Educational Support (Children with Cancer)

Mark Tami Excerpts

Thursday 10th January 2013 Commons Chamber

[Mark Tami (Alyn and Deeside) (Lab)]

I begin by congratulating CLIC Sargent on its report, “No child with cancer left out”. It is an excellent report that addresses many of the challenges facing children with cancer and raises awareness of the impact that such a diagnosis can have on a child’s education. The report centres on those returning to primary education, but it is just as relevant—many of its points are just as relevant—to those attending secondary school, as well.

Every year, around 2,000 young people aged 16 to 24 are diagnosed with cancer. For those aged up to 15, it is around 1,600. That equates to about 10 families a day being given the devastating news that their child has cancer. That will affect not just the child’s life, but the whole family’s life, including the siblings and everyone around the family. As parents, there is nothing that can prepare us for it. The parent’s world is turned upside down, and all the things that seemed important just the day before suddenly become totally and utterly irrelevant.

The child embarks on a programme of treatment that, while necessary, is frightening for all concerned. In many cases, medical intervention will take years, with many ups and downs along the road. For leukaemia, under standard protocol, it will take three years of treatment for boys and two years for girls. For other cancers, it will be a combination of chemotherapy, radiotherapy and surgery. For some with more complex conditions or for those who relapse, it will mean a stem cell or bone marrow transplant.

Speaking as a parent of a child who was diagnosed with cancer, I can honestly say that, at the time, the last thing I thought about was the future or current educational needs of my son, Max. It never crossed my mind at all. I was totally focused on getting him through the medical battle against this dreadful disease.

That issue has perhaps become part of the problem in that there is no co-ordinated approach to support the child after treatment in respect of education. We tackle and address the physical and medical side, but fail to consider the educational and social needs of the children affected. That is a problem not just for parents, but for schools, local authorities and, indeed, Government policy.

For children who thankfully survive cancer, that is far from the end of the story. For most, it is the start of another journey—this time of trying and working to get back into school, and of re-building and re-establishing friendships with the peer group. It is important both to get the peer group to understand what the children have gone through and to support them in going forward.

The CLIC Sargent report found that nine out of 10 children with a cancer diagnosis and subsequent treatment reported that their school life was affected. Two key issues need to be addressed: first, how the school and education authority respond to support the child on return to school and prior to that return; and, secondly—perhaps too often overlooked, but none the less vital—how to prepare the school, and class mates in particular, for the child’s return to school.

On that second point, there appears to be no established procedures to advise and help schools and teachers. There is some good practice out there and some respondents detailed in the report say they had a very positive experience for their child—but, equally, the reverse can be the case. Some schools are ill prepared, or perhaps understandably reluctant to address what is a very difficult issue, particularly when very young children are involved.

We can, after all, put ourselves in the position of the classmates of one of those children. One moment the child is at school playing games, and the next moment he or she is gone, for what must seem a very long time in the life of the other young children. They may send a card, but they will have no other real contact. When the child returns to school, he or she may look very different as a result of chemotherapy and steroids. Lack of hair, a minor issue in itself, may seem particularly strange to younger children. A central line visible through clothing may be difficult for them to comprehend, and probably quite frightening for them.

The other children will obviously have questions to ask. Why has it happened? Could it happen to them? Will the child get better? Is it possible to catch it? I am sure that there will be a host of other questions. Such issues, however, need to be addressed before the child returns to school rather than afterwards, when concerns and, in some cases, bullying may arise. The CLIC Sargent report highlights what is, thankfully, a minority of cases in which classmates have bullied children out of jealousy because of their lower attendance at school, or because they have been on a supported holiday to Disneyland or Lapland through a charity such as the Make-A-Wish Foundation. Perhaps it has not really been explained to the classmates why the child has been allowed to be away from school for such a long period.

Let me say at this point how important I think charities such as Make-A-Wish are in boosting a child’s confidence and well-being. I have done some work with the Ellen MacArthur Cancer Trust, and my son has certainly enjoyed his experience of it. The trust does excellent work in bringing young cancer sufferers together to meet the challenges that sailing can provide. It is really positive, and really helps them to build their confidence.

Whatever form bullying may take, I think that it is mainly born of a lack of understanding of what a child with a cancer diagnosis has actually been through. In the time in which such children have been absent from school, many of their classmates will have moved on and made new friends. Trying to re-establish former friendships may not be easy, particularly if the child who has been absent is unable to participate in the same activities and games as before. One of the most telling quotations in the CLIC Sargent report comes from a parent who recognised that

“returning to school isn’t just about educational needs—it’s about emotional ones too.”

I think that that is just as important as supporting the academic side of a child’s education.

CLIC Sargent and a number of hospital schools can and do offer support for teachers through events such as teachers’ days, but they cannot be expected to provide across-the-board cover. We need more joined-up thinking on the part of local authorities and hospitals to ensure that a more comprehensive and co-ordinated approach is adopted to enable schools and teachers to tackle the issue. That applies not just to state schools but to private and free schools, and to secondary as well as primary schools. The Anthony Nolan “register and be a lifesaver” campaign is an excellent example of the way in which young people can be educated in how they can save lives by joining blood, organ and cell registers.

The second issue that I want to raise is the educational support that is available to children, both before and after their return to school. The CLIC Sargent report found that over 70% of children had received some form of education during their treatment, either at a hospital school or through home tuition, or in most cases a combination of both. While local authorities have a statutory duty to provide suitable education to children with an illness, there are still issues in respect of children with cancer accessing provision. Hospital schools play an important role when a child is in hospital for a prolonged period, and I can certainly say from my experience that they help re-engage children in what we call normal life, outside of just coping with the treatment itself. When a child leaves hospital but is still unable to return to school, access to home tuition becomes vital.

The report highlights that securing home tuition provision can be far from straightforward. My own experience with Flintshire county council was very positive. My son had an excellent teacher, Jane Watts, who helped him through a very difficult period both in respect of teaching and in being someone to talk to, and I thank her for all the help she gave us. Other parents have not been so lucky, however. Some have found that either the provision is not available or it seems to take an inordinate amount of time to set it up. While entitlement to home tuition in terms of the number of hours to be provided is not defined in law, the majority of local authorities provide a minimum of five hours a week, and that is what my son got. In the vast majority of cases, that level of provision is not enough, and it therefore needs to be increased.

There needs to be flexibility so that provision can be varied, depending on the child’s needs at various times. If the child is undergoing treatment, five hours may be too much, while at other times the child may be able to cope with, and may want, a lot more time than that. It seems strange that in many cases if the child had been excluded from school for bad behaviour, rather than because they had a cancer diagnosis, they would get much greater provision.

Flexibility is key, therefore, but we should also extend provision so it does not just stop when the child returns to school, because it is a vital component in helping children catch up when they return to school and in allowing for further periods of absence. My son had a number of post-transplant absences from school; graft-versus-host disease can lead to weeks, or even months, off school. We were able to pay for extra home tuition once the local authority provision had stopped, but that is not an option for many parents because of financial constraints. I am concerned that in our current difficult financial climate, rather than access to home tuition being extended, it might become even more limited. That must not be allowed to happen. I hope the Minister will address that point, and will agree that we must ensure that quality provision is maintained and enhanced.

The next challenge is the return to school itself. In the CLIC Sargent report, 56% of parents said that their child found it difficult to readjust to school; many found that their child’s skill levels had regressed since treatment and that their child found core subjects, particularly maths and English, far more difficult. CLIC Sargent also found in an earlier 2011 report that 64% of 16 to 18-year-olds with cancer fell behind with their work and failed to attain the results they had expected, with 29% of all young people surveyed saying they had left education altogether.

There is a broad consensus that children with cancer need extra support in school, but there is a lack of agreement on, and understanding of, what that level of support needs to be and the nature of it. Some children will need a minimal level of additional support, whereas others will need a far more formalised special educational needs assessment, which will in some cases go on for their entire school career. No matter how effectively children’s needs are assessed on their return to school, and particularly if they receive extra support, an ongoing level of assessment and support still needs to be provided, as circumstances can change. That goes back to the point I was making earlier: the path to normality is not steady; it is a bumpy road, and there will be plenty of ups and downs along the way.

Therefore, flexibility in provision is key, but clearly that provision needs to be there in the first place. The children and families Bill, which will be before this House in the coming months, gives us the opportunity to build in such provision and guarantee children with cancer the support they need. My concern is that the Bill, in draft form, seems to focus predominantly on children with a high level of special educational needs. I understand why that is, but many children with cancer may not meet those criteria, and may receive little or no support as a result. The Government therefore need to ensure that their definition of special educational needs includes all children with a disability, in order to ensure that education providers’ duties under the Equality Act 2010 are integrated into the raised special educational needs code of practice. For children with mild or moderate special educational needs, there needs to be more clarity on how a new, single, school-based category of special educational needs will interact with the local offer and school-based support. We also need to know how parents can ensure that their child is provided with the level of support they need, and that that support continues throughout to meet their educational needs. Even if there are periods, right up until they go to university, when they drop out and then go back into education, that support should be maintained all the way through and they should not have to go through a laborious process to get it again.

Children with cancer experience many challenges in life, none more so than fighting the disease itself. For those who win the battle, or continue to fight, the very least we must do is provide an environment in which they can reach their true potential in life. Education is the key to that future, and we should do everything we can to provide the additional support that those children need. We need greater co-operation between schools, local authorities, hospitals and Government policy to ensure that that aim is actually delivered. We need to be more co-ordinated; we need to be more joined up in our thinking. These young people need our support and we cannot let them down.

[The Parliamentary Under-Secretary of State for Education (Elizabeth Truss)]

I thank the hon. Member for Alyn and Deeside (Mark Tami) for raising an important issue and for his very moving speech about his experience and that of his son, Max. It was particularly informative because it was based on the personal experience of parents and children going through that difficult and troubling situation. It has been very helpful in informing the Government’s policy and I hope that he will continue to engage with the Government, particularly given the forthcoming Bill, which covers some of the issues he raised in his speech. I praise the report by CLIC Sargent and the important work that that charity does to support children. The hon. Gentleman also mentioned the Ellen MacArthur Trust and its vital work.

The Government believe that pupils with cancer deserve as good an education as any other pupil and poor health should never mean poor education. We need to provide good education to all, regardless of their personal circumstances or educational setting. The hon. Gentleman is right to highlight the issues for children with cancer as well as those suffering from other illnesses and problems. The problems are very real, but I hope to outline some of the steps the Government are taking to address them. I will also take on board some of his comments for our future work.

We want schools to ensure that they exercise their professional role in supporting all students. They are best placed to know the circumstances of the individual children, what support is most suitable, what is available and how to work with other local bodies. We do not want to prescribe a set of processes for them to go through, because we think the focus should be on outcomes and how the children and families are affected.

I completely agree with the hon. Gentleman that sharing information effectively and efficiently is essential. All relevant information should be shared with the parties involved. Obviously, there are issues about being in touch with data protection principles, but that should not discourage schools or others from providing information when they can do so. Commissioners of services should maintain ongoing contact with the provider, pupil, and parents with clear procedures for exchanging information, monitoring progress and providing pastoral support.

The hon. Gentleman made some powerful points about reintegration into school, which are supported by the evidence from the CLIC Sargent report. There should be agreement on how to assess when the pupil is ready to return and the school should provide an appropriate package of support to assist their reintegration. There should be objectives and plans agreed with parents, providers and schools to ensure successful reintegration. The Government published advice on that last July and further advice on health needs early this year. We have taken action and if he believes that there is more to be done, I or my colleague the children’s Minister, my hon. Friend the Member for Crewe and Nantwich (Mr Timpson), will be happy to speak to him further.

As the hon. Gentleman mentioned, the social aspects of reintegration are a huge issue for children and their families. While a child is absent, they should remain on the roll of their school and should be encouraged to feel part of the school. The schools should do everything possible to help the pupil keep in touch with their class, its work and other activities. Schools should also keep the pupil’s peers updated and help remind them that the pupil is still part of the school community.

[Mark Tami]

One point made in the CLIC Sargent review was that a school read out the child’s name in the register in every assembly. That was a powerful and important way of reminding the children that that child was still very much part of the school.

[Elizabeth Truss]

The hon. Gentleman makes a good point. The report contained some excellent examples of best practice. One that struck me was the friends who bought their fellow pupil an iPad so that they could keep in touch and had play dates so that the pupil felt that they were part of the school community while they were unable to attend. Unfortunately, the report also highlights other, less positive cases where there was bullying, perhaps caused by fear or lack of understanding. The Government believe that bullying is absolutely unacceptable and should never be tolerated. We have sent a strong message to schools on this, and we have shared advice and best practice. As part of the school’s approach to tackling bullying, it is also important that children with additional health needs are supported and not stigmatised or made to feel different. Schools need to ensure, through their behaviour and bullying policies and their re-integration plans, that these issues are considered.

The hon. Gentleman mentioned the children and families Bill. The special educational needs measures in the Bill are specifically about special educational needs. They deal with a specific issue which, by its nature, does not include all children with medical needs. However, we are ensuring that SEN policy, policy on children with health needs in mainstream schools, and alternative provision policy are sufficiently joined up and work in a complementary way. We are also involving the sector, including parents and representative bodies such as CLIC Sargent, in our policy development and implementation. My officials are meeting CLIC Sargent later this month. We also want our guidance to be living documents which reflect developments, so that everybody who works in this area feels a sense of ownership and understands the important examples of best practice and case studies which were raised in the report and in other work.

We are currently revising guidance for schools on supporting children with medical needs, including those with cancer. This complements the new guidance on ensuring a good education for children who cannot attend school because of health needs. We expect schools, employers, staff, parents and local health services to work together in the interests of the child, focusing on the outcome rather than the process.

A pupil with cancer might fall behind in their education, for example if they are absent to receive treatment. Our advice to schools and local authorities includes ensuring better communication and information sharing to ensure that all involved in the pupil’s education are able to support the pupil to catch up. The hon. Gentleman mentioned English and maths. We are doing more general work to ensure that children who fall behind are able to catch up at the relevant point in their school career, so at the end of primary school a year 7 pupil who has not met the expected standards in literacy and numeracy will be given extra support, such as further tuition, through an additional premium of £500. This will provide valuable support to bring them up to speed in advance of secondary school. I hope that that will also help the students to whom the hon. Gentleman referred in his speech.

A pupil who, earlier in their school career, needs additional help with reading will be identified through a year 1 phonics check and given extra support by their school to improve their reading skills. We want to make sure that pupils with cancer have the same opportunities as other pupils to take exams, that schools will support them in doing so, and that they are encouraged to continue at school if they are in the 16 to 18 age group that the hon. Gentleman mentioned.

While students are not at school, there are important forms of provision, including hospital schools and home tuition. The hon. Gentleman mentioned that five hours were not enough and were not flexible enough. My understanding is that local authorities have a legal duty to arrange suitable education for a child who cannot attend school because of their health. It is up to the local authority to determine the best way to do that, but we expect local authorities to take into account advice offered by the hospital or a consultant when making decisions about that. If the child’s health allows, we expect that provision to be full-time. If that is not happening in practice, it needs to be followed up. That is an important part of the Government’s policy.

I took the hon. Gentleman’s point that extra support should not necessarily stop when a child returns to school if the child needs such support. Again, this is about local authorities and health authorities working together.

In conclusion, I thank the hon. Gentleman for his excellent contribution to the debate, and I look forward to his participation in the upcoming Bill.

Question put and agreed to.