Christmas is a time for joy and for making dreams come true. At our Innovation Centre we believe that all children can achieve their dreams, however big or small. This Christmas we are celebrating twelve fabulous ways our Innovation Centre have made dreams come true this year:
Have you been told that your child can’t have the type of continence product that she needs? Are you concerned about the quality of the products you use? Read on to find out what you can do to make sure your child gets suitable products.
Our Legal Entitlements and Problem-Solving (LEaP) Project helps families who are struggling to get the support they need from health or social care services. We helped Louise get continence products for her daughter, Rhiannon and asked the Welsh Government to make sure that its guidance did not set a daily ‘maximum’ on the number of products available to families.
We also know from our work with families that the type and/or quality of products can cause problems too. We recently heard from a parent who wanted ‘pull-ups’ for her daughter instead of nappies. She was told that her local health authority didn’t supply them and she contacted the LEaP Project for help.
We wrote a template letter to help the parent make a complaint to her local health authority. Our letter quotes from the relevant guidance, which makes it clear that children should be assessed and provided with products which meet their individual needs. We wanted to share this template letter with other families who might find themselves in a similar situation.
We’ve got a great new children’s book in our library that explores the consequences of being different. ‘That dog has got a beard!’ is all about Buster who feels sad and worried because every time he goes out for a walk people stop and stare at him. He doesn’t know why this is happening but with a little help from his family, he begins to realise that being different isn’t such a bad thing after all.
Author Natalie Ann Beattie told us a little bit about herself and the reasons why she wrote the story:
“First and foremost, I am a mother of two young children, Ethan and Isobelle. Ethan is 13 years old and Isobelle is 6. My son Ethan has Autism and ADHD, which are both very challenging and complex conditions. Before becoming a full-time mum and carer for Ethan, I was a Primary teacher for almost 10 years. I taught children from the age of 3 up to 11.
When my son was a little over 18 months things began to change, he stopped speaking and eating, and his behaviour became challenging and repetitive. I left my teaching to focus on his care, and at the tender age of 4 he was diagnosed with ASD and, two years later, ADHD. I have spent the last 10 years plus gathering all the appropriate help and support required to manage his condition and thus enable him to develop socially, as well as mentally and physically. As you can imagine, it has been an incredibly difficult and challenging journey for all of us. However, the time has come to use all those years of experience in a positive and fulfilling way.
“That dog has got a beard!” is essentially a story about a dog who, because of the way he looks attracts a lot of unwanted attention from other people. When the owners of the other dogs start talking about Buster’s beard and laugh at him, he becomes sad and worried and struggles to work out why he is different to everyone else. Fortunately, with the help and love of his family he learns to embrace his difference and become a happy dog once again.
The story is loosely based on some of the negative responses we have received as a family when we have gone out together with Ethan and something has triggered a ‘meltdown’. The frequent stares, snide remarks and hurtful comments have been devastating and a cruel reminder of the need for people to accept and become more aware of children and adults with autism. We have learned to embrace our son’s condition and to see him as a very special and wonderfully unique young person. I felt that now was the time for the rest of society to appreciate his autism and learn to celebrate, not mock, other people’s differences, whether they be physical, mental or behavioural. In essence, for society to accept him, not the other way around.
The second reason for my story is a simple one. Every time we go out for a walk with our Labradoodle, Buster, people stop and make a comment about his beard. The phrase ‘that dog has got a beard’ was one that I heard so many times that it sparked off the idea for the book. How often do you see a dog with a beard? Especially one that is 7 inches long! Buster is a wonderful dog and has an amazing temperament. He is loved wherever he goes and we are regularly invited to schools, mother and toddler groups, sports clubs and residential homes to do book readings. Buster is a hit with all ages.
Thank you Cerebra for including my book in your library.”
You can borrow ‘That dog has a beard!’ free of charge from our postal lending library.
You can also find out more on Natalie’s website and follow Buster’s adventures on his very own Facebook page .
Are you interested in hosting a workshop to help families access services for their disabled children? We are taking bookings for our popular Accessing Public Services Workshops for 2019.
The Workshops are run by our trained facilitators and will help parents and carers to access health, social care and other services for their children. They include case studies and template letters on direct payments, respite care, Disabled Facilities Grants (Disabled Home Adaptations in Scotland), residential placement and school transport. By the end of the workshop, parent/carers will be able to:
- Identify commonly occurring problems facing families accessing services and recognise different types of dispute
- Come up with problem-solving approaches to these problems
- Use a number of template letters when corresponding with public bodies
The workshops have also been accredited by the CPD Certification Service.
The workshops are free of charge and open to any organisation or parent/carer forum that supports children with a brain condition. They usually run from 10am to 2pm to fit in with the school run. All we ask is that the organiser provides a venue (with a projector), the attendees (a minimum of 10 and maximum of 25) and that there is a 30 minute lunch break. It’s up to the organisers whether they provide refreshments or ask those attending to bring their own.
The workshops have had great reviews and some of the feedback includes:
“The training was very useful and highlighted to me how much I roll over when asked. I now feel empowered to be able to get those things which my son needs”.
“I found the information really helpful also and feel sure it will help me support our families better in tackling some of the issues we discussed”.
“Thank you again for your support through our journey, we do not regret making the complaint, nor where we are now. Too many people here do not get the support they are entitled to but we were the ones that stood up”.
“Knowledge is power! We need as many of these sessions as possible to enable us to take action”.
If you are interested in hosting a workshop then please get in touch with [email protected].
Have you been told that you can’t have more than 4 continence products a day, even if your child needs more? Read on to find out how to get the products you need.
Our Legal Entitlements and Problem-Solving (LEaP) Project helps families who are struggling to get the support they need from health or social care services. Last year, we told you how we had helped Louise get continence products for her daughter, Rhiannon, who’s 9 years old and has Wolf-Hirschorn syndrome.
The local continence service had told Louise that it couldn’t supply more than 4 continence products per 24 hours, even though Rhiannon needed more because of her condition.
We noticed that the Welsh Government’s guidance on continence products contradicted itself – one part said that the number of products supplied would depend on a child’s individual needs, but another part said that there was a strict limit of 4 pads per day and that families who needed more would be told to buy their own. We wrote to the Welsh Government’s Cabinet Secretary for Health to highlight the problem and we were told that the guidance would be reviewed.
We’re very pleased to report that the Welsh Government has published a Welsh Health Circular , which has replaced the old guidelines with the new ‘Guidance for the provision of continence containment products to children and young people’.
The Welsh Government accepted our argument that the strict limit of 4 pads per day was “inconsistent with public law principles and a breach of children’s dignity and it does not take into account the need for a full assessment”. The new guidance makes it clear that while four pads per day may be enough for most children and young people, the number of products supplied to families should always meet a child’s individually assessed needs.
If you’ve been told that there’s a limit on the number of products you can have and you live in Wales, tell your local continence team about the above guidance and/or use our template letter to make a complaint. We also have a separate template letter for parents who live in England.
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 [email protected]
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.
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.
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: [email protected] or telephone: 02476 575 866.
We really appreciate your time and support. Thank you.
We 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.
For further information about KTPs contact the Cardiff KTP team: [email protected]
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
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.