Category Archives: Research

Our LEaP Project helps change the Welsh Government’s guidance on continence products

Have you been told that you can’t have more than 4 continence products a day, even if your child needs more? Read on to find out how to get the products you need.

Our Legal Entitlements and Problem-Solving (LEaP) Project helps families who are struggling to get the support they need from health or social care services. Last year, we told you how we had helped Louise get continence products for her daughter, Rhiannon, who’s 9 years old and has Wolf-Hirschorn syndrome.

The local continence service had told Louise that it couldn’t supply more than 4 continence products per 24 hours, even though Rhiannon needed more because of her condition.

We noticed that the Welsh Government’s guidance on continence products contradicted itself – one part said that the number of products supplied would depend on a child’s individual needs, but another part said that there was a strict limit of 4 pads per day and that families who needed more would be told to buy their own. We wrote to the Welsh Government’s Cabinet Secretary for Health to highlight the problem and we were told that the guidance would be reviewed.

We’re very pleased to report that the Welsh Government has published a Welsh Health Circular , which has replaced the old guidelines with the new ‘Guidance for the provision of continence containment products to children and young people’.

The Welsh Government accepted our argument that the strict limit of 4 pads per day was “inconsistent with public law principles and a breach of children’s dignity and it does not take into account the need for a full assessment”. The new guidance makes it clear that while four pads per day may be enough for most children and young people, the number of products supplied to families should always meet a child’s individually assessed needs.

If you’ve been told that there’s a limit on the number of products you can have and you live in Wales, tell your local continence team about the above guidance and/or use our template letter to make a complaint. We also have a separate template letter for parents who live in England.

Improving the mental health of children with brain conditions

We are launching a new project to help families of children with brain conditions access timely and appropriate mental health services. It’s aimed at families of children with rare developmental brain disorders, with a genetic cause, that carry a high risk of them developing conditions such as ADHD, autism, or schizophrenia.

We are working with The Institute of Psychological Medicine and Clinical Neurosciences (IPMCN) at Cardiff University on the project. The project will use the expertise developed at Cardiff to inform parents of the risk factors, challenges and behaviours their child may experience and give them the knowledge they need to seek early support. The project also aims to encourage genetic and mental health services to work together for the benefit of children and families.

As genetic testing becomes even more effective, cheaper and informative the numbers of children receiving a genetic diagnoses will increase. Over the last 10 years Cardiff University has built one of the largest and most detailed studies of individuals with these rare brain conditions. They have gained major insights into their development and the early indications that individual children might be autistic, have ADHD, or develop schizophrenia. The earlier we can intervene to support the child and their family the better the long term outcomes are likely to be.

We want to ensure that we have the evidence based information to pass onto parents in a way they can understand and use to make informed choices about what is best for their child and their family and to access timely and appropriate mental health services. At the same time we will work with clinicians so that they understand that these children face greater risks and challenges and should be able to access services at the earliest opportunity.

The understanding of genetic causes for brain disorders has many potential benefits for families, doctors and society. Genomic medicine promises greater opportunities to:

  • develop new treatments based on an individual’s biology and more precise diagnosis.
  • provide better information on anticipating and preventing serious mental and physical health impacts.
  • help parents, doctors, educationalists and wider society to better understand the underlying causes and consequences of developmental brain disorders, confronting some of the stigma and discrimination children and their families continually face.

As part of this project we will:

  • Identify other voluntary organisations with overlapping interests and involve them in the stakeholder advisory panel.
  • Develop strong partnerships with small condition specific support groups developing cooperative approaches to sharing and developing information resources.
  • Use our current skills, capabilities and family contacts to develop high quality accessible multimedia resources for families.
  • Work collaboratively with service providers to develop and test a model way of working to achieve improved health and education outcomes for children. An approach that can be shared and developed across authorities.
  • Contribute to teaching and training at the University Medical School, ensuring future generations of clinicians are better equipped to deliver services to help children with intellectual and developmental disorders in harmony with the wishes of their families.

We are currently recruiting a coordinator for this work who will hopefully start in January 2019. In the first instance our work will be focused in Wales, but will be rolled out across the UK as the project develops.

Two thirds of the cost of this ground-breaking and very exciting new project is being met by the Welsh Government and Innovate UK with the balance needing to be raised through the generosity of our amazing supporters. Our contribution to this project, which will have far-reaching effects, is just under £2,000 per month for the next three years.

If you would like to be a part of something amazing and help make a real and lasting difference to the lives of children with brain conditions and their families then please make a donation towards the costs – your contribution, no matter how small, will help others. You can donate online or call us on 01267 244206.

We’d also love to hear from you if you are the parent or carer of a child with a  brain condition who is experiencing problems with their mental health. Please contact us on sarahj@cerebra.org.uk

Support in the Early Years Survey

We are working with the Family Research Group at the University of Warwick, as well as with Mencap,  Ambitious about Autism and ENABLE Scotland on a new study focusing on Support in the Early Years for families of young children with learning disability and/or autism in the UK.

If you are the parent or parental caregiver of a child aged 0-6 years old (from birth until the day before their 7th birthday) with a diagnosed or suspected learning disability and/or autism, we would like to invite you to participate by completing our brief survey.

Your child might have other conditions as well – as long as your child has a diagnosis or suspected diagnosis of a learning disability (sometimes referred to as intellectual disability, developmental delay or special educational needs) and/or autism and lives in the UK, we are keen to hear from you.

We are exploring the experiences of families of young children with learning disability and/or autism in the UK, particularly related to their use and access to support services such as early intervention and early years support. This study will further our understanding of what support families access in the early years, what may prevent them from accessing services, and what could help to improve access to early years support. This research will also help us to develop ways to increase access to early intervention and support for families of children with learning disabilities and/or autism in the UK.

You can find out more about the study here 

You can complete the survey online here  or request a paper copy by e-mailing familyresearch@warwick.ac.uk.

If you have any questions or would like to know more about the study, please don’t hesitate to contact the research team by email: familyresearch@warwick.ac.uk or telephone: 02476 575 866.

We really appreciate your time and support. Thank you.

Partnership pioneers better support services

cardiff university logoWe have forged a partnership with Cardiff University to improve services for families of children with debilitating brain disorders. The partnership aims to exploit Cardiff’s world-leading research in genetics, psychiatry and brain development in order to revolutionise Third Sector support for children with severe learning and developmental challenges.

Funded by a Knowledge Transfer Partnership grant, the project will help position Cerebra as a leader in mental health support for children and young people with brain conditions where co-occurring psychiatric conditions are widespread and often poorly managed.

The partnership aims to develop ground-breaking advocacy and procurement initiatives to improve vital early intervention and diagnostic services for children.

Carmarthen-based Cerebra works with over 47,000 families, professionals and organisations across the UK with a vision to offer a better life together for every family that includes a child with a brain condition.

The charity works across intellectual and developmental disorders (IDDs), giving them a unique perspective within the charity research sector – an approach that allows them to be child and family focussed. They work with families, academics and practitioners to fund research they can share in a way that families can use.

Tracy Elliott, Head of Research & Information at Cerebra, said: “From our work with families we know that problems accessing timely and appropriate public services is an issue that impacts on the quality of life of many families. They tell us this when they contact us, and these problems led to the development of our Accessing Public Services Toolkit.

“Families experience significant challenges in accessing timely and appropriate services for their children. Our project with Cardiff University aims to develop more effective ways of ensuring children with IDDs have greater access to modern personalized genomic and integrated psychiatry services according to parents’ needs and preferences.”

The KTP will transform the value of information given to parents to make informed choices for their children and promote evidence-based interventions.

The partnership’s mental health and developmental disorders research team is based at the MRC Centre for Neuropsychiatric Genetic and Genomics at Cardiff University School of Medicine. Dr Jane Lynch at Cardiff Business School will provide procurement and engagement expertise.

Andrew Cuthbert, Research Genetic Councillor said, “We are thrilled to have this award and to be collaborating with Cerebra. Their passion and knowhow will undoubtedly transform lives through better mental health support for thousands of families across the UK. It’s a unique opportunity to translate robust evidence on children’s development and mental health into genuine benefits for families.”

Professor Marianne van den Bree, at the MRC Centre said, “We are very excited about this collaboration with Cerebra. It will offer great opportunities for us to reach many families with a child with brain disorders and help make a difference, based on our research.”

Welsh Government and Innovate UK will grant fund the Knowledge Transfer Partnership (KTP), a scheme that sees a university graduate (Associate) apply academic expertise to help an external organisation.

Recruitment for a Mental Health Research & Development Associate – Children with Developmental Disorders, who will manage the project, is now underway. Applications for a Postgraduate in psychology or related disciplines are sought, who are passionate about meeting the needs of families of children who have learning disabilities and rare developmental disorders. The role holder will have a good appreciation of the principles of effective multi-agency support, good data analysis skills, and will be able to work both independently and with a range of different teams and organisations effectively.

Find out more about this role here. 

For further information about KTPs contact the Cardiff KTP team: ktp@cardiff.ac.uk

Understanding and reducing sleep disorders in children with development delay

The Sleep Project at the Cerebra Centre for Neurological Disorders at Birmingham University is studying sleep in children with neurological conditions. In this article Professor Chris Oliver and Dr Caroline Richards explain the need for the project and the progress that’s being made.

Why is the Sleep Project important for families?

Sleep is a universal phenomenon, influencing almost every human activity. We need good quality sleep in order to learn new information, pay attention to the world around us, and store memories effectively. Sleep influences our mood, how hungry or full we feel, as well as fundamental biological processes such as cell development. Given the wide-reaching impact of sleep, it is not surprising that poor sleep has a significant negative impact on people.

Unfortunately, short and disrupted sleep is common in children with neurodevelopmental disorders. Children with autism, intellectual disabilities and a variety of rare genetic syndromes are at greatest risk of experiencing the negative consequences of poor sleep. What’s more, these children may already find learning new information, maintaining attention and regulating mood and behaviour very difficult; compromised sleep in these groups is therefore a huge concern.

Despite this great need, research on sleep in children with neurodevelopmental disorders is sadly lacking. We know the least about sleep in the children for whom sleep is arguably most important. The Sleep Project, conducted by the Cerebra Centre for Neurodevelopmental Disorders will change this.

We lead cutting edge research to understand the different types and causes of sleep problems in children with neurodevelopmental disorders, identifying how poor sleep impacts on children and their families and trialing new interventions to reduce sleep problems more effectively.

What progress has the Sleep Project made since Cerebra began to support it?

Projects:

We have completed five core components to date:

  1. We have conducted a large scale interview study, speaking with fifty parents and carers of children with Angelman syndrome (a rare genetic syndrome associated with sleep problems) to identify their concerns and priorities in sleep.
  2. We completed a cross-syndrome sleep survey with over 190 children with Angelman syndrome, Smith-Magenis syndrome, tuberous sclerosis complex and autism spectrum disorder. This provided robust evidence of syndrome specific sleep problems and unique pathways to sleep disturbance. We found that knowing the cause of a child’s neurodevelopmental disorder is essential to ensure accurate understanding of their sleep problem.
  3. We have completed the largest direct study of sleep using Actigraphy in children with Angelman syndrome, Smith-Magenis syndrome and Autism Spectrum Disorder. In this study over 100 children wore sleep trackers (Actigraphs) for a week, to provide direct evidence of their sleep-wake cycles. This resulted in the, largest, most robust international data on sleep patterns and the daytime impact of poor sleep in these rare groups.
  4. We have collected novel night-camera video data on children in the Actigraphy study and are analysing these data to better understand what children do when they wake up. We will use our understanding of waking and settling behaviours to develop more tailored interventions for sleep.
  5. Finally, we have conducted an in-depth study of sleep and parental stress, through collecting Actigraphy, self-report and bio-marker (cortisol) data from parents of children with neurodevelopmental disorder. This will enable us to quantify the impact of children’s poor sleep upon parents and carers.

Families who have taken part in these studies have received detailed individualised feedback reports, and the results of these studies have been published or are in review at leading academic journals.

Public Knowledge:

A key aim of the sleep project is to ensure that as we improve scientific understanding of sleep in children with neurodevelopmental disorders, we simultaneously share that information with families, clinicians and educators.

Research traditionally takes 10 to 17 years to influence real world practice – that is an unacceptably long time. We are committed to reducing this lag. In addition to publishing our research in high-impact academic journals and speaking at scientific conferences, we provide regular talks on sleep to inform and update parents and professionals. These have included talks at schools, parent support conferences, national professional networking events and large public conferences such as The Autism Show.

In addition to this, we co-produced a Sleep Guide for parents, in partnership with Cerebra which is freely available via Cerebra’s website. The guide explains how problems with sleep may develop, the specific nature of sleep problems in children with rare genetic syndromes, how to assess sleep problems, and how to intervene to improve sleep.

Alongside the guide, we also co-produced brief Sleep Cards to be used by Cerebra’s Sleep Service. These provide bite-size chunks of information on sleep interventions that the Cerebra Sleep Practitioners can give to families they are working with, to help parents and carers to implement evidence-based sleep interventions.

We have also launched new sleep content on our dissemination website: Further Inform Neurogenetic Disorders (FIND). The site has had over 14,000 page views since it was launched and continues to attract a high rate of hits. The sleep section on FIND contains accessible information on topics such as: current sleep knowledge, why it is important to investigate sleep in people with genetic syndromes, what interventions are available for sleep and the sleep research that we have been conducting.

Investing in People

The Sleep Project will increase expertise in Sleep Research in the UK. Through the first four years of the project, we have trained two PhD, seven Clinical Doctoral, three Masters and 10 Undergraduate students. The majority of these students are now working in either research or clinical psychology and therefore this investment in training has increased UK expertise in sleep problems in neurodevelopmental disorders.

What will be the longer term impact of the Sleep Project for families?

The long term goal of the Sleep Project is to improve sleep outcomes for children with neurodevelopmental disorders, ensuring that they have the same opportunities to thrive in life as their typically developing peers. With sustained funding, the Sleep Project will ensure that children with neurodevelopmental disorders have access to tailored assessments and timely interventions to ensure the best quantity and quality of sleep for them and their families.

Prepared by Dr Caroline Richards and Professor Chris Oliver at The Cerebra Centre for Neurodevelopmental Disorders.

Delivering legal rights through practical problem solving

In this article we explain our Legal Entitlements and Problem-Solving (LEaP) Project with the Centre for Law and Social Justice, the School of Law, University of Leeds.

Why we started the Project

Disabled children and their families sometimes need extra support in order to have a normal everyday life – for example, help with bathing or eating, moving around or communicating. Local councils and the NHS have legal duties to meet these needs by providing support, such as someone to help with personal care at home, specialist equipment, adaptations, short breaks or therapy services. However, we know from our work with families that, in practice, parents often struggle to get the right support for their children and a lack of support can harm the health and well-being of the whole family.

The LEaP Project aims to find out why families struggle to get the help that they’re legally entitled to and what can be done to change things. We want to learn more about the problems families face, so that we can work out ways of overcoming them and helping families to get the support they need. The Project is led by Luke Clements, Professor of Law and Social Justice at the University of Leeds.

What we do

We invite families to tell us about the problems they face in getting the support they need. With expert support from the team at the University, we provide legal information and advice to help families overcome those difficulties. We help families to understand what their legal rights are and what they can do if they fail to get the support they need. We also use the information we get from individual cases to write template letters, factsheets and guides, which can help other families in similar situations.

When we see from our casework that several families are having similar problems, we ask our student volunteers at Leeds to study this problem in more detail (often by doing a survey) and then produce a report with ideas about how policy and practice can be changed to avoid these problems in the future. Past projects have looked at short breaks, school transport and disabled facilities grants.

Then we use the knowledge gained from our advice casework and student-led projects to improve our understanding of why these legal problems occur and to work out practical ways of overcoming them. We want to find out which problem-solving techniques help families to cope better with the challenges they face and how councils and the NHS can change the way they work.

What we’ve achieved so far

(1) We’ve attracted funding from the Economic and Social Research Council and from Leeds University, which has enabled us to fund a PhD student, develop our Problem-Solving Toolkit (see below) and fund a research assistant post at the University.

(2) In 2013 and 2014, we published compilations of our advice letters (the ‘Digests of Opinions’) to help other families in similar situations.

(3) In 2016, we published a report about ‘short breaks statements’ (these statements are published by councils in England and explain how families can get breaks from their caring responsibilities). The report considered how accessible and accurate these statements were.

(4) We published a guide for families in 2016 called the “Accessing Public Services Toolkit”. The Toolkit describes some of the common problems families face in dealing with councils and the NHS and suggests ways of solving those problems. A second edition was published in 2017, along with a separate version for families in Scotland. We’ve developed an ongoing programme of workshops across the U.K. to share the Toolkit with parent groups.

(5) In 2017, the student volunteers at Leeds interviewed a small number of families who had applied for a disabled facilities grant to pay for home adaptations. We published a report called “Disabled Children and the Cost Effectiveness of Home Adaptations and Disabled Facilities Grants”, which considered the benefits of investing in these adaptations, including cost savings and improvements in families’ well-being. The report was launched at a conference at the University of Leeds on 12 July 2017 and resulted in meetings with senior members of Leeds City Council, the NHS Leeds Clinical Commissioning Group Partnership and Foundations (the national body for Home Improvement Agencies), along with an article in the Guardian newspaper.

(6) On 12 July 2017, the Project Team also launched a research report called “Local Authority Home to School Online Transport Policies: Accessibility and Accuracy”. This report explains how difficult it is for families to find accurate information about school transport on council websites and how some transport policies are more restrictive than they should be. As a result of the report, the team met with representatives from the Department of Education and worked with the charity, Contact, on their inquiry into school transport, including giving evidence to a select committee at Parliament. The Department for Education has decided to review its guidance for councils on school transport and it is planning to produce an accessible template for council websites, so that school transport information is more easily available to families. The team has been asked to share its research data with the Department to help with this work.

(7) As a result of our casework, the Welsh Government has agreed to make its guidance on continence products more clear, so that families are no longer told that they can only have a maximum of 4 products a day.

(8) We’ve helped families in England and Wales get the services they need – and persuaded councils to change their policies so that other families aren’t disadvantaged. We’ve built on our casework by publishing parent guides, for example on school transport for England and Wales, so that we can share the lessons we’ve learned with many more families. We’ve also published a series of template letters and factsheets for parents to use.

Longer term impact of our research

We know that our work with families helps them to develop the knowledge, confidence and skills they need to get support:

• “Thank you for all your help and support. I don’t think I would have got anywhere without it.”
• “We appreciate the continued support to empower us to go through this process.”
• “I really do appreciate your support. I hadn’t realised there was so much info available to research.”

We will continue to support families and draw on their experiences to help us plan our research and publish resources which help other families in similar situations.

In 2018, our student volunteers will look at three research topics – how difficult it is to apply for a disabled facilities grant, how well the direct payments system works for disabled people and what social care charges disabled people have to pay for their care costs.

We also want to investigate how policies and practices within councils and the NHS can sometimes make it more difficult for families to get the support that they’re entitled to. We’re developing a detailed research plan, which will involve working with councils and the NHS to explore why these barriers exist and what can be done to remove them. We hope to get grant funding in 2018 for this important study, so that we can help to introduce changes within these organisations which will make it easier for more families to get the support they need.

The accessibility of Disabled Facilities Grant application forms

A survey has found that about half of local authorities in England do not make application forms freely available for home adaptation grants – known as Disabled Facilities Grants.

Key findings included:

  • The law imposes strict timescales for the processing Disabled Facilities Grants (DFGs) – but if local authorities withhold the application form, they can deny individuals their right to apply for a grant and stop the ‘clock ticking’ for the purposes of the statutory timescales.
  • As the research report notes, a failure to make forms available is not only frustrating the will of Parliament (para 5.02) it is also frustrating the will of the Government, which has increased significantly the relevant grant to local authorities for DFG awards (para 2.15-2.17);
  • Given the prevalence of the problem identified by the research it suggests that the Secretary of State for Housing, Communities and Local Government should use his powers to ensure that failing local authorities act in accordance with the law and relevant guidance (para 5.11).

The Research was funded by the disabled children’s charity Cerebra and undertaken by students at the School of Law, Leeds University under the supervision of Professor Luke Clements with support from the Access Committee for Leeds a Disabled People’s Organisation with national expertise in home adaptations.

Download the full report (PDF)

Last year a similar research project, concerning adaptations to family homes to accommodate the needs of young people with Autistic Spectrum Disorders suggested that adaptations of this kind were highly cost effective (that an investment in adaptations amounting to £300,000 had avoided social services expenditure of about £1.5 million – ie a five-fold return on the investment). You can read the 2017 report here.

Disability related expenditure and pets care costs

A survey has found that many disabled people are unable to afford to keep a pet dog or cat due to the impact of council charges made for their social care support.

A survey of 46 English social services authorities found that eight out of ten would not make allowances for pet care expenses ‘in any circumstances’ when calculating the charges disabled people were required to pay for their social care services.

Background

For many disabled people their pet is of incalculable importance to their sense of well-being. Many experience severe isolation and for many their pet is their main companion. The report outlines the evidence suggesting that pets can have profoundly beneficial impacts on key measures of well-being: physical, mental and emotional – as well as providing for many a sense of security.

This research appears to be the first concerning the impact of local authority social care charging on pet owning disabled people living in the community.

Findings include:

  • Despite the evidence concerning the generally positive impact of pet ownership on well-being and the many social policy references to pet ownership as a potentially innovative mechanism for addressing eligible social care outcomes for disabled people, no local authority had a written policy concerning the treatment of such expenditure (para 7.07).
  • Only five authorities (11% of the sample) indicated that such costs could be taken into account ‘in any circumstances’ – although on analysis it appears that nine (19%) would in fact be prepared to consider such costs ‘on a case by case’ basis (para 7.07).
  • Local authority charges that ignore pet care costs will subject disabled people to severe hardship. After paying their council’s social care charge, disabled adults under pension age are likely to be left with no more than £75.25 per week (and in some cases as little as £48.17) from which they are expected to pay for (among other things) their food, gas, water, electricity, telephone bills, travel costs, clothing, house repairs, equipment purchase, insurance expenses and recreational activities (para 4.04).

The research recommendations include that the Secretary of State for Health and Social Care require that where reasonable pet care costs be taken into account for charging purposes (by amending the list of items in the Statutory Guidance at Annex C para 40).

The Research was undertaken by students at the School of Law, Leeds University as part of the School’s Cerebra Legal Entitlements and Problem-Solving (LEaP) Project and pro bono programmes under the supervision of Professor Luke Clements and Sorcha McCormack.

Download the full report (PDF)

Knowledge Transfer Partnership success!

We are delighted to announce that we have been successful in our Knowledge Transfer Partnership (KTP) bid with the Institute of Psychological Medicine and Clinical Neurosciences, Cardiff University. This KTP is funded by Welsh Government and Innovate UK. This is what it is about.

What is a Knowledge Transfer Partnership (KTP)?

The Knowledge Transfer Partnership (KTP) scheme helps businesses in the UK to innovate and grow. It does this by linking them with an academic or research institute and a graduate. A KTP enables a business to bring in new skills and the latest academic thinking to deliver a specific, strategic innovation project through a knowledge-based partnership.

Each KTP is a 3-way partnership between:

  • a UK-based business or a not-for-profit organisation
  • an academic or research institute
  • a suitably-qualified graduate, with the capability to lead a strategic business project

We have support from Cardiff and Vale NHS Trust, Cardiff Business School and The National Centre for Mental Health (NCMH) at Cardiff University. The KTP will allow us to develop new skills that we can use in other ongoing Cerebra work, and vice versa. The skills we have learnt from other Cerebra projects will also be beneficial in this project. The KTP has synergy with our academic partnerships with the universities of Birmingham, Warwick and Leeds.

Who are the Institute of Psychological Medicine and Clinical Neurosciences, Cardiff University?

The Institute of Psychological Medicine and Clinical Neurosciences (IPMCN) conduct high quality research into neurodevelopmental disorders and mental health problems. A main research interest is to learn more about the early origins, development and impacts of neurodevelopmental and mental health problems on children, young people and their families.

Their overall aim is to improve prevention, interventions and policy. The experiences of people with copy number variants (ECHO) study group within the Institute is led by Professor Marianne van den Bree and focuses on people with genetic conditions caused by chromosome changes called ‘Copy Number Variants’ (CNVs).

The Project

The project aim is to develop more effective ways of ensuring families of children with intellectual and developmental disorders (IDDs) have greater access to modern personalised genomic and integrated psychiatry services according to parents’ needs and preferences.

The project focuses on children and young people with CNVs. Some children with CNVs have a small segment of their DNA repeated (a duplication), other may have a segment missing (a deletion). Some CNVs appear to have little or no effect on children’s health or development, but some can be very serious. CNVs are a significant cause of learning difficulties, developmental delay, serious medical health problems and increased risk of psychiatric disorders, such as ADHD, autism, of schizophrenia.

Our project aims to develop more effective ways of ensuring children with intellectual and developmental disorders (IDDs) have greater access to modern, personalised genetic and integrated psychiatry services according to parents’ needs and preferences. This KTP aims to transform our capability to support families of children with these genetic disorders by taking advantage of new knowledge and capabilities from the Cardiff University Institute of Psychological Medicine and Clinical Neurosciences to develop new solutions and joint partnerships that will bring lasting benefit to thousands of children and their families.

The Chief Medical Officer’s report 2012 on children with IDD stated many disabled children have serious difficulties accessing statutory services, and inadequate co-ordination within and between services is a major concern. Our own Accessing Public Services work certainly supports this finding. The Welsh Government’s Strategic Plan for Rare Disorders is committed to promoting equality of access for everyone with a rare disease to follow clear care pathways providing high quality services through integrated personal care plans. This KTP will address the problems identified by The Chief Medical Officer and contribute to turning the Welsh Government’s strategic goal into a reality for children and their families.

This KTP has the opportunity to benefit at least 3,500 children in Wales with rare developmental disorders attributed to CNVs. In England over 10,000 children per year are diagnosed with CNVs. As genetic testing becomes even more effective, cheaper and informative the numbers of children receiving genetic diagnoses will accelerate. The long-term potential impact of this KTP is therefore significant in this emerging branch of medicine. Knowing which CNVs carry risk of debilitating psychiatric illness; understanding environmental influences; and being able to recognise key signs of high risk will help earlier and more appropriate intervention. Thus, this KTP has the opportunity to improve longer term outcomes for children and their families.

The ECHO study research team consist of world leading academics and clinicians. Over the last 10 years it has built one of the largest and most detailed studies of individuals with CNV internationally. Studying these children over time, major insights have been gained into their development, strengths and weaknesses. In harness with our expertise around working with families and developing award winning information resources this partnership will further Cerebra’s goal of maximising the empowerment of anxious families to access the best care for their children and also enable us to engage with and influence multi-disciplinary services on behalf of children with intellectual and developmental disabilities.

The KTP will develop efficient cross-disciplinary working between Cerebra, IPMCN, Cardiff Business School, and The National Centre for Mental Health and statutory and voluntary sector partners. We will pilot new approaches within Cardiff and Vale NHS trust with the long-term aim of advising and supporting other NHS Trusts to adopt similar approaches thus improving outcomes for children and their families.

As part of this KTP we will:

  • Identify other voluntary organisations supporting children with IDD and involve them in the stakeholder advisory panel.
  • Develop strong partnerships with small condition specific support groups developing cooperative approaches to sharing and developing information resources.
  • Use our current skills, capabilities and family contacts to develop high quality accessible multimedia resources for families.
  • Work collaboratively with service providers to develop and test a model way of working to achieve improved health and education outcomes for children. An approach that can be shared and developed across authorities.
  • Contribute to teaching and training at the University Medical School, ensuring future generations of clinicians are better equipped to deliver services to help children with intellectual and developmental disorders in harmony with the wishes of their families.

Costs

Two thirds of the cost of this ground-breaking and very exciting new project is being met by the Welsh Government with the balance needing to be raised through the generosity of Cerebra’s amazing supporters.
Our contribution to this project, which will have far-reaching effects, is just under £2,000 per month for the next three years.

If you would like to be a part of something amazing and help make a real and lasting difference to the lives of children with brain conditions and their families then please make a donation towards the costs – your contribution, no matter how small, will help others.

You could call Debbie on 01267 244206 to make a one off or regular donation or donate on-line. Our website also has some great fundraising ideas.

Effective interventions for long term change

At the Cerebra Centre for Neurodevelopmental Conditions, University of Birmingham, the aim is to identify the causes of the most pressing problems for children with neurodevelopmental disorders in order to develop effective interventions that are delivered at the right time to enable long term change.

Our work

What’s the problem? It sounds like a straightforward question but it’s not. Many children with neurodevelopmental disorders experience a range of problems that impact negatively on their lives and the lives of their families. These problems change as the children grow up and include autistic like conditions, self-injury and aggression, sleep disorders, and emotional and mental health problems.

Critically, the chance of having one of these problems is linked to the cause of neurodevelopmental disorders. Children with autism who cannot speak are more likely to self injure, children with Smith-Magenis syndrome are much more likely to have problems sleeping and children with tuberous sclerosis complex are more likely to experience hyperactivity and be impulsive. Once we know the cause of a neurodevelopmental disorder we now know the chances of a specific problem occurring and this makes it possible to plan for the future and develop early intervention strategies. At the Cerebra Centre we have identified specific problems in more than 20 neurodevelopmental disorders.

What causes these problems? By studying the problems we have identified in specific neurodevelopmental disorders, we have been able to identify specific causes. For example, we have shown that pain resulting from untreated gastro-oesophageal reflux (severe heartburn) can be a cause of self-injury, breathing problems can make sleep problems worse in Smith-Magenis and Angelman syndromes and problems with flexible thinking can lead to severe anxiety in social situations. At the Cerebra Centre we can make specific recommendations for interventions and also promote early intervention targeting these causes.

How can clinicians, teachers and parents identify the cause of a problem? Whenever a problem develops, careful assessment is critical to choosing the right intervention. Knowing that the chance of a problem occurring is higher in some neurodevelopmental disorders than others means that priorities for assessing causes can be tailored for individual children. However, assessment of causes is difficult when children have very severe disabilities and limited communication.

New assessments and road maps for the decision making process during assessment are needed to make sure the cause of any problem is identified accurately and efficiently. This means the right treatment is more likely to be delivered quickly. At the Cerebra Centre we have developed new assessments for children who are severely disabled and nonverbal to identify clinically significant low mood, pain, unusual social behaviour, impulsivity and overactivity and repetitive behaviours. We have also made significant progress on protocols for the assessment of self-injury and sleep disorders.

Our information

It is estimated that it takes between 10 and 17 years for a research finding to be implemented in practice. That is too long. We do publish the results of our research in scientific journals so that they are subject to peer review and made available to other researchers and clinicians. However, we also provide information based on our latest research at parent and practitioner meetings, the FIND website, presentations at professional and scientific conferences and websites such as Researchgate. At the Cerebra Centre we deliver about one presentation a week at meetings, our research papers are read 150 times a week on Researchgate and elsewhere, 200 parents very year receive an individualised report on their child and around 14,000 people have visited our website.

Our team

At the heart of the Cerebra Centre are the people who do the work. At any one time we will have between 30 and 40 people working in the Centre. Some are Postdoctoral Research Fellows who completed their PhD in the Centre and have gone on to win their own grants to fund further research and support further PhD candidates. This generational progression has been critical to the success of the Centre. Other people who work in the Centre are Undergraduate, Masters and Clinical Doctoral students on placement. The core team supervise the work of these students who make a significant contribution whilst being trained in research methods. At the Cerebra Centre we have trained more than 50 Doctoral students and 30 Masters students. Last year, Postdoctoral Research Fellows associated with the Centre were awarded close to £500,000 in grant funding in addition to funds provided by Cerebra.

Our future

The Cerebra Centre is now well established with an international reputation, the largest database of rare genetic disorders in the world, a team with clinical and research training, support from parent groups, effective dissemination, demonstrable impact, a strategy for future development and a clear purpose. The task now is to convert our past and future findings into effective assessment and intervention delivered at the right time in the right way. At the Cerebra Centre we will continue to develop innovative, accurate and efficient assessments to identify the causes of the problems experienced by children with neurodevelopmental disorders and develop new interventions that can be delivered at the right time to enable long term change.

You can find out more and watch a short video about our work at Birmingham here.