Improving the mental health of children with brain conditions

We are launching a new project to help families of children with brain conditions access timely and appropriate mental health services. It’s aimed at families of children with rare developmental brain disorders, with a genetic cause, that carry a high risk of them developing conditions such as ADHD, autism, or schizophrenia.

We are working with The Institute of Psychological Medicine and Clinical Neurosciences (IPMCN) at Cardiff University on the project. The project will use the expertise developed at Cardiff to inform parents of the risk factors, challenges and behaviours their child may experience and give them the knowledge they need to seek early support. The project also aims to encourage genetic and mental health services to work together for the benefit of children and families.

As genetic testing becomes even more effective, cheaper and informative the numbers of children receiving a genetic diagnoses will increase. Over the last 10 years Cardiff University has built one of the largest and most detailed studies of individuals with these rare brain conditions. They have gained major insights into their development and the early indications that individual children might be autistic, have ADHD, or develop schizophrenia. The earlier we can intervene to support the child and their family the better the long term outcomes are likely to be.

We want to ensure that we have the evidence based information to pass onto parents in a way they can understand and use to make informed choices about what is best for their child and their family and to access timely and appropriate mental health services. At the same time we will work with clinicians so that they understand that these children face greater risks and challenges and should be able to access services at the earliest opportunity.

The understanding of genetic causes for brain disorders has many potential benefits for families, doctors and society. Genomic medicine promises greater opportunities to:

  • develop new treatments based on an individual’s biology and more precise diagnosis.
  • provide better information on anticipating and preventing serious mental and physical health impacts.
  • help parents, doctors, educationalists and wider society to better understand the underlying causes and consequences of developmental brain disorders, confronting some of the stigma and discrimination children and their families continually face.

As part of this project we will:

  • Identify other voluntary organisations with overlapping interests and involve them in the stakeholder advisory panel.
  • Develop strong partnerships with small condition specific support groups developing cooperative approaches to sharing and developing information resources.
  • Use our current skills, capabilities and family contacts to develop high quality accessible multimedia resources for families.
  • Work collaboratively with service providers to develop and test a model way of working to achieve improved health and education outcomes for children. An approach that can be shared and developed across authorities.
  • Contribute to teaching and training at the University Medical School, ensuring future generations of clinicians are better equipped to deliver services to help children with intellectual and developmental disorders in harmony with the wishes of their families.

We are currently recruiting a coordinator for this work who will hopefully start in January 2019. In the first instance our work will be focused in Wales, but will be rolled out across the UK as the project develops.

Two thirds of the cost of this ground-breaking and very exciting new project is being met by the Welsh Government and Innovate UK with the balance needing to be raised through the generosity of our amazing supporters. Our contribution to this project, which will have far-reaching effects, is just under £2,000 per month for the next three years.

If you would like to be a part of something amazing and help make a real and lasting difference to the lives of children with brain conditions and their families then please make a donation towards the costs – your contribution, no matter how small, will help others. You can donate online or call us on 01267 244206.

We’d also love to hear from you if you are the parent or carer of a child with a  brain condition who is experiencing problems with their mental health. Please contact us on sarahj@cerebra.org.uk

What can I do if my child needs me to be there in order for them to sleep?

For some children, falling asleep without an adult with them seems impossible. Perhaps your child is used to you sleeping in bed with them, or on a chair in the corner of their room. Although your presence may help them settle to sleep initially, if these same conditions are not in place when they wake up in the middle of the night, they may struggle to settle themselves back to sleep.

In order to help your child learn to fall back to sleep by themselves, you could try gradual withdrawal. If, for example, you usually sleep in the same bed as your child, try sleeping on the floor next to them. After three nights, move slightly further away. After three more nights, you could sleep on a chair next to the bed. Then try moving to the corner, then outside the room.

If your child cries and tries to get you to come into bed with them be firm. Avoid conversation and eye contact if possible. This may be very difficult at first but eventually your child will learn to fall asleep without you there.

This advice is taken from our detailed Sleep Guide. Several techniques are also explained our new Sleep Tips booklet.

If you’d like some individual advice just fill out our Sleep Referral Form and a member of our Sleep Team will be in touch.

Caldicot girl with cerebral palsy climbs South Wales’ highest peak

Specsavers directors, team members and Cerebra staff with Imogen at the Pen y Fan summit

Specsavers directors, team members and Cerebra staff with Imogen at the Pen y Fan summit

Six year old Imogen Ashwell-Lewis, who was diagnosed with cerebral palsy at birth, reached the top of South Wales’ highest peak on Sunday 7 October in a specially-modified four-wheeled mountain bike.

She was joined by more than 40 people – including Specsavers staff from South and Mid Wales, charity workers and even army soldiers – some of whom were harnessed to her to help pull and push her along.

Imogen’s mum, Catherine, says: ‘Imogen is so thrilled and excited to have completed this climb. It’s only thanks to the team at Cerebra that she’s been able to have this adventure – she’s never been able to do anything like this before because of her cerebral palsy. There have been so many times that she hasn’t been able to join in with physical activities which leaves her feeling left out. Being able to do things like this is a real boost to her confidence and self-esteem. She really is over the moon.’

The Pen y Fan challenge was co-organised by Cerebra and staff at Specsavers stores in South and Mid Wales, as part of their year-long charity partnership. The opticians are raising funds for the Carmarthen-headquartered charity, which currently supports 4,500 families across Wales.

Neil Robinson, West Wales regional chair for Specsavers, says: ‘Imogen and her family are an inspiration to us all, as are the services and support Cerebra provides to them and many other families across Wales. Watching Imogen complete this challenge is something I won’t forget in a hurry. I’m proud of our staff for giving up their time to help Imogen and the charity achieve something wonderful.

Everyone who took part at the top of Pen y Fan

Everyone who took part at the top of Pen y Fan

‘I’m thrilled we have been able to help raise awareness of the charity’s work, and hope it will lead to more young children with brain conditions discovering ways to live a better life with their families.’

In addition to our support services and research work, we also have an Innovation Centre based within the University of Wales Trinity St David, where bespoke equipment is designed and created, free of charge, to make children’s lives easier.

Imogen’s bike was a specially-modified four wheeled downhill mountain bike, designed and made predominantly for use by disabled people. It was created by Calvin Williams of Project ENDURO – a collaboration between experts at Swansea University, Gower College Swansea and the University of Wales Trinity Saint David. Project ENDURO kindly loaned the bike to Imogen for the climb and designers at our Innovation Centre made modifications to give Imogen the support she needed. Project ENDURO was supported by AgorIP, based at Swansea University’s School of Management, who are part funded by the European Regional Development Fund through the Welsh Government.

Terry Osborn, acting Head of Corporates, Trusts and Legacies at Cerebra, says: ‘We’re delighted to have joined the Specsavers team for the Pen y Fan climb. To be able to take Imogen with is us was a privilege and really does demonstrate that we don’t believe there is any challenge that can’t be overcome.

‘The invaluable fundraising support from Specsavers means that our Innovation Centre will be able to help more children to overcome their challenges and discover the world around them.’

This video shows Imogen reaching the top of Pen y Fan:

 

Big Thankxx to TKMaxx!

Terry, Cheryl and Amanda

Terry, Cheryl and Amanda

We would like to say a huge thank you to Cheryl Phillips, the Store Manager at TKMaxx Carmarthen. She applied for a TKMaxx community fund grant for Cerebra and we were given a fantastic donation of £1,000!

Cheryl said: “I’m delighted to be able to support such a worthwhile local charity!”

The cheque was presented to Terry Osborn, our Acting Head of Corporates, Trusts and Legacies and Amanda Tapp, one of our Fundraisers.

Support in the Early Years Survey

We are working with the Family Research Group at the University of Warwick, as well as with Mencap,  Ambitious about Autism and ENABLE Scotland on a new study focusing on Support in the Early Years for families of young children with learning disability and/or autism in the UK.

If you are the parent or parental caregiver of a child aged 0-6 years old (from birth until the day before their 7th birthday) with a diagnosed or suspected learning disability and/or autism, we would like to invite you to participate by completing our brief survey.

Your child might have other conditions as well – as long as your child has a diagnosis or suspected diagnosis of a learning disability (sometimes referred to as intellectual disability, developmental delay or special educational needs) and/or autism and lives in the UK, we are keen to hear from you.

We are exploring the experiences of families of young children with learning disability and/or autism in the UK, particularly related to their use and access to support services such as early intervention and early years support. This study will further our understanding of what support families access in the early years, what may prevent them from accessing services, and what could help to improve access to early years support. This research will also help us to develop ways to increase access to early intervention and support for families of children with learning disabilities and/or autism in the UK.

You can find out more about the study here 

You can complete the survey online here  or request a paper copy by e-mailing familyresearch@warwick.ac.uk.

If you have any questions or would like to know more about the study, please don’t hesitate to contact the research team by email: familyresearch@warwick.ac.uk or telephone: 02476 575 866.

We really appreciate your time and support. Thank you.

Get a good night’s sleep with help from our library

Join our librarian Jan (and teddy) as she talks through the different books and sensory equipment we have in our library that could help your child to sleep.

Books on sleep

  • L1676 – Treating Sleep Disorders: principle and practice of behaviour sleep medicine by M L Perlis
  • L6107 – The New Baby and Toddler Sleep Programme by John Pearce
  • L6315 & L6531 – Solving Children’s Sleep Problems: a step by step guide for parents by Lyn Quine
  • L6324 – Teach Your Child to Sleep: solving sleep problems from newborn through childhood by Millpond Children’s Sleep Clinic
  • L6325 – Sleep Disturbances in Children and Adolescents with Disorders of Development: its significance and management by Gregory Stores
  • L6367 – A Clinical Guide to Pediatric Sleep Diagnosis and Management of Sleep Problems by Jodi A Mindell
  • L6392 – Sleep Difficulties and the Autism Spectrum Disorder by Kenneth Aitken
  • L6605 & L6606 – Sleep Better: a guide to improving sleep for children with special needs by Mark Durrant
  • L6694 – The Gentle Sleep Book: a guide for calm babies toddlers and pre-schoolers by Sarah Ockwell- Smith
  • L6730 – Sleep? What’s That? The incidence and impact of sleep problems in families of disabled children by Gillian Cowdell
  • L6740 – Why We Sleep? The new science of sleep and dreams by Matthew Walker

Relaxing sensory toys

Fibre optics

The most widely accessible of all the sensory equipment. Consists of a light box and 100 two metre fibre optic strands. Features LED lights and plastic ‘sparkle’ effect strands with an automatic colour change cycle. Safe to
handle for children of all ages. Ideal for holding the child’s attention and good for those with sensory avoidance.

Mood egg

New in the library, this robust plastic egg is 42cm high and can be used indoors or outdoors. It is operated using a remote control. You can choose individual colours or a colour changing cycle. It comes with a recharging
station, each charge of 6 hours provides 8 hours of light

NB includes a flashing mode not suitable for those with photosensitive epilepsy.

Relaxation Sensory Kit

Contains all you need to create a calming environment. Includes weighted dolphin neck wrap, microwave heatable animal, aromatherapy diffuser with lavender oil, kid’s relaxation CDs, sand timer and other calming
tactile items.

Sensory in a Suitcase

Our most popular item. The suitcase contains a wealth of sensory equipment to relax and stimulate. Can be used for therapy, education and play activities. Contents include: fibre optic lights; UV torch and UV reactive items; Space Projector; aromatherapy diffuser and oils; mood pod projector with coloured lights;
natural sounds CDs and a variety of sound and tactile items. Most, but not all, also have a pin spot lamp and mirror ball.

To borrow any of these books or sensory toys contact Jan on janetp@cerebra.org.uk or 01267 244203.

How much have you learned about sleep?

Take our true or false quiz to find out.

Question #1: A cup of a tea and some chocolate biscuits are a good bedtime snack

False. Both tea and chocolate contain caffeine, which can make it difficult to fall asleep.

Question #2: We all wake up multiple times during the night

True. As part of our natural sleep cycles we all wake partially multiple times throughout the night but most of us fall straight back to sleep and have little memory of waking the next day.

Question #3: Hide and seek is a great game to include in your child’s bedtime routine

False. You should include quiet, calming activities in your child's bedtime routine. Things like colouring, play-doh or puzzles are good options.

Question #4: A visual chart can help support a bedtime routine

True. Many children are visual learners so a picture schedule can help them process the information.

Question #5: You should avoid playing music at bedtime

False. If your child finds music relaxing it's fine to play music at bedtime. We'd recommend that it's either kept on - quietly - all night or your child knows how to turn it on themselves if they wake up in the night and need the music to get back to sleep.

Question #6: Using phones and tablets close to bedtime can disrupt your sleep

True. Phones and tablets (and TVs) give out blue light which prohibits our natural melatonin production. Melatonin is the hormone that makes us feel sleepy.

Question #7: It’s best if you’re in the room when your child falls asleep

False. If your child falls asleep with you in the room they'll find it harder to go back to sleep if they wake in the night and you're not there. This is called a sleep association. Our new sleep tips booklet has more information on this and lots of other tips and techniques.

Question #8: A teddy can be used as a substitute for a parent

True. A blanket, teddy or item of your clothing can be used as a comforting object to substitute you when your child is falling asleep or if they wake up in the night. There's more information on this and other techniques in our new sleep tips booklet.

Question #9: It’s okay to let your child into your bed if they wake up early on weekends as long as they stay in bed on weekdays

False. This is called intermittent reinforcement and it's actually the most powerful type of reinforcement there is. Letting your child get into bed with you sometimes and not others can encourage your child to 'try their luck' most or every night. Consistency is key - whatever you feel is manageable.

Question #10: Avoid bright light in the morning

False. Bright light exposure (using something like a SAD lamp or a daylight bulb) in the morning can set our 24 hour sleep/wake cycle, helping with problems settling at night and waking up in the morning.

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Partnership pioneers better support services

cardiff university logoWe have forged a partnership with Cardiff University to improve services for families of children with debilitating brain disorders. The partnership aims to exploit Cardiff’s world-leading research in genetics, psychiatry and brain development in order to revolutionise Third Sector support for children with severe learning and developmental challenges.

Funded by a Knowledge Transfer Partnership grant, the project will help position Cerebra as a leader in mental health support for children and young people with brain conditions where co-occurring psychiatric conditions are widespread and often poorly managed.

The partnership aims to develop ground-breaking advocacy and procurement initiatives to improve vital early intervention and diagnostic services for children.

Carmarthen-based Cerebra works with over 47,000 families, professionals and organisations across the UK with a vision to offer a better life together for every family that includes a child with a brain condition.

The charity works across intellectual and developmental disorders (IDDs), giving them a unique perspective within the charity research sector – an approach that allows them to be child and family focussed. They work with families, academics and practitioners to fund research they can share in a way that families can use.

Tracy Elliott, Head of Research & Information at Cerebra, said: “From our work with families we know that problems accessing timely and appropriate public services is an issue that impacts on the quality of life of many families. They tell us this when they contact us, and these problems led to the development of our Accessing Public Services Toolkit.

“Families experience significant challenges in accessing timely and appropriate services for their children. Our project with Cardiff University aims to develop more effective ways of ensuring children with IDDs have greater access to modern personalized genomic and integrated psychiatry services according to parents’ needs and preferences.”

The KTP will transform the value of information given to parents to make informed choices for their children and promote evidence-based interventions.

The partnership’s mental health and developmental disorders research team is based at the MRC Centre for Neuropsychiatric Genetic and Genomics at Cardiff University School of Medicine. Dr Jane Lynch at Cardiff Business School will provide procurement and engagement expertise.

Andrew Cuthbert, Research Genetic Councillor said, “We are thrilled to have this award and to be collaborating with Cerebra. Their passion and knowhow will undoubtedly transform lives through better mental health support for thousands of families across the UK. It’s a unique opportunity to translate robust evidence on children’s development and mental health into genuine benefits for families.”

Professor Marianne van den Bree, at the MRC Centre said, “We are very excited about this collaboration with Cerebra. It will offer great opportunities for us to reach many families with a child with brain disorders and help make a difference, based on our research.”

Welsh Government and Innovate UK will grant fund the Knowledge Transfer Partnership (KTP), a scheme that sees a university graduate (Associate) apply academic expertise to help an external organisation.

Recruitment for a Mental Health Research & Development Associate – Children with Developmental Disorders, who will manage the project, is now underway. Applications for a Postgraduate in psychology or related disciplines are sought, who are passionate about meeting the needs of families of children who have learning disabilities and rare developmental disorders. The role holder will have a good appreciation of the principles of effective multi-agency support, good data analysis skills, and will be able to work both independently and with a range of different teams and organisations effectively.

Find out more about this role here. 

For further information about KTPs contact the Cardiff KTP team: ktp@cardiff.ac.uk

Sleep – tips and techniques

We are launching a new resource to help families who have a child with a brain condition to get a good night’s sleep. Sleep – tips and techniques for families who have a child with a brain condition explains techniques to help with the ten most common sleep problems including refusing to go to bed; not wanting to sleep alone, waking up during the night, waking up early.

We all need good quality sleep in order to learn new information, pay attention to the world around us, and store memories effectively. Sleep influences our mood, how hungry or full we feel, as well as fundamental biological processes such as cell development. Given the wide-reaching impact of sleep, it is not surprising that poor sleep has a significant negative impact on people.

Unfortunately, short and disrupted sleep is common in children with neurodevelopmental disorders. Children with autism, intellectual disabilities and a variety of rare genetic syndromes are at greatest risk of experiencing the negative consequences of poor sleep. What’s more, these children may already find learning new information, maintaining attention and regulating mood and behaviour very difficult; compromised sleep in these groups is therefore a huge concern.

Our Sleep Service helps families to get a better night’s sleep through one-to-one support, sleep workshops and sleep information resources.

The new booklet, Sleep – tips and techniques introduces and explains several different techniques that may help a child’s sleep and gives lots of illustrated hints and tips for putting them into practice. It includes 10 topics:

  • Bedtime routine
  • Calming time before sleep
  • A good sleep environment
  • Positive sleep associations
  • Using a comforting object
  • Gradual withdrawal from the bedroom
  • Moving bedtime backwards
  • Moving bedtime forwards
  • Creating a rewards system
  • Reducing daytime naps

Download booklet (PDF)

The information in the booklet is based on research at the Cerebra Centre for Neurodevelopmental Disorders at the University of Birmingham. Through the Sleep Project they are leading cutting edge research to understand the different types and causes of sleep problems in children with neurodevelopmental disorders, identifying how poor sleep impacts on children and their families and trialling new interventions to reduce sleep problems more effectively.

The Sleep Tips guide can be downloaded free of charge. You can also access one-to-one support, find out about sleep workshops as well as download our comprehensive Sleep Guide.

We’ve planned a week of activity on social media around the launch of the new Sleep Tips booklet. Cerebra Sleep Week runs from 17th – 23rd September and will include lots of advice and support for families who may be struggling with lack of sleep. #Cerebrasleepweek.

Understanding and reducing sleep disorders in children with development delay

The Sleep Project at the Cerebra Centre for Neurological Disorders at Birmingham University is studying sleep in children with neurological conditions. In this article Professor Chris Oliver and Dr Caroline Richards explain the need for the project and the progress that’s being made.

Why is the Sleep Project important for families?

Sleep is a universal phenomenon, influencing almost every human activity. We need good quality sleep in order to learn new information, pay attention to the world around us, and store memories effectively. Sleep influences our mood, how hungry or full we feel, as well as fundamental biological processes such as cell development. Given the wide-reaching impact of sleep, it is not surprising that poor sleep has a significant negative impact on people.

Unfortunately, short and disrupted sleep is common in children with neurodevelopmental disorders. Children with autism, intellectual disabilities and a variety of rare genetic syndromes are at greatest risk of experiencing the negative consequences of poor sleep. What’s more, these children may already find learning new information, maintaining attention and regulating mood and behaviour very difficult; compromised sleep in these groups is therefore a huge concern.

Despite this great need, research on sleep in children with neurodevelopmental disorders is sadly lacking. We know the least about sleep in the children for whom sleep is arguably most important. The Sleep Project, conducted by the Cerebra Centre for Neurodevelopmental Disorders will change this.

We lead cutting edge research to understand the different types and causes of sleep problems in children with neurodevelopmental disorders, identifying how poor sleep impacts on children and their families and trialing new interventions to reduce sleep problems more effectively.

What progress has the Sleep Project made since Cerebra began to support it?

Projects:

We have completed five core components to date:

  1. We have conducted a large scale interview study, speaking with fifty parents and carers of children with Angelman syndrome (a rare genetic syndrome associated with sleep problems) to identify their concerns and priorities in sleep.
  2. We completed a cross-syndrome sleep survey with over 190 children with Angelman syndrome, Smith-Magenis syndrome, tuberous sclerosis complex and autism spectrum disorder. This provided robust evidence of syndrome specific sleep problems and unique pathways to sleep disturbance. We found that knowing the cause of a child’s neurodevelopmental disorder is essential to ensure accurate understanding of their sleep problem.
  3. We have completed the largest direct study of sleep using Actigraphy in children with Angelman syndrome, Smith-Magenis syndrome and Autism Spectrum Disorder. In this study over 100 children wore sleep trackers (Actigraphs) for a week, to provide direct evidence of their sleep-wake cycles. This resulted in the, largest, most robust international data on sleep patterns and the daytime impact of poor sleep in these rare groups.
  4. We have collected novel night-camera video data on children in the Actigraphy study and are analysing these data to better understand what children do when they wake up. We will use our understanding of waking and settling behaviours to develop more tailored interventions for sleep.
  5. Finally, we have conducted an in-depth study of sleep and parental stress, through collecting Actigraphy, self-report and bio-marker (cortisol) data from parents of children with neurodevelopmental disorder. This will enable us to quantify the impact of children’s poor sleep upon parents and carers.

Families who have taken part in these studies have received detailed individualised feedback reports, and the results of these studies have been published or are in review at leading academic journals.

Public Knowledge:

A key aim of the sleep project is to ensure that as we improve scientific understanding of sleep in children with neurodevelopmental disorders, we simultaneously share that information with families, clinicians and educators.

Research traditionally takes 10 to 17 years to influence real world practice – that is an unacceptably long time. We are committed to reducing this lag. In addition to publishing our research in high-impact academic journals and speaking at scientific conferences, we provide regular talks on sleep to inform and update parents and professionals. These have included talks at schools, parent support conferences, national professional networking events and large public conferences such as The Autism Show.

In addition to this, we co-produced a Sleep Guide for parents, in partnership with Cerebra which is freely available via Cerebra’s website. The guide explains how problems with sleep may develop, the specific nature of sleep problems in children with rare genetic syndromes, how to assess sleep problems, and how to intervene to improve sleep.

Alongside the guide, we also co-produced brief Sleep Cards to be used by Cerebra’s Sleep Service. These provide bite-size chunks of information on sleep interventions that the Cerebra Sleep Practitioners can give to families they are working with, to help parents and carers to implement evidence-based sleep interventions.

We have also launched new sleep content on our dissemination website: Further Inform Neurogenetic Disorders (FIND). The site has had over 14,000 page views since it was launched and continues to attract a high rate of hits. The sleep section on FIND contains accessible information on topics such as: current sleep knowledge, why it is important to investigate sleep in people with genetic syndromes, what interventions are available for sleep and the sleep research that we have been conducting.

Investing in People

The Sleep Project will increase expertise in Sleep Research in the UK. Through the first four years of the project, we have trained two PhD, seven Clinical Doctoral, three Masters and 10 Undergraduate students. The majority of these students are now working in either research or clinical psychology and therefore this investment in training has increased UK expertise in sleep problems in neurodevelopmental disorders.

What will be the longer term impact of the Sleep Project for families?

The long term goal of the Sleep Project is to improve sleep outcomes for children with neurodevelopmental disorders, ensuring that they have the same opportunities to thrive in life as their typically developing peers. With sustained funding, the Sleep Project will ensure that children with neurodevelopmental disorders have access to tailored assessments and timely interventions to ensure the best quantity and quality of sleep for them and their families.

Prepared by Dr Caroline Richards and Professor Chris Oliver at The Cerebra Centre for Neurodevelopmental Disorders.