Summer Raffle 2016

Poppy and Rob draw the winning tickets

Poppy and Rob draw the winning tickets

On 29th July 2016 eleven year old Poppy Jones drew the winning tickets in our Summer Raffle.

Poppy, who has cerebral palsy and chronic lung disease, made the news last month for completing the Cardiff Triathlon with her dad, Rob. The pair completed the challenging course using equipment designed and made by the charity’s Innovation Centre.

The pair have since become Ambassadors for Cerebra and are delighted to be able to help raise awareness of the work the charity does.

Poppy said: “Cerebra is special to me because they help support children like me with brain related conditions. When I was younger I spent a lot of time in hospital. In the past 3 years I have been better and helped fundraise for charity. This year, I did my first triathlon for Cerebra – it was amazing! My type of cerebral palsy is rare so I like to tell people more about disabilities and me. Next I would like to do the London marathon so more people can hear about Cerebra”.

The event was also chance to celebrate Poppy’s incredible achievement at the triathlon where she really did achieve her dream of overcoming all the odds and proving that she can do anything, with a little help. The duo helped to raise an amazing £10,000 for the charity which will be used to support more children like Poppy.

We hold two raffle draws each year with the top prize winner receiving £5000, a second prize of £1500 and a third prize of £500. There are also ten £100 Love to Shop vouchers for the runners-up. The lucky winners from the summer draw have been notified.

If you’d like tickets for our Christmas draw please get in touch with louised@cerebra.org.uk.

Luke Clements: How I Became Involved in Research and What I Hope to Achieve

Luke Clements

Luke Clements

Professor Luke Clements is Cerebra Professor of Law and Social Justice at the School of Law, Leeds University. He explains how he became involved in research and what he hopes to achieve.

“I came to academic research relatively late in my career.  Initially I was a full time practising solicitor specialising in what is known as ‘public law’: claims against public bodies.

I realised however that winning cases did not necessary make public bodies change the way they behaved: quite often it made them more defensive.  Only a few people were able to take court cases as legal aid was often difficult to obtain. Even with support, challenging public bodies can be a dispiriting, exhausting and intimidating experience.

This realisation is why I became involved in research.  I was fortunate to get a post at Warwick University, then at Cardiff and I am now at Leeds.  For the last 20 years my research focus has concerned the law relating to the social care rights of disabled people and their carers.  During this period it has been accepted that social care law needed to be made more accessible.  This has recently resulted in reform legislation in England and Wales – for which I acted as the special adviser to the Westminster Parliament.

Streamlining the law is welcome but in itself insufficient to enable all disabled people and their carers to access their entitlements.  Public bodies face many competing demands and this can pose enormous problems for individuals with limited resources who are not familiar with the system.  What is needed are mechanisms that help families overcome these barriers.

Cerebra had also recognised this important need and in 2013 I was honoured to be awarded a Cerebra Research Chair to take this work forward.

The LEaP Project

Our programme, known as the ‘Legal Entitlements and Problem-Solving (LEaP) Project’ has two intertwined elements – both involving a high level of collaboration between the University and the Cerebra in-house research team.

Legal advice scheme

The first element is a practical legal advice scheme for families who are having difficulty accessing health, social care or other support services.  Requests are received and assessed by Cerebra staff and those cases which meet our eligibility criteria are referred to the Project Team for consideration.

In the second element of the LEaP Project we analyse the information generated by the legal advice scheme to help identify commonly occurring problems and practical mechanisms that can help families overcome these.  This research takes us in many directions.  One of these involves the use of ‘pro bono students’ to prepare reports on specific ‘commonly occurring’ themes and another concerns expert input from our Family Research Ambassadors.

Pro bono Student support

Universities have many excellent resources – not least their students.  With the cutbacks in legal aid and other advice agencies, many Law Schools are developing ‘law clinics’ that try to address these difficulties.  Cardiff Law School (where the research centre was formerly based) and Leeds have two exceptional pro bono law student programmes (pro bono is the fancy legal term for ‘free’!).

In the past few years our students have provided legal opinions on a wide variety of issues of central concern to families and these are published in the Digest of Opinions. This aspect of the programme is now focussing on systemic problems identified by the LEaP legal advice work (above).  Most recently this resulted in a report on the quality of ‘short breaks’ support in England and in the coming years we plan to research difficulties obtaining ‘Disabled Facilities Grants’, problems with school transport arrangements and the delay many families experience in obtaining a diagnosis when it is suspected their child may have autism or similar impairment.  This work feeds into our underpinning research (below) and also identifies areas where there is a need for an advice guide.

Family Research Ambassadors (FRA) Scheme

To understand ‘what works’ in relation to ‘problem solving’, families of disabled children are the best people to ask. Many have become experts in navigating the bureaucratic maze and scaling the administrative hurdles.  The FRA Scheme (first developed by our Cerebra Chair colleague Professor Richard Hastings at Warwick) brings together such experts by experience and with their help develops ‘problem solving’ tools (such as the ‘Toolkit‘).  The FRA members then disseminate the problem-solving expertise through regional training programmes, seminars, presentations etc.

We have just completed a very successful FRA scheme in the Bristol / South Wales region and with Cerebra we are seeking additional external funding to develop similar schemes in every region of the UK – so if you are able to help with this in any way – please let us know.

The underpinning research

Underpinning all these activities, the research at Leeds seeks to:

  • identify the key factors that build resilience – enabling families to continue until they have obtained the support they and their children need
  • identify the most effective mechanisms for resolving commonly occurring problems.

As part of his PhD research, my colleague Derek Tilley is undertaking empirical research on this question: pulling together the relevant data and experiences of the advice, pro bono and FRA programmes.

This is the most exciting, engaging and practical research with which I have been involved.  It is research that is having a direct effect – improving the lives of many families and also, through a constructive dialogue with the hard pressed public bodies, making significant changes to their practices”.

Sleep Walk Success!

Sleep Walk 2On Saturday 23rd July we held our first Cerebra Sleep Walk to the top of Pen-y-fan in the Brecon Beacons. The moonlit walk was held to raise awareness and funds for our Sleep Service.

Our intrepid walkers gathered at 7pm and, following a safety briefing from the mountain rescue team, grabbed a glow stick and set off on the climb to the summit. There was a real feeling of camaraderie with everyone supporting each other, giving encouragement and moral support when needed.

As night drew in at the summit Cerebra Ambassador and mum, Tor Goodman, gave a powerful speech about just why Cerebra’s Sleep Service is so vital. This was followed by a mountain top auction of prizes donated by local businesses – this may be a world record for the highest altitude auction ever held (awaiting confirmation by Guinness World Records!).

There was time for a great group photo lit by an illuminated SLEEP sign made by our Innovation Centre, before descending in the darkness with torches and glow-sticks to light the way.

We all know that sleep deprivation can make us feel like we’re climbing a mountain but can never reach the top. We understand that, for families with children with a brain condition, sleep deprivation is a part of life and a continuous mountain to climb. Our Sleep Service supports families to get a good night’s sleep.

Thanks to everyone who joined in the walk and who sponsored those who did – you support is very much appreciated.

The walk was such a success that we are planning another night-time adventure in the Yorkshire area and will be announcing next year’s Pen-y-Fan date soon.

Sleep Walk 3

Living with Hemiplegia and Epilepsy

PoppyWe are asking for young people to write about their experience of growing up with and living with a disability to help us challenge negative perceptions and promote a wider understanding of different conditions. In this article eleven year old Poppy tells us her story.

“My name is Poppy and I have left-sided Hemiplegia and Epilepsy.  For people who don’t know what I have I will explain. Left-sided Hemiplegia means that you have a weakness on one side. Sometimes my arm does strange things. I use my left hand for steadying.  I also pick up the dice with my left hand when Mum and I are playing games. But otherwise I have difficulty using my affected hand and arm. I wear a lycra arm and hand splint to help stop my arm and hand from going everywhere.

My left leg has a high tone and that makes walking difficult. My left leg is also shorter than the right so I have a heel raise on my shoe. I wear a splint otherwise I cannot walk.

Poppy's pictures 1I had some surgery a few years ago because I could not walk at all then, because my foot was at an odd angle. I use a manual wheelchair sometimes if I get tired. I will be using a powered wheelchair around my new secondary school because it’s really big.

Poppy's pictures 2The type of Epilepsy I have is Focal Seizures. They are boring because you have to sit and wait for them to go away. This is what I think I look like.

I have to take medication twice a day but I still have seizures. My seizures make me feel woozy and I can’t think very well at school. Sometimes seizures upset my sleep and am awake during the night for hours so I am tired the next day.  My tummy feels odd too when I am having seizures and I go off food. I feel unwell for days before and after my seizures.

I like playing tennis with my Mum, which is good physiotherapy. I also have an adapted trike which I try to ride every morning before school, if I am feeling well enough. I love swimming but I haven’t been able to go for a while because of my seizures. I haven’t been able to attend my drama or karate clubs either because of feeling unwell. My seizures mean I miss out on lots of things. They are really annoying.

I was two when I got left-sided Hemiplegia, luckily I can’t remember anything. I was very poorly, and I could have died.  That is what Mum says anyway. I had E-coli and had to stay in hospital for seven weeks.

poppy-gameI got my Epilepsy when I was eight, when puberty started. So Mum thinks that my Epilepsy was triggered by puberty (which I agree with). I hope that means I will grow out of it. I really want to drive when I am older but if I still have seizures I won’t be able to.

I changed primary schools recently because I was having problems with friendships. It had been going on for a while. It made me feel like I was invisible. Now I am at a new school and it is better. I have nice friends. But I am told I am behind a lot and I need to catch up which stresses me out. Mum had a talk with school about avoiding saying I am behind because anxiety can trigger my seizures.

Hemiplegia doesn’t just affect my body though, it also has hidden effects – I can have difficulty processing information and with remembering. When I have seizures it affects these two aspects even more. Mum says I repeat myself a lot and get confused.

I have lots of hospital appointments and see lots of doctors and professionals. It’s really annoying. When they talk about surgery it upsets me and I feel worried.

I get up at 6a.m. every morning because I have a lot to do. I do daily physiotherapy and Occupational Therapy before I go to school and I practice washing and getting dressed, which takes a long time. I get really tired.

When I grow up I’d like to be an author. I’d like to have a family and be happy.”

If your child would like to write something for us we’d love to hear from you. Please contact Emma Thomas on emmat@cerebra.org.uk.

News from the CIC

Find out about some of the new products the team at Cerebra Innovation Centre have been working on.

bouncerBounce

We have just completed 6 more Big Bouncers for jump happy kids. These bouncers work in the exact same way baby bouncers would, but are a bit bigger so bigger kids can use them to jump around.

They are made from 18mm Birch Plywood which makes them very strong, they come flat packed, but with just the fixing of a few bolts (instructions included) they are ready in minutes.

Please get in touch if you think this will help your little jumpers.

rocket-shelvesRocket shelves

These cool shelves were designed for a young boy and to help his mum who has to transport numerous medical machines whilst transferring him from room to room. They have been styled to suit a child’s bedroom and be more like a child’s toy rather than looking dull and medical! They feature 3 shelves, space to store an oxygen bottle, a 4 socket extension lead so all the machines are plugged in and you only need one wall socket, and 4 omnidirectional wheels so it can be moved around effortlessly. Additionally there is ample space to wind wires and store bits and bobs!

buggyRugged Buggy

This is the CIC pimped-Maclaren Major! A family asked for something to help with access on the beach but which could also fold up and fit in the car with other holiday stuff and luggage.

Using a Maclaren Major Elite as a basis we added stainless steel axles and pneumatic tyres with plastic bearings and 3D printed spacers. We hope this will enable this family to access the beaches of South Wales for their summer holiday and many more to come!

Find out more about the CIC on their pages and get in touch on cic@cerebra.org.uk if you think they can help you.

Poppy’s Dream Comes True

Go Poppy!On 24th June Poppy’s dream finally came true – she completed the Cardiff triathlon in style!

The weather conditions were perfect on the day, dry but not too hot. We met an excited Poppy and her mum and dad before the start. Poppy was really looking forward to the whole experience and couldn’t believe that the day had finally come. Her dad, Rob, was a little nervous but also looking forward to the challenge as he had a final run through with the CIC team.

Poppy’s mum, Rachel, explained that for all of her life Poppy has been on the sidelines of everything – able to watch but not take part – and always feeling left out. This has been so hard for Poppy and the whole family and this why the triathlon was such a huge thing for them all. For the first time she was able to join in and be in the thick of the activity.

Poppy takes to the water.

Poppy takes to the water.

The whole event went very smoothly and to plan. The equipment, designed by CIC, worked perfectly and looked amazing – getting lots of attention from everyone. There were no hitches at all and Poppy and Rob crossed the finishing line in a very respectable 1 hour and 4 seconds. They were both tired but absolutely thrilled.

The crowd was so supportive all day, cheering loudly for Poppy all the way round the route. The commentator was amazing, constantly giving Poppy and Cerebra a mention. The other athletes were also very impressed, giving her their congratulations and support. Poppy got lots of press attention, was photographed constantly and gave several media interviews – and she absolutely LOVED being the centre of attention.

Crossing the finish line

Crossing the finish line

The whole event was an emotional and positive experience for all concerned. Poppy proved her point about being able to do anything, with a little help, and Cerebra did what we do best – providing positive support to help a child overcome their challenges and have a positive experience.

Our thanks go to everyone who contributed to, supported and sponsored this project. Their dedication, commitment and belief made this huge achievement possible.

To date Rob and Poppy have raised more than £10,000 for the charity.

You can read the full details of the story here.

Why we need more fathers to take part in research

Rob and Poppy 2Mikeda Jess from The Cerebra Family Research Group at the University of Warwick explains why they need more fathers to take part in research.

“Research with families of children with disabilities contributes to a greater understanding of their experiences and the factors that have an impact upon their lives. Traditionally, when researchers make a call for families to take part in research it is often mothers that respond, completing surveys and answering questions about their child and family life.

Even in modern times, it is mothers who often assume the primary care-giving role and so they are well placed to speak on behalf of their family. Mothers are usually a fountain of knowledge regarding their child’s strengths, difficulties, and daily challenges and can talk about their family as a whole too. Mothers have made a major contribution to research and to our understanding of families of children with disabilities. Thank you!

Although sometimes they are, mothers are not usually the only members of a family living with a child with disability. There are often other children (siblings), another parent (perhaps a father), and extended family members (such as grandparents, step-parents, or aunts and uncles). In this article, our focus is on fathers.

Fathers often play a significant and distinct role in the lives of their children, but theirs is a significant voice often missing from family research. What this means is that we actually know very little about fathers’ perspectives and whether their experiences are similar to or different from those of mothers.

What do we know from research so far about fathers and mothers and whether they have similar or different experiences? Researchers that have included fathers have found (unsurprisingly) that they are different to mothers. For example, fathers tend to report fewer problems in relation to their psychological well-being than do mothers in families of children with disabilities. Fathers report less stress, depression and anxiety.

Why might fathers of children with disabilities report fewer psychological difficulties than mothers even within the same family? One answer is that across the whole population men/fathers tend to report fewer psychological difficulties than do women/mothers. Although this reminds us that families of children with disabilities are in many ways just like other families, it actually doesn’t explain why this difference is there.

There may be some additional clues in research with families of children with disabilities about why fathers report fewer psychological difficulties than mothers. For example, many mothers give up paid work to care for their child with disability whereas many fathers stay in work. Perhaps fathers have the advantage of more social contact with work colleagues and the benefit of a role outside of the home that gives them an additional sense of worth? In addition, mothers typically (though not always) perform most of the care-giving tasks for their child with disability. Thus, the strain of this work and perhaps the difficulties of dealing with (for example) any significant child behaviour problems, probably falls more onto mothers than fathers.

In the research of the Cerebra Family Research Group at the University of Warwick, we have also looked at families from a systems perspective. This means that we are interested in how the different members of a family affect each other. From this perspective, it is not just the child with disability that might have an impact on other family members, but family members may affect the well-being of the child with disability and impact on each other too. For example, in some research studies of families of children with autism we have found that fathers’ psychological well-being was more closely associated with the mother’s depression than it was with their child with autism’s behaviour problems. In contrast, mothers’ well-being was associated with both the father’s depression and their child’s behaviour problems. Again, this shows that fathers’ experiences can be quite different to those of mothers in families of children with disabilities.

Differences between mothers and fathers are evident, but our knowledge on why exactly that is remains limited. It is clearly very important that fathers get more involved in research. First, the voice of fathers is valid but often missing. Fathers offer an insight into their family life that is equal, but different, to other members of their family. Second, as researchers we are just as interested in the well-being and experiences of fathers as we are in the well-being and experiences of mothers. We want to know how best to support the men too!

Recently, we have launched the Cerebra 1,000 Families Study. We want to hear about the experiences of families raising a child with learning (intellectual) disabilities including children who also have autism. For the reasons outlined in this article, we are very keen to hear from two adults from the same family, ideally a mother and a father. People having an additional parental caregiving role in families (apart from the mother that is) are not always fathers and so grandparents, step-parents and adult are also welcome to participate in our study. Our aim is to collect information from 1,000 families. So far we’ve had a great response so a big thank you to all who have taken part.

We need to hear from fathers too and from more families! If you have already taken part and you have a partner or any other family member who helps you take care of your child please do encourage them to take part in the study. You can find the survey online or alternatively request a paper copy. Follow us on Twitter and become our friend on Facebook.

Get involved in making this the largest UK study ever of families raising a child with a learning disability so that there is a better understanding of families like yours.”

Find out more about the project here

Disabled Facilities Grant – Arthur’s Story

disabled facilities grant

Public bodies in the UK have certain duties to provide health, social care and other services for disabled children. Sometimes, however, families can experience difficulties in accessing these support services. Our LEaP Project team aims to provide free legal advice to families who need help getting the right support for their children.

The project publishes an annual round-up of some of the cases the project has helped with, called a Digest of Opinions. One of those cases is that of Arthur whose parents asked for help concerning a disabled facilities grant.

Arthur is 3 and has Autism, Global Development Delay (GDD) and a range of associated, complex medical conditions. Arthur has undergone various medical assessments at a children’s hospital and the clinicians have stressed the need for adaptations to Arthur’s home; in particular to his bedroom. Arthur’s parents requested an assessment from the local authority to enable the adaptations to be undertaken. The local authority advised that there is a standard delay of six months before assessments can be undertaken and an even lengthier delay in completing any works.

The legal opinion provided by the Project explains that the local authority is under a duty to assess within a reasonable time and to provide disabled facilities and adaptations (if they are necessary) within a reasonable period. Interim support should be provided, pending the assessment and provision of facilities and/or adaptations.

The full case Report can be found on page 4 of the Digest of Opinions. All the young people’s names have been changed. The opinions are a statement of the law and policy at that time – it should be remembered that the law does change.

LEaP is an innovative problem-solving project that helps families of children with brain conditions cope with the legal barriers they face. We listen to families and help them get the knowledge they need to access health, social care and other support services. We identify the common legal problems that prevent families getting access to services and we develop innovative ways of solving those problems. We aim to reach as many families as we can by sharing our solutions as widely as possible.

Read the Project Guidelines to find out more about the type of legal problems we can help with. If you would like to ask for support from the project please fill in the Online Request Form. If you would like further information, please contact us at probono@cerebra.org.uk or on 01267 242582.

New look for Cerebra’s Legal Advice Project

ToolkitWe are launching a new look for our Legal Advice Project which provides practical solutions to the legal problems families face.

Our Legal Entitlements Research Project has been going from strength to strength since it started in October 2013 and we’ve learned a lot about the problems parents face in getting access to services for their children.

The past few months have been a particularly eventful time for the project. Professor Luke Clements, who runs the scheme, recently moved from Cardiff University to a new post as Professor of Law and Social Justice at the University of Leeds. We’re delighted that the project will continue under Professor Clements’ direction at Leeds, which has a pioneering Centre for Disability Studies (CDS), bringing together scholars from a range of academic disciplines across the University. You can read more about the University’s ground-breaking work in a Disability News Service article. We’re grateful to colleagues at Cardiff University for all their hard work and commitment in establishing the project and we look forward to having other opportunities to work together again in future.

We’ve also welcomed a new Research Assistant to the team at Leeds, Sorcha McCormack, who will be working with Professor Clements to develop the project.

In light of these developments, we feel that this is the perfect time to relaunch the project with a new name – the Legal Entitlements and Problem-Solving (LEaP) Project. We’re committed to providing practical solutions to the legal problems families face and we wanted our new name to reflect our problem-solving approach. The project is all about making research relevant to families in their everyday lives.

We’ve also launched a new look website, with links to our Problem-Solving Toolkit, template letters, parent guides and other resources. We aim to add more resources to the site as the project develops. Our goal is to help parents get the legal information they need to address problems in getting access to services.

If you want to learn more about the scheme, have a look at our updated Project Guidelines. If you’d like to ask for help, please fill in our online form.

We’re always looking for new ways of sharing legal information with with families – if you have any suggestions, please contact us at probono@cerebra.org.uk.

Small change makes a big difference

Naz and his team

Naz and his team

We’d like to say a huge thank you to Mr Nazakat Mohammad on behalf of the families we support.

Mr Mohammad owns the Victoria Fish and Chip Bar in Whitchurch, Cardiff and has had one of our collection boxes since 2010. To date he has raised an incredible £1276 for Cerebra.

He encourages his customers to put their spare change in the collection box and also asks them to donate the compulsory 5p carrier bag charge. The spare change really adds up.

Mr Mohammad explained to us that life was difficult for him and his family when he was growing up and this means that he does as much as he can to support children today.  He helps the young children when he travels back to his home village, as there is no source of support available for them, and he is glad to be able to help a children’s charity like Cerebra.

If you know a business who would like to host one of our collection boxes please get in touch with melaniec@cerebra.org.uk or call us on 01267 244216.