We won! Innovation Centre success

Dan, Ross and Gerallt at the St David Awards
Dan, Ross and Gerallt at the St David Awards

The Cerebra Innovation Centre (CIC), a partnership between Cerebra and the University of Wales Trinity Saint David (UWTSD), has won a prestigious award for Innovation, Science and Technology Award at the annual St David Awards ceremony organised by Welsh Government.

CIC is a team of engineers based within UWTSD’s Swansea College of Art. They design and build innovative, bespoke products to help disabled children to discover the world around them. Their designs are desirable and exciting as well as functional, promoting social inclusion and peer acceptance for the children they help. Products and advice are provided to families free of charge.

The St David Awards are the national awards of Wales and are nominated for by the public.  Now in their sixth year, the Awards offer the opportunity to celebrate the nation’s most inspiring and talented people, and to give them the national recognition they deserve.  The finalists and winners are decided upon by the First Minister of the Welsh Government and his advisers.  The winners of the nine St David Awards categories were announced at a special ceremony that took place in the Senedd in Cardiff on March 21st.

“The CIC team are so proud to have won the St David Award!” said Dr Ross Head, Product Design Manager, CIC.  “Our jobs give us so much satisfaction; to be able to help children access activities that most people take for granted is a great privilege but to be recognised nationally for our work is simply amazing. A huge thank you to all of the Cerebra staff and our supporters, without whom we would not be able to fund this work. We believe that, with a little bit of help, anything is possible – I hope that winning this award will pave the way to helping many more children across the UK.”

Tracy Elliot, Head of Research and Information at Cerebra added:  “We are delighted to have won the St David Award 2019 for Innovation, Science and Technology.  We believe passionately that the young people we support should be able to take part and participate fully in society.  We develop innovative and, above all, fun solutions to the problems and barriers parents raise with us.  Our designs aim to reduce some of the social stigma attached to disabilities by making not only functional but beautiful products that enable our young people to participate in activities that are too often closed to them.  We aim to demonstrate what can be achieved with the right attitude and support and hope that by winning this award some of our passion and belief will influence others.”

Ross and the team develop logical, innovative and fun solutions for children with brain conditions.  Their designs aim to reduce some of the social stigma attached to disabilities by making not only functional but also beautiful products for amazing young people. Some of their products are ‘one-off’ bespoke designs, others are made in small batches and some are designed with the commercial market in mind.

The ethos of CIC is simple – if they can dream big, they can do big. Never accept it’s not possible. The Team have designed lots of equipment to help children in disabilities participate in activities such as surfing, horse riding and even triathlons. Last Autumn CIC helped six-year-old Imogen, who has cerebral palsy, reach the top of south Wales’ highest mountain in a specially modified four wheeled mountain bike.

Imogen’s mum, Catherine, explained the difference the team have made to her family: “Imogen was so thrilled and excited to have completed the climb. It’s only thanks to the team at Cerebra that she’s been able to have this adventure. She’s never been able to do anything like this before because of her cerebral palsy. There have been so many times that she hasn’t been able to join in with physical activities which leaves her feeling left out. Being able to do things like this is a real boost to her confidence and self-esteem. We really are over the moon that CIC have won this Award.”

Professor Ian Walsh, Dean of UWTSD’s Swansea College of Art is extremely proud of the team, adding: “The University is delighted that the Cerebra Innovation Centre has won such a prestigious award. The innovative and inspirational work of the Centre has transformed countless lives over the past 15-years”.

If you have an idea for something that you think the team could help with, please get in touch at [email protected].

Have you been told that your child is too young to have a continence assessment?

Has your local continence team told you that your child isn’t old enough to have a continence assessment? Our new template letter could help you to make a complaint.

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 recently heard from a parent who had been told that her 4 year old son, who has autism and complex epilepsy, wouldn’t be able to get a continence assessment until he turned 5.  

We wrote a template letter to help the family make a complaint to the local health authority. We quoted some of the relevant guidance, which makes it clear that health authorities shouldn’t make children wait until they reach a certain age before they get a continence assessment.

We’ve uploaded the template letter so that other families who might find themselves in a similar situation can use it to make a complaint. We have separate versions of the letter for England and Wales.

Christine Bunting takes on her biggest challenge yet as she prepares to trek to Mount Everest Base Camp

Christine with her equipment to get her to base camp
Christine with her equipment to get her to base camp

Christine Bunting, a lawyer from specialist Court of Protection law firm Hyphen Law, is about to take on the biggest challenge of her life as she prepares to trek to the world-famous Mount Everest Base Camp to fundraise for Cerebra.

The tough trek will involve climbing the legendary Everest Trail to Base Camp a (literally) breath-taking 5,360 metres above sea level. To put this into perspective, the highest mountain in the British Isles is Ben Nevis in Scotland stands at just 1,345 metres!

As a lawyer who has worked with many families of children with acquired brain injuries and other brain conditions over the years, Christine is passionate about raising awareness and much-needed funds for us.

Christine is delighted and honoured to have received advice and support from renowned adventurer Sir David Hempleman-Adams, the first person in history to reach the Geographic and Magnetic North and South Poles as well as climb the highest peaks in all seven continents, the ‘Adventurers’ Grand Slam’.

Christine will start her trek from the southern side of Everest, putting more than 12 months of training into practice to take on the epic hike. Her training regime has included borrowing a Hypoxic Training Machine from the Altitude Centre to improve her fitness and to help her adjust to the altitude she will be facing.

Christine is flying to Kathmandu, Nepal to prepare for the adventure on 4 April and after a short flight to Lukla Airport, rated the most dangerous airport in the world due to its high terrain and steep drops, she will start her 13-day trek with fellow climbers in the heart of the Himalayas.

She will begin a two-day walk to the village of Namche Bazaar to begin acclimatising to the high altitude and then trek for another two days to Dingboche to acclimatise further before starting her four-day ascent to Everest Base Camp. 

Christine in training for the high altitude
Christine in training for the high altitude

Christine said: “I love to get out of my comfort zone for charity and in recent years I’ve skydived over Salisbury Plain and wing walked on a 1940s Boeing Stearman biplane doing  heart-stopping aerobatics to raise money for Cerebra; but this is my biggest challenge to date!

“I can’t say I am looking forward to the possibility of getting altitude sickness or the extreme cold – rumour has it that it can reach minus 15 degrees at night – but while the trek will be a significant physical and mental test for me, it’s nothing compared to the challenges that families with children living with brain conditions deal with every day of their lives.

“The climb to Everest Base Camp will be an experience of a lifetime and to be able to do it while raising funds for Cerebra’s tremendous work supporting children with brain conditions and their families is a fantastic opportunity.”

Chris Jones, Chief Executive at Cerebra said: “Families where a child has a brain condition face challenges every day. Just to learn, play, make friends, enjoy and experience the world can feel difficult, even impossible. But we don’t believe there’s any challenge that can’t be overcome. We rely on the generosity of our supporters to fund our work and so we are so very grateful to Christine for taking on yet another challenge of her own and wish her a safe and successful trip”.

If you’d like to make a donation to Cerebra, Christine has set up a Just Giving page. She is funding the trek herself, so any money raised will go directly to the charity. To donate please go to: https://www.justgiving.com/fundraising/chrisbunting1.

Christine is director of Hyphen Law, a team of highly experienced specialist lawyers and support staff working solely on Court of Protection cases relating to property and affairs and the creation and management of personal injury trusts. The team works with clients, case managers, solicitors, families and support teams to deliver services tailored to their clients’ needs.

Amelie gets transport to school, with help from our LEaP Project

Karen, who lives in Surrey, contacted our LEaP Project in January for help with a school transport problem. Her daughter, Amelie, is 11 years old and has Phelan McDermid syndrome. The local council had been providing transport for Amelie to go to a special school for children with severe and profound learning difficulties. When Karen told the council that they were moving to a new address, within 3 miles of the school, the council said that she needed to re-apply for transport.

Karen explained in her application that Amelie wasn’t able to walk to school because of her complex needs. But the council decided not to provide transport, because Karen had help from carers and access to a car, so she was expected to drive Amelie to school or accompany her on public transport.

We wrote a letter to help Karen appeal the council’s decision. The letter explained that the council had a legal duty to make transport arrangements for Amelie, who couldn’t be expected to walk to school or travel by public transport, even if Karen accompanied her, because of her disability. The letter also pointed out that parents can only be expected to accompany their child along a walking route, not by car.

At first, the council refused Karen’s appeal and insisted that she had ‘means and resources available’ to get Amelie to school. With our support, Karen contacted a manager at the council to demand a fuller response, which specifically addressed all the health and safety issues she had raised. A few days later, the council phoned Karen and agreed that Amelie was entitled to transport because of her special educational needs and disability.

Karen was very pleased with the council’s decision: “It was extremely stressful having to deal with the loss of transport at the same time as moving and to receive the default responses from the council, which really felt like we hadn’t been listened to. I was very lucky to be supported by our school, social worker and GP and the LEaP Project and I think with the combined effort we got the right result. I am so happy that Amelie will be able to get to school in a way that is best for her.”

Karen had to challenge the council twice before getting transport for Amelie, because the council didn’t consider her appeal information properly. We know from our experience on the LEaP Project that some councils have refused transport twice or three times before putting things right.

If you’re in a similar situation, you can read our Parent Guide on School Transport in England and use our updated school transport template letter to challenge a decision. We also have a parent guide and template letter for parents in Wales.

If you’re still unhappy after using the council’s appeals process, you also have the right to complain to the Local Government & Social Care Ombudsman or the Public Services Ombudsman for Wales.

Cerebra Innovation Centre shortlisted for a St David Award

L - R: Gerallt, Tracy and Ross accept the St David Award nomination
L – R: Gerallt, Tracy and Ross

The Cerebra Innovation Centre (CIC), a partnership between Cerebra and the University of Wales Trinity Saint David (UWTSD), has been shortlisted for a prestigious St David Award.

CIC is a team of engineers based within UWTSD’s Swansea College of Art. They design and build innovative, bespoke products to help disabled children to discover the world around them. Their designs are desirable and exciting as well as functional, promoting social inclusion and peer acceptance for the children they help. Products and advice are provided to families free of charge.

The St David Awards are the national awards of Wales. The team have been nominated for the Innovation, Science and Technology category, which celebrates those who have developed techniques or solutions that meet new requirements.

The ethos of CIC is simple – if they can dream big, they can do big. Never accept it’s not possible. The Team have designed lots of equipment to help children in disabilities participate in activities such as surfing, horse riding and even triathlons. Last Autumn CIC helped six-year-old Imogen, who has cerebral palsy, reach the top of south Wales’ highest mountain in a specially modified four wheeled mountain bike.

Imogen’s mum, Catherine, explained the difference the team have made to her family: “Imogen was so thrilled and excited to have completed the climb. It’s only thanks to the team at Cerebra that she’s been able to have this adventure – she’s never been able to do anything like this before because of her cerebral palsy. There have been so many times that she hasn’t been able to join in with physical activities which leaves her feeling left out. Being able to do things like this is a real boost to her confidence and self-esteem. We really are over the moon that CIC have been shortlisted for this Award.”

Prof Ian Walsh, Dean of UWTSD Swansea College of Art said: “The University is delighted to hear that the Cerebra Innovation Centre has been shortlisted for such a prestigious award. The innovative and inspirational work of the Centre has transformed countless lives over the past 15-years”.

Dr Ross Head, Product Design Manager at the Cerebra Innovation Centre added: “It is such a privilege to be nominated for an award for doing a job that is so fun and rewarding to do anyway. I hope this will draw attention to our work so that we can continue to grow and help more children achieve more amazing dreams!”

The winners will be announced at the St David Award ceremony which takes place on 21st March.

World book day in our library

Thursday 7th March is World Book Day and we have lots of story books that are suitable for children of all ages available to borrow from our Library.

Young children

Sometimes by Rebecca Elliott

A colourful picture book for young children.

“Toby knows his sister Clemmie is very brave.  When she has to go to hospital, they both have to help each other face their fears.  Together they make hospital a much better place “.

Avery by Marta Altes

A lovely picture book for young children

“Avery is like other birds most of the time, but sometimes, feels a bit different.  But Avery is not alone”.

The Five of Us by Quentin Blake

An illustrated story for young children

“Angie, Ollie, Simona, Mario and Eric are five fantastic friends, each of whom has an unusual ability.  Disaster strikes on a day out to the countryside but, working together and combining their individual powers, the Fantastic Five save the day”.

5 to 8 year-olds

Ellie Bean the Drama Queen: how Ellie learned to keep calm and not overreact by Jennie Harding

A story explaining sensory processing disorder for 5 to 8 year olds.

“This cute children’s book offers insights into Ellie’s “dramatic” behaviours and provides easy sensory answers for parents and teachers alike.  Ellies’s story brings home what it’s like to grow up with sensory issues and helps a child to understand that he or she is not alone”.

Ian’s Walk A Story About Autism by Laurie Lears

A story explaining autism for children aged 5 to 8

“Julie can’t wait to go to the park.  But she’s not sure she wants to take her little brother, Ian, who has autism.  Ian does things differently.  At the park, he doesn’t like the tickle of a soft feather, but he loves to lie down and press his cheek against the hard sidewalk.  It’s hard for Julie to understand Ian.  But when he gets lost, Julie discovers that seeing the world differently, through Ian’s eyes, is the best way to find him”.

My Brother is Autistic by Jennifer Moore Mallinos

An illustrated story for siblings aged 5 to 8 who have a brother or sister with autism

“Having a brother with autism can sometimes be hard, especially when he freaks out in front of other kids at school.  It can be so embarrassing!  Maybe if the kids knew more about autism they’d stop teasing and making fun of Billy and just be nice”.

8 to 12 year-olds

Lulu and the Wishing Star by Pippa Fern

A heartwarming story about disability for children aged 8 to 12

“When Lulu and Sam make a wish to the Wishing Star, the young and trendy, guitar-playing fairy, Rock’n’roll-rockety-roo’ appears.  She grants their wish (well… sort of) but in her rush to catch a rock concert, forgets to leave instructions.  Can Lulu and Sam figure out their newfound powers in time to save their friend?”

Jumpin’ Johnny Get Back to Work! A Child’s Guide to ADHD/Hyperactivity by Michael Gordon

A fun story explaining ADHD for 8 to 12 year olds

“This story is told by a youngster who truly struggles to achieve, but doesn’t always meet with success and acceptance.  Although he moves through the day experiencing frustration and embarrassment, he still maintains his sense of humour and spirit of determination”.

The Panicosaurus by K I Al-Ghani

A story about managing anxiety for children with Asperger Syndrome aged 8 to 12

“Sometimes the Panicosaurus tricks Mabel’s brain into panicking about certain challenges, such as walking past a big dog on the street or when her favourite teacher is not at school.  With the help of Smartosaurus, who lets her know there is really nothing to be afraid of, Mabel discovers different ways to manage Panicosaurus, and defeat the challenges he creates for her”.

If you’d like to borrow any of these books, completely free of charge, contact our librarian on [email protected]. To find out more about the library check out our library page.