If you have a child 16 or under with a brain related condition fill in our referral form below and we could give you the help you need to get a good night’s sleep.
The Cerebra Innovation Centre recently designed these rocket shelves. This cool piece of equipment was originally designed for a young boy, to help his mum who has to transport numerous medical machines whilst transferring him from room to room.
They were styled to suit a child’s bedroom and be more like a child’s toy rather than looking dull and medical. They feature 3 shelves, space to store an oxygen bottle, a 4 socket extension lead so all the machines are plugged in and you only need one wall socket, and 4 omnidirectional wheels so it can be moved around effortlessly. Additionally, there is ample space to wind wires and store bits and bobs.
Since the team at the Innovation Centre first started making the shelves, there have been many happy children and parents that have benefited from the design, including Eve. She and Dad Steven are currently testing out the rocket shelves and sent us these gorgeous pictures.
Steven said: “It’s amazing THANK you so much I will send more pictures as we go on amazing.”
Heidi and Tim also had a rocket shelf for their little one Charlotte, and we were so pleased when Heidi sent us in this lovely feedback.
Heidi says “The shelving unit is working out great for us and easily stores all her machinery and medical items, fitting well into the bedroom space.
The fact it is on wheels is great as we have to change her ventilators weekly which means needing easy access to the back of the machines which the wheels and open backing provides for”
Thank you to everyone for the wonderful feedback on our rocket shelves.
If our Innovation Centre can help you and your family just get in touch on email@example.com.
Our LEaP Project helps Rhiannon get the continence supplies she needs and our template letter could help you to write to your local health board.
Our Legal Entitlements and Problem-Solving (LEaP) Project supports families who are struggling to get access to health or social care services. Louise contacted us for help with getting continence products for her daughter, Rhiannon, who’s 9 years old and has Wolf-Hirschorn syndrome. Louise and Rhiannon live in North Wales.
The local continence service had told Louise that it couldn’t supply more than 4 continence products per 24 hours, even though Rhiannon needed more because of her condition. Louise was also concerned about the quality of the nappies, as the adhesive fasteners seemed to be aggravating Rhiannon’s skin and would often break off. We told Louise about some guidance published by the Welsh Government , which describes the level of service that patients can expect to receive. This guidance says that the ‘4 a day’ maximum is just a general rule and that the actual number of products supplied will depend on a child’s individual needs. The guidance also says that families can ask for a re-assessment if their needs change. Louise took our advice and asked for a reassessment.
During our research into Louise’s problem, we noticed that another part of the guidance said that there was a strict limit of 4 pads per day and that families who needed more would be told to buy their own. We wrote to the Welsh Government’s Cabinet Secretary for Health to explain Louise’s situation and highlight the contradiction between the different parts of the guidance.
In response to our letter, the Welsh Government asked the local health board to address Louise’s concerns. It also agreed to update the guidance to make it clear that the number of nappies supplied should always meet a child’s assessed needs – in the meantime, it agreed to contact every health board in Wales to explain the guidance, so that other families weren’t told that they could only have 4 products a day.
The health board’s head of nursing contacted Louise and we’re pleased to report that Rhiannon is now getting the nappies that she needs. The local continence team has told Louise that it will review Rhiannon’s needs on a regular basis.
Do you live in Wales? Has your local continence team said that you can’t have more than 4 continence products a day, even if your child needs more? If so, use our template letter below to write to your local health board.
If you live in England and you’ve had similar problems to Louise, contact us at firstname.lastname@example.org
Template letter to ask the local health board for more continence products to meet a disabled child’s needs.(this letter applies to Wales only):
Please change or delete the green text as appropriate.
Continence products for my [son/daughter][name]
My [son/daughter] [name] is [age] and s/he has [disability/condition].
I was recently told by [name of person] that [child’s name] is only entitled to a maximum of 4 continence products per 24 hours. However, [child’s name] needs more products than this because [explain why your child needs more because of their condition].
I recently read an article in Cerebra’s newsletter, which explained that the Welsh Government has published guidance called the “All Wales Children and Young People’s Continence Guidance and Care Pathway”. This guidance says that:
“the number of disposable products supplied per 24 hours will depend on the individual child or young person’s needs, but would normally not exceed 4 products per day without prior consultation with the Continence Service”
This means that whilst the health board can have a ‘general rule’ of 4 products per 24 hours, it should always supply enough products to meet a child’s assessed needs. I understand that the Welsh Government’s Chief Nursing Officer, Professor Jean White, is arranging a review of this guidance to make this meaning clear to all health boards.
As such, I am writing to ask the health board to:
– assess [child’s name]’s needs within [give a timescale you feel is reasonable], and
– provide a sufficient number of products to meet his/her assessed needs.
Would you like the opportunity to help families get the knowledge they need to secure appropriate health, social care and education services to help their disabled child achieve the best possible outcomes?
We’re the charity that works with families who include children with brain conditions. We listen to them, we learn from them, we work with them. We carry out research, we design and innovate, we make and share. What we discover together makes everyone’s life better. Join us on our journey, and who knows what we could find?
Our research shows that disabled people and their families experience great difficulties accessing support services from public bodies. Our Accessing Public Services Toolkit aims to unpick these difficulties and suggest effective strategies for resolving them. It’s based on the idea that it’s not in the best interests of public bodies to have these commonly occurring problems and that most of these problems are capable of being resolved without involving lawyers and great expense.
After receiving such positive feedback on the Toolkit in England, and in response to requests from north of the border, we’ve adapted our Toolkit to make it relevant to Scotland. We now want to roll out workshops across Scotland to assist parent/carers in using this new toolkit. It can be daunting, exhausting and sometimes intimidating to challenge public officials so by running these workshops we want to empower parent/carers to not feel fearful about complaining.
If you are a parent/carer of a child with a brain condition and you’d like to be involved in helping to run these workshops in Scotland then please send an up-to-date CV and covering letter to Beverley Hitchcock by 5pm on Thursday the 12th October 2017. Full training will be provided, along with a daily rate of £150 (£75 for a half day) and travelling expenses.
Our Sleep Practitioner Sarah Coldrey is used to helping families with their sleep difficulties but, as she explains, that doesn’t mean she doesn’t experience the same difficulties with her child Theo. Theo was born prematurely and Sarah updated us on his progress as well as how she settled Theo into a better bedtime routine.
When Theo reached one we found that we were in a fairly good routine. He would wake around 6.30am, have 2 short naps a day and then bedtime was around 7pm. He was generally asleep within 10 minutes.
We followed the same bedtime routine every day. At 6.15pm he would have a bottle of warm milk downstairs, we would then go upstairs and Theo would have a bath for about 15 minutes. We would then go straight to the bedroom and get into pyjamas. Once ready for bed we would sit and read a few stories in dim lighting. I would then carry him to his cot and sing twinkle twinkle little star, I would leave the room and Theo would self-settle to sleep in a dark room with black out blinds, sometimes he cried but it was only for a minute or two.
Between ages one and two Theo slept generally very well and we felt lucky. Sometimes he would wake in the early hours but we found that this was probably because his room was getting quite cold and so we put a heater in his room over the winter that came on around 4am. This seemed to improve the situation and Theo would sleep until at least 6am.
Around the age of two, Theo started to wake in the night. I found this confusing as he was able to self settle to sleep and so I didn’t feel there was an obvious reason why he wouldn’t be able to re settle himself during the night. I did however feel that Theo was going through some developmental changes. His language was coming on and he was starting to potty train. He was also very clingy when I dropped him to nursery (normally he couldn’t have cared less when I left him)
For the first few night wakes, it was such a shock to the system that we just bought Theo into our bed as most people do (even though I’m a sleep practitioner, I’m still human and the need for sleep took precedent).
For some people co sleeping works well, but for us it did not as Theo tended to fidget all night and somehow take up nearly an entire double bed and so we needed a new plan.
Initially I used a chair bed (a fold out foam bed) and would lay on the floor next to his cot and sometimes hold his hand.
After doing this for a few days, I decided I was being too soft and wanted to move things along, so I moved onto a single bed that was in his room but was much further away from his cot. I felt pleased about this because he wasn’t coming into our bed and I was able to create a bit of distance between him whilst still being in his room.
Fast-forward a couple of months, Theo seems more settled in himself and goes to nursery happily again. Some nights he wakes in the night and we will leave him to self-settle back to sleep and some nights we know that he probably needs the comfort of having us nearby and so we still go into his room and sleep on the single bed. This is not ideal but it works for us in our real life. Theo continues to self-settle at bedtime and so I’m confident his good sleep habits will return.
However – I know we have a whole new battle ahead of us when we transfer Theo from a cot to a bed!
You can find out more about our Sleep Service here, or call our freephone helpline on 0800 328 1159.
Our student researchers at the School of Law, University of Leeds have published a report about the accuracy and accessibility of school transport information on local authority websites in England.
The students looked at 71 websites and identified serious failings in the information provided to families. Almost 40% of the websites failed to clearly explain the legal rights of children with special educational needs or disabilities to school transport. The report also highlights how some school transport policies are more restrictive than they should be (see the examples on page 12/13).
If you have a school transport problem, our Parent Guide explains what you can do to solve it.
Our student researchers at the School of Law, University of Leeds, have published a report on Disabled Facilities Grants and home adaptations.
Disabled children and their families are legally entitled to a grant to pay for necessary adaptations to their home to improve accessibility and independent enjoyment of their surroundings. These are known as Disabled Facilities Grants (DFGs) and are usually for sums up to £30,000. The main aim of our DFG Project is to assess the cost effectiveness of DFGs and the wider impact adaptations have on the disabled child and their families.
The latest report from the team considers the benefits of investing in home adaptations for disabled children, including cost savings and improvements in well-being.
One of the results of devolution is that in a number of areas of the law England and Wales are developing different approaches – these are sometimes very different.
The law dealing with social care is no exception and both England and Wales have seen changes in this area in the recent past. The changes in Wales in particular are significant and social services teams are still getting to grips with implementing them.
We would particularly recommend them to anyone moving between the two countries.
In England, the special educational needs (SEN) reforms introduced in September 2014 continue to be rolled out.
Although all SEN statements should be converted into Education, Health and Care (EHC) plans by April 2018 recent government figures show that 45% of the statements are still in place with only 19 out of the 152 English local authorities currently on track to meet the deadline.
Clearly, many families are still waiting for statements to be converted to an EHC plan and they can get more information about the process from our guide on Education in England: Statements of Special Educational Needs: A Guide for Parents.
However, those families undergoing assessment for an EHC plan, and those who already have one, will find the information they need in the recently revised guide Education Health and Care (EHC) Plans. (Education in England: A Guide for Parents).
Meanwhile in Wales, the Welsh Government’s proposed SEN reforms, which it hopes will pass into law at the end of the year, continue with the Additional Learning Needs and Education Tribunal (Wales) Bill being scrutinised by the Welsh Assembly.
At the same time a consultation is being carried out on how the reforms should be introduced. For now, however, nothing has changed and the current system remains in place meaning that parents can continue to request an assessment for a SEN statement. Information on the Welsh system can be found in Education in Wales: A Guide for Parents.
James’ family were struggling with his bedtime routine and night waking. Our Sleep Practitioners, Pattie Everitt explains what sleep and advice she was able to give to help them tackle the problem.
Seven year old James has ASD and had great difficulty settling to sleep. He needed a parent with him until he fell asleep. He also woke in the night, went to his parent’s bed, and would then stay there for the rest of the night. This would result in his dad moving to sleep on a mattress to be able to get more sleep. The parents were finding this a great strain, as they did not have an evening together or a good night sleep.
Pattie explained that the waking in the night is something everyone does, normally without realising, but because James settled with a parent at bedtime, he would wake up, notice that they were not there, and then need their assistance to settle again.
The normal approach to this problem would be to reduce the contact gradually, by sitting a bit further away every few nights as the child is falling asleep and keep doing this until the parent is back downstairs. Pattie advised the family to try this, along with keeping the wake times the same each day so that James would get into a more consistent sleep pattern. A couple of months later, James’ mum replied with the following:
“Thank you for your response and advice. We have started the process of removing ourselves from James’ room at bedtime and he is now accepting us being out of the room – just outside. I suspect that the next step is to move further away which will then, as you say, reduce the nighttime anxiety, as he will get used to being on his own. We have also been sleeping with him during the night to keep him in his own bed and out of the habit of coming into our room. We are now thinking about whether we can move out but looking at your advice, we would also have to do this slowly.
Thanks for the advice on consistent bedtimes/wake times. We have managed to get him to bed a bit earlier by creating a more consistent routine but it can still take him a long time to go to sleep. I suspect that might just be the autism and a need to wind down? If we can get him to stay in his bed this, together with an earlier bedtime, is perhaps not so much of a problem.”
The parents persevered with the technique over the next few weeks, and also introduced one of their own:
“We have recently turned a corner with James’ sleeping with the use of a book on CD at bedtime. We listen to the CD with him, following the book, and then we turn the lights out and leave it on repeat at a quiet volume. James has learnt that when the CD is on, it is time for bed and that he should stay there. Although he still takes a while to settle to sleep, with the help of the CD, he is staying in his room. We leave the CD on very quietly through the night and he now stays in his bed. This is a dramatic turn-around and I think this strategy has worked because it provides a clear structure/cue about what James should be doing, and the CD helps his anxiety about being on his own/going to sleep.”
According to Pattie, using sound such as a CD to help with sleep can be beneficial, but if used for settling at bedtime it is often best to keep it at a low level all night as James’ family did so that he is exposed to the same environment when he wakes in the night. This can help the child fall asleep again on their own.
James’s mum was grateful for the support through the process:
“There is so little help out there for sleeping difficulties so your service is so valuable!“