Preparing for Adulthood: Rights, Responsibilities, Consent and Confidentiality

Download leaflet

Preparing for Adulthood: Decisions, Rights, Responsibilities, Consent and Confidentiality (285kB)

Introduction

Preparing for Adulthood or Transition is the name given to the process of moving from children’s services to adult services. Understanding how a person makes decisions about their healthcare is an important part of moving to adult services.

Often, parents make decisions for their children and adults make decisions for themselves. However not all young people and adults with learning disabilities or complex needs can make decisions about their own care and treatment.

This leaflet explains the differences between decision-making, consent and information sharing for young people and adults who cannot make decisions for themselves. This information is important if you are a parent or carer of a young person with learning disabilities or complex needs.  The information in the leaflet will help you support your child as they transition to adult services.

This leaflet explains

• How the law decides whether someone can make decisions for themselves (capacity)
• How a care or treatment decision is made when someone is unable to decide for themselves
• How the law protects the freedom of people who cannot make decisions about where they stay or live
• How the law protects the personal information of people who cannot make healthcare decisions

If you would like this information in another language or format, please contact Preparing for Adulthood on 0151 293 3663 or [email protected]

Parents and carers

Transition is a time of change for parents and carers too, as the law recognises the rights of young people. Some parents and carers may worry that they may not be involved as much, or their child may not be ready for the changes.  It is important that parents and carers remember they can still be involved in their child’s care.

The Teams at Alder Hey Children’s Hospital

Not every young person will need the same level of support, and Preparing for Adulthood is different for everyone, including parents and carers.  Health and healthcare discussions with various specialities can be a sensitive and personal issue, and we encourage young people to discuss their healthcare decisions with their parents or carers.

We will make sure young people and their families understand any changes and will offer lots of information, advice and guidance.   

How the Law decides whether someone can make decisions for themselves

A person with capacity to make a particular decision can make that decision for themselves at the time the decision needs to be made. The Mental Capacity Act (MCA, 2005) is a law that supports decision-making for anyone over the age of 16 who cannot make their own decisions about their care or treatment.

The Mental Capacity Act presumes that everyone aged 16 or over can make decisions about their health and care. A capacity assessment is undertaken when there is concern that a person cannot make a particular decision. For example, someone may be able to decide whether they want fish and chips for tea but they may not be able to decide whether they should have an operation.  Capacity assessments are usually undertaken by the person’s health or care team as a routine part of the person’s care.

Professionals must make every reasonable effort to support the person to make a decision before they undertake a capacityassessment. This means

• Making sure that the person is not under the influence of medication that may make it difficult for them to understand
• Considering whether the person may have capacity in the future and if the decision can wait until then 
• Presenting the information in a way the person can understand

Professionals ask four questions to decide whether a person has capacity:

• Can the person understand the information needed to make the decision?
• Can the person retain the information for long enough to make a decision?
• Can the person weigh the information to make a decision?
• Can the person communicate the decision they have made?

The person has the capacity to make the decision for themselves if the answer to all these questions is “yes”.

The important thing is that the person can make the decision.  The decision does not have to be a wise decision and other people don’t have to agree with the decision.

The person should still participate in decision-making as much as possible, even if they do not have capacity to make the decision on their own. For example, a person may be able to make smaller decisions about a treatment, like what arm the nurse should take blood from. Any professional caring for the person must also listen to what the person wants or says, for example, if a person is upset then this may mean stop.

How a Healthcare decision is made when someone cannot make the decision for themselves

The Mental Capacity Act explains how decisions must be made for people who cannot make decisions for themselves.

Parents or those with parental responsibility will normally make decisions for children under 16 years who cannot make decisions for themselves. There is a different approach for making decisions for adults and young people of 16 or over without capacity. This is called shared decision-making.

Shared decision makingis where health and social care professionals work in partnership with the young person, their parents, carers and other people such as family members to make decisions.

Shared decision making is based on establishing what is in the person’s best interests. This means what is best for that person at that time.

A person’s best interests are decided by:

• Listening to what the person says they want, or what we think they would want
• Listening to what their parents and other people who have an interest in the person’s welfare think
• Considering how all this might affect the person’s health and well-being

Making a decision for another person can be difficult. If there are several options that are in the person’s best interests, the decision that is chosen should be the one that is the least restrictive. This promotes the freedoms and rights of that person. It might be that there is no need to do anything or make a decision at all.

Parents and carers are especially important in shared decision making as they know what their child’s life is like day to day. They will have a greater understanding of what is important to, and for, the young person. Sharing experiences and thoughts about what is important to and for the young person is an important part of supporting their transition to adult services. The change from making decisions as parents, to contributing to shared decision making, can be very difficult and challenging.

If young people feel they are not being listened to, this needs to be explained to the team caring for the young person. You could ask to meet with the young person’s consultant, the person in charge of their care, or the whole team to discuss thoughts and feelings. This can be done by parents and carers or with support from family or friends.

If you still feel you have not been listened to, contact PALs (Patient Advice and Liaison Service) within the hospital.

Extended Responsibilities of Parents

Most of the time the best interests of the person are agreed upon by everyone involved and decisions are made using the shared decision-making approach. But parents or other relatives can also apply for the authority to make some decisions on behalf of an adult or young person who lacks capacity.

The Court of Protection is a special court that deals with the Mental Capacity Act. The Court of Protection can appoint a person’s parent or relative as their Personal Welfare Deputy. The Personal Welfare Deputy can take decisions about the person’s personal welfare if they don’t have capacityto make that decision themselves. 

The Court of Protection may appoint a Personal Welfare Deputy when there is a family disagreement about a person’s best interests. Sometimes the Court of Protection appoints a Personal Welfare Deputy because there are many extended health and social care decisions to make.

For further information please refer to: https://www.gov.uk/become-deputy

How the Law protects the freedom of people who cannot make decisions about where they stay or live

A person with capacity who is being cared for in a particular place such as a hospital, care home or respite provider can decide when to leave. The person’s freedom to come and go as they please is called their Liberty.  A person’s Liberty is protected by law. 

An adult or young person might be deprived of their Liberty if they are cared for in a particular place outside their normal home but don’t have the capacity to decide to leave.  Deprivation of liberty can be challenging for parents or carers to understand.  Deprivation of liberty is not a reflection of the care provided.   The person may be very happy where they are being cared for and they may be receiving treatment to make them feel better.

The law uses Liberty Protection Safeguards (LPS) to protect the liberty of adults and young people who don’t have capacity.  Liberty Protection Safeguards protect the liberty of people who lack capacity to decide whether to stay in a particular place outside their normal home and would not be able to leave, whether they wanted to or not. 

Liberty Protection Safeguards apply to an adult or young person of 16 or over when

• They do not have the capacity to make a decision about where they are being cared for
• They are subject to continuous supervision and control
• Their freedom to come and go is restricted because of this decision

Liberty Protection Safeguards ensure that a person is only deprived of their liberty when:

• It is absolutely necessary
• It is in the person’s best interests
• It is the least restrictive option

A specially trained Best Interests Assessor decides whether a deprivation of liberty is in the best interests of an adult or young person without capacity.  Best Interests Assessors are specially trained nurses, social workers or mental health practitioners who are not involved in the care of the person. They ensure that the person has an advocate as part of the decision-making process.  They ensure that the views of parents, carers and anyone interested in the welfare of the person, including healthcare professionals, are taken into account.

The hospital, care home or respite provider will make an application to the Court of Protection for a deprivation of liberty. (DOLS  The decision must be reviewed regularly to ensure that it is still the best option.

For further information, please refer to:

Social Care Institute for Excellence. Mental Capacity Act (MCA). www.scie.org.uk/mca/

Consent

When someone makes a decision about their healthcare this is called consent.  Nobody can force another person to give consent. This means that doctors, nurses and other healthcare professions legally have to get permission from you to provide any treatment. There are two types of consent that can be given.

Informed consent

Before informed consent is given for most medical tests and procedures a person should:

• Receive information about it in a way they can understand.
• Be given time to think.
• Have had an opportunity discuss the choices available to them.

Implied / inferred consent

This is when a person indicates their consent for an examination or treatment.  For example, rolling up their sleeve to have their blood pressure taken. Even in this example, young people can still ask questions and take time to think about the treatment or test.

Who can give consent?

For children and young people under the age of 16, their parents, or those with legal parental responsibility can make most decisions for their children. 

At 18 a young person is presumed to be able to make decisions about their health.

A 16 or 17 year old is able to make decisions and consent to their treatment without parental consent.

Competent

Young people under the age of 16 can still be considered to be able to make decisions about their health without their parents. This is known as being Competent. This means that a healthcare professional will assess a young person to see if they are able to make an informed decision about their care.

Parents and carers roles

Parents and carers may feel left out when we offer to see their child without them or to get consent.  We will ask permission from the young person if parents or carers can come with them.

Parents still have a very important role in their child’s healthcare.

How the Law protects the personal information of people who cannot make healthcare decisions

Confidentiality means keeping a person’s personal information private. A child’s personal information is normally discussed with the child’s parents or those with parental responsibility to help them make decisions on their child’s behalf.  However, adults and young people aged 16 and over have the right to confidentiality.

Professionals sometimes need to share personal information about a person who does not have capacity.  This could mean sharing personal information with parents or carers.  It could also mean sharing personal information with other professionals. 

Professionals will only share relevant personal information if it is necessary and in the person’s best interests to do so.  This may be because the information is needed for a decision about the person’s care or treatment.  It may also be because professionals are concerned about harm or the welfare of the person who does not have the capacity.  Professionals must only share personal information with people who need to know. They must only share essential and relevant information.

Confidentiality also applies to information that parents or carers share with health and social care professionals about the person’s health.

Exceptional circumstances when information has to be shared

There are times when total confidentiality is not possible, and this can happen for children, young people and adults. For example, if a health professional has any concerns about harm or welfare of the young person or another person, they may have to tell someone else.

Further information and helpful resources

Please do not hesitate to discuss any of these issues with a healthcare professional involved with your care.

You may find these resources helpful for further information.

This leaflet only gives general information. You must always discuss the individual treatment of your child with the appropriate member of staff. Do not rely on this leaflet alone for information about your child’s treatment.

This information can be made available in other languages and formats if requested.

PIAG: 617