Memorandum submitted by the Joint Epilepsy
1. The JEC is an umbrella body of 26 charitable
organisation members, representing about half a million people
with epilepsy in Britain, their families and carers. The JEC also
provide the secretariat to the APPG on Epilepsy.
2. This submission will concentrate on discrimination
against children on the grounds of disability in education. Many
of the points we make are specific to epilepsy however much will
be relevant to pupils with medical conditions and special educational
needs (SEN) more generally.
3. About 60,000 young people under 18 have
epilepsy in the UK. Half of these children are estimated to be
under-achieving academically in relation to their intellectual
level. (The Epilepsy Task Force, Burden of Epilepsy; a health
economics perspective, Joint Epilepsy Council, 1999.) About 7,500
of these young people with epilepsy suffer serious regression
in their learning, with psychiatric and behavioural syndromes
including autistic spectrum disorders and obsessional or challenging
behaviour as well as their epilepsy. This submission does not
concentrate on this worst affectedgroup but on the education of
children with epilepsy in mainstream schools.
4. The following describes the specific
effects of epilepsy on education and points to the problems experienced
by many teachers in understanding the challenges faced by the
5. There is a strong link between difficult-to-control
epilepsy and learning disabilities. Among people known to learning
disability services in the UK, prevalence is 20-30% (Bell G S,
Sander J W. The epidemiology of epilepsy: the size of the problem.
Seizure 2001; 10(4):306-314). To put this in plainer language,
roughly a quarter of those known to learning disability services
have epilepsy. The high significance of epilepsy to any attempt
to improve outcomes for pupils with SEN is therefore obvious however
there is a serious lack of recognition for this condition in DCSF
policy, Initial Teacher Training (ITT) and Continuing Professional
6. There is a widespread perception that
pupils with SEN are a small minority of the school population.
We therefore welcomed the clear statement in a Written Answer
that in reality one in five of all pupils have special educational
Mr. Ancram: To ask the Secretary of
State for Children, Schools and Families what proportion of funding
for schools in England was directed to students with special needs
and learning difficulties in 2007-08; and what proportion of the
school student body they comprised. 
Sarah McCarthy-Fry: ... As at January
2008, 20% of pupils had special educational needs (SEN), 2.8%
had SEN "statements" and 17.2% had SEN without statements
7. DCSF Policylack of recognition
for epilepsy. Epilepsy is defined by DCSF as a purely medical
condition despite the obvious and measurable effects it has on
education. As a result, it is not included in the Department's
key SEN documents, The Special Educational Needs Code of Practice
and Removing Barriers to Achievement. This latter states that
every child has the right to a good education and the opportunity
to fulfil their potential. This is not currently the case for
children with epilepsy.
8. Some light was thrown on current Government
intentions by this extract from a letter from Sharon Hodgson MP.
The meeting referred to was with Sarah McCarthy-Fry MP, Minister
responsible for SEN, during the week commencing 23 February 2009.
"One of the areas I wanted to press on was
the need for both DCSF and the Department of Health to look at
how they can work together to share information which will benefit
service users. I raised the specific example of Epilepsy and asked
whether it would be possible for greater acknowledgement of the
fact that for some medical conditions there is a strong link to
Special Educational Needs (SEN) prevalence. I am assured that
this will be considered as part of a review of the categories
of need but that for the time being needs such as epilepsy will
continue to be registered under the category of disabled."
9. The difficulty with this approach is
that to define a child with epilepsy as having, for example, "communication
difficulties" is only of use for the purposes of counting.
It does not help to tackle those communication difficulties as
the steps needed to be taken to help that child will be different
from those needed to help other children with that challenge.
There are no current plans for a review of the categories of need
so far as we are aware.
10. Further, this lack of recognition actively
hampers the teacher by failing to provide advice. Improvements
to ITT and CPD to better enable teachers to work with pupils with
SEN will need to be supported by DCSF in the way it provides advice
to schools and teachers about conditions such as epilepsy.
11. The current DCSF position is difficult
to justify and can only hamper genuine progress given the level
of correlation between epilepsy and learning difficulties, the
sheer scale of the numbers affected, the new initiatives to improve
educational outcomes for pupils with SEN and proposals for more
children with SEN to be educated in mainstream schools.
12. We note that last year the Government
announced £18 million of funding for a masters qualification
in teaching and learning. It is imperative that the qualification
is required to contain work on supporting pupils with SEN.
13. We welcome the £3.5 million of
funding recently pledged to the Training and Development Agency
for Schools for the roll-out of SEN units in primary undergraduate
and postgraduate certificate in education courses and the estimated
£8 million more that will be spent over the next three years
to embed SEN programmes in all teaching qualifications. However,
as epilepsy is not included in The Special Educational Needs
Code of Practice, it is questionable how much assistance to
the tens of thousands of pupils with epilepsy, representing about
a quarter of all those known to UK learning disability services,
this will be.
14. School medication policies are variable
and need reviewing. The consequences for children with epilepsy
include being sent to hospital unnecessarily, needlessly missing
lessons and further damaging their educational potential. Even
for those children whose epilepsy is well-controlled, the effects
of the powerful drugs they are taking can include impaired memory
and attention (Effects of antiepileptic drugs on learning ...
Shannon H E and Love P L, Epilepsy & Behavior Vol 10, Issue
1, Feb 2007).
15. The 2005 Departmental guidance entitled
Managing Medicines in Schools and Early Years Setting encourages
schools and local authorities to develop local policies on the
management of pupil's medicines and on supporting pupils with
medical needs, taking account of local resources and their various
responsibilities. It is for schools and local authorities to set
their own policy, including the training needs of staff. Anecdotal
evidence is often strongly critical of individual schools medication
policies concerning epilepsy. National minimum standards are required.
16. Is a postcode lottery any more acceptable
in education than it is in health? Must pupils with SEN accept
that the support they receive in school is dependent on variable
local decision-making? And how well does this sit with the Disability
Discrimination Act 1995, which requires schools not to treat disabled
pupils less favourably?
17. Duty to provide for disabled pupils.
There is a duty under the SEN and Disability Act 2001 (amending
the Disability Discrimination Act 1995) "for schools and
many early years settings to take `reasonable steps' to ensure
that disabled pupils are not placed at a substantial disadvantage
in relation to the education and other services they provide.
This means that they must anticipate where barriers to learning
lie and take action to remove them as far as they are able."
All too often, those barriers remain in place for pupils with
18. The JEC has called for several initiatives
from Government including:
Specific consideration for epilepsy,
commensurate with its correlation to learning difficulties, in
the Government's planning, policy and guidance for the education
A commitment by the Government to collect
data on the population of children and young people with epilepsy,
and the special educational needs they experience, when implementing
the Children's Plan commitment to improve SEN data collection.
Specific consideration for epilepsy,
commensurate with its correlation to learning difficulties, during
initial teacher training and continuous professional development
for education professionals when implementing the Children's Plan
commitment to improve SEN training.
A review of school medication policies.
19. Given the accepted current inadequacies
of ITT in preparing teachers for working with pupils with SEN,
the time that will be needed to secure improvements and the fact
that current teachers will not benefit from this training, immediate
steps to improve the contribution made by CPD could be achieved
by ensuring that an element of SEN training is embedded in the
five INSET days set aside for CPD in the school year.
20. As one in five pupils have SEN, it would
seem reasonable to ensure that 20% of the INSET days should be
devoted to SEN, at least for a limited period. This could be achieved
by either setting aside one of those days for specific training
on SEN or by requiring 20% of each day to be SEN-specific.
21. One alternative suggestion might be
to allow current teachers the option to elect further SEN-specific
training particularly where they have pupils with certain SEN
in their classes. We note that the new Education Bill includes
a right for teachers to request further training. The objection
to election is that given the high proportion of pupils with SEN,
it is inevitable that all teachers will need the skills to support
pupils with SEN. Election alone would only continue the very patchy
nature of the distribution of the skills required. And what if
the teacher with those "certain SEN" in their class
declines to take up the option of further training? It will be
the pupil who will suffer.
22. The JEC have heard objections to the
setting aside of one INSET day for SEN purposes. The five INSET
days are decided by teachers and governors and are usually a part
of the school's development plan, which is often linked to targets
identified by OFSTED and also unique factors affecting the school
at a given time such as bullying or racism. However, the failure
to date to address SEN adequately cannot be continued on the grounds
that there is no time for it. Whenever a deficiency requires correction,
extra provision must be made available or other priorities may
need to be adjusted.
23. Other challenges. People with epilepsy
experience many specific challenges throughout life and especially
in healthcare, education and employment. If you would like more
detail, Wasted Money, Wasted Lives, an APPG on epilepsy report
into the human and economic cost of epilepsy services is available
to download at: www.jointepilepsycouncil.org.uk/inquiry.asp
24. Epilepsy basics:
common serious neurological condition;
characterised by recurrent, unprovoked
often controllable, but not curable,
with powerful drugs; and
surgery works in some cases but availability