Mental health and learning disability: signs, assessment and support in the UK

The NHS explains that a learning disability affects the way a person learns new things throughout their life, and is different for everyone. Some people can work, have relationships, live alone and get qualifications, while others need more support throughout their life. Intellectual disability is the term used in some international classifications and research; in UK health and social care the usual term is learning disability, which this guide uses.

NICE guideline NG54 covers preventing, assessing and managing mental health problems in people with learning disabilities in health, social care, education and criminal justice settings. It says staff should be aware that people with learning disabilities are at increased risk of mental health problems, that these may present in different ways, and that they are commonly overlooked.

NICE says people with learning disabilities can develop mental health problems for the same reasons as anyone else, for example financial worries, bereavement or relationship difficulties, and it tells services to use its guidelines on specific mental health problems, taking differences in presentation into account.

Because someone may not be able to describe how they feel, changes in behaviour are often the main clue. NICE says staff and others caring for a person with learning disabilities should consider a mental health problem if there are changes in behaviour such as the following.

• Loss of skills, or needing more prompting to use skills.

• Social withdrawal or avoidance.

• Irritability or agitation.

• Loss of interest in activities they usually enjoy.

NICE says mental health problems are commonly overlooked in people with learning disabilities, and that the usual signs or symptoms may not be observable or reported. When distress or behaviour change is put down to the learning disability itself, a treatable condition can go unrecognised; this is often called diagnostic overshadowing.

Pain, physical illness, medicine side effects, sensory problems and changes in routine, living arrangements or staff can look like mental health problems and need to be checked too. The NHS says people with a learning disability often have poorer physical and mental health than other people, which does not need to be the case.

For adults with Down's syndrome, NICE advises asking at annual health checks about changes that might suggest the need for an assessment of dementia, such as a change in behaviour, loss of skills including self-care, or a need for more prompting in recent months.

Speak to the GP, the community learning disability team or the person's key worker if you notice a change that lasts more than a couple of weeks, or any change in sleep, eating, mood or behaviour that is out of character. NICE says that if a mental health problem is suspected, staff should conduct a triage assessment to establish an initial formulation of the problem, with an action plan including possible referral.

Immediate danger, thoughts of suicide, serious self-harm or sudden severe confusion need urgent help: call 999 or go to A&E, or contact NHS 111. Sudden confusion can have physical causes such as infection and needs to be assessed as soon as possible.

NICE says that for people with suspected serious mental illness or dementia, referral should be to a psychiatrist with expertise in assessing and treating mental health problems in people with learning disabilities. Care should be person-centred, with reasonable adjustments in line with the Equality Act 2010, and staff should be informed about the degree of learning disability, the mental health problem and any physical health problems including sensory impairments.

NICE recommends that all people with learning disabilities and a serious mental illness should have a key worker who coordinates care, including safeguarding and risk management, and helps services communicate in a format suited to the person. Family members and carers should be involved where appropriate, and offered support of their own.

NICE says to use its guidelines on specific mental health problems, taking into account differences in presentation, the degree of learning disability and the setting, and to use psychological, pharmacological and occupational interventions adapted for people with learning disabilities. In practice, this may mean longer or shorter sessions, more visual or easy-read materials, involving carers, and careful review of any medicines, with the aim of using the lowest effective doses.

NICE also asks services to consider the social and physical environment, supporting people to live where and with whom they want, encouraging family involvement and meaningful activities, and planning for and helping with significant changes to living arrangements. For children and young people it highlights positive educational environments and extra support for looked-after children.

The NHS says it is important that everyone over the age of 14 who is on their doctor's learning disability register has an annual health check. It is free, and you do not have to be ill. A doctor or nurse does a physical check-up, may take urine or blood tests, talks about staying well, asks about conditions that are more common with a learning disability such as epilepsy, constipation, swallowing problems and eyesight or hearing, reviews medicines and vaccinations, and checks how you are feeling.

NICE says the health check should include a mental health review, including any known or suspected mental health problems and how they may be linked to physical health, and a review of all current interventions including medicines and side effects. If a practice has not offered one, the NHS suggests asking, or asking the community learning disability team for help.

Keeping a simple diary of sleep, appetite, mood and behaviour changes, with dates, helps the team see patterns. Take a one-page profile or communication passport to appointments, and ask for reasonable adjustments such as a longer appointment or a quieter room.

NICE asks services to recognise the potential impact of living with or caring for a person with a learning disability and a mental health problem, and to explain how to access disability-specific support groups for family members and carers.