Tag Archives: University of Leeds

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.

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.

School Transport Report

The school of law team at the University of Leeds

The school of law team at the University of Leeds

Our student researchers at the School of Law, University of Leeds have published a report about the accuracy and accessibility of school transport information on local authority websites in England.

The students looked at 71 websites and identified serious failings in the information provided to families.  Almost 40% of the websites failed to clearly explain the legal rights of children with special educational needs or disabilities to school transport. The report also highlights how some school transport policies are more restrictive than they should be (see the examples on page 12/13).

You can read the full report here.

If you have a school transport problem, our Parent Guide explains what you can do to solve it.

Disabled Facilities Grants

The school of law team at the University of Leeds

The school of law team at the University of Leeds

Our student researchers at the School of Law, University of Leeds, have published a report on Disabled Facilities Grants and home adaptations.

Disabled children and their families are legally entitled to a grant to pay for necessary adaptations to their home to improve accessibility and independent enjoyment of their surroundings. These are known as Disabled Facilities Grants (DFGs) and are usually for sums up to £30,000. The main aim of our DFG Project is to assess the cost effectiveness of DFGs and the wider impact adaptations have on the disabled child and their families.

The latest report from the team considers the benefits of investing in home adaptations for disabled children, including cost savings and improvements in well-being.

You can read the full report here.

New students join our LEaP Project

Group photo copyOur Legal Entitlements and Problem-Solving (LEaP) Project at the University of Leeds is committed to providing practical solutions to the legal problems families face. Our lead researchers at the School of Law, Professor Luke Clements and Sorcha McCormack, have been busy recruiting students at the University to work on two new projects:

The Cerebra School Transport Research Project

Disabled children who can’t reasonably be expected to walk to school because of their special educational needs, disability or mobility problems have a statutory right to transport. Although councils are under a legal duty to provide this assistance, LEaP is often contacted by families who have been improperly refused this support. The main aim of the School Transport Project is to assess whether the school transport information on English local authority websites is fit for purpose.

The Cerebra Disabled Facilities Grants Research Project (DFG Project)

Disabled children and their families are legally entitled to a grant to pay for necessary adaptations to their home to improve accessibility and independent enjoyment of their surroundings. These are known as Disabled Facilities Grants (DFGs) and are usually for sums up to £30,000. The main aim of the DFG Project is to assess the cost effectiveness of DFGs and the wider impact adaptations have on the disabled child and their families.

The LEaP project is all about making research relevant to families in their everyday lives and the students will be publishing reports on their research in the new year.

Full details of all the legal help available from Cerebra as well as details of the research programme at the School of Law can be found here.

Mr Nigel Simpson: My Journey into Research

Nigel Simpson

Nigel Simpson

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

In this article Mr Simpson explains his journey into research.

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

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

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

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

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

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

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

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

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

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

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

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

 

University of Leeds

Leeds logoThis team is aiming to improve the prediction of mums at risk of early delivery and to prevent it from happening, so that fewer babies need neonatal intensive care and do not suffer the complications of being born too early (especially brain injury, such as cerebral palsy). Over the period of Cerebra’s funding of the Leeds team, this work has led to a fall in premature birth rates (with almost 350 fewer babies each year being born too soon).

The group is studying the ways in which the developing brain may be injured, and how to prevent it happening with medicines which could be used in pregnancy.

The group is also working with other research groups worldwide to predict other complications of pregnancy, such as pre-eclampsia (high blood pressure) and low birthweight, both of which are causes of brain injury in babies.

To read more about the research activities undertaken by the team, take a look at the lay summary below.

Download University of Leeds lay summary 2018