Category Archives: Research

New look for Cerebra’s Legal Advice Project

We 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.

Dr Eduard Gratacós – Why health starts before birth

Dr Gratacos

Our research team at the University of Barcelona looks at identifying deviations in foetal brain development as early as possible to help prevent and/or minimise childhood disability.

Dr Eduard Gratacós explains his journey into research and why he believes that health starts before birth:

“I was trained in Obstetrics & Gynecology in the early 1990s. Soon after starting my medical residency, I found two new worlds I was not aware of, the fetus and research. Two discoveries that changed my ideas about what I wanted to be in my professional life.

Concerning fetal life, I had always thought that Obstetrics was just helping women to deliver. It struck me to realise that inside the mother there was the infinite world of another patient. Twenty-five years ago this concept was still quite new. Ultrasound had just revolutionised pregnancy follow-up. The mystery of what was happening inside the womb, hidden for all the history of medicine and humanity, was now becoming visible, and in real time! We were just in the beginning, but it was so amazing to think about the fetus as a patient, just as a child or an adult was. This notion impressed me so profoundly that I decided to dedicate my career to fetal medicine.

Research was my second discovery. During medical school, my ideas about me in the future were of a surgeon spending most of his day performing complicated operations. Just a few weeks after I became a resident, I started collaborating in research projects, and this quickly transformed the way I saw things. I suddenly realised that medicine existed thanks to research. The concept that you could create new knowledge that could eventually change the lives of people was amazing. It seems so obvious but you can study medicine for years and rarely think in these terms. Within a few months I was completely decided to dedicate my professional life to research.

So I ended up as a clinical researcher in fetal medicine. I first did my PhD in Barcelona and then moved to Belgium for a few years, where I had the privilege of joining one of the groups that pioneered fetal surgery in the world. When I came back to Spain in the early 2000’s I started a fetal medicine and surgery program. Over these years, we grew from a very small group of enthusiastic young people to a renowned international research centre with more than 75 people and one of the greatest scientific output in fetal medicine. I think our main findings can be summarised in one sentence: health starts before birth. The way our brain and heart will work during our lives is largely influenced by the life conditions in our mother’s womb. Pregnancy complications like preterm birth or fetal growth restriction may affect as much as one in ten pregnancies, and these fetuses and future children will be more prone to suffer neurodevelopmental and other health problems. We are looking for ways of reducing the burden of these pregnancy complications.

We have been supported by Cerebra for the last 13 years. We first demonstrated how children born preterm or with growth retardation had more neurodevelopmental problems. We later showed that ultrasound and magnetic resonance imaging were useful to understand how these problems occurred, and could help to identify those fetuses and babies at highest risk. Some of our research findings have been incorporated to current clinical practice. For instance, most medical societies recognise that brain Doppler must be used to identify and timely deliver fetuses with late-onset growth restriction. This change in clinical practice may benefit thousands of women in the UK, and hundreds of thousands in Europe and the world. In our current Cerebra research program we are investigating interventions that could protect the fetal brain and limit the consequences of brain injury. We also hope to demonstrate how maternal well-being is related with fetal and child neurodevelopment, and how we could provide tools to foster healthy brain development in utero.

Disease is part of nature. We as humans have the privilege and the capacity of investigating disease to understand it and trying to counter its effects on individuals. It may be hard for those suffering a disease to learn that research is so expensive and that it often takes a long time to achieve results that effectively improve things in “real life”. However, when we see where we are every ten years, we realise the impact of research. We must continue on this enterprise, for us and for the future generations.

Cerebra invests large amounts in promoting research and it does that in the most effective manner. With a policy of funding ambitious research programs for long periods, Cerebra allows researchers to undertake projects with a much higher chance of leading to real improvements. I think all Cerebra members, associates and supporters must be extremely proud and reassured that they are investing their money wisely and in a way that will change the life of many people in the future.

Cerebra has been with me for a substantial part of my research career, and I am extremely grateful and honoured for that. I hope that we can still do many important things together in the future. Thank you very much”.

Dr Gratacós is Professor of Obstetrics and Gynaecology and Director of the BCNatal national and international referral centre in Maternal Fetal Medicine.

This article is the latest in a series written by our Academic Chairs:

 

Chris Oliver – My Journey into Research: the Boy at the Pillar

Professor Chris Oliver explains his journey into research as well as the pioneering work of the Cerebra Centre for Neurodevelopmental Disorders.

“In 1981 I was training to be a clinical psychologist at the University of Edinburgh when the seminal documentary “Silent Minority” was aired on ATV. The content was a damning portrayal of abuse and inadequate service provision for children and adults with intellectual disability and was to prove more influential in driving reform than any government report of the day or since. One image in the documentary that has remained with me to this day was of a young boy tied to a pillar on the ward of a Victorian long stay hospital. The reason given for him being tied was that he banged his head very severely and this was how his behaviour was contained. After watching the documentary I made an unspoken commitment to the field of intellectual disability and considered careers in advocacy or clinical service. As I learned more about the field, it became clear to me that one part of the problem that underpinned poor service delivery was a lack of knowledge about how people with the most severe disabilities and difficult behaviour might best be supported and what interventions might decrease disabling behaviours such as self-injury.

Months later I was interviewed for a PhD position at the Institute of Psychiatry by Prof. Glyn Murphy, now at The Tizard Centre. After the interview she showed me around the treatment unit that I would work in for the next 12 years. As she did so, she espoused the same outrage at the documentary that I had felt but also spoke of how scientific method might inform our understanding of the behaviours that the boy at the pillar was showing. The combination of Glyn’s social conscience, scientific rigour and diligence was as inspiring to me now as it was then. Under Glyn’s tutelage, I was encouraged to understand fundamental causes of behaviour from different perspectives and develop new assessment and intervention methods that could be used in clinical practice.

Fast forward thirty five years and my programme of research still focuses on the same behaviours that I began to understand as a raw PhD student. With funding from Cerebra, my research team has been able to describe how genetics, brain development, medical conditions, cognitive profiles, emotion regulation and the environment each contribute and interact to cause difficult behaviours in children and young adults with intellectual disability. We have also tackled new areas such as sleep disorders, overeating, repetitive behaviour, and autism in genetic disorders. We have learned how pain, difficulties with communication, cognitive difference, impulsivity and sensory sensitivity can influence behaviour and we are developing new assessments to ensure these areas are attended to.

The 35 years that have flown by have been characterised by themes that stayed with me from my time as a PhD student. A prominent theme is that I have continued to work with students and postdoctoral research fellows who speak of and are driven by their social conscience, however derived. It is unfashionable in science to mention such a thing but not for us. A second theme has been the licence to study and research fundamental causes of behaviour and generate new information about how behaviours might be treated effectively. This opportunity provided by Cerebra is invaluable and contrasts with the majority of funding opportunities that focus on confirmation rather than innovation and force researchers to pose less ambitious questions rather than break new ground. A third theme has been a commitment to robust evidence and the importance of scientific method or “Data not Dogma” as a friend once printed on a t-shirt for me to celebrate the award of my PhD.

Since we opened the Cerebra Centre in 2008, 40 doctoral students have passed through its doors, each contributing in a unique way to what we know and do. The way we approach self-injury, sleep disorders, repetitive behaviour and a multitude of other problems is very different now to how it was when I watched “Silent Minority”. Further research challenges await us, such as deepening the understanding of the most severe self-injury and intractable sleep disorders, but in the last eight years we have generated a raft of research findings and there are 40 more people with doctoral degrees who can rise to these challenges and that’s got to be a good thing. However, one thing that has not changed is the reluctance of government to convert research findings into mainstream practice. I was reminded of this in 2011, when the BBC screened a Panorama documentary describing abuse and inadequate service provision at Winterbourne View. My mind returned then to the boy I had seen at the pillar, thirty years before.

I have learned two important lessons on my unfinished research journey. The first is that with determination, data and diligence, combined with a team blessed with more than their fair share of smarts, it is possible to change the most difficult behaviour, for most people, for most of the time. The second thing I have learned is that to change the behaviour of government, then in the words of Chief Brody, “You’re gonna need a bigger boat”.”

Prof. Chris Oliver, Professor of Neurodevelopmental Disorders at the University of Birmingham and Director of the Cerebra Centre for Neurodevelopmental Disorders.

What’s Your Story?

At Cerebra we believe in listening to the families we support and working with them to develop and share information and knowledge.

We are building a resource of blogs or articles written by young people themselves to help us challenge negative perceptions and promote a wider understanding of different conditions.

We are looking for young people to write about their experience of growing up with and living with a disability (parents can help if needed). The article can be about anything they like as we want this to be a chance for young people to write about what is important to them as an individual. The stories will be then collected together to form an information pack, as well as being published as individual blogs in our newsletter and on our website.

Our first story was written by Mair Elliot, who was diagnosed with autism aged 15. You can read Mair’s story here.

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

Mental Health and Well-being Conference Write Up

Improving Mental Health and Wellbeing for Young People with Autism, ADHD and Learning DisabilitiesOn the 28th April 2016 we held our Annual Conference at the Royal Society of Medicine in London on ‘Improving Mental Health and Well-being for Young People with Autism, ADHD and Learning Disabilities’.

Our aim is to make sure that the needs, and voices, of young people with these conditions are not lost in the current discussion surrounding mental health.

With the exceptionally high calibre of professional speakers, including a number of young people and the variety of topics covered, hopefully delegates felt that they enhanced their knowledge and understanding by attending our Conference.

The first session of the Conference was ‘Risks to mental health and well-being in children and young people with a neurodisability’. This part looked at the current research that is being conducted around genetic and biological causes of mental health disorders, mental health problems in children with intellectual disability and co-occurring psychiatric disorders in children with Autism Spectrum Disorder. The speakers in this session were:

Dr Andrew Cuthbert (Institute of Psychological and Clinical Neurosciences, Cardiff University)

Professor Richard Hastings (Centre for Educational Development, Appraisal and Research, University of Warwick)

Professor Emily Simonoff (Institute of Psychiatry, King’s College London)

After a superb lunch, the keynote address centred on ‘Mental Well-being and involving young people in defining the agenda’. This presentation was given by:

Dr Cathy Street (The National Children’s Bureau), accompanied by Jack Welch and Kiri Joliffe (NCB Young People Advisory Group)

This session focused on the benefits of children and young people’s involvement and participation in mental health and a short video was shown where young people talked about what it means to grow up happy. Both Kiri and Jack spoke, very bravely, of their own experiences of living with mental health issues and autism. They also stressed the importance of listening to young people.

Following a short break, the final session ‘Working to improve mental health and well-being’ comprised of talks given by:

Mair Elliot

This remarkable young lady gave an extremely powerful and moving speech about her own experiences of living with autism, mental health issues and psychosis.

Dr Jane Waite (Cerebra Centre for Neurodevelopmental Disorders, University of Birmingham)

Jane looked at how to spot the signs of anxiety disorders and effective interventions.

Dr James Cusack (Autistica)

James provided an update on the research projects that the charity are currently funding into mental health in autism.

Professor Tasmin For and Dr Astrid Janssens (University of Exeter Medical School)

Tasmin and Astrid gave details of a new project focusing on what happens to young people with Attention Deficit Hyperactivity Disorder (ADHD) in transition from children’s services to adult services which will use national surveillance, qualitative and mapping studies.

At the end of each of the sessions the Conference Chair, Professor Stuart Logan (Cerebra Professor of Paediatric Epidemiology, PenCRU at the University of Exeter), fielded questions from delegates which gave them the opportunity to clarify matters arising from the presentations. The speakers were able to answer these questions clearly and make the subject matter understandable.

You can watch the Q&A sessions here.

Additionally there were a number of exhibitors at the Conference who included Leigh Day, Hyphen Law, Tomcat, A Stitch Different, The Clarity Partnership, Autistica and The Challenging Behaviour Foundation. Alongside these there were information stands for our Academic Chairs at: University of Birmingham, Cerebra Innovation Centre, University of Exeter, University of Leeds and University of Warwick. Information was also available regarding our Family Research Ambassadors Projects.

Cerebra would like to thank all of the speakers and exhibitors for giving up their time to join us on the day. We are particularly grateful to have received sponsorship from:

  • Leigh Day
  • Foot Anstey
  • Hobbs Rehabilitation
  • Lyons Davisdon
  • Hyphen Law
  • Tomcat
  • Autistica
  • The Challenging Behaviour Foundation
  • A Stitch Different Community Group
  • The Clarity Partnership

What’s The Evidence? reports

The Peninsula Cerebra Research Unit (PenCRU), ‘What’s the Evidence?’ reports are an an ongoing series of short reports that seek to summarise what is known about the effectiveness of a particular treatment or therapy. These reports are a synthesis of existing research and are not new studies that have been carried out. They are written in responses to queries from families about specific therapies and treatments. These evidence summaries are intended to help families make informed decisions about treatments and therapies for their children’s health care. The team produce reports about both NHS and complementary or alternative therapies.

To find out more click here.

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.

 

Managing Challenging Behaviour Factsheet

Managing challenging behaviourSome behaviours are a challenge to professionals, teachers, carers and parents. This factsheet gives information on how to manage challenging behaviour by considering five key points:

What is challenging behaviour?
Why does challenging behaviour happen?
Understanding challenging behaviour
Where do I find professional help?
What further information is available?

Download Challenging Behaviour Factsheet PDF

Published 2015. This edition 2016. Review date 2018


 

Your response to the following statements will help us to make our information more useful. The questions relate to the resources that can be viewed on this page.

Problem-Solving Toolkit for Families

Cerebra 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.

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.