In the UK 40% of adults with learning disabilities (28% if problem behaviours are excluded) experience mental health problems at any point in time. An estimated 36% of children and young people (24% if problem behaviours are excluded) with learning disabilities (LD) experience mental health problems at any point in time.
NICE recently released guidelines called Mental health problems in people with learning disabilities: prevention, assessment and management to support health and social care services with identification, assessment and treatment of mental health problems in individuals with LD.
In this blog, we summarise the information contained in the full version, which is accompanied by helpful information on how to implement the guidelines in your workplace.
Key recommendations and findings
How this guideline fits with other guidelines
Mental health problems in people with learning disabilities: prevention, assessment and management is recommended to be used with the following documentation, including the additional NICE guidelines which relate to:
- Improving experience of care
- Intervention(s) for mental health problems with learning disabilities.
Organisation and delivery of care
Organising effective care:
A designated leadership team of multidisciplinary individuals should work with the individual who has a learning disability and the people who support them.
This team should ensure that care is:
- Person-centred and accessible to those using the services.
- Audited to ensure it is effective, inclusive and appropriate.
This team should ensure the care pathway:
- Covers all health, social and educational services and the role and responsibilities of each.
- There are shared protocols for information sharing with the individual and their families, as well as across services.
- Are focused on outcomes and consistency of care.
- Establish a clear link to other care pathways, including physical health.
The team should ensure plans are in place to support the health, social, education and recreational needs of children and young people in transition to adult services.
All care providers should ensure the care pathways:
- Provide access to all recommended interventions.
- State the responsibilities of all specialist services to ensure needs are met.
Acute inpatient treatment should be:
- As local to the individual as possible.
- Be delivered by staff with the appropriate skills and knowledge.
Staff coordination and communication
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 and the mental health problem (as well as any physical health problems).
All people with learning disabilities and a serious mental illness should be allocated a key worker who should:
- Coordinate and monitor all aspects of person centered care; including the care plan.
- Help services communicate with the person in a way that is accessible and meets their needs.
Staff training and supervision
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.
- Mental health problems may develop and present in different ways from people without learning disabilities and that the usual signs of a mental health problem may not be obvious.
- People with learning disabilities can develop mental health problems for the same reasons as people without learning disabilities.
- Mental health problems are commonly overlooked in people with learning disabilities.
- Where to refer and seek support for people with learning disabilities and suspected mental health problems.
All staff who provide training for others who support people with learning disabilities should be competent in doing so, and:
- Must receive regular supervision themselves.
- Ensure the training they deliver is up to date, relevant and reflects best practice.
- Monitor and evaluate the validity of the training they deliver; including outcome monitoring that involves the service user where possible.
Involving people with learning disabilities and their families
When communicating with people with learning disabilities who have a mental health problem, the guidelines recommend:
- Communication used is consistent with the preference of the individual and a person centred approach is taken to ensure information is given in a way that the individual may understand; this may include sign language, visual information, and easy-to-read documentation.
- Language should be clear, simple and concise and always check that person receiving the information understands it.
- The person with a disability and/or their family member should be given plenty of opportunity to communicate in the way they prefer and it should be checked that they have communicated all they have wanted to.
All services and associated staff should ensure they have followed the Mental Capacity Act (MCA) when assessing the responsibility to consent to mental health support and intervention. This should be done on a case-by-case basis.
Staff who deliver any interventions should ensure the individual is fully informed of all the relevant information they need, including;
- Pros and cons of each intervention
- The purpose and outcome
- Answers to any queries or concerns they may have
- Understand the process from beginning to end
- Principals of the MCA should be followed as well, including communicating this information in a way that is suitable to the individuals and allowing them enough time to consider choices.
- Involve family/carers wherever possible if consented to by an individual who has capacity.
- Ensure family members can also understand and access all the relevant NICE guidance.
When providing support for families and carers:
- Let carers know about their right to a carer’s assessment and short breaks/respite, and how to get these.
- Hold in mind the potential impact of living with or caring for someone with a learning disability and a mental health problem.
- Help them to access advocacy and support groups for themselves.
- Provide skills training and emotional support or help them to access this elsewhere, so that they can take part in the interventions.
- If carers experience emotional distress, we should help them access their own help, either through us or a referral to an appropriate service.
Social and physical environment interventions
Services should consider the impact of environment on the mental wellbeing of children and young people when care planning:
- Provide appropriate, positive education environments.
- If changes in care placement are needed, ensure the new setting fits the needs of the person.
- Give extra thought to the very high risk of poor mental wellbeing for looked after children and provide support to the young people and their carers to attempt to reduce this and the risk of breakdown.
Services should consider the impact of the environment on the wellbeing of adults when care planning:
- Help people live where and with whom they want
- Help families stay involved in the person’s life if appropriate
- Help people to do what they want or need
- Plan for and help people with any big changes to where they live or who they live with.
Annual Health Check
The guidelines recommend:
- All people with a learning disability have an annual health check that includes physical and emotional health and well-being.
- Family members/carers should be involved in this process if the person with a learning disability needs support.
- During annual health checks for people with Down’s Syndrome, additional information should be gathered to determine whether screening is required for dementia.
Identification and referral
- Staff should consider if a person shows any changes in behaviour; this could be a sign of a mental health problem.
- Staff should consider using identification tools recommended by NICE.
- If staff suspect a mental health problem, they should conduct a triage assessment in the first instance to gain a formulation of relevant information, including a description of the problem and an action plan.
- Serious mental illness or suspected dementia should be referred to a psychiatrist.
This should be coordinated by someone with expertise in mental health and working with people with learning disabilities, and organised with:
- The individual, in a place familiar to them and help for them to prepare if needed.
- Their carers or family members and anyone else the individual wants involved.
- Other professionals who might be of use.
- It is important to speak with the individual alone to find out if they want to tell you something without their carers or family present.
Before an assessment takes place:
- Agree a clear objective and explain this to all involved
- Explain what will happen and how long it will take
- Answer any questions.
When conducting the assessment, remember that a physical health condition, sensory or cognitive impairment may mask, hide or cause the distress being assessed. Remember to account for the person’s distress, understanding, living and social environment and the individual strengths and needs.
- During the assessment, remember to assess all potential causes.
- Think about how the current concerns developed, what is keeping the concerns around, and what is going well for the individual.
- Identify potential interventions, including potential harms and benefits.
- Consider how to deliver the interventions and what might get in the way.
- Give the person and their carers a summary of the assessment in a way that they can understand and that details the care plan.
- Ensure that the person and their carers have another chance to discuss the assessment.
- Consider further assessment if new information becomes available or there are differences of opinion.
NICE recommends using tools that have been developed or adapted for use with someone with a learning disability. If none exist, interpretation should proceed with caution and several specific tools are recommended:
- Developmental Behavior Checklist – parent version
- Strengths and Difficulties Questionnaire
- Glasgow Depression Scale.
If assessing for dementia use:
- A measure of symptoms, such as Dementia Questionnaire for People with Learning Disabilities or the Downs Syndrome Scale or Dementia Screening Questionnaire for Individuals with Intellectual Disabilities.
- A measure of cognitive function
- A measure of adaptive function.
The guide is clear that a baseline assessment of adaptive function should be completed for every adult with Down’s syndrome.
Undertake a comprehensive risk assessment and if needed develop a management plan, and review these regularly.
Assessment during a crisis:
An initial assessment should include:
- Assessment of mental health
- Risk assessment.
Identify interventions that can help the problem that caused the crisis, minimise any risks, and stabilise the individual and their environment.
Produce a crisis plan that sets out the least restrictive option to reduce the likelihood of future crisis and what to do if a crisis occurs.
A mental health care plan should be developed with the individual and their carers and combined with their other care plans. These should be based on the formulation and include:
- The person’s goals
- The plan for intervention
- An agreed meaningful outcome measure
- Early warning signs
- Risk and crisis plans
- Steps to stay well in the future.
The plan should include what everyone will do and when it will be reviewed. This needs to be shared with all relevant people.
Refer to other NICE guidelines for specific interventions.
Specific psychological interventions
- Adapted CBT for depression and subthreshold symptoms for people with mild LD
- Relaxation therapy for anxiety symptoms
- Graded exposure for anxiety or phobia symptoms
- Training programmes for parents of children with LD to help promote wellbeing for the child and support the carers.
Again, refer to other NICE guidelines for specific problems.
- Monitor and review benefits and side effects
- Choose the lowest effective dose, noting the potential side-effects and the person’s possible problems in reporting them.
- When prescribing medicine, record what information was given to the person and their support network, review dates, plans for reduction or discontinuation of the medication, and details of all the medication the person is taking.
- If someone is taking an antipsychotic and is not experiencing psychotic symptoms consider reducing or stopping these drugs and how the person is getting on. Consider referring to a psychiatrist who works with people with learning disabilities, and if you are not going to stop them document your reasons for not stopping them on an annual basis.
- When changing drugs only change one at a time and watch out for discontinuation or interaction effects.
- All people supporting someone with a learning disability and mental health problem should actively attempt to engage then in their local community and meaningful recreational activities.
- Encourage the person they support to seek a paid or voluntary job where appropriate.
- Support the person to find and secure this employment where needed, including helping them to complete applications and prepare/attend interviews.
- Health and social care professionals should ensure that sensory and physical impairments are supported to facilitate employment for the individual and that the place of employment is aware of any adaptions they may need to make under the Equality Act 2010.
In conclusion I feel that these guidelines cover a wide range of situations and considerations that health and social care services may come across when supporting someone with a learning disability who may experience a mental health problem. I feel that whilst the guidelines in some places seem to spell out the obvious actions needed, this is also a good point of reference for all levels of staff to ensure they are following best practice guidance.
One concern would be the length of the guidelines and whether staff would actively feel able to read every point before supporting the individual. Finally, accessibility may be an issue for some, as the document is lengthy and can only be accessed online. There is no easy-read version available which would make it difficult for the person with a learning disability and/or their family members to digest and consider the information as they suggest in the relevant sections.
I agree that this is an expansive guideline that attempts to provide a large amount of information. I also agree that the guideline does seem, at times, to spell out the obvious best practice. As a Clinical Psychologist I am disheartened that the guideline seems to focus on a diagnostic framework, and not on a formulation based approach, which considers what has happened to the person and how their distress fits within this. This can open up different ways of considering an individual’s distress and so may lead to a more individualised care plan based on the meaning of the distress. This would be in line with the NICE guidance around behaviour that is challenging for someone’s support network.
NICE (2016) Mental health problems in people with learning disabilities: prevention, assessment and management. NICE guideline [NG54] September 2016.