Innovation Centre Create High tech horse riding helmet for young boy with unique head shape.

Tommy-Lee in action

Tommy-Lee in action

The Cerebra Innovation Centre (CIC), along with the help of BSI (British Standards Institution) have taken the challenge to help a young boy with autism and a unique head shape to fulfil one of his dreams.

16 year-old Tommy-Lee from Brighton wanted to go horse riding with his friends but his unique head shape prevented him from wearing a riding helmet. Without a riding helmet he was not allowed to participate for safety reasons.

CIC’s mission is to design and develop products that will allow children to be included in activities and daily living. They focus on careful attention to the aesthetics of the product to ensure that the child not only fits in, but in some cases becomes the object of envy of the playground.

In conjunction with the MSc Industrial Design course at UWTSD, Swansea, the CIC team used high tech equipment to develop a bespoke riding helmet for Tommy Lee.  Dr Ross Head, Product Design Manager at CIC said:

“We knew that the basic principle of a helmet is quite simple but the journey to get to a safe and useable helmet was quite complex. The basic method has been to use a 3D digital scanner to scan in Tommy Lee’s head shape, the software helps to stitch the head form together so a perfectly accurate model is achieved. Then we used this data in our computer aided design software to draw the head shape. The helmet was styled around this shape, and then the cavity was removed leaving the exact shape for Tommy Lee’s head. This model was sent to a manufacturer to machine the exact shapes from the correct density of expanded polystyrene.

The team who helped Tommy-Lee's horse riding dream come true

The team who helped Tommy-Lee’s horse riding dream come true

“Upon hearing of the project and the likely cost which would have prohibited us from continuing, a very kind gentleman, Mr Gordon Coventry from a charity called Claire’s Project, offered to help fund the cost of the helmet with a generous donation of £2200.”

Gordon Coventry explained why he was moved to donate to this project: “Watching Sophie Christiansen take part in the 2012 Paralympics dressage competition was inspiring. Her face when she claimed gold was pure happiness. There was a similar look on the face of the young boy on the surfboard recently designed by CIC. I was happy to support Cerebra to enable other children to take part in activities and sport they haven’t previously been able to access”.

CIC approached the British Standards Institution (BSI) for a quote for testing the helmet to ensure it meets the same standard that a regular helmet would be subjected to. BSI kindly agreed to fund the entire cost of the testing by way of support to get Tommy Lee horse riding and tested the helmet against the BSI Kitemark™ scheme.

Maureen Sumner Smith, Managing Director UK & Ireland, BSI said: “We’re delighted to have been able to support this really worthwhile cause through our testing services. It’s been very rewarding  to work alongside CIC to help develop this bespoke riding helmet for Tommy and we’re sure that he will now get to enjoy many hours of horse riding from this.”

CIC created six helmets in total. Five of them were sent to the BSI headquarters for testing and the remaining one was finished to a beautiful standard so that, with the exception of its size, it would be indistinguishable from another riding helmet.

The team from CIC delivered the helmet to Tommy-Lee on 25th February and he couldn’t wait to put it into action. Sue Boyce of the Three Greys Riding School, Brighton, where Tommy Lee will be going horse riding said “I am very pleased that Tommy Lee will finally be able to go horse riding with his class mates, which is something he has been looking forward to for almost a year. I am sure he will love it. It is so lovely to hear that so many people have made so much effort to make this happen. We are really looking forward to it.”

Tim Schvetz, Tommy Lee’s teacher at The Cedar Centre in Brighton said, “I am absolutely thrilled that Tommy Lee is finally getting the opportunity to ride as a result of this project. He has been so keen to get on a horse and this is his chance. This will vitalise his independence. We are all so grateful to Ross and the team for their persistent hard work to get the helmet finished”.

You can watch a report on this story which was featured on ITV Wales.

Thank you to Terry Applin for allowing us to use the lovely photos below:

Consultations – February 2016

Our monthly round-up of some current open consultations that parents and professionals who help children with brain conditions may want to give their opinions on.

“What about YOUth?”
Consultation about the results of a survey of local authority data about health behaviours among 15-year-olds. The data is about general health, diet, use of free time, physical activity, smoking, drinking, emotional wellbeing, drugs and bullying, (Dept of Health).
Closing date: 28 February 2016

Children’s social work reform
A Education Select Committee enquiry on the reform of social work for children (England).
Closing date: 4 March 2016

Resources – February 2016

ResourcesA roundup of resources that might be useful for families of children with brain conditions.

Bookwitty
A resource “bringing books, ideas and people together” on any subject. Searching for a topic brings up articles, book titles and ideas, and it is also possible to contribute to the website.

How to be a great autistic individual employer
A guide aimed at people with autism and their families who are looking to employ a Personal Assistant. One of a set of three guides relevant to autism, (Skills for Health).

Contact a Family Podcasts
Contact a Family have a series of podcasts, the latest one gives information about Carer’s Allowance.

Growing up, sex and relationships
Guide for parents of teenagers with disabilities, with an information leaflet for young people, (Contact a Family).

Curing the Winter Blues
Article about overcoming SAD (“the winter blues”) from Autism Society. Geared to adults with autism, but of interest to a wider audience.

The trials of toilet-training an older child with autism
A blog written by a parent of an autistic (Autism Awareness Centre).

Events

Rare Disease Day
29 February 2015
On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities based on the slogan: Join us in making the voice of rare diseases heard.

News – February 2016

Our monthly roundup of news relevant to families of children with brain conditions.

New NICE guideline QS107
A new quality standard covering preventing unintentional injury in under 15s.

Legislation

2016 No.48 (W.20), The Cancellation of Student Loans for Living Costs Liability (Wales) Regulations 2016
From 1 August 2016, circumstances where part of a loan liability can be cancelled.

2016 No. 44, The Children and Young People (Scotland) Act 2014 (Relevant Services in relation to Children at Risk of Becoming Looked After etc.) Order 2016
From 31 August 2016, definitions, services and information.

2016 No. 21, The Education (Student Support) (Amendment) Regulations (Northern Ireland) 2016
From 29 February 2016, small changes to the arrangements for students’ financial support.

2016 No. 45, The Secure Accommodation (Scotland) Amendment Regulations 2016
From 1 February 2016, further regulations about the detention of children.

2016 asp 3, Smoking Prohibition (Children in Motor Vehicles) (Scotland) Act 2016
Mostly from January 2016, description of the offence and penalties.

Book Reviews

Our librarian Jan reviews two of the latest additions to our Postal Lending Library.

The Skies I’m Under: the rain and shine of parenting a child with complex disabilities by Rachel Wright

2015  Born At The Right Time Publishing
£6.99  ISBN 9780993491504
L6663 in the library

Beautifully written, this book tells the story of Rachel and her husband as they come to terms with life bringing up their adored son Sam. He was born in 2005 and diagnosed with Hypoxic Ischemaemic Encephalopathy which means he has Cerebral Palsy, seizures and has to be tube fed. Some days are good, some days are bad but with the support of friends and family, their faith and their enduring courage they tell their story. Other mums and dads reading it will feel they are not alone and if any of our supporters wanted to read an account of the realities of life with a disabled child, this book would tell them.


The Brain’s Way of Healing: stories of remarkable recoveries and discoveries by Norman Doidge

2016  Penguin Books
£9.99  ISBN 9780141980805
L6660 in the library

Ever heard of neuroplasticity or neurofeedback being used to repair the brain? There are lots of accounts in this book where people have had a great deal of success using these techniques. Although many of the examples do centre around conditions experienced in adulthood there is information of how it can be used for ADD, ADHD, Epilepsy and traumatic brain injury. At a time when more and more is being discovered about how the brain heals itself, this is a very inspiring book.

You can find out more about our library and sign up to be a member on our library pages.

St John’s Chambers raise £2,400

Gareth Owens receives the cheque from St John's Chambers

Gareth Owens receives the cheque from St John’s Chambers

St John’s Chambers Personal Injury and Clinical Negligence teams hosted a child brain injury conference on 13th October 2015 in aid of Cerebra and raised a fantastic sum of £2,400.

The conference, sponsored by Nestor and held at The Marriott Royal in Bristol, was attended by over 80 delegates. Guest speakers included Dr Anna Adlam, Chartered Clinical Psychologist and academic Neuropsychologist from the University of Exeter, Dr Michael Carter, Paediatric Neurosurgeon and Claire Broughton-Welsh, Occupational Therapist and Expert Witness with Jacqueline Webb & Co. Speakers and Christopher Sharp QC, Emma Zeb and Glyn Edwards, Head of St. John’s Chambers’ Personal Injury team.

Gareth Owens, our Corporate Development Officer said: “Cerebra would like to say a big ‘thank you’ to St John’s Chambers for supporting us through their October conference. The monies raised will go towards our grant scheme where they will help fund vital equipment and services for children with neurological conditions living in the South West.”

Thank you to everyone involved in raising money for us through the conference.

Cerebra Survey Results – Diagnosis Delay and Disabled Children

Families of disabled children are experiencing substantial delays in getting an NHS diagnosis. Support services are not always offered, when they are they often do not meet the needs of the family and too few parents are being given written information when they receive their diagnosis.  Moreover parents are reluctant to complain about any of this. This is the conclusion drawn from a survey of Cerebra members carried out in October 2015.

The laws of the four nations of the UK place enforceable duties on public bodies to provide education, 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 and in consequence, in accessing good quality health, social care and educational provision.  To help address this, Cerebra fund a research programme – The Legal Entitlements Research Project.  A key element of the research is to see if effective processes can be developed to enable commonly occurring social, health and educational support problems to be resolved speedily and with the minimum of conflict.  The research programme works by accepting referrals from family members, those referrals are answered individually but records kept of the issues referred.  An analysis of the referrals identified a number of ‘generic problem areas’ and a recurring theme ‘in many of the cases’ is that of delay:

  • Delay in carrying out assessments and reaching a diagnosis;
  • Delay in putting in place support services or adaptations;
  • Delay in responding to expressions of concern by families.

To test this finding of delay further, between 21st September and 14th October 2014 we carried out a survey of Cerebra members.  While any survey can only provide a snap shot of the experience of those that answered the survey the high response rate of 1937 parents, in a three week period, is noteworthy.  Of those 1937 respondents, 1452 (or 74%) reported that they had experienced a delay that they identified as being problematic.

Summary of Survey Results

We asked ‘how long did you have to wait for a diagnosis (from your first request to the delivery of the diagnosis).  A significant number of respondents (783 or 44%) had to wait over two years for a diagnosis; of note is that 320 respondents had to wait more than 5 years.  These are substantial waits in the context of childhood.

We asked if families had been given a reason for the delay and over half (53%) were given no explanation.  Of those given an explanation, the most common explanation was ‘reluctance to place a diagnostic label on a child’ and/or ‘shortage of suitable experts/waiting lists’.

We went on to ask if the respondent felt that harm had resulted from the delay and if so, what that harm was.  1024 respondents (71%) said that they did believe harm had resulted from the delay and that harm was categorised as:

  • Impact on the health and/or well-being of the child;
  • Impact on the education of the child;
  • Impact on the health and/or well-being of carers or other family members; and/or
  • Financial impact – this was largely about taking unpaid leave, reducing working hours or giving up work.

We also asked about the support the family received after diagnosis.  The majority of respondents (53%) said they were not offered follow-up support and of those who were offered follow-up support, 37% felt that the support offered did not meet their needs.  We asked respondents if they were given any written information about their child’s condition or signposted to organisations that could assist them, 59% said they were not.

Finally we asked respondents if they had raised any concerns or made a complaint about the delay in acquiring a diagnosis or lack of support following a diagnosis.  Only 457 respondents had raised any formal concerns and of those only 108 felt their concern was dealt with to their satisfaction.

This survey demonstrates that Cerebra families:

  • are experiencing delay, sometimes a very significant delay, in getting a NHS diagnosis and these delays are causing difficulties for families;
  • support services are not always offered and/or do not meet the needs of families;
  • too few parents are being given written information or signposted elsewhere; and
  • carers are reluctant to complain, when they do complain their concerns are often not dealt with adequately.

What is Cerebra doing to help address these issues?

We are developing a toolkit that aims to support families and their advisers, who are encountering difficulties with the statutory agencies in relation to the provision of health, social care and education support services. UK law provides powerful rights to access such support services, but our research shows that this alone is insufficient. The law can be complicated and difficult to understand.  It can be daunting, exhausting and sometimes intimidating to challenge public officials.

The Toolkit aims to develop effective strategies that families can use for themselves or advisers can use with families.  Strategies that will help to unpick commonly occurring problems and to develop effective strategies for resolving them.  It is based on the idea that it is in no one’s interests, including those of the public bodies, to have these commonly occurring problems and that most such problems are capable of being resolved without lawyers and without great expense to anyone.

Keep a look out for the toolkit which will be with you soon.

Cerebra Research Presented at International USA Conference

Researcher Liz Halstead

Liz Halstead

Elizabeth Halstead, a member of Cerebra’s Research team at the University of Warwick, has been chosen to present her research findings on resilience in mothers of children with learning disabilities and autism at the Gatlinburg international conference in San Diego, California, in March 2016.

Liz explains more:

“For those of you who I haven’t been in contact with during my time at Cerebra, I am the maternity cover for the lead research officer position and based at Warwick University. For the past 4 years I have been working on my PhD at Bangor University, which is based around resilience, child behavioural problems and well-being in children with intellectual and developmental disabilities and their families  also known as The ReAL Project.

Some of you may have even participated in this research, and if so, thank you.  For my main project I did a large scale survey with over 350 mothers and fathers reporting on child behaviour, resilience and well-being.  We first looked at the mothers in the study and found that mothers who reported higher resilience had better well-being when faced with child behavioural problems.  In addition, children had better behavioural and emotional outcomes when their resilience was high.  Maternal depression was also found as a risk factor for child behavioural problems. So what does this all mean? Well it shows mothers of children with disabilities show resilience, which in this study meant:

·         Believing that positivity can come out of difficult situations

·         Creative ways can be found to alter difficult situations

·         Feeling a sense of control over your reactions

·         Being active when faced with losses encountered.

We still know very little about resilience, but this is a good start in showing some positives of having a child with a disability and we have yet to look at the fathers who participated in the study. I know a common question I get asked is what do I do now with these results we have? Well, the next steps are to tell other researchers what was found, tell parents and charities and to source more funding to continue developing this research which will hopefully lead to a useful intervention.  We want to make professionals and practitioners aware of the resilience of mothers, and what this means so this can be used in practice when working with families.

I applied to present this section of my research at this prestigious international conference in San Diego. This will have top academics and practitioners in learning disability and autism research present.  I am pleased to say my research was accepted and was also awarded the dissertation travel award.  This is the first step in getting our research out there.  In addition to myself, two of Cerebra’s academic chairs will be attending – Richard Hastings from Warwick and Chris Oliver from Birmingham. Some of Chris’s team in Birmingham, along with Chris, will also be presenting research they have done in Birmingham.

Research is a long process with many stages along the way, however we do our best to get it out there so the research you participate in leads to positive future projects and outcomes”.

Prof. Richard Hastings: My Journey into Research

Professor Richard Hastings

Professor Richard Hastings

Professor Richard Hastings  is Professor of Psychology and Education and Cerebra Chair of Family Research in CEDAR at the University of Warwick. He carries out research on various topics in the field of learning disability and autism, including: psychological problems in children and adults with autism or learning disability, families, and educational interventions. Richard is currently leading the Cerebra 1,000 Families Study.

In this article he explains the reasons why he became involved in research and why his work is so relevant to the lives of children and adults with disabilities and their families and carers.

“I’m often asked how I got ‘into’ research in the field of learning disability/autism and especially why I have an interest in research about understanding and supporting families of children with these disabilities. I always reply with a story that emphasises serendipity (a great word!), or chance.

I do not have close family members with learning disability, unlike many researchers I have met. My story starts when I was at University. I studied Psychology as an undergraduate because it looked like it would be interesting. Like many Psychology students, I thought I would like to become a Clinical Psychologist. So, in the summer of my second year I wrote to heads of clinical psychology services in areas near to my family home asking if they might have suitable work for me to do. Of course, no-one replied except for one psychologist who said that they were opening a “Locally Based Hospital Unit” for people with learning disability (“mental handicap” at the time) who were moving out of a long stay hospital (this was 1989). I was offered a summer job supporting the assistant psychologist and clinical psychologist working in this new unit.

I had never knowingly met someone with a learning disability before and had no idea what to expect. I was anxious on meeting people, and also frightened as it turned out the people living in the unit had significant levels of challenging behaviour. I was bitten, punched, kicked, and scratched regularly during that summer. At the same time, I enjoyed being with the people with learning disability. This was my first experience of the challenges and also the positives of being with people with a learning disability. I also experienced (looking back) some work-related burnout: feeling emotionally drained, but also being quite negative about people I was meant to be caring for and about their behaviour. I was very young and not prepared for this, and at that time there was no preparation and training to help me understand my role better.

For my final year undergraduate dissertation, I wrote a thesis on understanding self-injurious behaviour and decided to study for a PhD in learning disability focused on support staff working with people with challenging behaviour. I wanted to understand a little of my own personal experience, but especially how support staff thought and felt about challenging behaviour and how this might influence the way that they responded to challenging behaviour.

I enjoyed research so much that I stayed on in the academic world rather than ever pursuing further training to be a clinical psychologist. In carrying out research focused on support staff, it became apparent quite quickly that some staff experienced significant stress when working with people with challenging behaviour but other staff did not and seemed to cope much better. I realised that family carers must face some of the same challenges as support staff would, but that also there would very likely be some differences. This started my interest in family research – beginning with the impact of challenging behaviours on family members’ psychological well-being and how parents in particular coped with these challenges. Although my interest in family research started with that focus on challenging behaviour, I quickly became interested much more broadly in understanding families’ experiences of raising children (and adults) with learning disability.

In both the support staff research and learning disability family research, I noticed three general issues that have then gone on to inform much of the current research that we do. First, working with or being a family member of a child or adult with a learning disability comes with potential challenges and stress and it is important to recognise that and to devise ways to offer support to carers. However, researchers and professionals often get fixated on the difficulties and forget the positive side of working with a caring for people with a learning disability. Much of our current research is focused on positive experiences of paid and family carers, and the recognition that we can experience both negative (e.g., stress) and positive (e.g., joy) things in life at the same time.

The second general issue I noticed and that has informed research is that researchers and professionals again all too readily forget that people with a learning disability are likely to be affected by the well-being of those around them (family and paid staff). It is too often the case that we look at how the person with learning disability (and especially their challenging behaviour) affects their carers. In reality, we are dealing with a system here: people with a learning disability do pose some challenges for their carers as do the stresses of dealing with the (lack of) support from services for the person with learning disability, but equally how carers are doing affects the well-being and development of children and adults with a learning disability. We are now studying these two-way influences especially in our family research.

The third and final general point informing our current research is the lack of the representation of the views and experiences of children and adults with a learning disability in research. So, we know very little about (in research terms) how people with a learning disability understand and think about their family or perceive their relationships with paid carers. Again, this is something we are exploring in our current research.

I hope from this short article that it is possible to see how research and researchers can make a contribution to the lives of children and adults with disabilities and their families and carers. Sometimes researchers ask the questions that no-one is asking, or look at things in a way that challenges some of our assumptions. The latter is illustrate perhaps most clearly by our research looking at the positive aspects of caring for someone with a learning disability. I also hope that it is helpful to see how families and people with a learning disability themselves influence the research agenda. It is worth interacting with researchers since really interesting ideas can emerge from these interactions. My experience being a paid carer in learning disability services has continued to shape the research questions I ask, and many of our best ideas for new research come from talking with family members and people with disabilities. It is my strong belief that children and adults with a learning disability deserve the highest quality research to inform how society should be supporting them in their lives, and this is best achieved by researchers, family members, and people with disabilities talking together”.

You can get involved in the Cerebra 1000 Families Study here.

 

Young Carer Makes Heartwarming Video Tribute to Brother

Sixteen year-old Eve Hamilton is a courageous young woman who has used her experience as a young carer to her brother Cole to inspire her class mates.

Cole, who is now eleven, was born with a unique gene deletion disorder which means that he has learning difficulties, hypertonia and severe autism. He is unable to talk or understand simple instructions. He finds it difficult to maintain friendships but his sister remains his companion and constant friend through thick and thin.

Eve says of her brother: “I am forever grateful for the life I live and I would not change my brother for the world.”

As well as doing her best to enrich Cole’s life, Eve is a keen advocator for people who are “different”, taking every opportunity she can to educate her peers about Cole’s condition.

The Hamilton family

The Hamilton family

Eve’s mum Kate told us: “Eve, who is in her last year at school, has been delivering a speech to each year group in assembly about her brother and what it’s like to have a member of your family with a disability. She talks about being a young carer and not to judge people by their appearance or how they act and to be more understanding.

It’s a big deal for a teenager to open up her private life to an entire school but she wanted to do it, if it meant she could help other carers to gain strength from knowing they are not alone and to raise awareness of children with disabilities.

The feedback has been astounding and the headmaster is so impressed he wants her to talk to other older groups outside of school.

Lots of children now speak to her at school about their problems and are now following her on social media. Even some of the tough lads in her class were reduced to tears! We simply couldn’t be prouder!”

Eve is incredibly humble, not wanting any recognition for the effort she is putting in to educate and inform her classmates. She simply wants to let people know that it is ok to be different and if she can stop even one person from being bullied, Eve is happy.

To help put across her message and to let everyone know how proud she is of Cole every day, Eve put together a heart-warming video tribute to her brother which can be viewed below.

Cerebra was able to help Cole with a grant for speech and language therapy.