PenCRU Childhood Disability Research Summary

pencru2PenCRU conducts a varied programme of applied research that aims to improve the health and well being of disabled children and their families.

Over the last 6 years, between 2008-2013, Cerebra have provided the core funding for Peninsula Cerebra Research Unit (PenCRU), a research centre based at the University of Exeter Medical School. PenCRU conducts a varied programme of applied research that aims to improve the health and well being of disabled children and their families. The main aims of the unit are to:

  • evaluate the effectiveness of interventions in children with brain injury and neurological disorders
  • better understand the effect of interventions on the life experience of these children, their families and parents/carers
  • provide better, accessible information to families and people with brain injury and neurological disorders about the effectiveness of interventions.

Family involvement

PenCRU runs a family faculty, which consists of families of disabled children who are interested in the research taking place at the unit. The purpose of the unit is to involve families of children with brain injury and neurological disorders in setting the research agenda and enable active engagement of parents in all aspects of the research process. Parents in the Family Faculty have been involved in a range of activities; these include developing their own ideas for research topics, helping PenCRU carry out research in progress, and helping to tell people about the research taking place through plain language summaries of research and presenting at conferences.

PenCRU is looking to engage children and young people (C&YP) in research in the future and are investigating the possibility of establishing a C&YP faculty. In 2014 the unit will pilot some engagement with a small number of schools and hope to use the learning outcomes to apply to the development of a C&YP Faculty in the future and fully involve C&YP in research activities.

Research projects

During the funding period 2008-2013, PenCRU has used the core Cerebra grant to secure further funding to conduct a varied programme of research.

James Lind Alliance – Childhood Disability Research Priority Setting Partnership
The aim of the Childhood Disability Research Priority Setting Partnership (PSP) is to identify and prioritise the most important research questions in neurodisability from the perspective of families and clinicians. The Steering Group reviewed over 800 research suggestions, once duplicated issues and out of scope submissions were accounted for; around 60 research questions are going forward for prioritisation.

Children’s Outcomes Measurement Study (CHUMS)
A NIHR funded study examining which health outcomes should be measured by the NHS to evaluate services for disabled children.

The benefits and costs of peer support
This project is evaluating the benefits and costs of providing one-to-one peer support to parents of children with disabilities.

Eating and Drinking Ability Classification System (EDACS)
A NIHR funded project to develop a valid and reliable eating and drinking ability classification system for children with cerebral palsy.

Hospital communications
This study aims to improve communication between paediatric ward staff and disabled children when they have to spend time in hospital.

Measure aspects of autistic spectrum disorder in young children (MeASURe)
MeASURe is investigating tools used to measure aspects of autistic spectrum disorder, and how well these reflect issues of importance for patients and carers.

Evaluating sleep systems for children with cerebral palsy
This review will appraise evidence of whether commercially available night-time postural management systems reduce hip deformity in children with cerebral palsy.

Sleep systems for children with Cerebral Palsy
This pilot study will test a research design for assessing how night-time postural management equipment affects sleep, comfort, pain and deformity in children with cerebral palsy.

Evaluating an intervention for mainstream schools to promote children’s positive attitudes towards disability
This study aims to use a school based survey and a literature review to facilitate the development of an intervention/educational materials for mainstream schools.

Systematic review of school based non-drug treatments for ADHD
This study aims to review non-drug interventions delivered in schools for children with ADHD.

Systematic review: involving disabled children and young people as partners in research
This project aims to carry out a literature review to find out what is currently known about involving children and young people as partners in research.

Children and young people project
This work is looking at how disabled children and young people can get involved in research and PenCRU activities.

What’s the evidence?
‘What’s the Evidence?’ reports summarise what is known about the effectiveness of a number of treatments and therapies, to give families access to the best current evidence to help them make decisions about their children.

There is a wealth of useful information on the PenCRU website about what research is, how families can get involved in research and also Plain English summaries of some of the research conducted at the unit.

The next six years

Cerebra are delighted to be in a position to provide the core funding for Peninsula Cerebra Research Unit (PenCRU) for a further 6 years between 2014-2019, to continue the fantastic work they do building capacity in the area of childhood disability,  involving families in research and addressing research questions about interventions that really matter to families.

If you would like to read more about the research activities at PenCRU, their full 2013 Annual Report is available here.

Legal Research Team Makes a Difference

Oliver on the busOur new Legal Entitlements Research Project at Cardiff Law School is already making a difference to families.

Oliver is a 10 year old boy with Down’s syndrome and severe learning difficulties. Oliver’s parents were struggling to get transport for their son to his new school as they live in a rural area, 1.8 miles from the school. Their local authority applies a policy that all children who live less than 3 miles away from their school will not be eligible for funded travel by the local authority. But the route Oliver needed to take was unsafe. It involved walking through lanes which in some sections were single track with no passing places or lay-bys, a lack of street lighting and formal pavements, and the surface was in poor condition with many potholes.

Oliver and his parents had to cope with high volume traffic at peak times which would coincide with times when lighting was poor. Oliver’s disability also makes him prone to running off, becoming easily distracted, especially by potholes, and becoming distressed by loud noises. Oliver also has a brother who attends a different school in the opposite direction and taking both children at the same time would cause considerable distress to Oliver due to his past association with the school. Despite many attempts at trying to resolve the issue themselves with supporting letters from Oliver’s GP, social worker, paediatrician, his old school and his learning disability nurse, their applications and appeals continued to be turned down. This is when they decided to contact Cerebra’s Legal Entitlements Research Project.

The opinion of the team working on the Project was that the local authority had acted unreasonably in requiring Oliver to walk the prescribed route to and from school and had failed to consider the impact of his disability. The local authority had not acted in compliance with its obligations towards disabled children under the Equality Act 2010. The local authority had also applied a blanket policy and not considered the impact of Oliver’s disability on his ability to walk to school.

“We are delighted with the outcome of Oliver’s case and know that the provision of transport to and from school will make a huge difference to him and his family. The students worked extremely hard and are thrilled that their work has had such a positive impact. They were very touched that Oliver’s mum sent a photograph of Oliver on the school bus and this made their work feel even more personal” – Hannah Walsh, Cardiff Law School.

As a result of the letter written for the family by Professor Luke Clements and his team, the LEA has agreed to provide transport for Oliver to and from school. Oliver’s mum has shared a photograph with us of a happy little boy travelling to school safely.

With huge thanks to Cerebra and Cardiff Law School, Oliver has been going on the bus to and from school for just over a month now. Oliver loves going on the bus and this means he arrives at school much calmer and less stressed than he would if he walked. We were given excellent legal advice and access to a specialist in school transportation; this allowed us to present a much stronger case that resulted in success following our own previously unsuccessful application and appeals” – Oliver’s parents.

Public bodies in the UK have certain duties to provide health and social care support for disabled children. Sometimes, however, families experience difficulties accessing these rights. The series of ‘rights’ advice guides commissioned by Cerebra, are designed to help families who are experiencing problems with statutory agencies, such as social services and the NHS.

If you need additional support, the Cerebra Legal Entitlements Research Project may be able to help. The programme, which is free for families, enables Cardiff University law students (supervised by qualified staff, firms of solicitors and other disability organisations) to assist families who are experiencing a problem with their local health or social care services.

Find out more about Cerebra’s Legal Entitlements Research Project.

Learning and the Brain: brief thoughts on a huge subject.

learningWe give some thought to how knowledge of how the brain develops could be used to influence teaching methods and encourage learning.

It is easy to realise that as children learn, the process of learning and the ways their brains work will be affecting each other. Yet much work still needs to be done to translate what is known from evidence about the brain into educational practice. There is increased interest today in an analytical approach to this question. For example The Independent recently reported that a school in New Zealand tried abandoning the rules and safety measures they had in place in the playground. They found that pupils became more interested in their play, were better behaved and concentrated better in the classroom. An involved health researcher explained these effects in terms of the brain, saying that by actively taking risks in that environment, the children were developing the brain’s frontal lobe and learning to calculate consequences.

Particularly in young childhood, connections between neurons are developed (sometimes called brain “wiring”) and others are not developed, depending on interaction between genetics, environmental factors and experience. As time goes on, a process of “synaptic pruning” tends to develop stronger existing connections and to drop weaker ones. Neuroscience for Kids (University of Washington) briefly describes the general neuronal basis of learning. There are also changes that take place at the neuronal level when the brain tries to recover from an injury, and there are those who have physical and/or chromosomal differences that influence the way their brain develops.

What about learning academic subjects? Could neurological and neuropsychological knowledge aid teaching, including special techniques for those who have brain injuries or different “wiring” to learn as well, perhaps in different ways? Is it possible to gear teaching to a child’s maturity level, taking account of the ways in which functions within the same child reach stages of maturity at different times?

There is a description of how brains mature, and how this can be taken account of in the classroom as well as at home, (Margaret Semrud-Clikeman, Michigan State University, and American Psychological Association). The history of current theories in relation to education is comparatively recent and still in formation. They have been informed by brain research from the late 20th century onwards and data from brain scanning techniques (MRI etc.) that have become more fine-tuned. Theories about how we learn in general go back much further.

learning2Either where a child is having some difficulty with learning, or where a blossoming strength or talent appears that the child might be able to utilise further, parents often look for specific educational systems that might address them. Obvious examples are the techniques and computer programs for helping students with dyslexia to read etc., some of which are used by schools, some at home and some by specialist organisations. A specific example of a method based on brain research and theory is Paula Tallal et al’s “Fast ForWord™”.

Many curricula, methods and books are disseminated and marketed to address quite a wide variety of learning-related problems and questions, some of which overlap with the field of therapy, and many of which label themselves as brain-based, at least in part. (“Brain-based learning” is more of a descriptive term, rather than the name of one particular method, although it tends to be associated with a particular system used in the USA.)

Providers will often describe how they believe their methods interact with the brain. Interested parties will ask what are these beliefs based on; is there sound evidence that the brain works in the ways suggested by the proponents of the method, and that the method works in the way they believe it does? How constructive (or otherwise) might one of these methods be for a particular child, and how much time and money could be worth investing in it?

These methods are likely to have been put forward by people who believe in their efficacy, based on a mixture of theoretical research and experience with teaching children. In some cases there is a behavioural component, designed to make children respond in particular ways – would these be helpful to any child or could an autistic child, for example, perceive and respond to this component in unexpected ways?

But how else can a family or teacher looking for something to help a specific child, and beginning to ask questions like this, set about evaluating one of these methods? The principles suggested in relation to therapies by the Peninsula Cerebra Research Unit based at the University of Exeter, (under “Searching for evidence on the Internet”) would help as an information-gathering and decision-making tool.

Where there is evidence available, how does that evidence base itself on children like, or unlike, the child in question? There are also practical considerations such as, how would the method fit in with the rest of the child’s education, lifestyle and analyses of their needs such as their educational psychology report? What do the teacher(s) and/or the SENCO think of it? If there is a specialist organisation for the child’s condition or learning difficulty, do they or their member families have any experience of it?

Related subjects

A related set of products and methods comes from the “brain training” industry, which is largely concerned with the field of personal development, aiming to target aspects of cognitive performance, language learning etc. The terms “evidence-based learning” and “evidence-based training” can also be found, the evidence often being related to data about the outcomes of the learning.

An important linked area, which is another huge subject in itself, is that of memory. Many children with additional needs have seemingly puzzling memory traits, such as weak memory retrieval, remembering something at one time and not at another time, or being slow to process learning. A topic for another time, perhaps!

William’s story

WilliamWilliam’s mum tells us about the experiences of her family and how Cerebra have helped.

“William was born very premature at just 27 weeks and weighing only 1 lb 3 oz at St George’s Hospital, London. William had to be delivered by emergency C-section after I developed pre-eclampsia and HELLP syndrome. He was rushed to the neonatal unit, where he stayed for four months until he was stable enough to be transferred to his local hospital in Yorkshire for a further four months. He had a very stormy ride on the neo-natal unit, needing lengthy ventilation and suffering from liver problems, feeding issues, many infections and epilepsy.

william-babyAfter 8 months, with the help of amazing consultants, doctors and nurses, he finally arrived home solely tube fed and on constant oxygen. Only 26 hours later he was rushed back to his local hospital and transferred to Sheffield paediatric intensive care unit (PICU) in respiratory distress. Put on an oscillator ventilator with nitric oxide and very unstable the consultants arranged for him to be transported to Leicester and put on life support. Fortunately he improved on the journey down, escaping the machine. William spent a further month in Sheffield receiving the best care, being weaned off the ventilator and gradually getting well enough to come home. William had a further three months in and out of hospital unwell with viruses and feeding issues.

In October 2012 he was rushed to Sheffield PICU after going into respiratory failure due to aspiration pneumonia. The staff on the PICU did all they could for William for almost two days, but couldn’t stabilise him. Rushed to Newcastle Freeman hospital he was put on an ECMO (extracorporeal membrane oxygenation) machine and we were told to prepare for the worst.

However, as always William had other ideas. He managed to come off the machine after six days, and be transferred to Sheffield again.  Once again, the staff were fantastic, and William received the best possible care and was sent home.william-buggy

Since October 2012 William has had many admissions to Sheffield hospital due to illnesses, surgery and his epilepsy.  A bleed on the brain, thought to have happened before he was born, resulted in a static brain injury that will affect his development as he grows.  He suffers with epilepsy, is fed via a gastric tube and is severely globally delayed and visually impaired. Despite his problems he has exceeded all our expectations and is now crawling and pulling up to furniture.

Because of how vulnerable his problems make him he has had to stay indoors for much of the winter, so many days are spent in his playroom with sensory equipment. We discovered Cerebra on a Facebook support group for parents with children with additional needs. He loves bike rides and being outside, so we applied for a grant for a specialist bike just for him. As well as many walks and bike rides he loves feeding the ducks.

William is a true fighter. A gorgeous, content and loved little boy.”

William is just one of many children who have been helped by Cerebra. We can only keep providing help, through direct support as well as through funding vital research, with your support. Check out our fundraising pages to find out how you can make a positive difference today.

Cerebra’s Oxi-Gem

Plans for the oxy-gemCerebra’s Innovation Centre has started 2014 with great plans and lots of new projects in the making.

Thanks to all of your great requests, we have lots of design work to do and have got stuck in already! This is the design for the new oxygen trolley for young children, the CIC Oxi-Gem.

We have designed it to include a fold-out handle, a seat for taking a rest and front wheel steering with lovely free running bearings to make easy work of pulling a 4kg oxygen cylinder. Don’t hesitate to contact us if you would like to register interest in this great product.

This is just one of many products being adapted and designed by the Innovation Centre, funded entirely by donations. If you need anything from us please don’t hesitate to get in touch – head over to the CIC page on our website for more!

Cerebra’s Legal Advice Research Project

cardiff university logoPublic bodies in the UK have certain duties to provide health and social care support for disabled children. The research evidence suggests that disabled children and their families experience considerable difficulties in accessing these rights.

It is against this background that Cerebra’s research programme has been established at Cardiff Law School. Lizi Azadegan, from the Cardiff School of Journalism, tells us how the scheme is also benefiting students at the University.

“The programme established at Cardiff University Law School, with funding and technical support from Cerebra, is a service designed to provide legal guidance to the families and carers of disabled children. The programme offers free legal advice when families experience difficulties accessing their rights to healthcare and social care services. Research by Cerebra found parents and advisers are often in need of legal support when dealing with the statutory agencies.

The law students acting in the scheme provide legal guidance and advice under the supervision of qualified staff, firms of solicitors and other disability organisations. It targets a very niche group whose issues are very specific and complex.

Students have the opportunity to identify accessible and effective procedures and these enable disabled children and their families to maximise the benefits of their legal entitlements. The programme works alongside a number of national solicitors and barristers practices who assist with the drafting of legal advice documents that parents can refer to when dealing with local authorities.

Kate Millar, who is an undergraduate law student, has been involved in the scheme since it started in September 2013. She has seen the programme develop and speaks very positively about it: “Families can get legal advice which they might not have been able to access via other means due to finances. The programme means we can offer specific legal advice for their child’s particular case and cater for the complexities of each individual case”.

All the students praise the scheme and feel it is a much needed service, given the current social and economic climate. “With the government service cuts, it is important that the people who are affected have the means to challenge services they are being refused and that these families are in need of” (Olly, postgraduate law student).

The outcome of the programme means families attain well-rounded and specific legal opinions, while students are able to learn about how to meets clients’ needs and service the community. Kate Millar said, “As a student, you don’t always have an opportunity to use the skills you have to participate in society. The scheme is great as it not only provides a practical element to our legal studies, but it gives us the chance to support the community and use our professional skills to give something back to society”.

Other students on the programme are equally positive: “It feels great to be able to apply what we learn in Law School to day-to-day activities. It gives us students the opportunity to apply legislation to a worthwhile cause and give help to someone to who doesn’t have that knowledge…the scheme helps students to engage with the fun side of law which can sometimes appear quite boring”.

“A lot of effort and planning goes into each case and producing each legal opinion draft. The final result is very rewarding for Cardiff Law School, the programme and the parents”.

“We’ve got a great team and the diversity of its members gives us a well-rounded team. Our mentor, Luke Clements, is not only an expert in his area, but a great teacher, helping support our learning and development”.

Product review – Lumie bodyclock

Lumie body clockWith the nights drawing in early and the mornings remaining dark later CIC came across the Lumie Bodyclock Active.

The Lumie Bodyclock is a dawn and dusk-simulating alarm clock that we thought might help with regulating sleep and reducing tiredness, and might even help with falling asleep in the evening.

Straight out of the box the Lumie Bodyclock Active is clearly fantastic quality and very robustly built. Upon closer inspection and setup you see the thought that has gone into the design and operation. Setup is really simple for the default system and settings, and only takes a few minutes to get to grips with fine tuning the alarm to light up your room more gradually and choose between different alarm noises including radio, birdsong and a rooster!

Additionally the light can be set to simulate a sunset which gives you a lovely calming effect winding down slowly at the end of the day. We found that waking up after or during the “sunrise” reduced the grogginess of waking up in the dark and really did help a more vibrant start to the day. This product is a class 1 medical device so Lumie have really done their research and provide a top quality product.

Here is what Lumie have to say:

“Active is an alarm clock that wakes you naturally, with a sunrise that gradually brightens; choose the time that suits you. The light is a signal for your body to ease production of sleep hormones (e.g. melatonin) and increase levels of those that help you get up and go (e.g. cortisol).

Using a dawn simulator helps keep your sleep/wake cycle on track and has been shown to boost mood, energy and productivity levels for the whole day. If you’re not a ‘morning person’ Lumie Bodyclock Active is simply a much nicer way to wake up. It’s also an effective winter blues option and a useful complement to a lightbox in treating more severe SAD.”

For more information visit

Cerebra and Leckey’s GoTo Seat have teamed up with James Leckey Design to develop and design a new and exciting lightweight portable postural support seat for Special Needs children under the Firefly brand.

The GoTo Seat is special for Leckey Design because it is the company’s first Firefly product. The new Firefly brand has been designed to operate alongside Leckey Design, offering innovative and affordable products for children and families to learn, participate, interact and grow together.

The Firefly brand is all about making a difference and supporting everyday family participation for special needs kids; bringing normality to the lives of little ones and their families.

The Firefly GoTo Seat is a lightweight, portable seating solution that can be used with children who need additional postural support and stability. At just 1.4kg, with a five-point harness and washable covers, this seating solution will allow children to participate in everyday family life whether it’s eating at a restaurant, sitting in a shopping trolley or playing on the swings in a play park or at home.

There are 3 fun colours to choose from; blue, green and pink and the GoTo Seat will come in 2 sizes with size 2 launching in the New Year. 7% of every GoTo Seat sale will go to supporting Cerebra’s amazing work.

Speaking about the GoTo Seat, one really happy mum, Kate Mellor, said; “Absolutely fantastic product! The GoTo Seat is so easy to use and has allowed us to bring Jake shopping with us anytime we want! It really has changed the way Jake can interact with people around him! His posture is excellent in the GoTo Seat”.

The new website,, will launch early December and will have a fantastic special needs blog for parents, carers and healthcare professionals to share their stories, insights and thoughts to inspire each other.