Epilepsy and Related Conditions (Education and Health Services)
Valerie Vaz (Walsall South) (Lab)
I beg to move,
That leave be given to bring in a Bill to require action plans to be prepared for the provision of education and health services for children and adults with epilepsy and related conditions; to make provision about support for children and adults with epilepsy and related conditions; and for connected purposes.
Let me offer the following words to the House: complex, fascinating and unique. I could be talking about us and the spouses and partners of hon. Members, but I am describing the human brain, which is at the centre and the focus of epilepsy and other related conditions, such as non-epileptic seizures. The human brain is the most complex organ in the living world. It contains 10 billion neurones, which cause seizures if they fire excessively. Sometimes there are structural and genetic reasons for such seizures and sometimes they are idiopathic, which means that there are no known causes.
As a society, we are failing children and adults with these conditions. Today I hope to persuade the Government to support my Bill, which proposes an action plan in health and education that is big on impact and low on costs, but could lead to savings in the short and long term and, more importantly, could save lives. With a swish of the Secretary of State’s pen, this could lead to benefits to society, both economic and general, and to many individuals with epilepsy, whose lives are adversely affected by poor health or education provision.
Nearly 500,000 people in the UK have epilepsy—that is one in every 131 people—and so in an average constituency 705 people will have it. Many of them will struggle throughout their lives with stigma, unemployment and fear. They look to our NHS to support them, but it fails them. There are centres of excellence throughout the country, and Britain leads the world in epilepsy research, but unfortunately we are lagging well behind in practice. The tragic part is that, on average, three people a day die of epilepsy-related causes and one of those three deaths every day is avoidable with good treatment. Four hundred people are therefore dying needlessly each and every year, which is more than the total of AIDS-related deaths and cot deaths combined. The death rate in Britain is about 25% higher than the median for the EU, and these deaths are particularly tragic because the greatest risk is in the 16 to 35 age bracket. That figure of 400 represents nearly two thirds of the people in this Chamber; there would be an outcry if something affected two thirds of this Chamber every year, but these deaths go unnoticed.
The first challenge is diagnosis, and the failure rate is alarming. Studies show a misdiagnosis rate of 20 to 31%, with one study of childhood epilepsy showing a rate of 40%. National Institute for Health and Clinical Excellence guidelines require a specialist to make the diagnosis and a first specialist appointment to take place within two weeks of a seizure. Without a diagnosis, there can be no treatment. The patient can experience many negative events with severe consequences, including death, before they are even seen by the specialist and treated. A recent survey of NHS trusts published in January 2009 by Epilepsy Action showed that more than 90% failed to meet the two-week deadline, and it is the patient who has been paying the price.
For many, the misdiagnosis continues for decades, and doctors prescribe different drugs on a trial-and-error basis. What is required is a tertiary referral to a specialist who can get the diagnosis right. It is estimated that an extra 20% of people with epilepsy could be seizure-free with the right treatment. In England alone, that would translate to a massive 69,000 more people free of seizures and able to play a full part in society. Tertiary referral is also needed to establish who can benefit from surgery, which can cure epilepsy in some people. It is estimated that only 25% of children who could benefit from surgery get access to it.
The medical costs alone of misdiagnosis are estimated at more than £22 million each year: every mistreated patient calls on our overstretched NHS, as general practitioner visits, repeated hospitalisations and generalist consultant time are absorbed. GPs should be able to refer directly to an epilepsy specialist, rather than to a secondary generalist. Other vital issues to address include: the employment of life-enhancing and cost-saving epilepsy specialist nurses; the low level of epilepsy specialist neurologists; and the many people who have been wrongly diagnosed with epilepsy and spend the rest of their lives taking powerful drugs with serious side effects for no good reason.
I shall now discuss education and why we need an action plan to support our children. The following extract from the 1978 Warnock report on special education remains as valid today as it was at the time:
“many children with epilepsy may have serious problems in concentration and behaviour, which affect their learning....Their particular difficulties are not always recognised by schools and colleges, and better arrangements for reviewing their progress are needed....if these children are to be helped to develop their potential to the full.”
The actions proposed by Warnock still need implementation. Approximately 40,000 children with epilepsy are in mainstream schools, and about half of all children with epilepsy are underachieving in relation to their intellectual ability. Epilepsy is defined by the Department for Education as being a purely medical condition in the same category as asthma and diabetes, but that comparison is flawed. With the proper management of medication, a large majority of children with diabetes and asthma have little or no education or behavioural challenges, whereas that is not the case for children with epilepsy. Epilepsy is a medical condition that frequently has an impact on learning, well-being and behaviour; it is more akin to autism.
There is no reference to epilepsy in the Department for Education’s key special educational needs document. That lack of recognition hampers teachers as it results in a failure to provide advice or to recognise that sometimes epilepsy can take on the form of absences, where children literally space out. Professor Brian Neville, former Prince of Wales chair of childhood epilepsy, has said:
“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.”
Even when the children are on drugs, those often have a side effect. Whereas those with mild dyslexia are afforded extra time in examinations, children with a diagnosis of epilepsy or a history of non-epileptic seizures are not afforded that; nor are they given any attention.
The Department needs to recognise epilepsy as a special educational need and to recognise that it can affect those with higher than average intellectual ability who may be achieving only at a comparatively low level. To give children with epilepsy and related conditions an individual assessment to establish what support they need would involve the average secondary school undertaking only one assessment a year. Without that assessment, it is impossible to know how best to support a child with epilepsy or related conditions so that the legal duty to them is satisfied—that is, that reasonable steps have been taken to ensure that they are not placed at a disadvantage in education or other services. Such a move would anticipate where the barriers to learning would lie and take action to remove them.
In this way, people can fulfil their potential like other high-profile people with epilepsy—they can become the next Dostoevsky, and can write poetry like Lord Byron or beautiful songs like Neil Young. We owe it to all those people whose deaths could have been avoided and who never reached their promise. I ask the House and the Government to support an action plan for tertiary referral in health and an annual assessment in education to save the needless loss of life and to enable our children and adults to fulfil their hopes and dreams.
Question put and agreed to.
Ordered,
That Valerie Vaz, Mr David Amess, Jeremy Corbyn, Mrs Mary Glindon, Mr Sam Gyimah, Paul Maynard, Steve McCabe, Grahame M. Morris, Pamela Nash, Bob Russell, Laura Sandys and Owen Smith present the Bill.
Valerie Vaz accordingly presented the Bill.
Bill read the First time; to be read a Second time on Friday, 4 March and to be printed (Bill 112).