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Luton and Bedfordshire’s Neurodevelopmental Disorder (NDD) Pathway

Luton and Bedfordshire's Community Health Services and Child and Adolescent Mental Health Services (CAMHS) have been working together to create our neurodevelopmental disorder assessment pathway.

Working with partners from the local authority, local charities, community services and parents, we've created a pathway of early intervention and support.

We've also mapped out the pathway of assessment, should you or your child be referred into either Community Health Services or CAMHS for an assessment of:

  • a possible neurodevelopmental difficulty or disorder such as autism, attention deficit hyperactivity disorder (ADHD)
  • a learning disability

The assessment will look at all a child or young person’s strengths and difficulties to provide a full developmental profile. We may also assess their cognition and learning and their functional skills.

As part of this assessment, we aim to gather as much information to help with our assessment; this will include liaising with school and any other professionals involved.

To view the NDD pathway as well as the support available please watch our video and click on the sections below.

Behaviour

All children have times when they behave in inappropriate or challenging ways. They can go through different phases as they develop and become more independent and this might mean they push limits and boundaries from time to time. At times of change or difficulty, for example if a child experiences a bereavement or family break up, changes in a child’s behaviour are understandable. A child may have a temper tantrum, an outburst of aggressive or destructive behaviour, but this is often nothing to worry about. With the help of parents and teachers, most of them will learn to behave appropriately.

Behavioural difficulties can present in different ways. Behaviour can be directed outwardly and can be challenging to others. For example, a child may be verbally or physically aggressive, defiant, un-cooperative, or show unusual or anti-social behaviour such as spitting, undressing and urinating or smearing. Alternatively, behavioural difficulties may be experienced inwardly and a child may present as socially withdrawn, anxious, depressed, and uncommunicative, they may deliberately harm themselves or may feel the need to be overly controlling in some of their behaviours. Sometimes children and young people can present in both of these ways at different times.

Significant behavioural difficulties can be regarded an indication of underlying social, emotional and mental health difficulties. The reformed Special Educational Needs and Disabilities Code of Practice 2015 changed the area of need described as ‘behaviour, social and emotional development’ to ‘social, emotional and mental health’ needs to reflect this. 

It can be helpful to think of behaviour as communication and to consider what the child might be trying to communicate either deliberately and with awareness, or unintentionally through their behaviour. Children with significant learning difficulties or who have conditions like autism and ADHD may more frequently present with challenging behaviours because they often have additional communication, interaction and sensory difficulties. 

Behavioural problems can happen in children of all ages and at all developmental stages. Some children develop serious behavioural problems. The signs to look out for are:

  • if the child’s behaviours continue  for several months or longer and they are repeatedly being uncooperative or oppositional,  aggressive, withdrawn, very unhappy or behaving in unusual or concerning ways
  • if the child’s behaviour and attitude suddenly change for no obvious or apparent reason
  • if the child’s behaviour is out of the ordinary, and seriously breaks the rules accepted in their home and school.

If a child’s behaviour has become a significant concern for a parent, carer or staff at school or other setting, there are a number and range of local and national organisations, support services and information on the Local Offer that can help. 

If you think your child has behavioural difficulties you can talk to any health or education professionals working with your child. They will help you unpick your child’s behaviours, and decide whether or not they are a significant cause for concern. For example it can be that children with high levels of anxiety or who struggle to communicate can display behavioural difficulties.


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Communication, speech and language

As with other developmental skills and milestones, the age at which children learn language and start talking can vary. Some children take a little longer - when those around them know about the stages of communication development and how to help, children can progress really well, and follow a steady pattern of development if the right strategies are in place.

If extra help is needed, this can be provided in different ways, depending on what has already been tried, and a child’s level of difficulty.

Universal Support

This type of speech and language support is for all children.

A skilled workforce of practitioners, e.g. early years (health visitors and nursery nurses), teaching staff and teaching assistants make sure the child or young person is surrounded by people who know how to:

  • help their speech, language and communication develop
  • ensure  communication skills they  have work as well as possible for them – whether at home, in the classroom, at Granny’s house, or out and about.
  • identify when a child may have a communication difficulty that needs more support.

Why do we need a Universal Level?

Many people think that speech and language development   “just happens” naturally.  This isn’t the case for all children, and research shows that there is inconsistent knowledge of e.g. speech language and communication milestones, and how to help. Universal services help to bridge gaps in awareness and knowledge so that families and others can help children develop better speech, language and communication skills.

Speech, language and communication skills develop and are used at every waking moment of a child’s life. This means that every moment is an opportunity to help the child develop these skills. By adopting a universal model, children can receive help all the time rather than for only a small number of hours a week at face-to-face sessions with a therapist.

A child will progress faster if they are growing up in a supportive environment created through universal speech and language therapy services.  Universal services improve speech, language and communication skills of ALL children – not just those with identified with a difficulty.

Targeted level speech and language therapy

Targeted speech and language therapy is focusses on children who need more than a universal approach. It is used when children and young people are known to have a Speech Language and Communication Need and where there is a risk of educational, emotional or other difficulties arising as result of their SLCN.

A targeted approach may consist of :

Training for parents, teachers, early years practitioners, classroom assistants etc. to develop particular aspects of speech and language development (such as increasing vocabulary, asking questions or expressing feelings appropriately)

  • training for teachers and classroom assistants to adapt their language and teaching materials so that the child can understand and join in lessons on a day-to-day basis
  • monitoring of  speech, language and communication development through progress reports from teachers and others, then offering support and advice on how to overcome particular difficulties.

Why do we need a Targeted Level?

Targeted provision is a way of providing more tailored speech, language and communication support for children and young people with SLCN in all environments. Children can receive support for their speech, language and communication development, which supports other areas of their learning.

Specialist level speech and language therapy

Specialist level speech and language therapy is provided to those children and young people with complex SLCN requiring specific programmes or to those who are not progressing with universal and/or targeted provision.  It is usually provided in episodes – the child sees a speech and language therapist individually or in a group, for a specific timeframe, and then has periods of targeted work carried out at home and at school, where they do not need to see the therapist.

 Specialist speech and language therapy will typically involve a combination of direct and indirect therapy via other people trained to deliver the programme e.g. parents, speech and language therapy assistants, nursing or teaching staff. Speech and language assistants deliver programmes designed by the speech and language therapist under their supervision.

Not all children with complex SLCN will develop speech, language and communication skills to a level where they understand and speak like other children.  For these children the aim of speech and language therapy is to develop their understanding and expressive skills to their fullest potential and to enable them to use those skills as effectively as possible -  this  might include  use  Augmentative or Alternative Communication (AAC) systems such as sign language (Signalong or Makaton),  symbols, photographs and objects or  ‘talking machines’.

What should I do if I’m concerned about my Child’s speech and Language Development?

If you are concerned about your child’s talking or communication skills, your first steps can be to approach your child’s health visitor or early year’s practitioner for pre-schoolers, or your child’s teacher, for school aged children. 

There is also help and information you can access on the Bedfordshire and Luton Speech and Language Therapy Website, which contains information and resources to help you, and information about how to refer to the service.

Other useful websites for information on supporting children’s communication skills include:

You may also find the Bedfordshire and Luton Speech and Language Therapy Service Facebook page useful – the site is updated daily with tips and links to further sources of support.


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Condition specific information

You may have concerns about your child (including a child in your care) where there is more than one area of concern about their development (walking, talking, learning). This could be caused by a medical condition or a conditions which affects how their nervous system works (neuro-disability) e.g. Autism Spectrum Disorder, Epilepsy. This may affect your child in a number of areas e.g. how they walk, talk, learning, form relationships with their peer group (children their age). This could be a disability or a special educational need

If you think the information above applies to your child, depending on your child’s age please speak with their key worker  in their Early Years Setting, Health Visitor or School Nurse (0-19 Health Professional), Teacher or Special Educational Needs Co-ordinator (SENCO). They will be able to discuss your concerns and agree a plan of support which may include strategies for you to work with your child at home, as well as strategies that will be implemented in Early Years/ School setting. You may also be signposted to online support & resources. They will work with you to monitor your child’s progress.


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Family wellbeing

Children’s wellbeing is connected to their parents’ (mental and physical) wellbeing more than any other influence in their lives and parents and children do not exist in isolation. Our upbringing and family life shapes us, gives us context to the world around us – our community, culture, education, values, and our behaviour.

Support for Family Wellbeing offers parents the opportunity to increase their sense of self efficacy, improve their insight and understanding of what is happening in their family, and develop skills to improve their own wellbeing while improving the wellbeing of their children. For example, setting goals and exploring feelings and behaviours.

Improved family wellbeing can play a significant role in enabling connections and friendships to develop, reducing isolation and strengthening family bonds.

Family Emotional health and wellbeing describes how we think, feel and relate to ourselves and others and how we look at the world around us. Having good emotional health affects our ability to manage, communicate, and form and sustain relationships. It also gives us resilience to cope with change and major life events such as the birth of a new baby, bereavement, job loss or divorce.

Good family emotional health and wellbeing is not only about feeling confident and happy, it is also about being positively engaged and having a strong sense of self-esteem. There is significant evidence that good emotional health and wellbeing also contributes to good physical health.


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Healthy relationships

We all want children to grow up healthy, happy, safe and able to manage the challenges and opportunities of modern Britain.

From September 2020 all primary age children will be taught Relationships and Health Education in school. Your child’s school will have flexibility to deliver the content in a way that is age and developmentally appropriate and sensitive to the needs and religious backgrounds of its pupils.

Relationships education will put in place the building blocks needed for positive and safe relationships, including with family, friends and online.

Children will be taught what a relationship is, what friendship is, what family means and who can support them.  In an age appropriate way your child’s school will cover how to treat each other with kindness, consideration and respect.

Relationships and Sex Education builds on the teaching at primary level and develops the curriculum for secondary pupils. It aims to give young people the information they need to help them develop healthy, nurturing relationships of all kinds. Your child’s school will cover content on what healthy and unhealthy relationships look like and what makes a good friend, colleague and successful marriage or committed relationship. At the appropriate time the focus will move to developing intimate relationships to equip your child to make safe, informed and healthy choices as they progress through adult life.

Characteristics of Healthy Relationships

A healthy relationship is one where a young person is respected and feels valued for who they are. It’s where they can openly share their thoughts and feelings and feel supported and encouraged.

Healthy relationships include:

  • Good communication – a person listens to you and values your opinion
  • Mutual respect- a person would never physically hurt you or call you names or threaten you
  • Trust- a person is happy for you to spend time with your other friends and family
  • Honesty
  • Equality – a person accepts when you say no to things you don’t want to do
  • Being yourself- a person makes you feel comfortable and safe

In a healthy relationship a person is free to make choices about their own behaviour and is not controlled or coerced into doing anything.

Signs of an unhealthy relationships

Parents, carers and friends may sometimes have concerns that a child or young person is becoming involved in an unhealthy relationship. There are some signs to look out for, for example a young person may :

  • Lack close relationships other than with one particular person
  • Be isolated from friends and family
  • Be prevented from working or going to school/college/university
  • Have their money taken away or controlled
  • Have access to food, drinks and day to day items restricted
  • Have their time controlled or heavily monitored
  • Have their social media accounts controlled or heavily monitored
  • Be told what to wear
  • Feel pressured to do things they are not comfortable with
  • Be put down or criticised
  • Experience threats of violence if they don’t behave a certain way
  • Experience threats to their loved ones or pets
  • Be threatened with damage to their personal property.

Child Sexual Exploitation

As a parent or carer it is important to discuss with children the differences between healthy and unhealthy relationships to help highlight potential risks to them.

There are also a number of practical steps you can take to protect children such as:

  1. Staying alert to changes in behaviour or any physical signs of abuse
  2. Being aware of new, unexplained gifts or possessions
  3. Monitor any episodes of staying out late or not returning home
  4. Making sure you understand the risks of online grooming and make sure your child knows how to stay safe online
  5. Be aware of who your child is friends with and any relationships they may have where there appears to be an imbalance in power

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Independent Living skills

All young people need to develop skills which enable to them to live their lives as independently as possible as adults.  Many of us take these skills for granted, but for some young people, this can offer a real sense of achievement and freedom and enable them to access and live as part of their local communities with less formal care and support.

Life skills can include being able to shop and budget for food, preparing meals, paying bills, banking, cleaning and maintaining a home,  as well as using the bus or other forms of public transport to get around. 


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Learning and development

Learning is the acquisition of new information, behaviours, or abilities after practice, observation, or other experience. Development is the progressive series of changes that occur over the lifespan of a human being. (APA Dictionary of Psychology).

Learning and development are closely linked, in that learning is dependent on early developmental stages.

Some children struggle with learning significantly more than the majority of their peers, which may be indicative of a learning difficulty.

All children are entitled to an education that is appropriate to their needs, promotes high standards and provides them with an opportunity to reach their potential, allowing them to achieve their best, become confident individuals and make a successful transition to adulthood (SEND COP, 2014: 6.1).

If you think your child has a learning difficulty you can talk to any health or education professionals working with your child. They will help you unpick your child’s behaviours, and their cause, and be able to advise you on the appropriate level of support your child requires. 


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Mental health

What is mental health?

We all have mental health, just like we all have physical health. Sometimes we feel well, and sometimes we don’t.

Mental health is complicated because it’s about how we think, feel and act, and this is always changing.

When our mental health is good, we enjoy being around other people and we feel able to take on challenges and new experiences. But when our mental health is not so good, we can find it much harder to cope.

Remember, if you or your child is struggling with how you think, feel or behave, you are not alone and things can get better. You deserve all the help and support you need to feel confident and comfortable being yourself so that you can enjoy life.

What is a mental health problem?

We all have good days and bad days, but when negative thoughts and feelings start to affect your daily life and stop you doing the things you enjoy, or your ability to feel ok, this means you probably need some support with your mental health.

For example, nearly everyone gets anxious before an exam, a job interview or a first date. But if we feel anxious all the time, constantly worrying that the worst could happen, and this stops us sleeping well or meeting up with friends, we might benefit from some help.

What causes mental health problems?

There are lots of reasons why we might start struggling with our mental health. These can include:

  • difficult things going on in your life
  • life experiences, such as trauma, violence or abuse
  • physical health problems
  • pressure at school, work, or about money
  • difficult relationships with partners, family or friends
  • family history of mental health problems

Often it isn’t just one of these things and sometimes there is no obvious cause. Whatever the reasons you might be struggling it’s important to remember that it isn’t your fault and that things can get better.

Life affects us all differently. No one is the same. That’s why the right mental health support will look different to different people. What works for one person might be not work the same for you, and that’s ok.

How do I know when to get help with my or my child’s mental health?

Most of us will struggle with our mental health at some point in our lives, just like we all get sick once in a while. If you notice a negative change in how you’re feeling, or you find yourself doing things that worry you, speak to someone you trust.

Trust your instincts – you know if something is up. Don’t wait for things to get really bad before reaching out. The earlier you get help, the more likely it is that you can stop your problem getting worse.

Here are some signs to look out for:

  • feeling hopeless – struggling to see the positives in life, or wishing you didn’t exist
  • getting into lots of arguments or fights
  • feeling sad all the time
  • feeling angry all the time
  • feeling anxious all the time
  • numbness – not feeling any emotions at all
  • extreme highs and lows, or mood swings
  • feeling worthless
  • changes to your eating patterns – starving yourself, over-eating, making yourself sick
  • hearing voices or seeing things that aren’t there
  • hurting yourself on purpose
  • keeping away from friends and family
  • relying heavily on alcohol, drugs or sex
  • obsessive behaviour or thoughts – feeling there is something you have to do/think about all the time or something bad will happen
  • experiencing nightmares, flashbacks or upsetting thoughts
  • obsessing about how you look
  • constant unwanted thoughts

If you recognise any of these signs, or anything else that seems out of the ordinary, or not ‘normal’ for you, then it is important to reach out for help. This doesn’t mean that you necessarily have a mental health problem, but it’s likely that some support will help you on your journey to feeling your best.


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Parenting

Being a parent is both rewarding and challenging.  All children are unique and families too but there are often common themes that are relevant to all parents. It is perfectly normal to sometimes wonder if you are getting things right or if there is perhaps another way that would work better for your child and your family.  Many parents coming along to classes are nervous and concerned that they are going to be judged.  This is definitely not the case.  Facilitators are trained to offer a welcoming and non-judgemental environment that welcomes all parents.  There is something very special about meeting other mums, dads and carers and sharing ideas and experiences with one another.  Parenting courses are facilitated rather than taught on the basis that each parent knows their children best but can sometimes be stuck on how to manage certain aspects of family life.  Facilitators running our courses understand that all parents are trying to do the best job that they can and want the best possible outcomes for their children.  Hearing from other parents how they manage similar situations can give everyone new ideas on how to approach things.

Face to face groups (either in a classroom or virtual) include lots of discussion as well as practical tasks to help you build on your strengths and gives you, as a parent, the time and space to think about changes you may wish to make.  All our courses are committed to supporting parents of children with additional needs and recognising that whilst some of the challenges may be different all children benefit from consistency, clear boundaries and the power of praise.  Parenting courses recognise that feelings drive behaviour and once we can understand the feelings, then often the unwanted behaviour begins to disappear.

Online parenting courses are a great way to get advice and information in the comfort of your own home and at times to suit you.  Check out all the parenting support available in your area here. 


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Sensory

Sensory Processing is the ability to register, discriminate, adapt and respond appropriately, both physically and emotionally to sensory input from our bodies and the environment.

We receive a great deal of information from our senses. We use this information in many ways – to help us understand our body, understand the environment, and successfully interact in the world.   

Some children are over responsive or under responsive to sensory inputs, and this can impact on their daily activities.   A child can be over responsive in one sensory area and under responsive in another. There are many contributing factors.

Find out more about supporting children with sensory processing difficulties in the Local Offer.

For useful self-help guides and information you can find a helpful leaflet published by the Bedfordshire Community Health Services Paediatric Occupational Team.

Parents have found the following ‘top tips’ information useful. This has been produced by Sheffield Children’s Hospital NHS Trust.

If you think your child has sensory processing difficulties you can talk to any health or education professionals working with your child. They will help you unpick your child’s behaviours, and whether or not they are sensory, or have another cause.  For example it can be that children with high levels of anxiety display higher levels of sensory sensitivity, or children who are struggling to communicate can use sensory behaviours to gain attention.


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Sleeping

Problems with sleep are common in all children and young people, though they may be more likely to occur in children/young people with additional needs because of possible physical or medical reasons, sensory issues, behavioural issues, learning difficulties/disabilities, and frequent hospitalisation.  Problems with sleep may include difficulties settling to sleep, waking during the night, night terrors, nightmares, environmental, anxiety, learned association.  If a child has difficulties with their sleep this can also have a significant impact on the family as well. 

Sleep is important for children/young people for their growth, it helps with concentration, memory and learning, it provides rest and relaxation, can help a child/young person feel more energetic, it helps with their mood, behaviour, emotional well-being and mental health.  The amount of sleep required for children/young people is:

Age Amount of sleep recommended over a 24 hour period
4 - 12 months 12 -16 hours (including naps)
1 - 2 years 11 -14 hours (including naps)
3 - 5 years 10 -13 hours (including naps
6 - 12 years 9 -12 hours
13 - 18 years 8 -10 hours

Sleep diaries can help to identify reasons or patterns as to why a child/young person may have difficulties with their sleep.  Establishing good sleep hygiene is important:

  • Have a consistent routine: bedtime is at the same time and your child/young person is woken at the same time each morning
  • Have an hour before bedtime to wind down and relax for sleep; listen to music, read stories, colouring/drawing, meditation/massage.  Avoid screen time or energetic/exciting activities during this time
  • Make sure that your child’s/young person’s room is quiet, calm and dark.  Light can trick our brain into thinking it is daytime and we should be awake
  • Keep room temperature to a comfortable level.  High or low temperatures can disturb sleep.
  • Make sure your child/young person does not go to bed hungry.  Regular meals during the day can help our body clock regulate sleep.  Avoid snacks less than an hour before bedtime though a light snack before this can help a child/young person sleep through the night (e.g. milk, toast, banana, crackers and cheese).  Avoid giving a child over 6 months old food or drinks during the night
  • Help your child to learn to fall asleep alone in their bed, without your presence.
  • Do not let your child have prolonged naps in the late afternoon.  If a child/young person needs to sleep, make sure they are awake by 2pm
  • Exercise during the day can help us to feel tired and reduce stress
  • Avoid caffeine and additive type drinks like cola, chocolate, tea and coffee before bedtime.  Instead have a warm milk drink
  • Parents/Carers - try to stay calm and look after yourselves!

If after trying all of the good sleep hygiene strategies, your child/young person still has difficulties with their sleep, you can speak to their Community Paediatrician about trying Melatonin.  Melatonin is a natural hormone produced in the pineal gland in our brains and mainly helps us settle off to sleep.  This may be affected in children and young people with additional needs.  Melatonin is available as tablet or liquid and should be given half an hour to one hour before bedtime, at the same time each night and the effect wears off after a few hours, (depending on the preparation), so there should be no long term effect the next day.

If your child/young person has difficulties with their sleep you can talk to any health professional working with your child. They will either signpost you to the appropriate service, if needed, or help you unpick your child’s/young person’s difficulties/behaviours, and work with you to identify any reasons or patterns and possible strategies to try.  


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Toileting and continence

In the UK an estimated 900,000, or 1 in 12, 5-19 year olds suffer from bowel and bladder conditions. These include bedwetting, daytime wetting, constipation and soiling.

The impact of continence conditions can be significant on a child or teenager’s life and the stress that comes with dealing with a child's wetting or soiling problem can be considerable for families too. Disrupted sleep, constant washing of clothing or bedding and a reluctance to leave the house can be difficult.

However, most bowel and bladder problems are avoidable and treatable.

If you are concerned about your child, talk to your child’s family worker at school or to your GP and if needed they can make a referral for additional support from the Continence Service.


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