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of everyone affected by epilepsy

Children and Families Act

Campaign to ensure that children with epilepsy receive vital support in education

Update October 2013

Children & Families Bill - Lords committee stage

Last week we had exciting news for school children with epilepsy. The government announced that it intends to place a legal duty on schools in England to provide support for children with health conditions.

On Wednesday 23 October the relevant section of the Children and Families Bill reached the Lords committee stage. A number of peers spoke in favour of placing legal duties on schools, with many referencing epilepsy in their speeches.

First to speak was Lord Low of Dalston, who acknowledged the sheer amount of amendments that had been tabled. Next to address the committee was Lord Storey. Epilepsy Action has supported Lord Storey during the passage of the bill by providing research and notes about your experiences in education. Lord Storey referenced this support with the following: 

“I say straightaway that some schools provide significant support to children with health conditions, but it is obvious that other schools do not provide any support at all. That means that there are inconsistencies in how children are supported, depending on the school that they attend. Those inconsistencies have been highlighted in a report by the charity Epilepsy Action, which commissioned research specifically for this bill about children and young people with epilepsy who are either currently in full-time education or who have left full-time education in the past 10 years. I will not read all the figures, but the survey found that only 14 per cent of those currently in full-time education said that their education establishment had a written plan for their needs.”

Lord Storey also thanked the government for tabling their amendment, but emphasised the importance of getting the guidance for schools right. This point was raised a number of times by different speakers across the meeting. Peers also asked the government to bring forward the draft guidance so that it could be considered before the bill reached report stage.

Lord Kennedy of Southwark stood to talk about his amendment, which was supported by the Health Conditions in Schools Alliance, of which Epilepsy Action is a member. Lord Kennedy also welcomed the government’s amendment, but stated that he didn’t think that it went far enough. He spoke in detail about the issues that children with health conditions face. He then proposed training for teachers and other staff members to provide better support in schools.

Lord Patel and Baroness Benjamin both mentioned children with epilepsy in their speeches. Lord Patel stressed the importance of schools involving children and their parents when planning care.

Lord Nash, Parliamentary Under Secretary of State for Schools responded to the comments made. He agreed that “children and young people with medical needs should not miss out on a full education simply because they have a medical condition”. Lord Nash also addressed the concerns raised around the planned guidance for schools on how best to support children with health conditions. He made it clear that organisations such as the Health Conditions in Schools Alliance would be involved in the making of the document. A draft version of this guidance should be ready for the report stage of the bill later this year.

Lord Nash rounded off the discussions by stating: “The guidance will make clear our expectation that schools, local authorities and health professions work together in the interests of the child”.

How will the Children and Families bill help children and young people with epilepsy?

  •  Schools in England will have a responsibility to make sure that children with health conditions do not miss out on a full education.
  • The government will produce guidance telling schools what they need to do. This will cover staff training, school policies and individual healthcare plans.


Children & Families Bill – A Campaigning Success!

Epilepsy Action and the Health Conditions in Schools Alliance have been campaigning to promote the health needs of children in England’s schools. We have worked to guarantee that the Children and Families Bill updates the law on providing care and support in schools for children with health conditions. So far, the bill has not given consideration to these children. We have been campaigning hard to change this. However, so far the government have stated that non-statutory guidance would be enough to make sure that children with health conditions are supported.

Our campaigning has now paid off! The subject of supporting children with health conditions in schools gained cross-party backing. And today Michael Gove, Secretary of State, Department for Education has proposed an amendment to the Children & Families Bill on behalf of the government. This amendment will place a requirement on all state schools to make arrangements for supporting pupils with medical conditions. It will be debated along with other proposals when part three of the bill goes to the Lords Committee stage on Wednesday 23 October 2013.

Mr Gove has acknowledged that “whilst a vast majority of schools take these issues seriously, it is clear some families have had poor experiences”. He goes on to explain that the new duty will “help schools to ensure that they are taking reasonable action to support children with medical conditions, where necessary”. Mr Gove also acknowledges that such a legal requirement on schools will give parents confidence that their children will be supported while they are at school.

The proposal also refers to the drafting of statutory guidance, which will take place once the bill has been passed. Mr Gove has stated his department’s intention to work with health organisations, parents and school staff, to deliver the document. This will be subject to a public consultation in the new year. It is really important that they get this guidance right – a legal duty on schools to use the guidance is only as good as the guidance itself. The government will want to hear about good practice in schools. So please get in touch with us and share your positive experiences - if you haven’t already.

Being proposed by the Secretary of State, Department for Education, and backed by the government, this amendment is almost certain to be passed. This is fantastic news. Epilepsy Action is looking forward to working with the Health Conditions in Schools Alliance and the Department for Education. We want to make sure that the statutory guidance is fit for purpose.

Vikki Brown, policy and campaigns officer at Epilepsy Action, said: “We are pleased that our concerns have be listened to and that this amendment has been included in the Children and Families Bill. The amendment is an important step in ensuring that children with epilepsy and other long-term health conditions are fully supported in schools.

“We hope that having this legal duty in place means that all children with epilepsy will get the support they deserve to help them to reach their full potential in school. This will largely depend on the quality of the guidance produced as a result of this amendment. We would welcome working with Mr Gove and the Department for Education to make sure that the guidance clearly outlines exactly what schools must do to fully support children with epilepsy.”

Part three of the Children and Families Bill will be debated in the Lords on Wednesday 23 October 2013. An overview of the debate will be posted here soon afterwards.

Update August 2013

Help Lord Storey improve the Children & Families Bill

Epilepsy Action has been approached by Lord Storey to help him improve the Children and Families Bill.  Lord Storey is leading on parts three and five of the bill at the committee stage in the House of Lords.

If you, or someone you care for is in full-time education*, or has been in full-time education in the last 10 years, please help us to help Lord Storey, by sharing your experiences in the survey below.

Thanks to all of you who completed our survey about your experiences in full-time education. We will now use this information to inform our work and provide a briefing to Lord Storey.

Children and Families Bill – House of Lords

The second reading of the Children and Families Bill in the House of Lords took place during June and July. The second reading is a chance for peers to say which parts of the Bill they like, and how they feel it should be improved. The debate was lively and went on for nearly six hours. Almost 50 peers spoke during the debate, and it was clear that the issues around Special Educational Needs (SEN) are important to many. The amendment put forward by the Health Conditions in Schools Alliance, of which Epilepsy Action is a member, was mentioned more than once. A number of the speakers talked about the experiences of their own children and grandchildren.

Lord Storey, who is leading on parts three and five of the bill at the committee stage described the amendment as “eminently sensible”.

Epilepsy Action continues to work with the Health Conditions in Schools Alliance to influence to influence this act and encourage the acceptance of the amendment. The committee stage begins on 9 October 2013.

Children and Families bill: Third Reading Update

The third reading of the Children and Families bill took place in the House of Commons on Tuesday 11 June 2013. The amendment put forward by the Health Conditions in Schools Alliance of which Epilepsy Action is a member attracted cross party support and encouraged strong debate. A number of MPs from different parties backed the amendment including Sharon Hodgson MP, John Healey MP and MP Graham Stuart, Chair of the Education Select Committee.

However, the amendment was not put to the vote. The government’s response from Children’s Minister, Edward Timpson was:

“It is right that every child with a long-term health need is entitled to a high-quality education. Their needs must be identified and addressed promptly, so that they can achieve their full potential. Imposing further statutory duties on schools to ensure that is not necessarily the answer, however.”

Mr Timpson indicated that he recognised that practice in schools needed to improve stating that some practice is “still below the level that we should be seeing”. He further referred to the reviewed ‘Managing Medicines’ guidance due out later this year, claiming that it will further clarify schools’ responsibilities.

What next?

The bill went to the House of Lords for the first reading on 12 June. The second reading will take place on the 2 July. This means that there is still time to press for the amendment to be included. Epilepsy Action, as part of the Health Conditions in Schools Alliance will continue to campaign to help ensure that children with epilepsy receive vital support in education. We will be contacting peers to encourage them to support the amendment. Please contact us if you would like any further information.

6 June 2013

Help us campaign for an amendment to the new bill. We want to ensure that children with epilepsy receive vital support in education.

Epilepsy Action is currently working as part of the Health Conditions in Schools Alliance to influence the Children and Families Bill which is currently being debated in parliament.

Part of the Children and Families Bill will update the law on providing care and support in schools for children with special educational needs (SEN). The bill does not give consideration to children with health conditions. This means that as the bill currently stands there is no procedure for supporting children with epilepsy - unless they also have an identified special educational need.

The Health Conditions in Schools Alliance has provided evidence to the bill committee. This evidence shows that while many schools provide good support for children and young people with health conditions, many do not. This lack of support can lead to social exclusion and lower academic attainment. In some cases the wellbeing of children and young people with health conditions is put at unnecessary risk. This was the case for the child below.

Case Study - Parent with an eight year old

My son, eight, was diagnosed with childhood absence epilepsy in 2010 at the age of six (his class teacher at the time had not noticed). He is also dyslexic and I believe his progress at school has been impacted by his epilepsy.

Despite my requests for extra help with literacy, the school identified his absence epilepsy as a ‘medical condition’ only. This meant he did not warrant any other kind of assistance other than standard procedure in the event of a major seizure (which he is unlikely to have). It was down to me to arrange meetings to discuss my son’s condition, and it was down to me to organise attendance by an epilepsy specialist nurse from a neighbouring county (as there is not one in our area). I provided evidence to the school that absence epilepsy can have a detrimental effect on memory and learning. Eventually, the school recommended that I seek a referral to a community based paediatrician. I also paid to have my son privately assessed by an educational psychologist, which confirmed that he has a specific learning difficulty requiring extra assistance.

My son will soon be nine, with a reading and writing age still well below his average intelligence level. He has recently received some extra help at school, but this is ‘too little, too late’. The older he becomes, the disparity is more obvious among his peers and with his younger sibling. It continues to be difficult to secure additional support at school, because my son does not fit an extreme case to apply for a statement.

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