Category Archives: Research

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.

Preventing neonatal brain injury and childhood disability

The main objective of the Cerebra Perinatal Research Centre at the University of Leeds is to make a difference in the lives of expectant mothers and their children. In this article we take a look at why this research is important, the progress being made and the longer term impact of our research.

Cerebra Perinatal Research Centre: preventing neonatal brain injury and childhood disability

While most women can enjoy a healthy and uncomplicated pregnancy, there are three major adverse outcomes that may unexpectedly occur:

  • preterm birth (babies born more than 3 weeks early),
  • growth restriction (baby has a lower birth weight than expected), and
  • pre-eclampsia (high blood pressure in pregnancy).

Worldwide, and in the UK, these adverse outcomes affect one in five pregnancies. Alone, or in combination, they may have serious consequences for the mother and/or her baby.

Importantly, they are the leading causes of neonatal brain injury and later childhood disability (both cognitive and motor, ranging from poor academic achievement through to the spectrum of cerebral palsy). For many of these babies there is a need for additional neonatal support and care, especially for those born preterm.

Ideally, we would be able to predict which mothers are at risk and put in place preventative strategies. However, identifying at-risk mothers is difficult as the reasons for these adverse outcomes are complex and poorly understood.

Why our research is important

We are a research group focused on understanding the causes of these pregnancy complications. Since 2007 we have been engaged in identifying the pre-symptomatic detection of these conditions and promoting preventative strategies. Thus reducing the incidence and burden of childhood brain injury.

Our research has informed clinical practice, inspired multi-professional teaching, and led to a reduction in one of the key adverse outcomes, preterm birth. Over the period of Cerebra’s funding of the Centre, this work has led to a fall in preterm birth rates, with almost 350 fewer babies each year being born too soon.

The development of the SCOPE cohort supported by our first Cerebra programme grant confirmed the usefulness of a biomarker called placental growth factor. In combination with other clinical risk factors this enhanced prediction, improved outcomes, and reduced the need for unnecessary preventive treatment. The use of this biomarker has since been recommended for use in clinical practice (nice.org.uk/guidance/dg23).

Our research has always concentrated on ensuring effective clinical practice. Without successful implementation of research findings there will be no reduction in the numbers of babies born at risk of brain injury and later disability.

The research need is greater for those women whose risk status only becomes evident after an adverse outcome and for some conditions where no suitable preventive treatment currently exists. It is for these women and their babies that we need to develop new and innovative strategies that can lead to effective preventive interventions.

Some key indicators of progress are:

  • We have recruited more than 3,000 mothers for our prospective biobank TWS (Thousand Women Study)
  • We have published 26 research papers in peer-reviewed international journals and regularly present at national and international conferences
  • We have established partnerships and key collaborations with national and international groups, universities and organisations such as: Kings College London, the University of Manchester, the Royal College of Obstetricians & Gynaecologists, Baby Lifeline, Action on Pre-Eclampsia, Harvard University, SCOPE (the international pregnancy biobank consortium), and InterPregGen (genetics of pre-eclampsia) to name a few
  • We contributed to the NICE Diagnostics Committee’s report on the use of PlGF (placental growth factor) in the diagnosis and management of pre-eclampsia (nice.org.uk/guidance/dg23), and the upcoming recommendations on near patient diagnosis of preterm labour (nice.org.uk/guidance/indevelopment/gid-dg10017)
  • Our Family Integrated Care neonatal program received national recognition for their work, featuring on the BBC’s Victoria Derbyshire program
  • Our Research Midwifery team were an integral part of the highest-recruiting Reproductive Health & Childbirth specialty group in the NIHR-Clinical Research Network for 2016/17

Longer term impact of our research

The main objective of the Cerebra Perinatal Research Centre is to make a difference in the lives of expectant mothers and their children. Our research focuses on understanding pregnancy complications and developing diagnostic/preventive tools. One of our key objectives throughout the programme was the assembly of a comprehensive demographic, clinical and tissue biobank, the Thousand Women Study. This information will be used to characterise healthy pregnancy and help devise predictive and preventative strategies for adverse outcomes. With Cerebra’s funding we have recruited over three thousand women in mid-pregnancy that will enable us to carry out both discovery and validation studies into potential biomarkers and establish new predictive tests, but also evaluate the reliability of those proposed elsewhere.

We are also using innovative imaging technology that allows large areas of the placenta to be surveyed and visualised in 3D. By using this digital platform we will be able to perform a comprehensive analysis of healthy and diseased placentas and compare for structural or morphological differences. We hope to further our understanding of placental function in pregnancy complications and identify markers of susceptibility to disease, that could be used a prognostic tools.

We are also currently leading a clinical trial, the Minidex study, which will provide much needed data on the safety and efficacy of very low doses of steroids in preterm/low birth weight infants who are at particular risk of developing lung and brain injury.

Our research is important for families, and can make a huge difference to the lives of expectant mothers and in their children by reducing/eliminating the incidence and impact of brain injury.

You can find out more about our research programme and watch a short video here.

Working to improve children’s mental health

We are working on a joint funding bid with the Institute of Psychological Medicine and Clinical Neurosciences, Cardiff University for a ground-breaking project on children’s mental health.

The Institute of Psychological Medicine and Clinical Neurosciences (IPMCN) conduct high quality research into neurodevelopmental disorders and mental health problems in children and young people. Their research aims 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.

This Project focuses on developmental genetic conditions called ‘Copy Number Variants’ (CNVs). Some people are born with genetic changes called ‘Copy Number Variants’ (CNVs). In some cases a section of their genetic code might be repeated (a duplication), and in other cases a section might be missing (a deletion). Some CNVs appear to have little or no effect, but some can be very serious. Occasionally a CNV might even give someone better resistance to certain illnesses.Generally however, CNVs are a significant cause of learning and developmental disorders, some of which are linked to a higher chance of experiencing serious psychiatric disorders.

Our project aims to develop more effective ways of ensuring children with intellectual and developmental disorders (IDD’s) have greater access to modern personalized genomic and integrated psychiatry services according to parents’ needs and preferences. 

Research at Cardiff University means we know which CNV’s carry risk of debilitating psychiatric illness; understand environmental influences and are able to recognize indicative emerging behaviors and emotional difficulties. This knowledge, when shared, will facilitate earlier intervention that is more appropriate. Intervention that will improve longer-term outcomes for children and their families.

We will use this knowledge to empower anxious families to access the best care for their children and engage with and influence multi-disciplinary services for children with intellectual and developmental disabilities. This project will support the creation and implementation of new, highly innovative and locally tailored, Shared Decision and Referral Support Services (SDRSS) that link inter-agency communications and decision-making. These services will engage with and influence service providers as well as advising, and directly advocating for families in need of services.

As part of this project, we would want to develop strong partnerships with small condition specific support groups developing cooperative approach to sharing and developing information resources. Use Cerebra’s 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.

We will know shortly if our bid has been successful, so watch out for the press releases.

Research Advisory Committee – Call for applications

We are recruiting to our Research Advisory Committee. In this article you can find out more about what Cerebra does, the types of research we support, the role and responsibilities of the committee, your eligibility and how to apply.

Cerebra’s role

We believe that every family that includes a child with a brain condition should have the chance to discover a better life together. We listen to families that have children with brain conditions. We use what they tell us to inspire the best research and innovation. Then we help them put the knowledge into practice so they can discover a better life together.

By ‘brain condition’, we mean any neurodevelopmental disorder (NDD) that affects the developing brain, including those caused by illness, genetics or traumatic injury. Brain conditions include (but are not limited to) autism, ADHD, Down’s syndrome, learning disabilities, cerebral palsy, epilepsy and developmental delay.

Our key values are summed up in three key words:

Positive: our optimism helps families see past every barrier.
Inquisitive: a spirit of relentless discovery drives everything we do.
Together: our researchers, practitioners and families go further when they travel together.

Current clinical practice identifies each condition individually with its own set of identifying characteristics, but many neurodevelopmental disorders (NDD’s) occur together and/or share similar risk factors, behaviours and challenges. Thinking is gradually changing and ‘multi-morbidity’ is accepted as the norm. We work across rather than within NDD’s, giving us a unique perspective within the charity research sector.

The types of research we support

At Cerebra, we support two research approaches:

  • Research aimed at reducing the prevalence of preventable disabling conditions and thereby limiting the number of children whose health and wellbeing are likely to be adversely affected.
  •  Research that addresses a range of measures to ensure family needs are recognised and met.

Our current research portfolio reflects both approaches. Our research grants run from 1st January 2013 to 31st December 2019 and over that period, we will invest £4,213,689 in research.

Role and responsibilities

The role of the committee is ultimately to advise Trustees on the relative merits of particular pieces of research. As such, you will be invited to participate in grant application reviews, evaluate the impact of our current research and provide scientific advice which will inform Cerebra’s research strategy.

Grant reviews will involve reading, evaluating, submitting scores and comments on grant applications within an allotted time frame, and attend meetings.

Evaluating the impact of our current research will involve reviewing documentation and potentially site visits.

This is a voluntary role but out of pocket expenses, including travel and subsistence to attend meetings and site visits, will be paid. Commitment is crucial and time constraints will apply to allow us to complete our work and deliver on our commitments in a timely manner.

Are you eligible?

Applications are invited from individuals with a publication record in research (clinical and applied research in the fields that fall under Cerebra’s remit), success in obtaining research grants / awards and a willingness to devote the necessary time.

Posts are formally available from April 2018 and appointments are for a three-year term in the first instance.

Individuals who are interested in applying for one of these posts, or just want more information are encouraged to contact Georgia Mappa at GeorgiaM@cerebra.org.uk with any queries.

The terms of reference and governing documentation for this committee can be downloaded here.

How to apply

Applicants should submit a brief CV giving details of previous key posts, current post, roles in relevant committees and six most relevant publications. This should be accompanied by a written statement (maximum 1,000 words) which covers relevant previous experiences and expertise.

Applications should be submitted by 16th April 2018 and directed to Georgia Mappa at GeorgiaM@cerebra.org.uk

Successful applicants will be invited to join a welcome meeting with Cerebra staff.

Delivering legal rights through practical problem-solving

In this article we take a look at our Legal Entitlements and Problem-Solving (LEaP) Project – why we started it, what we do, what we’ve achieved so far and the longer term impact of our work.

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.

You can find out more about our LEaP project here.

Do you want to see better services for people with neurodevelopmental conditions?

We are working with other charities to understand how we can better support children with brain conditions and their families and we need your help.

We want to understand what life is like for the people we represent. We want to learn about the realities of living with more than one neurodevelopmental condition (diagnosed or not).

Our partners in this project include Autistica, the Neurological Alliance, MQ, Tourettes Action, Afasic, Epilepsy Action and many more. We all want to make sure families are properly supported. Working together we have developed a survey to understand the reality of life with a neurodevelopmental condition. Our goal is to understand what support and services are making a difference and where there are gaps in the help families need.

The more responses we get, the more we will understand about how to improve the support families receive and how we should be targeting our work.

So if you want to see better services for people with neurodevelopmental conditions have your say here.  It would be great if you could also share it with your family, friends and other contacts.

Thank you. Together we can work wonders for children with brain conditions.

#neurosurvey