Children with Epilepsy (Children and Families Act 2014)

Paul Maynard Excerpts

Monday 9th June 2014 Commons Chamber

[Paul Maynard (Blackpool North and Cleveleys) (Con)]

It is a pleasure to be able to initiate a debate on this issue. It is not the first time that we have discussed epilepsy in the Chamber, and I certainly hope it will not be the last. We had a useful Westminster Hall debate back in February 2013, initiated, I believe, by the hon. Member for Walsall South (Valerie Vaz), and I had a debate back in October 2010, which was my first on the topic.

Rather than look at the wide spectrum of epilepsy today, I want to focus—laser-like if I may—on the issue of epilepsy in education and the implications of the Children and Families Act 2014, which has just been introduced and which I think represents a fork in the road for how we deal with pupils who have serious medical conditions such as epilepsy.

Before I get into the nitty-gritty, it would be worth focusing once again on the numbers and the context. There are 122,000 children with epilepsy at any one time in our schools system—four times more than have diabetes. Diabetes has, quite rightly, had a lot of attention of late in this Chamber, so it is interesting to balance the two.

There are more than 40 types of epilepsy. It covers an amazingly massive spectrum, not just the classic “grand mal” fit with which many associate it. It can be as simple as the occasional “absence”, when people lose their attention for some reason. Epilepsy is often the least noticeable of a range of complex conditions that an individual has. More than 42% of pupils with epilepsy are on the learning disability spectrum. For some people with very severe forms of conditions such as cerebral palsy, epilepsy is almost the least of their concerns, but it is still an ever-present part of their daily lives.

A recent CHESS—Children with Epilepsy in Sussex Schools—study found that 42% of pupils with epilepsy were not fulfilling their potential in the school system, and I think that that important fact represents the crux of the debate. This is about not only the medical implications of epilepsy, but the societal context. So much is based on ignorance of the condition. That does not just mean not knowing what to do when someone is having a seizure; more important, it means ignorance of the causes, the background and the neurological underpinning of epilepsy, and, in an educational context, the implications for an individual’s learning capacity.

Lurking behind all that are the consequences of prejudice and the stigma that is attached to epilepsy. I often cite one example of that. When I was a Conservative candidate in Twickenham, I wrote to my local paper about national epilepsy day in an attempt to raise awareness of the condition. I was shocked when, the following week, a constituent wrote, “Mr Maynard should not have to worry; he has merely been possessed by evil spirits.” At the time I found it hard to believe that such a level of prejudice could exist, and I find it just as hard to believe now. However, it occurs not just in the playground, but in the classroom. Many pupils with epilepsy report a lack of understanding on the part of members of staff, which I think needs to be tackled.

The Children and Families Act represents a major opportunity in that regard. It has numerous good aspects, but I must ask the Minister a fundamental question: how can he ensure, as he implements the Act, that the needs of children with epilepsy are not left by the wayside just because they are among the more complex needs in terms of both health and education? I am sure the Minister agrees that the challenge posed by the Act will not simply disappear following Royal Assent. If anything, the challenge of implementation is that much greater. I ask him to bear it in mind that, as I said earlier, 42% of pupils fail to fulfil their educational potential. I should welcome his thoughts about how we can ensure that that percentage is reduced.

As I have said, I think that the Children and Families Act contains much that is good. I welcome the fact that school governors will have a duty to address the medical needs of pupils who are in their care. I welcome the fact that we are moving towards a more practical acceptance of epilepsy in the classroom. A couple of months ago, the Minister and I were lucky enough to launch the Council for Disabled Children’s “Dignity and Inclusion” documents, which provide teachers with a practical way in which to assess how to deal with children with epilepsy in their classrooms. However, there is still more to be done.

I myself have nocturnal epilepsy. I have night-time fits, which are triggered by alcohol. When I come to the next morning, my short-term memory is gone. I struggle to remember what I did the day before. I would probably even struggle, initially, to answer that classic question, “Can you name the Prime Minister?” I would have to think long and hard about it, and might actually fail to answer it, although I assure the House that I could answer it now.

It must be borne in mind that epileptic attacks, seizures and fits all have consequences for pupils’ learning. Young Epilepsy, the major charity that campaigns on behalf of people with epilepsy, which has been a great help in putting together the information for the debate, has produced what it calls “A Manifesto for Change”, which contains some useful guidance on matters on which I should like the Minister to focus. First and foremost, it wants to ensure that all pupils have access to a high-quality personalised assessment of their needs, rather than being subject to a standard tick-box approach. I know that Young Epilepsy has a graph assessment tool called ABLE, which may be helpful in that regard. It is all very well having an assessment and determining needs, but one must go to the next stage. All pupils, parents and teachers need to understand what the entitlements are as a consequence of the assessment. There is no point being assessed and then not knowing what one is entitled to and what the local offer consists of.

The third aspect that Young Epilepsy is campaigning on is perhaps the trickiest: teacher training. I realise that central Government have little control, if any, over the composition of teacher training syllabuses, but the key point is that it is not just about the first aid aspects of dealing with a pupil with epilepsy, important though that is—it often seems to get the main focus in political debate; it is also about understanding the consequences for an individual’s learning of those epilepsy seizures. More important again, it is about trying to understand that knowing how to spot the warning signs can incentivise earlier diagnosis and better care for the pupil.

I would welcome the Minister’s view on what he can do to encourage a greater role for epilepsy in initial teacher training. What can we do as part of continuous professional development to incentivise teachers who have already been trained and are in the classroom to look at epilepsy and understand not just the first aid consequences but the learning consequences? The two go hand in hand.

Another aspect that is worth bearing in mind and on which I would welcome the Minister’s view is the assessment that he has made of the pathfinders that have been reviewed recently. I understand that one of the initial conclusions is that within the existing resource allocation, it has been very hard to make a real difference to the lives of individual families. I know that that is an initial finding. Does he share that view? Does he have an alternative opinion?

I understand that £70 million has been allocated across the country to a range of local councils, which have all spent that money differently. Some have spent it on improving data systems, others on improving the local offer. Others have hired extra staff. How will the Minister assess all these different funding streams? What has had the most impact on families and the children? How will he measure the effectiveness of the £70 million? It is good to have £70 million, but we need to know how local authorities can best spend it.

Equally welcome is the £30 million that will go into what will be called independent supporters. That term seems a bit nebulous. I am not sure I can give a precise definition on the Floor of the House. I would welcome a bit more information from the Minister on what that might involve.

I would also like some reassurance. There is a slight concern in the epilepsy community that the £30 million may go to the larger charities, which can spend their money on branding, rather than investing in service delivery, expertise and competency down the years. It would be a great tragedy if the expertise were not utilised to ensure continuity of care for pupils between home, school and any other setting. That is why it is worth paying tribute once again to the Minister for his determination to ensure that we have education, health and care plans. I know that that was a running sore throughout the development and legislative process of the Act. We had to try to meld education and health, which did not always fit together neatly. It is vital that we have education, health and care plans, which will allow pupils to fit in between the two.

The other question I have for the Minister relates to the role of Ofsted. How will it assess the quality of the provision? At the moment I understand that we can rely on parent satisfaction surveys as a key indicator of whether services are working well. Although those are not to be dismissed, I am not sure that they constitute a proper statistical basis on which to make evidence-based policy decisions. I know that the Government are strong believers in an outcome-based system and in assessing the effectiveness of legislative intervention, but in this specific instance what outcomes will be used to make that assessment? Who will be doing the assessing—Ofsted or some other body? Will they have sufficient powers to assess the health component of what will occur in the educational setting as well as the educational activities?

My final question relates to what are called key workers, which is a relatively broad term and encompasses people who truly understand epilepsy and who can help families to navigate their way through what remains a complex minefield of different service providers. It is noted in the Children and Families Act that key workers are seen to be a good thing, but they are not mandatory: they are merely an advised addition that local authorities can consider. I would be interested to know how the Minister thinks we can strengthen the appeal of key workers, though not necessarily to make them mandatory, because I understand the importance of localism and ensuring that local authorities make up their own minds. There is a case, however, for ensuring that key workers do not become a luxury optional extra that gets tacked on at the end of a local offer if there is some money left over, but are the building blocks of the local offer provision for families with children with epilepsy.

I realise that, as is the nature of Adjournment debates, I have peppered the Minister with detailed questions, some of which I hope he can answer—civil servants in the Box are passing yet more answers to him as I speak. If he cannot answer all my questions, I hope he will be able to write to me at a later date. I thank him for agreeing to meet Young Epilepsy, which I am sure will be an interesting meeting in the light of this debate. I thank him and all hon. Members who have attended for their time, and I look forward to hearing his reply.