Author Archives: Sarah Jones

Building a better bed time routine

Avleen

Recently we were contacted by Hardeep, whose daughter Avleen was not sleeping at all. This was having a huge impact on the whole family. Claire from our Sleep Service offered the family some guidance and now, just a few months later, Hardeep tells us about their journey.

My daughter Avleen was born prematurely at 28 weeks but is now five years-old. She was diagnosed with Autism in 2018 and this often causes sensory issues which can lead to meltdowns.

She had disturbed sleep until she was 3 years-old and then things started to get much worse. She wouldn’t nap at all through the day and even though she was exhausted, she would wake up through the night – sometimes hourly.

It inevitably started to affect her school work because she was so tired during the day that she couldn’t concentrate and would act out.

Things came to a head when I was pregnant and had my second child. Avleen was waking up through the night and wasn’t able to settle herself. Once her sister Harneez was born, the crying of the baby in the night would also affect Avleen. It was taking a huge toll on the whole family.

We saw a paediatrician who suggested that we try melatonin but I was hesitant to try this as a first step. They also suggested that we get in touch with the sleep team at Cerebra for some advice and support.

We were put in touch with Claire who listened to what was going on and asked lots of questions to help her to understand our situation. We worked together to put a plan in place to improve Avleen’s sleep.

Claire suggested that we avoid giving Avleen a bottle before bed but rather give her a small snack if she was hungry. We were also advised to switch screens off at 7 to allow her to start winding down before sleep.

We started to give her a bath as part of her evening routine and this allowed Avleen to start to recognise for herself when it was nearly bed time.

Claire was in frequent contact during this time and for every issue that we had surrounding sleep, she was looking for a reason why it would be happening so that we could adjust Avleen’s routine accordingly.

After completing every step of the routine, we were finally able to bring Avleen’s bedtime forward to 9pm. She started to go to bed much more relaxed and as a result, was finally able to sleep through the night without any episodes of waking.

Once her sleep started to improve we even realised that part of the problem previously had been that she had been extremely restless in her sleep and her hair was getting tangled. This was causing her sensory issues and was leading to meltdowns.

Before we worked with Claire, Avleen was anxious about everything, especially at night. Now her behaviour is much better because she is much more well rested. She even recognises when it is time to go to bed and asks to go to bed herself – something that would have never happened before.

The only time that she wakes during the night now is if she has a cold or is suffering with hay fever. This obviously disturbs her sleep but is understandable.

She will sleep for 10 hours now which is amazing and it has had a hugely positive effect on her behaviour.

She is now able to concentrate much more at school and we have noticed that her asthma is much more under control.

It’s not just had a positive effect on Avleen but has also made things better for the entire family. I have gained so much confidence with the help of Claire and now I know that I’m not going to have any issues getting her to sleep. We’re all far more rested and this has meant that we are able to cope with everyday life much more easily.

If you would like to find out more about our Sleep Service, including how you can get help from one of our Sleep Practitioners, check out our website.

Direct payments don’t work for everyone

Direct payments

Our Legal Entitlements and Problem-Solving (LEAP) Project has just published a report studying the experience of families with disabled children and Direct Payments[1].

The research consisted of two parts:

  • We developed and circulated a Survey Monkey questionnaire in early 2018. It asked families about payment rates for personal assistants (PAs) [2] as well as their experiences of using Direct Payments. The survey attracted a total of 256 responses.
  • Students at Leeds University, under the supervision of Professor Luke Clements, carried out a survey of English local authority hourly rates for Direct Payments. Freedom of Information requests were made to 60 social services departments resulting in 49 usable responses.

A number of respondents clearly found Direct Payments to be a very positive experience. One stating:

DP is a lifeline I don’t know how we would have managed without it in the past 10 years. It is flexible & most definitely the way forward. I would recommend it 100% [as] it gives not only us a break but my daughter time away from us. It also allows us time with other family members without having to deal with our daughters complex needs an extremely vital resource. Long may it continue.

However, a majority reported significant problems with receiving Direct Payments. Some using the phrase ‘complete nightmare’ to summarise the difficulties they had encountered and others spoke of having to ‘fight’ and ‘battle’ to get enough help. One respondent reported:

At the moment it would seem the whole system is collapsing from health, education and social services. I just keep getting told there is nothing else they can offer me, and there are no funds to help us. The social services won’t even let me have a carer’s assessment or child in need assessment. [The] services are a disgrace at the moment.

Respondents to the family survey reported an average hourly Direct Payment rate of £8.90 gross while the local authority survey gave a higher average figure of £10.57 gross.

The report highlights the following key points:

  1. The survey reveals deep levels of dissatisfaction with the way that Direct Payment arrangements are been administered by local authorities.
  2. Rates of pay for Personal Assistants (PAs) were very low, typically at minimum wage rates. It appears that in consequence that in many local authority areas there is a serious ‘market failure’ – such that authorities are arguably in breach of their statutory and public law obligations to families with disabled children.
  3. Getting an assessment of needs was often said to be a matter of chance, with some families learning about services through word of mouth and some reporting a wait of as long as two years to get an assessment.
  4. Many respondents commented that Direct Payment rates were too low to employ suitable PAs despite their local authority being willing to pay much higher rates for agency staff.
  5. The difficulty of finding suitable staff who were prepared to work for the rates imposed by local authorities was a major and reoccurring theme of the survey as was fear by respondents of losing the Direct Payments if they were not able to find such staff.
  6. The complexity of some children’s support requirements, in conjunction with poor conditions of employment, meant that many families reported finding it impossible to recruit PAs. In conjunction with increased restrictions on the permitted use of money, this could result in money being unspent.
  7. Money that remained unspent was usually reclaimed by local authorities after periods of time that ranged from two weeks to two years, leaving families without any support. There was only one report (from 256 replies) of pay rates being increased in order to promote recruitment of a PA.
  8. There was a lack of knowledge (amongst families) as to how Direct Payments were calculated and indeed what the actual rate was in individual cases.
  9. There are considerable shortcomings in realising the original intentions behind Direct Payments. Strict rationing of resources is resulting in families experiencing stress, an acute lack of support and prolonged ‘battles’ to secure basic services that they are entitled to by law.

The report finds that ‘the research discloses deep levels of dissatisfaction with the way that Direct Payment arrangements are administered by local authorities’.

The whole report can be seen here by clicking on ‘Direct Payment Research’ .


[1] Direct Payments are moneys given directly to parents (in this case) by their local authority so that they can buy services themselves for their disabled child rather than having them arranged by the local authority.

[2] Personal Assistants are employed by families to provide services to their children (e.g. take them to community activities) and are paid using the Direct Payments they receive.

Handy tips for summer holiday sleep

older boy asleep

During the summer holidays the change in routine and light, warmer nights can often make sleep difficult. It can be even harder for children who don’t sleep well anyway. Our sleep team give their top tips for getting a good night’s sleep this summer.

  • Keep the bedroom as dark as possible at bedtime. Well-fitted blackout blinds can be useful. This allows our natural melatonin to be produced.
  • In hot weather, during the day keep windows shut and curtains closed to keep rooms cooler. Open the window in the evening if you like, when there may be a little breeze.
  • Look at using cooling pads/cooling pillows if their room is very warm.
  • Avoid caffeine (e.g. Coffee, some fizzy drinks, chocolate etc) in the 6 hours before bedtime.
  • Try and keep bed and wake times consistent, eating at similar times also helps with our internal body clock.
  • Avoid exercise in the hours before bed – this raises our body temperature, which can make it harder to fall asleep.
  • Using visual resources can help with changes to routine (visual timetables, social stories, checklists etc).
  • Use a fan to help keep bedrooms cool – the white noise it produces can also be quite calming.
  • Spend an hour before bed engaging in calming/relaxing activities (if you are away take some with you).
  • If bedtime during holidays is significantly later than during school, spend the last week of the holidays slowly bringing this earlier by 15 minutes a night. This is much easier on our body clock than a big change in one night.
  • Run cold water over wrists and feet before bed to help keep cool, or have a bath before bed as this helps to cool the body. Try to avoid very cold showers as these can be stimulating.
  • Play calming music/white noise at bedtime and throughout the night to drown out the noise of others playing outside.

You can find more information in our sleep resources. If you would like to find out more about our Sleep Service and how you can get more help and advice with your child’s sleep, please visit our website.

Carmarthen Mayor opens our new offices

Chris Jones, the Mayor of Carmarthen, George and Alfie at the new offices

Carmarthen Mayor Cllr Jeff Thomas visited on 24th July to open the charity’s new offices and draw the winning tickets in the Summer Raffle Draw.

Founded in 2001 and covering the whole of the UK, Cerebra has maintained its headquarters in Carmarthen. Cerebra moved to its new premises at the MacGregor Office Suite last month.

The event was a chance to celebrate the charity’s new headquarters as well as to hold their annual Summer Raffle Draw. The lucky prize winning tickets were drawn by Councillor Thomas.

Guests included local businesses, supporters of the charity and colleagues as well as some of the families that the charity support.

Chris Jones, CEO of Cerebra said: “We are excited to announce the opening of our new offices which marks an exciting new time for Cerebra. The new offices are also significantly cheaper to lease, saving the charity a substantial amount of money in rent and running costs”.

Cerebra is a charity that supports children with brain conditions and their families. Families where a child has a brain condition face challenges every day. Just to learn, play, make friends, enjoy and experience the world can feel difficult, even impossible. But Cerebra believes there is no challenge that can’t be overcome.

Our Innovation Centre help Harry to throw a ball for his dog

Harry and Addi

A team of Product Designers from the Cerebra Innovation Centre – a partnership between the University of Wales Trinity Saint David and Cerebra – has produced a specially adapted tennis ball shooter to enable a boy with cerebral palsy to throw a ball for his assistance dog.

Cerebra Innovation Centre, with help from ATiC – the University’s integrated research centre – developed the tennis ball shooter for Harry Flynn, 11, to help him bond with his dog Addi.

Eleven-year-old Harry has Athetoid Cerebral Palsy, which sadly means he has poor gross motor skills and is reliant on his wheelchair just to get around. Harry faces difficult challenges everyday but he’s able to live a happy life. He’s a budding musician and enjoys going to the cinema but when someone special came into his life two years ago, Harry soon had a new love. That someone was Addi, Harry’s assistance dog and best friend!

Addi, who came from the charity Dogs for Good, has been with Harry for two years. “He helps Harry by doing things like opening doors, opening drawers, turning light switches on and helping to remove socks and coats,” said Harry’s mum Hilary. “Most importantly he’s a constant friend and he encourages him to go outside, which, prior to having Addi, he never liked doing.

Addi’s a remarkable dog and a big part of Harry’s life. When he isn’t assisting, it’s important for Addi to have play time and they both love being outside together. Each time they were out on walks though, there was just something missing and Harry’s parents tried but couldn’t find the answer.

Harry and Addi

Harry’s mum, Hilary told us, “Harry so wanted to play fetch with Addi, who just loves to run after a ball. Sadly, though, Harry doesn’t have the strength or coordination to be able to throw. He loved being outside with Addi but you could see the disappointment on his face each time we went for a walk. I was so pleased, though, when I came across Cerebra and their wonderful Innovation Centre.”

The Cerebra Innovation Centre is home to a team of product designers and is based within UWTSD’s Swansea College of Art. The teams designs and builds innovative, bespoke products to help disabled children to discover the world around them. The products the team designs are desirable and exciting as well as functional, promoting social inclusion and peer acceptance for the children they help.

The team took a Nerf tennis shooter as their starting point and adapted it with 3D printed parts. Dr Ross Head of Cerebra Innovation Centre said he was pleased the team could create a piece of equipment that enabled Harry to reward Addi for his hard work.

“All Harry wants to be able to do is reciprocate and the only way he can do that is to throw a ball for his dog – but he doesn’t have the strength,” he said. “We were able to work with ATiC to get some really cool 3D printing done and create pieces that mean Harry doesn’t need dexterity to be able to pull a trigger.”

The team designed a bracket that could support the launcher and sit nicely on Harry’s wheelchair frame – not only that but the launcher’s firing mechanism had to be altered, so that all Harry had to do was lightly press it to release the ball.

Once the bracket was in place there was just one more surprise in store… putting Harry at the controls! While he could fire the launcher with no problem, Harry had to move his wheelchair each time he wanted to aim. The wheelchair had joystick controls so the team also added joystick controls to the launcher. Harry is now able to enjoy play time with Addi, repaying him for the assistance he gives on a daily basis. “He’s been a real help in my life,” said Harry.

The Innovation Centre is part of Cerebra, a charity supporting families who have a child with a brain condition, worked with ATiC, an integrated research centre at the university, to design and 3D print parts that make it possible for Harry to fire the shooter, and a joystick that enables him to point and aim the shooter.

Watch Harry and Addi in action:

SEND funding in England: the Government needs your views!

Last week the Department for Education (DfE) in England made a call for evidence about SEND funding. As many of you will know and have experienced, the SEN system in England was significantly reformed in 2014 with the introduction of the Children and Families Act but that wasn’t the only change to have a big impact on children and young people with SEND.

Eighteen months or so prior to that the government made significant changes to the way SEND was to be funded at the local level. The combination of the these two major reforms has had led to numerous accounts of serious issues for children with SEND with almost daily news stories of exclusions, head teachers saying they have no money for SEND and parents taking local authorities, and even the government, to court for matters relating to funding.

The consultation is open until 31 July and the online response form can be found here.

The DfE have also asked the Council for Disabled Children to organise a small number of workshops across the country, so that they can discuss the themes in the call for evidence in greater detail. If you would like to attend one of these events, you can register your interest at [email protected], giving your name, role, organisation and email address. They will send you information about the events as soon as it is available.

Bizarrely, the call for evidence doesn’t include special school funding or school/college transport. Families are telling us that problems with the latter continue to be a serious issue for some parents meaning that sometimes they have to reduce the hours that they work or even consider giving up work all together. In many cases, getting a child/young person with SEND to school or college and providing a meaningful educational and social experience needs all the pieces of the SEND funding jigsaw to work together: it would be great if the DfE could focus on all of the pieces and not just some of them.

New Switch toys in our Library

We have some exciting new switch toys in the library.  Switches are accessible for all abilities, making them perfect for your child to explore cause and effect.  Whether your child responds to lights, music or movement they are going to love the new switch toys.

We have been able to introduce these additions to our switch toy collection thanks to the kind generosity of donations from trusts such as The Rothley Trust and the Green Hall Foundation.

We have also been able to replace some of the older toys and the all new Picture Wheel Projectors can also be operated with a switch.

Switch Adapted Spinning Gem Sphere

Gen sphere

A switch operated toy with coloured lights that rotates.  Press the switch to spin the sphere and watch the lights.  Also great in the dark.
Mains electric
Quantity: 2

Switch Adapted Dancing BeatBo

Beat bo

Dance and Move BeatBo is a great playtime pal for singing, dancing, moving and grooving!  Use up to 3 switches to activate his three modes ‘Dance and Move’ ‘Learning and Games’ and ‘SingAlong’.  BeatBo features a ‘light up’ tummy panel of changing colours.  Three detachable switches included.
Battery operated
Quantity: 2

Picture Wheel Projector

Picture Projector

This LED projector is energy efficient and cool running.  It comes with 3 picture wheels.  The rotator can be stopped and reversed for different effects.  Can also be used with the picture wheel for shadow work. It can also be operated with a switch.  A switch is included.
Mains electric
Quantity: 2

You can find more information about our library including how you can join and start borrowing books and sensory toys here.

CIC develop new sensory fish tank

CIC have developed a great new sensory fish tank. Fish are  great addition to a sensory experience, but are susceptible to the glass being banged and objects (mum’s car keys, TV remotes etc) being submerged!

This new tank from CIC comprises a stunning and tough external case which separates the fish from mischievous fingers. Additionally this tank can be secured to the table or side unit so that it can’t be tipped over. The tough lid is lockable to prevent experimental over feeding.

If you are interested in finding out how you can give a home to one of our fish tanks, please give the team a call to discuss your requirements! You can call them on 01792 483688 or email [email protected]. We look forward to hearing from you.

The long-term effects of unreliable, inconsistent support in CAMHS

Mair Elliott writes about how unreliable and inconsistent support from CAMHS has had an impact on her. You can read more of Mair’s posts in her blog. We’d like to hear about your experiences of delays or inconsistent support from CAMHS.

“When we discuss the high staff turnover, lack of reliable support, and other issues within CAMHS services we often think about the immediate distress that is caused to the young person in need of care and treatment. However, the ongoing effects can be just as distressing.

My experience of CAMHS, as with many other’s experiences, was of unreliability, numerous staff changes, lack of communication, and stop-start therapy. I’d invest my trust in a therapist only to have it broken when they departed at short notice. This happened over and over again. It was this continual loop of breaking my trust which has left me with some pretty serious insecurities.

Over the past couple of months, my therapist, whom I have been seeing for over a year, has had to take significant leave for various reasons outside both our control. Unexpectedly, it has triggered some deep insecurities within me. Yesterday she informed me that she’d have to take time off and I wouldn’t be able to see her for another 3 weeks. I am feeling incredibly vulnerable and upset over this. I don’t trust that she will come back, I don’t trust that I won’t be left stranded without support, I don’t trust that my trust will not be broken. Part of me feels that I can’t continue seeing her, that I should disengage because it hurts too much to have my trust broken over and over again. I know that this decision would leave me without any support, but right now that seems less painful. Another part of me is compelled to do something drastically self-destructive in order to prove to the CMHT that I really need support, that I’m not safe and can’t deal with this on my own. Unfortunately, my experiences have also taught me that the only way to get help is to do something drastically self-destructive.

I have very little point of reference for a stable, consistent therapeutic relationship, where I don’t need to continually prove I’m sick enough to be worthy of support. Therefore, it makes sense that I struggle to engage and trust in mental health professionals. My experience is that they cause me more pain, build my expectations and then let me down, and wait until the last minute to provide patchy support. Its almost as if I’m in an emotionally abusive relationship. Why should I invest my trust in professionals, when this is my previous experience?

The most shocking thing to me is that had I not had these experiences of CAMHS I wouldn’t have these trust issues and insecurities. I grew up in a loving, stable, nurturing environment, this fear of trust, abandonment and neglect didn’t exist before CAMHS – it was CAMHS that caused them. How can it be that a health service can cause this long-term damage? I put my trust in a service to support me and help me get better, but instead I was left with the acute distress at the time and long-lasting issues which are having a great impact on my ability to engage in therapy now as an adult. I have always veered away from blaming anyone, but actually right now I’m pretty f*cked off. It is completely unacceptable for a service’s failings to have left me with such a deep-rooted fear of trust, abandonment and neglect. I had, and still have, enough difficulties to deal with without this on top.

For now, I’m going to have to get myself through the next 3 weeks somehow. I logically know that the reasons for my therapist’s absences are out of her control, so I will do what I can to negotiate with the urges to disengage or self-destruct. If there’s one thing I’ve learnt about myself over the years, it’s that I have an ability to ‘get through’ things even if I’m metaphorically on my hands and knees and dragging myself along.

I’d be interested in knowing if this is a common experience of those who have accessed CAMHS? Is my experience unique? Have you experienced long term effects of poor care and treatment? “

We would love to hear about your experiences of delays or inconsistent support from CAMHS. Please get in touch with [email protected].

Specsavers donates almost £20,000 to Cerebra

Specsavers directors, team members and Cerebra staff with Imogen at the Pen y Fan summit
Specsavers directors, team members and Cerebra staff with Imogen at the Pen y Fan summit

Staff at Specsavers opticians have helped donate nearly £20,000 to us, following a year of fundraising.

39 Specsavers stores across south and mid Wales joined forces to raise as much as possible in one year for children with brain conditions, and their families.

By organising an array of activities, including bake sales, fancy dress days, cycle-thons and a climb to the top of South Wales’ highest peak, Pen y Fan, Specsavers has donated an impressive £19,121.54 to us.

Neil Robinson, West Wales regional chair for Specsavers said: ‘The support provided by Cerebra is, sadly, much-needed by many families across Wales. During our time working with Cerebra, we’ve learnt the advice and information it provides to families goes far beyond leaflet sharing. It offers practical help and guidance to families to get the financial and social support they so desperately need when raising a child with a brain condition.’

Since its creation in 2001, Cerebra has provided support for families, including Imogen Ashwell-Lewis, a six-year-old with cerebral palsy, who Specsavers helped reach the top of Pen y Fan for the first time during the charity partnership. 

In addition to its support services and research work, Cerebra also has an Innovation Centre based within the University of Wales Trinity St David, where bespoke equipment is designed and created, free of charge, to make children’s lives easier.

During the partnership, Specsavers worked with the team at the Innovation Centre to help six-year-old Imogen Ashwell-Lewis, who has cerebral palsy, to climb Pen y Fan for the first time. A group of more than 40 people, including Specsavers staff, army staff and charity workers, helped Imogen summit south Wales’ highest peak.

Neil adds: ‘We’re proud to not only have donated money to Cerebra but create a lasting memory for Imogen and her family. It goes without saying that none of this would have been possible without the commitment of our staff, who have continued to fundraise for Cerebra, and the generosity of our local community for supporting our efforts.’

Terry Osborn, Income Generation at Cerebra, says: ‘It’s been brilliant to have the support of a national brand like Specsavers, and we are very grateful for the help stores across Wales have given to Cerebra over the past 12 months. Caring for children with brain injuries can put an immense amount of pressure on families, but the £20,000 raised will ensure life can be made just that bit easier for those we support.’