The team at our Innovation Centre are hard at work making a new riding hat for Imogen.
Imogen loves horse riding and is taking part in the qualifying round of the RDA dressage event. There’s only one problem: her helmet. In order to get it to fit the depth of her head (so it doesn’t fall over her eyes), it is really tight around her head. This leads to discomfort and pain when riding for long times.
The new helmet being developed by CIC and UWTSD has been made to measure by using high tech equipment to scan her head shape and then design the helmet around her. They’ve already made a prototype and have been to visit Imogen to try it out to see if it fits.
The final production unit is being manufactured this week, so we hope that Imogen will be riding safely and in maximum comfort very soon!
School. Some of us fondly remember our days in school as ‘some of the best days of our lives’.
School is an important
step in all children’s lives and is where most of us spend a significant amount
of time throughout our childhood and adolescence. It is a place where we are
taught academic skills which can help us achieve and pursue the careers we
choose for ourselves later in life. It is also a place where we are encouraged
to step outside of our social comfort zone and to socialise with other children
and adults outside of our immediate family.
Whilst some people
would agree their memories of school are positive, others will remember school
as a daily challenge to conquer. The demands put on children when they go to
school, whether that be academically or socially are significant. The pressures
on students to achieve the highest grades seem to be evermore increasing and throughout
life in school, children must continually negotiate their social environment to
‘fit in’ with their peers to make and sustain friendships.
Academic attainment and peer acceptance are both challenges that all children face during their time at school, however school can be a particularly demanding place for children with genomic disorders.
Genomic disorders, such as 22q11.2 deletion syndrome, are caused by changes in a person’s chromosome (their DNA). Genomic disorders are commonly associated with complex physical, developmental and psychiatric problems. Therefore, many children with these conditions present differently to their peers in physical appearance, social skills and their educational and mental health needs.
As such, children with these conditions may be perceived as different from the rest of their peers and may often become ‘easy targets’ of bullying. Additionally, some parents report that their child’s schools do not have the resources or expertise in their child’s condition to accommodate their child’s needs. An unsuitable school environment and bullying are both factors which can contribute to a child’s adverse experience of school.
Adverse experiences in childhood, including bullying, are significantly associated with poor mental health outcomes. Research has also shown that certain genomic disorders increases the risk of developing mental health problems, such as anxiety, Autism Spectrum Disorder, attention-deficit/hyperactivity disorder and psychosis.
However, because not all children diagnosed with these genomic conditions develop mental health conditions, it is believed that both environmental and genetic factors contribute to the increased risk of poor mental health in these children. Therefore, much about the environmental risk factors, including school experiences, that children with genomic conditions encounter remain to be explored in order to understand how mental health conditions develop in this group.
I have just started my
PhD project at Cardiff University, in which I will be exploring school
experiences of children diagnosed with certain rare genomic disorders to answer
the question ‘do adverse school and bullying experiences
of children with genomic disorders contribute to their increased risk of
developing mental health problems?’
To answer this question, I will be
exploring school and bullying experiences that children with genomic disorders
encounter and then I will investigate if and how these experiences differ from
the experiences of their peers. I will then look at the effect of these
experiences on the mental health outcomes of children with genomic disorders.
To explore these areas, I would like to speak to children diagnosed with certain genomic conditions, as well as their parents and teachers to gather an understanding about their experiences of school. For this project to successfully address the areas of interest and concern of parents, I would like these conversations to explore topics and issues that children and parents feel it important to investigate.
Therefore, if you or your child has received a diagnosis of a rare genetic condition, and you have any thoughts about this research, comments for specific topics you think it would be important to investigate, or if you would simply like to share your child’s experiences of school, I would love to hear from you with your suggestions. Additionally, if you would like to get in contact to ask questions about the project, please do.
By understanding the risk factors
associated with poor mental health outcomes in children with genomic disorders,
we can inform intervention strategies to reduce these risks and ultimately
improve children’s outcomes and quality of life.
Thank you for reading
and I hope to hear from you!
If you would like to get in contact with Lowri to hear about your experiences, please email [email protected].
of the rare genetic conditions Lowri will be exploring for her PhD include:
1q21.1 deletion/duplication, 2p16.3 deletion (NRXN1), 3q29 deletion, 9q34.3
deletion (Kleefstra), 10q23 duplication, 15q11.2 deletion/duplication, 15q13.3
deletion/duplication, 16p11.2 deletion/duplication, 17q12 duplication, 22q11.2
Scots law provides powerful rights to education and support from other services, but this alone isn’t enough. The law can be complicated and difficult to understand. Even when you know what your rights are, it can be daunting, exhausting and sometimes intimidating to challenge public officials.
To help parent/carers in Scotland we produced the Accessing Public Services in Scotland Toolkit which is packed full of useful information and resources to give parents, carers and professionals the skills and knowledge they need to advocate for themselves.
We are very grateful to the RS Macdonald Charitable Trust who have awarded us a grant to fund our Accessing Public Services in Scotland Toolkit Workshops. Their generous support means that we can provide our workshops free of charge and therefore help more parents and carers to access health, social care and education support services for their child, helping them to discover a better life together.
These free workshops are
run by our trained facilitators who will help families get to grips with our
toolkit by showing them how to adapt the solutions and templates to their own
individual circumstances and so improve parent/carer’s knowledge and confidence
to challenge the decisions made by public bodies about their child’s care. The
workshops have also been accredited by the CPD Certification Service.
To date there have been 68
workshops delivered on the English/Welsh version of the toolkit and feedback
‘The training was very useful and highlighted to me how much I roll over when asked. I now feel empowered to be able to get those things which my son needs.’
‘Having had a bad experience my confidence had been knocked but knowing my son’s rights and how to productively move forward has inspired me. Thank you.’
If you are a Scottish parent/carer
forum or work for an organisation who support families in Scotland and are interested
in hosting a free workshop then please get in touch with[email protected].
We have joined leading UK Neurodevelopmental and Mental Health Charities to Launch The ‘Embracing Complexity Coalition’
The Embracing Complexity Coalition launched on the 21st May at an event at the Houses of Parliament hosted by Dame Cheryl Gillan, MP, Chair of the APPG on Autism, Rt. Hon. Matt Hancock, Secretary of State for Health & Social Care and the Chair of the Embracing Complexity Coalition, Mr Jon Spiers, Chief Executive of Autistica.
The coalition is formed of leading neurodevelopmental condition and mental health UK charities including: ADHD Foundation, Afasic, Brain & Spine Foundation, British Dyslexia Association, Cerebra, Down Syndrome Research Foundation UK, Epilepsy Action, Epilepsy Research UK, Fragile X Society, I CAN, Mencap, McPin Foundation, MQ, The Neurological Alliance and Tourettes Action – chaired by Autistica.
Why do we need a coalition?
The charities have joined up because of a finding in their survey that people living with a neurodevelopmental condition often have more than one condition and need more integrated support and the charities have taken the first step by creating a coalition.
The Coalition is spearheading a movement to ‘work together’ to create a new approach for the future to better meet the complex needs of people with neurodevelopmental conditions (NDCs) and mental health conditions, who often have more than one condition.
Neurodevelopmental conditions affect up to 10% of the population and include a wide range of conditions, from autism and attention deficit hyperactivity disorder through to epilepsy, OCD, dyspraxia, dyslexia, and many others.
We are calling for action to be taken to better meet the needs of people with NDCs and mental health conditions and prevent the poor outcomes and preventable deaths of the 6.6 million people living with NDCs as identified in the NHS Long Term Plan, helping them to live longer, healthier, and happier lives.
Secretary of State for Health and Social Care, Rt Hon. Matt
Hancock opened the speeches by championing the huge value and diversity of
thinking people with NDCs bring to society, the importance of tackling
inequalities, and the critical importance of spearheading a new approach to supporting
people with NDCs and mental health, as outlined in the NHS Long Term Plan.
“Dyslexia is a distinction, not a drawback. I know first-hand the challenges it brings, but I know that with the right support dyslexia brings benefits too.
“I strongly believe that everyone has a valuable contribution to make to society, and I am absolutely determined to improve services for neurodiverse people to help each and everyone reach their full potential.
“Through our Long Term Plan, backed by an extra £33.9 billion a year by 2024, we are transforming NHS services to tackle inequalities and provide high quality, safe and compassionate care.”
Health Secretary Matt Hancock
Embracing Complexity: Towards New Approaches for Supporting People with Neurodevelopmental Condition
A report by the newly formed coalition, ‘Embracing Complexity: Towards New Approaches for Supporting People with Neurodevelopmental Conditions’ was also launched, including results from a survey distributed through 25 charities that specialise in neurodevelopmental and mental health conditions. The survey showed seven out of ten people (67%) with neurodevelopmental conditions either had or believed they had more than one such condition. Furthermore, nine out of ten people living with NDCs asked for joint research into overlapping neurodevelopmental conditions, joint campaigning for better screening & diagnosis and joint campaigning for ‘joined-up services’. The survey also highlighted that over half of the people surveyed said they ‘do not feel accepted by society’and ‘do not know where to go for help’.
A joined up approach
Jon Spiers, Chair of the Embracing Complexity Coalition and
Chief Executive of Autistica, emphasised the need for a joined-up approach to
work together more effectively and seek opportunities to accelerate impact:
“There is growing recognition that neurodevelopmental conditions,
which have historically been approached through a single lens, often share
symptoms. This finding was reinforced in the new Embracing Complexity Survey with
over 500 people living with neurodevelopmental and mental health conditions. Most
people affected have more than one neurodevelopmental condition and often many.
Even when symptoms differ, there is a shared experience of challenges accessing
services and the need for better support. There is no doubt joining up services
complex and will require new approaches,but people living with
these challenges have to face complexity throughout their lives. We need to
ensure diagnostic pathways take into account that people often have multiple
conditions, ensure diagnosis waiting times are time limited and that services in
every aspect of life take greater account of people with NDCs through better
training, reasonable adjustments and proactive support. Greater investment in
research to understand more about the lived experience of people with NDCs and
how to deliver services that better meet their needs is critically needed.”
Key findings from the Embracing Complexity survey
The Embracing Complexity Survey also highlighted the current substantial gaps and focus needed across the health, social care, and education services to tackle inequalities and enable people to reach their full potential.
The majority of people (58%) diagnosed said it was not easy to get a
Difficulties Reported in Diagnosis (in both diagnosed and undiagnosed), included: long waiting times to see a specialist,
being told children were too young to be considered, constant referrals to
different healthcare or educational providers.
Difficulties Reported in Diagnosis(in undiagnosed): 58% of people
surveyed had tried to get a diagnosis but experienced many of the
same issues as above, as well as experiencing dismissive attitudes, not knowing
where to go for help, and feeling lost in the system. Nearly 8 out of 10 (77%) were not made aware of other possible diagnoses which might affect them, despite the
evidence that shows strong associations between some NDCs.
Nearly half (46%) of individuals were
not offered information or support to help them understand how the
condition could affect their life on diagnosis.
felt they could not access health services and 40% felt their additional
support needs were not met to help them access health services.
Nearly half (46%) of the 38% of survey participants that reported they were in contact
with the social care system said their needs are generally not well
supported by the social care system, with 58% feeling they were not well
Nearly half (46%) of the 25% of survey participants that reported they were in contact
with the welfare system said their needs are generally not well supported by
the welfare system, with 63% feeling they were not well understood.
Almost a third (27%) of respondents in education said the education system is not
supporting them well.
“It is of paramount importance that we identify new ways of working and best practice and scale it up to drive improvement across the country to better support people with neurodevelopmental conditions, their families and carers. We want to make sure people get the support, care and treatment that is right for them. This means they must be involved in saying how to get this right. It means being person-centred in all work.”
Dr Tony Lloyd, CEO, ADHD Foundation.
In keeping with the ethos of the report recommendations to
drive a much-needed person-centred joined-up approach, the meeting highlighted
the real need to deliver better outcomes for people with neurodevelopmental
conditions and share work they are doing to achieve this. This is wholly in
line with the NHS Long Term Plan, which commits to a wide range of actions to
address the unmet needs of people living with NDCs and mental health conditions,
and are supported by the Coalition, such as:
Action will be taken to tackle the causes of
morbidity and preventable deaths in people with a learning disability and
The whole NHS will improve its understanding of
the needs of people with learning disabilities and autism, and work together to
improve their health and wellbeing
Over the next three years, autism diagnosis will
be included alongside work with children and young people’s mental health
services to test and implement the most effective ways to reduce waiting times
for specialist services
Local providers will be able to take control of
budgets to reduce avoidable admissions, enable shorter lengths of stay and end
out of area placements. Where possible, people with a learning disability,
autism or both will be enabled to have a personal health budget (PHBs)
Increased investment in intensive, crisis and
forensic community support will also enable more people to receive personalised
care in the community, closer to home, and reduce preventable admissions to
Focus on improving the quality of inpatient care
across the NHS and independent sector
A commitment that funding for children and young
people’s mental health services will grow faster than both overall NHS funding
and total mental health spending, and a commitment to grow investment in adult
mental health services faster than the NHS budget overall for each of the next
Mental health support for children and young
people will be embedded in schools and colleges
Show your support
The event closed echoing the report’s ‘Call to Action’ – “It is critical we – government, civil servants, charities, research funders, public services and society – work together effectively and seek opportunities to accelerate a future where people with neurodevelopmental conditions and their families enjoy the same opportunities and experiences as the rest of society”.
Pledge support for the call to ‘Embrace Complexity’ and drive change for people living with NDCs by visiting www.embracingcomplexity.org.uk and posting your own commitment online.
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.
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 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
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
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
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 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.
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].
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,
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
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.’