Children with Cancer should not have to appeal for special educational help

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Children and young people diagnosed with cancer are  too often left  without the support of an Education and Health Care Plan (EHCP) or statement of SEN or are being left waiting unnaceptable amounts of time for the right support.

For a child, education absorbs much of their world. The progress or lack thereof is often clearly linked to their sense of happiness and self esteem. Slipping behind or the prospect of examination failure can be emotionally absorbing such that in the case of children little else may matter as much..

This needs to change. The law and code of practice needs to change so that

A. Children with cancer undergoing chemo and radiation therapy should be automatically entitled to an assessment of their educational needs as opposed to delay and their cases left to local authority discretion.

B. The time limits governing learning assessments should be shortened for cancer patients so that the process should not take longer than six weeks from start to finish.

C. The code of practice ought to provide a specific presumption favouring the grant of education and health care plans and statements of SEN for cancer patients undergoing chemotherapy.and radio therapy.

These children and young people should not be forced to appeal to a tribunal for help. Children and young people along with their parents will frequently be deprived of  the  physical emotional and financial  reserves needed to take on such an organisational inertia.

Although the current law allows for children and young people with cancer to receive an assessment of their needs, too many are being denied the protection of an EHCP or even an assessment. The current law allows for local authorities to determine when an EHCP is necessary but many are using this discretion to the disadvantage of cancer patients.

Cancer research charities around the world generally recognise the impact of chemotherapy in regard to cognitive functioning. "Chemo brain" or "chemo fog" is widely understood to frequently develop among cancer patients. However it appears this is not always appreciated by local council special needs departments. Yet even the most basic research into the effects of cancer will lead to conclusions that learning difficulties are very common in children receiving both chemo and radiation therapy. Lower IQ scores over time can vary depending on the intensity of the treatment but common symptoms include attention and concentration difficulties, reduced processing speed and executive functioning difficulties. Further the development of short term memory deficits are commonly noted.

But that is not all. Cancer treatment can have an impact on vision and hearing and even a child's muscle and bones. The impact on mental health is also not insignificant. Studies have found survivors of childhood cancer are likely to develop mental health symptoms including anxiety and depression and even suicidal thoughts.

Children will frequently experience longer term effects such that prominent cancer charities record:- 

"For the rest of the childhood cancer survivor’s life, doctors should watch for things like pain, tiredness, and anxiety, as well as other possible signs of late effects. Physical and emotional effects may linger"

What does the law and code of practice say and why does it need to change?

The law in relation Education and Health Care Plans and statements can be found in the Children and Families Act 2014 as well as in the Education Act 1996. The 2014 regulations in England and the 2001 regulations in Wales are also relevant together with the Codes of Practice.

The codes of practice in both England and Wales recognise that cancer is a disability but states at (XViii). 

" Children and young people with such conditions do not necessarily have SEN, but there is a significant overlap between disabled children and young people and those with SEN. Where a disabled child or
young person requires special educational provision they will also be covered by the SEN definition."

The code offers little more by way of specific guidance and neither does it advocate for child cancer patients being given any particular priority.

Under the current law a child with learning difficulties seeking an EHCP in England or a statement in Wales may have to wait six weeks for merely an initial assessment decision. A further 10 week wait may follow before children may learn whether they are to be given an EHCP or statement.. Taking into account any dispute that may arise in regard to its contents , at typical tribunal , might mean a further six months is spent. On average it would not be unusual for a whole year to be spent dealing with this if one considers it from start to finish.

The average chemotherapy treatment plan can last anything from two to six weeks.

It is therefore a fact that Children with cancer cannot wait.

Although cancer is recognised as a disability under the Equality Act it does not follow that children with cancer will be assessed for learning impairments arising out of the condition itself or from the effects of chemotherapy or other treatment.. The law affords the council this discretion to refuse at every stage starting initially with the initial assessment. In practice therefore , it might result in waits for up six weeks and then if there is a dispute another few months waiting for an appeal. We then must add the time it might take to challenge a decision thereafter to refuse the issuing of a plan or equivalent , or the time necessary to appeal an inadequate plan. All this time may be lost. It is not unusual for a child to have to wait two years from start to finish before securing an adequate plan.

All children with cancer whether undergoing or having undergone chemotherapy should be automatically entitled to an assessment. The time limits thereafter governing the issuing of any plan for cancer patients should be shortened to allow for quicker decisions to be made. We believe that it is reasonable for the law to provide a much shorter time period in such cases from the current 16 weeks to a six week limit in such cases.

Further that the SEN code of practice should be amended to allow a presumption in favour of issuing a plan or a statement of SEN to such child cancer patients rather than leaving councils with the discretion.

Childhood cancer is already traumatic enough for both the child and the family. These children and their parents should not have to face additional stress of having to wait whilst they worry about the possibilities of educational decline. They need our fullest support and this requires a change in both the code of practice and the law to give them a better chance of both speedier and more sensible decision making.

Help us secure change for these children and young people. Change to relieve an unnecessary burden that frequently rests upon their shoulders.