Has your local continence team told you that your child
isn’t old enough to have a continence assessment? Our new template letter could
help you to make a complaint.
Entitlements and Problem-Solving (LEaP) Project helps families who
are struggling to get the support they need from health or social care
services. We recently heard from a parent who had been told that her 4 year old
son, who has autism and complex epilepsy, wouldn’t be able to get a continence
assessment until he turned 5.
We wrote a template letter to help the family make a
complaint to the local health authority. We quoted some of the relevant guidance, which makes it clear that health
authorities shouldn’t make children wait until they reach a certain age before
they get a continence assessment.
We’ve uploaded the template letter so that other families who might find themselves in a similar situation can use it to make a complaint. We have separate versions of the letter for England and Wales.
who lives in Surrey, contacted our LEaP Project in January for help with a
school transport problem. Her daughter, Amelie, is 11 years old and has Phelan McDermid
syndrome. The local council had been providing transport for Amelie to go to a special
school for children with severe and profound learning difficulties. When Karen told
the council that they were moving to a new address, within 3 miles of the
school, the council said that she needed to re-apply for transport.
explained in her application that Amelie wasn’t able to walk to school because
of her complex needs. But the council decided not to provide transport, because
Karen had help from carers and access to a car, so she was expected to drive
Amelie to school or accompany her on public transport.
a letter to help Karen appeal the council’s decision. The letter explained that
the council had a legal duty to make transport arrangements for Amelie, who
couldn’t be expected to walk to school or travel by public transport, even if
Karen accompanied her, because of her disability. The letter also pointed out
that parents can only be expected to accompany their child along a walking
route, not by car.
the council refused Karen’s appeal and insisted that she had ‘means and
resources available’ to get Amelie to school. With our support, Karen contacted
a manager at the council to demand a fuller response, which specifically
addressed all the health and safety issues she had raised. A few days later, the
council phoned Karen and agreed that Amelie was entitled to transport because
of her special educational needs and disability.
very pleased with the council’s decision: “It was extremely
stressful having to deal with the loss of transport at the same time as moving
and to receive the default responses from the council, which really felt like
we hadn’t been listened to. I was very lucky to be supported by our school,
social worker and GP and the LEaP Project and I think with the combined effort
we got the right result. I am so happy that Amelie will be able to get to
school in a way that is best for her.”
to challenge the council twice before getting transport for Amelie, because the
council didn’t consider her appeal information properly. We know from our
experience on the LEaP Project that some councils have refused transport twice
or three times before putting things right.
Emma tells us about the challenges of transitioning from child to adult services. You can read part one here.
It is now the month before Joshua’s 18th birthday, so we really are on the countdown to adulthood now. We have recently had a weekend with a hospital admission for seizures, which brought home some of the reality of what is to come.
In the ambulance on our way to hospital there was a debate between the paramedics over whether my 17 year old son would be treated by children’s A&E or Adults. The paramedic was under the impression that, as he was still in full time education, he would still be treated by paediatrics but there was some hesitation over whether or not they would accept him, once we arrived. Apparently for our local trust, adulthood begins at 16 and, after some debate, with Joshua on the trolley, they compromised and accepted him into Children’s A&E, but they warned me, if he was admitted onto a ward, that it would need to be an adult ward. I just wanted my son to receive urgent treatment and so I accepted their contradictory and confusing distinction.
In fact, when he was settled and we talked more, once they found out that he was still under a paediatric neurologist, as we had not yet been transferred to Adults, they relented and we were accepted by the Children’s ward. This confusion gave me an insight of what may lay ahead in our future, with just a month to go until this critical birthday. It seems that Joshua currently exists in an odd limbo-land.
I took the opportunity once on the ward, to ask the nurses something that had been bothering me for a long time. I had been told on one of our hospital stays, that there would be no facility for me to stay with Joshua once he was an adult, if he requires any overnight hospital stays. I was reassured to hear that this was scaremongering and that this was not the case. Nursing staff would need me there to reassure adult Joshua and to act as his interpreter too.
I did have a glimpse at the future though, that Children’s A&E would be preferable as, as the A&E consultant explained that there would be “fewer drunks and druggies in there!”, the prospect of which sent shivers down my spine. I was much more comfortable surrounded by murals of jungle animals and smiling children’s nurses, even though he was clearly too long for their trolleys then hospital beds on the ward.
After this hospital admission, I chased both his paediatric neurologist and his children’s epilepsy nurse, to remind them that Joshua’s birthday was fast approaching. Both have now come back to me with dates when we will be introduced to the new adult specialist in March. I have also had a telephone review with the Continence Service to discuss a handover to the adult service, when a home visit will be required and no doubt, they will try to talk us out of the current continence products that we are happy with and that we fought for, for a year.
We have recently had the review meeting for Joshua’s Education Health Care Plan, where both his current and adult social workers were present. There was a great deal of discussion about Joshua’s future respite and daycare, once he leaves education. At the end of the meeting, the Children’s social worker bid me goodbye and wished me luck, as she will never see me or Joshua again, which was a strange feeling. In the run up to adulthood, I keep getting these little nudges or reminders, so that I am forced not to ignore it.
Thankfully Joshua’s current respite provision has some flexibility to extend his stays, to assist with his transition to an adult respite provision. I think that I have finally found somewhere that I could picture Joshua enjoying, that is just 35 minutes from home and so we have time to plan his future there and to prepare him – and me – for the changeover. I will be emotional when he finally says goodbye to his current provider and even in the EHCP meeting, my only tears came when I tried to express what their service and care has meant to us as a family.
But then once that is resolved, we will have to turn our attention to the even thornier issue of how he will be occupied during the day once he leaves school at 19! Joshua does not have the capacity to go on to further studies or some form of manual employment, so it will only be about keeping him occupied and happy for the rest of his life. We will be looking to replace the role that school plays in his life currently: some reason to get up and out in the morning and somewhere where he meets and enjoys the company of his peers and caring staff, while they do fun activities. I cannot address that yet, but I know that it is on the horizon and I must not leave it until the last minute but tackle it.
School will organise “taster sessions” of some alternative providers. These are big choices that we will be making together for his future and it feels a heavy responsibility to get it right for him. I am hoping that once again, I will recognise the right provision when I see it, that it will give me that sense of ‘home’ when we look around. For me, when Joshua has found the right school and respite setting, then they have both felt like home and so sadly, this birthday he will be evicted from his respite home and next year, he will be evicted from school too. Thank goodness that there is a year gap between them as to lose both on his 18th birthday, would be so unsettling and would leave us in inevitable crisis.
So that is a blessing, as is the fact that we will be supported throughout the change. I was recently asked by a parent if I would advise them to get a social worker in place, now that her son was 16, in readiness for transition. Of course it would depend on how good the social worker was, but I would not want to navigate this change without somebody who knows the system at our side, fighting our corner. Because it will be a battle, no doubt, and so we need a coach shouting out advice from the sidelines and picking us up when we fall down.
We’re thrilled to introduce you to the two newest members of our sleep team, Carwyn Tywyn and Claire Cox.
Hi, my name is Carwyn and I
was delighted to begin 2019 in my new role as Sleep Practitioner at Cerebra.
My early career background was
in current affairs, both as an academic and a journalist. I was awarded a PhD
in Welsh Politics at Cardiff University. After a brief period as a research
assistant and academic tutor, I became Political Correspondent for GOLWG, the
Welsh language weekly current affairs magazine. In this role, I was based
full-time at the National Assembly for Wales during 2006-07.
It was while working at the
National Assembly that I became more informed about and interested in the work
of the voluntary sector in Wales. Since 2008 I have worked in research and
senior development roles for a number of organisations, including the
Disability Law Service, Home Start UK and Mencap Cymru.
My role prior to joining
Cerebra was as a Regional Caseworker for the Mencap Cymru “WISE” project,
which, in partnership with Cardiff Law School, provided advice and support in
relation to learning disabilities. In 2018 the project was awarded the LawWorks
award for “Most Effective Pro Bono Partnership”. Whilst at Mencap, I also received
training in specialist approaches such as Mental Health First Aid, which has had
a major influence on my outlook.
I have two children, Heledd (11) and Gwyn (6). I think it is the combination of being both a parent and frontline disability caseworker, which has attracted me to the role of Sleep Practitioner. I feel very lucky to have the chance to apply and give back some of my knowledge and experience to children and parents who may be struggling in all kinds of life circumstances.
In another life, I am a
professional harpist, and was winner of the folk harp competition at the
National Eisteddfod in 2013. Along with my daughter, I am a keen supporter of
AFC Wimbledon. We saw them win at Wembley in 2016!
I look forward with anticipation to my new career at Cerebra. Diolch yn fawr.
Claire. I am super excited to be part of the sleep team. I can’t wait to start
helping families with their children’s sleep issues and empowering them to make
the changes they need.
volunteering with many charities over the years I am so happy to be working for
such a wonderful one!
I come to Cerebra from working privately in London as a Prenatal/postnatal/Newborn care specialist, trouble shooter, Nanny and sleep practitioner.
Prior to this I used to be a professional dancer which took me all over the place doing many different things!
I also had my own ballet school.
partner and I have our own theatrical production company of which we are very
are about to leave London to live our dream life in Clovelly, North
It’s a big year of change for me and I couldn’t be happier to be working with all of you for such a worthwhile and needed charity!
Has your local continence team told you that they can only
assess your child at a school/hospital, rather than at home? Our new template
letter could help you to make a complaint.
Entitlements and Problem-Solving (LEaP) Project helps families who
are struggling to get the support they need from health or social care
services. A parent recently contacted the Project for
advice about her son’s continence assessment. She had been told that the
assessment had to take place at her son’s school and that home assessments
weren’t possible. She was also told that the supply of nappies would stop if they
weren’t able to attend the assessment at the school. The family wanted the
continence team to be more flexible and consider giving them the option of an
assessment at home, because of their son’s complex medical needs.
We wrote a template letter to help the family make a
complaint to the local health authority. Our letter explains that public bodies
must act reasonably and where they have the power to do something, they must be
prepared to act flexibly, instead of adopting rigid policies.
We wanted to share this template letter with other families who might find themselves in a similar situation. We have separate versions for England and Wales.
Hello, I’m Lowri and I’m really happy to be joining Cerebra
to work on an exciting and new Welsh Government funded project, as part of a
Knowledge Transfer Partnership between us and Cardiff University. Before
joining the team, I worked for the National Centre for Mental Health (NCMH). The
NCMH is a team based at Cardiff University, and they research the causes of
mental health conditions in adults and children. Speaking with parents of
children taking part in the study, it was clear that families often feel the
level of support is lacking after they receive a diagnosis. This project aims
to address this important issue.
We will be working with the Cardiff University Division of
Psychological Medicine and Clinical Neurosciences in order to improve the
helpfulness of information and the services which families and children living
with rare genetic disorders struggle to access. We will be focusing on
improving mental health related information available to families.
Rare genetic disorders are caused by changes in a person’s
DNA (their chromosomes). These changes vary in size. That means they can either
affect a very small part of someone’s DNA, or the changes can be bigger and
affect a larger area. Some rare changes to our DNA can lead to serious impacts
on our physical health, brain development and affect our mental health too.
These disorders are rare because individually, they are not
seen very frequently in the general population. However, if we looked at the
whole population altogether, 1 in 17 people in the UK will be affected by at
least one of these conditions, that’s 3.5 million people! One of the most
common disorders is called 22q11 Deletion Syndrome (also known as DiGeorge
Syndrome), with 1 in 2000 new born children being diagnosed. Another, much
rarer syndrome is called Kleefstra syndrome, and occurs in less than 300 in the
UK. Cardiff University are currently
researching these conditions in order to answer the question often asked by
parents: “What does this diagnosis mean
for my child, and where can I get help and advice?”
Research has shown that people diagnosed with these rare genetic
disorders often experience difficulties with their mental health, yet families have
trouble finding helpful information and struggle to access mental health and
other services for their child. We believe it’s important that everyone can
access useful, high quality information about mental health conditions, based
on the very best evidence from research.
We aim to work with medical services, other charities, as
well as families with lived experiences to get a well-rounded idea of what services
currently offer that is really helpful, what is unhelpful, and what people think
could be improved. We will also ask what they think about the availability and
quality of information about developmental and mental health conditions in
children and young people. We hope that doing this will lead to important
changes in services in order to equip people with key information and empower
families and children to make informed choices that are best for them.
Myself and the rest of the team involved feel very
passionate and committed to this project, and hope that it will make positive
changes for families in the future.
Our Innovation Centre are proud to make products that help disabled children to enjoy and experience life alongside their friends. Sometimes the most simple of things make the biggest difference.
Owen’s mum got in touch for some help. Owen loves to join his friends on the swings in the park but sometimes forgets to hold on. Our team at CIC simply converted a climbing harness to fit Owen and to clip onto the swing’s chains, keeping him safe as he soars.
A simple job but one that has made a huge difference to young Owen’s life.
Watch Owen in action
If we can help you with an everyday problem, however big or small, we’d love to hear from you. You can contact us on [email protected].
Our librarian Jan reviews two new books you can borrow from our postal lending library.
‘There are Things I Know’ by Karen B Golightly
What happens when a man you’re sure you’ve never met before picks you up from your school trip and says you mum has gone to heaven and you have to go to a new school? Well if your mum has taught you The Survival Game, you are good at maths and love computer games surely things will work out OK. Told by 8 year old Pepper who has his own way of looking at the world. Can he work out how to find his mum and older brother and sister? He may love helping out with the chickens and the teachers at his new school but does he really believe his mum is in heaven? There are things he knows and he knows that his mum is not dead. An intense read that keeps you in suspense right up to the end.
Eye Can Write by Jonathan Bryan
This is a very special book written by a 12 year old boy who is unable to talk or write, he has spelt out letter by letter using a spelling board. You can watch him doing it on his blog.
In the book you really get a sense of Jonathon’s love for life. He tells us about the inner world he inhabited before he was able to communicate and how it felt to finally be able to interact with his family and the world around him. He writes with joy about his sisters and his friend at the special school, Will. Jonathon tells us about the long process of learning to use the spelling board and how frustrating he finds eye-gaze technology.
He has won several awards including a ‘Diana Legacy Ward’ presented to him by Princes William and Harry and tells us about his experience of that night. And he writes about ‘Teach Us Too’, the charity he fronts that aims to promote the teaching of literacy to all children, regardless of their disability. We are sure to hear more from this remarkable young man in the years to come.
My name is Emma and I am married to Michael – it is our 23rd wedding anniversary today – and together we take care of Joshua, our 17 year old son.
Joshua was born on 5 march 2001, after being induced as he was two weeks overdue. It was a very speedy delivery, which I do not remember too much about, but he began fitting as soon as he was delivered and so he was taken away to an incubator immediately. Later that same day, when he continued to fit and required oxygen to breathe, we were both transferred in separate ambulances to the Special Care baby unit across the city. We stayed up all night watching him and jiggling him as we had been shown, when he forgot to breathe.
On our 4th day in SCBU, Joshua had a MRI Scan and we were told that he had ‘devastating brain damage’ due to a stroke, and that he may not see, hear, walk or talk. This was unbelievable news to absorb and it took another week in SCBU to adjust and to get to know how to care for him properly.
When he was 11 days old we brought him home and we tried to do what we had been told, to treat him like a normal baby. We had no other children so that was all that we could do and Joshua thrived. He grew from being a very thin, newborn to a chubby, smiling one year old. We had regular health visitor attention and Joshua received Portage input too. With the help of splints, Joshua walked and he talked, he would say “hiya” to everyone when out shopping. So I was able to fool myself into believing that, he may be a bit slower than his peers, but that he would achieve all of his milestones.
It was only when Joshua started at Nursery school, when he was at aged 3 or 4, that I suddenly saw that my bouncing boy was not the same as his friends, and it came as quite a shock. At 4 years old, epilepsy became a real issue and we had to start on anti-epileptic drugs. Joshua progressed with his peers to mainstream primary school and thanks to his brilliant Nursery head teacher, he had a statement which meant that he had a full time teaching assistant to support him there. He loved the first couple of years in reception classes, when he would sing at himself in a mirror – he did a great rendition of ‘Magic Moments’ and ‘Close to you’.
But as everyone got older, he was spending more and more time alone with his TA in a small room playing with toys while his peers were learning maths and history. So we made the difficult decision to apply for a Special School place for him. When he was 7 years old, Joshua left his ‘friends’ behind and changed to a special school. His first was not a great success as it coincided with his epilepsy getting much worse and the school was simply not equipped to deal with the aftermath of seizures, so he was forever being sent home or sent to A&E in an ambulance.
In 2011, when Joshua was ten years old, we went to a tribunal to move him to another Special school, which had school nurses on site. Joshua is still at that school now, in their 6th form, and it suits him very well. When you find the right placement for your child, it is a very comforting feeling, as though he has gone ‘home’. I like the school so much that I have become a school governor and volunteer there a lot. I have a mission to support other parents and to encourage them to socialise more, so I run a monthly coffee morning for parents when we enjoy cake and chat. I have also just begun to organise termly mental health sessions for parents and carers, as it is still a taboo subject and yet a very real problem among our community of parents.
However the end is well in sight. Joshua will have to leave this school when he is 19 years old, in July 2020 and so we will soon begin the ‘transition’ process. I detest transition as in my experience, it involves changing from a comfortable, familiar environment to one that is unknown and frightening. I begged Joshua’s nursery head teacher to keep him there until he was 16. She refused, on the grounds that he would be too big for the furniture! I have stopped begging now. I realise that time moves on and that Joshua will have to too, but it does not mean that I have to like it. I have made great progress in the last year as I am no longer an ostrich about it and that is largely due to our Adult social worker who has given me more confidence and keeps us on track.
We are currently in the process of looking around alternative respite provisions, as where he currently goes once a month for a weekend’s short break, will no longer be able to keep him once he turns 18 next March. Once that is resolved, we can turn our attention to his day care provision. We are going to lose the epilepsy nurse who has supported us for the last 13 years, as we are transferred into adult healthcare. It is all change, so turning 18 for Joshua is not like the momentous milestone that it is for his peers: it will not be about legally drinking alcohol and going to university for Joshua, it will be about transition to adult services and starting again, just as we were on an even keel with his health and social care.
You can read more from Emma on her blog Ups and Downs Mum. Emma will be writing some articles for us so if there are any topics you’d like her to write about let us know in the comments.