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 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, I think that 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 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.
May I begin in the traditional and in this case very pertinent way, by congratulating my hon. Friend Paul Maynard for once again initiating an important debate about the wide subject of special educational needs and the specific area of those many children and young people who have some form of epilepsy? This is not the first debate of this kind that we have had, and it is good that he reminds us that as we move on from the statute book to the implementation of the Children and Families Act 2014, we should keep our focus very much on what this means to the families and children who we hope to benefit from the reforms.
Like my hon. Friend, I understand the importance of supporting pupils with medical conditions such as epilepsy, and it is imperative that the right support is put in place quickly and effectively. I will try to cover as many of the points that he made as possible, and I will of course endeavour to make sure he has a full and proper response in writing to those that I do not.
I should like to start by restating our ambition that every child with SEN, or who has a disability or a medical condition that impedes their ability to learn, including those with epilepsy, receives the support they need, so they can achieve well in school and go on to find employment and lead happy and fulfilled lives. The special needs reforms in the 2014 Act are deliberately focused on joining up help across education, health and social care, so that children receive the help that they need when they need it throughout their education.
Parents and children will be involved in decisions about the support they receive much more closely than hitherto, so that they have a genuine say in what they want to achieve and how they will achieve it.
Epilepsy is just one of the many medical conditions for which pupils require support, to help them progress properly through school, and it is right to acknowledge the excellent work that most of our schools do to provide the support that their pupils need. However, there can be no excuse for the poor practice that evidence suggests exists in some schools.
Under the Equality Act 2010, schools have clear duties not to directly or indirectly discriminate against children and young people with disabilities. Government guidance on the Act clearly identifies long-term health conditions, such as epilepsy, as being among the impairments from which a disability can arise, and they are therefore covered by this duty. As such, this form of discrimination is simply not acceptable.
As my hon. Friend skilfully argued, however, pupils with epilepsy often face significant challenges and difficulties not just in school, but in all aspects of their lives, and I also recognise that these challenges can be exacerbated because of a lack of understanding of the condition by others.
I remember a family holiday from about 30 years ago when we had with us a school friend of my sister who had epilepsy, unbeknown to me. During our holiday, this child, who sadly and tragically died this year, suffered an epileptic fit. As a young boy, I was shocked by what I saw happen in front of my eyes, but, having had had it explained to me, it has left me in good stead for the rest of my life, in terms of understanding the cause, effect and manifestation of epilepsy and the surrounding context for someone who has it. That was pure chance, and many people, whether pupils or even teachers at school, do not have that experience and cannot draw from it.
As my hon. Friend said, that is one reason why we introduced a new duty for school governing bodies to make arrangements to support pupils with medical conditions and to have regard to guidance, so that they get the support they need at their time of need. Our aim in putting that duty in the 2014 Act was to send out a clear message that poor practice will not be tolerated and that conditions such as epilepsy must be properly recognised. Pupils with medical conditions deserve to be supported properly in schools and to have the same chances as everyone else to succeed in whatever they choose to do.
The new statutory guidance on supporting pupils with medical conditions acknowledges the negative social and emotional implications associated with medical conditions such as epilepsy. That is why there is a clear expectation for a child’s social and emotional needs to be taken into account when considering the support that they require. This guidance, which comes into force in September, is deliberately child-focused, recognising that medical conditions will present differently in different children. Epilepsy is a case in point; no two children with epilepsy will have identical needs, and it is therefore right, as my hon. Friend said, that each case is treated individually, based on the needs of each child.
That is why we have also made it clear in the guidance that the school’s policy should cover the role of individual health care plans and clearly state who is responsible for their development. The plans will help to ensure that school staff know how to support pupils in lessons, how to help them with administering medication and what to do in an emergency. They will be drawn up in collaboration between the school, the parents and the pupil—that is important—and the most relevant health care professional, such as the epilepsy specialist nurse. I am pleased that we have developed the new statutory guidance in such close collaboration with a wide range of interested parties. Young Epilepsy, as a member of the Health Conditions in Schools Alliance, was actively involved in that work and added substantial value to the guidance, for which we are extremely grateful.
In identifying children and young people who need additional support and adjustments, whether because they have a health condition, a disability or special educational needs, the key is that professionals should look at the particular needs of the individual and seek to co-ordinate support, so all these needs are addressed coherently. Children with epilepsy will not necessarily have SEN. What is set out in a child’s individual health care plan might be enough to ensure that he or she has access to differentiated, high-quality teaching. However, where a child has SEN, the new nought-to-25 SEND—special educational needs and disability—code of practice sets out how schools should work with parents to identify underlying issues, including health needs, and reflect those in the support given and the outcomes we all want to see achieved. Where a child or young person has an education, health and care plan, the code sets out a thorough process—again, with parents centrally involved—for putting in place a comprehensive plan covering the full range of a child’s needs; obviously, that can include support provided by specialist services.
These plans are also supported by the strategic arrangements in the 2014 Act. The joint commissioning duties require education, care and health services to come together to commission services for children and young people with SEN and disabilities. Wider provision is also covered, including through a consideration of how to integrate education, health and care provision to provide that most effectively, in line with wider duties. As my hon. Friend will also be aware, the new local offer will set out details of all the services for children and young people with SEN and disabilities in a local authority area and how to access them. We expect that that will reflect the full range of services, including those for children and young people with epilepsy, and those offered by the voluntary and community sector.
On initial teacher training, I fully understand the case my hon. Friend makes, and it is always tempting to look to ITT as a solution in respect of the desire to see every teacher well versed in the practice of dealing with many of these conditions. Teaching standards include duties on schools to ensure that their staff understand how to deal with children’s special educational needs. We can also look at reviews into initial teacher training to satisfy ourselves that they are going far enough.
My hon. Friend will know that there have been a number of evaluations of pathfinders in 31 local authority areas. We now have pathfinder champions who are helping those non-pathfinder areas to learn from the evaluation of the progress that they have made. We have excellent examples of families who feel that the culture has shifted. For the first time, they have been able to sit in a room with someone from education, someone from health and someone from social care, and they have been asked what they think should happen, rather than it being told to them.
The special educational needs reform grant of £70 million has gone to local authorities. We have done a local authority readiness test to see how each local authority is performing in preparation for the changes in September. Ofsted is doing some thematic work to look at how some of the reforms will bed in over the next months and years, and I hope to see progress in time towards a more cohesive inspection regime of special educational need provision across all the different services. Ofsted is starting to consider that that is the best way forward for children’s services, and there is a good case for looking more carefully at how education, health and social care inspection can be brought together, so that it looks at the experience of the child and the family, rather than at the individual services.
The independent supporters are, in many ways, the key workers about whom my hon. Friend was talking. The £30 million will pay for 1,800 independent supporters who will be drawn predominantly from the charitable sector. I encourage organisations such as Young Epilepsy, which want to get involved, to contact the Council for Disabled Children, which is helping us to recruit those independent supporters. It works out at about 12 in each local authority area. We know from speaking to parents right across the country that one of the things that they value more than anything else is to have someone who is not from the local authority, the school or one of the health providers to provide them with that genuine independent support to navigate them through what can sometimes be seen as a very convoluted system—a system that we are trying to make clearer and easier to access. It is very much an investment in service delivery, as my hon. Friend says, and the £30 million will be invested over the next two years. To monitor its progress, we will work closely with our strategic partner, the Council for Disabled Children, to make sure that it is having the impact that we all want to see.
Over and above that, I will be saying more tomorrow about how we will ensure that the extra burdens that we are placing on local authorities will be met, so that the authorities have sufficient funds to ensure that the system really does reach the parts that we want it to. Ultimately, this is about ensuring that parents and young people who have special educational needs and disabilities see that cultural change in the system that for too long has been absent. As my hon. Friend says, this is a fork in the road, and we need to take the right path. I believe that we can do that, but we need to pull together to make sure that this really does make the difference that we all want to see.
Question put and agreed to.