Peninsula Cerebra Research Unit (PenCRU)
The Peninsula Cerebra Research Unit (PenCRU) carries out a broad programme of research that aims to improve the health and wellbeing of disabled children and their families and this will relate to research that families with disabled children think is relevant and useful to their lives.
From research questions received from families or health professionals, PenCRU will look at producing What’s the Evidence? summaries from research that has been conducted elsewhere. Therefore these summaries are a combination of existing studies rather than new ones. To find out more about the Unit, please visit the PenCRU website.
To read more about the research, activities to involve families, journal publications, accessible plain language summaries of studies and conference presentations undertaken by the team, take a look at the annual report.
PenCRU runs a Family Faculty, which is 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 as partners in setting the research agenda and to enable the active engagement of families in all aspects of the research process. To find out how you could get involved, please visit the get involved section of the PenCRU website.
In the video below, parents and researchers working at the unit provide an insight into the approach taken to childhood disability research by PenCRU.
Parents who have been involved in research at the Cerebra Centre for Neurodevelopmental Disorders share their stories about raising a child with a rare genetic syndrome in the following videos.
We would appreciate it if after watching the parent story videos, you could take five minutes to complete a very short feedback questionnaire. The Further Inform Neurogenetic Disorders (FIND) project team are looking for feedback on the usefulness of the stories as a format to convey information about genetic syndromes. Click this Survey Monkey link to take part.
Rob and Jane’s video story about their son Daniel, who has Angelman Syndrome.
Salli and Nick talk about their experiences with their son Sam, who has Smith-Magenis Syndrome. This video focuses in diagnosis and the need to make professionals aware of this rare condition.
Salli and Nick talk about their experiences with their son Sam, who has Smith-Magenis Syndrome. This video focuses on dealing with issues relating to Sam’s difficulties with sleep.
Sally-Anne talks about her experiences with her son Aidan, who has Smith-Magenis Syndrome.
Steve talks about his experiences with his sons Tom and Robin, who both have Fragile X Syndrome.
GoTo is a postural support seat developed by Firefly and CIC that lets children participate in those moments that make family life special. Families worldwide use their GoTo Seats in supermarket trolleys, on planes, swings and Granny’s dining chair. They make daily tasks easier, and mean kids don’t need to miss out. It gives a little piece of independence that lets them see the world from a new perspective and feel they’re at the heart of the action.
“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.” – Kate Mellor
Find out more and buy the fantastic GoTo seat here:
Proving a hit with our members this concept offers support in a fun, beautiful and portable rocking chair to keep children moving, aiding core muscle development and soothing. We designed and developed precise snap-fit joints into the birch plywood construction using our CNC router. Giving the chairs the additional benefit of being able to pack away flat for transport or storage, they can be reassembled in only a few minutes without using any tools, nuts or bolts.
The inflatable Relaxation, Audio Visual Entertainment tent is one of our most ambitious concepts to date. RAVE is an ultraportable sleeping, relaxing or sensory stimulating space for children or adults alike. Inspired by the kitesurfing world RAVE packs away into a suitcase and can be inflated and deflated using a hand pump in a matter of minutes. We’ve included loads of attachment points inside so you can tailor the experience with all your favourite sensory toys and equipment.
Developed by Firefly using one of our most popular concepts, Scoot provides an experience of independence for many kids with mobility problems. It frees them to explore their home, play with friends, chase big brothers and race little sisters without any help. Firefly’s expert clinicians, designers and engineers worked hard to create a device that will help kids discover new skills as well as new pals. The potential for physical and cognitive development was a key factor in every element of the design.
The firefly Scooot is available here:
Families with children with a brain condition are often keen to look for more information about their child’s condition, therapies and treatments, or other services that might be available, and the legal rights that they and their child have.
The Internet provides a huge amount of information, much of which is freely available and easy to access if you know how to search. Although there are many reputable websites that provide good quality, reliable information, there are also websites which are less reliable and should be treated with considerable caution.
This guide outlines some suggestions to help you search efficiently on the Internet, and to appraise whether the websites you find present reliable and unbiased information.
First published 2011. This edition 2017. Review date 2020.
Download 'Finding and Appraising Information and Evidence on the Internet' PDF
Further information written by the team at Peninsula Cerebra Research Unit for Childhood Disability Research (PenCRU) can be found here.
Helping Families to Access their Legal Rights
Affiliation: Professor at Cardiff Law School and a solicitor
Biography: Luke Clements is the Cerebra Professor of Law at Cardiff Law School and a consultant solicitor specialising in public and human rights proceedings on behalf of socially excluded groups, primarily disabled people and Roma. He has conducted and advised on many cases before the Commission and Court of Human Rights in Strasbourg including the first Roma case to reach that court (Buckley v. UK 1996).
Luke is Director of the Law School’s Centre for Health and Social Care Law and his current research concerns the role of the law in both exacerbating and combating the social exclusion experienced by (in particular) disabled people and their carers. Luke is in charge of two taught Masters programmes: (1) Human Rights Law and (2) Social Care Law.
Luke leads the Cerebra research programme that focuses on ‘delivering legal rights and entitlements to children with neurodevelopmental disorders and their families’ for which Cerebra has endowed a research Chair at the Law School. The research analyses (amongst other things) the outcomes of the students’ pro bono advice scheme which provides practical advice to families experiencing difficulties in accessing health, social care and educational support services. Luke is a key partner in the Chronic Disorders of Consciousness Research Centre (involving York and Warwick Universities) a multi-disciplinary group of researchers studying chronic disorders of consciousness.
Luke is a leading expert on UK community care law and the rights of disabled people to social and health care support and in 2013 was the Special Adviser to the Joint Parliamentary Select Committee scrutinising the draft Care and Support Bill. Luke has also been involved in the drafting of Private Members Bills relating to the rights of carers, notably the Bills that became the Carers (Recognition and Services) Act 1995 and the Carers (Equal Opportunities) Act 2004. He is on the Editorial Boards of a number of journals, including the European Human Rights Law Review (Sweet & Maxwell), Disability and Society (Routledge), the African Disability Rights Yearbook (University of Pretoria), Child and Family Law Quarterly (Jordans), The Journal of Social Care and Neurodisability (Emerald), the Community Care Law Reports (Legal Action Group) and Social Care Law Today (Arden Davies Publishing).
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‘Problem solving: accessing decent services and support for children with complex needs and their families’
On Tuesday 7 October 2014 we held our annual conference for academics, practitioners, educators and carers. The day provided up to date, evidence-based information on the commonly encountered barriers experienced by disabled children and their families in accessing their legal rights and practical approaches to breaking down these barriers.
We’d like to thank everyone who attended and our excellent speakers for making the day a success.
Videos of the presentations and speaker slides from the day can be accessed by clicking on the the speakers names below.
Key speakers included:
- Professor Chris Oliver (University of Birmingham): Meeting the needs of children with severe intellectual disability: From response to strategy.
- Professor Richard Hastings (Warwick University): Parents’ and service users’ experiences of challenging behaviour services.
- Dr Janet Read and Dr Claire Blackburn (Warwick Medical School): Socio-economic influences on outcomes for disabled children.
- Alison Thompson (Parent and author): Accessing services: the view from a parent.
- Dr Maggie Atkinson (Children’s Commissioner for England): ‘We want to help people see things our way’.
- Nigel Ellis (Executive Director and Local Government Ombudsman): Commonly occurring problems experienced by disabled children and their families.
- Polly Sweeny (Associate solicitor, Public Law Department Irwin Mitchell): Educational, Health and Care Plans: legal rights of disabled children under the Children and Families Act 2014.
- Professor Luke Clements (Cardiff University Law School): Helping families to access their legal rights.
Please click here to see the Question and Answer Session for the day.
Sponsors for this event:
Irwin Mitchell Cerebra would like to thank Irwin Mitchell Solicitors who are sponsoring and supporting this event.
The Big Lottery Fund Cerebra would like to say a huge thank you to the Big Lottery Fund, who have provided a grant of £9,900 towards the charity’s annual conference.