Asthma is a long-term condition that affects a person’s airways - the tubes that carry air in and out of the lungs. You could say that someone with asthma has 'sensitive' airways that are inflamed and ready to react when they come into contact with something they don't like. 

The main symptoms of asthma are: 

• wheezing (a whistling sound when breathing) 

• breathlessness 

• a tight chest – which may feel like a band is tightening around it 

• coughing 

Read more about asthma here.

Additional information on asthma can be found on the BLMK Healthier Together website.

Attention deficit hyperactivity disorder (ADHD) is a condition that affects people's behaviour. People with ADHD can seem restless, may have trouble concentrating and may act on impulse.

ADHD resources for children and young people, parents/carers and primary care professionals

Working with the ADHD Foundation, The London Transformation in health care team have launched a new set of booklets for children, teenagers and their parents and carers which you may find useful. There are three separate booklets, each of which has a different focus:

• The children’s booklet is an interactive guide with 20 fun activities for children to help them focus, manage their emotions and succeed
• The teenager’s booklet is a guide and workbook with information and activities to support teenagers living with ADHD
• The parents/carers booklet is an information and resource guide for parents and carers of children and young people with ADHD and may also be useful for health professionals including those working in primary care.

All three booklets are available to share and download on the website.

Further information on ADHD can also be found on the BLMK Healthier Together website

How do you make a Referral for ADHD?

A referral for assessment of ADHD should be made by a professional for example GP, School, School Nurse, Social Worker or the young person themselves can refer into service. Referral can be made via the CAMHS website using the referral form. GPs already have it available on their system as an electronic referral. 

All referrals are screened and a triage appointment offered, this appointment may be face to face or via telephone.  Throughout this appointment the assessing clinician will gather further information and check for any risk factors. If ADHD is indicated, ADHD Assessment Packs will be given to parent/young person, one must be completed for the home setting and the other passed to the school setting to complete. 

Once packs are received back the information is reviewed by the ADHD multidisciplinary Team. If traits of ADHD are indicated, the young person will be accepted and await an appointment for full assessment.

 If following review of assessment packs, the team do not feel the criteria for assessment of ADHD is met they will provide detailed information and signposting to appropriate services for support.

Flowchart for ADHD assessment pathway.

 What if you already have a diagnosis of ADHD (Private or from another NHS provider) and medication is indicated?

 If a child or young person requires medication for a diagnosis which was not given within Milton Keynes CAMHS, either privately or by another NHS provider, we would require a copy of the diagnostic report along with a completed referral form from your GP. The Multidisciplinary Team will then review the report to ensure the assessment has the evidence to meet NICE guidance and criteria for ADHD. We may ask for a baseline Qb (Quantitive Behaviour) Test as this will enable the prescriber to see the impact of ADHD prior to starting medication and monitor how effective the medication is. The Qb Test is a computer-based test that combines attention and impulse control measurements. There are 2 different tests, depending on the age of your child or young person and information leaflets on them can be found in this section.  Once the report is received the child or young person will be added to the ADHD Medication pathway and await an appointment with a Nurse Prescriber.

Flowchart for ADHD medication pathway.

Further information can also be found on Qb Test:

Qb Test patient information

Qb Test parent information

Autism Spectrum Condition (ASC) has now replaced the term Autistic Spectrum Disorder (ASD). 

Autism spectrum condition (ASC) is the name for a range of similar conditions, which affect a person's social interaction, communication, interests and behaviour. Autism is known as a spectrum condition because of the range of difficulties that can affect children and because of the way that these present in different people.

It's estimated that about one in every 100 people in the UK has it and more boys are diagnosed with the condition than girls.

There is no ‘cure’ for autism but speech and language therapy, occupational therapy, educational support, plus a number of other interventions are available to help children and parents. Read more about Autism on MK Children's Health.

The NHS have resources available that you might find useful, click on the links below to access the resources:

• A guide to local and national resources
• What happens during an autism assessment
• Where to get support following an autism diagnosis 

If you are concerned about possible autism in young person over the age of 16, please see your GP who can discuss this with you and make a referral if appropriate.

The SEND Team offer free parent and carer programmes and workshops such as autism in the early years, autism in the primary age and autism in teenagers. To find out about upcoming programmes, please head to parent and carer programmes.

MK’s Social Communication Difficulties/Autism Directory of Services and Support Directory for 2023/24:

You will find here useful information about Autism, Autism Spectrum Conditions (ASC) and Social Communication Difficulties (SCD) for children and young people aged 0-25. The directory has a list of service providers, schools, specialist schools, further education (post 16) as well as information about leisure activities and clubs. As of June 2023, the information in this directory is up to date; the document will be updated annually via the Local Offer pages. We are currently in the process of adding hyperlinks to the document. 

Milton Keynes Social Communication Difficulties/Autism Directory of Services and Support 2023/24

Resources: 

CAMHS support for autistic people and their families

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Gina Davies is a qualified Speech and Language Therapist, please information on practical help with autism, information includes, potty training, hair care and a sleep programme. 

Neurodiversity Celebration Week Resources from Anna Freud

Celebrate neurodiversity in all its forms with toolkits of resources for pupils and staff.

Download the toolkits now

Further information on Autism can also be found on the BLMK Healthier Together website

Autism Parenting Magazine have information on sensory toys that support sensory processing. 

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Transforming Care – support for CYP with Autism and/or a Learning Disability who are at risk of requiring an in-patient stay due to Mental Health Needs 

Supporting children and young people who have a learning disability and/or autism to get the right care, at the right time, and in the right place.

Bedfordshire Luton and Milton Keynes Integrated Care Board (BLMK ICB) are committed to supporting children and young people who have a learning disability and/or autism, and their families. The Dynamic Support Register (DSR) and Care Education Treatment Reviews (CETRs) are tools designed in line with NHS National and Local arrangements for Transforming Care. These enable teams of practitioners across all service areas to early identify children and young people with learning disabilities and/or autism who are at risk of being admitted to a mental health hospital (Tier 4), to offer dynamic support.  

The DSR and CETRs are essential elements of the pathway to provide appropriate support and care at the right time, so that children and young people can lead the typical lives they want to; achieve their ambitions and aspirations in life and stay safely and healthily at home or within other community settings.

Why should I /my child or young person be added onto the Dynamic Support Register?

The Dynamic Support Register (DSR) is used to enable children and young people who have been identified as at risk, to receive specific and timely support that is personalised to meet their needs and aimed to prevent an avoidable hospital admission.

In working together with children, young people and their families and multiagency professionals involved in their care, BLMK ICB can better understand and overcome system barriers to enable those individuals who would otherwise be at risk of admission, to remain safely supported at home or within their community setting. The DSR also identifies children and young people who are currently experiencing in-patient admission, enabling them early and robust discharge planning and transition back home or to their community residence.

Children and young people with a learning disability and/or autism who may be considered for DSR addition include if they:

• Are currently placed within a mental health hospital setting
• Have had a previous mental health hospital stay within the last 12 months
• Are residing within 52-week social care or educational placement
• Are / or were involved with the youth or criminal justice system
• Are in receipt of services from youth offending teams (YOT)
• Are accessing (or in the process of accessing), specialised services because of their escalating challenging behaviours (e.g., intensive support services and specialist residential care)
• Are subject to provisions of the Mental Health Act and / or Deprivation of Liberty safeguards.

Each person on the DSR is given a RED, AMBER, or GREEN rating dependent upon how high their risk of admission is. A BLUE rating additionally identifies those children and young people currently placed within a mental health inpatient service.

Why should I / my child or young person have a CETR?

Children and young people who are being considered for a mental health hospital admission (Tier 4) and need extra support in safely avoiding this, have the right to a Care, Education, Treatment Review (CETR). The CETR makes sure that local services (e.g., Child Adolescent Mental Health Services (CAMHS), Children’s Social Care, Special Educational Needs (SEN) Team and school or college etc.) work collaboratively with the child or young person and their family to address and resolve barriers to enabling them to safely remain within the community setting (or to keep necessary children or young people inpatient stays as short as safely possible), by being creative and effective with the use of partnered resource.

If the child/young person is over 18 years, this will be called a Care Treatment Review (CTR).

How do I request to be on the DSR or have a CETR?

A child/young person with autism and/or learning disabilities or their parents/carers (on their behalf), can request consideration to be added to the DSR and have a CETR. The examples listed above are not exhaustive and further guidance around when and how to make a referral can be provided by professionals involved in your care, or by contacting the BLMK ICB Integrated and Personalised Care Team on: blmkicb.cyptcp@nhs.net

Professionals working with you can also make the referral with your consent.

Find out more about the DSR and CETRs:

https://learningdisabilitymatters.co.uk/working-together/cetr/

https://www.england.nhs.uk/publication/dynamic-support-register-and-care-education-and-treatment-review-policy-and-guide/#heading-4

Cerebral palsy is the name for a group of lifelong conditions that affect movement and co-ordination. It's caused by a problem with the brain that develops before, during or soon after birth.

More information on Cerebral palsy can be found on the NHS website. 

Further information on Cerebral palsy can also be found on the BLMK Healthier Together website

Scope also have additional advice and support on Cerebral palsy.

Diabetes affects over 20,000 children in the UK and causes a person's blood sugar to become too high. It is a lifelong condition. Almost all of these children have Type 1 Diabetes; there is a growing number of  children developing  Type 2 Diabetes in the UK.

Meet your MK Diabetes Team – supporting all children and young people with diabetes

Paediatric Diabetes Team - Milton Keynes University Hospital (mkuh.nhs.uk)

Welcome to the MK Kids with Diabetes Group

Diabetes UK - Local Groups - MK Kids with Diabetes (diabetesukgroup.org)

It is our aim to provide help, support and fun activities for children living with type 1 diabetes within Milton Keynes and surrounding areas.  We do this through group meetings, education evenings and exciting group activities which  provide young people and their families a with a safe, social forum to discuss diabetes and its effects.  When and where we can, we also try to raise money to promote awareness of diabetes and generally contribute in any way we can.

MEMBERSHIP: If a child or young person in your family has been diagnosed with type 1 diabetes, membership is free and we would be very pleased to welcome you to our group

Home - DigiBete        is a place to help young people, families and communities to manage Type 1 Diabetes. DigiBete is a video platform and app, and is a one-stop-shop for young people’s diabetes management. It is a social enterprise funded by NHS England with all content clinically approved by the Diabetes Team at Leeds Children's Hospital. We are here for you 24/7 whenever you need us.

Diabetes UK - Know diabetes. Fight diabetes. | Diabetes UK This is the national UK Charity website with a wealth of information and resources, news and views, a forum, professionals zone, learning zone and “diabetes and me”.

There is a school pack which explains good diabetes care in schools   Get your school pack | Diabetes UK

JDRF - Diabetes - Type 1 Diabetes Research, Advocacy, and Support  The JDRF is an international Charity providing research, advocacy and support for Type 1 diabetes. It has an informative section for those newly diagnosed:

Newly Diagnosed Type 1 Diabetes - JDRF

Down's syndrome is when you're born with an extra chromosome.

You usually get an extra chromosome by chance, because of a change in the sperm or egg before you're born.

This change does not happen because of anything anyone did before or during pregnancy.

More information on Down's syndrome can be found here.

Further information on Down's syndrome can also be found on the BLMK Healthier Together website

Dysphagia is the medical term for swallowing difficulties.

Some people with dysphagia have problems swallowing certain foods or liquids, while others can't swallow at all.

Other signs of dysphagia include:

• coughing or choking when eating or drinking
• bringing food back up, sometimes through the nose
• a sensation that food is stuck in your throat or chest
• persistent drooling of saliva
• being unable to chew food properly
• a gurgly, wet-sounding voice when eating or drinking

The MK Children’s Speech and Language Therapy team support children who have physical difficulties with their eating and drinking. You can refer your child to this service using the online referral link.

Supporting your toddler or young child with weaning onto solid foods, please find further information and advice leaflets on developing your child’s eating and drinking skills in the “Resources” section of the Early Years Complex Needs Speech and Language Team webpage.

You may also be interested in the information to support fussy eating in toddlers and young children. The Speech and Language Therapy Services have created a leaflet for parents to support with fussy eating.

Epilepsy is a condition that affects the brain and causes recurrent seizures. Epilepsy is usually only diagnosed if a person has had more than one seizure.If someone has epilepsy, it shouldn’t stop them from leading a normal life.
 

It’s important to tell your child’s school if they have epilepsy and to let the school know how you want them to respond if your child has a seizure in school.

Read more about epilepsy here.

Young Epilepsy is the UK’s only children and young people’s epilepsy charity, to create a society where children and young people with epilepsy are enabled to thrive and fulfil their potential, further information can be found on their PowerPoint presentation.

Useful information:

Young Epilepsy Support and inclusion team works with young people and their families to help them through their diagnosis and beyond, to better understand their rights, as well as helping them get access to the right services and support, Please find more information here. 

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Young Epilepsy Virtual Youth Club 

At the youth clubs, Young Epilepsy aim to enhance the self-esteem, self-confidence, and overall well-being of children and young people living with epilepsy, offering a safe and welcoming space where you can thrive.

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Some children experience sensory processing difficulties which impact on participation and function in everyday activities. Many children with Neurodevelopmental difficulties including ASC and ADHD experience these difficulties. If you think your child has sensory processing difficulties, please talk to any healthcare professional already working with your child. They can help you to unpick your child’s behaviours and whether they are sensory or have another cause. 

The Milton Keynes Occupational Therapy Service has developed a Universal online sensory processing awareness training and signposting to resources created by other services and agencies. This aims to support parents, carers and teachers to better understand and respond to children’s sensory needs. Our approach is centred on creating a better fit between the child, the activity and the environment. Our aim is to work with Milton Keynes Council education services to support all schools in Milton Keynes at a Universal level to be ‘sensory friendly’. A referral is not required 

More information from the Occupational Therapy Service can be found here.

Social stories to support children and young people to understand what will happen during their appointment, in order to reduce anxiety and support understanding. 

Social stories advice - vaccinations 

Vaccine social story 

Additional information and advice

Flu vaccination uptake - support people with a learning disability and their carers

People with a learning disability and their carers can get a free flu vaccination from their doctor or pharmacist. Some autistic people may also be eligible for a free flu vaccination. Resources to support uptake including films about getting vaccinated are available here, aimed at people who have, or care for someone with, a learning disability. They explain things like where to go for your flu vaccination, who is eligible, and what will happen at the appointment. Please encourage and support uptake of vaccinations for your communities, including by sharing these films with people with lived experience, and with colleagues.

Watch this film to see how some simple reasonable adjustments helped Rachael and her Mum to get their COVID-19 booster and flu vaccinations.

Top tips for supporting children and young people during vaccination from the NHS