Supporting People with Complex Needs and Specific Conditions

Anyone with a complex mental health need should be in receipt of specialist support and treatment from a community mental health service. This is normally a Community Mental Health Team (CMHT) consisting of a Clinical Psychiatrist, Clinical Psychologist, Community Psychiatric Nurses and Healthcare Assistants.

If for some reason a person being supported is not being supported by a mental health team, take steps to enable them to access it. The referral to a mental health service can only normally be made by a GP, so this may involve contacting the person’s GP on their behalf (subject to normal consent rules).

A mental health professional should:

1. Support the service to understand risks and develop strategies;
2. Make sure staff know how to recognise a deterioration in mental health;
3. Make sure staff know when to seek emergency intervention and when to contact the CMHT;
4. Be available to provide advice and support to staff as needed.

Any instructions given by mental health professionals should always be followed. Changes should not be made without their agreement.

The NHS website can help locate an emergency 24hour mental health advice service in the local area.

See: Find a local NHS urgent mental health helpline

If the person appears to have rapidly deteriorating mental health needs, their community mental health team should be contacted as a matter of urgency. They can arrange to visit the person, assess needs and amend treatment as necessary.

However, if the person needs immediate support with their mental health do not wait for the community mental health team to be available. Call 999 and explain what is happening. This will enable the right emergency service to be dispatched.

Police

If the person is at an immediate risk of harm, or of hurting others, the police will normally attend and remove them to a place of safety. Once safe, an Approved Mental Health Professional (AMHP) can carry out an assessment under the Mental Health Act 1983 to determine whether they should be admitted to a mental health hospital (sectioned).

Sometimes, the police will work jointly with a local mental health service and attend with a mental health nurse to try and avoid the need to remove the person or section them. Instead, the mental health nurse will try to take steps to manage the risk and de-escalate the situation. Once the immediate risk is reduced, the person can then be supported by the community mental health team.

Paramedics

If the risk of harm is not immediate, paramedics will normally attend. This can result in the person being taken to A & E, where their mental health needs can be formally assessed by an AMHP. Most A & E departments have direct links to the AMHP service to make these arrangements.

The first thing to check is that all the person’s care and support needs are being met as per their individual care or support plan. Unmet needs can lead to complex behaviour triggered by things like hunger, thirst, discomfort, boredom, poor communication etc.

Complex behaviour may be a response to physical pain or illness. If it is not clear what may be triggering the behaviour, steps should be taken to contact the person’s GP as soon as possible so that illness can be ruled out (or treated).

To support a person with complex behaviour, it is essential to understand the cause or causes. This normally involves using an ABC chart to record each incident.

Recording the behaviour enables patterns to emerge:

• Specific triggers, such as the actions or presence of a particular individual or potential side effect of medication;
• Any wider triggers, such as being hungry, tired or bored;
• Environmental factors, such as a TV programme, music;
• The situations when the behaviour is most likely;
• Staff approaches that reduce or intensify the behaviour;
• The function that the behaviour is serving (SEAT).

ABC chart evidence should be used to develop a behaviour support plan. Depending on the level of risk to the person or others, a Clinical Psychologist may be best placed to develop the plan after reviewing the recorded evidence.

For further information about behaviour support plans and complex behaviours, see:

The Challenging Behaviour Foundation: Positive behaviour support planning

Rule number one is 'stay calm'. Any panic or extreme reactions by staff can quickly escalate complex behaviours or upset other people in the vicinity.

If there is a behaviour support plan in place, the strategies in the plan should be implemented.

If there is no behaviour support plan (or the strategies in the plan are not working), the response should be very much determined by the individual triggers that the person is known to have. You do not want to make the situation worse by responding in a way that will increase anxiety, anger etc.

Remember, the most important thing is always to keep people being supported as safe from harm as possible.

Non-physical intervention

Non-physical interventions are ‘hands-off’ interventions.

Some things to try may include:

• Positive language - do not ‘tell someone off’ or reprimand them;
• If the person is upset, they may find appropriate touch calming and reassuring;
• Offer positive activities and experiences as a distraction;
• Play calming music;
• Offer a drink or something to eat;
• Use humour if appropriate, but make sure the person does not think you find their frustration funny or are laughing at them;
• Support other people in the area to move to a safer space.

Physical interventions

Physical interventions are ‘hands-on’ interventions.

Physical interventions should never be planned to take place in advance. They should only take place when non-physical interventions have not worked and a failure to intervene would leave the person or others at a high risk of harm.

The level of physical intervention used should be the least restrictive possible, and never more than is necessary to keep people safe.

During a physical intervention staff must do everything possible to prevent injury or distress and to maintain the person’s dignity and privacy.

Physical interventions should not be used routinely.

If the use of physical intervention increases, expert advice from a Clinical Psychologist should be sought to develop or review a behaviour support plan.

PRN anti-psychotic medication and restraint should only ever be used as a last resort when there is no other way to keep people safe.

Neither PRN medication nor restraint should be used routinely to manage or prevent complex behaviour.

This is a severe deprivation of liberty.

If the use of PRN medication or restraint increases, expert advice from a Clinical Psychologist should be sought to develop or review a behaviour support plan. 

Risks around complex behaviour should be assessed in the same way as other risks.

See: Risk Assessment (person-centred)

See: Assessing and Monitoring Health and Safety Risks

See: Personal Safety and Wellbeing

If incidents of complex behaviour cause any harm to the person or to others, they must be recorded, reported and investigated in line with relevant processes.

See: Accidents, Injuries and Incidents

If the incident or injury occurred or could have occurred as a result of abuse or neglect a safeguarding concern should be raised to the local authority.

See: Disclosure and Raising a Concern

Language barriers exist when the person’s first language is not that used by staff.

Most people will have some understanding of English, but we should not expect them to communicate in English if it is not their preferred language.

Steps should be taken to allocate staff that speak someone's preferred language to their support team. This may require recruitment of staff.

Written information should be translated into people’s preferred language.

To maximise participation, people may need an interpreter or a family member to support them in any conversations about care or support planning, risk assessment and when making key decisions.

The above guidance also applies to people with a visual or hearing impairment.

If the barrier is not language itself the following are some techniques that everyone can try to adapt communication:

Presenting information in another way

• Using pictures e.g., of objects, feelings, or choices;
• Using easy read written information.

Objects of reference

An object of reference is a physical object that is relevant to the conversation or question.

For example, when asking if someone would like a cup of tea, show them a cup and a teabag so they know what you are asking.

For example, if the person wants something, can they take you to it and show you?

Ensuring sufficient time

Sometimes communication is ineffective simply because we do not have or allow enough time:

• To communicate what we are saying or asking in a way the person understands;
• For the person to think about their response;
• For the person to prepare what they want to communicate back to us;
• For the person to communicate in their preferred way.

This is a matter that must be raised and addressed, as it is not acceptable.

People that have extremely specific communication needs that impact on their quality of life should be supported to access a Speech and Language Therapy assessment.

A Speech and Language Therapist (SALT) can assess communication needs and develop a communication passport that can then be used by everyone to communicate more effectively.

A SALT can also work directly with the staff team to help them understand the person’s communication style, develop strategies for effective communication and use any specialist communication equipment they provide.

Examples of specialist equipment or techniques that a SALT may implement include:

• The TEACHH system;
• Makaton;
• A communication board/mat;
• Augmentative and Alternative communication, (AAC), devices, such as Voice Output Communication aids (VOC).

The Health and Care Act 2022 requires all health and social care service providers registered with the Care Quality Commission to provide employees with training on autism and learning disabilities appropriate to their role (called Oliver McGowan Training).

The training aims to provide the social care and health workforce with the right skills and knowledge to provide safe, compassionate, and informed care to autistic people and people with a learning disability.

For further information about the training and how to access it see: The Oliver McGowan Mandatory Training on Learning Disability and Autism.

Autism is caused by unusual brain development and is a lifelong condition.

There are core difficulties experienced by every person with Autism. However, the precise nature of those difficulties will be unique to the individual.

Autism can affect people across all levels of intelligence, and not all people with Autism have a learning disability or difficulty. For example, Asperger's Syndrome is a form of Autism that affects people who are average, or above average intelligence.

Autism can co-exist alongside conditions that can exacerbate difficulties and affect how well a person with Autism is able to develop and implement strategies and approaches that may be helpful to them.

Common conditions include:

• A learning disability;
• Dyslexia;
• Dyspraxia;
• Attention Deficit Hyperactivity Disorder (ADHD);
•  Mental health issues.

Everyone with Autism shares some core difficulties with social communication, social interaction, restricted and repetitive patterns of behaviour and sensory sensitivity.

Social communication

Social communication is the ability to interpret meaning behind one or more of the following:

• The spoken word;
• Tone of voice;
• Facial expressions;
• Jokes, sarcasm and hidden meanings.

Because of their difficulties with social communication, a person with Autism may:

• Not speak, or have limited speech;
• Use alternative means of communication (e.g., Makaton or behaviour);
• Find it hard to understand or use abstract concepts;
• Only talk about the same topics;
• Repeat what other people say.

Social interaction

Social interaction is the ability to ‘read’ other people and respond accordingly.

People with Autism can have difficulty:

• Predicting how other people may act, or want them to act;
• Understanding the feelings and emotions of others;
• Understanding concepts such as personal space, privacy and consent;
• Expressing their own feelings and emotions.

A person with Autism may:

• Withdraw from or avoid social interaction;
• Behave in ways that are not appropriate (e.g., touching without consent);
• Appear insensitive to the needs of others (e.g., laughing if someone is upset);
• Find it hard to form friendships, or develop inappropriate relationships;
• Express their own emotions inappropriately (e.g., through aggression or self-harm).

Repetitive behaviour and routines

People with Autism often become dependent on repetitive behaviour and routines. This provides stability and assurance but can lead to heightened anxiety when things change or do not go as planned.

Highly focused interests

Many people with Autism develop specific interests that they focus a lot of time and attention on. These interests can be very important to the person’s wellbeing, even if they do not make sense to anyone else.

Sensory sensitivity

Many people with Autism are hypersensitive and/or hypo sensitive to a range of things:

• Certain sounds and volume;
• Light;
• Touch;
• Temperature;
• Colours and patterns;
• Taste;
• Smell;
• Pain;
• Body awareness;
• Vestibular senses (balance).

If a person is hypersensitive to something they require much less exposure to it, and sometimes need to avoid it altogether. Too much exposure is normally very distracting and can cause significant anxiety, feelings of nausea and even physical pain.

If a person is hyposensitive to something they may seek it out or be desensitised to it altogether.

There are a range of strategies that, depending on the nature of their difficulties, may help a person with Autism:

• To communicate with others;
• To understand the communication of others;
• To identify emotions in themselves and in others;
• To learn about appropriate social interaction in specific circumstances;
• To develop and manage routines;
• To adapt to change;
• To cope with feelings of anxiety and being overwhelmed;
• To identify risky situations;
• To learn to carry out everyday tasks independently.

These strategies are normally agreed with a Speech and Language specialist or a Clinical Psychologist, and it is important that anyone supporting a person with Autism can apply the approaches effectively. Examples include the use of social stories, visual aids and systems such as TEACCH.

The precise ways to maximise each Autistic person’s participation will be determined by their unique difficulties.

Staff should avoid making assumptions or generalisations about this and always take steps to find out the best way to maximise their involvement before proceeding.

The following table sets out some steps that should be considered in most circumstances:

Cancer is the medical term used to describe the abnormal and uncontrolled division and multiplication of cells in any part of the body. The result is a tumour that can directly impact how well the affected area of the body functions.

There are 5 main types of cancer:

Cancer stages

Staging systems are used by health professionals to help them decide the best course of treatment.

There are 2 staging systems commonly used, but the number system set out below is the most widely recognised.

If a person has Stage 4 cancer, the first place that the cancer occurred is known as the ‘primary’ cancer, and other cancer sites are described as ‘secondary’ cancers.

Cancer grades

As well as using a staging system, cancers are often graded based on how normal (or abnormal) the cells in the affected area are.

Generally, a lower grade indicates a better outlook, whereas a higher grade will normally require more urgent and intensive treatment.

Cancer treatments

There are a range of cancer treatments available. The treatment provided depends on the part of the body affected, the size of the tumour, how quickly the cancer is progressing and the general health of the person.

Examples include:

• Surgery to remove the affected organ or tissue;
• Chemotherapy;
• Radiotherapy;
• Cancer drugs;
• Hormone therapy;
• Bone marrow and stem cell transplants.

Many cancer treatments have side effects. Side effects will be specific to the treatment and the reaction of the person to that treatment, but can include:

• Fatigue (extreme and prolonged tiredness);
• General weakness;
• Breathlessness;
• Loss of appetite;
• Mood swings and depression;
• Numbness of the hands and feet;
• An increase in infections.

The physical impact of cancer and the side effects of treatment can make carrying out everyday tasks challenging.

Increased care and support needs could exist on the day that treatment is received, in the days following treatment or throughout an entire course of treatment and beyond.

There is no reason why a person with cancer cannot fully participate in planning and decision-making processes.

The following table demonstrates some of the steps that staff can take to facilitate this:

Dementia is a complex syndrome (a group of related symptoms) associated with an ongoing decline of the brain and its abilities, which diminishes the ability of the person to do everyday tasks over time.

Common symptoms of most Dementia include:

• Loss of memory;
• Difficulty in understanding people and finding the right words;
• Difficulty in completing simple tasks and solving minor problems;
• Mood changes and difficulties managing emotional responses.

Symptoms typically worsen as the condition progresses to more areas of the brain, and in later stages of Dementia a person may experience significant difficulties with all bodily functions, including mobility, swallowing, continence, and speech.

There are several types of Dementia that can be diagnosed, depending on the cause. The most common are:

• Alzheimer's Disease;
• Vascular Dementia;
• Dementia with Lewy Bodies;
• Frontotemporal Dementia.

Alzheimer’s Disease

Alzheimer’s disease is thought to affect around 520,000 people in the UK. During the course of the disease, the chemistry and structure of the brain changes gradually over time, leading to the death of more and more brain cells. Associated symptoms get progressively worse. There is no cure for Alzheimer’s disease although symptoms in the earlier stages can sometimes be managed with medication to delay the progression of the condition.

Vascular Dementia

Vascular Dementia is the second most common type of Dementia with around 150,000 people affected. Vascular Dementia occurs when the brain cells die because they have been starved of oxygen. This can be following a Stroke but can also be caused by a blood clot or a disease of the blood vessels in the brain. Unlike Alzheimer’s Disease, Vascular Dementia symptoms suddenly worsen each time the brain is starved of oxygen and, depending on the area of the brain affected, the symptoms can be localised to the functions that particular area of the brain controls.

Dementia with Lewy Bodies

Lewy Bodies are small deposits of protein that appear in nerve cells in the brain, causing the Dementia. Lewy Bodies are also associated with Parkinson’s Disease and people with Lewy Body Dementia may experience the symptoms of both conditions depending on whereabouts in the brain the Lewy Bodies are deposited. Hallucinations, delusions, and sleep problems are more common in people with Lewy Body Dementia than with other types of Dementia.

Frontotemporal Dementia

Frontotemporal Dementia (also known as Picks Disease) is a less common type of Dementia. It occurs when the damage to the brain cells occurs only in the frontal lobes of the brain, found behind the forehead. This part of the brain deals with behaviour, problem-solving, planning and the control of emotions. An area of usually the left frontal lobe also controls speech. Unlike other types of Dementia, memory is not normally affected.

It is important not to make assumptions about mental capacity.

In the early stages of Dementia people are often able to, either independently or with support:

• Be involved in care and support processes;
• Provide an insight into their needs;
• Make decisions about care or treatment;
• Decide how best to manage risk;
• Set their own goals and outcomes.

Any lack of mental capacity must be determined by completing a mental capacity assessment.

If capacity is present, the person should be supported to be involved in care or support planning and making their own decisions. They should also be encouraged to think about the ways that their views and wishes can be promoted in the future, for example whether they wish to make an Advance Decision to Refuse Treatment or appoint a Lasting Power of Attorney.

If capacity is lacking the principles of the Mental Capacity Act should be applied to ensure that any decisions made are in their Best Interests.

See: Mental Capacity

A person with Dementia will find it harder to carry out activities of daily living as their condition progresses (for example personal care routines, cooking, socialising and taking medication).

This can happen for a range of reasons, including:

• Forgetting how to carry out some/all of the task;
• Forgetting that the task needs to be carried out;
• Losing the skills required to carry out the task adequately or safely;
• Losing the ability to maintain focus when completing the task.

The loss of independence can have a direct impact on the person’s safety, but also on their mood and mental health, for example by causing anxiety, confusion, anger, frustration, fear, isolation, and withdrawal.

Interventions that promote independence should always be considered and should be provided in a timely way to ensure the greatest positive effect.

Depending on the person’s unique needs, the table below sets out some general rules to support effective communication when the person has Dementia.

Depending on the type of Dementia, as the person’s condition progresses it is likely that they will experience changes to their mood or behaviour. Examples include:

• Increased confusion;
• Periods of distress;
• Periods of joy;
• Fear and anxiety;
• Frustration and anger;
• Physical aggression towards self and others;
• Suspicion and paranoia;
• Isolating behaviour;
• Loss of inhibition;
• ‘Wandering’.

Some of these changes will be physiological, meaning they are a symptom of their condition as it progresses. However, some will not be.

Many behaviour and emotional difficulties are instead related to:

• A loss of independence, choice, and control;
• A loss of physical and cognitive ability;
• A lack of stimulation or increased boredom;
• A lack of verbal communication;
• Misinterpretation of the communication and actions of others.

Behaviour and emotional difficulties that are not a direct symptom of the Dementia condition can often be managed or improved by making positive changes to the person’s environment or nature of support that will help them to:

• Maintain their independence;
• Communicate more effectively;
• Understand and manage the changes that are happening to them.

Where relevant a referral to a communication or behaviour specialist should always be considered and made.

Parkinson’s Disease is a condition in which brain cells that produce the chemical Dopamine become progressively damaged over many years.

Dopamine is a neurotransmitter. It transmits messages from the brain to parts of the body to make things happen (e.g., movement). As Dopamine levels reduce the body behaves differently and it becomes increasingly harder to control.

The three main symptoms of Parkinson’s Disease are:

1. Involuntary shaking of parts of the body (also known as tremors);
2. Slow movement;
3. Stiff and inflexible muscles.

How a person experiences the three main symptoms of the condition will be unique to them.

Involuntary shaking

Involuntary shaking can occur internally as well as externally and can lead to muscle spasms and cramps impacting on sleep, balance, fine motor skills and the ability to regulate body temperature.

Slow movement

Slowed movement refers to slowed physical movement, but also to slowed thought processes, and can include:

• Slowed gross movement of limbs, eyes etc.;
• Slowed reaction times;
• Difficulty concentrating on more than one thing at a time;
• Delays in processing changes in the environment;
• Delays and difficulty finding the right words;
• Delays in making decisions and processing information.

Any muscle in the body can be affected and, as well as causing pain at times stiffness or inflexibility can impact on a person’s ability to:

• Carry out tasks independently (for example dressing, preparing food, or eating);
• Sit down, stand up, walk around, and use stairs;
• Drive and get around in the community;
• Speak loudly and clearly;
• Chew, swallow, and digest food;
• Breathe normally.

Other impacts

Other impacts include:

• Fatigue (from the increased thought processes involved in trying to control the body);
• Depression and anxiety;
• Loss of sense of smell.

Treatment

Although there is currently no cure for Parkinson’s Disease, treatments are available to help reduce the three main symptoms and maintain quality of life for as long as possible. These treatments involve taking a type of medication that the brain responds to in the same way as it would to Dopamine.

The impact of the medication is normally significant in terms of symptom relief. The effect is only temporary though, and medication needs to be taken regularly throughout each day. As medication is wearing off in between doses symptoms can begin to return, meaning a person with Parkinson’s Disease can have good and bad parts of each day.

As the condition progresses, the symptoms of Parkinson’s Disease can get worse, and treatment can reduce in its effectiveness. As a result, it can become increasingly difficult to carry out everyday activities without assistance.

Parkinson’s Disease does not directly cause people to die, but the condition can place great strain on the body and can make some people more vulnerable to serious and life-threatening infections.

The impact of an effective medication regime on a person’s symptoms and independence cannot be underestimated.

Taking medication on time can literally mean the difference between a person being able to carry out tasks independently or being totally reliant on others.

When planning care and support, managers must understand:

1. When the person takes their medication;
2. Any support the person may need to take their medication;
3. How long it takes for their medication to alleviate their symptoms;
4. The impact of the medication on their ability to carry out tasks; and
5. How long does the medication remain effective for?

This will enable care and support to be provided in a way that will optimise the person’s ability to carry out tasks for themselves.

If a person requires support to take their medication their individual care or support plan should be explicit about the timing of their medication.

If a person requires support with daily tasks, this support should only be provided when they have taken their medication and the initial side effects (which can include involuntary movements and loss of muscle control) have worn off. This normally takes around 30 minutes.

A person with Parkinson’s Disease should be provided with support from a specialist Parkinson’s Nurse, who can help them to understand the condition and manage their symptoms over time.

If someone is not receiving support from a Parkinson’s Nurse, take steps to enable them to access it. The referral to a Parkinson’s Nurse can only normally be made by a health professional, so this may involve contacting the person’s GP or Consultant on their behalf (subject to normal consent rules).

There is no reason why a person with Parkinson’s Disease cannot fully participate in planning and decision-making processes.

The following table demonstrates some of the steps that staff can take to facilitate this:

The Health and Care Act 2022 requires all health and social care service providers registered with the Care Quality Commission to provide employees with training on autism and learning disabilities appropriate to their role (called Oliver McGowan Training).

The training aims to provide the social care and health workforce with the right skills and knowledge to provide safe, compassionate, and informed care to autistic people and people with a learning disability.

For further information about the training and how to access it see: The Oliver McGowan Mandatory Training on Learning Disability and Autism.

PMLD is a term used when a person has more than one disability, the most significant of which is always a profound learning disability.

A profound learning disability

A person has a profound learning disability when their IQ is below 20 (a normal IQ is 90-110) and they have social or adaptive difficulties.

Social or adaptive difficulties include problems with:

• Communication;
• Social interaction;
• Managing responses to the environment;
• Carrying out everyday tasks (e.g. eating and drinking, personal care);
• Keeping safe and recognising risks.

Due to the severity of their intellectual impairment most people with a profound learning disability will normally require significant levels of support with every aspect of their life.

Other disabilities

To be described as PMLD a person with a profound learning disability must have at least one other disability, although in reality may have several.

Other disabilities that may be present include:

• A physical impairment (e.g. Cerebral Palsy);
• Complex health needs (e.g. Epilepsy, Dysphagia, respiratory problems);
• A sensory or dual sensory impairment;
• Autism;
• High risk behaviours (towards self or others);
• Mental health difficulties.

Other disabilities are often complex, and, because of the severity of their learning disability, the person will normally be reliant on others to help manage any associated symptoms or risks to health and wellbeing.

Due to the complexity of their needs a person with PMLD is likely to be receiving support from a number of professionals or agencies, which could include:

• A social worker;
• A community nurse (including a CPN or specialist learning disability nurse);
• Clinical Psychology;
• Consultant Psychiatry;
• A Physiotherapist;
• A Speech and Language Therapist (SALT);
• A Dietician;
• Occupational Therapy.

It is important that the service establishes which professionals and agencies are involved (or need to be involved) and consults with them appropriately (and in line with confidentiality).

Care and support methods used to manage risk to (or from) a person with PMLD can sometimes be restrictive.

For example:

• Regular or PRN psychotropic medication;
• Restraint; or
• Physical intervention.

The service must work proactively with social care and health professionals to ensure that methods of providing support are always the least restrictive and all deprivations of liberty are lawful.

See: Recognising a Deprivation of Liberty

See: Responding to a Deprivation of Liberty

The involvement of a person with PMLD in their care and support should always be maximised, even if they have been assessed as lacking capacity to make any decisions that may be required.

People with PMLD find it difficult to understand what is being communicated to them and to respond in a way that has meaning to others. Their communication style is likely to be unique and can take months or even years for others to understand and master.

Depending on the person’s unique needs, the table below sets out some general rules to support effective participation when the person has PMLD.