Children and Families Bill

Memorandum submitted by CLIC Sargent (CF 28)

 

Introduction

CLIC Sargent is the UK’s leading cancer charity for children and young people. We welcome this opportunity to provide written evidence to the Children & Families Public Bill Committee. The Bill seeks to make important changes to the framework for the provision of special educational support; we want to ensure that these changes meet the needs of children and young people with cancer, the majority of whom will have learning and other difficulties as a direct result of their cancer and its aggressive treatment.

Summary of key points

· Children and young people with serious and complex long-term health conditions, including cancer, which directly impact on their learning are a small but unfortunately hidden part of the current debate around special educational provision.

· Some children and young people with cancer go through treatment with only minor disruption to their education; others find themselves disadvantaged for years, as a result of aggressive and debilitating treatment and huge gaps in their education. Clearly their needs are very different and the new SEN framework must be flexible enough to provide effective support in all cases.

· The potential impact of cancer on a child or young person’s education is complex and multi-faceted. On the one hand, they will be disadvantaged as a result of missing school whilst they are on active treatment which can last up to three years. On the other hand, they are likely to have learning needs as a direct result of their cancer and its treatment. Whilst the impact of absence from school is often recognised, there is much less awareness of the impact of learning that cancer and its treatment can have.

· The Government has made clear its belief that "pupils with cancer deserve as good an education as any other pupil and poor health should never mean poor education". [1] A key part of this is ensuring that the provision of special educational support is responsive to the diverse range of needs of children with cancer and other serious health conditions.

· Further clarity is needed on the Government’s proposals for a new single school-based category of SEN and the rationale for moving away from School Action / School Action plus, particularly as the majority of children and young people with cancer will fit into this category.

· We will therefore be seeking to table the following amendments to the Bill:

o Clause 20 – to ensure the definition of when a child or young person has special educational needs explicitly includes those who have learning needs as a result of a chronic illness or long-term health condition.

o Clause 36 – to ensure that providers of alternative provision, including hospital schools and medical pupil referral units (PRUs), would be able to request a local authority to undertake an EHC needs assessment for their pupils.

1.
Background

1.1. CLIC Sargent is the UK’s leading cancer charity for children and young people, and their families. We provide clinical, practical and emotional support to help them cope with cancer and get the most out of life. Approximately 1,600 children aged up to 15 years and 2,000 young people aged 16 to 24 are diagnosed with cancer each year in the UK. [2] Fundamental to CLIC Sargent’s work is the belief that children and young people with cancer should be enabled to achieve their potential and that quality support in education is a crucial element to achieving this.

1.2. Unfortunately a cancer diagnosis means that these children and young people often experience significant disruption to their family life and learning with treatment sometimes lasting as long as two to three years. Even if a pupil has been successfully treated for cancer and has gone into remission, there are several reasons why there may still be genuine and long lasting late effects. N ine in ten children have told CLIC Sargent that their cancer diagnosis and treatment has made a difference to their school life [3] , demonstrating that cancer can significantly disrupt a child’s education.

1.3. Children with cancer can face a number of barriers and challenges in keeping up with school work, maintaining friendships and feeling included in school life. Some children who return to school will need significant or permanent additional support and may not be able to return to previous attainment levels . CLIC Sargent wants to see an education system that enables children diagnosed with cancer to receive the support they need quickly, and for as long as they need it, so that cancer does not unnecessarily impact on their education or their social and personal development. Unfortunately our research has shown that this support is not always put in place at present one in three CLIC Sargent nurses told us they do not think that there is sufficient educational support for primary school aged children with cancer when returning to school. [4]

1.4. We will therefore be seeking to table the following amendments to the Bill:

o Clause 20 – to ensure the definition of when a child or young person has special educational needs explicitly includes those who have learning needs as a result of a chronic illness or long-term health condition.

o Clause 36 – to ensure that providers of alternative provision, including hospital schools and medical PRUs, would be able to request a local authority to undertake an EHC needs assessment for their pupils.

2. The impact of cancer on learning

2.1. The vast majority of children and young people with cancer do eventually return to school, however, they might find it difficult to reintegrate back into school life after their cancer treatment. Our 2012 research , No child with cancer left out , found that 56% of parents said their child found it difficult to readjust to school work and activities after returning to their primary school. [5]

2.2. Even if a learner has been successfully treated for cancer and has gone into remission, there are several reasons why there may still be genuine and long lasting late effects. Research has confirms that overall survivors of childhood cancer experience a deficit in educational attainment compared with the general public, although this lower attainment is disproportionately found among survivors of particular cancers – in particular central nervous system neoplasm (including brain tumours) and those receiving radiation treatment. [6] Additionally some education providers struggle to accommodate the individual needs of children or young people with cancer who have returned after a period of absence and this can contribute to them achieving less than their peers in education.

2.3. CLIC Sargent’s 2010 report, The impact of cancer on a child’s world , found that children recognise that their absence from school has an impact on their level of academic achievement and their potential future career prospects, putting them at a disadvantage compared to their peers. Children told us that their skill levels had regressed since their treatment, and that they found core subjects like Maths and English far more difficult than they had previously. Likewise in 2011, 64% of 16 to 18 year-olds with cancer told us that they fell behind with studies or did not do as well as they thought they could have and 29% of all young people surveyed had to leave education altogether. [7]

2.4. Certainly the impact of long absence s from school as a result of undergoing treatment is an important factor in considering the needs of children and young people with cancer ; CLIC Sargent was therefore pleased to feed into recently published guidance setting out local authorities’ duties towards those children who cannot attend school because of their health. [8] However, it is much less well recognised that children and young people can have significant impacts on their learning as a direct result of the cancer itself , as well as the aggressive treatment , which should be defined as special educational needs . For example, the intellectual development of those children and young people who have had radiotherapy treatment or have been treated with certain chemotherapy drugs is likely to be affected. They will probably need a statement of SEN and additional support with their education. The effects on intellect are not necessarily static but may gradually become more noticeable over time. [9]

2.5. Some children and young people with cancer go through treatment with only minor disruption to their education; others find themselves disadvantaged for years, as a result of aggressive and debilitating treatment and huge gaps in their education. Clearly their needs are very different. Some will be able to return to school with minimal extra provision; some will require significant additional support for a period of time to enable them to catch up with their peers and to achieve their potential. Others will need formalised special educational needs (SEN) support for a long time, perhaps for their entire school career.

Case study – Josh’s story

Josh, 13, was diagnosed with acute lymphoblastic leukaemia in September 2004. His mum, Lynda, told us: "Josh was diagnosed a week into Year 1 at primary school, and missed half of his first year, which meant he had gaps in his learning of basic reading and writing. I noticed that he was gradually finding things more difficult and he was falling behind on things. Josh received extra support in primary school and they developed an Individual Education Plan for him, but this wasn’t enough for him to catch up sufficiently. I felt like I was always asking for work from the school. There just wasn’t the extra specific support there for him. Josh did receive ‘in house’ individual support from the school, but it just wasn’t targeted enough for his individual needs. So we pushed for individual pupil funding (IPF) because he was so behind. It took over a year to secure this funding. I just can’t understand why the IPF wasn’t given to us at an earlier stage. Josh had physical and psychological impacts from his cancer diagnosis and he obviously needed individual help tailored for him."

2.6. CLIC Sargent’s 2012 research, No child with cancer left out , which explored the impact of cancer on children’s primary education, found that only 56% of parents of children who had returned to school felt that their child had received sufficient support to enable them to resume as normal an education as possible [10] . One in five parents thought their child would benefit from more individual support.

2.7. F ew young cancer patients will have a statement of SEN, particularly whilst they are on treatment , as the long-term impact of their cancer or the treatment of it will be uncertain. In 2012 16% of parents surveyed told us that their child had a statutory statement of SEN as a direct consequence of their diagnosis and treatment. In addition, 25% of parents reported that their child has an Individual Education Plan and 31% reported that their child receives additional support from a SEN coordinator or a learning support assistant. How effectively children and young people’s needs are assessed on their return to school, and particularly whether they should receive the extra support they need, can be critical to the success of their reintegration.

3. The Children and Families Bill

3.1. The Children and Families Bill proposes a number of significant changes to provision for children and young people with SEN and disabilities. CLIC Sargent welcomes the ambitions of the Bill and we recognise that the reforms could provide opportunities for more integrated support and better information for parents. However, we believe that some areas of the Bill do not go far enough to support children and young people with complex long-term health conditions such as cancer.

Ensuring children and young people with cancer are supported

3.2. Despite the considerable impact that cancer can have on children and young people’s learning and educational attainment, the profile of children and young people with medical needs in education is at present very understated. We worry that the low profile of home and hospital education and of children and young people with medical needs in education contributes to a lack of continuity between the strands of work on-going within different Government policy teams. The Bill therefore presents an important opportunity to take a more joined-up approach to providing additional support as well as simplifying the system for parents and children and young people themselves.

3.3. The Government has made clear its belief that "pupils with cancer deserve as good an education as any other pupil and poor health should never mean poor education". [11] A key part of this is ensuring that the provision of special educational support is responsive to the diverse range of needs of children with cancer and other serious health conditions. At present, we know that this support is not always put in place and many of these children fall through the net.

3.4. The potential impact of cancer on a child or young person’s education is complex and multi-faceted. On the one hand, they will be disadvantaged as a result of missing school whilst they are on active treatment which can last up to three years. On the other hand, they are likely to have learning needs as a direct result of their cancer and its treatment. Whilst the impact of absence from school is often recognised, there is much less awareness of the impact of learning that cancer can have.

3.5. A key part of the problem is awareness; thankfully childhood cancer is rare, with only 3,600 new diagnoses per year, but this means that most teachers and schools will have little experience in supporting a child with cancer. This issue is exacerbated by the fact that often the child’s needs will not be immediately apparent, but learning can still be affected in the longer term as a result of chronic fatigue, attention and concentration difficulties and even psychological and emotional problems – all issues which can directly impact on their ability to learn. Many of these factors can result from the often aggressive treatment as well as the cancer itself.

3.6. Without better accountability and a joined up approach, we fear that children and young people with cancer could fall through the gaps and miss out on crucial support. A more coordinated approach to policy affecting children and young people with medical needs in education and the Children and Families Bill needs to be taken and the Government must better recognise this cohort of children and young people.

Supporting those with mild and moderate needs

3.7. A significant focus of Part 3 of the Bill, which outlines the changes to the SEN framework, focuses on the needs of those who will require statutory SEN provision through the new Education, Health and Care (EHC) plans. Whilst the Bill establishes clear duties on schools and other bodies for those children and young people with SEN but without an EHC plan, much of this will be set out in a new SEN Code of Practice which will be defined through secondary legislation.

3.8. We therefore welcome the commitment from the Government to publish a draft of the Code of Practice during the Commons committee stage of the Bill. We hope this will provide an opportunity to better scrutinise the potential impact of a move away from School Action / School Action plus towards a single school-based category of SEN. To date, there has been little detail from the Government on this important proposal and how this new category will interact both with local authority duties including the local offer. Given that the majority of children and young people with cancer are likely to have mild or moderate SEN, we are keen to ensure this new category enables appropriate support to be put in place. It is worth noting that at present best practice guidance recommends that children and young people with cancer are placed on school action as a matter of course. [12]

3.9. CLIC Sargent is an active member of the Special Educational Consortium (SEC) and we support the work they are taking forward on the Bill. In particular, we agree with SEC that local authorities’ local offers should be subject to minimum standards and that a national framework should be established so that no child or young person misses out on the crucial support they need. In addition, parents should be able to hold local authorities to account if the local offer is not delivered.

March 2013


[1] HC Deb, 10 January 2013, c576

[2] Cancer Research UK (2012) “Cancer Incidence by Age - UK Statistics”. Cancer Stats . Available at http://info.cancerresearchuk.org/cancers t a ts/incidence/age/

[3] CLIC Sargent (2012) No child with cancer left out http://www.clicsargent.org.uk/content/no-child-cancer-left-out

[4] ibid , p36

[5] ibid

[6] Lancashire, E et al (2010) Educational attainment among adult survivors of childhood cancer in Great Britain: A population-based cohort study . Journal of the National Cancer Institute, 102: 254-270

[7] CLIC Sargent ( 2011 ) Counting the costs of cancer http://www.clicsargent.org.uk/content/counting-costs-cancer-report

[8] Department for Education (January 2013) Ensuring a good education for children who cannot attend school because of health needs – statutory guidance for local authorities http://www.education.gov.uk/aboutdfe/statutory/g00219676/health-needs-education

[9] The Royal Marsden and the Specialist Schools and Academies Trust (2008) Pupils with cancer: A guide for teachers http://www.royalmarsden.nhs.uk/diagnosis-treatment/children-young-people/teachersguides/pupils-with-cancer.pdf

[10] CLIC Sargent (2012) No child with cancer left out http://www.clicsargent.org.uk/content/no-child-cancer-left-out

[11] HC Deb, 10 January 2013, c576

[12] The Royal Marsden and the Specialist Schools and Academies Trust (2008) Pupils with cancer: A guide for teachers http://www.royalmarsden.nhs.uk/diagnosis-treatment/children-young-people/teachersguides/pupils-with-cancer.pdf

Prepared 15th March 2013