Epilepsy and getting a better night’s sleep

Jonah and Louise

Louise recently contacted our Sleep Service for some advice to help 9-year-old Jonah get a good night’s sleep. Jonah has recently been diagnosed with frontal lobe epilepsy and Louise told us their story.

Jonah has never been a great sleeper and not having a good night’s sleep just became a normal part of life for our family.

For a while we were trying to push him to sleep in his own room but then we starting noticing that something wasn’t quite right. He was making strange, rhythmic movements in his sleep.

We saw Jonah’s GP who told us to keep an eye on it but it steadily got worse. He would be waking up 3-5 times a night and this eventually developed into dystonic posturing – his right arm would go in the air and his leg would go stiff.

We started filming Jonah at night so that we could show the GP that his condition was worsening and of course, having so many seizures every night meant that none of us were getting much sleep. It was taking a toll on all of us and I began to feel extremely guilty about having tried to make him sleep in his own room when he’d been having seizures all along.

By February 2018, Jonah had been referred to an epilepsy specialist and we finally had enough evidence to show that Jonah was getting worse and they were able to diagnose him from this. They put Jonah on medication to help manage his seizures and he responded straight away which was great but it made him very tired in the day. This wasn’t helped by the fact that he still wasn’t settling well and he still didn’t want to be in his own room – part of me still wanted to keep an eye on him in case he had a seizure.

That’s when a friend suggested that we contact Cerebra’s Sleep Service for support. We received our sleep pack and immediately started using some of the tips that were in there.

Self-settling was the most important thing for us to get Jonah into the habit of doing because it meant that we wouldn’t have to intervene if he did wake in the night – he would just settle himself. We used the gradual withdrawal method to so that it was a gentler process for both us and Jonah and if he woke up during the night, we would just take him straight back to his room.

I first noticed an improvement about two and a half weeks in when Jonah got up in the middle of the night to use the bathroom and took himself straight back to bed. We were thrilled!

We’re now six months down the line and the change in not just Jonah but the whole family is unbelievable. I had been finding it more and more difficult to function in work because of the lack of sleep but now I’m doing much better and Jonah is also doing much better at school because he is now able to concentrate much better. We’re even moving him into his own big bedroom.

The Cerebra Sleep Service has been great because a lot of the sleep advice you usually find is for much younger children, but their advice really helped not just Jonah but the whole family finally get a good night’s sleep!

You can find out more about our Sleep Service and the support we offer here.

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.

Our innovation team design the Boccia ramp of the future

Daniel Cuthbertson and Gerallt Devonald, Paralympic champion David Smith and Welsh champion Richard Bachelor with our new boccia rampThe CIC team have been working hard to create a high tech Boccia Ramp. Boccia is a ball sport, similar to bowls, for people with severe physical disabilities.

The guys were challenged by a young man in Bristol who wanted to have more independence in the game. They took up the challenge and have created a ramp that will enable almost anyone to play, no matter the severity of their condition! Almost any ability to move any part of your body will allow you to play Boccia with a lot more independence due to the unique electronics and controlling devices the team have made.

Boccia players in the BC3 category ordinarily require an assistant to place the ball on the ramp at the required height, aim the ramp left and right according their directions and then they can launch the ball into play using a head pointer. Well now, the assistant merely has to pop the ball on the ramp, and using the super high tech controlling devices, the player can raise and lower the ball, aim left and right and shoot the ball.

Whilst not being fully integrated with the rules and regulations just yet, the team are working with the amazing Paralympic Champion, World Champion, and joint most successful UK player ever, David Smith MBE, to perfect the design and technology to ensure that the Boccia ramp of the future is a smashing hit!

Here are the design team’s Daniel Cuthbertson and Gerallt Devonald with David Smith and Richard Bachelor (Welsh Champion) who kindly gave up some of their training session to help us.

Daniel Cuthbertson and Gerallt Devonald, Paralympic champion David Smith and Welsh champion Richard Bachelor with our new boccia ramp

Do you have a project for the team at CIC? If so, get in touch on cic@cerebra.org.uk or 01792 783688.

Borrow fiction from our BorrowBox library

BorrowBox is great new service we offer that means you can now borrow ebooks and audiobooks from us. You can read or listen to books using the BorrowBox app on your smartphone or tablet or from your computer on their website. Last month we featured some non-fiction books available to borrow from our BorrowBox library. This month we’re featuring two of the fiction books you can borrow from us.

The Curious Incident of the Dog in the Night-time by Mark Haddon

Winner of:

  • Los Angeles Times Book Prize 2003
  • Commonwealth Writers’ Prize Best Book Award and Best First Book Award 2004
  • Whitbread Book of the Year Award 2003
  • Whitbread Novel Award 2003

“Christopher John Francis Boone knows all the countries of the world and their capitals and every prime number up to 7,057. He relates well to animals but has no understanding of human emotions. He cannot stand to be touched. And he detests the colour yellow.

Although gifted with a superbly logical brain, for fifteen-year-old Christopher everyday interactions and admonishments have little meaning. He lives on patterns, rules, and a diagram kept in his pocket. Then one day, a neighbour’s dog, Wellington, is killed and his carefully constructive universe is threatened. Christopher sets out to solve the murder in the style of his favourite (logical) detective, Sherlock Holmes. What follows makes for a novel that is funny, poignant and fascinating in its portrayal of a person whose curse and blessing are a mind that perceives the world entirely literally”

Borrow it as an ebook

The Wreck-It RaceThe Wreck-It Race by Sir Chris Hoy

Audiobook read by Sir Chris Hoy

“A new coach is needed – but what can a wheelchair basketball champion teach Fergus and friends about cycling?

Fergus is sure their new coach is going to be his ultimate hero, cycle champ ‘Spokes’ Sullivan, so when Grandpa introduces Charlotte Campbell, the children are all less than impressed. Charlie is the successful captain of the Paralympic wheelchair basketball team and has some interesting training methods. She gets the team doing yoga and wheelbarrow races, and enters them in the Wreck-It Run, a charity race where everyone creates their own adapted bikes from parts and must compete in pairs. Fergus is sure Charlie is off her rocker – how will this help them get faster for the International time trials?”

Borrow it as an audiobook

Find out more about BorrowBox on our library pages or email our librarian Jan at janetp@cerebra.org.uk.

Ask, Listen, Do

Do you care for a child or young person a learning disability, autism or both? Have you ever raised a concern or a complaint about the education, health and social care services they receive? And you have been left feeling frustrated by the response you received?

Then you may well be interested in NHS England’s Ask, Listen, Do project which Cerebra is now involved with. The project is aimed at supporting organisations to learn from and improve the experiences of people with a learning disability, autism or both, their families and carers when giving feedback, raising a concern or making a complaint.

The project includes the development of resources to support good practice in organisations across health, education and social care, and guidance for people, families and carers so that they feel empowered and confident to speak up.

The project listened to people’s experiences of giving feedback, raising concerns and making complaints at events all over England. They also carried out a survey which nearly 1,300 people took part in. Some of the main results from this survey were:

  • Nine out of ten people said that they had wanted to raise a concern or make a complaint at some time
  • Two out of three people said they sometimes or never knew how to do this
  • Seven out of ten people said that they did not feel that their complaint(s) had changed the way the organisation supports people as a result.

As a result of the survey Ask, Listen, Do realised that feedback, concerns and complaints systems (and safeguarding and access to justice) do not seem to work as well as they should across education, health and social care for children and adults with a learning disability, autism or both and their families.

That reflects in part their journey through many complex systems in education, health and care and the many barriers and difficulties they face. The systems and processes are also very complicated. There is also not a good enough understanding about how to listen to families or children, young people and adults, and the reasonable adjustments needed to do that. People and their families are often not included or do not feel that feedback and other systems work for them and do not take part in them.

It must also acknowledge a perception that sometimes families can be seen as difficult and challenging, which can get in the way of organisational listening and learning.

Who do they work with? They are working with national partners, including the Local Government and Social Care Ombudsman, Parliamentary and Health Services Ombudsman, Directors of Adult Social Services, Local Government Association, Care Quality Commission, Department for Education and others, along with families and people themselves. The idea is to work together to help all organisations make it easier for people and their families, children and adults, to give feedback, raise a concern and make a complaint and to know that it will make a difference through the Ask, Listen, Do approach, set out below:

and through the Ask Listen Do principles, set out below:

Ask, Listen, Do are seeking to influence and change organisational behaviours and approaches through the Ask., Listen, Do approach and the help of families, carers and national partners in education, health and social care.

One example already achieved is that NHS Improvement will include Ask, Listen, Do in their new learning disability standards which is to be issued soon. Another example is that the Department for Education commissioned Whole School SEND to work with families and NHS England to coproduce a guide to help make conversations about their children and young people count for all families in all schools. This can be found here.

They have also produced a Top Tips leaflet for families to help empower them in understanding and dealing with these complex systems, and training and other resources to support organisations.

The project is now launching on social media at #AskListenDo and you can find out more about Ask Listen Do on their website.

Overcoming sleep terrors

In this article we take a look at what sleep terrors are, give advice on how to overcome them and explain how our Sleep Service helped Rachel and her mum.

Like any other ten year old, Rachel was desperate to have a sleep over at her friend’s house. However, Rachel has autism and the anxiety she experiences meant that she felt unable to sleep without her mum in the bed with her. She had never managed a full night in bed by herself.

Her mum, Helen, was also concerned about Rachel’s screaming episodes during the night when Rachel would run around the house, appearing terrified and screaming, but unaware of her surroundings. Her GP explained to Helen that these were sleep terrors (sometimes called night terrors) and were likely to be just a stage that Rachel was going through.

Rachel’s sleep terrors sometimes happened twice during the night and Helen was worried about Rachel’s quality of sleep as well as the disruption caused to the whole family. Needing advice and support Helen contacted Cerebra’s Sleep Service.

One of our Sleep Practitioners, Pattie, gave Helen some information and advice on sleep terrors.

If your child is experiencing sleep terrors, it is important to seek medical advice to confirm the diagnosis and to rule out any other causes for the behaviour.

What are sleep terrors?

Sleep terrors are episodes that can that occur when a person is in a deep stage of sleep – usually within the first few hours of going to sleep. NHS guidance says that they most commonly occur between the ages of 3 and 8, but that a child’s developmental age may also need to be taken into account. When experiencing a night terror a child may:

  • Appear frightened
  • Scream
  • Cry
  • Thrash around
  • Appear confused
  • Not respond to the parent / carer or push them away

It’s important to be aware that although the child may seem agitated, they are likely to be unaware of this event and probably won’t have any memory of it in the morning. It’s more distressing for the person who witnesses it. Episodes usually last less than 15 minutes but in younger children, or in those with developmental delay, they may last quite a bit longer.

Some things that may make sleep terrors worse:

  • Changes in sleep patterns
  • Infections/ fever
  • Anxiety/ stress
  • Inadequate sleep
  • Medications that causes certain changes in sleep
  • Caffeine
  • Sleeping with a full bladder
  • Noise and light
  • Sleeping in a different environment
  • Sleep-disordered breathing
  • They may occur more frequently in certain conditions, for example Tourette Syndrome
  • Family history of night terrors or sleepwalking

Suggestions which can help you to manage sleep terrors:

  • Keep bed and wake times consistent
  •  Sleep deprivation can make it worse, so ensure that other sleep problems are managed where possible
  •  Ensure your child is in a safe environment
  •  Inform other caregivers e.g. if your child attends respite or sleepovers etc
  •  Avoid stimulants e.g. caffeine
  •  Avoid waking your child up during an episode as this can prolong a night terror or cause agitation
    If your child leaves the bed then gently guide them back to bed
  • Avoid comforting or other interference as this can also prolong the episode
  • Avoid discussing it with your child the next day as this may cause anxiety, and possibly more disturbed sleep
  • If the episodes happen at a predicated time each night, you could try scheduled waking. This is where you wake the child up 15 minutes before the episode occurs for a few nights (or more in some cases) and then let them go back to sleep and this can often break the cycle.

How did Helen and Rachel get on?

Since Rachel and her mum were also keen for Rachel to be more independent at night-time, Pattie also advised them on how to implement gradual withdrawal. This is a method which involves gradually increasing the distance between parent and child over a period of time. In this case, Helen used a camp bed and set this up in Rachel’s room. Every few days Helen moved this gradually a bit further away from Rachel’s bed until she was out of the room.

She also worked hard to ensure Rachel was calm at bedtime with a relaxing routine as well as keeping the wake times consistent each day (including weekends). You might find some tips in our Anxiety Guide useful.

After two months, Rachel’s sleep terrors had reduced considerably, and Helen got in touch to say how pleased she was that Rachel had managed to sleep over at her friend’s house for the night. Rachel also called Pattie first thing the following morning, as she had been so happy that she had managed to do it!

If you’d like some advice on managing sleep terrors, or other sleep issues, don’t hesitate to get in touch with us.