Author Archives: Elaine Collins

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 get in touch with our Sleep Team on sleep@cerebra.org.uk.

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.

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.

What impact do sleep problems have?

Although the odd night of poor sleep may not affect daily abilities, persistent sleep problems can have a huge impact on individuals with and without intellectual disability and their friends, families, colleagues and carers. For all individuals, lack of sleep is associated with problems with mood, learning, memory and behaviour.

This article is taken from our Sleep Guide which you can download for free on our website.

Learning

Importantly, poor sleep affects motivation and concentration, which means that individuals who are experiencing sleep problems may make more errors at school/work, particularly on repetitive tasks. This means that if your child is struggling on ‘easier’ tasks at school (which are often repeated until they are ready to move on to harder tasks) it is worth speaking to their teacher, who may be under the impression that they are struggling because of their intellectual disability, rather than the sleep issues.

Sleep is also vital to a process called memory consolidation, where memories from the day (e.g. memory of that is learned at school) are strengthened. If sleep is disrupted these memories may not be stored properly, making it harder for children to use what they have already learned during the next day at school.

Challenging behaviour

Poor sleep may also reduce an individual’s ability to cope with changes in their routine. You may notice that your child shows more challenging behaviour (for example, self-injury, aggression, destruction) when they have not slept well the night before. This is common in children with intellectual disability and also in children and adults of typical development! We are all more irritable when we have not slept well and are therefore more likely to show behaviours which indicate that we would like certain tasks to end or situations to change.

Since individuals with intellectual disability may have limited ways to communicate their feelings and preferences, challenging behaviour can be a very effective way of indicating needs or desires (for example for a task to be taken away). It is natural for parents/carers/teachers to want to respond quickly to the challenging behaviour, which means that it is more likely to occur again the next time they want a task to be removed. For more information on mutual reinforcement of challenging behaviour, see “Parent response to waking” on page 10 of our Sleep Guide, and also our factsheet on Managing Challenging Behaviour.

Parents of children with intellectual disability therefore have a lot to do: comforting children with sleeping problems, acting as an advocate for their child’s learning and health, and managing challenging behaviour. Often parents and family members experience a loss of sleep themselves, which can make managing these aspects of parenting more difficult and may even contribute to low mood and impaired concentration.

It may feel as though your child’s sleep problem is out of your control or that you do not have he time/resources to invest in fixing it. However, after thorough assessment, there are some simple intervention strategies available in Part Three of the guide which can help to improve sleep.

You can download our Sleep Guide and our new tips and techniques booklet free of charge from our website. If you’d like some individual advice on tackling your child’s sleep issues please get in touch with our Sleep Team.

My child just won’t go to sleep

Small girl waking her parents early in the morning.This article takes a look at what you can do if your child just won’t go to sleep. It’s taken from our Sleep Guide which is available to download for free.

What should I do when my child just will not go to sleep?

Often settling problems can be caused by a lack of bedtime routine or perhaps the bedroom being associated with activities other than sleep. However, even after establishing a calming bedtime routine, it may be that your child does not want to go to sleep and cries out to you. This may be distressing for you as a parent to hear and your natural reaction may be to go back into your child’s bedroom.

As described in Part One of the Sleep Guide, this may be contributing to the problem, and so the next step for intervention would be to stop reinforcing the settling problem. This may require ‘ignoring’ your child’s cries, which is known as extinction. However, this can be very difficult for parents and children, so graduated extinction is recommended.

Agree a set amount of time (e.g. 2 minutes) that you will allow your child to cry for, before briefly checking on them.

  1. When your child has been crying for the 2 minutes, go in and check them. This checking should only be to reassure yourself that the child is alright and to tell them to go back to bed. When you check on them, do not offer physical interaction, music, or any other aspect of the bedtime routine.
  2. Leave the room and wait the agreed time before repeating the checking procedure.
  3. You may have to repeat this many times before your child eventually falls asleep, so it’s a good idea to start on Friday night or another evening where no one has school or work the next day.
  4. The next night, gradually increase the amount of time you allow before checking on your child (e.g. from 2 minutes to 4 minutes), and continue to keep the checking procedure brief.
  5. Repeat this until the child’s crying at settling reduces.

If the suggested times here are too long, try just waiting for one minute before checking and then gradually increase the time by 30 seconds each night. Eventually your child will learn to settle themselves to sleep without you there

If you’d like some individual advice on introducing this technique please get in touch with our Sleep Team. 

Engage to Change

Kyle Davies

We’re delighted to welcome Kyle Davies to our team following his Engage to Change placement with us.

We were very keen to become involved in the Engage to Change scheme which is currently running across the whole of Wales to support young people aged 16-25 with a learning disability and/or autism into paid work placements lasting 6-12 months.

Kyle Davies from Burry Port began a six month placement with us in February this year. Elaine Collins, our PR & Marketing Manager and Kyle’s placement supervisor, explained “the process of setting up a placement was really straightforward – the staff at Engage to Change were great to work with and really took great care to match up the role we were offering with the right person. The ongoing support they have offered Kyle and myself has been fantastic”.

During his placement Kyle has worked with our marketing and fundraising teams, helping to produce newsletters and articles for the website, carrying out events research and working on the summer raffle scheme. Kyle settled in so well and made such a contribution that we were delighted to be able to offer him a paid role at the end of his placement.

Owen Williams, Kyle’s job coach from Engage to Change said “from day one Cerebra have been extremely positive and supportive towards Engage to Change and were keen to offer an employment opportunity to one of our clients. After a careful job matching process Kyle was placed with Cerebra as an Admin Assistant and has received an excellent level of mentoring, support and guidance from Elaine and other staff at Cerebra, which has enabled him to significantly increase his self-confidence and communication skills and become a valued member of the team. After completing a successful 6 month paid work placement Kyle has now been offered paid employment at Cerebra which he was very happy about! I would just like to thank Cerebra for the ongoing support and commitment to both Kyle and the Engage to Change Project as a whole”

Elaine said “Kyle hasn’t looked back since he joined us and we’ve seen his confidence increase every week. He’s very much part of the team and we’re delighted that he’s staying on with us”.

It’s been a great experience for Kyle too. He told us:

“I’ve really enjoyed working at Cerebra over the 6 months of my placement. It’s been an amazing experience working on projects for the different departments. Everyone from Cerebra and my job coaches Owen and Steve from Engage to Change have been very nice and always able to help if I had any questions. As my placement came to an end I was ecstatic to be given the news that I would be kept on as a part time member of staff. Thank you for the opportunity and I am eager to make a positive contribution to the charity”.

The experience has been such a positive one for us that we have offered a second placement under the scheme.

The Engage to Change project aims to help over 1000 young people achieve their full potential by supporting them to gain experience in the workplace and develop transferable skills through a person-centred approach. To do this they are working with 800 employers over five years, offering one-to-one job coaching and specialist employment support to both young person and employer. This project is made possible through funding from the Big Lottery Fund in partnership with Welsh Government.

We have a new Chair of Trustees

Sean Taggart

We are pleased to announce that Sean Taggart will be joining the Board of Trustees on the 1st of September as its new Chair.

After twelve years as a Trustee of Cerebra and almost six years as Chair of the Board, Professor David Rose is stepping down from the Board from 31st August 2018. Everyone at Cerebra would like to thank David for everything that he has done to promote and support the charity during his tenure. We wish him every success and happiness for the future.

Originally from England, Sean now lives in South Wales. He has many years’ experience of running his own tourism business which he grew to annual sales of £32m before selling it to his management team last year. He now runs his own business helping a wide range of owner managers to accelerate their growth plans by building stronger and more sustainable businesses.

Sean also has over 20 years’ experience in a variety of voluntary and non-executive roles within the private, public and charity sectors. For the last ten years he has chaired the Board of Trustees at Crossroads Care Kent, a charity supporting carers in Kent. It is now the largest voluntary organisation based in the county, employing over 200 staff and generating income of £4m.

He is also currently Deputy Chair of Investors in People, reflecting his long-held and incredibly strong belief that for organisations to truly thrive, they need to continually focus on investing in the development and growth of their people.

Sean commented: “I am really looking forward to getting involved with Cerebra, working with the trustees and supporting the Management Team on the next stage of the charity’s journey, which includes helping to ensure that everyone is doing the very best job possible for all of those children and families that Cerebra supports.”

David Rose - Chair of Trustees

David Rose

David Rose commented: “I consider it a great privilege to have been a Trustee of Cerebra and, in recent years, it’s Chair. It is an enormously valuable and important charity. The way that it harnesses the inputs of families, senior researchers in universities, other charities and the expertise of its own staff in the interests enhancing the wellbeing of young people with brain conditions is truly remarkable. My warmest thanks to all who contribute so much to this process and I wish you all the very best for the future”.

For more information contact Chris Jones, Chief Executive on Chrisj@cerebra.org.uk