Author Archives: Elaine Collins

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.

 

 

Improving the well-being of young children with learning disabilities: A Parent’s Guide

We’re looking for people to take a look at a brand new booklet on improving the well-being of young children with learning disabilities, and to give their feedback.

Researchers at the University of Warwick are working with a group of parents of children with learning disabilities, Mencap, the Challenging Behaviour Foundation, and Cerebra to write a guide for parents to support the well-being of young children with learning disabilities.

The booklet combines what we know from research with parents’ personal experiences. The family activities within the booklet have been shown to be important for supporting the well-being of children with learning disabilities.

There are four chapters in the booklet, and parents are able to use the booklet flexibly depending on what information they want to know at the time. The chapters are about:

  • How to look after yourself
  • Organising family life
  • Spending time together
  • Activities to do with my child with a learning disability at home and outside

You can download a copy of the booklet for free here.

Please tell us what you think about it here.

Thank you for your help.

Research Advisory Committee – Call for applications

We are recruiting to our Research Advisory Committee. In this article you can find out more about what Cerebra does, the types of research we support, the role and responsibilities of the committee, your eligibility and how to apply.

Cerebra’s role

We believe that every family that includes a child with a brain condition should have the chance to discover a better life together. We listen to families that have children with brain conditions. We use what they tell us to inspire the best research and innovation. Then we help them put the knowledge into practice so they can discover a better life together.

By ‘brain condition’, we mean any neurodevelopmental disorder (NDD) that affects the developing brain, including those caused by illness, genetics or traumatic injury. Brain conditions include (but are not limited to) autism, ADHD, Down’s syndrome, learning disabilities, cerebral palsy, epilepsy and developmental delay.

Our key values are summed up in three key words:

Positive: our optimism helps families see past every barrier.
Inquisitive: a spirit of relentless discovery drives everything we do.
Together: our researchers, practitioners and families go further when they travel together.

Current clinical practice identifies each condition individually with its own set of identifying characteristics, but many neurodevelopmental disorders (NDD’s) occur together and/or share similar risk factors, behaviours and challenges. Thinking is gradually changing and ‘multi-morbidity’ is accepted as the norm. We work across rather than within NDD’s, giving us a unique perspective within the charity research sector.

The types of research we support

At Cerebra, we support two research approaches:

  • Research aimed at reducing the prevalence of preventable disabling conditions and thereby limiting the number of children whose health and wellbeing are likely to be adversely affected.
  •  Research that addresses a range of measures to ensure family needs are recognised and met.

Our current research portfolio reflects both approaches. Our research grants run from 1st January 2013 to 31st December 2019 and over that period, we will invest £4,213,689 in research.

Role and responsibilities

The role of the committee is ultimately to advise Trustees on the relative merits of particular pieces of research. As such, you will be invited to participate in grant application reviews, evaluate the impact of our current research and provide scientific advice which will inform Cerebra’s research strategy.

Grant reviews will involve reading, evaluating, submitting scores and comments on grant applications within an allotted time frame, and attend meetings.

Evaluating the impact of our current research will involve reviewing documentation and potentially site visits.

This is a voluntary role but out of pocket expenses, including travel and subsistence to attend meetings and site visits, will be paid. Commitment is crucial and time constraints will apply to allow us to complete our work and deliver on our commitments in a timely manner.

Are you eligible?

Applications are invited from individuals with a publication record in research (clinical and applied research in the fields that fall under Cerebra’s remit), success in obtaining research grants / awards and a willingness to devote the necessary time.

Posts are formally available from April 2018 and appointments are for a three-year term in the first instance.

Individuals who are interested in applying for one of these posts, or just want more information are encouraged to contact Georgia Mappa at GeorgiaM@cerebra.org.uk with any queries.

The terms of reference and governing documentation for this committee can be downloaded here.

How to apply

Applicants should submit a brief CV giving details of previous key posts, current post, roles in relevant committees and six most relevant publications. This should be accompanied by a written statement (maximum 1,000 words) which covers relevant previous experiences and expertise.

Applications should be submitted by 16th April 2018 and directed to Georgia Mappa at GeorgiaM@cerebra.org.uk

Successful applicants will be invited to join a welcome meeting with Cerebra staff.

Dr Ross Head to talk at Naidex

Naidex is Europe’s largest disability and independent living event and will take place at the NEC on 25th and 26th April.

We are delighted that Dr Ross Head from our Innovation Centre (CIC) has been asked to speak at such a high profile event. His seminar will take the form of a case study review of three CIC products: a seated tandem surfboard; triathlon equipment which enables a young girl to participate with her father;  a horse riding helmet for a young man with unique head shape. He will also be giving an overview of some the great products his team design and make.

The event is completely free to attend and you can find out more and book your place here.

You can also follow the event on social media #WeAreAble.

Ross graduated in Product Design BSc with first class honours in 2001, and subsequently a PhD in Digital Design Methodology and Glass Product Design at Swansea Metropolitan University. He then became one f the founding members of staff for Cerebra Innovation Centre, whilst lecturing part time within FADE.

Dr Head has expertise in all areas of Product Design, specifically but not limited to design for children with additional needs including R&D, ergonomic studies for children with differing postural and dimensional needs, CAD, field testing, prototyping and manufacture.

He also liaises with industry partners to secure licensing agreements and develop manufactured products.

Furthermore, Dr Head was involved as Company Supervisor for a PhD scholar under the KESS scheme. This revolved around data capture for product concept design for children with additional needs.

Accredited workshops on Accessing Public Services, DLA and Sleep

Guide to claiming disability living allowanceWe are delighted to announce that our workshops on Accessing Public Services, DLA and Sleep have been accredited by the CPD Certification Service.

This means that our information workshops have reached the required Continuing Professional Development standards and benchmarks and that the learning value of each has been examined to ensure integrity and quality.

Our research has shown that families can experience difficulties accessing public services, completing the Disability Living Allowance (DLA) forms and with their children getting a good night’s sleep. Our workshops aim to give families the knowledge, skills and confidence they need to tackle these issues.

Accessing Public Services

While UK law provides powerful rights to accessing health, social care and education support services, the law can be complicated and difficult to understand. Even when you know what your rights are, it can be daunting, exhausting and sometimes intimidating to challenge public officials. This workshop can support you by unpicking potential problems and give you the tools you need to resolve them. The workshop will help you get the best out of our Accessing Public Services Toolkit.

DLA

This workshop will help you to use our DLA Guide to complete the DLA claim form. It also looks at the common problem areas, busts some of the myths around DLA and gets you to assess whether you’re getting the correct rate of DLA for your child (if you already claim it). If you’re not, we’ll talk about how to go about challenging the decision. The workshop also takes a brief look at related benefits.

Sleep

We will help you to understand and support your child’s sleep. The workshop looks at why sleep is so important, what can affect it and strategies to improve problems such as settling, night waking, early rising and sleeping alone. The workshop supports the advice given in our Sleep Guide and by the end of the workshop you should feel more confident to tackle your child’s sleep problem.

If you would like to host one of these workshops please call us on our Freephone number 0800 3281159.

Do you want to see better services for people with neurodevelopmental conditions?

We are working with other charities to understand how we can better support children with brain conditions and their families and we need your help.

We want to understand what life is like for the people we represent. We want to learn about the realities of living with more than one neurodevelopmental condition (diagnosed or not).

Our partners in this project include Autistica, the Neurological Alliance, MQ, Tourettes Action, Afasic, Epilepsy Action and many more. We all want to make sure families are properly supported. Working together we have developed a survey to understand the reality of life with a neurodevelopmental condition. Our goal is to understand what support and services are making a difference and where there are gaps in the help families need.

The more responses we get, the more we will understand about how to improve the support families receive and how we should be targeting our work.

So if you want to see better services for people with neurodevelopmental conditions have your say here.  It would be great if you could also share it with your family, friends and other contacts.

Thank you. Together we can work wonders for children with brain conditions.

#neurosurvey

 

 

James’ trike ride is a winner!

James on his trike

James on his trike

Nine year old James Miles is our latest fundraising Superhero! James raised an incredible £512 for Cerebra so that we can support other children who are living with cerebral palsy.

James spent the summer holidays training for his challenge and, at the end of September, set off on a two mile ride on his specially adapted trike. James showed true determination to complete the ride, which was a huge achievement for him.

His mum Kathryn said “We were overcome by how generous everyone was at the end of last year to enable James to have this fantastic trike and we thank you all from the bottom of our hearts, he has loved riding it. But now it is James’ turn to give something back so we are hoping you can help James raise money for Cerebra”.

Gareth receives a cheque from James

Gareth Owens from Cerebra recently paid a visit to a special school assembly where he met James and his mum and received a cheque for a whopping £512.

Thank you James – your support means that we can help more families who have children with a brain condition to discover a better life together.

 

Birmingham Experts Launch Pioneering Autism Research

Leading researchers from Birmingham are today (25th October 2017) launching a major, new UK study into autism and mental health problems – and are calling for autistic people and their families to get involved.

The research is a collaboration between leading investigators at the Cerebra Centre for Neurodevelopmental Disorders at the University of Birmingham, Aston University, and leading UK autism research charity, Autistica.

An estimated 56,000 people in the West Midlands are autistic (1,2*) – and nearly eight in ten (79%) will experience a mental health problem (3).

The research will be the first in the UK to develop an assessment tool to distinguish emotional distress caused by anxiety and depression from distress caused by physical health problems, among minimally verbal autistic people with learning difficulties. Autistic people with learning difficulties are more than 40 times more likely to die from a neurological disorder than the general population – and twice as likely to commit suicide (4).

Commenting on the new research, which will be announced at an autism science talk in central Birmingham later today, Dr Jane Waite, Lecturer in Psychology, School of Life and Health Sciences at Aston University, and one of the study’s lead investigators, said: “People living with autism and their families have highlighted that managing mental health problems is their number one priority.  But, until now, the mental health needs of autistic people, particularly those with learning difficulties, have been seriously neglected due to a lack of research and support.”

Chris Oliver, Professor of Neurodevelopmental Disorders and Director of the Cerebra Centre for Neurodevelopmental Disorders, University of Birmingham, said: “People with learning difficulties may be unable to describe how they are feeling and others may think that changes in behaviour and emotions are caused by things other than anxiety and depression. It is therefore essential that we develop better tools to help us detect when autistic people are experiencing distress and mental health problems and ensure services include everyone and they receive timely and effective help.”

Autistica is urging the local autistic community to get directly involved in this and other planned UK research projects by signing up to its autism research network, Discover. Visit autistica.org.uk/take-part . Discover will link the local autistic community with the Birmingham investigators, as well as other top UK research centres.

Jon Spiers, chief executive of Autistica, said: “We are delighted to be working with the Cerebra Centre on this pioneering new research.  By helping more people sign up to take part in autism research projects, we can make sure research addresses the challenges that families and autistic people face, and provide them with the information, services and care that they need.”

Autistica, together with its research partners, aims to recruit 5,000 autistic people, their families and carers to Discover by the end of 2017.

Notes

About the Cerebra mental health study

A key objective of the study is to improve the identification of mental health problems in autistic people with learning difficulties, who currently represent over a third (38%) of the UK autistic population. This study focuses on designing a practical and effective assessment tool for use in the clinic to identify anxiety and depression in autistic people with learning difficulties. This important research is a collaboration between the University of Birmingham, Aston University, Coventry University, Birmingham Community Healthcare NHS Trust, Coventry and Warwickshire Partnership NHS Trust and the leading UK autism research charity, Autistica.

About the Birmingham Science Talk

The announcement regarding the new Cerebra research will be made at the first of a series of autism events taking place in Birmingham during October and November hosted by Autistica in collaboration with Deutsche Bank. The events are free and anyone can attend. For further details on the talks including location and timings, click here: https://www.autistica.org.uk/get-involved/autism-talks

About autism

• Autism is a spectrum of developmental conditions. The condition changes the way people communicate and experience the world around them. Every autistic person is different. Some are able to learn, live and work independently but many have learning differences or co-occurring health conditions that require specialist support.
• It is estimated that 1 in every 100 people in the UK is autistic.1,2
• Research suggests that the differences seen in autism are largely genetic, but environmental factors may also play a role.
• There’s currently no ‘cure’ for autism, and indeed that is not a priority for the autism community, but there are a range of specialist interventions that aim to improve communication skills and help with educational and social development.

About Autistica

Autistica is the UK’s leading autism research charity. Autistica’s research is guided by families and autistic individuals, with the aim of building longer, happier, healthier lives for all those living with autism. They support research into autism and related conditions to improve autistic people’s lives and develop new therapies and interventions. Since 2004, Autistica has raised over £12 million for autism research, funding over 40 world-class scientists in universities across the UK. For more information visit: https://www.autistica.org.uk/ Twitter @AutisticaUK

About the University of Birmingham

The University of Birmingham is ranked amongst the world’s top 100 institutions. Its work brings people from across the world to Birmingham, including researchers, teachers and more than 5,000 international students from over 150 countries.

About Cerebra

Cerebra is the charity that works with families who include children with brain conditions. They listen to them, they learn from them, they work with them. They carry out research, they design and innovate, they make and share. What they discover together makes everyone’s life better. For more information visit their website: www.cerebra.org.uk.

About Aston University

Founded in 1895 and a University since 1966, Aston University has been always been a force for change. For 50 years the University has been transforming lives through pioneering research, innovative teaching and graduate employability success. Aston is renowned for its opportunity enabler through broad access and inspiring academics, providing education that is applied and has real impact on all areas of society, business and industry.

References

* Figure extrapolated from UK population data for West Midlands
1. Brugha, T. et al., (2011) Epidemiology of Autism Spectrum Disorders in Adults in the Community in England. Archives of General Psychiatry. 68 (5), 459-66.
2. Baird, G., et al., (2006) Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP). Lancet 2006; 368: 210–15
3. Lever, A. G. & Geurts, H. M. (2016) Psychiatric Co-occurring Symptoms and Disorders in Young, Middle-Aged, and Older Adults with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders. 46, 6, 1916–30
4. Personal Tragedies, Public Crisis: The urgent need for a national response to early death in autism. A Report by Autistica, March 2016. Accessed at: http://s3-eu-west-1.amazonaws.com/autistica/downloads/images/article/Personal-tragedies-public-crisis-ONLINE.pdf#

Cerebra Research Support Network – Help us make a difference

We are looking for people with lived family experience of childhood brain conditions to join our Research Support Network. Can you help us to make a difference?

What is the Research Support Network?

Our Research Support Network is made up of people with lived family experience of childhood brain conditions. That could be as a parent, carer, or sibling or as a young person directly affected. As well as funding research, we work directly with families. By listening to families, we fund research that uncovers knowledge they want. Drawing on research, we help families develop the knowledge, skills and confidence they need to overcome challenges. Our Research Support Network will help us to listen to families and to translate research into resources that help families.

We’re looking for people who:
• are passionate about research and would like to learn more;
• can listen and learn from others;
• are committed to considering and representing the needs of families that have children with brain conditions.

What does it involve?

We need enthusiastic, thoughtful people who want to make a difference. Your role in the Research Support Network will involve reviewing and providing feedback on:
• materials developed by us for parents;
• the impact of our current research projects; and
• grant applications invited by us for funding by Cerebra.

What will you actually do?

As a Research Support Network member you will be invited to review our draft publications, participate in grant application reviews and evaluate the impact of our current research.

Reviewing draft publications will involve reading and commenting on draft publications, within an allotted time frame, before they are finalised. Your views on readability, relevance and presentation will be invited and fed into the final design of the information we provide for families.

Grant reviews will involve reading, evaluating and submitting scores and comments on grant applications within an allotted time frame. Your views will feed into final grant awarding decisions. The applications will contain a detailed summary of the proposed research in plain English and you will be asked to comment on whether the research is relevant and important to children and young people affected by brain conditions.

Evaluating the impact of our current research will involve reviewing documentation and, potentially, site visits.

Most Research Support Network activities can be done from home, but may occasionally involve meetings and site visits. You can volunteer for just one or two of the three activities or all three. This is a voluntary role but out-of-pocket expenses, including travel, subsistence and childcare to attend meetings and site visits, will be paid. You can manage your commitment by limiting how much you want to be involved in. Time constraints will apply to allow us to complete our work and deliver on our commitments in a timely manner.

Are you eligible?

We are looking for people with lived family experience of childhood brain conditions. That could be as a parent, carer, or sibling or as a young person directly affected. You do not need to have a scientific or medical background as all documentation will be written in a ‘plain English’ format.

If you are interested in becoming a member, or just want more information, please contact Georgia Mappa at GeorgiaM@cerebra.org.uk

 

Cerebra’s Mission

We believe that every family that includes a child with a brain condition will have the chance to discover a better life together.
We listen to families that have children with brain conditions. We use what they tell us to inspire the best research and innovation. Then we help them put the knowledge into practice so they can discover a better life together.
By ‘brain condition’, we mean any neurodevelopmental disorder (NDD) that affects the developing brain, including those caused by illness, genetics or traumatic injury. Brain conditions include (but are not limited to) autism, ADHD, Down’s syndrome, learning disabilities, cerebral palsy, epilepsy and developmental delay.

Our key values are summed up by three key words:
Positive: our optimism helps families see past every barrier.
Inquisitive: a spirit of relentless discovery drives everything we do.
Together: our researchers, practitioners and families go further when they travel together.

Current clinical practice identifies each condition individually with its own set of identifying characteristics, but many neurodevelopmental disorders (NDD’s) occur together and/or share similar risk factors, behaviours and challenges. Clinical thinking is changing and ‘multi-morbidity’ is accepted as the norm. We work across rather than within NDD’s, giving us a unique perspective within the charity research sector.

Accessing Public Services Toolkit Workshop Facilitators Wanted

toolkit cover image
Would you like the opportunity to help families get the knowledge they need to secure appropriate health, social care and education services to help their disabled child achieve the best possible outcomes?

We’re the charity that works with families who include children with brain conditions. We listen to them, we learn from them, we work with them. We carry out research, we design and innovate, we make and share. What we discover together makes everyone’s life better. Join us on our journey, and who knows what we could find?

Our research shows that disabled people and their families experience great difficulties accessing support services from public bodies. Our Accessing Public Services Toolkit aims to unpick these difficulties and suggest effective strategies for resolving them. It’s based on the idea that it’s not in the best interests of public bodies to have these commonly occurring problems and that most of these problems are capable of being resolved without involving lawyers and great expense.

After receiving such positive feedback on the Toolkit in England, and in response to requests from north of the border, we’ve adapted our Toolkit to make it relevant to Scotland. We now want to roll out workshops across Scotland to assist parent/carers in using this new toolkit. It can be daunting, exhausting and sometimes intimidating to challenge public officials so by running these workshops we want to empower parent/carers to not feel fearful about complaining.

If you are a parent/carer of a child with a brain condition and you’d like to be involved in helping to run these workshops in Scotland then please send an up-to-date CV and covering letter to Beverley Hitchcock  by 5pm on Thursday the 12th October 2017. Full training will be provided, along with a daily rate of £150 (£75 for a half day) and travelling expenses.


You can find full details of the role here. 

You can find out more about our legal work here.