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Written evidence from Kathryn August

 

 

  1. This submission is from Dame Kathy August (former Head Teacher and Academy Principal and currently Non Executive member on the board of OFSTED), supported by or in collaboration with Tutor Trust and Maggie’s Manchester and with funded staff from CLIC Sargent, Teenage Cancer Trust, and The Christie Hospital.

 

 

Executive Summary

 

  1. This submission recommends that when a child and/or young person (CAYP) receives a diagnosis of cancer, an Education Health & Care Plan (EHCP) becomes an automatic entitlement for them.

 

 

Cancer treatment and its after-effects create a Special Educational Need (SEN) currently unaccounted for in education.

 

  1. Approximately 4000 children and young people are diagnosed with Cancer every year.

 

  1. Cancer is not just one, homogeneous illness. There are approximately 15 ‘common’ cancers that can be found in children and young people.

 

  1. Cancer is a protected characteristic, as are serious conditions such as Diabetes, Epilepsy, Cystic Fibrosis, and Sickle Cell Anaemia.  But cancer is different to these for the following reasons:-

 

5.1.                      It is often diagnosed late with symptoms having already caused absence from school/college, creating a gap in learning and a need for support.

 

5.2.                      Research has found evidence that those who have cancer treatment are burdened with this special educational need. It has also found that, as a result, the education entitlement of many children and young people is compromised.

 

5.3.                      The side effects of treatment for cancer can remain for many years.

 

  1. Individual Health Plans (IHPs) focus on preventing absence from education with schools supporting the learner to ‘self manage’ their condition.  When delivered effectively by schools, this is sufficient to safeguard the education of learners with, for example, Diabetes, Asthma, Epilepsy, Sickle Cell, Cystic Fibrosis.

 

  1. Individual Health Plans (IHPs) are not appropriate for learners with cancer.

 

7.1.                      Self management of the treatment for cancer is not an option.

 

7.2.                      The management and dispensation of medication is the preserve of specialist trained clinicians only.

 

  1. Education Health and Care Plans (EHCP) are intended for children and young people who need more support than their school or other educational setting can provide, as with the above.

 

  1. The process of requesting an EHCP requires the involvement of other agencies; research shows these agencies do not always understand the impact of cancer treatment on one’s ability to learn.

 

  1. The process, gatekeeping and length of time it frequently takes to apply for and secure an EHCP exacerbates the anxiety of the children, young people and families affected, further extending learning gaps.

 

  1. The issue of accessing educational entitlement for children and young people with cancer is most problematic with secondary schools.

 

  1. Appeals are lengthy and expensive for the provider, yet considering the number of children and young people affected – around 4000 – it is likely to be cost neutral or of minimal impact financially.

 

  1. EAS was initiated by Dame Kathryn August who, as a patient of The Christie Hospital and user of Maggie’s Manchester, became aware of the educational disadvantage children and young people with cancer can suffer. Having been a professional educator for forty years, she was profoundly disturbed to discover that there was no automatic right for such young people to have an educational health care plan.  She spoke with specialist support and medical staff and discovered how much additional work was created from them trying to broker educational support on behalf of young people.  This is work that they should not be expected to carry out. 

 

  1. Research carried out by CLIC Sargent and others reveals the impact that a cancer diagnosis can have on a young person’s education and life chances.  Having direct and personal experience of chemotherapy, the reality of cognitive impairment was obvious to Dame Kathy.  As an educator it was clear how that would impact on young people at key educational stages in their lives.  Educational lawyers advised that irrespective of the impact of treatment on cognitive processing, children and young people with cancer are still required to prove they need an EHCP. Dame Kathryn’s own professional view – that a SEN came about from experiencing cancer treatment – was confirmed by specialist medical staff.  As a result, EAS was formed and agreed to pursue a change in SEN legislation to make EHCPs automatic for young cancer patients.
     
  2. We believe this is essential, as without the ‘safety net’ of an EHCP, children and young people are being deprived of the education they’re entitled to.  The disadvantage created undermines legislation that protects equality, as well as the fact that cancer is classed as a disability and is a protected characteristic.

 

 

Recommendation

 

  1. We recommend that upon being diagnosed with cancer, an EHCP should be triggered automatically as the required special educational need is created by essential and increasingly life-saving treatment.

 

  1. The purpose of an Educational Health & Care Plan (EHCP) is outlined as follows:

 

17.1.                 ‘An EHCP is for children and young people aged up to 25 who need more support than is available through special educational needs support.  EHC plans identify educational, health and social needs and set out the additional support to meet those needs.’

 

  1. CAYP with cancer face frequent and regular discrimination. Below is a summary of some of the case studies collected during the production of this submission. Whatever education CAYP receive appears to be solely on the understanding, knowledge, willingness and empathy of the schools they attend.

 

 

Supporting Empirical Information
 

  1. The following has been provided by two important groups.  One is a group of young people currently being or having been treated in the past for cancer who wanted to share the difficulties that they experienced in their education.  The second is a group of specialist pediatric oncologists currently practicing at The Christie Hospital and the Manchester Royal Infirmary.

 

Case Study A

 

  1. ‘A’ was diagnosed with a brain tumor at 8 years old. After an operation and treatment, she was cancer free for a number of years until the cancer returned.

 

  1. Her father’s account of their experience makes for uncomfortable reading. Whilst he describes the unstinting work of medical staff to treat and cure ‘A’, his daughter’s secondary school behaved in a way that was at best insensitive and at worst intimidating. Upon starting Key Stage 4, the school requested that he attend a meeting. At the meeting, he was told that the school was not equipped to cope with his daughter’s illness, i.e. they did not have nurses on site and that they would be recommending that she transfer to [hospital school].  Whilst the [hospital school] has a good reputation, ‘A’ and her father wanted her to remain in mainstream education with added support, as that was what she felt able to do.

 

  1. ‘A’s father asked about an EHCP and was told that the school would not be able to provide this, for they did not believe ‘A’ would be eligible and felt the process would require considerable time and resources. ‘A’ and her father refused to accept being transferred. ‘A’s father interpreted that repeated school references to time was a coded inference that ‘A’ was unlikely to survive, therefore there was little point in the school expending resource. Instead, ‘A’s father pursued an EHCP for her by himself, which was successfully secured. For the rest of her time at the school however, she was required to sit in the Learning Support Unit rather than be integrated into classes. Much of her work she did on her own. Despite this, ‘A’ achieved a Level 5 English GCSE. ‘A’ is now a student at a FE College and reports that provision is better informed, supportive and meets her needs.

 

Case Study ‘B’

 

  1. ‘B’ was in Year 10 of secondary school when he was diagnosed with Lymphoma. He was unable to attend in Y11 and could not sit any GCSEs.  A year after his diagnosis, ‘B’ was anxious to return to education and to get his life back on track. His secondary school provided information and predictions on the GCSE grades he would achieved had he not been ill. As a result, the Sixth Form college he applied to accepted him onto his chosen three A level courses.

 

  1. However, ‘B’ was told he would have to sit GCSEs in English and Maths and would have to join a class of ‘re-sit’ students in order to do these. ‘B’s mother described the anxiety he experienced when returning to study. The relief and excitement of being able to get back to normal was undermined by the fear of the cognitive impairment caused by treatment and medication, especially with regards to his GCSE Maths and English.

 

  1. As a predicted Level 9 student in both subjects, it might be assumed that the prospect of being in a class of ‘re-sit’ students would not be problematic. However, the effects of chemotherapy compromise the characteristics of effective learning e.g. difficulty concentrating, memory impairment, tiredness, a feeling of mental fogginess (Macmillan Information and Support).

 

  1. What ‘B’ needed in this situation was access to individual tuition for Maths and English, rather than being in a ‘re-sit’ group.  Had ‘B’ been given an EHCP after being diagnosed, the required support would have been an integral part of his studies. But the college was not required to fund this and so ‘B’ was left with additional anxiety which may have had a potential negative impact on his life chances.

 

Case study ‘C’

 

  1. ‘C’ is now 15 years on from treatment and cites her experiences in secondary school as having had a negative impact on her life chances.

 

27.1.                 “Had the institutions taken time to educate themselves to understand how cancer affects young people, the damage done … wouldn’t happen… It should be the responsibility of the educational establishment to understand cancer and how it affects young people from the point of the diagnosis …. late effects vary from person to person and happen at different times.  They can’t be packed into a ‘neat box’ like diabetes, epilepsy or more other common conditions, making it more difficult to understand.  But that doesn’t mean it shouldn’t be ignored”

 

  1. Research Evidence from ‘Coping With Cancer Supporting Young People’s Resilience’, provided by CLIC Sargent, Teenage Cancer Trust and others, confirms that the above Case Studies are not unusual and are in fact common.

 

  1.               The provision of an EHCP will not be a panacea.  However, immediate access to one would recognise the educational need created by cancer and its treatment.

 

  1. CLIC Sargent’s, ‘Hidden Costs,’ Executive Summary finds that:-

 

30.1.                 79% of young people felt cancer had a serious impact on their emotional wellbeing

 

30.2.                 70% of young people experienced depression during their cancer treatment

 

30.3.                 90% of young people experienced anxiety during their cancer treatment

 

30.4.                 83% of young people experienced loneliness during their cancer treatment

 

30.5.                 42% of young people experienced panic attacks during treatment
 

  1. As shown in CLIC Sargent’s report ‘No Teenager With Cancer Left Out’, the description provided by Student ‘A’ is not unusual, i.e. that of being placed in a Learning Support unit:

 

31.1.                 “several of the young people we spoke to who learnt in these units did not enjoy … the environment as it made them feel isolated and vulnerable.  Some suggested that tailored or 1:1 support to help fill in the gaps in their learning would have been a better approach.”

 

  1. It might be expected that triggering an EHCP after a cancer diagnosis would specify the need for support to be tailored so as not to exacerbate the problem, instead mitigating against possible emotional and mental distress.

 

  1. A focus group was held on 15th August 2018 by a member of staff funded by Teenage Cancer Trust at The Christie Hospital’s Teenage and Young Peoples’ Treatment Centre.  This group was made up of young people, currently being treated or having recently stopped having treatment for cancer. They reported that:-

 

33.1.                 Primary schools were better than secondary schools in their support of young people with cancer

 

33.2.                 Experiencing a ‘no caring’ approach was common e.g. Attendance Officers visiting the house despite being informed of their diagnosis and treatment

 

33.3.                 An attitude from some staff of “You’ve finished treatment … you are better now … so you need to get on with things”

 

33.4.                 An automatic exclusion from school trips

 

33.5.                 Students wanting to be supported to stay in schools when well, as much and often as possible – “Can’t schools help young people to stay in school?”

 

33.6.                 Schools and their staff need to be prepared to find out more about the impact of the condition, if and when they have a student with a cancer diagnosis

 

33.7.                 (A): “A negative I got was being slapped with a ‘U’ grade rather than a “not appropriate” …  I think teachers shouldn’t grade a student’s work if they are going through treatment, unless they ask for a grade.  It may be difficult to do but it looks “crap” on your overall report if you have been given a low grade when you have not had the chance to get your own work to its full potential.”
 

Paediatric Oncologist Advice
 

  1. Professor Bernadette Brennan, Royal Manchester Children’s Hospital and Dr Martin McCabe, Teenage & Young Adults Service (TYA) The Christie.

 

  1. Both Professor Brennan and Dr McCabe are experienced specialists in their field. They quoted the current figure of approximately 4,000 children and young people being diagnosed annually with cancer, 80% of which will require treatment such as chemotherapy and radiotherapy. The most common childhood cancer is that of the brain – with aggressive brain tumours, the treatment of steroids and chemotherapy has an irreversible effect on cognitive development. The impact these treatments have on cognitive processing is witnessed 12 hours after the first treatment. The need for an EHCP therefore exists from the moment of diagnosis and first treatment. As CYAP cancer is often a late diagnosis, treatment happens very quickly and so the impact and need for the EHCP becomes immediate.

 

  1. In some locations, hospital schools provide outstanding support for children aged 5 – 16.  However, if all their cohort were allocated an EHCP, it would benefit both patient and hospital school when the transition before and after treatment took place. It would protect the educational chances of those CAYPs. Dr McCabe identified the Year 11 to Year 12 transition as a critical time for his patient, as hospital-based educational support ceases for post-16 year olds.  
     

 


Concluding Remarks 

 

  1. A diagnosis of cancer for anyone is life changing. Children with a cancer diagnosis have their lives affected disproportionately. Increasingly due to medical developments, more CAYPs are surviving a cancer diagnosis. This makes the need for an EHCP to be an entitlement all the more necessary. Education support can help individuals maintain career ambition, provide routine and mitigate the impact of cancer on a young person’s life chances.
    For these reasons, this submission recommends that as a child and or young person receives a diagnosis of cancer, an Education Health and Care Plan becomes an automatic entitlement for them.

     

March 2019