Champions for Childhood Epilepsy Campaign

A report on the NCYPE Epilepsy Champions

pilot scheme in schools

June 2010

Registered Charity No. 311877

The National Centre for Young People with Epilepsy (NCYPE)

The National Centre for Young People with Epilepsy (NCYPE) is a national charity providing education, medical and support services for children and young people with epilepsy and other neurological conditions.

We work in partnership with Great Ormond Street Hospital for Children NHS Trust and the University College London’s Institute of Child Health.

The NCYPE’s campus in Lingfield, Surrey includes residential and day provision at St Piers School, the NCYPE Further Education College and the new world class Neville Childhood Epilepsy Centre, which offers a range of diagnostic, assessment and rehabilitation services. As well as coordinating a paediatric epilepsy research programme, the NCYPE has a Childhood Epilepsy Information Service which provides epilepsy training and support for teachers, health professionals and families and a helpline on 01342 831342 (Mon-Fri 9am-1pm). A Sure Start Children’s Centre for all local families is also based on the NCYPE campus.

The NCYPE Champions for Childhood Epilepsy Campaign

In 2008 the NCYPE took the decision to actively campaign for improved services for children and young people with epilepsy. The Champions for Childhood Epilepsy Campaign (initially known as the Better Futures Campaign) is pressing politicians, policymakers and practitioners across health and education services to provide better support for these young people. They are often faced with the ‘triple whammy’ effect of the condition itself, poor health and educational support and the social stigma still (wrongly) attached to epilepsy.

2

3

Foreword

by NCYPE Chief Executive, David Ford

At The National Centre for Young People with Epilepsy we have over 100 years of experience in the care and education of young people with epilepsy.

However, as a national charity we also work to support the 60,000 under 18s with epilepsy who are at schools and colleges across the UK. Research findings on the effects of epilepsy and the level of support provided by the both the NHS and schools show that these young people often get a raw deal. Families from across the UK are increasingly looking to the NCYPE for help and advice because their child’s school is struggling to provide the right support.

For this reason, we created the Champions for Childhood Epilepsy Campaign to press local authorities and the NHS for better health and education services for young people with epilepsy.

Part of the campaign was the NCYPE Epilepsy Champions school pilot project, developed in partnership with the Tandridge Confederation and 21 schools in Surrey and West Sussex. This was designed to test a better model of support for pupils with epilepsy and to gain Government support for this approach.

The results of the first phase of the pilot are set out on this report. The model offers a clear way forward for schools to enable them to provide proper support for pupils with epilepsy. A copy of this report is being sent to every Local Education Authority in the UK.

We now know that signing up to the Champions for Childhood Epilepsy Campaign model works and offers a positive way forward for schools to ensure that every child, including those with epilepsy, really does matter.

I urge you to join our campaign and implement our Champions for Childhood Epilepsy action plan in your school.

David Ford

“This is knowledge that everyone working with children should have.”

Epilepsy Champion

4

The three steps participating schools took were to ;

1. Nominate a staff member to be their Epilepsy Champion and receive training on epilepsy and education at the NCYPE.

2. Ensure Epilepsy Champions returned to their schools to review practice with colleagues in light of their training and the campaign’s Education Action Plan (Appendix B).

3. Ask the Champions to review the school’s policy framework to ensure the good practice was embedded and sustainable for the longer term.

Executive Summary

About children, young people and epilepsy

• There are approximately 60,000 in the UK.

• The majority will be educated in mainstream schools.

• 30,000 may be failing to achieving their educational potential.10

• On average, there is one child with epilepsy in every primary school and five in every secondary school.

• It is the most common serious neurological condition in childhood.

• It is as common as diabetes in this age group.

• 16% (age 5-15) have a defined psychiatric disorder such as depression (4.3% of peers).16

• 74% of school staff say they would benefit from more knowledge about epilepsy.11

• The rate of misdiagnosis could be up to 40%.2

• They have a poorer quality of life than children with other long-term conditions like asthma.3

The NCYPE Campaign

The Champions for Childhood Epilepsy Campaign is part of the work of The National Centre for Young People with Epilepsy (NCYPE), the national charity for children with epilepsy. The Campaign aims to work in collaboration with those providing services to develop affordable, achievable, and effective models of good practice that can improve outcomes for young people with epilepsy across the UK.

The education pilot work developed good practice models in collaboration with 21 schools local to the NCYPE’s campus in Lingfield, Surrey. The project trained 31 teaching and support staff to become Epilepsy Champions. It was conducted with a range of schools, (primary, secondary, independent, boarding, urban and rural) to ensure that a model suitable for all schools emerged. Our work covered close to 7,000 children, 51 with a diagnosis of epilepsy.

5

Need for training and support for teachers

Since the 1978 Warnock Report, children with long term conditions have increasingly been placed in mainstream schools. This has generally been a positive move for the child but has also placed significant additional responsibilities on schools and teachers.

All schools are committed to the Every Child Matters and inclusion agendas which support the placement of children with long term health conditions in mainstream schools. The NCYPE pilot work confirmed that schools and staff will often struggle to meet needs of which they are unaware.

For example, prior to the training our Epilepsy Champions reported knowing little of the impact epilepsy and epilepsy medication can have on learning, concentration, memory and alertness.See Appendix A relating to ‘Every Child Matters’ and children with epilepsy.

Outcomes?

The support, training and guidance offered by the Champions for Childhood Epilepsy Campaign allowed the pilot schools to more fully understand and therefore meet the needs of students with epilepsy.

Other outcomes include:

• Improved awareness, training and targeted monitoring of behaviour and academic progress for students with epilepsy.

• A package of materials to support all UK schools to implement best practice by developing

• Better understanding of epilepsy, learning and education

• Improved policy which supports and sustains good practice

• Increased awareness and better, more effective support for students with epilepsy

Better futures?

The Champions for Childhood Epilepsy Campaign is already making a difference. Three children with epilepsy have been referred for paediatric assessment and review, one case leading to a change of medication, with generally improved medical/educational communication and enhanced well being.

The Champions for Childhood Epilepsy Campaign model of good practice provides an affordable opportunity for all schools to improve their understanding and ensure better outcomes for all young people with epilepsy.

6

Epilepsy means someone is having recurrent seizures (sometimes called ‘fits’) where excess electrical activity in part or all of the brain sends confused messages to the rest of the body. This can lead to twitching of the limbs, stiffness, loss of consciousness or brief ‘absences’ where the brain switches off but the person appears normal. With over 40 different types of seizure, the condition can vary hugely, depending on which part of the brain is affected.

Around 60,000 children and young people under 18 in the UK have epilepsy. In most cases the condition can be controlled by anti-epileptic drugs and the young person can attend mainstream school. For some young people, seizures can cause learning problems and the medication can lead to unwanted side effects.

Added to that is the stigma which leaves many young people battling low self esteem, bullying and a lack of understanding from both peers and adults.

Support for young people with epilepsy

Services for children and young people with epilepsy too often fall short of acceptable standards. Repeated surveys, academic papers and research highlight the deficits and poor outcomes for this group.

Lack of awareness amongst professionals and the wider population surrounding the condition is common. Many do not understand the impact it can have on learning and there is an even wider lack of knowledge when it comes to issues like sudden unexpected death from epilepsy (SUDEP).

Research shows that:

1. 25% of ALL children known to UK learning disability services have a diagnosis of epilepsy17

2. They have a poorer quality of life than children with other long-term conditions3

3. The misdiagnosis rate is as high as 40%2

4. Young people are at a higher risk of SUDEP4

In addition, a 2005 survey for the charity Epilepsy Action showed 48% of parents said their child struggled to complete schoolwork due to their epilepsy and, for 31%, school attendance was affected. Just 19% of schools felt staff knowledge about epilepsy was good and 74% felt that all members of staff would benefit from knowing more about the condition.11

About epilepsy

7

Epilepsy and education – the problem

In the UK, epilepsy affects 1 in 242 young people under the age of 18, the vast majority of whom will be educated in mainstream schools. This is fully in line with the inclusion agenda which integrates children with health conditions. On average, there is one pupil with a diagnosis of epilepsy in every primary school and five in every secondary.

However, given the research and other evidence set out earlier in this report, the educational progress of each child with epilepsy needs careful monitoring . It is vital that poor academic performance does not become part of a culture of low expectation and is not allowed to go uninvestigated.

Pupils are often sent to hospital by ambulance if a seizure occurs at school or are sent home following a seizure when neither course of action may be necessary. This serves to highlight rather than normalise their condition and increases time missed from class.

Young people themselves report tiredness as a major effect of epilepsy and worry about their peers and school staff not understanding their condition including what to do when a seizure occurs.

Research findings indicate that:

1. Up to 30,000 children with epilepsy in the UK may underachieve given their IQ16

2. Sixteen percent of those aged 5-15 have an emotional disorder such as depression compared to just 4% of their peers

3. Young people with epilepsy are more likely to self-harm than any other comparable group

While schools and teachers are generally positive about the principle of inclusion, many of the school staff we worked with in the pilot confirmed that they lacked the specialist training and support needed to fully understand and therefore meet the needs of students with epilepsy.

Many of the trades unions and professional associations describe the lack of training about the impact of health conditions as one of the biggest issues for their members.

Yet, in its Managing Medicines in Schools guidance for teachers, the Department for Education (formerly the Department for Children, Schools and Families) does not even signpost that epilepsy is a condition that may cause special educational needs.

The NCYPE is determined to work in collaboration with schools to support improved outcomes for young people with epilepsy.

“I had no idea about the different types of seizure –

particularly absence seizures. I think a lot of us would not recognise

that as epilepsy without this training.” Epilepsy Champion

8

The campaign pilot

With over 100 years of experience and practical knowledge, during 2008/9 NCYPE experts drew up a list of key actions (see Appendix B) that can make a difference to educational outcomes for young people with epilepsy. That list formed the basis for a working pilot with local schools.

Between October 2009 and February 2010 the NCYPE Champions for Childhood Epilepsy Campaign pilot worked with 21 schools in East Surrey and Sussex, covering 7,000 students and 51 students with epilepsy. Following discussions with the Tandridge Confederation, a free one-day training course was developed with the NCYPE’s Childhood Epilepsy Information Service. We trained 31 teachers and members of school staff to become ‘Epilepsy Champions’. They then worked with us to refine a package of materials that can be used in schools across the UK to improve outcomes for children with epilepsy.

“I thought I knew a lot about epilepsy – I was

wrong. You don’t know what you don’t know!” Epilepsy Champion

Pre-pilot surveys

Participating schools conducted these prior to Epilepsy Champions sharing their training with colleagues.

127 forms were collected from a cross section of teaching and support staff. They found;

1. varied levels of knowledge and understanding of epilepsy but an eagerness for greater knowledge was evident in many of the comments.

2. around 60% felt it was safest to call an ambulance if a child had a seizure at school.

3. 78% felt that the Every Child Matters agenda would mean that the needs of pupils with epilepsy would be met.

4. 74% felt it was the role of teaching staff to administer emergency medication though many indicated the need for appropriate training.

5. On many other issues, including epilepsy and learning, the risk of bullying and isolation, overnight trips etc… there was a near even split of opinion.

6. Several highlighted concern about the dosage of buccal midazolam saying that all other medication in school (inhalers, epipens etc…) came in pre-measured doses. The additional responsibility of drawing up the correct dose in an emergency situation was a real concern.

9

“I had no idea about the memory losses that can be

part of epilepsy.”

The three steps of the pilot work were:

TRAINING Participating schools nominated a staff member who received Epilepsy Champion training at the NCYPE.

REVIEW The schools reviewed existing policy and practice with their Epilepsy Champion in the light of the training and the NCYPE Education Action Plan

POLICY Schools produced their own policy documents relating to epilepsy, setting out a model of good practice to be followed within that school.

The Epilepsy Champions pilot did not develop a pre-written model epilepsy policy because the overriding campaign objective ‘to improve outcomes for young people with epilepsy’ is best served when schools fully engage in the process and tailor the results for their own school.

The process of policy review is in itself a learning opportunity, giving staff greater understanding of epilepsy, as well as ownership of the policy and its purpose.

“I so enjoyed the training, I can’t stop talking about

it. I thought I knew enough about epilepsy but I was so

very wrong.” Epilepsy Champion

Staff who trained as Epilepsy Champions included:

3 Head Teachers

2 Deputy Heads

3 SENCOs

8 Classroom teachers

6 Classroom & other support staff

3 Welfare staff

6 Nursing / care staff

The Epilepsy Champion role is to act as a resource for the whole school. No one can be expert after one day of training but they developed an enhanced level of awareness and understanding which can provide a source of guidance/advice for staff. They also maintain links with the NCYPE and access further training, advice and support for colleagues as necessary.

The training covered:

• epilepsy and types of seizures

• the effects of epilepsy on memory, learning and behaviour

• epilepsy medication and side effects

• stigma and bullying

• dealing with seizures at school

• the importance of liaison with parents and health professionals

• strategies to support pupils with epilepsy

Training was extremely well received with feedback ratings for the two training days showing 86% and 90% satisfaction.

Following training, Epilepsy Champions returned to their schools to review existing policy documents and see how the Champions for Childhood Epilepsy Campaign Education Action Plan could be incorporated into their schools policy framework.

A variety of policies emerged as each school developed a model that fitted within their schools existing policy framework. Our Epilepsy Champions consulted with colleagues and governors in drawing up policy, providing opportunities for greater awareness across the school community. Some schools drafted a ‘stand alone’ epilepsy policy, another wrote a ‘signposting’ policy which flagged up the existing policies relevant to epilepsy. Most importantly, the resulting policies are appropriate for their settings and clearly understood by staff.

Epilepsy Champions

“All the sessions were very informative, especially strategies to support the children with epilepsy in my class. I have learnt an enormous

amount in one day.” Comments from Epilepsy Champions

on the training days

10

11

1. A recurring request was further training opportunities for all staff. The NCYPE National Schools Programme will enable us to meet some of these training needs in the future and the development of distance learning packages will be a central focus of work in moving the campaign forward.

2. In many schools, the Champions for Childhood Epilepsy Campaign has encouraged epilepsy awareness through school assemblies, newsletters, notice boards, participation in the international ‘Purple Day’ for epilepsy awareness and other annual events.

“We have a special assembly about Epilepsy for Purple Day and have decorated boards up around the school. We have had lots of positive

comments on these from staff, students and parents. We’ve also asked a few of the students who have epilepsy if they would

like to explain to the others how it affects them, what they like and how they feel when they’re recovering - this idea came from talking

to the NCYPE students after the course…who better to answer these questions than the person who experiences it?”

Epilepsy Champion

“As a team, we wouldn’t feel at all threatened by this sort of training, we welcome it. Our caseloads mean that we can provide regular training

mornings on emergency medications for all the main health conditions but we are not based on site and not expert in epilepsy and education.”

School Nurse with Epilepsy Champion training

3. The greater awareness has resulted in the referral of three children from the pilot schools to paedatricians for medical assessment. If even one of these referrals leads to a new diagnosis of epilepsy, the impact for that child is significant. If replicated across the UK, this could mean 1,359 children would receive the diagnosis, understanding, treatment, and support they need to fulfil their individual potentials as a direct result of the Champions for Childhood Epilepsy Campaign.

4. Many participating schools felt that support is not automatically made available to them in managing young people with epilepsy at school. Much depends on goodwill and good relations with the parents.

5. School nurses were highly valued but not seen as experts in epilepsy by staff and not available for administering emergency medication in the majority of schools.

Additional Learning Points

12

6. School nurses felt they were ‘not expert’ and that huge caseloads left them unable to provide support beyond morning sessions covering emergency medications for asthma, anaphylaxis, epilepsy and diabetes.

7. Support for children with some other medical conditions was felt to be better than that afforded to children with epilepsy. The model of diabetes was raised. Despite near identical prevalence, children with diabetes were often supported by a specialist nurse who visited school with advice, training and support and was available by phone in school hours. Children with epilepsy have nothing like this available to them.

“We tend to have roughly the same number of students with diabetes as epilepsy at any one time and whilst the support in school from the local

NHS is fantastic for diabetes, it is non-existent for epilepsy.”

Epilepsy Champion – Secondary School

13

The work has resulted in the Champions for Childhood Epilepsy Campaign model of good practice and a package of materials that can support schools across the UK in developing…

1. a better understanding of the implications of epilepsy for education

2. improved policy frameworks which can sustain enhance practice

3. increased levels of awareness and better, more effective support

The gaps in services for children with epilepsy are leading to poor outcomes for too many young people in the UK every year.

Improving the situation and ‘plugging the gaps’ in existing services is neither expensive nor complex. The Epilepsy Champions pilot project found a great willingness and enthusiasm from schools and teachers to improve their knowledge and skills in this area.

This pilot work shows clearly that the NCYPE’s wider Champions for Childhood Epilepsy Campaign is needed because;

1. There is no routine provision of the support and training necessary for schools to understand and plan adequately for a pupil with epilepsy.

2. Even excellent local health services struggle to provide outreach support to schools and current financial pressures mean that is unlikely to change.

3. The campaign pilot demonstrates we can address this gap effectively and affordably.

4. Failure to facilitate good home/health/school communication disadvantages young people with epilepsy. Trained Epilepsy Champions have the knowledge and confidence to understand its importance and instigate better information sharing.12

Outcomes

Conclusions

“We are also now in direct contact with consultants so if there are any concerns we can make contact straight away. Our Epilepsy Champion and

one of the care staff went to London the other week and had a meeting with one of them. It was really useful as we could give them details that the

parents could not. This has resulted in a change of medication.” Epilepsy Champion – secondary school

14

5. The Champions for Childhood Epilepsy Campaign improves understanding of the potential impact that both epilepsy and epilepsy medication have on learning and encourages a more pro-active approach to monitoring of students with epilepsy.

6. Models of good practice exist for other conditions, notably diabetes, and could therefore be replicated.

7. School nurses offer all the support and training they can within extremely busy caseloads. However, they are not epilepsy specialists and are rarely ‘on-site’ so unable to take responsibility for emergency medication.

8. Schools are able to get credit for their involvement with the campaign pilot from Ofsted and many schools have included it in their Ofsted Self Evaluation Form (SEF).

For everyone

The Champions for Childhood Epilepsy model of good practice for the management of students with epilepsy in mainstream education should be rolled out to schools across the UK.

For schools and teachers

1. Schools should adopt the Champions for Childhood Epilepsy Campaign model to give structure, focus, training and enhanced understanding to the care and education they provide for students with epilepsy.

2. All schools should hold details of pupils with a diagnosis of epilepsy in order to ensure their progress is carefully monitored and any changes or problems are identified and addressed early.

3. Schools should identify at least one person who is prepared to receive training and take a lead/coordinating role as the school Epilepsy Champion.

For policymakers

4. Policy makers should accept that, for children with epilepsy, the Every Child Matters agenda is not currently an all inclusive one.

5. Children’s Trusts should consider their responsibilities under the 2004 Children Act in relation to ensuring that the Every Child Matters agenda applies fully to children with epilepsy.

“Other students with particular needs are audited so students with

epilepsy should be included to highlight any gaps and assistance requires. These audits should be done twice in an academic year.” Epilepsy Champion – Secondary School

Key Recommendations

15

6. Those providing both health and education services must understand that clear, regular liaison and mutual support is a fundamental necessity for the delivery of best practice in either setting and a responsibility under the Children Act 2004.

7. The Department for Education, in its Managing Medicines in School guidance, should alert schools to the fact that epilepsy is not just a health condition but a condition which may cause special educational needs.

8. Those responsible for teacher education and training must recognise the training needs of teachers in supporting young people with epilepsy.

9. The potential impacts of epilepsy and epilepsy medication on learning must be clearly understood both by those responsible for inspecting schools and those monitoring performance.

For health service providers

10. Trusts should review the services they provide/commission to young people with epilepsy in light of the Champions for Childhood Epilepsy Campaign Health Action Plan (see Appendix B).

11. NICE Clinical Guideline 20, while not compulsory, provides an excellent model for childhood epilepsy services.15 Failure to implement this guidance is affecting the quality of care, outcomes for children with epilepsy and is placing health authorities at significant risk of litigation.

12. Trusts should promote the prescribing of the new pre-measured dosage of buccal midazolam* to support teaching and school staff when administering emergency medication.

13. All health trusts should have one key person who can oversee the quality of services commissioned/provided to support young people with epilepsy in all aspects of their lives including education.

*unlicensed

16

The ‘Every Child Matters’ agenda and children with epilepsy

The strategic aim of the Every Child Matters agenda is to provide a framework for a child centred, holistic approach to providing children’s services. The 2004 Children Act underpins the Every Child Matters agenda and sets out the legislative framework to address the well-being of all children and young people up to the age of 19.

It is an agenda relevant to everyone providing services to children and puts on all authorities a legal ‘duty to cooperate’ to improve the well-being of children. Research tells us that effective collaboration between health and education should be an essential part – not a luxury add on - of the good management of children with epilepsy.

The NCYPE believes that it cannot currently be said that all children with epilepsy are adequately supported in achieving the five Every Child Matters aims. The information provided in this report highlights some of the shortcomings.

The Every Child Matters agenda sets out five key strands of entitlement for all children to receive the support they need to:

1. be healthy

2. stay safe

3. enjoy and achieve

4. make a positive contribution

5. achieve economic well-being

Yet the evidence shows that children with epilepsy are not fully supported in achieving these aims. For example;

Be healthy – a misdiagnosis rate of up to 40%2,6 and less than 50% of children who could be seizure free actually are5

Stay safe – over half the epilepsy related deaths in childhood are possibly or potentially avoidable4

Enjoy and achieve – 16.3% (compared to 4.3% of peers) have a psychological condition such as depression16 and nearly 50% fail to reach the educational level predicted by their IQ10

Appendix A

Make a positive – clearly poor seizure control in combination with academic contribution underachievement will affect a person’s ability to ‘make a positive

contribution’

Achieve economic – research indicates that academic underachievement has a significant well-being impact on economic well-being The Champions for Childhood Epilepsy Campaign focuses on addressing these issues in collaboration with health and education professionals.

17

18

Health services can go the extra MILE for young people with epilepsy by:

Measuring • Commissioners must know the number of young people with epilepsy in their area1

• Commissioners must know what level of resources they have in place

• Commissioners must know how long young people with epilepsy are waiting for initial appointments, diagnosis, treatment and tertiary assessment7

Including and informing children, parents or carers • Commissioners must know what young people with epilepsy and their parents think

about services

• Children, young people and their parents/carers need easy access to high quality information and advice material about epilepsy

Looking after the ‘whole’ child • Children and young people with epilepsy and their parents/carers must have easy

access to high quality multi-disciplinary services such as speech and language therapy and psychology

Ensuring services meet national recommended guidelines • Commissioners must adopt an easy to use, efficient process for referring children

and young people to specialist epilepsy services

• Commissioners must have one or more care pathway that ensure all young people with epilepsy are seen by paediatricians with training and expertise in the epilepsies

• All children and young people with epilepsy must be offered a care plan, and there should be a high adoption rate

• All children and young people with epilepsy must have their case reviewed annually by a health professional with training and expertise in the epilepsies8

Champions for Childhood Epilepsy Campaign Health Action Plan

Appendix B

For an overview of the campaign, visit www.ncype.org.uk/campaign

19

Champions for Childhood Epilepsy Campaign Education Action Plan

Schools and teachers can go the extra MILE for students with epilepsy by:

Monitoring achievement and behaviour • Keep careful and appropriate records of students with epilepsy

• Changes in behaviour or levels /rates of achievement can be due to epilepsy or medication and should be recorded

• Tackle any problems early

Including the child in activities and providing a ‘buddy’ • Offer support in school with a mentoring or ‘buddying’ system to help broaden

understanding of the condition14

• Avoid isolation and stigma – allow students to take a full part in all outings and activities

• Make necessary adjustments e.g. exam timings, coursework deadlines, timetables

Liaising fully with parents and health professionals • Let parents know what is going on in school – good information sharing is vital

• Ask for information about a students health care – it helps you to fully meet their needs

Ensuring staff are epilepsy aware and trained to deal with a seizure • Know exactly what to do if a student has a seizure

• Raise awareness across the whole school community – provide information to students, parents and staff

20

Further information

Appendix C

References

The Champions for Childhood Epilepsy Campaign really works!

The NCYPE is keen to work with any organisations that provide or influence services for children and young people with epilepsy.

We would also like to hear from children, teenagers, and their parents or carers who want to be involved in the campaign or want to share their experiences of education and health services.

If you would like to know more about the Champions for Childhood Epilepsy Campaignplease contact Alison Cornell (acornell@ncype.org.uk, 01342 832243) or visit www.ncype.org.uk/campaign

1. “Only 18 per cent of PCTs knew how many children had epilepsy in their catchment area”. Source: “Epilepsy in England: time for change”; January 2009; Published by Epilepsy Action.

2. “up to 40% of children referred to a tertiary clinic did not have epilepsy when assessed” Source: “The misdiagnosis of epilepsy in children admitted to a tertiary epilepsy centre with paroxysmal events”; Uldall P, Alving J, Hansen L K, Kibaek M, Buchholt J; 2006; Archives of disease in childhood 2006;91(3):219-21.

3. “children and young people with epilepsy have a poorer quality of life than children with other long term conditions such as asthma” Source: “Age related considerations”; A. Jacoby in “Epilepsy: a comprehensive textbook” edited by J.Engel, T.A. Pedley; published by Raven Publishers;1997.

4. “over half of the deaths of children and young people with epilepsy are possibly or potentially avoidable”. Source: “The National Sentinel Clinical Audit of Epilepsy-Related Death: epilepsy death in the shadows”; May 2002; Jane Hanna et al; published by Epilepsy Bereaved and The Stationery Office.

5. “too few children are offered, or referred early enough for, the surgery which could cure their epilepsy or reduce their seizures”. Source: Statement from Professor Helen Cross

21

(November 2009), “We conducted 108 procedures in the UK in 2008, compared to the estimate that 400 were required”.

6. “an unfortunately high rate of misdiagnosis – 26% of patients who have been diagnosed with epilepsy do not actually have the condition” Source: “The misdiagnosis of epilepsy and the management of refractory epilepsy in a specialist clinic”; D.Smith, B.A.Defalla and D.W.Chadwick; 1999; Q J Med 1999 92:15-23.

7. “only 18% of those recently diagnosed with epilepsy had their first consultant’s appointment within the NICE recommended two week referral” Source: “Epilepsy in England: time for change”; January 2009; Published by Epilepsy Action.

8. “over 50% of those with epilepsy which is resistant to treatment would benefit from a review by an expert” Source: “The misdiagnosis of epilepsy and the management of refractory epilepsy in a specialist clinic”; D.Smith, B.A.Defalla and D.W.Chadwick; 1999; Q J Med 1999 92:15-23.

9. “Academic underachievement is common in pediatric epilepsy”. Source: “Neuropsychological Predictors of Academic Underachievement in Pediatric Epilepsy: Moderating Roles of Demographic, Seizure, and Psychosocial Variables”; Philip S. Fastenau, Jianzhao Shen, David W. Dunn, Susan M. Perkins, Bruce P. Hermann, and Joan K. Austin; Epilepsia, 45(10):1261–1272, 2004

10. “Using the more stringent IQ-achievement discrepancy definition for learning disability, approximately one half of the children with epilepsy (48.2%) met psychometric criteria for learning disability in at least one area”. Source: “Academic Underachievement Among Children With Epilepsy”; Philip S. Fastenau, Jianzhao Shen, David W. Dunn, Joan K. Austin; Journal of Learning Disabilities, Vol 41, No.3, 195-207 (2008)

11. An average of forty eight per cent of parents felt their child regularly had difficulties completing classwork or homework because of their epilepsy. Thirty one per cent of parents felt their child’s school attendance was significantly affected by their epilepsy. Only 19 per cent of all schools felt that their staff’s level of epilepsy awareness and knowledge was good, with 13 per cent reporting that it was poor or very poor. Seventy four per cent of schools recognised that all members of staff would benefit from learning more about epilepsy Source: Survey by Margaret Rawnsley for Epilepsy Action, Nov 2005 & March 2006; published on www.epilepsy.org.uk

12. “It is therefore important for health professionals and educators to regularly assess the child’s academic functioning and school performance to identify those at risk for problems. Health professionals and educators need to collaborate on assessment and interventions to help maximize child academic success”. Source: “Factors associated with academic achievement in children with recent-onset seizures”; Angela M. McNelis, Cynthia S. Johnson, Thomas J. Huberty, Joan K. Austin; Seizure (2005) 14, 331—339

13. “I agree that services are still not good enough” Source: Ann Keen, Parliamentary Under-Secretary of State for Health Westminster Hall Debate on Epilepsy Hansard, 24 Feb 2009 : Column 56WH

14. In a survey by Birmingham University for Epilepsy Action in 2007, students with epilepsy reported that tiredness was a major effect of their condition. They were worried about

22

being at school and wanted their fellow pupils and school staff to know about the nature of epilepsy, how widespread it is, its impacts – and what they should do if a student had a seizure.They recommended a ‘buddying’ system for students with epilepsy. Source: “Understanding of epilepsy by children with, or without, epilepsy”; May 2007; Ann Lewis, Sarah Parsons and Penny Smith, University of Birmingham; published on www.epilepsy.org.uk.

15. The epilepsies - The diagnosis and management of the epilepsies in adults and children in primary and secondary care - October 2004 http://www.nice.org.uk/nicemedia/pdf/CG020NICEguideline.pdf

16. British Child and Adolescent Mental Health Survey 2003 Davies S, et al. Dev Med Child Neurology 2003

17. The epidemiology of epilepsy: the size of the problem. Bell GS, Sander JW. Seizure 2001; 10(4):306-314.

23

The NCYPE would like to thank all those who participated in the education pilot of the Champions for Childhood Epilepsy Campaign and in the preparation of this report;

1. Sarah Davison and all the staff in the Tandridge Confederation who worked in partnership with us to get the initial pilot work set up.

2. All the individual schools listed here who gave their time and commitment:

Audley Primary, Clifton Hill, Downsway, Hamsey Green Infants, Hamsey Green Junior, Holland Junior, Holy Trinity CE Secondary, Hurst Green, Imberhorne Secondary, Limpsfield CE, Marden Lodge, Moor House, Nutfield CE, St Catherine’s Primary, St Peter and St Paul’s Primary, St Peter’s CE Infants, Sunnydown, Tatsfield Primary, Warlingham Village, Whyteleafe, Worth

3. Members of the Surrey 0-19 community nursing team who joined in the training.

4. The many epilepsy charities and researchers whose work and research has supported this campaign.

5. The Linbury Trust, The Peter Harrison Foundation, the Rank Foundation and the Gosling Foundation for funding the Campaign.

6. The professional associations and trades unions who have met with NCYPE staff, including the National Union of Teachers, National Association of Headteachers, UNISON and the NASUWT.

Acknowledgements

‘It (the Champions for Childhood Epilepsy Campaign) has certainly raised an awareness at our school and I’m sure will be very beneficial when determining future training and policy reviews. This will ensure that any pupils with epilepsy will continue to get the best support for

their education and welfare.’ Epilepsy Champion – Class Teacher

Better futures for young lives with epilepsy St Piers Lane, Lingfield, Surrey RH7 6PWTel: 01342 832243 Fax: 01342 834639 Email: info@ncype.org.uk www.ncype.org.uk Childhood Epilepsy Helpline 01342 831342 Monday - Friday 0900 - 1300Email: enquiries@ncype.org.uk Registered as a non-profit making Charity No. 311877 Publication Number 99