School Transport – Dylan’s Story

School transport help

Public bodies in the UK have certain duties to provide health, social care and education support for disabled children. The Legal Entitlements Research Project is open to parents and carers of children aged 16 or under who have a neurodisability and who need help with a legal problem regarding access to health, social care or (to a more limited extent) education support services.

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 11 year old Dylan.

Dylan has severe learning difficulties, attention deficit disorder and autistic behaviours. He has a Statement of Special Educational Needs which identifies his challenging behaviour and entitles him to school transport and an escort.

Dylan’s parents were concerned that his escort was unaware of his needs and didn’t have the necessary skills to manage his behaviour. Dylan had not been introduced to his escort before his first trip to school that term. He became stressed and anxious when travelling to and from school and, on occasion, behaved violently, harming himself, the transport vehicle and other children.

The legal opinion given by the LERP details the legal duties of the authority to make sure that children are transported safely and with the minimum of stress. Drivers and escorts should be properly trained to cope with a child’s specific disability related needs and behaviour.

The full case Report can be found on page 40 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.

The Legal Entitlements Research Project is open to parents and carers of children aged 16 or under who have a neurodisability and who need help with a legal problem regarding access to health, social care or (to a more limited extent) education support services.

Read the Project Guidelines to find out more about the type of legal problems we can help with.

Autobiographical Books in our Library

autobiographical books blog header

We have many books in the library written by the parents of children with neurological conditions and written by people themselves about their own experiences growing up.  If you would like to borrow any of them please email the Librarian on janetp@cerebra.org.uk or if you would like to join the library, there is a membership form on the library page of our website.

Books by parents who have children with:

Brain injury from birth

  • L6128 & L6211 Blue Sky July by Nia Wyn
  • L6663 The Skies I’m Under: the rain and shine of parenting a child with complex disabilities by Rachel Wright

Acquired Brain Injury

  • L6358 Unthinkable: a mother’s tragedy, terror and triumph through a child’s traumatic brain injury

Autism

  • L6037 Ollie: the true story of a courageous life by Stephen Venables
  • L6077 The Siege: a family’s journey into the world of an autistic child by Clara Claibourne
  • L6178 A Will of His Own: reflections on parenting a child with autism by Kelly Harland
  • L6256 Growing Up Severely Autistic: they call me Gabriel by Kate Rankin
  • L6307 Not Stupid: the inspiring true story of one mother’s fight to give her autistic children the quality of life they deserve by Anna Kennedy
  • L6496 Carly’s Voice: breaking through autism by Arthur Fleishmann
  • L6514 George and Sam: the story of two brothers with autism by Charlotte Moore
  • L6580 Coming Through the Fog: a mother shares her journey of her daughters recovery from autism and sensory processing disorder to functioning recovery and independent living while providing helpful tips for other parents by Tami Goldstein
  • L6624 A Real Boy: how autism shattered our lives and made a family from the pieces by Christopher and Nicola Stevens
  • L6651 Toast: autism in the early years by Alice Boardman
  • L6149 A Friend Like Henry: the remarkable true story of an autistic boy and the dog that unlocked his world by Nuala Gardner
  • L6545 The Horse Boy: the true story of a father’s miraculous journey to heal his son by Rupert Isaacson

Aspergers

  • L6309 Eating an Artichoke: a mother’s perspective on Aspergers Syndrome by Echo Fling
  • L6480 The Spark: a mother’s story of nurturing genius by Kristine Barnett
  • L6623 Natural Genius: the gifts of Asperger’s Syndrome by Susan Rubinya

ADHD

  • L6020 Marching to a Different Tune: diary about an ADHD boy by Jacky Fletcher
  • L6306 ADHD: a challenging journey by Anna Richards
  • L6507 The Boy From Hell: life with a child with ADHD by Alison Thompson
  • L6548 Multicoloured Mayhem: parenting the many shades of adolescents and children with autism, Asperger Syndrome and ADHD by Jacqui Jackson

Cerebral Palsy

  • L6280 My Perfect Son Has Cerebral Palsy by Marie Kennedy

Down Syndrome

  • L1299 & L6202 Expecting Adam: a true story of birth transformation and unconditional love by Martha Beck
  • L1307 Blessing by M Craig
  • L6129 Gifts: mothers reflect on how children with Down Syndrome enrich their lives by Kathryn Lynard Soper
  • L6201 Danny’s Challenge: the true story of a father learning to love his son by Danny Mardell

Learning Difficulties

  • L0767 Something’s Not Right: one family’s struggle with learning difficulties by N Lelewer
  • L6169 Miles From the Sideline: a mother’s journey with her special needs daughter by Maura Weis
  • L6198 When the Bough Breaks: a mother’s story by Julia Hollander
  • L6317 Laughing Allegra: the inspiring story of a mother’s struggle and triumph raising a daughter with learning disabilities
  • L6344 & L6555 Different Dads: father’s stories of parenting disabled children by Jill Harrison

Books by people who grew up with a condition

  • L6434 The Woman Who changed Her Brain: unlocking the extraordinary potential of the human mind by Barbara Arrowsmith-Young
  • L6214 Succeeding with Autism: hear my voice by Judith Cohen
  • L6419 & L6506 From Another Planet: autism from within by Dominique DuMortier
  • L6495 & L6620 The Reason I Jump: one boy’s voice from the silence of autism by Naoki Higashida
  • L6291 Freaks Geeks and Asperger Syndrome: a user guide to adolescence by Luke Jackson
  • L6135 ADHD: an autobiography of survival by Richard Kuendig
  • L6248 Only a Mother Could Love Him: how I lived and triumphed over ADHD
  • L1278 My Left Foot by Christie Brown (Cerebral Palsy)
  • L1346 Under the Eye of the Clock: the life story of Christopher by Christopher Nolan (Cerebral Palsy)
  • L6335 Where There’s a Will There’s a Way: Marilyn gives us a unique insight into what it is like living with Cerebral Palsy by Marilyn Earley
  • L6361 26 A Behind the Scenes Tour of Life with Cerebral Palsy by Stuart Maloney
  • L6643 If Only You Knew: a young girl growing up with Cerebral Palsy in the real world by Jacy Arthur
  • L1513 I Survived: how to get a life by P Churchill (Epilepsy)
  • AV6318 John’s Not Mad: the ground breaking QED documentary on the life of John Davidson and his struggle with Tourette’s Syndrome (dvd)
  • L6557 Passing for Normal: the memoir of a young girl’s struggle with Tourette’s Syndrome by Amy Wilensky

Books by people who have experienced a brain injury

  • L6466 The Day My Brain Exploded: a true story by Ashok Rajamani

Email janetp@cerebra.org.uk to borrow any of these books or go to our library page to view the rest of our books.

Group of Runners get Ready for the Cardiff World Half Marathon

Neil, Emyr and Aimee with Sir E. Bear

Neil, Emyr and Aimee with Sir E. Bear

A group of runners from Carmarthen are getting ready to take part in the prestigious Cardiff World Half Marathon on Saturday 26th March.

The event is special because it is the first time the IAAF World Half Marathon Championships have been held in the UK since 2009 – when Birmingham hosted the event. The fact that the race is once again coming to the UK is huge because it means that some of the world’s top athletes will be on our doorstep. It also means that budding runners can test their skills against the likes of Mo Farrah.

Cerebra are very proud to have a group of seven runners taking part in the event in order to raise money for the charity.

Neil Lightfoot, Jorge Collings, Ben Horne, Emyr Evans, Jacob Booth, Aimee Booth and Nick Bates will all be dusting off their running shoes and hoping to make it around the 13 mile course – all while raising money for Cerebra.

Ben said: “When I heard that Cerebra needed representation for the Cardiff half Marathon in March, I felt some personal responsibility to answer the call. I’m not a dedicated runner, but I’m ready, willing and able, and I’m already preparing for this race. I’m going to run simply to represent Cerebra and support their work.”

If you would like to sponsor one of our runners, you can do so by clicking on one of their names above or you can donate on our website or by texting CERE12 and the amount you want to donate to 70070.

Mr Nigel Simpson: My Journey into Research

Nigel Simpson

Nigel Simpson

For most mothers pregnancy is a safe and straightforward process but for 1 in 5 unexpected complications can occur and are a major cause of childhood disability. Our research team at the University of Leeds, headed by Mr Nigel Simpson, focuses on understanding the causes of these complications and aims to predict and stop them from happening.

In this article Mr Simpson explains his journey into research.

“Maternity is a fast-paced, exciting, highly rewarding place to work in. When I started as a junior doctor I quickly recognised that once labour started safe delivery of the baby was my priority, but many other issues appeared beyond my control. These arose in three areas: when delivery came too soon (preterm or premature birth), when the size of the baby was less than expected (low birthweight), and when the mother had life-threatening high blood pressure (also known as pre-eclampsia). In all, 1 in 5 first-time mums encountered one of these three problems. The factors causing these complications were poorly understood and usually appeared unchangeable, with no therapies available to prevent them happening.

When I subsequently worked for six months within a neonatal unit I then saw the short and long term consequences for these babies and their families, in particular the likelihood of brain injury. It struck me at that time that our responsibilities for the mother and baby in pregnancy needed to extend to the prediction and prevention of these adverse outcomes rather than to simply react to their happening.

During my training I applied for a research post in Canada and spent two years investigating the monitoring of babies’ well-being in pregnancy (ie how we could make sure they were well before and during labour, and when we should prepare for a planned birth) and also the development of the placenta (afterbirth) in early pregnancy, and recognised that events occurring early on in pregnancy would be an important predictor of well-being later.

When I returned to the UK I then began to focus on the prediction and prevention of these complications. At the centre of my work were the links between research, teaching, and clinical practice, and the importance of each informing the other. In the research field, automated analytic technology, the sequencing of the human genome, and improved computational power offered major opportunities for progress but required collaboration with funders and the participation of expectant mums in order to acquire the large numbers of samples required to prove that the potential breakthroughs from smaller, laboratory-based projects were applicable in the clinical situation.

Cerebra’s sponsorship ensured that we were able to contribute to the world’s largest pregnancy biobank (SCOPE), in which seven maternity centres asked first time mums in early pregnancy if they were willing to give a small blood sample along with lifestyle information, and then for researchers to collect information about how the pregnancy had progressed. We successfully followed over 5500 mums in this way. The samples collected have given an invaluable insight into the factors that can predict pregnancy complications. The paper which we then published in 2014 was selected as the top clinical science paper that year by the journal Hypertension. This work, together with further national clinical studies we were involved in studying mums later in pregnancy, led to the identification of a biomarker called placental growth factor (PlGF) as being highly predictive for early delivery of the baby in at-risk mums. Its use in routine clinical practice is currently being evaluated by NICE, and should make sure that doctors and midwives are more able to accurately identify mums needing additional support whilst at the same time reassuring others who are not actually at additional risk. We have also just completed a five-year global study investigating the genetic basis for pre-eclampsia, and it is again likely that these findings will form the basis of future predictive tests and enlarge our understanding of factors causing conditions like pre-eclampsia.

Throughout these long-term studies, in the laboratory we have also been investigating the mechanisms causing these complications. In conjunction with researchers from Harvard we have been able to begin to unpick the inflammatory pathways causing preterm birth using new methods of analysing large and complex datasets – a new field called bioinformatics or systems biology. This will give a better understanding of further predictive tests as well as the best approaches to prevent preterm birth.

One of our PhD students is studying the make up of the cervix (neck of the womb) and how this alters in mums more likely to deliver early. This work fits in nicely with a national study we are part of which is trying to determine which type of suture material we should use to reinforce the cervix to prevent it happening in these mums (C-STICH). These studies were highlighted in a recent NIHR online course which explained the importance of clinical research studies. One of our other PhD students, using unique digital imaging techniques pioneered here in Leeds, has been understanding the mechanisms causing the placenta to fail in pregnancy and lead to later problems like low birthweight babies.

In addition to these large international studies we have continued to look carefully at our local mums to understand how lifestyle can affect pregnancy outcome. Unsurprisingly, it is clear that a balanced diet, together with healthy lifestyle and regular midwife visits are very important for healthy outcomes – although not totally protective for all complications.

All of this knowledge and experience helps us deliver more effective care for the mums coming through our maternity unit. Leeds was one of the first hospitals in the country to set up a preterm birth prevention clinic, which now looks after over 300 at-risk mums each year. Our rate of preterm birth has fallen in Leeds (in distinction to national and international trends), and we have been encouraging the development of other clinics in different UK cities through a national network, offering training, research, and practical advice to clinicians and midwives.

Working in partnership with Cerebra has helped us achieve these goals, and we trust, will help us achieve more in the years to come”.

Mr Nigel Simpson is a Consultant Obstetrician and Gynaecologist at the Leeds Teaching Hospital NHS Trust and Associate Professor at the University of Leeds. He is also a National Lead for the NIHR Clinical Research Network
for Reproductive Health & Childbirth.

You can find out more about the work of our Leeds research team here.

 

Today my daughter thinks I’m mean

One of our Ambassadors has kindly agreed to let us share her latest blog post on family life with two girls, aged 7 and 9, who both have dystonia and are being treated for mitochondrial disease:

“Today has been a toughy. Today my daughter thinks I’m a mean mum.

Now if this was from my lovely but quirky one I probably wouldn’t feel quite so bad, frequently I’m told I’m horrible & she doesn’t like me (usually after I’ve not twigged that today the sauce isn’t supposed to be mixed with the pasta even though yesterday it was!) Today it was from my more stable and concrete child. To be honest I don’t blame her.

Both girls have dystonia this affects them in different ways, but for A this causes her to have a tight calf, stiff ankle and variable tone in other parts of her body. She looks relatively fab most of the time, but to the trained eye her hopping, skipping gait, her rather slumped sitting posture & her writhing movements tell a different tale.

A has always been relatively OK about the things she has to deal with, she has done a few show and tells at school about new wheel chairs and even spoken to her class about what dystonia is.  Being in mainstream despite her challenges and part time hours has suited her well once we succeeded in getting her a full time one to one.

I am immensely proud of A’s gutsy nature, she embraces life and enjoys as many aspects as she can. Quite different than I was her age. Sometimes,though, the gutsy nature and being in mainstream can create tricky situations though.  A wants to be doing what her friends are doing, but when they play games running off in the field, actually then A can be left behind not able to keep up. Sometimes the boys in her class aren’t always very sympathetic when she doesn’t keep up in the queue. We’ve tried to help A develop her own strategies to deal with this, humour or witty comments back have often been the most successful. It’s about building up her resilience as sadly in the wider world this is probably the experience she will have to deal with.

My little Miss Determined came off some medicines for her dystonia last year as her neurologist thought they could have been causing her memory issues. Initially it didn’t seem to make too much of a difference other than a tremor when tired. But gradually we have noticed that she is stiffening up. Climbing and walking are becoming trickier for her and recently she has been complaining of pain in her ankle. We are awaiting splints and botox to try and help with this but in the meantime she has to deal with the discomfort.

Unfortunately wanting to be like everyone else has caused a bit of an issue this past few days. She is obviously in discomfort but when there was the opportunity to go to the local secondary she chose to walk. Whilst A can run and hop and skip around the playground relatively effectively the slower and more repetitive action of walking triggers spasms in her ankle and feet….cue wakeful night.

Today she was due to go to gymnastics. Having discussed this with a physio friend we came to the conclusion that perhaps avoiding jumping would be good. Unfortunately gymnastics involves a lot of jumping and the thought of not being able to do the class in its entirety lead to some seriously loud door slams! Watching her tears flow was enough to break my heart. I’m not sure which is worse seeing her in pain or emotional distress.  As she is nearing double figures I decided to put the ball in her court and let her decide for herself what she would do…..so to the class she went!

We have already got into the habit of arriving fashionably late as that means the girls miss out on the high energy warm up, but they then get to enjoy the important bits. Like most mainstream activities the other parents drop the kids and take the opportunity to have a quiet latte or do a quick Tesco shop while they have the opportunity. For me though, I’m the lone parent watching just in case there is any sign of a seizure or a flare up of their asthma. I’m not actually allowed to look like I’m watching as that would just be embarrassing apparently! So I stand there trying to pretend not to notice that A is limping.  Again to the untrained eye her smiles at the end of each activity covered the fact that she was in pain…but you can’t trick a mummy. Stood there alone my tears started to flow. I was rescued eventually by friends who gave me a grace period so the girls didn’t see my sadness. I borrowed a bit of A’s gutsiness to get me through the bedtime routine, but already we are paying the price for the fun and an extra dose of painkillers has been needed. What would I do next time? Probably the same because I think watching your child in emotional pain is perhaps harder than the physical”.

You can read more at Another Piece of the Jigsaw.

Can you help?

Winnie MainHere at Cerebra we’re always looking to recruit budding fundraisers to help us fund our vital services.

We receive no Government funding – relying entirely on the generosity of members of the public to come up with ever changing new and exciting ways to raise money.

With your help, we have already made a difference to the lives of children like Tom, who without his Cerebra grant, would not have been able to do something that other children take for granted – ride a bike.

As well as funding grants for specialist equipment, Cerebra has also provided practical support to families such as Caroline and Dylan’s. With your support, our Sleep Service was able to give advice that finally allowed the whole family to get a decent night’s sleep.

We have been blown away by the amount of support we have received over the years and love the new and creative ways you guys come up with in order to raise those vital funds.

Leon in the shark pool

Swimming with sharks

Thirteen year-old Leon Crawley didn’t want to do a run – he went one step further and swam with sharks!

Grandmother Winnie Forsdike, who had just celebrated her 72nd birthday, took a dip in the freezing cold North Sea on New Year’s Day – raising an impressive £1,400.

The only limit is your imagination so whether you want to challenge yourself with a run or do something a little out there, we want to hear from you!

You could put on a bake sale, shave your head or put on a quiz evening – anything that will get your friends and family involved!

For all the support you need to help us, contact Jessica Thomas on 01267 244222 or jessicat@cerebra.org.uk.

Download our fundraising A – Z below for more ideas.

Fundraising A - Z

Calling all Carmarthen Quizzers – Round 2!

QuizzerCerebra are preparing to hold our second quiz evening following the huge success of last year’s event.

We are once again asking the people of Carmarthenshire “are you Carmarthen’s smartest?” with rounds of questions covering favourites such as music, sport and current affairs.

The quiz will take place at Carmarthen Town AFC’s Clubhouse, Richmond Park on Thursday 9th June 2016. Teams will be pitted against each other to win the title of “Carmarthen’s Smartest”, as well as a cash prize of £300 – oh, and the chance to win our coveted trophy!

There will be eight rounds in total covering a range of subjects, as well as a few other fun rounds, so there will be something to suit everyone no matter what your specialist subject is!

We invite teams with up to a maximum of five members to take part but if there are more than five of you, don’t worry. We have plenty of spaces so you can just play against each other!

As well as the main event, there will also be a raffle and auction with some fabulous prizes on offer.

The entry fee is just £50 per team and this includes a lovely pie and mash supper from Hughes the Butcher, St Clears. There is also a fully licensed bar on site, should you need some encouragement!

All proceeds from the evening will come directly to Cerebra so get involved to help raise money to support children with brain conditions.

Booking is essential so to get your team involved please get in touch on 01267 244222, email jessicat@cerebra.org.uk or fill out the form on our “What’s On” page.

Poppy’s Dream

Poppy and Rob ahead of their Triathlon challenge

Poppy and Rob

On 26th June 2016 Poppy Jones and her dad Rob will take part in the Cardiff Triathlon together to raise money for Cerebra. But they will face an additional challenge – ten year old Poppy has cerebral palsy and Rob will be pushing/pulling her around the course using custom made equipment specially designed by our Innovation Centre.

Ten year old Poppy was born with quadriplegic cerebral palsy and chronic lung disease. She can’t sit, stand, roll or support herself and life is a daily challenge for her. She has suffered many health problems over the years and there have been times when doctors didn’t think she would pull through. Dad Rob explains “there have been times when it has been very touch and go and we feel very lucky that she has been with us for the last 10 years”.

But having a life-limiting condition doesn’t stop Poppy having fun. Poppy is a determined character with a great sense of humour. Her sense of adventure knows no bounds. She is a real thrill seeker and adrenaline junkie and has a true competitive spirit.

Rob, meanwhile is facing a challenge of his own in getting fit for the event. He’s never taken part in a triathlon before and isn’t a regular swimmer, runner or cyclist. At Christmas he could only manage two lengths of the local swimming pool and is using his ancient bicycle to train.

Rob running on a treadmill preparing for his Triathlon challenge

Rob is put through his paces

The University of Wales Trinity St David, who are project partners in CIC, are also fully supporting Rob and Poppy’s challenge. The University’s renowned health and sports specialists Dr Peter Herbert and Nalda Wainwright, who coach elite athletes in their high performance laboratory, will be giving advice to Rob and Poppy on their training programme.

Mum Rachel, along with the rest of the family and friends, are right behind Poppy and Rob and are fully supporting them all the way, providing all the back-up and help they need. Rob’s motivation for doing this is simply to help his daughter: “taking part in this triathlon is so exciting for her and psychologically it will really benefit her. She gets so frustrated at the limits her condition puts on her and this will really focus her mind on what she can do. Poppy doesn’t think ‘I can’t’ but rather ‘with a little help I can’. I’ve got my work cut out though as Poppy doesn’t want to just take part – she wants to win!”

The project is also a huge challenge for Cerebra’s Innovation Centre who are designing and making the equipment that Rob and Poppy will need to take them to the finish line. Having seen one of CIC’s recent projects (the surfboard), Rob realised what it was possible to achieve with a little help and decided to set the charity the challenge of designing, engineering and manufacturing three unique sporting products.

Innovation Centre's design for Poppy's boat

Latest design for Poppy’s triathlon boat

In principle the plan sounded quite easy for the design team – Poppy and Rob need a chair on wheels and a boat. But Poppy wants to win! So they need a chair on wheels with suspension, every ergonomic issue addressed and resolved, it must roll well and true and must be comfortable for both users. It must be light, stiff yet comfortable. The “boat” will be a unique design, sleek, slender and with the least hydrodynamic resistance possible, yet it must also be stable, strong – and unsinkable! Engineering will be one of the biggest challenges, but the team have lots of friends who have already offered lots of help. They will be collaborating with V-Track seating systems, Loop Wheels, J.D.Marine for welding, and have been offered significant design advice by naval architect Richard Pemberton from Falmouth. Oh – and as Poppy’s favourite colour is yellow, that’s what it’s going to be!

Dr Ross Head, Product Design Manager at CIC, explains “It’s wonderful to have the opportunity to be a part of this challenge. It is incredibly humbling to be around someone like Poppy- she is bright, bubbly, smiles all the time, she doesn’t complain about her situation, she just gets on and makes the best of every situation. When we met with Rob he was very emotional at the level of support and enthusiasm we showed towards them. But it is the same for us, to be able to help them achieve this impressive task really will be a moment to remember”.

Rob at the starting point of the triathlon in Cardiff Bay

Rob meets Amy Jenner from Wales Triathlon, the CIC team and Cerebra Events Co-ordinator Cecilia Bufton in Cardiff Bay

Welsh Triathlon and organisers of the Cardiff event, Always Aim High, are fully supportive of Poppy and Rob’s challenge. Amy Jenner from Wales Triathlon said “’Welsh Triathlon are committed to making sure everyone can achieve their Triathlon challenge. This is a dual challenge – both Rob’s amazing physical challenge and Poppy’s determination to experience life at its full. The Cerebra team designing the special equipment, the race organisers Always Aim High, and the support crew, have worked wonderfully together to make Poppy and Rob’s dreams come alive as well as raise money for charity Cerebra and other brain injured children”.

 

We’ll keep you updated on Rob and Poppy’s progress over the next few months.

You can watch a great video about Rob and Poppy on our YouTube channel.

If you would like to support Rob and Poppy please visit www.justgiving.com/Rob-Jones42

Problem-Solving Toolkit for Families

ToolkitCerebra has published a new Problem-Solving Toolkit to support disabled people and carers who are encountering difficulties with the statutory agencies in relation to the provision of health, social care and education support services.

Research conducted by the charity and Cardiff Law School in October 2015 revealed that families of disabled children are experiencing substantial delays in getting an NHS diagnosis and too few parents are being given written information when they do receive their diagnosis. Support services are not always offered and, when they are, they often do not meet the needs of the family. Moreover parents are reluctant to complain about any of this and, if they do, their concerns are often not dealt with adequately.

Whilst UK law provides powerful rights to such support services, this alone can be insufficient. Professor Luke Clements, Cerebra Professor of Law and Social Justice, Leeds Law School and author of the Toolkit explains: “The law can be complicated and difficult to understand. Even when you know what your rights are, it can be daunting, exhausting and sometimes intimidating to challenge public officials. There is a power imbalance and much research suggests (and indeed the Government accepts) that many families are fearful that complaining may make things worse”.

The Toolkit is a comprehensive, practical and easy to use guide to help families resolve difficulties with their statutory health, social care and education support services. It aims to help unpick commonly experienced problems and to offer effective strategies for resolving them. The Toolkit:

• considers nine general categories of dispute, from inter-agency disputes and complex cases to delays and resource issues, and offers detailed advice for resolving them
• identifies key factors that can empower people to claim their rights and to challenge failures when they occur
• offers advice on preparing for, attending and following up on meetings
• sets out a series of template letters that families can use in a variety of situations

It also provides a Jargon Buster, an explanation of what public authorities must do and explores a number of commonly held myths.

To accompany the Toolkit a central website, www.difficultbox.com, is being developed with links to law, practice and self-help guides that have been produced by many charities and support organisations. The facility to post comments and suggestions on the site is being developed.

The Problem-Solving Toolkit is free to download here.

The publication of the Toolkit has been made possible by a 2015 Economic and Social Research Council (ESRC) ‘Impact’ award in addition to financial support from Cerebra.

Mum to Run London Marathon for Cerebra

Juliette

Juliette

Due to unforeseen circumstances, Juliette has been forced to pull out of this year’s London Marathon. Thank you for your support.

Mum of three, Juliette Edwards from Birmingham, has a very personal reason for running in this year’s London Marathon for Cerebra.

Juliette, a doctor, has three boys – Benjamin, Daniel and Joseph who are all on the Autistic Spectrum and she has reached out for support from Cerebra on several occasions.

Juliette told us her story in her own words, including why she wanted to give something back to Cerebra.

“My three boys all have learning difficulties and Cerebra has helped me a great deal over the years. At times I don’t think I would have managed without Cerebra’s support.

Our family journey started when Daniel was born prematurely at 35 weeks. He rapidly lost weight becoming just 4 1/2lbs. I hadn’t for one moment contemplated that anything untoward would happen in my pregnancy. The day before he was born I had a little bleeding but still went to work, as I had a check up appointment later that day with the midwife, so thought I’d just discuss it with her then. My consultant and I had a paediatric theatre list that morning, and our conversation whilst at work included her asking me how it was all going with the pregnancy. I casually remarked that I was sure there was nothing to be concerned about, but that I’d had some bleeding. She felt differently and sent me straight off to the maternity unit. Needless to say I didn’t go back to work, and was declared to be in labour that evening with Dan being born the next day. I had a humongous cannula in my hand, just in case I were to suddenly crash. I found the whole experience surreal, with all the monitors attached and staff busying about, as I’d never had anything ‘wrong’ with me before.

Dan Jo and Benji

Dan Jo and Benji

It carried on from there. Daniel was rushed down to the special care baby unit on day four as he couldn’t feed until the twenty sixth attempt. As a result he was tube fed for fourteen days. We went home at day eighteen with a tiny fragile baby. We were back in the hospital when Dan was six weeks of age for surgery as he suddenly developed bilateral inguinal hernia. He was four hours in recovery as his temperature had dropped to 32 degrees on the operating table! He was delayed with all his milestones – smiling, rolling, laughing, sitting but I hoped for the best and thought he’ll catch up, it’s just because he was early.

The health visitor was so concerned that at eight months we were referred, and so began a whole series of assessments and investigations, and three weekly visits to the child development centre for a whole term for OT and SALT review, culminating in a big multidisciplinary meeting, at which dyspraxia was diagnosed. It was said he likely had ADD and ASD too, but he was too young for these to be formally diagnosed as yet. I was told he would definitely need special schooling, and that the consultant was going to get the ball rolling for this, even though he was only 2, as such things took time to arrange. We carried on through toddlerhood with OT and physio interventions, as well as all the usual activities, I had gone back to ophthalmology when Dan was one, and started maternity leave again when Dan was 2 and a half, as Jo was born. How wonderful when he could just feed minutes after being born, and he appeared to be developing at a normal rate. How surprised I was when the health visitor expressed concerns when Jo was two and said he needed to be referred for consideration of ASD. Dan started school, and after a huge amount of toing and froing with the LEA, no statement was forthcoming for Dan, and he started at a mainstream school with 90 peers in his year, 30 in each class. Educationally, everything was a phenomenal struggle for him.

I was pregnant with Benji, and he threatened to be born at 32 weeks but he managed to hold on in there until 37 weeks. Benji’s development was delayed also from the outset, and he also had a fistula requiring surgery when just a few months old and also abdominal surgery for duodenal malrotation before the age of two. Alongside all the therapy input, and SEN meetings at school I was often going to appointments every day of the week.

I could write a book about all the things that happened, interventions I tried, support I gave. Then the tribunal battle to get Dan his statement and a place in special school, that would be a whole volume in itself. Benji’s school weren’t coping with him, nor he progressing in class, so the LEA put him forward for a statement at the same time, and with the LEA’s support in getting his school place, the process was so much easier, but still required a phenomenal amount of input none the less.”

Cerebra has been able to help Juliette’s family with advice and support, help through our Wills and Trusts scheme and a much needed family break at our holiday home.

This year the London Marathon takes place on 24th April. It’s one of the biggest running events in the calendar and Cerebra was very lucky to get a place in this year’s race. Lots of people applied to us for the place and competition was tough – we were delighted to offer it to Juliette and wish her the best of luck.

If you’d like to support Juliette you can visit her JustGiving page here.

Cerebra has places in all sorts of running events across the country – from half and full marathons to mud runs and colour runs. So if you fancy challenging yourself and supporting Cerebra at the same time you can find out more here.