Information for carers using NHS services

Carers and consent

People who have a learning disability or have difficulty communicating may still be able to make decisions.

As a carer, you must always assume that people can make decisions unless there is evidence suggesting they can’t.

Adults with incapacity

An adult with incapacity is someone aged 16 or over who has a mental disorder that makes them unable to:

• make a decision
• communicate a decision
• understand a decision
• act on a decision
• remember a decision they have made.

When a decision is needed about the health care of the person you care for, NHS staff must decide if that person has the capacity to give consent.

Rights of adults with incapacity

Under the the Adults with Incapacity (Scotland) Act 2000:

• adults with incapacity have certain rights to help them manage their lives
• another adult can be given the power to make decisions for an adult with incapacity
• if another adult makes a decision for an adult with incapacity then this needs to be in line with the principles of the Act

Decisions about consent

Before making a decision, NHS staff should talk to the person you care for about their health care and treatment.

They must be sure the person:

• understands what the treatment is and why it’s needed
• understands the benefits and risks of the treatment
• understands that there are other options and can decide between these options
• understands what happens if no treatment is given
• remembers information long enough to make a decision
• can tell the health professional what they have decided

If the healthcare professional is undecided, they should then talk to you and anyone else closely involved in the person’s care. This is to make sure that what they want is taken into account in the decision-making process.

Certificate of incapacity

If it’s decided that the person you care for cannot give their consent, NHS staff will issue a section 47 certificate of incapacity.

This will normally be kept with the person’s health record for a year but could be extended to three years if the person’s condition is unlikely to improve.

Rights of carers

As a carer, you have the right to be involved in decisions about a persons care if that person can’t make a decision for themselves.

This is true whether you are an adult or young carer, a young carer under 16, or a paid or unpaid carer.

Making decisions

Although carers can and should be involved in decisions, they cannot make a final decision on a persons care unless they’re that person’s legal proxy.

If you know what the person you care for wants, you should tell the health professional looking after them. Any information you give health professionals should be kept in the person’s health record.

Your rights as a carer

If decisions are being made about the person you care for, you have a right to:

• say what you think about any planned health care or treatment
• have your views taken into account when a final decision is made
• disagree with a decision
• ask for a second opinion if you are unhappy with the decision
• go to court about a decision
• ask for written information about the care and treatment to take away

Rights of legal proxy

A legal proxy is a person that can make medical, welfare or financial decisions for an adult with incapacity.

Types of legal proxy

There are different types of legal proxy. These are:

• welfare attorney – someone appointed to make decisions about a person’s care and treatment if they are ever unable to do so themselves
• continuing power of attorney – someone appointed to make decisions about a person’s finances and property matters if they are ever unable to do themselves
• welfare guardian – someone appointed by a court to make decisions about a person’s care and treatment on their behalf
• financial guardian – someone appointed by a court to make financial decisions on behalf of the adult
• an intervention order – someone appointed by a court to make a one-off decision about a person’s care or treatment within a set period

An attorney or guardian can also be appointed with a combination of welfare and financial powers.

How to become a legal proxy

Applying to become a legal proxy can be complicated and you may need to seek legal advice from a solicitor or legal advisor.

The Office of the Public Guardian (OPG) may be able to help you with this process.

Your rights as a legal proxy

If you’re a legal proxy, you should be asked to consent on behalf of the person you care for.

Before doing so, you may be asked to show a copy of the power of attorney document, guardianship order or intervention order as proof.

In an emergency, a doctor can go ahead with treatment without your consent if it will:

• save the person’s life
• stop them suffering more serious harm

If you are a legal proxy, you may also have the right to see their health records.

Disagreeing with a decision as a legal proxy

As a legal proxy, you have the right to disagree with the care or treatment of the person you care.

You cannot demand that a particular treatment is given but can object to a treatment that you think should not be given.

If you disagree with a decision, a second opinion will be sought from an independent doctor.

If the second doctor agrees with the first doctor’s decision, the health care or treatment can be given.

If the second doctor does not agree with the first doctor’s decision, it can’t.

If you disagree with the second doctor’s opinion, you can go to the Court of Session to ask for the treatment to be stopped. You may need to get help from a solicitor if you want to do this.

Disagreeing with a decision if you are not a legal proxy

If you disagree with a decision and are not a legal proxy:

• your views should still be taken account
• you can ask for a second opinion

A doctor can still treat the person you care for unless you go to court and get an order to stop it.

Making a complaint about a decision

If you’re unhappy about a medical decision, you have the right to make a complaint.

Find out more about giving feedback and making a complaint

Rights of the person you care for

The person you care for has the right to:

• make decisions about their health care and treatment
• be properly consulted about their health care and treatment
• have someone with them at their medical appointment
• help with making decisions and expressing their wishes

Making decisions

Any decisions about a person’s health care or treatment must always:

• benefit them
• be necessary
• restrict their freedom as little as possible
• take into account their past and present wishes

Treatment without consent

The person you care for can be treated without consent if:

• the person cannot make a decision on their own and no one is available to make the decision for them
• it is needed to save the person’s life or stop them suffering more serious harm
• the person you care for is being looked after under the Mental Health (Care and Treatment) (Scotland) Act 2003, they can be treated for their mental illness or disorder without consent

Specialist treatments

Only a doctor appointed by the Mental Welfare Commission for Scotland can allow the following treatments to be given to people with incapacity:

• Abortion
• Electroconvulsive therapy (ECT) for mental disorder
• Drugs to reduce sex drive
• Any treatment that may lead to sterilisation

Only the Court of Session can allow the following treatments to be given to people with incapacity:

• Sterilisation
• Surgical treatment to reduce sex drive
• Neurosurgery for mental disorder

Research

Research on adults with incapacity can only be done if:

• it will increase knowledge of the condition causing the person’s incapacity
• it will benefit the person or others with a similar condition, and will cause little or no risk or discomfort
• the person does not object
• consent has been obtained from a legal proxy or relative
• the research has been approved by a research ethics committee

Health rights support for carers and other groups

Mental Welfare Commission for Scotland

The Mental Welfare Commission for Scotland (MWC) helps to look after the rights and welfare of those with mental illness, learning disabilities and other related conditions.

They can also give you information and advice on people’s rights under the Adults with Incapacity Act.

Office of the Public Guardian (Scotland)

The Office of the Public Guardian can provide information about becoming a legal proxy.

Information Commissioner’s Office (Scotland)

The Information Commissioner’s Office (Scotland) can provide more information about your rights under the Data Protection Act.

They can also be contacted if you wish to complain about how the NHS has used or protected your information.

Healthcare Improvement Scotland

Healthcare Improvement Scotland (HIS) set the standards and quality of care that NHS is expected to meet.

Care Information Scotland

Care Information Scotland (CIS) offers a single point of care information for older people in Scotland through their website and helpline.

You can reach the CIS helpline on 0800 011 3200.