the capacity to make the statement at the time when it was made. The Courts define mental capacity as:   

The ability to understand and retain the information (in this case about treatment) And to believe the information And to weigh up the information before arriving at a decision.

The issue of mental capacity is covered in the Mental Capacity Act 2005. This and a more detailed definition of mental capacity are discussed in the fact sheet ‘Mental Capacity’ available from Rethink Advice & Information Service.

4. Making an advance statement The first step in making an advance statement is to find out if your local Mental Health Trust/Primary Care Trust (PCT) is running any advance statement scheme.

Belonging to a local scheme will probably give your advance statement more recognition than if you wrote it yourself. The scheme may detail what information you need to record, who to discuss this with and if you have to get any other persons agreement or signature, for example your doctors, and finally with whom and how your statement is stored and accessed.

There is no standard layout for how an advance statement should be set out. An advance statement can be oral although it is better if it is writing. The British Medical Association's Code of Practice suggests that an advance statement should include the following: -2Rethink is the operating name of the National Schizophrenia Fellowship, 15th Floor, 89 Albert Embankment, London SE1 7TP Phone 0845 456 0 455, Fax 0207 820 1149, e-mail: info@rethink.org web site: www.rethink.org. For publications: www.mentalhealthshop.org. © 2009, all rights reserved.

No part of this leaflet may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording or by any information storage and retrieval system without the permission, in writing, of the National Schizophrenia Fellowship. Rethink Advice & Information Service: 0207 840 3188 Monday to Friday 10am – 1pm

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Your full name and address Name and address of your GP A clear statement of your wishes. This could be the types of treatment that you would prefer should your health deteriorate. For example, if a choice of drugs was available, you could specify a preference for a particular drug if you know that it will have fewer side effects for you than alternative drugs.

Particular treatments and procedures you do not want.

Name, address and telephone number of a person of your choice, if you have one. If there was anything in the statement that was unclear, this person could help to explain what you meant when you made the statement.

Whether you took advice from professionals Your signature Date of signing Witness signature

You could also include practical arrangements, like who you would like to look after your children or pets, deal with your benefits or bills whilst you are ill. If you are receiving direct payments to buy services of your choice, you can state who you want to manage this if you are unable to do so for a while. Rethink’s Advice & Information Service can provide you with further information about this.

When you are deciding who will look after domestic and practical arrangements should you become ill, you should discuss your wishes with them and get their agreement.

Storing your statement An advance statement can only be taken into account if the relevant health care professionals know that it exists. It is therefore important that people who are close to you know that you have made an advance statement and know where it is kept. You should consider giving a copy of the statement to your GP, one to be stored in your psychiatric notes, and one to a person of your choice. Some people carry a card (crisis card) or wear a bracelet indicating that they have made an advance statement and explaining where it is kept. If there is an emergency and you need treatment urgently, the treatment will not be delayed in order to try to find an advance statement.

Updating your statement If you have made an advance statement, it is important to update it if you change your mind about its contents or if you wish to change your choices in any way. This could involve preparing a supplementary statement to be attached to your original statement. If you are making a significant change, you may wish to prepare a new statement and destroy the original statement and any copies to avoid confusion.

Even if you don't want to make any changes to your statement, it is a good idea to review it regularly and to sign and date it to confirm that you are still happy with its contents.

-3Rethink is the operating name of the National Schizophrenia Fellowship, 15th Floor, 89 Albert Embankment, London SE1 7TP Phone 0845 456 0 455, Fax 0207 820 1149, e-mail: info@rethink.org web site: www.rethink.org. For publications: www.mentalhealthshop.org. © 2009, all rights reserved.

No part of this leaflet may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording or by any information storage and retrieval system without the permission, in writing, of the National Schizophrenia Fellowship. Rethink Advice & Information Service: 0207 840 3188 Monday to Friday 10am – 1pm

Ending an advance statement If you decide that you no longer want to have an advance statement, you can revoke it at any time. If you do want to revoke it, you should destroy the original statement and any copies to avoid confusion. If you have chosen a person to be responsible for your statement or to do something for you if you become ill, it is a good idea to let them know if you do this.

5. Examples of advance statements that are in use or have been used Three examples of advance statements are provided here. They represent three different ways of working from one that is entirely user/carer owned and led to one that is led primarily by health and social professionals.

Kent and Medway Mental Health Trust Although initiated by the Trust, this is an example of a mainly user and carer-led project. The advance directive is available from mental health professionals.

Individuals can opt to complete the directive on their own without any professional input, work with a mental health advocate, or with a mental health professional of their choice.

Information that you may choose to fill in the directive includes:    

medication and treatment that you would prefer medication, treatment and care that has worked well for you in the past things that have not worked well for you in the past needs that are specific to you including:  diet  physical health  religion  a section on home life including information on care of:  children  pets  security and the home  other people who need to be contacted

The user decides who to inform to pass their directive on to but they are strongly advised to pass it onto their care coordinator. Care Programmes have a question relating to the presence/absence of an advance directive and care coordinators are asked to discuss making a directive as part of CPA reviews.

Institute of Psychiatry Known as the Joint Crisis Plan, the Institute of Psychiatry piloted an advance statement as a joint initiative between user and mental health team. The user is offered a menu of information and they choose sections which are appropriate to them. A key worker is often involved at this stage to give guidance. The sections are as follows: -4Rethink is the operating name of the National Schizophrenia Fellowship, 15th Floor, 89 Albert Embankment, London SE1 7TP Phone 0845 456 0 455, Fax 0207 820 1149, e-mail: info@rethink.org web site: www.rethink.org. For publications: www.mentalhealthshop.org. © 2009, all rights reserved.

No part of this leaflet may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording or by any information storage and retrieval system without the permission, in writing, of the National Schizophrenia Fellowship. Rethink Advice & Information Service: 0207 840 3188 Monday to Friday 10am – 1pm

Contact information  your name and address  your GP  your psychiatrist  your social worker Current care and treatment plan  your diagnosis  physical illness or allergies  current treatment/care plan  current medication and dosage  circumstances that lead you to become ill  what happens when you first start to become ill  treatments that have been helpful during crises or relapses  treatments that have not been helpful  Care in a crisis  What you would like done when you first become ill  preferred treatment of care during a relapse  specific refusals regarding treatment during a crisis  circumstances under which you would like to be admitted to hospital for treatment  Practical help in a crisis, a nominated person and what you would like them to do practical arrangements for a crisis.

A crisis planning meeting is arranged in which mental health professionals, the user, and a facilitator are invited. The facilitator's role is to prompt either the user or team to consider issues that may not have been addressed, to ensure that the user feels able to express their views and that the final decision about what is to be included is that of the user. Each entry should be discussed considering the possibility of becoming unwell in the future, recalling past relapses and reviewing triggers for relapse, early signs of relapse, things that have been helpful or unhelpful when unwell and other factors relevant to care in a future crisis. Where there is disagreement this can be included on the plan.

The information is carried on a card and is primarily useful to the user rather than for the services. The user nominates who they would like to have a copy of the plan.

Evaluation of the Joint Crisis Plan has shown that that it has an important role in reducing the need for compulsory admission to hospital4.

Lewisham Social Services The Crisis Card developed by Lewisham Social Services is ‘professional led’. The scheme is voluntary but is an integral part of Care Programme Approach. The pack contains a series of help sheets and a crisis card. The help sheets provided include: Social Services Information Database name, address and contact number of your chosen person -5Rethink is the operating name of the National Schizophrenia Fellowship, 15th Floor, 89 Albert Embankment, London SE1 7TP Phone 0845 456 0 455, Fax 0207 820 1149, e-mail: info@rethink.org web site: www.rethink.org. For publications: www.mentalhealthshop.org. © 2009, all rights reserved.

No part of this leaflet may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording or by any information storage and retrieval system without the permission, in writing, of the National Schizophrenia Fellowship. Rethink Advice & Information Service: 0207 840 3188 Monday to Friday 10am – 1pm

Hospital Admissions  who you would like told of hospital admission who you would not like to be told of hospital admission  practical arrangements for children, pets, milkman etc.  while in hospital: how you would like to be addressed; religious and cultural needs,  treatment and needs you would like to make known  diet, allergies  security and maintenance of your home  what helps your stay in hospital and what does not help Finance  money and bills: including personal details of income including benefits, savings and details of household bills that need paying  people who are authorised or you have an agreement with to deal with your financial affairs.

Once completed, copies of the help sheets are held only by yourself and the person/people you choose. You carry around a crisis card to alert professionals to the existence of the help sheets and with details of who to contact in an emergency to get hold of them. This scheme is currently under evaluation.

6. What happens if my advance statement is not followed?

While advance statements are gaining recognition, there are still many instances when you wishes can be overridden. These include:    

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when a health professional makes a clinical judgement that refusal of or agreeing to a treatment specified by you is not in your best interests when the treatment you specify is not legal, for example, for a doctor to end your life when the health professionals act in an emergency and there is insufficient time to get hold of the advance statement when your wishes are overridden by the Mental Health Act. For instance, you may specify that you do not want to be hospitalised, but sectioning can overrule that wish. With the introduction of the Mental Health Act 2007, a valid advance directive refusing electroconvulsive therapy cannot be overridden (unless it is immediately necessary to save a person’s life or to prevent a serious deterioration in their condition). when the treatment you want is not available from the Trust treating you when the health professionals believe that you did not have the mental capacity to make the advance directive when it was signed and dated

If you receive a treatment you previously refused or do not receive one that you specifically requested, you should be given an explanation as to why this has happened and it should be marked in your notes.

If you are not given this information or you are not satisfied with the explanation given, you may want to make a complaint to the Trust that treated you. A complaint -6Rethink is the operating name of the National Schizophrenia Fellowship, 15th Floor, 89 Albert Embankment, London SE1 7TP Phone 0845 456 0 455, Fax 0207 820 1149, e-mail: info@rethink.org web site: www.rethink.org. For publications: www.mentalhealthshop.org. © 2009, all rights reserved.

No part of this leaflet may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording or by any information storage and retrieval system without the permission, in writing, of the National Schizophrenia Fellowship. Rethink Advice & Information Service: 0207 840 3188 Monday to Friday 10am – 1pm

may help you gain answers as to why the advance statement was ignored and seek to influence practice if you or other people were in the same situation again.

Information and advice on making a complaint can be obtained from Rethink’s Advice & Information Service.

Further information: The Rethink Advice and Information Service produces a number of fact sheets on a range of different issues that affect people with mental illness. They are also able to give confidential, impartial, practical advice on all aspects of mental illness. They can be contacted at: Rethink Advice & Information Service 15th Floor 89 Albert Embankment London SE1 7TP Tel: 0845 456 0455 (Monday to Friday 10am – 1pm) Email: advice@rethink.org www.rethink.org

The Rethink Advice & Information Service welcomes your feedback on whether our information was helpful to you.

You can provide feedback in the following ways: By email: Please email your feedback to us at feedback@rethink.org.

By post: You can write to us at the following address: Rethink Advice & Information Service Rethink 15th Floor 89 Albert Embankment London SE1 7TP. By telephone: You can call us on 0845 456 0455 or 020 7840 3188.

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Claire Henderson, Chris Flood, Morven Leese, Graham Thornicroft, Kim Sutherby, and George Szmukler BMJ. 2004 July 17; 329(7458): 136. doi: 10.1136/bmj.38155.585046.63.

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Mental Capacity Act 2005 Pt 1 para 24 Section 58a, Mental Health Act 1983 (as amended 2007)

Last updated 08/09

-7Rethink is the operating name of the National Schizophrenia Fellowship, 15th Floor, 89 Albert Embankment, London SE1 7TP Phone 0845 456 0 455, Fax 0207 820 1149, e-mail: info@rethink.org web site: www.rethink.org. For publications: www.mentalhealthshop.org. © 2009, all rights reserved.

No part of this leaflet may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording or by any information storage and retrieval system without the permission, in writing, of the National Schizophrenia Fellowship. Rethink Advice & Information Service: 0207 840 3188 Monday to Friday 10am – 1pm