Eleven year old Alex rides the waves on a surfboard designed by our Innovation Centre

Alex having a great time surfing at The Wave Project

The team at the Cerebra Innovation Centre are dedicated to designing and making bespoke products that enrich a child’s life, giving them new experiences that wouldn’t otherwise be possible.

Created in partnership with Roger Cooper, our surfboard was designed for children with limited mobility and brain conditions. It allows wheelchair-bound adrenaline junkies to get out of their chairs and onto the water. The tandem design includes a supportive seat for the child and plenty of space on the back for an experienced surfer to steer it in the right direction. They have been a great success providing endless hours of fun to thrill-seeking children who could not otherwise experience the benefits and thrill of catching waves.

The latest to try one of the boards was 11 year old Alex who has quadriplegic athetoid cerebral palsy. Alex is from Eastleigh in Hampshire and was on holiday with her family in south Wales when she took part in a session organised by The Wave Project.

Following Alex’s session her mum Charlene told us: “Thank you so much.  Alex absolutely loved it and even asked if we could move to South Wales so she could surf more often. The photos of the day are amazing and, to be honest, brought a little tear to her eye. To watch her take part in something we thought she would never be able to access is just incredible and we really cannot thank you all enough.”

The Wave Project brings people together through surfing. Their evidence-based surf therapy programme is proven to help young people feel less anxious and more positive. They also run beach school projects to help children feel more engaged in education. Working with partner organisations and some amazing volunteers they are changing lives together.

Holly Sayce, South Wales Coordinator at The Wave Project said: “The boards have been essential to us as a charity in making our service fully inclusive of all abilities and disabilities. Used alongside our beach wheelchairs we can offer young people with mobility issues the chance to participate in our surf therapy courses or one-off private sessions.

The board most recently given to our Cymru project by Cerebra was used during our summer sessions and even on a chilly day at Aberavon beach just last week. We are looking forward to our next surf therapy year starting in Spring 2019 to see even more young people use the board and take part in our sessions.

Kindly stored by one of our partner surf schools, we are able to take the board to both of our delivery locations at Aberavon and Porthcawl. We now have three amazing Cerebra boards across our UK projects allowing young people in many locations to access surf therapy and experience the many benefits.

We are super grateful to Cerebra for this amazing piece of kit and for their determination and enthusiasm around improving accessibility for children and young people.”

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.  At Cerebra we believe that every challenge can be overcome.

Our Innovation Centre is a partnership project with the University of Wales Trinity St David.

Special Educational Needs reform in Wales

The special educational needs (SEN) reforms in Wales are now a little under a year away from their introduction. The Additional Learning Needs (ALN) and Educational Tribunal Act was passed in January of this year and will begin to be rolled out from the start of the new school year in September 2019.

What are the reforms?

There will be some significant changes. For instance, as the name of the act suggests, the term ‘special educational needs (SEN)’ will be replaced by ‘additional learning needs (ALN)’. This in turn means the SENCOs will be known as ALeNCOs. School/Early Years Action, School/Early Years Action Plus and statements will disappear and every child with recognised ALN will eventually be issued with a new statutory document called an Individual Development Plan (IDP). This is not to be confused with individual education plans (IEP) which will also be phased out. Unlike statements, which stop when a young person leaves school, IDPs will continue up to 25 years of age if the young person goes onto further education.

The Welsh Government has produced an overview of the new system and has compiled answers to some frequently asked questions: together they will give you a good idea of how the Welsh Government expect things to work.

What happens next?

As the transition to the new system will involve major changes for local authorities, schools and further education colleges it will be introduced gradually and the Welsh Government has produced guidance explaining the timescales involved.

The Welsh Government is also drafting a new code of practice which will be issued for consultation before the end of the year. This is likely to be a rather long document and apparently there won’t be an easy-read version. However, it is very important as it sets out in detail how the ALN system will work in practice and the Welsh Government would like feedback from parents and carers as well as professionals so we will let you know when it is issued.

In the meantime, SNAP Cymru are running some ALN reform awareness sessions for parents and carers in Mid and South-West Wales in November and December.

Our LEaP Project helps change the Welsh Government’s guidance on continence products

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.

Improving the mental health of children with brain conditions

We are launching a new project to help families of children with brain conditions access timely and appropriate mental health services. It’s aimed at families of children with rare developmental brain disorders, with a genetic cause, that carry a high risk of them developing conditions such as ADHD, autism, or schizophrenia.

We are working with The Institute of Psychological Medicine and Clinical Neurosciences (IPMCN) at Cardiff University on the project. The project will use the expertise developed at Cardiff to inform parents of the risk factors, challenges and behaviours their child may experience and give them the knowledge they need to seek early support. The project also aims to encourage genetic and mental health services to work together for the benefit of children and families.

As genetic testing becomes even more effective, cheaper and informative the numbers of children receiving a genetic diagnoses will increase. Over the last 10 years Cardiff University has built one of the largest and most detailed studies of individuals with these rare brain conditions. They have gained major insights into their development and the early indications that individual children might be autistic, have ADHD, or develop schizophrenia. The earlier we can intervene to support the child and their family the better the long term outcomes are likely to be.

We want to ensure that we have the evidence based information to pass onto parents in a way they can understand and use to make informed choices about what is best for their child and their family and to access timely and appropriate mental health services. At the same time we will work with clinicians so that they understand that these children face greater risks and challenges and should be able to access services at the earliest opportunity.

The understanding of genetic causes for brain disorders has many potential benefits for families, doctors and society. Genomic medicine promises greater opportunities to:

  • develop new treatments based on an individual’s biology and more precise diagnosis.
  • provide better information on anticipating and preventing serious mental and physical health impacts.
  • help parents, doctors, educationalists and wider society to better understand the underlying causes and consequences of developmental brain disorders, confronting some of the stigma and discrimination children and their families continually face.

As part of this project we will:

  • Identify other voluntary organisations with overlapping interests and involve them in the stakeholder advisory panel.
  • Develop strong partnerships with small condition specific support groups developing cooperative approaches to sharing and developing information resources.
  • Use our current skills, capabilities and family contacts to develop high quality accessible multimedia resources for families.
  • Work collaboratively with service providers to develop and test a model way of working to achieve improved health and education outcomes for children. An approach that can be shared and developed across authorities.
  • Contribute to teaching and training at the University Medical School, ensuring future generations of clinicians are better equipped to deliver services to help children with intellectual and developmental disorders in harmony with the wishes of their families.

We are currently recruiting a coordinator for this work who will hopefully start in January 2019. In the first instance our work will be focused in Wales, but will be rolled out across the UK as the project develops.

Two thirds of the cost of this ground-breaking and very exciting new project is being met by the Welsh Government and Innovate UK with the balance needing to be raised through the generosity of our amazing supporters. Our contribution to this project, which will have far-reaching effects, is just under £2,000 per month for the next three years.

If you would like to be a part of something amazing and help make a real and lasting difference to the lives of children with brain conditions and their families then please make a donation towards the costs – your contribution, no matter how small, will help others. You can donate online or call us on 01267 244206.

We’d also love to hear from you if you are the parent or carer of a child with a  brain condition who is experiencing problems with their mental health. Please contact us on sarahj@cerebra.org.uk

What can I do if my child needs me to be there in order for them to sleep?

For some children, falling asleep without an adult with them seems impossible. Perhaps your child is used to you sleeping in bed with them, or on a chair in the corner of their room. Although your presence may help them settle to sleep initially, if these same conditions are not in place when they wake up in the middle of the night, they may struggle to settle themselves back to sleep.

In order to help your child learn to fall back to sleep by themselves, you could try gradual withdrawal. If, for example, you usually sleep in the same bed as your child, try sleeping on the floor next to them. After three nights, move slightly further away. After three more nights, you could sleep on a chair next to the bed. Then try moving to the corner, then outside the room.

If your child cries and tries to get you to come into bed with them be firm. Avoid conversation and eye contact if possible. This may be very difficult at first but eventually your child will learn to fall asleep without you there.

This advice is taken from our detailed Sleep Guide. Several techniques are also explained our new Sleep Tips booklet.

If you’d like some individual advice just fill out our Sleep Referral Form and a member of our Sleep Team will be in touch.

Caldicot girl with cerebral palsy climbs South Wales’ highest peak

Specsavers directors, team members and Cerebra staff with Imogen at the Pen y Fan summit

Specsavers directors, team members and Cerebra staff with Imogen at the Pen y Fan summit

Six year old Imogen Ashwell-Lewis, who was diagnosed with cerebral palsy at birth, reached the top of South Wales’ highest peak on Sunday 7 October in a specially-modified four-wheeled mountain bike.

She was joined by more than 40 people – including Specsavers staff from South and Mid Wales, charity workers and even army soldiers – some of whom were harnessed to her to help pull and push her along.

Imogen’s mum, Catherine, says: ‘Imogen is so thrilled and excited to have completed this 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. She really is over the moon.’

The Pen y Fan challenge was co-organised by Cerebra and staff at Specsavers stores in South and Mid Wales, as part of their year-long charity partnership. The opticians are raising funds for the Carmarthen-headquartered charity, which currently supports 4,500 families across Wales.

Neil Robinson, West Wales regional chair for Specsavers, says: ‘Imogen and her family are an inspiration to us all, as are the services and support Cerebra provides to them and many other families across Wales. Watching Imogen complete this challenge is something I won’t forget in a hurry. I’m proud of our staff for giving up their time to help Imogen and the charity achieve something wonderful.

Everyone who took part at the top of Pen y Fan

Everyone who took part at the top of Pen y Fan

‘I’m thrilled we have been able to help raise awareness of the charity’s work, and hope it will lead to more young children with brain conditions discovering ways to live a better life with their families.’

In addition to our support services and research work, we also have an Innovation Centre based within the University of Wales Trinity St David, where bespoke equipment is designed and created, free of charge, to make children’s lives easier.

Imogen’s bike was a specially-modified four wheeled downhill mountain bike, designed and made predominantly for use by disabled people. It was created by Calvin Williams of Project ENDURO – a collaboration between experts at Swansea University, Gower College Swansea and the University of Wales Trinity Saint David. Project ENDURO kindly loaned the bike to Imogen for the climb and designers at our Innovation Centre made modifications to give Imogen the support she needed. Project ENDURO was supported by AgorIP, based at Swansea University’s School of Management, who are part funded by the European Regional Development Fund through the Welsh Government.

Terry Osborn, acting Head of Corporates, Trusts and Legacies at Cerebra, says: ‘We’re delighted to have joined the Specsavers team for the Pen y Fan climb. To be able to take Imogen with is us was a privilege and really does demonstrate that we don’t believe there is any challenge that can’t be overcome.

‘The invaluable fundraising support from Specsavers means that our Innovation Centre will be able to help more children to overcome their challenges and discover the world around them.’

This video shows Imogen reaching the top of Pen y Fan: