The CAMHS Learning Disability (LD) team is a community based specialist service offering support to children and young people, aged between 0 to 18 years, who are experiencing significant mental health problems and who are diagnosed with moderate to severe learning disability.
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Our Team
Our friendly team is made up of:
- Team Coordinator
- Consultant Psychiatrist
- Medical Secretaries
- Clinical Lead/Independent Prescriber/ LD Nurses
- Highly Specialised Clinical Psychologist
- LD Practitioners/ Nurses
- Assistant Practitioners
- Occupational Therapist
- Social Workers
We also offer placements to other professionals, e.g. Trainee Nurse Associates and Trainee Clinical Psychologists.
The referral 'journey'
Referral
Once we receive the referral, one of our qualified clinicians will consider the mental health needs of the child to determine if the CAMHS LD team are the most appropriate service. We may contact you for more information to help make this decision. If we do not feel we are the most appropriate service we may signpost you to other services or support.
Appointment offer
An Initial Assessment appointment will be offered as appropriate; either ‘face-to-face’ or ‘virtually’ (MS Teams). This will depend on your individual needs. One of the medical secretaries will discuss this with the family, prior to the assessment appointment being made.
Initial Assessment
We will then complete the assessment with the parent/ carer; at this stage the child/ young person does not have to be present. We will discuss the child/ young person's emotional wellbeing journey, how they are presenting now and families expectations from the referral.
If appropriate, we will then complete observations of the child/ young person in various settings e.g., home, school, respite, community.
We will then discuss the referral as a whole team and decide what interventions we might be able to offer; or we will signpost to other services.
How we can help
The team will work directly with the young person, parents and carers, schools, other health professionals and social care to offer individual tailored advice and strategies to support the young person. This might include:
- Conducting a comprehensive mental health assessment that includes psychological, emotional and behavioural presentation, as well as looking at physical issues which could be affecting a young person's presentation. This could also include mental health medication consultation and review if deemed appropriate.
- Offering individualised mental health treatments and interventions
- Providing consultation and support to other agencies who support our young people and families such as schools, respite services, children’s homes.
- Providing opportunities for parents to access individualised peer support and share experiences in a group setting supported by the CAMHS LD team.
- Signposting to other appropriate agencies
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We can provide information and support about transitions between services, including the transition to adult services.
This is not an exhaustive list and any intervention would be individualised to the needs of the young person and family.
Communication
Communication is a means of sending and receiving information and comes in many forms. Communication might be through behaviour, physical gesture, or language. Effective and inclusive communication is about having a range of ways to tell people things from simple language to additional tools, techniques, and technologies. Misunderstanding communication can create frustration and can lead to young people using inappropriate ways to ensure their needs are met e.g. through their behaviour.
Why might we communicate?
Some of the reasons a child or young person may try to communicate with us may include: to express our wants and needs, to gain attention or interaction, to express pain/discomfort and to express likes/dislikes. It is important to view behaviour as communication and consider what a young person may be trying to tell us through their behaviour.
Communication Styles
Young people may use a range of different means to communicate. Some of these are adapted and some may be maladapted e.g. using behaviours of concern to communicate their wants/needs. It is important young people are supported to make and understand choices, express feelings and needs, and involve themselves in the world around them.
Ways young people communicate
• Makaton/British Sign Language (BSL)
• Picture Exchange Communication System (PECS)
• Photos or pictures
• Communication software (tablets/ mobiles)
• Gesture
• Objects of reference
• Physical guidance
• Behaviour
To understand which form of communication is best for the young person, it is important we spend time with the young person and others around them who know them well.
Barriers to communication
There can be many barriers to affective communication. This can cause an increase in frustration and anxiety in a child or young person. Some of these include:
• Lack of skill building for young people
• Lack of resources
• People using too many or too complicated words
• Speaking too quickly
• Lack of availability of training for parents and carers
• Tone not matching facial expression
• Too many instructions at one time
• Not being given enough processing time
• Lots of noise / distraction in the background
To help reduce these barriers, it is also important we share information with young people that is accessible and in a format best for them to be able to understand the information
Why are relationships important?
As humans, the relationships we form with other people are vital to our physical, mental and emotional wellbeing. A positive relationship can be shared between any two people who love, support, encourage and help each other practically as well as emotionally.
Relationship difficulties
Your child or young person may find that they have difficulties in some of their relationships. These might include:
- Forming relationships
- Managing communication differences / barriers
- Social Understanding (norms and rules of relationships)
- Engaging in ‘one way’ conversations that are led by the child’s special interests (i.e. lack of turn taking)
- Understanding how other people feel / what they want from the relationship
- Managing relationship fall outs / endings
- Keeping themselves safe in relationships (e.g. on line)
Factors affecting relationships:
Our first experiences of relationships as infants sets a template for how we form relationships later on in life. If these early experiences are negative, then these negative patterns of relating can be repeated throughout development (i.e. in relationships formed in school, as teenagers, as adults, as parents) If we have experienced positive, safe, secure and healthy relationships as infants and children, we have a solid foundation on which to build future relationships. This is known as ‘attachment’.
Attachment
It is important that young people learn to develop secure attachments. Caregivers can provide a secure base for attachments by being:
- Attuned
- Responsive
- Consistent
- Reliable
- Safe
If a ‘secure base’ is formed with an adult caregiver, then the child learns to use that person as a base from which to explore the world. It gives the child the best chance to learn about themselves, other people, and the world in a positive way. It is associated with numerous positive outcomes for that child which last throughout that child’s life and makes them more likely to replicate a similar positive outcome for their own children should they become parents themselves.
Factors affecting healthy attachment
- Extended or repeated separations (parental loss, parental physical or emotional unavailability)
- Unresolved pain
- Frequent moves (school, home)
- Trauma (abuse, grief and loss, injury)
- All forms of abuse (physical, emotional, sexual, neglect)
Anxiety
Anxiety is a natural emotional, psychological and physical response to a perceived threat, this can be due to things happening in the environment, (e.g. a new situation, perceived danger, significant events) or internal triggers (a feeling or a thought). It is there to protect us from harm and to keep us safe (e.g. fight / flight / freeze / fawn response). Sometimes young people may not know why they feel anxious.
How does anxiety affect us?
- Sometimes we can get through these times of feeling anxious and these feelings reduce.
- Sometimes anxiety can last much longer and take over our lives.
- It can stop us from doing the things we would like to be able to do.
- It can damage our relationships with family and friends.
- It can affect our self-esteem and confidence and how we feel others perceive us.
- Anxiety is very common, but many people don’t ask for help about their anxious feelings.
Why do people experience anxiety differently?
How anxious we feel depends on lots of things such as:
- Family history (genetic predisposition)
- How we were brought up (learned behaviours)
- What happens to us in our lives (our experiences)
- The way we have learned to manage things (the coping resources we have developed)
- Individuality (the way we think about things and process our thoughts can vary from person to person)
It is important to know what makes your child feel anxious and how you can help them to cope with these feelings.
What can trigger anxiety?
There are so many things that could lead to a person having anxious feelings, some of the common reasons we see include:
- Communication difficulties (e.g. not being understood, difficulties expressing wants and needs, asking for help, telling people how you feel….)
- Friendship problems – bullying, feeling alone
- Traumatic experiences
- Hormonal changes
- Change and routine disruption, transitions, unpredictability
- Having special interests and becoming obsessed with them
- Getting into trouble/ getting things wrong
- Keeping up with school work / expectations
What does anxiety look like?
People can respond different to anxious feelings, some of the signs you might notice include:
- Rapid and/or changing heart beat
- Fast breathing
- Churning stomach / diarrhoea and/or slowed digestive system and constipation
- Sleep difficulties
- Headaches
- Change in mood, being irritable /angry
- Feel sad or very low
- Preoccupation with thoughts and worries
Avoidance
One of the many ways both adults and children try to manage anxiety is to avoid the environment, situation, object altogether. That way they don’t have to cope with the discomfort they feel. Learning to tolerate the anxious feelings until they pass is an important way to manage anxiety. Avoidance does not allow your child to get used to a situation/ stimulus and instead reinforces the negative emotion/ feeling that they cannot cope, as your child has no positive experiences to draw on in relation to feared experiences.
Supporting young people with their anxiety
If you are supported by CAMHS LD we will be able to work with you on how to support young child’s anxious feelings. We may speak about:
Emotional Coaching
Emotion coaching helps to support people through an emotional challenging event, labelling emotions and promoting positive responses e.g. telling your child “I can see you are feeling worried. It’s ok to feel worried. Let’s try some slow breathing to help you feel calm”.
Positive mental attitude
Try to help them the person you are supporting develop a positive mental attitude (e.g. “I’m safe”, “I can manage these feelings”). Support the young person by saying you (or another trusted adult) will be there with them to help them through their feelings. It is important that you remain calm, you are non-judgemental and you feel confident in what you are doing as the child will pick up on your anxiety and interpret this as a reason why they should feel anxious themselves.
Breathing techniques:
- Coloured breathing (involves mentally picturing/meditating on a colour that represents how you want to feel and what you want to let go of in your life (stressor)
- 5 - Finger breathing (the idea is to use the five fingers to count each breath cycle).
- Milkshake breathing (Your child breathes in deeply through their nose and breathes out slowly through the straw. Encourage them to blow SMALL bubbles in the cup very gently – they'll know they have it right if they make gentle bubbles without spilling any water).
- Square breathing (involves exhaling to a count of four, holding your lungs empty for a four-count, inhaling at the same pace, and holding air in your lungs for a count of four before exhaling and beginning the pattern again. It is also referred to as box breathing, 4×4 breathing, and 4-part breath).
Awareness of triggers
Know and understand their triggers and support them to notice them too. This may be done through A-B-C charts or a PBS Plan. Triggers can be fast or slow and both need to be considered. A fast trigger may be being told ‘no’ to a desired object or activity. A slow trigger may be an upcoming event e.g. a birthday or Christmas.
Graded Exposure
Graded exposure can help a person build up their tolerance of the thing which causes them anxiety. By being exposed slowly and carefully to the situation which is causing the anxiety, a young person can begin to build up their tolerance of the levels of anxiety this may cause. Remember, avoiding the things which causes anxiety is a short-term solution and does not fix the bigger problem.
Relaxation
Yoga, meditation, or massage relaxes your breathing and helps us feel calm so we can deal with anxious feelings.
Exercise
This can make us feel better. It releases hormones that can make us feel happy and prevent us from feeling anxious in the first place.
Healthy Eating
Eating good food regularly throughout the day. Caffeine and sugar can make anxiety worse.
Sleep
Have a good sleep routine and ensure you are getting the amount of sleep your body needs.
Tool Kit
Create a tool kit to help manage your anxiety. This may include sensory/fidget toys, weighted blankets, favoured activities, visual choice boards or checklists
The senses
In total there are 8 senses, 5 of which will be commonly known and 3 could be thought of as ‘hidden senses’.
When we think about senses we often think of the 5 basic human senses:
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Sight (visual)
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Sound (auditory)
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Smell (olfactory)
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Taste (gustatory)
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Touch (tactile)
In addition to these 5 basic human sense, it is important to also consider:
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Proprioception – Movement, muscle control and body position.
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Vestibular – Sense of balance and motion
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Interoception – How our body tells our brain what is going on inside our body. For example, hunger, temperature, needing the toilet.
Sensory Processing Issues
We all process the world around us via our senses, also we are all individuals and are more, or less ‘sensitive’ to stimulus. A person (child or adult) with sensory processing issues is someone who is beyond the ‘typical’ range, meaning their brains focus and pay too much (more than average) attention or too little (less than average) attention to a stimulus. This is also linked to the neurotransmitters, or chemicals in our bodies, that help to relay messages via our nerves to our brains.
Children and adults can have processing problems associated with a specific sense or all their senses. It is important to try to understand this in order to support the person to feel regulated, in balance and maintain that ‘just right feeling’.
Some people will ‘seek out’ additional stimulus for their brains to process, an example might be someone who; likes to wear patterns and bold colours (sight- visually), likes lots of noise and hustle and bustle (sound- auditory). Likes lots of physical contact / hugs from others (touch- tactile), enjoys super spicy foods (taste- gustatory), wears strong perfumes (smell- olfactory), likes lots of movement, jumping off things, is a bit of an adrenaline junkie (movement- proproiception and balance- vestibular).
The opposite of the above would be someone who avoids existing/ additional stimulus for their brains to process, an example might be someone who; wears plain clothes no pattern and muted or pastel tones (sight- visual), dislikes noise, may put their fingers in their ears, struggles to concentrate in noisy environments or chooses to avoid these (noise- auditory). Dislikes contact from others, particularly unanticipated contact or the feel of some fabrics/ clothes on their skin (touch-tactile). They may choose a bland diet (taste- gustatory), dislike strong smells especially synthetic ones (smell- olfactory), avoids lots of movement particularly head movement (movement- proprioception and balance- vestibular).
In reality children and adults can be a mixture of the above, enjoying the stimulus from some senses and struggling with others, hence people’s sensory profiles being personal and unique to them and their sensory systems.
Supporting Sensory Regulation
It is important to consider a young person’s sensory needs when trying to facilitate their sensory regulation. Its also important to consider the long-term effect on the young person and ideally those supporting them should try to develop the young person’s tolerances. For example, if the young person struggles with noise, at times they may need to use ear defenders but ideally this should be at times when they are really struggling or need to concentrate and at other times they should be encouraged to leave the ear defenders off to give their bodies chance to experience this stimulus, it may be helpful to combine this with items in ‘what can help’ (see below).
Temporary examples of removing/reducing stimulus if this feels overwhelming for a young person may be:
- Using eye masks to block out visual stimulation
- Turning down the lights/ using soft low lights
- Sitting in a dark tent
- Using ear defenders to block out excessive noise or ear loops to reduce it (if age appropriate)
Long term examples may be:
- Wearing a cap or sunglasses when outdoors (both reduce the visual field so reduce the stimulus received.
- Wearing muted tones without patterns or decorating in muted/ pastel tones and having minimal decoration/ clutter.
- Going into the community at carefully planned times, so such as going shopping early or late so there will be less people to see and hear, this would then support a reduction in both the visual (seeing) and auditory (hearing) stimuli.
Just like it can be helpful to make short-term adjustments to remove stimulus or make long-term adjustments to reduce them. For those people who need more stimulation or information from the world around them its just as helpful for these people to explore strategies that increase the stimulus that they can receive.
Temporary examples of adding/ increasing stimulus may be:
- Looking at a book or iPad or TV
- Having lights on
Long-term examples may be:
- Wearing patterns and having lots of interesting colours on clothing, also wearing bright colourful jewellery
- Decorating the home in bold colours/ patterns, having lots of decorations and items that ‘catch the eye’
What can help?
Some senses can be really helpful as they can have a calming affect over the other senses.
- Firm massages, this involves deep tissue pressure and can be calming.
- Laying over (on their front or back) a gym ball can be calming, this also uses deep tissue pressure the child’s weight will be supported across their abdomen or back, so covers a big surface area and is different from the usual experience of weight being absorbed by the feet.
- Another strategy can be to use movement (proprioception) so lots of movement particularly when combined with resistance can be really helpful, this can be such as pushing, pulling, dragging and lifting items or the persons own body weight. The later might be hanging on a climbing frame, push-ups on a wall/ floor, bouncing on a trampoline.
It may be useful to make a ‘sensory toolbox’ for the young person you are supporting. This can be personalised and help them to meet their individual sensory needs.
More information can be found at: Sensory processing difficulties :: Lincolnshire Children's Therapy Services (lincolnshirechildrenstherapyservices.nhs.uk)
Additional information for parents and carers
Growing Up, Gaining Independence: information for families of young people with a Learning Disability
The following information was originally produced by Great Ormond Street Hospital for Children NHS Foundation Trust (GOSH).
At LPFT we encourage and support young people to become as independent with their healthcare as they can be. Some people might always need someone else to help them manage their healthcare and to make health-related decisions for them. How these decisions are made and who can make them changes as people get older.
The information below provides detail for families about decision-making when their child is unable to make decisions for themselves once they are 16. While your child is under 18 years old you may hold Parental Responsibility for them. Anyone with Parental Responsibility can manage decisions on their child's behalf, although certain aspects of this change when your child reaches 16 years old.
What changes do I need to be aware of?
When your child reaches 16 years of age they will fall under the Mental Capacity Act. This means that they must be assumed to be able to make decisions for themselves, including health-related decisions such as giving consent for examinations, treatments and tests.
If your child is aged between 16 and 18 you will only be able to make these decisions for them if they lack the mental capacity to do so and you have Parental Responsibility for them. You may not be able to make all health-related decisions on their behalf.
What is mental capacity?
Having mental capacity means being able to use and understand information necessary to make a decision and to communicate that decision. Someone who is able to do this is said to have capacity and someone who is not able to do this is said to lack capacity.
When is capacity assessed?
Capacity is decision-specific and each decision must be considered separately. This means your must be assessed every time a decision has to be made. Capacity can vary according to how complicated the decision to be made is. For example your child might have capacity to decide what to wear or eat, but lack capacity to make complex health-related decisions. It is possible for someone to temporarily lack capacity due to ill-health, medication or stress.
How is capacity assessed?
The Mental Capacity Acts says that someone must be able to do all of the following:
- Understand the decision that has to be made and all the information relevant to that decision
- Retain the information long enough to make the decision
- Balance the information (weigh up the pros and cons)
- Communicate their decision
If you child is unable to do any of the above they will be assessed as lacking capacity for that decision at that time.
Who assesses capacity?
When the decision involves a medical procedure or treatment the healthcare professional involved will usually assess your child’s capacity and will do this by talking to you and your child.
Decision making for someone who is over 16 and lacks capacity
If it is clear that your child isn’t able to make a particular decision then the decision must be taken on their behalf. The person making the decision may vary depending on the type, or complexity, of decision to be made. You might be able to make the decision or it might be made by a health professional or a social worker acting in your child’s ‘best interests’.
Who will decide what is in my child's best interest?
This will depend on the type of decision that has to be made. Usually the decision will be made by a group of people working together. The healthcare professional in charge of your child’s care will work with you, your child, and other health professionals to make sure any decisions taken are in their best interest.
What happens if we do not agree on best interest?
It can sometimes be complicated deciding what is in someone’s best interests and parents and health professionals may disagree, although this is rare. The Mental Capacity Act and the Court of Protection provide guidance on what must happen in this situation. If necessary, the Court of Protection can be asked to decide on the right course of action and will make the decision.
What happens after my child's 18th birthday?
After their 18th birthday, even if you had Parental Responsibility, you won’t be able to make health-related decisions unless you have been appointed as a Deputy by the Court of Protection. Everyone loses Parental Responsibility when their child reaches 18 years old. Decisions about treatment will be made by two Consultants in your child's best interests. They must consult you and listen to your views before making a best interests decision.
Mencap have more information about best interests decisions. Their helpline number is 0808 808 1111.
Becoming a Deputy under the Court of Protection
Some parents apply to become a ‘Deputy’ under the Court of Protection. If their application is approved they can usually continue to consent to medical treatment and/or manage their child’s affairs after their 18th birthday. There are two sorts of Deputy – one covering property and financial affairs and the other covering personal health and welfare issues. Sometimes there are restrictions on the decisions that a Deputy can make. If you want to become a Deputy you will need to apply to the Court of Protection for both of these. There will be a cost involved but you may be able to get help if you are on a low income. Further information on becoming a Deputy is available at www.
Are there other changes I should know about?
Benefits
You might be receiving a Disability Living Allowance (DLA) payment to help with any additional costs of caring for your child. When they are 16 they will need to be reassessed to see if they qualify for a different payment called a Personal Independence Payment (PIP). The Department for Work and Pensions (DWP) will contact you before their 16th birthday to explain how to claim for a PIP. More details are available at https://contact.org.uk/media/1163273/pip_guide.pdf or from your local Citizens Advice Bureau (CAB).
Local service changes
The age that children’s health services finish and adult health services start varies depending where people live. In some areas, adult services start at 16 years and in others they start at 18 years. It is a good idea to find out what age this happens where you live. Once your child is 16, if they became unwell or had an accident and needed to go to hospital they might be admitted to a children’s or an adult ward depending on where you live. Your local General Practice (GP) clinic would be able to help you find out about the changes occur in your area.
Gillick competence
The following information was originally produced by the NSPCC (https://learning.nspcc.org.uk/child-protection-system/gillick-competence-fraser-guidelines#skip-to-content - last visited 3 February 2023).
Gillick competency applies mainly to medical advice but it is also used by practitioners in other settings. For example, if a child or young person:
- would like to have therapeutic support but doesn't want their parents or carers to know about it is seeking confidential support for substance misuse
- has strong wishes about their future living arrangements which may conflict with their parents' or carers' views.
Medical professionals need to consider Gillick competency if a young person under the age of 16 wishes to receive treatment without their parents' or carers' consent or, in some cases, knowledge.
If the young person has informed their parents of the treatment they wish to receive but their parents do not agree with their decision, treatment can still proceed if the child has been assessed as Gillick competent.
There is specific guidance for medical professionals on using Gillick competence - see case history and legislation.
Assessing Gillick competence
There is no set of defined questions to assess Gillick competency. Professionals need to consider several things when assessing a child's capacity to consent, including:
- the child's age, maturity and mental capacity
- their understanding of the issue and what it involves - including advantages, disadvantages and potential long-term impact
- their understanding of the risks, implications and consequences that may arise from their decision
- how well they understand any advice or information they have been given
- their understanding of any alternative options, if available
- their ability to explain a rationale around their reasoning and decision making.
Remember that consent is not valid if a young person is being pressured or influenced by someone else.
Children's capacity to consent may be affected by different factors, for example stress, mental health conditions and the complexities of the decision they are making. The same child may be considered Gillick competent to make one decision but not competent to make a different decision.
If you don't think a child is Gillick competent or there are inconsistencies in their understanding, you should seek consent from their parents or carers before proceeding.
In complex medical cases, such as those involving disagreements about treatment, you may wish to seek the opinion of a colleague about a child’s capacity to consent (Care Quality Commission, 2019).
Young people also have the right to seek a second opinion from another medical professional (General Medical Council, 2020).
Refusal of medical treatment
Gillick competency can be used when young people wish to refuse medical treatment.
However, if a young person refuses treatment which may lead to their death or severe permanent harm, their decision can be overruled. More information about this is available in the guidance for medical professionals in each UK nation - see case history and legislation.
Child protection concerns
The child's safety and wellbeing is paramount.
When you are assessing Gillick competency if you have any concerns about the safety of the young person you should check whether previous child protection concerns have been raised, and explore any factors that could put them at risk of abuse.
You must always share child protection concerns with the relevant agencies, even if this goes against a child's wishes.
