People have the right to be involved in discussions and make informed decisions about their care, as described in NICE's information on making decisions about your care.
Making decisions using NICE guidelines explains how we used words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off-label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.
Health and social care professionals should follow our general guidelines for people delivering care:
Use this guideline with:
recommendations for improving the experience of care for children and young people in the NICE guidelines on specific mental health problems
the NICE guideline on challenging behaviour and learning disabilities if relevant.
Use this guideline with the NICE guidelines on specific mental health problems and other NICE guidelines on mental health services. Take into account:
differences in the presentation of mental health problems
the degree of learning disabilities
the treatment setting (for example, primary or secondary care services, mental health or learning disabilities services, in the community or the person's home)
interventions specifically for people with learning disabilities (see the section on social and physical environment interventions and the sections on psychological, pharmacological and occupational interventions).
A designated leadership team of healthcare professionals, educational staff, social care practitioners and health and local authority commissioners should develop and implement service delivery systems in partnership with people with learning disabilities and mental health problems and (as appropriate) their family members, carers, self-advocates or care workers.
The designated leadership team should ensure that care is:
person-centred and integrated within a care programme
negotiable, workable and understandable for people with learning disabilities and mental health problems, their family members, carers or care workers, and staff
accessible and acceptable to people using the services
responsive to the needs and abilities of people with learning disabilities, and that reasonable adjustments (in line with the Equality Act 2010) are made if needed
regularly audited to assess effectiveness, accessibility and acceptability.
The designated leadership team should ensure that care pathways:
cover all health, social care, support and education services, and define the roles and responsibilities of each service
have designated staff who are responsible for coordinating:
how people are involved with a care pathway
transition between services within and across different care pathways
maintain consistency of care
have protocols for sharing information:
with the person with learning disabilities and a mental health problem and their family members, carers or care workers (as appropriate)
with other staff (including GPs) involved in the person's care
are focused on outcomes (including measures of quality, service user experience and harm)
establish clear links (including access and entry points) to other care pathways (including those for physical health problems).
The designated leadership team, together with health and social care providers, should ensure that care pathways:
provide access to all NICE-recommended interventions for mental health problems
clearly state the responsibilities of specialist learning disabilities and specialist mental health services to ensure people's needs are met.
For people with learning disabilities who need acute inpatient treatment for a serious mental illness, provide treatment:
within a locally available service where possible and
with staff who are skilled and knowledgeable in the care and treatment of mental health problems in people with learning disabilities.
Staff working with people with learning disabilities and mental health problems should ensure they are fully informed about:
the nature and degree of the learning disabilities
the nature and severity of the mental health problem, and any physical health problems (including sensory impairments).
All people with learning disabilities and a serious mental illness should have a key worker who:
coordinates all aspects of care, including safeguarding concerns and risk management
helps services communicate with the person and their family members, carers or care workers (as appropriate) clearly and promptly, in a format and language suited to the person's needs and preferences
monitors the implementation of the care plan and its outcomes.
Health, social care and education services should train all staff who may come into contact with people with learning disabilities to be aware:
that people with learning disabilities are at increased risk of mental health problems
that mental health problems may develop and present in different ways from people without learning disabilities, and the usual signs or symptoms may not be observable or reported
that people with learning disabilities can develop mental health problems for the same reasons as people without learning disabilities (for example, because of financial worries, bereavement or relationship difficulties)
that mental health problems are commonly overlooked in people with learning disabilities
where to refer people with learning disabilities and suspected mental health problems.
Health and social care services should ensure that staff who deliver interventions for people with learning disabilities and mental health problems are competent, and that they:
receive regular high-quality supervision
deliver interventions based on relevant manuals, if available
evaluate adherence to interventions
take part in the monitoring of their practice (for example, by using video and audio recording, external audit and scrutiny).
Health and social care staff who deliver interventions for people with learning disabilities and mental health problems should consider using routine sessional outcome measures, including service-user-reported experience measures.
When providing support to family members (including siblings) and carers:
recognise the potential impact of living with or caring for a person with learning disabilities and a mental health problem
explain how to access disability-specific support groups for family members or carers.
If a family member or carer also has an identified mental health problem, offer:
interventions in line with the NICE guidelines on specific mental health problems or
referral to a mental health professional who can provide interventions in line with NICE guidelines.
Health, social care and education services should consider the impact of the social and physical environment on the mental health of children and young people with learning disabilities when developing care plans, and:
provide positive educational environments that are appropriate to their needs
when care placements (such as birth family to foster care, foster care to adoptive placement, home to residential school/college) are required, minimise the risk of placement breakdown by taking particular care to fit these to the needs of the person.
give special consideration and support to looked-after children and young people with learning disabilities and their foster parents or care workers, to reduce the child or young person's very high risk of developing mental health problems, and the risk of changes in their home and carers (see the NICE guideline on looked-after children and young people).
Health, social care and education services should consider the impact of the social and physical environment on the mental health of adults with learning disabilities when developing care plans,and:
support people to live where and with whom they want
encourage family involvement in the person's life, if appropriate
support people to get involved in activities that are interesting and meaningful to them
plan for and help people with any significant changes to their living arrangements.
The following recommendations on annual health checks for people with learning disabilities build on recommendation 1.2.1 in the NICE guideline on challenging behaviour and learning disabilities, which relates to the provision of annual physical checks by GPs to all people with learning disabilities.
GPs should offer an annual health check using NHS England's learning disability annual health check electronic clinical template to all adults with learning disabilities, and all children and young people with learning disabilities who are not having annual health checks with a paediatrician.
Involve a family member, carer or care worker (as appropriate), or a healthcare professional or social care practitioner who knows the person well, in the annual health check. Take into account that more time may be needed to complete health checks with people with learning disabilities.
Include the following in annual health checks:
a mental health review, including any known or suspected mental health problems and how they may be linked to any physical health problems
a physical health review, including assessment for the conditions and impairments which are common in people with learning disabilities
a review of all current interventions, including medication and related side effects, adverse events, interactions and adherence
an agreed and shared care plan for managing any physical health problems (including pain).
During annual health checks with adults with Down's syndrome, ask them and their family members, carers or care workers (as appropriate) about any changes that might suggest the need for an assessment of dementia, such as:
any change in the person's behaviour
any loss of skills (including self-care)
a need for more prompting in the past few months.
Staff and others caring for people with learning disabilities should consider a mental health problem if a person with learning disabilities shows any changes in behaviour, for example:
loss of skills or needing more prompting to use skills
social withdrawal
irritability
avoidance
agitation
loss of interest in activities they usually enjoy.
Staff should consider using identification questions (adjusted as needed) as recommended in the NICE guidelines on specific mental health problems to identify common mental health problems in people with learning disabilities.
Paediatricians should explain to parents of children identified with learning disabilities that mental health problems are common in people with learning disabilities, and may present in different ways.
If a mental health problem is suspected in a person with learning disabilities, staff should conduct a triage assessment to establish an initial formulation of the problem. This should include:
a description of the problem, including its nature, severity and duration
an action plan including possible referral for further assessment and interventions.
Refer people with learning disabilities who have a suspected serious mental illness or suspected dementia to a psychiatrist with expertise in assessing and treating mental health problems in people with learning disabilities.
A professional with expertise in mental health problems in people with learning disabilities should coordinate the mental health assessment, and conduct it with:
the person with the mental health problem, in a place familiar to them if possible, and help them to prepare for it if needed
the family members, carers, care workers and others that the person wants involved in their assessment
other professionals (if needed) who are competent in using a range of assessment tools and methods with people with learning disabilities and mental health problems.
When conducting mental health assessments, be aware:
that an underlying physical health condition may be causing the problem
that a physical health condition, sensory or cognitive impairment may mask an underlying mental health problem
that mental health problems can present differently in people with more severe learning disabilities.
When conducting mental health assessments, take into account the person's living arrangements and settings where they receive care.
During mental health assessments:
establish specific areas of need to focus on
assess all potential psychopathology, and not just the symptoms and signs that the person and their family members, carers or care workers first report
describe the nature, duration and severity of the presenting mental health problem
take into account the person's cultural, ethnic and religious background
review psychiatric and medical history, past treatments and response
review physical health problems and any current medication, and refer to other specialists for review if needed
review the nature and degree of the learning disabilities, and if relevant the person's developmental history
assess for problems that may be associated with particular behavioural phenotypes (for example, anxiety in people with autism and psychosis in people with Prader–Willi syndrome), so that they can be treated
assess the person's family and social circumstances and environment, and recent life events
assess the level of drug or alcohol use as a potential problem in itself and as a factor contributing to other mental health problems
establish or review a diagnosis using:
a classification system such as DSM-5 or ICD-10, or those adapted for learning disabilities (for example the Diagnostic Manual – Intellectual Disability [DM-ID] or Diagnostic Criteria for Psychiatric Disorders for Use with Adults with Learning Disabilities/Mental Retardation [DC-LD]) or
problem specification
assess whether a risk assessment is needed (see recommendation 1.7.14).
Assess recent changes in behaviour using information from family members, carers, staff or others involved in the assessment as well as information from relevant records and previous assessments. Take into account the nature, quality and length of their relationship with the person.
Use the results of the mental health assessment to develop a written statement (formulation) of the mental health problem, which should form the basis of the care plan (see recommendation 1.7.19) and cover:
an understanding of the nature of the problem and its development
precipitating and maintaining factors
any protective factors
the potential benefits, side effects and harms of any interventions
the potential difficulties with delivering interventions
the adjustments needed to deliver interventions
the impact of the mental health problem and associated risk factors on providing care and treatment.
Consider conducting a further assessment that covers any areas not explored by the initial assessment, if:
new information emerges about the person's mental health problem or
there are significant differences between the views of the person and the views of their family members, carers, care workers or staff about the problems that the assessment has focused on.
During any mental health assessment:
consider using tools that have been developed or adapted for people with learning disabilities and
take cost into account if more than one suitable tool is available.
If using tools that have not been developed or adapted for people with learning disabilities, take this into account when interpreting the results.
When conducting an assessment with a child or young person with learning disabilities, consider using tools such as the Developmental Behavior Checklist – parent version (DBC-P) or the Strengths and Difficulties Questionnaire (SDQ).
When assessing depressive symptoms in an adult with learning disabilities, consider using a formal measure of depression to monitor change over time, such as the Glasgow Depression Scale (the self-report for people with milder learning disabilities or the carer supplement for people with any degree of learning disabilities).
Consider supplementing an assessment of dementia with an adult with learning disabilities with:
measures of symptoms, such as the Dementia Questionnaire for People with Learning Disabilities (DLD), the Down Syndrome Dementia Scale (DSDS) or the Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID)
measures of cognitive function to monitor changes over time, such as the Test for Severe Impairment (TSI)
measures of adaptive function to monitor changes over time.
Complete a baseline assessment of adaptive behaviour with all adults with Down's syndrome.
When conducting risk assessments with people with learning disabilities and mental health problems, assess:
risk to self
risk to others (including sexual offending)
risk of self-neglect
vulnerability to exploitation
likelihood and severity of any particular risk
potential triggers, causal or maintaining factors
whether safeguarding protocols should be implemented.
If indicated by the risk assessment, develop a risk management plan with the person and their family members, carers or care workers (as appropriate).
Risk management plans should:
set out individual, social or environmental interventions to reduce risk
be communicated to family members, carers or care workers (as appropriate) and all relevant staff and agencies.
Risk assessments and resulting risk management plans should be reviewed regularly and adjusted if risk levels change.
Conduct an initial assessment for people who are experiencing a mental health crisis, which should:
include an assessment of the person's mental health
include a risk assessment (see recommendations 1.7.14 to 1.7.17)
include identification of interventions to:
help address the problem that caused the crisis
minimise any associated risks
bring stability to the individual and their immediate environment
produce a crisis plan that sets out (using the least restrictive options possible) how to reduce the likelihood of further crises, and what to do if the person has another crisis.
Develop a mental health care plan with each person with learning disabilities and a mental health problem and their family members, carers or care workers (as appropriate), and integrate it into their other care plans.
Base mental health care plans on the written statement (formulation) and include in them:
goals agreed with the person and the steps to achieve them
treatment decisions
agreed outcome measures that are realistic and meaningful to the person, to monitor progress
early warning signs of relapse or exacerbation of symptoms, if known
risk and crisis plans, if needed (see recommendations 1.7.14 to 1.7.18)
steps to minimise future problems.
Ensure that the mental health care plan sets out the roles and responsibilities of everyone involved in delivering it, and that:
the person can easily access all interventions and services in the plan
it is communicated to everyone involved, including the person and their family members, carers or care workers (as appropriate)
there is an agreement on when the plan will be reviewed.
For psychological interventions for mental health problems in people with learning disabilities, refer to the NICE guidelines on specific mental health problems and take into account:
the principles for delivering psychological interventions (see recommendations 1.8.2 to 1.8.4) and
the specific interventions recommended in this guideline (see recommendations 1.8.5 to 1.8.9).
Use the mental health assessment to inform the psychological intervention and any adaptations to it, and:
tailor it to their preferences, level of understanding, and strengths and needs
take into account any physical, neurological, cognitive or sensory impairments and communication needs
take into account the person's need for privacy (particularly when offering interventions on an outreach basis)
agree how it will be delivered (for example, face-to-face or remotely by phone or computer), taking into account the person's communication needs and how suitable remote working is for them.
If possible, collaborate with the person and their family members, carers or care workers (as appropriate) to:
develop and agree the intervention goals
develop an understanding of how the person expresses or describes emotions or distressing experiences
agree the structure, frequency, duration and content of the intervention, including its timing, mode of delivery and pace
agree the level of flexibility needed to effectively deliver the intervention
agree how progress will be measured and how data will be collected (for example, visual representations of distress or wellbeing).
Be aware that people with learning disabilities might need more structured support to practise and apply new skills to everyday life between sessions. In discussion with the person, consider:
providing additional support during meetings and in the planning of activities between meetings
asking a family member, carer or care worker to provide support and assistance (such as reminders) to practise new skills between meetings.
Consider cognitive behavioural therapy, adapted for people with learning disabilities (see recommendation 1.8.2 on intervention adaptation methods), to treat depression or subthreshold depressive symptoms in people with milder learning disabilities.
Consider relaxation therapy to treat anxiety symptoms in people with learning disabilities.
Consider using graded exposure techniques to treat anxiety symptoms or phobias in people with learning disabilities.
Consider parent training programmes specifically designed for parents or carers of children with learning disabilities to help prevent or treat mental health problems in the child, and to support carer wellbeing.
Parent training programmes should:
be delivered in groups of parents or carers
be accessible (for example, take place outside normal working hours or in community settings with childcare facilities)
focus on developing communication and social functioning skills
typically consist of 8 to 12 sessions lasting 90 minutes
follow the relevant treatment manual
use all of the necessary materials to ensure consistent implementation of the programme
seek parent feedback.
For pharmacological interventions for mental health problems in people with learning disabilities, refer to the NICE guidelines on specific mental health problems and take into account the principles for delivering pharmacological interventions (see recommendations 1.9.2 to 1.9.8).
Only specialists with expertise in treating mental health problems in people with learning disabilities should start medication to treat a mental health problem in:
adults with more severe learning disabilities (unless there are locally agreed protocols for shared care)
children and young people with any learning disabilities.
Before starting medication for a mental health problem in children, young people or adults with learning disabilities:
take account of:
potential medication interactions
the potential impact of medication on other health conditions
the potential impact of other health conditions on the medication
when necessary consult with specialists (for example, neurologists providing epilepsy care when prescribing antipsychotic medication that may lower the seizure threshold), to minimise possible interactions
assess the risk of non-adherence to the medication regimen or any necessary monitoring tests (for example, blood tests), and the implications for treatment
establish a review schedule to reduce polypharmacy
provide support to improve adherence
assess whether support from community and learning disabilities nurses is needed for physical investigations (such as blood tests)
agree monitoring responsibilities, including who will carry out blood tests and other investigations, between primary and secondary care.
Monitor and review the benefits and possible harms or side effects, using agreed outcome measures and taking into account communication needs. If stated in the relevant NICE guideline, use the timescales given for the specific disorder to inform the review, and adjust it to the person's needs.
When deciding the initial dose and subsequent increases, aim for the lowest effective dose. Take account of both potential side effects and difficulties the person may have in reporting them, and the need to avoid sub-therapeutic doses that may not treat the mental health problem effectively.
Prescribers should record:
a summary of what information was provided about the medication prescribed, including side effects, to the person and their family members, carers or care workers (as appropriate) and any discussions about this
when the medication will be reviewed
plans for reducing or discontinuing the medication, if appropriate
full details of all medication the person is taking, including the doses, frequency and purpose.
For people with learning disabilities who are taking antipsychotic drugs and not experiencing psychotic symptoms:
consider reducing or discontinuing long-term prescriptions of antipsychotic drugs,
review the person's condition after reducing or discontinuing a prescription
consider referral to a psychiatrist experienced in working with people with learning disabilities and mental health problems
annually document the reasons for continuing the prescription if it is not reduced or discontinued.
When switching medication, pay particular attention to discontinuation or interaction effects that may occur during titration. Only change one drug at a time, to make it easier to identify these effects.
In keeping with the preferences of the person with learning disabilities and mental health problems, all staff should support them to:
engage in community activities, such as going to a library or sports centre
access local community resources such as libraries, cinemas, cafes and leisure centres
take part in leisure activities, such as hobbies, which are meaningful to the person.
Reasonable adjustments may be needed to do this (in line with the Equality Act 2010), such as a buddy system, transport, or advising local facilities on accessibility.
Actively encourage adults with learning disabilities (with or without a mental health problem) to find and participate in paid or voluntary work that is meaningful to them, if they are able.
Consider providing practical support to adults with learning disabilities (with or without a mental health problem) to find paid or voluntary work, including:
preparing a CV
identifying personal strengths and interests
completing application forms
preparing for interviews
accompanying the person to interviews
completing any pre-employment checks.
Health and social care services should take account of an adult or young person's sensory, physical, cognitive and communication needs and the severity of their mental health problem (if any), and consider:
helping them to identify and overcome any possible challenges during employment
appointing supported employment workers to provide ongoing support to adults with learning disabilities and their employers
providing information and guidance to potential employers about the benefits of recruiting people with learning disabilities
assisting employers in making reasonable adjustments to help them to work (in line with the Equality Act).
A person who provides unpaid support to someone who is ill, having trouble coping or has disabilities.
Defined in this guideline as the ways different services interact with each other, and how people access and move between them.
A person who provides paid support to someone who is ill, having trouble coping or has disabilities, in a variety of settings (including residential homes, supported living settings and day services).
Aged 0 to12 years.
A team of healthcare professionals, educational staff, social care practitioners and health and local authority commissioners. They are responsible for developing and implementing service delivery systems.
A key worker (also known as a care or case coordinator) is a central point of contact for the person with a mental health problem, family members, carers and the services involved in their care. They are responsible for helping the person and family members or carers to access services and for coordinating the involvement of different services. They ensure clear communication between all people and services and have an overall view of the person's needs and the requirements of their care plan.
Learning disabilities are commonly divided into 'mild', 'moderate', 'severe' and 'profound', but these categories are based on IQ and most UK health and social care services do not measure this. Therefore, this guideline uses the terms 'milder learning disabilities' (approximating to mild and moderate learning disabilities that are often defined as an IQ of 35 to 69 and impairment of adaptive functioning with onset in childhood) and 'more severe learning disabilities' (approximating to severe and profound learning disabilities that are often defined as an IQ of 34 or below with impairment of adaptive functioning with onset in childhood).
All people with learning disabilities:
need additional support at school
need support in some areas of adult life, such as budgeting, planning, time management, and understanding complex information
need more time to learn new skills than people who don't have learning disabilities.
People with milder learning disabilities:
may be able to live independently and care for themselves, managing everyday tasks and working in paid employment
can often communicate their needs and wishes
may have some language skills
may have needs that are not clear to people who do not know them well.
People with more severe learning disabilities are more likely to:
need support with daily activities such as dressing, washing, food preparation, and keeping themselves safe
have limited or no verbal communication skills or understanding of others
need support with mobility
have complex health needs and sensory impairments.
Defined in this guideline as: severe and incapacitating depression or anxiety, psychosis, schizophrenia, bipolar disorder or schizoaffective disorder.
Healthcare professionals and social care practitioners, including those working in community teams for adults, children or young people (such as psychologists, psychiatrists, social workers, speech and language therapists, nurses, behavioural analysts, occupational therapists, physiotherapists and pharmacists); and education staff.
Aged 13 to 17 years.