Partnership pioneers better support services

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

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

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

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

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

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

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

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

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

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

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

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

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

Find out more about this role here. 

For further information about KTPs contact the Cardiff KTP team: [email protected]

Sleep – tips and techniques

We are launching a new resource to help families who have a child with a brain condition to get a good night’s sleep. Sleep – tips and techniques for families who have a child with a brain condition explains techniques to help with the ten most common sleep problems including refusing to go to bed; not wanting to sleep alone, waking up during the night, waking up early.

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

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

Our Sleep Service helps families to get a better night’s sleep through one-to-one support, sleep workshops and sleep information resources.

The new booklet, Sleep – tips and techniques introduces and explains several different techniques that may help a child’s sleep and gives lots of illustrated hints and tips for putting them into practice. It includes 10 topics:

  • Bedtime routine
  • Calming time before sleep
  • A good sleep environment
  • Positive sleep associations
  • Using a comforting object
  • Gradual withdrawal from the bedroom
  • Moving bedtime backwards
  • Moving bedtime forwards
  • Creating a rewards system
  • Reducing daytime naps

Download booklet (PDF)

The information in the booklet is based on research at the Cerebra Centre for Neurodevelopmental Disorders at the University of Birmingham. Through the Sleep Project they are leading cutting edge research to understand the different types and causes of sleep problems in children with neurodevelopmental disorders, identifying how poor sleep impacts on children and their families and trialling new interventions to reduce sleep problems more effectively.

The Sleep Tips guide can be downloaded free of charge. You can also access one-to-one support, find out about sleep workshops as well as download our comprehensive Sleep Guide.

We’ve planned a week of activity on social media around the launch of the new Sleep Tips booklet. Cerebra Sleep Week runs from 17th – 23rd September and will include lots of advice and support for families who may be struggling with lack of sleep. #Cerebrasleepweek.

Understanding and reducing sleep disorders in children with development delay

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

Why is the Sleep Project important for families?

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

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

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

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

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

Projects:

We have completed five core components to date:

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

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

Public Knowledge:

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

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

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

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

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

Investing in People

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

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

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

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

Difficulty settling at night

A young girl lying in bed awakeOne of our Sleep Practitioners recently helped a family who were struggling to get their daughter to bed, and to sleep.

Sleep Practitioner Laura explained: “Charlotte is ten years old and has ASD. Her main issues were settling at bedtime and sleeping alone. She was taken to bed at 9:30 but this could cause huge issues and arguments, or endless delaying tactics and bedtime was stressful overall stressful.

We agreed to focus initially on introducing a calming bedtime routine and suggested implementing a temporary later bedtime. Mum began taking her to bed at the time she was naturally falling asleep with the aim of very gradually moving this backwards by 15 minutes.

This, in combination with a calming bedtime routine (we chose a massage, red light and filtered glasses to watch TV with) meant Charlotte was going to bed in a much better mood, and falling asleep without any arguments or delaying tactics.

Charlotte’s mum Judith explains how they got on:

“I found Cerebra’s Sleep Service invaluable as the advice given was tailored specifically for Charlotte’s needs, taking into account her preferences. Prior to using your service, I felt that I had explored all options and nothing worked. She was very anxious and confrontational at night and would avoid going to bed at all costs.  However, with your suggestion of removing the stressors (wash, teeth etc) outside of the one hour prior to bed and using visual cues, she is much calmer. I have a board upstairs detailing what she needs to do to the point of going to bed and the time she needs to be in her own bed.

I was concerned as she loves to watch a DVD prior to bed and I was aware that blue light was an issue with sleep. However, you reassured me that if this was what worked for her, we could work around that. On your suggestion, I purchased red filtered glasses and she wears these with pride. I also purchased red night-lights as the ones I was using had a blue light.

When you examined her sleep pattern, it was established that a natural time for her to fall asleep was 10.30pm -11.00pm, so you recommended she wind down for one hour prior to 10.45 and then watch her DVD with her filtered glasses on. We did this for a month then successfully reduced bedtime by 15 minutes for a further month. I have just reduced this again by 15 minutes and she is accepting this without question, going to bed without arguing and not delaying going to sleep by trying to play games. She is waking up in a better mood and this is helping with her self care routine.

You also suggested as she was experiencing pain in her legs that this could impact on her sleep. The GP/nurse had always put this down to growing pains. However, you gave me the confidence to question this and my podiatrist diagnosed her with hypermobility which is now being treated with physio and she has orthotics fitted. She also has daily massages. This is reducing the pain.

Once she is taken to bed, I still need to stay with her until she is asleep. In general, she falls asleep within 20-25 minutes and I am then able to leave her. Once I have a bedtime routine in place where she goes to bed at 10pm, I will work on supporting her to self soothe so she can fall asleep unaided. You kindly offered to support me at that time as this is a stressor for her and causes anxiety, as she is afraid of being alone.

I am very grateful of your help as your suggestions were not ‘the norm’ offered by other professionals I have worked with who do tend to focus on ‘bath, book, bed’, which just didn’t work for us. Charlotte’s overall well-being has improved significantly because of your help and we have a much calmer, happier household. Without your support, I am confident that my daughter’s sleep habits would not have improved. Thank you”.

Download our great new sleep booklet for more tips and techniques to get a good night’s sleep.

Object of comfort helps Poppy sleep

Poppy, Simon, Bella, Gigi and Rachel

Poppy, Simon, Bella, Gigi and Rachel

Mum Rachel contacted our Sleep Service to get some advice about daughter Poppy who was having a number of sleep issues. She told us their story and how Sleep Practitioner Kaileigh was able to help the whole family settle into a better routine.

Poppy is 10 years old and has a condition called Fragile X Syndrome. This affects her in many ways in her daily life. She has a learning disability which means that she can’t read or write and has low muscle tone. She also has autistic like behaviour which means that she likes routine. She’s also asthmatic. This can all have a big impact on the way she sleeps.

Before her mum contacted our Sleep Service, Poppy would only settle to sleep if one of her parents were there and would always wake up early – around 4.30am. This would cause problems for the whole family as Poppy also shared a room with her sister Gigi.

Poppy’s asthma also often caused her to be sick in the night when she was younger and so her parents felt as though they needed to be near through the night and this had an impact on their sleep.

One of our Sleep Practitioners, Kaileigh, suggested a number of techniques for mum to try to improve the quality of Poppy’s sleep including using a comforting object. For Poppy, this meant introducing cuddly toys which she grew an attachment to and found comforting. She named her four teddies after people she cares about and having these through the night means that she has a reminder of her parents and can now settle herself without having to wake her parents.

Another positive change that the family has made is reducing screen time before bed. The light that our electronic devices gives off can disrupt our natural sleep cycles so reducing screen time and using a red light (red light doesn’t disrupt out sleep cycles in the same way as other light) in Poppy’s bedroom improved her sleep. She is now even able to sleep with only the landing light on – something she would never have been able to do before.

Poppy is now sleeping much better and she and her sister even have their own rooms now so they can be typical girls. Poppy has chosen a unicorn theme for her room!

Mum Rachel said: “thank you for all the help we have received from Cerebra. We haven’t entirely cracked the sleep issue yet but we feel encouraged with your help!”

Read more about using a comforting object and other techniques for getting a good night’s sleep in our new sleep tips booklet.

What impact do sleep problems have?

Although the odd night of poor sleep may not affect daily abilities, persistent sleep problems can have a huge impact on individuals with and without intellectual disability and their friends, families, colleagues and carers. For all individuals, lack of sleep is associated with problems with mood, learning, memory and behaviour.

This article is taken from our Sleep Guide which you can download for free on our website.

Learning

Importantly, poor sleep affects motivation and concentration, which means that individuals who are experiencing sleep problems may make more errors at school/work, particularly on repetitive tasks. This means that if your child is struggling on ‘easier’ tasks at school (which are often repeated until they are ready to move on to harder tasks) it is worth speaking to their teacher, who may be under the impression that they are struggling because of their intellectual disability, rather than the sleep issues.

Sleep is also vital to a process called memory consolidation, where memories from the day (e.g. memory of that is learned at school) are strengthened. If sleep is disrupted these memories may not be stored properly, making it harder for children to use what they have already learned during the next day at school.

Challenging behaviour

Poor sleep may also reduce an individual’s ability to cope with changes in their routine. You may notice that your child shows more challenging behaviour (for example, self-injury, aggression, destruction) when they have not slept well the night before. This is common in children with intellectual disability and also in children and adults of typical development! We are all more irritable when we have not slept well and are therefore more likely to show behaviours which indicate that we would like certain tasks to end or situations to change.

Since individuals with intellectual disability may have limited ways to communicate their feelings and preferences, challenging behaviour can be a very effective way of indicating needs or desires (for example for a task to be taken away). It is natural for parents/carers/teachers to want to respond quickly to the challenging behaviour, which means that it is more likely to occur again the next time they want a task to be removed. For more information on mutual reinforcement of challenging behaviour, see “Parent response to waking” on page 10 of our Sleep Guide, and also our factsheet on Managing Challenging Behaviour.

Parents of children with intellectual disability therefore have a lot to do: comforting children with sleeping problems, acting as an advocate for their child’s learning and health, and managing challenging behaviour. Often parents and family members experience a loss of sleep themselves, which can make managing these aspects of parenting more difficult and may even contribute to low mood and impaired concentration.

It may feel as though your child’s sleep problem is out of your control or that you do not have he time/resources to invest in fixing it. However, after thorough assessment, there are some simple intervention strategies available in Part Three of the guide which can help to improve sleep.

You can download our Sleep Guide and our new tips and techniques booklet free of charge from our website. If you’d like some individual advice on tackling your child’s sleep issues please get in touch with our Sleep Team.

My child just won’t go to sleep

Small girl waking her parents early in the morning.This article takes a look at what you can do if your child just won’t go to sleep. It’s taken from our Sleep Guide which is available to download for free.

What should I do when my child just will not go to sleep?

Often settling problems can be caused by a lack of bedtime routine or perhaps the bedroom being associated with activities other than sleep. However, even after establishing a calming bedtime routine, it may be that your child does not want to go to sleep and cries out to you. This may be distressing for you as a parent to hear and your natural reaction may be to go back into your child’s bedroom.

As described in Part One of the Sleep Guide, this may be contributing to the problem, and so the next step for intervention would be to stop reinforcing the settling problem. This may require ‘ignoring’ your child’s cries, which is known as extinction. However, this can be very difficult for parents and children, so graduated extinction is recommended.

Agree a set amount of time (e.g. 2 minutes) that you will allow your child to cry for, before briefly checking on them.

  1. When your child has been crying for the 2 minutes, go in and check them. This checking should only be to reassure yourself that the child is alright and to tell them to go back to bed. When you check on them, do not offer physical interaction, music, or any other aspect of the bedtime routine.
  2. Leave the room and wait the agreed time before repeating the checking procedure.
  3. You may have to repeat this many times before your child eventually falls asleep, so it’s a good idea to start on Friday night or another evening where no one has school or work the next day.
  4. The next night, gradually increase the amount of time you allow before checking on your child (e.g. from 2 minutes to 4 minutes), and continue to keep the checking procedure brief.
  5. Repeat this until the child’s crying at settling reduces.

If the suggested times here are too long, try just waiting for one minute before checking and then gradually increase the time by 30 seconds each night. Eventually your child will learn to settle themselves to sleep without you there

If you’d like some individual advice on introducing this technique please get in touch with our Sleep Team. 

Cara smashes duathlon challenge

Cara Readle

Cara Readle

One of our Ambassadors, Cara Readle, recently completed a duathlon and raised over £500 for Cerebra!

This was a particular challenge for Cara as she was born with Cerebral Palsy, but she has never let anything stand in her way!

Cara’s duathlon saw her embarking on a 5km walk on a treadmill and a 5km cycle on a static bike. Initially the challenge was set to take place over the course of a day at Xcercise4less gym in Swansea but Cara did a fantastic job and managed to complete the entire challenge in just a couple of hours!

Cara said: “I set out to do something that I knew I would find very challenging but I wanted to challenge myself in order to raise money for Cerebra.”

To date, Cara has raised over £500 and you can still donate through her Just Giving Page.

If you feel inspired and would like one of our fab new fundraising packs just get in touch with us on [email protected]

Watch Cara reach the 4K mark on the treadmill:

Innovation Centre’s spinning pod a big hit with Curtis

Curtis and his spinning pod

Curtis and his spinning pod

Louise recently contacted our Innovation Centre after seeing a post on our Facebook page about the spinning pod chairs that the team had created. She knew one would be perfect for her son, 11 year old Curtis who has Charge Syndrome. She told us their story.

Curtis has Charge Syndrome which affects him in lots of different ways. It affects his development, meaning that he can’t walk and talk and he also has many sensory issues. He is partially sighted and has a cochlea implant because he is partially deaf. He is unable to tell where his body is in space and because of this, he has balance issues.

Longer term, Curtis has heart and lung problems and is on long term ventilation after needing a tracheotomy. He has night carers who have been a big help as Curtis isn’t a good sleeper, although he goes through patterns with his sleep and it has been helped with medication.

Curtis craves constant sensory input which means that he often gets frustrated and can lash out. His 4 year old brother Oscar is great with Curtis but it can be difficult for him, especially if Curtis is having a bad day.

Oscar enjoyed the box

Oscar enjoyed the box

For a while now, I have been looking for something to help Curtis to feel more grounded. We had a very old spinning chair that Curtis would spin on all day if he could because he doesn’t get dizzy but as he was getting older, the chair was getting less safe for him to use and I was worried it would break. Then I saw pictures of the spinning pod chair that the Cerebra Innovation Centre had created on Facebook and knew it would be perfect for Curtis!

I contacted the team and the day the chair arrived, Curtis was absolutely over the moon with it! Oscar even loved the box that it came in! The pod now makes up an important part of Curtis’ day. He can touch the floor and spin himself which gives him some independence and it also grounds him so the benefits have been huge.

The Innovation Centre have been great. A lot of things are designed for younger children and often there’s not a lot available for older children but they helped to fill in the gaps. There are so many challenges we face and it’s nice to know there’s someone there to help.

You can find out more information about the Cerebra Innovation Centre on our website. If you would like to find out how you can get a spinning pod like Curtis’s, contact the team at [email protected].

Engage to Change

Kyle Davies

We’re delighted to welcome Kyle Davies to our team following his Engage to Change placement with us.

We were very keen to become involved in the Engage to Change scheme which is currently running across the whole of Wales to support young people aged 16-25 with a learning disability and/or autism into paid work placements lasting 6-12 months.

Kyle Davies from Burry Port began a six month placement with us in February this year. Elaine Collins, our PR & Marketing Manager and Kyle’s placement supervisor, explained “the process of setting up a placement was really straightforward – the staff at Engage to Change were great to work with and really took great care to match up the role we were offering with the right person. The ongoing support they have offered Kyle and myself has been fantastic”.

During his placement Kyle has worked with our marketing and fundraising teams, helping to produce newsletters and articles for the website, carrying out events research and working on the summer raffle scheme. Kyle settled in so well and made such a contribution that we were delighted to be able to offer him a paid role at the end of his placement.

Owen Williams, Kyle’s job coach from Engage to Change said “from day one Cerebra have been extremely positive and supportive towards Engage to Change and were keen to offer an employment opportunity to one of our clients. After a careful job matching process Kyle was placed with Cerebra as an Admin Assistant and has received an excellent level of mentoring, support and guidance from Elaine and other staff at Cerebra, which has enabled him to significantly increase his self-confidence and communication skills and become a valued member of the team. After completing a successful 6 month paid work placement Kyle has now been offered paid employment at Cerebra which he was very happy about! I would just like to thank Cerebra for the ongoing support and commitment to both Kyle and the Engage to Change Project as a whole”

Elaine said “Kyle hasn’t looked back since he joined us and we’ve seen his confidence increase every week. He’s very much part of the team and we’re delighted that he’s staying on with us”.

It’s been a great experience for Kyle too. He told us:

“I’ve really enjoyed working at Cerebra over the 6 months of my placement. It’s been an amazing experience working on projects for the different departments. Everyone from Cerebra and my job coaches Owen and Steve from Engage to Change have been very nice and always able to help if I had any questions. As my placement came to an end I was ecstatic to be given the news that I would be kept on as a part time member of staff. Thank you for the opportunity and I am eager to make a positive contribution to the charity”.

The experience has been such a positive one for us that we have offered a second placement under the scheme.

The Engage to Change project aims to help over 1000 young people achieve their full potential by supporting them to gain experience in the workplace and develop transferable skills through a person-centred approach. To do this they are working with 800 employers over five years, offering one-to-one job coaching and specialist employment support to both young person and employer. This project is made possible through funding from the Big Lottery Fund in partnership with Welsh Government.