Children's Rights - Human Rights Joint Committee Contents

Memorandum submitted by the Joint Epilepsy Council (JEC)

  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 affected pupil.

    "As well as the potential for seizures to make the child miss lessons, epilepsy can cause short- and long-term memory problems, difficulties with concentration and information retention. Often teachers don't fully understand why a child may appear to lack effort or attention and achieve poorly. Variable behaviour can be misinterpreted as being wilful."

    Professor Brian Neville (former Prince of Wales's Chair of Childhood Epilepsy).

  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 Development (CPD).

  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 needs:

    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. [227901]

    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 Policy—lack 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. Sharon wrote:

    "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 epilepsy.

  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 sector.

    — 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:

  24.  Epilepsy basics:

    — common serious neurological condition;

    — characterised by recurrent, unprovoked epileptic seizures;

    — often controllable, but not curable, with powerful drugs; and

    — surgery works in some cases but availability is limited

March 2009

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