Some guidance may need modification in some circumstances if you are working under restrictions imposed as a result of the COVID-19 pandemic. It is your responsibilty to follow national and local COVID-19 regulation and policy in relation to the use of NAC guidance.

NAC guidance comprises instructions on approaches, practices and strategies which can be used to create emotionally enriching activities and experiences for people who use other ways than words to communicate.

These ‘how to’ guides are designed to enable anyone involved in direct care, support and education to facilitate emotionally beneficial experiences that, whilst not ‘therapy’, can have a therapeutic effect by promoting emotional and mental wellbeing. We aim to give step-by-step instructions that are easy to follow and to include pictures and videos where possible. For many of the experiences, no special equipment is needed and we do our utmost to ensure that specialist terminology is avoided or explained. Our guidance has been checked and approved by members of our collaborators team and must be used in accordance with our terms and conditions.

GUIDANCE IS DESIGNED TO BE USED BY PEOPLE WHO KNOW THE PERSON WELL, HAVE A DEVELOPED RELATIONSHIP AND ARE ABLE TO RECOGNISE AND INTERPRET  NON-VERBAL COMMUNICATION.

The NAC website enables you to ‘pick and mix’ from the guidance offered and create individualised, personal collections or ‘menus’ of wellbeing experiences. This is a bit like saving favourites on YouTube or saving pins to your boards in Pinterest, and makes it easy for you to collate, organise and come back to the guidance that you need.

You can create up to eight profiles and these will be identifiable from a picture or colour chosen from the selection that NAC offers. Profiles are identifiable by picture or colour rather than name to ensure anonymity. The data you have provided to us in registering for this service will be managed in accordance with GDPR and the Data Protection Act 2018, and you can see our privacy notice here. We ask you not to enter any details which could identify the person for whom you are caring.

The first step is to create a profile. This is easy to do and there are instructions to walk you through the process. You will need to provide an email address, but no information that identifies the person is required.

When you have created a profile you can add as many of the experiences to the person’s collection as you wish. When you log back in to the site, you will be able to quickly and easily locate and view the profiles and collections you have created. You can also print the guidance if you wish.

Once a person has tried an experience, if it appears that they like it and that it is beneficial for them, keep it in their collection and use it as often as desired. The emotional wellbeing impact of the experiences will generally be increased with repeated use. If it is clear that the person does not like an experience, it can be deleted from their collection and you can try something different. However, take caution not to be too quick to dismiss an experience. It may be advisable to try it more than once. This is because it can take time to get used to something new, both for the person following the guidance and the person having the experience, and because the same experience may be responded to differently at different times. For example, if tired we may not like upbeat music but when full of energy, we may love it!

Over time, you will be able to develop an individualised ‘menu’ of emotional wellbeing experiences to select from throughout the day and week.

REMEMBER THAT EFFECTIVENESS IS DEPENDENT NOT SO MUCH ON THE ACTIVITY AS THE WAY THE EXPERIENCE IS FACILITATED.

To make sure that the use of our guidance is safe and effective you should follow best practice and appropriate legislation. Below are some of the key areas that you should consider.

Consent

In England and Wales The Mental Capacity Act is the law relating to consent for adults aged 16 and over. For detailed information about The Act go to SCIE

People with severe and profound intellectual disabilities may lack the decision-making capacity to give informed consent for many of the big decisions affecting their lives or for the smaller, but possibly equally important decisions that need to be made on a day-to-day basis. The Act required a decision specific process to be followed for some of the bigger decisions, whereas it allows you to carry out many aspects of day-to-day care without following a formal Mental Capacity Act assessment and decision making process, provided you are acting in the person’s best interests.

The principle of best interests is therefore key in making decisions on behalf of a person who is unable to give informed consent. The person taking the action is responsible for making a decision. Making a best interests decision involves weighing up potential risks and benefits, pros and cons and, where necessary, consulting others who know and care for the person, particularly family members.

If a person has been assessed as lacking capacity then any action taken, or any decision made for or on behalf of that person, must be made in his or her best interests. For more information about the role of the ‘decision-maker’ go to SCIE Best Interests.

For more information on the Mental Capacity Act see this link NHS.

The Office of the Public Guardian publication ‘Making Decisions: A guide for people who work in health and social care’ is available from NHS and provides information about The Mental Capacity Act and its implications in health and social care.

A Mental Capacity Act resource pack for family carers of people with a learning disability can be found at Mencap

Implied assent

The use of implied assent has been endorsed by The Mental Capacity Act 2005, which has made it clear that even if a person lacks capacity to consent they must not be excluded from the decision making process. Section 4(4) of the Mental Capacity Act emphasises that the person making the decision on behalf of someone must still try to involve them as fully as possible.

Implied assent is considered to have been given when a person’s behaviour is interpreted as showing willingness and approval. Caution must always be taken because interpretation of non-verbal communication is open to subjectivity. Certainty of approval can be improved by considering the views and interpretations of more than one person.

When using NAC guidance it is good practice to try to explain the experience you are offering, in whatever ways the person communicates best and to let the person know what is happening throughout. The Mental Capacity Act (2005) refers to this as ‘maximising capacity’, this means doing everything you can to help a person understand and to enable them to express what they want to happen next.

When offering any of the experiences, look for signs or indications of acceptance, approval and willingness and for signs of dislike, distress, disapproval and dissent and respond accordingly. Tuning-in to read and interpret non-verbal signals is crucial for making decisions about what to do, how to do it, when to continue and when to stop.

Unless the person is clearly very distressed or unhappy with what is happening, rather than stopping, consider altering what you are doing or the way that you are doing it. Don’t be too quick to conclude that the person does not like the experience, they may need time to adjust and get used to it and then find that they do like it, or a slight adjustment may be all that is needed to make it enjoyable. If an experience does not seem to be well received, you may like to try it again at another time, or in another setting and see if there is any difference in the person’s reaction.

As well as using careful observation to determine whether a person is assenting to a particular experience, observation is important for assessing the impact of the experiences on a person’s wellbeing

On the Story Massage website, Mary and Sandra have shared examples of how non-verbal assent is assessed for touch – ‘using interpersonal skills and knowledge of the individual’ to ‘assess a negative or positive response through facial expressions, body language, gestures, vocalisations and other non-verbal communication’. Gaining Consent to Touch

The use of ‘assent’ as part of best interests decision making was described in a paper on participation in research Including adults with intellectual disabilities who lack capacity to consent in research

In summary to monitor assent and dissent from people with severe and profound intellectual disabilities for participation in NAC experiences and activities you need to:

• Think about how to involve and support the person best throughout their participation and how interpret their communication, and seek views of others who know the person best to develop an understanding of their communication.
• Continually monitor assent and dissent towards participation. Seek on-going feedback from that the person is comfortable and at ease with their participation. Take immediate action if any distress is observed or brought to your attention.
• Monitor responses moment by moment. If an activity or interaction feels unsuitable, make adjustments accordingly.
• If the person needs or wants to end or leave, provide the support to enable them to do so.

What to observe when assessing implied assent and dissent:

• Facial expressions and movement
• Body language, posture, gesture
• Head and body movement
• Co-ordination
• Muscle tone – e.g. tensing and relaxing
• Vocalisations and sound
• Changes in skin appearance and colour
• Eye movement, gaze and pupil dilation
• Breathing e.g. rhythm, rate, depth and heart rate
• Behaviour
• Physical and vocal rhythms
• Energy levels, tiredness, sleep
• Concentration, alertness, engagement
• Any other signs of comfort, discomfort, pleasure or displeasure, stress, tension or relaxation and pain
• What the totality of your observations indicates about how the person is feeling and what their needs and preferences are.

Observing, assessing and recording impact and outcomes

In order to establish effects, impact and outcomes it is recommended that you observe, assess and record how the person was before, during and after an experience. You can observe, assess and record the immediate impact and outcomes of the experience and developments that occur over time. This might include observing what is happening with, and any changes to:

• Facial expressions and facial movement
• Body language, posture, gesture
• Head and body movement
• Co-ordination
• Muscle tone – e.g. tensing and relaxing
• Vocalisations and sounds
• Changes in skin appearance and colour
• Eye movement, gaze and pupil dilation
• Breathing e.g. rhythm, rate, depth and heart rate
• Behaviour
• Physical and vocal rhythms
• Laughter, giggling, crying, whimpering
• Concentration, alertness, engagement
• Energy levels, tiredness, wakefulness, sleep
• Bladder and bowel function
• Appetite
• Any other signs of comfort, discomfort, pleasure or displeasure, stress, tension or relaxation and pain
• What the totality of all your observations indicates about what impact the experience/s has/have had.

Please remember that for people who cannot tell us how they feel, we can only observe outward signs and use these as indicators of what they may be feeling internally. Furthermore, these changes may be tiny and our skills of micro-tuning and micro-observation will be essential to noticing a slight change in breathing or facial expression, for example.  Our assessment will be subjective, and this subjectivity should be reflected in what we write down and record. Any conclusions we draw will need to be tentative, but over time and with repeated observations and collating views from different people, we can become more (but probably never completely) certain and confident about our assessment and any conclusions we draw. Video recordings are excellent aids for observing what is happening and record changes, progress and developments.

Find out more about observing and recording outcomes in our Promoting Emotional Wellbeing Course, which includes downloadable pdf recording tools.

Emotional wellbeing is not just about appearing to be happy

Improving emotional and mental wellbeing involves enabling expression of all feelings and emotions, whether considered good or bad. The goal of using NAC guidance is not simply to show an increase in outward expressions of ‘positive’ emotions. The guidance should be put into practice in a way that enables a person to feel and express any and all their emotions in a safe and supported way. Outward expression of, or outpouring of emotions, such as frustration, rage, fear, anxiety, pain and sadness is not automatically considered by NAC to be ‘a bad thing’, or a sign that the carer or teacher is disliked or not ‘doing a good job’. The most emotionally supportive carers and teachers may be those who enable and are open to expression of all emotions.

NAC would like to highlight the importance of people with severe and profound intellectual disabilities having relationships with carers who provide the space for and are receptive to expression of their whole range of feelings. Furthermore, to acknowledge the qualities and skills of carers having the capacity to ‘sit with’, ‘be with’ and respond in ways that validate the person’s experience and support them with the more difficult and perhaps ‘negative’ emotions. With this in mind, you may like to reflect on often-used comments, such as ‘give me a smile’, ‘smile for me’ or ‘let me see your lovely smile.’ Perhaps these kinds of things are said to try to make the person feel better, but would you feel better if someone said that you when you were having a bad day? Or would you feel like you were being asked to suppress your feelings, to ‘put on a face’, to show others that you are ok in order to protect their feelings, be accepted and interacted with.

It is completely understandable to want others to be happy, but we need to remember that emotional wellbeing is not simply about being happy and to ensure that our support enables authentic expression and does not lead to the person feeling like they need to ‘perform’ for us, for example by smiling, in an attempt to get a positive response back from us. Emotional wellbeing has many components and is individual and may include:

• Being and feeling safe and secure (when there is no present danger)
• Having the capacity for feeling comfort, pleasure, enjoyment, contentment, interest and motivation
• Having authenticity of feeling and expression
• Experiencing emotions in a way that ‘fits’ the situation
• The ability to manage, cope with, not be overwhelmed by or stuck with distressing emotions
• Having hope
• Having feelings of self-worth, connection and belonging
• Having agency

One of the keys in promoting emotional wellbeing for others is to understand our own emotional needs and to tend to our own emotional and mental wellbeing and this is something that NAC would heartily suggest is integral to all those providing care for others. (Emotional wellbeing for carers)

Communication and being an effective facilitator

The effectiveness of using NAC guidance relies on having knowledge and understanding of how the person communicates and shows their needs, likes, dislikes, comfort, discomfort, pleasure, distress and pain. Communication skills are essential for putting the guidance into practice responsibly and . Taking plenty of time and going at the person’s own pace are also critical for effective facilitation of wellbeing experiences. Very often, the person being supported will need more time and for us to wait longer than we might first realise or be used to giving. Learn more.

The intentions that the person caring brings to the experience are also critical for proper and effective use of the guidance. Our attitude, intentions and the way we approach the activity can frame the experience as an emotionally enriching one. A walk in the park can just be a walk in the park or it can be a mental well-being practice / experience depending on how we support the person; e.g. where we place our attention and focus, how attuned we are, how well we facilitate the person’s experience.

In England and the UK, for more information on training requirements and recommendations see:

England’s Skills for Care

The UK Care Quality Commission (CQC)

The Profound and Multiple Learning Disabilities (PMLD) Standards

National Association for Special Education Needs (nasen)

Training and consultancy

The safety and protection of children and vulnerable adults are of paramount importance at all times.

Safeguarding and child protection procedures are detailed guidelines and instructions that support your overarching safeguarding policy statement. They explain the steps that an organisation takes to keep children and young people safe and what to do when there are concerns about a child’s safety or wellbeing. Learn more.

The Care Act 2014 put the safeguarding of adults on a statutory footing. If your organisation has regular contact with the public, you have a crucial role to play in the support, identification and reporting of adults who may be at risk of harm. Learn more.