Category Archives: Information and Advice

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We are currently updating our policy.

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Parents, researchers and charities join forces to create new resource for parents of children with learning disabilities.

The University of Warwick, Mencap, Cerebra, and the Challenging Behaviour Foundation have teamed up with parents of children with learning disabilities to produce a new Parent’s Guide on improving the well-being of young children with learning disabilities. The guide is being launched today (25th May) in Belfast and you can download the the booklet here.

Research has shown that young people with learning disabilities face more barriers to achieving well-being than children without a learning disability, but also that there are practical steps and strategies which parents can take to change this.

Combining the practical wisdom of parents with insight from the University of Warwick’s twenty years of research into the wellbeing of families of children with a learning disability, the new guide presents hints and tips, backed up by research, for parents to use in their family lives to promote the well-being of their children and to develop positive family relationships.

The Parent’s Guide has been created to help parents support the well-being of children from 0 – 5.   It offers suggestions on ways to build and support warm, positive family relationships, and also includes a chapter on activities parents and siblings can do to support the development of a child with learning disabilities.

Each chapter includes advice from parents, suggested activities, and space for personal notes and reflection.

Parents invited to give feedback on the guide befor its launch said:

  • “The tone of the booklet is really reassuring, and easy to understand. It makes a nice change from the booklets we usually read that are full of jargon.”
  • “The best bit of the booklet for me is hearing about other people’s experiences and coping mechanisms. It makes me realise that we aren’t alone. I just wish we had had something like this when our son was born.”
  • “Every chapter is so relatable, and it’s so useful to read about all of the activities.”
  • “I want to complete the reflection activity and review this to see if I did set some time aside for myself. I think that putting it somewhere I can see it, like on the fridge, will remind me to do it.”
  • “I think that this booklet is amazing information for parents to know.”

The guide has been written by Dr Samantha Flynn, Dr Vaso Totsika and Professor Richard Hastings of the University of Warwick’s Centre for Educational Development, Appraisal and Research (CEDAR), in collaboration with family carers of children with learning disabilities, Margaret Kelly and Joanne Sweeney of Mencap Northern Ireland, Tracy Elliott from Cerebra and Viv Cooper OBE and Jacqui Shurlock from The Challenging Behaviour Foundation.

The guide is supported by a policy briefing which you can download here:

Policy briefing

Dr Totsika said:

“We wanted to share what CEDAR has found out about the best ways parents can  support the well-being of children with learning disabilities in a format that was easy to understand and also easy for parents to put into practice.

“We are very grateful to the parents who worked with us on the Guide to put our research into context, and share their own experiences of supporting a child with learning disabilities through examples from their own lives.”

Margaret Kelly, Director of Mencap NI said:

“We are delighted to have worked alongside the University of Warwick, parents and various organisations to produce this wonderful guide to help support parents of young children with a learning disability.

“There are currently 5,000 children with a learning disability under the age of seven in Northern Ireland and we believe every young child with a learning disability should have access to early intervention services that support their development from birth.

“At Mencap, we are committed to ensuring children with a learning disability and their families have access to effective early intervention services and approaches and we believe this book will be of support to so many parents of children with a learning disability.”

Tracy Elliott, Head of Research and Information at Cerebra, said:

“Cerebra is the charity that works with families who include children with brain conditions.  By listening to families we know that one of their key concerns is for their child’s well-being, but they often question what well-being means for their child and how can they promote it.

“Using research evidence, this booklet will answer key questions families have and give them ideas of what they can do to enhance their child’s and family’s well-being.”

Jacqui Shurlock, Children and Young people’s lead at the Challenging Behaviour Foundation said:

“The Challenging Behaviour Foundation supports families of children and adults with severe learning disabilities whose behaviours are described as challenging.

“Families tell us that it is really difficult to get good information or support when children are small and that sometimes professionals dismiss their questions or concerns about how to manage day to day life.  Families want the right information at the right time, presented in the right way.  This booklet is a real step in the right direction.  We hope families will find it useful and we very much hope to see other researchers following this example.”

Development of this booklet was supported by an award from the ESRC Impact Acceleration Award of the University of Warwick (ES/M500434/1).

The research that primarily fed into this booklet has been funded by a grant from the Baily Thomas Charitable Fund (TRUST/VC/AC/SG/4016-6851). Some of the previous research that was included in the booklet had been supported by the Economic and Social Research Council.

Mencap, Cerebra, and the Challenging Behaviour Foundation have provided support for a number of the studies included in this booklet, both financial and collaborative.

 

 

Borrow ebooks and audiobooks with BorrowBox

woman reading an ebook and drinking coffee

You can now borrow ebooks from the new Cerebra BorrowBox Library. We have a selection of titles that you can borrow for free for 28 days. There are also several children’s audiobooks, if your child prefers to listen to stories rather than to read books.

The ebooks can be borrowed to read on Apple or Android devices, Kindle Fire tablets using the BorrowBox app or from your computer on their website.

How to borrow ebooks and audiobooks

If you are already a Cerebra library member and would like to use our BorrowBox library, please email Jan the Librarian at janetp@cerebra.org.uk to get your unique log in number. If you are not already a library member, fill in the membership form to join now and if you tell us you’d like to borrow ebooks or audiobooks Jan will give you your log in number in your membership email.

BorrowBox website

Visit our BorrowBox library by clicking the image below. You can browse the books we have available and even read samples. Then you just need to sign in to borrow a book or audiobook.

Borrow ebooks and audiobooks from our BorrowBox library

BorrowBox apps

Download the BorrowBox app to read ebooks or listen to audiobooks on your phone or tablet. Search for ‘BorrowBox’ in the Apple AppStore, Google Play or Amazon AppStore to download the app. Or click one of the links below.

 

Once you have installed the app on your device you need to put ‘Cerebra’ in the ‘Library’ field and then login with your membership number and PIN.

Library catalogues

Download our library lists and discover the books and toys you can borrow from our free postal lending library.

library book list cover

Book list

These are our books for adults on all sorts of topics relating to brain conditions and additional needs.

Download PDF


children's book list cover

Children’s book list

These are our books to be read with children or by older children. There is a mixture of fiction and non-fiction on all sorts of different topics including growing up and behaviour.

Download PDF


sensory toy list cover

Sensory toy list

Find out about all of our sensory toys and kits like the popular Sensory in a Suitcase.

Download PDF


If you’d prefer a hard copy of any of our library lists give us a call on 0800 328 1159 or email janetp@cerebra.org.uk and we’ll send you one in the post.

Join our library

Sign up to borrow books or sensory equipment from our free postal lending library.

About you

About the child you care for or support

About joining the library

Cerebra is committed to protecting and respecting your privacy. We will use the information you have provided to process your request to become a member of our library.

We will store your details electronically and keep it secure. We will not sell or share it with third parties. We will keep your personal data for no longer than is necessary for the purposes described above.

Please tick the box below to give us permission to use your personal information in this way. You can withdraw your permission at any time by contacting janetp@cerebra.org.uk. For more information about your rights under data protection legislation, including your right to make a complaint to the Information Commissioner’s Office, please visit ico.org.uk/for-the-public

If you have any queries about how we handle your personal information, please contact us at enquiries@cerebra.org.uk

How to look after yourself

We know from research that parents of children with a learning disability can be twice as likely to experience high stress levels as do other parents. High levels of stress can have a negative impact on your well-being.

In this article we look at some ways that you can look after your own well-being. Not all of these will work for everyone, and there could be some trial and error involved while you find what works best for you. This article is taken from A Parent’s Guide: Improving the well-being of young children with learning disabilities.

We know that the simplest things, like eating healthily, getting enough rest, and exercising regularly can be the most difficult when caring for a child with a learning disability. But it is important to do these things to look after yourself. Most parents we spoke to said that sleep was the most difficult thing for them to do. Addressing your child’s sleep issues will help you get a better night’s sleep. You might need some help from others when you try to deal with your child’s sleep difficulties. Cerebra have a team of sleep practitioners who can offer help and advice about children’s sleep problems.

You could try to make some small changes that can benefit your own and your child’s well-being. Parents and practitioners advised that some examples of small changes are:

  • Putting on some music that you enjoy and sing or dance to it
  • Thinking about short journeys that you can walk, instead of driving
  • Thinking back to the things that you most enjoyed before you had children (e.g., playing sports, going out with friends, reading), and trying to think of a creative way to fit some of them back into your life.
  • Trying something new that you’ve wanted to do for a while. The parents we spoke to said that this could be a good way to meet new people as well.
  • Find someone who can support you to have short and regular breaks to do something you enjoy (e.g., having a quiet cup of tea, going for a walk.

It might help to talk to other parents who are going through a similar experience to you. You could join a support group for parents of children with disabilities. Some of the parents we spoke to said that they were members of online support groups and parent groups on social media; they said that these were really good to get support from people who are similar to them.

We know from research that using mindfulness and meditation, can help to improve parental well-being. Mindfulness might also help us to make practical changes after practising it for some time as we are less likely to be reactive in stressful situations. There are courses available on mindfulness and these might help to get you started. Some of the parents we spoke to said that parents could use mindfulness or meditation apps on their phones, and this might be easier to do than going on a course.

Parents tell us that trying to take regular breaks from your caring responsibilities to look after your own health and well-being is also very important. You could ask family and friends to help out, or ask your Local Council for guidance about respite support. Parents we spoke to said that help is out there, and taking some time to find it can give you the time in future that you need to look after yourself. All parents said that time was the best resource when they are trying to look after themselves.

Trying to make time for yourself might feel impossible, especially when your child is young or has complex needs. But looking after yourself is not time out from caring for your child. It is an investment that supports you, your child, and your unique relationship.

Some parents that we spoke to said that even really short breaks can help them to look after themselves. This might be more manageable for some families.

We spoke to parents of children with a learning disability about some other ways that they look after their own well-being:

“I try to see a friend one evening a week, and get caught up with them. There are nights where I sit down and I am too tired, and don’t want to go, but it is worth it for that bit of sanity and get out and be with my friends and catch up.” A mother of a two and a half year old boy with Down’s syndrome
 

“I enjoy playing football, and that’s my own time a few nights a week if I’m not working. I find it hard to find time sometimes, because I work full-time.” A father of a three year old boy with a learning disability
 

“It’s not easy to fit everything in. We have to roll with it, and take time for ourselves whenever we can. We usually take time when we have dropped our daughter off at nursery to get a bite to eat, or spend some time with the other parents [of children with learning disabilities].” A mother of a three year old girl with a learning disability

 

‘A Parent’s Guide: Improving the well-being of young children with learning disabilities’ is a collaboration between the University of Warwick, Cerebra, Mencap, the Challenging Behaviour Foundation, and parents of children with learning disabilities.

The booklet has been created to help parents support the well-being of their young child with a learning disability (aged 0 to 5), but parents of older children may also find it useful.The guide contains helpful information on:

  • Chapter 1: How to look after yourself (Parental well-being)
  • Chapter 2: Organising family life
  • Chapter 3: Spending time together
  • Chapter 4: Activities to do with my child with a learning disability at home and outside

Autism and mental health – one family’s journey

“My daughter, Mair, is autistic with severe and enduring mental health difficulties. She was diagnosed with autism 6 years ago when she was 15. She was referred by her school and diagnosed through CAMHS (Child and Adolescent Mental Health Services) because she had developed serious mental health problems.

My family have been on a roller-coaster ride of suicide attempts, A&E Admissions, Psychiatric inpatient admissions, discharge and recovery, relapse and re-admission, securing support, losing support, progress followed by decline followed by progress, understanding and lack of understanding from others, hope and fear and hope again. The most difficult thing has been dealing with shattered hope; I would be better off if I did not hope, but that would be to give up and I will never do that. I live in dread of withheld numbers calling my phone (the NHS and Police call like this) in trepidation of what I am about to be told.

I could write a dissertation on the failings of mental health services. During Mair’s last inpatient admission, she absconded from the ward on several occasions despite being on a cycle of 15-minute checks, once it took 45 minutes to notice she was gone. Twice, while she had absconded she took an overdose of paracetamol and ended up in A&E. This is while we, her family, thought she was safe. The main reason behind her admission being to keep her safe. On discharge from hospital, the psychiatrist acknowledged that Mair would probably go into crisis again. This is terrifying for us as each crisis results in more serious self-harm and more suicide ideation.

Our story has been characterised by delay and poor communication between services and even within services. In our experience, the professionals caring for Mair have not spoken to each other, staff turnover and lack of inter agency working has meant we have had to repeat our story many times, wasting valuable appointment time as well as being extremely frustrating and confusing. I have needed to be an advocate for my daughter, and as she has become an adult, she has had to become her own advocate as services are hard to access and we have had to push. The crux of the problem is that, despite political rhetoric, mental health services are not on an equal footing with physical health services. My daughter has life threatening mental illness; if she had life threatening physical illness, our experiences would be different. There would be fewer delays in getting treatment for one thing and more support for families.

Autism is different in girls. Girls are excellent at masking symptoms of autism, my daughter did this thereby her diagnosis was delayed. She knew she was different but did not know why; she developed elaborate masking behaviours that worked well at first, so well no one, including her family, noticed. This eventually became too much and she became mentally unwell. Those learned behaviours are now difficult to undo, not knowing what was wrong meant there was no understanding for Mair of why she was different, she came to her own conclusions and felt she simply did not belong. Early autism diagnosis is vital, even without support services to refer families to, as it aids understanding, awareness and acceptance of difference. I have witnessed medical professionals claiming that autism diagnosis is not a priority as there is nowhere to refer families post diagnosis. While this lack of services for autism is of great concern, it is misguided to not diagnose as it fails to recognise the importance of understanding, awareness and acceptance. For my family I believe earlier diagnosis of autism could have minimised, maybe even prevented, the development of severe and enduring mental health problems. Like most mothers when things first went awry I forensically examined our family life looking for what I did wrong.

I switched between concentrating on past mistakes to worrying about future scenarios. This was unhelpful. I have come to accept that I made mistakes, but all parents get somethings wrong. I do not have a time machine to go back and change things so now I try to balance it with what I got right. In particular my children have always been loved, well cared for and the centre of our family. They always have and always will come first. Likewise, I try not to worry about the future, in particular to dwell on scenarios that might never come to be, this is exhausting and not constructive. Mindfulness principles have been helpful and I continue to try and practice them whenever things feel like they are spiralling out of control.

The hardest lesson for me as a mother has been to understand that I cannot ‘fix’ this. I need to work with service providers who have the expertise and experience to help, I’ve had to relinquish control. My role, I’ve come to accept, is to provide love, support and security every day and to work with the professionals. This is not easy, but I continue to preserver with varied success. It’s important, I believe, that the professionals listen to me and my husband and our concerns. We know Mair better than them. We have 24/7 care responsibility, they should be working with us. Nearly all NICE guidance talks about the importance of working with families but the reality in our experience has been quite different.

We have needed support on our journey and got it from local support groups and charities. I feel less isolated by talking with families who have similar experiences and a local mental health charity, Hafal, has been able to advise and support us during our bleakest hours. This external support has been vital to our well-being. Not everything has been a negative experience. Individuals have more often than not been caring and dedicated but over stretched by working in underfunded services.

Mair’s school, and more recently her college, have been supportive. I would single out Mair’s interaction with the police which has been outstanding, they have been truly lifesaving and acted with genuine kindness and understanding. As a family, we have become much closer. I know the people I can rely on for support and they are always there. My son is an extraordinarily thoughtful and considerate young man and Mair is an accomplished young woman, despite her struggles. She has achieved so much more in her 21 years than many people ever will. She addresses large conferences, participates in consultations, appears in TV and Radio interviews all to promote mental health awareness and tackle stigma. She has won awards for her work, most recently the St David Award for Citizenship.

We are a strong family unit that has stuck together and we will be OK, all of us.

Tracy

Working to improve children’s mental health

We are working on a joint funding bid with the Institute of Psychological Medicine and Clinical Neurosciences, Cardiff University for a ground-breaking project on children’s mental health.

The Institute of Psychological Medicine and Clinical Neurosciences (IPMCN) conduct high quality research into neurodevelopmental disorders and mental health problems in children and young people. Their research aims to learn more about the early origins, development and impacts of neurodevelopmental and mental health problems on children, young people and their families. Their overall aim is to improve prevention, interventions and policy.

This Project focuses on developmental genetic conditions called ‘Copy Number Variants’ (CNVs). Some people are born with genetic changes called ‘Copy Number Variants’ (CNVs). In some cases a section of their genetic code might be repeated (a duplication), and in other cases a section might be missing (a deletion). Some CNVs appear to have little or no effect, but some can be very serious. Occasionally a CNV might even give someone better resistance to certain illnesses.Generally however, CNVs are a significant cause of learning and developmental disorders, some of which are linked to a higher chance of experiencing serious psychiatric disorders.

Our project aims to develop more effective ways of ensuring children with intellectual and developmental disorders (IDD’s) have greater access to modern personalized genomic and integrated psychiatry services according to parents’ needs and preferences. 

Research at Cardiff University means we know which CNV’s carry risk of debilitating psychiatric illness; understand environmental influences and are able to recognize indicative emerging behaviors and emotional difficulties. This knowledge, when shared, will facilitate earlier intervention that is more appropriate. Intervention that will improve longer-term outcomes for children and their families.

We will use this knowledge to empower anxious families to access the best care for their children and engage with and influence multi-disciplinary services for children with intellectual and developmental disabilities. This project will support the creation and implementation of new, highly innovative and locally tailored, Shared Decision and Referral Support Services (SDRSS) that link inter-agency communications and decision-making. These services will engage with and influence service providers as well as advising, and directly advocating for families in need of services.

As part of this project, we would want to develop strong partnerships with small condition specific support groups developing cooperative approach to sharing and developing information resources. Use Cerebra’s 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.

We will know shortly if our bid has been successful, so watch out for the press releases.

BorrowBox is coming soon!

We’re delighted to announce that BorrowBox is coming soon to our library. With BorrowBox you’ll be able to borrow e-books and e-audiobooks from Cerebra 24 hours a day, 7 days a week. .

Recognised as the No1 library download platform in the world, BorrowBox is the brainchild of Bolinda Digital. Unique because it will enable members of our library to download and borrow eBooks and e-Audiobooks via digital  loans. BorrowBox is the only app of its kind in the world with an inbuilt eBook reader and eAudiobook player.

On your phone, on your iPad, on your home computer, BorrowBox means that the doors to our library will never close – you can access books around the clock. BorrowBox can be used online and with Apple iOS and Google Android devices. You’ll be able to download ebooks directly from the the Cerebra library or from the BorrowBox app.

We are so pleased to be able to offer a new service as part of our library. With BorrowBox we are able to offer e-books as well as books. These are going to appeal to a different group of people who prefer reading books on their tablet, PC or kindle. Anyone who is a member of Cerebra can join our BorrowBox library, you don’t have to be a member of the postal library. We are pleased to be giving parents more ways of getting information about neurological conditions. As well as e-books for parents, we are also going to have a selection of e-audio books for children. This is really exciting as we haven’t been able to offer books that children can listen to before. Jan Pugh – Cerebra Librarian

Keep an eye open for more information about how you will be able to use this wonderful resource, completely free of charge.

 

 

Understanding and Reducing Sleep Disorders in Children with Developmental Delay

Dr Caroline Richards and Professor Chris Oliver from the Cerebra Centre for Neurodevelopmental Disorders talk about the Sleep Project which aims to understand and reduce sleep disorders in children with developmental delay.

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 trialling 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.

You can find out more about the Sleep Project here. You can also find out more about the work that the Cerebra Centre for Neurodevelopmental Disorders does here.