Accessing Services: The View From a Parent

Alison Thompson

Alison Thompson

Alison Thompson is an author, speaker and mum to Daniel, who was diagnosed with ADHD when he was six. This is her heartfelt account of the troubles she has faced when trying to access services for Daniel.
My son Daniel was diagnosed with Attention Deficit Hyperactivity Disorder when he was six, but I’d known there was something wrong long before that. He was a fretful and anxious baby who rarely slept, and as a toddler he was constantly on the go. We went to a local parent and toddler group and he was the child you’ve all seen, running round the room knocking over the other children’s Lego towers, climbing the shelves to get what he wanted from the top, throwing paint on the floor causing chaos. At story time I had to wrestle him to the floor to get him to sit still, and even then he’d be calling things out and distracting the rest of the group.

Daniel was a caring, funny, quirky little boy, with a charming smile and a wicked sense of humour – though he had some strange obsessions. He had a purple teddy bear called Strum who went everywhere with him, and Daniel could not get to sleep if Strum wasn’t there. One day we left Strum behind at a motorway service station and I did a sixty mile round trip to retrieve him, because I knew what a nightmare bedtime would be without him! For a while Daniel was also obsessed with Only Fools and Horses. He could recite some of the episodes word for word – which was fine until the day he told a friend to “Shut up, you tart!” I was mortified.

Daniel Thompson

Daniel Thompson

But there was a darker side to Daniel too. He couldn’t concentrate on anything for very long and he seemed to drift off into his own little world at times. At meal times I’d have to remind him he was meant to be eating as his fork would stop halfway between the plate and his mouth, and in the mornings I’d leave him to get dressed and come back to find him in his room, one leg in and one leg out of his trousers because some toy or game had caught his attention. But the worst thing was the tantrums. Like Jekyll and Hyde, the smallest thing would set him off and he would turn into a mini Incredible Hulk, lashing out at anyone or anything that got in his way. He’d have several meltdowns a day and they could last for hours. Our home was full of holes in the walls and my daughter and I were constantly covered in bruises.

Daniel started at nursery but he didn’t seem to fit in with the other children, somehow he wasn’t in sync with them, and his domineering personality caused problems. At the end of the year, the teacher recommended I see my doctor because she felt there was more going on than normal toddler tantrums, and I agreed. The GP referred us to a paediatrician who said Daniel was “borderline ADHD” – which meant nothing, really.

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Edinburgh Woollen Mill Fashion Show

IMGP6723 mainEdinburgh Woollen Mill host a fashion show for the charity – with Cerebra staff as the models!

The people of Carmarthen were treated to a fashion show by the town’s Edinburgh Woollen Mill store on 7th October.

The evening was coordinated by the store’s manager Tracey Moore and Cerebra Community Fundraising Officer Allyson Silverthorne and treated eager observers to a preview of EWM’s autumn collection of clothing.

Several members of Cerebra staff took part in the event, strutting their stuff on the catwalk along with staff from EWM. Each budding model had three outfits to show off ranging from smart to casual and Allyson even got to wear clothes from the new Christmas range.

As well as having entertainment for the evening, guests were also treated to cakes and a raffle, prizes for which were generously donated.

Allyson said: “I would like to say a big thank you to everyone who attended on the day and to everyone who helped to organise the event. We raised £88 for Cerebra and also helped to raise awareness of our charity. A big thank you to Father Pious who allowed us to use St Mary’s Church Hall.”

Nursery Children Become Super Fundraisers

elliott bennett chequeChildren and staff at nursery in Dorset dress up to raise money for Cerebra.

We would like to say a big thank you to staff, parents and children at Scallywags Nursery in Dorset for raising a fantastic £270 for Cerebra.

The children at the nursery had a great time dressing as superheroes and princesses to raise the funds for us.

The cheque was collected by Cerebra Ambassador Chris Bennett whose son Elliott attends the nursery.

Chris is extremely proud of Elliott, who has cerebral palsy.

He said: “We don’t know how much cerebral palsy will affect Elliott’s life, I found it very hard to come to terms with Elliott’s diagnosis but he is working so hard and making his own special journey in life.”

Child of Courage

Josh113 year old Joshua Nurse has been nominated for a Child of Courage award.

We are thrilled that Josh has been nominated for the Child of Courage Award as part of the Carmarthen Journal’s annual Community Hero Awards. The winner will be announced at a ceremony on 26th September 2014.

Josh was born with a condition called Agenesis of the Corpus Callosum, a rare condition.  It means that Josh is missing all the connective tissue that links the right and left hemispheres of his brain, which has resulted in Josh having severe learning disabilities.  He has poor concentration and can be easily distracted, has problems with balance that can often make him sick and, as he’s gotten older, has developed more severe autistic tendencies.

It took a long time before it was recognised that Josh had a problem, but when Josh was finally diagnosed his parents didn’t know where to turn – “Eventually the doctor said ‘your child will be severely disabled.  We came out of the hospital in one hell of a state. But we learned very quickly that we had to cope somehow.”

Josh’s family got in touch with Cerebra and we’ve been there for the Nurse family throughout Josh’s life with advice, support and information. Our grants scheme helped to pay for special sensory toys for Josh to aid and improve his development as well as a touch screen computer; the family have also stayed at our holiday home, Vallecchia, in Pembrokeshire.

Josh has also been a great help to the charity when we’ve needed him – he has drawn the winning tickets in our summer and winter raffles, presented cheques to our lottery winners and posed for photos for charity publicity. Some of you may recognise Josh who helped us celebrate our 10th birthday a few years ago. He is such a pleasure to be with and he has touched the hearts of everyone who has met him.

Josh’s mum Julie and dad Darriel, as well as the rest of the family, have worked hard to give Josh a full and rewarding life and Josh is a credit to them. Josh needs to be kept active and to have a routine that he is familiar with and has a team of people who help do just that – through school, support groups and respite care.

Although he’s limited with what exercise he can do, he enjoys being in the water and is a keen member of the Salmon Club. Josh loves music – especially dance music – and sings and dances to Calvin Harris in his room. He also gets the chance to dance at a Zumba class through school.

Josh has a great fascination with technology and likes nothing better than spending time looking at equipment in Curry’s/PC World. The staff in the Carmarthen branch have got to know Josh and earlier this year took the casing off a washing machine and covered the workings with Perspex so that Josh could spend a happy few hours working out where all the wires and pipes went!

Life has been even more tough for Josh in recent times as his mum and dad have both battled with ill health. Darriel has endured 5 spinal operation, which have all failed, leaving him in continuous pain and his mum Julie has been receiving treatment for a brain tumour. On top of this Josh is making the difficult transition to teenage years and secondary school, where he has settled in well.

All of these circumstances and uncertainties would be difficult for any child but for Josh, who relies on routine and stability, it has been extra hard. He is a sensitive, loving boy who is coping really well and is determined to enjoy his life despite his difficulties.

The whole family are a pleasure to know and everyone at Cerebra is is so proud of Josh who shows such great courage in overcoming the problems that he faces. We are keeping our fingers crossed for Josh at  the ceremony on Friday – we’ll let you know how he gets on.

Minimising the effects of additional learning needs: Part 1

The first in a four part series discussing parents’ common worries about education with special or additional needs.

Much is written about systems for identifying and meeting the educational needs of children with the most severe disabilities and learning difficulties, particularly at the moment with the new system in England.

However, many more children have additional / special educational needs without being at the greatest / most complex level calling for a Statement, Education Health and Care Plan (new, in England) or Co-ordinated Support plan (in Scotland).  This is the first in a series of articles about the support for this larger group of children. Each article will deal with a common worry parents have about their child’s education when they have special or additional needs.

Q.  “If they are not at the greatest level, will my child’s additional needs be met at school”

A.  It is true that in many ways, schools deal with special / additional needs informally.  However the legislation, guidance and codes of practice cover all children with additional learning needs and not only those needing the most concentrated levels of support.  Educational codes of practice are devolved, so that each area of the UK now follows a different code, but the principles followed in each one are similar.

England now has the SEND code of practice 2014, under which children not needing the most concentrated level are given “Settings-based SEN Support”. Under SEND, compared with the previous code in England, there is more of a continuum with the approach that is expected for all children, to identify and deal with anything that is reducing their potential benefit from education.  SEN Support also now applies to young people aged 16-25 and can begin, theoretically, at age 0.  The statutory guidance states the following, and this includes children who are currently on “Action” or “Action Plus” levels of support:  “The legal definition of SEN has not changed so that no child or young person should lose their support simply because the system is changing.  Special educational provision should continue for children and young people who need it because they need educational provision that is additional to or different from, that made generally for others of the same age in mainstream settings. It may change only if:

  • a child or young person’s learning needs have changed, or
  • the educational setting has changed its universal offer” (Dept for Education, 2014).

Parents of children needing Settings-based SEN Support should be involved in “regular review and discussion” of their child’s progress.  The class teacher is a key person in identifying and supporting children at this level, and the Special Educational Needs Coordinator (SENCO) remains another point of contact for parents.  Whereas, for some children, the changeover from Statements (under the previous code) to EHC Plans (under this code) may take until 2018, the changeover from Action and Action Plus to SEN Support is expected to be achieved by September 2015.  Sections 8.5 onwards of the statutory guidelines (Dept for Education, 2014) describe how a similar system now has to be introduced into post-16 institutions as well.  The complete timetable is in Annex A of the guidelines.

education2The approach to learning needs at every level is described in the new code as a graduated and continuous process of “assess, plan, do, review”.

Each local authority in England publishes a “local offer” describing what SEND-related services are available in the area and how to access them.  At the time of writing, these offers are in a state of transition to the new system.  Some currently mention assessment for EHC Plans without mentioning Settings-based SEN Support, however as above, both are part of the new system.  Each school also has a special educational needs policy / “school offer”.

The new code suggests to me that potentially, there could also be more integration with non-educational services for children receiving Settings-based SEN Support, though not in the same manner as for those with EHC Plans.

In Scotland, the Code of Practice is “Supporting Children’s Learning” (2010), which applies between ages 3 and 18 years.  In this there is a staged approach to additional needs, moving through the support types and levels that might be required in response to concerns expressed by parents, teachers or others, broadly considering first the least extra support that might be needed.  Only some pupils with additional needs will prove to be at the level where a formal Co-ordinated Support Plan (which was the successor to a “Record of Needs”) is required, but this methodology should also identify and seek to meet the needs of the others.  Local authorities go into more detail for parents, for example the Children In the Highlands Information Point,  Scotland also has the concept of the Universal Child’s Plan, which is triggered when a child’s learning needs demand more than ordinary classroom teaching techniques (which do encompass additional needs to some extent), so that other services and an Individualised Education Programme (IEP) become involved.

Northern Ireland has the Code of Practice on the Identification and Assessment of Special Educational Needs (which also includes instructions for provision.  Dept of Education, Northern Ireland, 1998-2005).  Northern Ireland and Wales still use the three-level system of Action, Action Plus and Statementing levels of support.

The equivalent code in Wales (Welsh Assembly Government, 2004) approaches assessment and provision along similar lines, described as a “graduated response”, also like the other codes, stressing that any difficulties the child has should be picked up early.  The codes describe when Action and Action Plus are applicable and how assessment, provision etc. should occur, and they apply between the age of 3 years (and the time leading up to that), and an age between 16 and 19+ years.  Anyone with concerns about what provision should be made for a child can find useful details in the sections of these two codes and their associated documents relating to the applicable age-range (early years, primary school age or secondary school age.  There are also sections on transition from school age).

In all parts of the UK, there are local authority / board SEN specialists who can be called upon by schools to assist in respect of identification and provision.

Where there has always been a grey area, is in defining what are “significant” learning needs.  To many parents any learning need, or barrier to learning is “significant”, whereas there are schools and/or individual teachers who consider there are “no problems” beyond a threshold that is not necessarily defined.  For children, consistent difficulties and fallings behind can lead to frustration, lowered self-esteem, further educational difficulties and relationship issues with peers, however educationalists expect children to learn at different speeds and to have different learning styles, strengths and weaknesses, so when does this become “significant”?  In principle, the statutory codes and guidelines would seem to agree that any learning need should be picked up and supported as early as possible, yet they still use the term “significant” in some places.  In Scotland, the code and guidance include a discussion of the term in the light of Tribunal and Court decisions, and gives some examples (Scottish Government, 2010).


Code of practice on the identification and assessment of special educational needs, and supplement (1998-2005), (Dept of Education, Northern Ireland).

Dept for Education (2014, England), Transition to the new 0 to 25 special educational needs and disability system. Statutory guidance for local authorities and organisations providing services to children and young people with SEN.

SEND code of practice: 0 to 25 years (2014), (Dept for Education and Dept of Health, England).

Special educational needs code of practice for Wales (2004), (Welsh Assembly Government).

Supporting children’s learning (2010, revised edition), Scottish Government.

Books in the library covering special needs in general

library-booksThese books don’t quite fit into any of the specific categories based on diagnoses, so they are listed in the section of the library list called ‘Learning Disabilities and Special Needs in general’.
There are some pretty good books amongst them, which you might not come across when you are looking in for books in the other sections

  • L6198  When the Bough Breaks: a mother’s story by Julia Hollander
  • L6213  Special Educational Needs Inclusion and Diversity by Norah Frederickson
  • L6245  Children with Complex and Continuing Health Needs: experiences of children families and care staff by Jacqui Hewitt-Taylor
  • L6249  Is That My Child? Exploding myths of dyspraxia, dysplexia, tourette syndrome of childhood, ADD, ADHD and OCD by Robin Pauc
  • L6257  Mothering Special Needs: a different maternal journey by Anna Karin Kingston
  • L6276  Understanding Your Special Needs Grandchild by Clare Jones
  • L6278  A Practical Guide to Equal Opportunities by Hyacinth Malik
  • L6314  Building a Joyful Life with your Child who has special needs by Nancy Whiteman
  • L6372  Disabled Children Living Away From Home in Foster Care and Residential Settings by Claire Burns
  • L6488  If Only I’d Known That a Year Ago by RADAR
  • L6493  Letters to the Home Front: positive thoughts and ideas for parents bringing up children with developmental disabilities by John Clements
  • L6500  Chicken Soup for the Soul: children with special needs by Jack Canfield
  • L6535  Special Educational Needs: a parents’ guide by Antonia Chitty
  • L6536  Personalisation in Practice: supporting young people with disabilities through the transition to adulthood
  • L6537  Identifying Special Needs: a checklist for profiling individual differences
  • L6555  Different Dads: father’s stories of parenting disabled children

For more information on our library and to download a full library list please see our library pages.

Guides for Parents

We have published a series of guides for parents on a range of topics that aim to provide lots of useful information on how to get the help and support you need. We hope that our guides will help families understand and navigate the frameworks in place to ensure that children’s education, health and social care needs are met, as well as providing advice on practical matters such as family finances.

Some of our most popular resources, according to parents who responded to a recent online survey, include the guides on Education, Parent/Carers’ rights, Money Matters and Social Care.


All children have the right to an education, but some children will need additional support to enable them to learn. Our Education guide summarises the support that might be available to your child both before s/he reaches school age and during his/her time at school. Topics include special educational needs, discrimination and school transport. We’ll shortly be publishing a new guide which explains the recent special educational needs reforms in England.

Parent / Carers’ rights

This guide explains the different sources of help available to parents in their role as carers. It explains your rights, for example, to ask for an assessment of your own needs and to have your views taken into account by the local authority when it is carrying out an assessment of your child’s needs.

Money Matters

Parents who want to know what financial help may be available to them and how to manage their children’s finances can refer to this guide for more information. It gives an overview of the main sources of financial help available for parents and for disabled young people aged 16 and over who may be entitled to help in their own right.

Social Care, Housing and Health

This guide gives information on the responsibilities of NHS bodies and local authorities to provide health and social care, as well as accommodation, for disabled children and their families.

View our full range of guides, briefings and infographics here.

We regularly review our guides to make sure they reflect the latest developments and we’re keen to hear your views about how we could improve on the layout and content to make sure our guides continue to be as relevant and useful as possible.

Do you have any views or comments about our guides? Are there any other topics that you would like us to include in our guides? If so, we’d be interested to hear from you. Please get in touch with us via the feedback forms available on our website for each guide or contact us at

Towards a real impact on prenatal brain damage

Brain tractography

Brain tractography

We take a look at the pioneering work of the Cerebra Foetal Research Project at the University of Barcelona.

The human brain undergoes a long phase of development that starts in foetal life and ends much later in life. The most critical steps take place in the mother’s womb and during the first two years of life. Millions of neurons are being generated every day and start establishing connections, determining how our brain is going to work for the rest of our lives. This extremely complex process is governed by information contained in our genes, but also by the environment. Any disturbance may have a critical influence in the delicate sequence of events regulated in the genetic blueprint.

One in ten children has neurodevelopmental problems. It is estimated that about two thirds of these are of prenatal origin and in most instances, the problem occurred during foetal life, long before labour started. Severe forms of brain damage affect about 2/1000 of all new-borns and are expressed by serious complications including cerebral palsy and/or intellectual disability.

The vast majority of brain problems however, are manifested as subtle developmental disturbances. These cases are not associated with overt brain injury, but with brain reorganisation and are expressed mainly as alterations in cognition, thus affecting behaviour, social relations, neuromuscular regulation, learning and memory. The impact of these ‘milder’ neurological alterations in the quality of life cannot be overemphasized. Because they are of milder nature, they mostly go unnoticed in early months and even years of life.


Identification of foetal brain injury/reorganisation as early as possible is a major opportunity for public health. The problem involves thousands of families yearly. For the first two years of life, the growing brain has enough plasticity (the brain’s ability to respond and remodel itself) to bring back to normal deviations that occurred during intrauterine life. This has been defined as the ‘window of opportunity’ to revert the effects of in utero diseases on foetal programming.

Unfortunately, early diagnosis is still not possible in a substantial majority of cases. Much is still unknown about how a developing foetal brain adapts to and eventually deteriorates under adverse conditions. We need to improve the understanding and current diagnostic means of perinatal brain injury if we hope to start early interventions.

The list of foetal problems potentially leading to brain injury is large, but the majority of cases are caused by prematurity and intrauterine growth restriction (IUGR). Over the last 10 years the team in Barcelona has worked on both, but have focused more on IUGR as there was much less known about this disease and the opportunities for public health were greater.

Intrauterine Growth Restriction & Prematurity

IUGR is normally the consequence of placental insufficiency. The placenta is the organ that the foetus uses to obtain nutrients and oxygen from the mother. In a proportion of pregnancies, for a variety of reasons, the placenta does not grow properly and is not able to satisfy the enormous requirements of the foetus. In these circumstances, the ‘genetic program’ can not build the brain in the way it was supposed to, so that reprogramming, and consequently reorganization, must occur.

In prematurity, which is typically characterised by intrauterine infection, the baby is exposed to the ‘outer world’ when its brain is still in the critical construction phase. Changes in temperature, feeding, sound and light have, as of yet, unknown effects on the developing brain.

Cerebra Foetal Research Programme

The Cerebra Foetal Research Programme incorporates a variety of projects that aim to diagnose abnormal brain development in foetuses and new-borns, and implement specific interventions to prevent, or reduce its impact. The main interrelated research lines cover problems of maternal, foetal and neonatal health, and are summarised below.

Brain Connectivity

The main objective of this research line is to develop a quantitative imaging biomarker for early diagnosis of neurodevelopmental disorders based on the imaging of the brain connectivity (the way neurons connect the different brain areas). To accomplish that, different techniques of Magnetic Resonance Imaging (MRI) are being used, including diffusion, functional and anatomical MRI.

Neurological Programming (Microstructure and Metabolomics)

In this research line, the group focuses on identifying the structural (the way neurons and other cells are organised within the brain microscopically) and metabolic differences in the brain of foetuses and children that are diagnosed with growth restriction and are at risk of developing neurodevelopmental problems. This requires the development of new mathematical algorithms that will allow the interpretation of subtle brain changes that could be used as new biomarkers.

Diagnosis and Therapy in IUGR

This line of research aims to identify before birth, which babies with growth problems will have abnormal neurodevelopment. The majority of babies considered small in utero are naturally smaller and will face no future problems. However, a proportion of babies are born small due to problems with the placenta. These babies face neurobehavioral problems at birth that persist into childhood.

The Foetal Medicine Research Centre has developed non-invasive methods to measure how much blood reaches the brain, and have described that this is a strong marker of increased risk for neurodevelopmental problems. The prenatal identification of babies at risk is especially important because it would allow us to take preventive measures during pregnancy and early childhood.


The main objective of this line of research on prematurity is to advance our knowledge of the causes of preterm birth. Despite improvements in managing pregnancy, prematurity is still a common outcome and is the leading cause of perinatal morbidity and mortality. It is crucial to understand what triggers premature delivery so that we can prevent it and improve perinatal outcomes.

The Foetal Medicine Research Centre is trying to refine detection of patients at risk of preterm delivery as well as optimise the management and care of neonatal patients in the clinical level. The group hopes that the development of this research line will minimise needless intervention and over-treatment, streamline patient management and achieve the best possible results.


The main objective of the research centre is to reduce the number of instances of adverse neurodevelopment in children and adults and make a difference in their lives. An important contribution of the team to that extent is the implementation of their research findings into clinical practice through their involvement in the writing of clinical national and international guidelines.

The group is also committed to sharing and spreading their knowledge in maternal-foetal medicine with the general public. They have launched Inatal, the first social website directly related to a medical referral centre. Inatal is aimed to pregnant women with no pathologies but doubts and concerns, and provides objective, useful information about health issues while encouraging the active participation of its users.

In the Cerebra research programme 2008-2013, a multidisciplinary research programme for the evaluation of diagnostic techniques and intervention measures for prenatal brain damage using growth restriction as a model, the Foetal Medicine Research Centre has achieved significant advances in our understanding of brain injury of prenatal origin. They demonstrated that even milder forms of foetal growth restriction are associated with a high risk of neurological damage, improved current understanding and changed clinical management of one of the major cause of neurodevelopmental problems in children. However, as usual in research, discoveries have led to new questions, challenges and ideas for better ways to improve even further towards a real reduction in the number and magnitude of neurodevelopmental problems of foetal origin.

The next six years

Cerebra are delighted to be in a position to provide funding for the Foetal Medicine Research Centre at the University of Barcelona for a further 6 years (between 2014 and 2019) to continue the innovative and influential work in the area of perinatal brain damage.

Three Peaks Trekkers Set Off

The three peaks team set off

The three peaks team set off

Cerebra’s Three Peaks Trek team has set off.

The morning of Monday the 18th of August saw Cerebra’s Three Peaks Trek team begin their epic journey to scale Pen Y Fan, Cadair Idris and Snowdon.

The team, Bran Bucca, Ben Jones, Jamie Pitman, Lee Herbert and Helen Woolley, will be walking all the way to their first peak and covering the distance between each one on foot, clocking an enormous 175 miles by the 27th of August.

So far their campaign has raised over £35,000 for children with neurological conditions and they’ll be collecting on the way.

The group have strong motivations for undertaking the challenge. Jamie Pitman said “My sister has cerebral palsy and the work Cerebra does to support children and families is amazing”. All of the walkers are excited about the challenge: “It will be a real test of endurance and bring a great sense of achievement,” said team leader Bran Bucca.

You can support the walkers by visiting their JustGiving page or by getting in touch with Cerebra on 01267 244221. You can also follow their progress on Cerebra’s Facebook and Twitter pages, as well as our website.

Big Lottery Fund Boosts Cerebra’s Conference

The Big Lottery Fund has given a grant towards Cerebra’s 2014 annual conference.

Big Lottery Fund logo

Big Lottery Fund logo

Everyone at Cerebra would like to say a huge thank you to the Big Lottery Fund, who have provided a grant of £9,900 towards the charity’s annual conference.

This year’s conference, taking place at the Royal Society of Medicine in London on Tuesday the 7th of October, focuses on ‘Problem solving’: accessing decent services and support for children with complex needs and their families.

This is a one day conference providing academics, practitioners, educators and carers with up to date, evidence-based information on the commonly encountered barriers experienced by disabled children and their families in accessing their legal rights and practical approaches to breaking these barriers down.

You can find out more about this year’s conference, along with previous conferences, by clicking here.

Thanks to this grant we are able to offer a reduced rate for families and students, and extend our early bird offer to the 31st of August. To book your place click here.

The Big Lottery Fund gives out millions of pounds every year to good causes, including community groups and projects that improve health, education and the environment. You can find out more about the Big Lottery Fund on their website.