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.

 

Cerebra Innovation Centre’s Rocket Shelf Finds a New Home

Eve and her rocket shelf

Eve and her rocket shelf

The Cerebra Innovation Centre recently designed these rocket shelves. This cool piece of equipment was originally designed for a young boy, to help his mum who has to transport numerous medical machines whilst transferring him from room to room.

They were styled to suit a child’s bedroom and be more like a child’s toy rather than looking dull and medical. They feature 3 shelves, space to store an oxygen bottle, a 4 socket extension lead so all the machines are plugged in and you only need one wall socket, and 4 omnidirectional wheels so it can be moved around effortlessly. Additionally, there is ample space to wind wires and store bits and bobs.

Since the team at the Innovation Centre first started making the shelves, there have been many happy children and parents that have benefited from the design, including Eve. She and Dad Steven are currently testing out the rocket shelves and sent us these gorgeous pictures.

The rocket shelf

The rocket shelf

Steven said: “It’s amazing THANK you so much I will send more pictures as we go on amazing.”

Heidi and Tim also had a rocket shelf for their little one Charlotte, and we were so pleased when Heidi sent us in this lovely feedback.

Heidi says “The shelving unit is working out great for us and easily stores all her machinery and medical items, fitting well into the bedroom space.

The fact it is on wheels is great as we have to change her ventilators weekly which means needing easy access to the back of the machines which the wheels and open backing provides for”

Thank you to everyone for the wonderful feedback on our rocket shelves.

 

If our Innovation Centre can help you and your family just get in touch on cic@cerebra.org.uk.

New books in our library

We’ve got lots of great new books on a range of topics available to borrow now from our library.

Autism including Asperger Syndrome

AV6731 – Autism and Me (book & dvd)
Rory Hoy

L6732 – A Parents’ ABC of the Autism Spectrum
By Stephen Heydt
2017

L6728 – Toby and Sox: the heartwarming tale of a little boy with autism and a dog in a million
By Vikky Turner
2016

Communication

L6729 – Language for Thinking
By Stephen Parsons
2005

Education Teaching and Learning

L6733 – Provison Mapping and the SEND Code of Practice: making it work in primary secondary and special schools
By Anne Massey
2016

Growing Up

L6734 – When Young People With Intellectual Disabilities and Autism Hit Puberty: a parents’ Q&A guide to health sexuality and relationships
By Freddy Jackson
2016

Law and Rights

L6735 – Special Needs and Legal Entitlement: the essential guide to getting out of the maze
By Melinda Nettleton
2017

Personal Care including Feeding, Diet and Toilet Training

L6736 – What To Do About Smearing: a practical guide for parents and caregivers of people with autism developmental and intellectual disabilities
By Kate E Reynolds
2017

Sleep

L6730 – Sleep? What’s That? The incidence and impact of sleep problems in families of disabled children
By Gillian Cowdell
2007

Special Needs in General

L6737 – Achieving Successful Transitions for Young People with Disabilities: a practical guide
By Jill Hughes
2015

Therapies and Treatments including Medication

L6738 – Music Therapy for Multisensory and Body Awareness in Children and Adults with Severe to Profound Multiple Disabilities
By Roberta S Adler
2017

Children’s Books

Autism and Aspergers

C0273 – Through the Eyes of Me
Non-fiction
Age 5 and under

C0275 – Creating Autism Champions: autism awareness training for Key Stage 1 and 2
Non-fiction
Age 8 – 12

Feelings

C0276 – It’s Raining and I’m Okay: a calming story to help children relax when they go out and about
Fiction
Age 5 and under

If you’d like to borrow any of these books, completely free of charge, contact our librarian on janetp@cerebra.org.uk. To find out more about the library check out our library page.

We Become Charity Partner of The Conquest

Conquest

Conquest

We’re very excited to announce that we’ve become charity partners of the Conquest.

The Conquest is a brand new seriously bouncy inflatable obstacle course where you can run, jump and bounce your way around their six massive inflatables.

We’ve tried out the course for ourselves and it’s a lot of fun!

The Conquest have a number of events lined up around the country for 2018 but the first event is taking place on 10th December at Carmarthen Showground. It will be getting eager Conquerors into the festive spirit by asking them to come dressed as Santa – there’s even a prize for the best dressed Santa!

As the charity partner of the Conquest, proceeds will be coming to Cerebra – something we’re extremely excited about!

You can sign up to take part in the Conquest’s December event through their website. See you there!

Dustin to Run London Marathon for Cerebra and his Buddy

Dustin

Dustin is running the London Marathon in April

We’re very excited to welcome Dustin Erhardt on to team Cerebra for the London Marathon 2018!

Dustin’s story of how he came to decide to run for Cerebra is a unique and inspiring one.

Dustin lives in North Dakota in the USA and first took up running when he joined a group called I Run 4 – who match runners with buddies who may not be able to run themselves because of physical or developmental reasons.

He was paired with a little boy from the UK called Samuel who has Autism and he has been the inspiration for him taking part in a number of marathons and in April, Dustin is planning on making the journey across the Atlantic to meet his buddy and run the prestigious London Marathon!

Dustin's buddy Samuel

Dustin’s buddy Samuel

Dustin told us: “For the past two years I have had the honour of being matched with an amazing little boy named Samuel. In this time he has become like a nephew to me and we have exchanged pictures, videos, medals, encouragement and so much more. In May this past year I ran my first marathon with him with me every step.  In training every mile that got tough I knew he was right there with me encouraging me to keep going.  And now in April 2018 I have been given the amazing opportunity to travel to London and meet Samuel and run the London Marathon with him there cheering me on in person thanks to Cerebra as they have granted me a charity entry into the heavily sought-after London Marathon.  Together we can bring awareness and support for all of those that live with Autism.

My buddy Samuel’s little sister Phoebe is also a member of the IRun4 group and she has a a genetic condition called xp11.4 duplication. She has a small hippocampus on the left side of the brain that is damaged and which they believe is causing her epilepsy. She suffers from this along with autism, delayed speech and a hearing condition called hyperacusis. So for me, supporting a charity like Cerebra is not only important for all children it is very near and dear to my “Family” (we have completely adopted each other as family). I run because I can. When I get tired, I remember those who can’t run , what they’d give to have this simple gift I take for granted, and I run harder for them.  I know they would do the same for me.”

Dustin is fundraising through his Virgin Money Giving Page and has already raised nearly £1,000! You can donate through this and help him reach his £2,000 target.

The London Marathon is taking place on 22nd April.

 

Our LEaP project helps Rhiannon get the continence supplies she needs

Rhiannon

Rhiannon

Our LEaP Project helps Rhiannon get the continence supplies she needs and our template letter could help you to write to your local health board.

Our Legal Entitlements and Problem-Solving (LEaP) Project supports families who are struggling to get access to health or social care services. Louise contacted us for help with getting continence products for her daughter, Rhiannon, who’s 9 years old and has Wolf-Hirschorn syndrome. Louise and Rhiannon live in North Wales.

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. Louise was also concerned about the quality of the nappies, as the adhesive fasteners seemed to be aggravating Rhiannon’s skin and would often break off. We told Louise about some guidance published by the Welsh Government , which describes the level of service that patients can expect to receive. This guidance says that the ‘4 a day’ maximum is just a general rule and that the actual number of products supplied will depend on a child’s individual needs. The guidance also says that families can ask for a re-assessment if their needs change. Louise took our advice and asked for a reassessment.

During our research into Louise’s problem, we noticed that another part of the guidance 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 explain Louise’s situation and highlight the contradiction between the different parts of the guidance.

In response to our letter, the Welsh Government asked the local health board to address Louise’s concerns. It also agreed to update the guidance to make it clear that the number of nappies supplied should always meet a child’s assessed needs – in the meantime, it agreed to contact every health board in Wales to explain the guidance, so that other families weren’t told that they could only have 4 products a day.

The health board’s head of nursing contacted Louise and we’re pleased to report that Rhiannon is now getting the nappies that she needs. The local continence team has told Louise that it will review Rhiannon’s needs on a regular basis.

Do you live in Wales? Has your local continence team said that you can’t have more than 4 continence products a day, even if your child needs more? If so, use our template letter below to write to your local health board.

If you live in England and you’ve had similar problems to Louise, contact us at probono@cerebra.org.uk

 

Template letter to ask the local health board for more continence products to meet a disabled child’s needs.(this letter applies to Wales only):

Please change or delete the green text as appropriate.

Dear Sirs

Continence products for my [son/daughter][name]

My [son/daughter] [name] is [age] and s/he has [disability/condition].

I was recently told by [name of person] that [child’s name] is only entitled to a maximum of 4 continence products per 24 hours. However, [child’s name] needs more products than this because [explain why your child needs more because of their condition].

I recently read an article in Cerebra’s newsletter, which explained that the Welsh Government has published guidance called the “All Wales Children and Young People’s Continence Guidance and Care Pathway”. This guidance says that:

“the number of disposable products supplied per 24 hours will depend on the individual child or young person’s needs, but would normally not exceed 4 products per day without prior consultation with the Continence Service”

This means that whilst the health board can have a ‘general rule’ of 4 products per 24 hours, it should always supply enough products to meet a child’s assessed needs. I understand that the Welsh Government’s Chief Nursing Officer, Professor Jean White, is arranging a review of this guidance to make this meaning clear to all health boards.

As such, I am writing to ask the health board to:
– assess [child’s name]’s needs within [give a timescale you feel is reasonable], and
– provide a sufficient number of products to meet his/her assessed needs.

Yours faithfully

Your name

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#

New Book on Autism in Our Postal Lending Library

We have a new book available from our Postal Lending Library.Through the eyes of me

‘Through the Eyes of Me’ by Jon Roberts

ISBN 9781912213009  £6.99

Through the eyes of a young child with autism. This lovely picture book is perfect for describing autism to a very young child. If you have a young child or grandchild with autism this would be a special book to read with them or their siblings. The little girl in the book is Kya, she tells us all about the things she loves to do, the things that interest her and the things she doesn’t like. Like any child with autism she has definite preferences. It is a beautifully illustrated book with pictures that weave in and out of the text. It is written by Kya’s dad, who says “we are all unique and precious and should embrace and love those differences with all our heart and being”.

For more information about our library please email janetp@cerebra.org.uk.

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.