Working with People with Learning Disabilities: Understanding and using the Mental Capacity Act June 2008.

Working with People with Learning Disabilities:

Understanding and using the Mental Capacity Act

June 2008



Contents

1. Introduction to the Act

2. Pathway for LPT Learning Disability Directorate

3. Practitioners Guide to making decisions

4. Record Form

5. Other Help

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1. Introduction


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Introduction

1. The Capacity Act April 2005

The Mental Capacity Act 2005 provides a statutory framework to empower and protect vulnerable people who are not able to make their own decisions. It makes it clear who can take decisions, in which situations, and how they should go about this. It enables people to plan ahead for a time when they may lose capacity.

Five statutory principles:

• A person must be assumed to have capacity unless it is established that they lack capacity;

• A person is not to be treated as unable to make a decision unless all practicable steps to help him do so have been taken without success;

• A person is not to be treated as unable to make a decision merely because he makes an unwise decision;

• An act done, or decision made, under this act for or on behalf of a person who lacks capacity must be done, or made, in his best interests.;

• Before the act is done, or the decision is made, regard must be had to whether the purpose for which it is needed can be effectively achieved in a way that is less restrictive of the person’s rights and freedom of action..

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Introduction (2)

2. Who to involve in assessing capacity

• You may need to involve other people in this process such as the carers, family, advocate, Psychologist, Doctor(s), Speech and Language therapist, Community nurse, Physiotherapist, Occupational therapist, social worker etc.

• Different individuals may address specific aspects of the process, e.g. Speech and language therapy to assess communication, psychology to consider memory, a carer to provide information on past experiences, medical staff to consider consequences of surgical procedures etc.

• It helps to have someone to take a co-ordinating role. When so many people may be involved careful consideration needs to be given to keeping the process confidential.

3. Recording the process

• It is essential to document all stages of the process. Clear and detailed records should be kept in order to be able to answer questions in the future about how and why the decision was made. It is good practice to set review dates as during the process any aspect could change and this could affect capacity. Record forms are included in this pack.

4. Relevant policies

• LPT has a policy which outlines the standards by which we, as practitioners employed by the LPT has a policy which outlines the standards by which we, as practitioners employed by the Trust, should operate.Trust, should operate.

• It was based on the Bill Ref: Policy for Consent to examination or TC, February 2005It was based on the Bill Ref: Policy for Consent to examination or TC, February 2005

This practitioners guide aims to help multi agency teams to understand what needs to be done This practitioners guide aims to help multi agency teams to understand what needs to be done by highlighting the main actionsby highlighting the main actions

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2. Pathway

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Referral received

Team meeting

Meets criteria for specialist health? (see page 8)

Yes No

Send back to referrers. Offer advice about appropriate action if possible.

Is it a health decision for the team or does one of its members need to take responsibility for?

Referral accepted

No Yes

Do health staff need to contribute to the process but not carry out the capacity to consent assessment? (see page 12

Complete the capacity to consent assessment

Is it a case for Independent mental capacity advocate? (IMCA)

Is it medico- legal work?

Is a capacity assessment needed at this time? (See page 9)

yes No

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Defining “specialist health” criteria

3. Is it likely that any of the following will influence the person’s capacity to make the decision at this time

Medication Epilepsy Autistic spectrum disorder

Personality Disorder Sensory impairment Emotional/ attachment issues

Limited/ aversive life experience including challenging behaviours Physical Illness

Communication issues Mental health issues

Cognitive impairments difficulties with memory, or problem solving/processing information [not exhaustive list]

1. Do they have a learning disability or is there a strong body of evidence to suggest this?

Yes No

Not specialist LD health role

Yes No

Specialist health role

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Is it about a specific

decision that is to

be taken at this time or in the near future?

Is it a major or risky

decision? (See page 10)

Is a Capacity Assessment needed at this time?

Yes

Assessment not needed at this time

Yes No

No

Assessment not needed at this time.

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What is a major decision?

Capacity Act does not define.

Depends on specifics of situation

Example

“can they decide to have a cup of tea”

Generally not major unless strongly allergic or leads to severe aggression/self-harm.

Relevant issues:

Is it a risky decision?

Is it urgent? (e.g. elective vs emergency)

Will consequences be permanent?

Do you need advice from legal team (e.g. if decision if risky or controversial.

Agree as a team

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Who will carry out the assessment?

Whose responsibility is it overall – i.e who is the decision-maker?

Who will take the co-ordinator role?

Depends on the type of decision or key issue involved.

Examples of possible co-ordinators:

Occupational therapy - road safety

Psychology - ability to keep safe in relationships

Medics/psychiatry - medication decisions or other treatment

Speech and language therapy - dysphagia

If member(s) of team have responsibility to carry out

assessment of capacity to consent

Check if there is any record of advance decisions/enduring or lasting powers of attorney?

Proceed with assessment of capacity to consent using the guidance as needed.

Ensure access to a core group for advice, particularly if inexperienced at such assessments.

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If members of team need to contribute to or enable the assessment which is

co-ordinated by others.

Where discussion of previous reports needed

Examples where the team may contribute to others’ assessments:

Community nurses – advice re desensitisation

Speech and language therapy – adapting communication

Psychology - cognitive abilities, emotional state, Autistic spectrum disorder

Medics/psychiatry - epilepsy, mental health, PD

Outreach - challenging behaviour

A case already open to the LD team

Where general advice about LD is needed

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More Examples

Accomodation - Mr X lived with his mother who has just died. He’s never lived alone and has to decide where to live next. He’s been presented with different options but his sister expresses concerns that he can’t understand them.

Court of protection e.g. whether a person has capacity to decide who they live with when others are very concerned about potential abuse or safeguarding risks.

Relationships – whether a person can keep themselves safe within relationships when their past experiences have affected their emotional or mental health.

Whether a person has capacity to decide whether to consent to blood tests needed to monitor medication side effects.

Medical treatment in acute services – e.g. a person has diagnosis of cancer and needs urgent treatment.

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3. A Practitioners guide

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I am not sure if this person has got the capacity to make this decision. What should I do?

1. Consider the person

2. Consider the decision

3. Consider the conditions

Yes No

Best interest meeting

Offer informed choice

Go ahead Involve the person

They say Yes They say No

Do not go ahead

Multi- agency meeting to ask :based on the above is the person able to make this decision for themselves?

Go aheadConsider Alternatives e.g. is the Mental Health act appropriate?

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It helps to have details about the following types of information concerning the person. This may be available from other sources e.g. CPA documentation. This will help you to consider how best to find out if they have capacity, or help that person make decisions or develop so that they can make decisions in the future. Write down any significant information from the following areas for the person for this particular decision:

• Do they have past experiences of this type of decision or choice?

e.g. choosing a holiday in past, deciding where, when, who with, yes or no?

How did they cope with that?

Any experiences of a similar type of choice, e.g. if not about holiday then college courses.

• Memory?

What type of information can they remember and for how long.

What helps?

• What is their understanding of the choices or options; and their short or long term implications?

Do they understand concrete or abstract concepts. For instance would they know what you meant when you describe something verbally (or with signs or objects of reference) or show them a photograph (or symbols) or take them on a visit or only if they had previous experience of it.

Do they understand the consequence of deciding one way or the other. Do they understand the consequence of failing to make a decision.

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• Can they weigh up the pros and cons of options and decide which they prefer on balance?

e.g. simple decisions – if I do X I can have chips but not cabbage: If I do Y then I can have cabbage but with potatoes not chips; complex decisions – if I move to X, I really like the house and staff but mum will be a long way away, if I move to Y then it has really nice staff and mum will be close but I’m not so keen on the house and the shops are a long way away.

• How does the person communicate?

e.g. Verbally, non-verbally? how do they show signs of yes or no / happy, unhappy with signs, actions etc.

• Do they understand about time?

e.g. if it’s a choice about what to do this afternoon, do they understand what afternoon means (or after lunch / coffee break?) If it’s about a longer term option like a holiday then can they understand future and if so how long (minutes, hours, days, months), have they got the communication skills to “talk” about the past or the future?

• Do they have any mental health difficulties?

e.g. anxiety or psychosis that might stop someone understanding or expressing information.

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• Any current medical difficulties?

e.g. medical illnesses or conditions can affect how we understand or express information indirectly e.g. due to fear, tiredness or anxiety or more directly due to strokes, thyroid problems, dementia, diabetes, epilepsy. Capacity can fluctuate with changing physical health or consciousness. Minor treatable illnesses can also affect peoples ability to make decisions at that time e.g. urine infection, fever

• Do they have any longstanding diagnoses?

e.g. autism might stop someone being able to process information about different choices because they want things to be same.

• Emotional state?

Is the decision upsetting or are they upset about other things?

• What cultural / religious influences might be relevant?

e.g. a person may be used to making decisions as part of a family as opposed to as an individual.

•Does the person believe the decision is theirs?

Are they used to other people making decisions for them so they can not believe that it is their choice.

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Decisions can be very different. They can be simple or complex or anything in between.

• What are the short/long term consequences of this decision?

The decision may have short or long term consequences, or low or high risk consequences. For

instance, deciding whether to drink water or tea would usually be a low risk decision with a short term

consequence (unless the person is allergic to tea or violently objects to drinking it). Deciding whether

to have a depot injection, or take a job at a local café might have higher risks or longer term

consequences for the person.

Trust guidelines state that capacity to consent is required for high risk or invasive procedures . As well

as medical procedures or medication, this might include non-medical situations such as consenting to

therapies that could make someone distressed or become ‘challenging’ before they get better. It could

also include social decisions such as moving into a new home.

• What is the level of understanding needed for this decision?

It may not be as complex as you expect. For instance, to move to a new house reasons may be as

simple as liking the furniture or that there is a cat – people do not have to make decisions based on

the information or criteria that we think is wise.

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• Is the decision long term or short term?

need for understanding of time may differ

• How complex is the choice?

e.g. I can do X or Y (needs to understand X and Y)

I can do X or not (they need to understand the consequences of doing and not doing X).

• What are the levels of risks involved?

Risks involved may make the level of evidence for understanding the choice more important because the consequences of doing or not doing X may be more severe or invasive. This does not change the process of assessing capacity but needs very clear documentation.

e.g.: Mr X understood the risks of crossing the road and knew how to do it safely. He often chose not to do it safely and took risks the rest of us felt unwise. However, he was assessed as having the capacity to make this choice.

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3. Consider the conditions

When a person has to make a decision there are various factors that must be taken into account to maximise their capacity.

• Are there environmental distractions that would affect the person’s involvement?• Noise• Level of lighting• Temperature of room• Rain• Sunny day• Thunder storm• Seating arrangement

• How able is the person to express their own opinion?e.g. does the person agree with other people all the time (acquiescence), or need to please others or feel under pressure to conform to others views? (compliance) Do they change their beliefs based on what key others say to them (suggestibility)

• How urgent is the decision?e.g. if it is not an urgent decision, time can be spent to develop capacity through visits, desensitisation etc.

• Is the decision upsetting?e.g. are they having to decide this at a time when they are already upset. This may include the people around them

• Who is the best person to support the assessment and subsequent decision?e.g. Some staff or carers may help or hinder the person’s ability to express their own views 21

Having collected ALL the information from boxes 1 “About the person”, 2 “About the decision” and 3 “About the conditions” you should be able to answer the following questions:

1. Can the person understand the relevant information?

2. Can the person retain the relevant information long enough to make the decision?

3. Can the person manipulate (weigh up the pro’s and con’s of) the information to come to a decision?

4. Can the person communicate the decision and the reasons for it?

You will need to identify any support the person needs to make the decision

The multidisciplinary team should now be able to say yes or no to the question –

has the person capacity to consent to this decision? (on balance of probabilities)

Document this stage of the process clearly.

Deciding if the person has capacity to consent to the

decision

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Offering Informed choice

If the person can consent you need to complete the process by offering them an informed choice.

The Act says that for informed choice to take place the person needs:-

a. capacity to make and understand consequences of the decision

b. sufficient information about the decision

c. to be able to make the decision free from coercion:

As part of the capacity assessment you will have already given the person a lot of information about

the decision and tested out their understanding of it. You have considered conditions that might lead to

coercion. In order to give sufficient information you need to think about the following strategies:

• The information about the choices must be given in a way the person understands and chooses e.g. CD tape, DVD, video, Braille, signed, symbols, easy words and pictures,

• Each choice should be demonstrated as far as possible and the risks and benefits for each one given in a way the person can understand.

• The person should be given as much information as possible unless they say otherwise (sometimes people may choose how much detail they want e.g. about a surgical procedure)

• All choices should be offered even if some seem risky or eccentric to you.• The person should be given something that they can look at and consider after the choice has

first been introduced.

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Offering Informed choice Click here to returnto main menu

•Repetition should be available if needed

• Understanding of the choice should be checked out with the person using an appropriate way.

• The person should be given time to think about and discuss the options.

• Access to other people should be made available for the person to discuss the options with, especially with people he/she trusts.

• Careful consideration should be given to when to give the information and where.

•The decision must be the person’s own voluntary decision.

•The person needs to be made aware that he/she can refuse consent or say no to options and that it is alright to change his/her mind.

Remember much of this will have been established during the assessment stage

Ensure the decision taken is clearly documented

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Holding a Best Interest meeting

If the person is assessed as not having capacity to consent you will need to hold a “Best Interest” meeting to make the decision on their behalf.

Things to consider when holding a Best Interest meeting:

• When making decisions in the person’s best interest it is important to reflect the following guidance from the department of health:- The only interests which you should take into account when deciding if particular treatment is appropriate are the person’s best interests. The courts have made clear that people’s ‘best interests’ are not limited to what would benefit them medically. Other factors, such as their general well being, their relationships with those close to them , the impact on the activities in their daily life and their spiritual and religious welfare should all be taken into account.

• People who lack capacity to consent or to refuse a particular treatment option may still express willingness or unwillingness to co-operate with what is being offered. Such preferences should always be taken into account when deciding whether the proposed care or treatment is genuinely in the person’s best interests.

• Ideally, decisions should be made which both those close to the person and the healthcare team agree are in the person’s best interests. If it proves impossible to reach such agreement over significant decisions, the courts can be asked to determine what is in the person’s best interests.

• You must never make assumptions that particular treatments are inappropriate just because the patient has a learning disability. This is discriminatory and unlawful.

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Holding a Best Interest meeting

• Where a decision to provide treatment is taken on the basis that this is in the person’s best interests, the standard consent form should not be completed. Instead, you should make a written record, either in the person’s notes or on a form for adults who are unable to consent, of the reasons for your decision and the involvement of those close to the person. Any disagreement between the clinical team and those close to the person should also be recorded.

• Practitioners may find themselves in a situation where they are making best interest decisions on behalf of another, for example, medical intervention. In such cases you are only providing best interest advice and the ultimate decision lies with the practitioner responsible for treatment. The responsible practitioner could be a nurse or a therapist as well as a doctor.

A best interest meeting would need a team including family, advocacy, health and social services staffThe meeting must:

• Allow / encourage the person to participate in decisions affecting him or her;• Consider the risks and benefits of different choices;• Take into account present or previously expressed wishes or Advanced Directives, including the factors the person would consider if they were able to do so (a record of simple choices made over time could indicate wishes where no information is available);• Ensure that any wishes expressed are not the result of undue influence;• Consider the views of significant family and / or others;• Choose the least invasive or restrictive option.

Other key factors to consider from ‘Valuing People’ include a person’s rights (human rights, freedomfrom discrimination), independence, choice and inclusion.

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Involving the person

If the person is assessed as not having capacity to consent you need to support them to contribute to the process of making the decision as much as they can or want to.

Things to consider when involving the person:

• Tell the person about the up-coming situation in a way he / she can understand:

Verbally (at appropriate language level)Using signsUsing photos / pictures / symbols / videoGoing on a visit, e.g. to hospital, new homeMeet people who will be involved, e.g. new staffGet familiar with equipment that will be used.Consider how often does the information need to be repeated.

• Make sure everyone in the new situation is aware of how the person communicates his / her feelings.

How does he / she show they are happy?How does he / she show they are in distress?How does he / she show when they have had enough?

• Consider what will help in the environment

Who should tell him / her? e.g. familiar person, advocate etcWhere will things take place? e.g. at home, at a clinic etc

Who will be with the person? e.g. family member, key worker, friend, advocate

What will help put the person at ease, e.g. music, toy, comfort object, own furniture

Food / drink available?When should he / she be told e.g. what time of the day, i.e. not

mornings, how soon after the event? 27



4. Record form

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Multi-agency assessment to make a decision: Record Form

1. About the person

Who has carried out this work?

When was this done?

What were the key findings? (identify sources of evidence)

2. About the decision


When was this done?


3. About the conditions


When was this done?


Who the decision is about:29


From what you have found out about the person, the decision and the conditions..

Can the person understand the relevant information?

Can the person retain the relevant information long enough to make

the decision?

Can the person manipulate (weigh up the pro’s and con’s) the information

to come to a decision?

Can the person communicate the decision and the reasons for it?

Who the decision is about: 30


YesMulti- agency team to ask :based on what we have found out is this person able to make this decision for themselves?List Team members:

Now record the agreed action plan for offering an informed choice…

Who?

When?

Where?

How?

Who the decision is about: 31


NoMulti- agency team to ask :based on what we have found out is this person able to make this decision for themselves?List Team members:

Best interest meeting date

What was decided to encourage the person to participate in decisions affecting him or her?

What risks and benefits of the different choices were identified?

Present or previously expressed wishes, including the factors the person would consider if they were able to do so?

How to ensure that any wishes expressed are not the result of undue influence?

The views of significant family and / or others?

The least invasive or restrictive option?

Record of any issues not agreed by the team

Who the decision is about:32



5. Other Help

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Reading

People involved in producing this document

Leads Bridget Cryer-Rolley Louise Talbott Gordon Walker

Others Pauline Ndigirwa Michelle Churchard-SmithPip Ostell Elaine PerkinsStephen Cook Sashi PilukeTracey Finnamore Reza KianiAlan Reynolds Lynne MooreMandy Clarkson Gill Gates

For more Information contact : Consent GroupBridget Cryer- Rolley, Louise Talbott, Gordon WalkerTel : 0116 225 5200

• ‘Making Decisions’ A guide for People with Learning Disabilities (DCA)• A Guide to the Mental Capacity Bill (DOH)• Mental Capacity Act A Code of Practice (DOH)• Seeking Consent: Working with People with Learning Disabilities (DOH)• Policy to Consent to Examination or Treatment (LPT)

You can access these on the appropriate websites

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Working with People with Learning Disabilities: Understanding and using the Mental Capacity Act June 2008.

Documents

mental capacity actjune

mental capacity act2

learning disabilities

vulnerable people

process confidential

introduction understanding

capacitya person

successa person