Children and Families Bill

Memorandum submitted by Health Conditions in Schools Alliance (CF 26)

1. At least a million children of school age in England have a health condition. Many of them are struggling to achieve their full potential at school because they do not receive the right health support in school.

2. The current scope of the Children and Families Bill excludes these children with health conditions and we would like to see this amended so that they do not get left behind.

3. We welcome the Government’s aim to support families in balancing home and work life and ensure that all children and young people can succeed. Key to this is the support of children in schools.

4. Putting appropriate health support in educational settings will give children with health conditions an equal opportunity to achieve alongside their peers. It will also enable them to participate fully in lessons and school life and achieve the best possible physical, mental and economic well-being later in life.

5. We are concerned that the Bill undermines this aim by omitting any consideration of support for children with health conditions.

6. The Bill should be strengthened to ensure support for children and young people with specified health conditions who are not classified as having Special Educational Needs or disability.

7. Evidence from families collected by members of the Health Conditions in Schools Alliance shows that the current voluntary approach does not go far enough. While some schools provide good support for children and young people with health conditions, many do not, and the end result is a lottery of support for children with health conditions.

8. As a result of this lottery, many parents are forced to give up work, or reduce their hours, in order to support their child at school. This can then have a detrimental effect on the socio-economic wellbeing of the entire family.

Why change is needed

9. Many children with health conditions experience barriers to academic achievement and social isolation because their needs are not properly addressed or understood:

9.1 Excluded from lessons such as PE, or left out of school trips, extra-curricular activities and social events.

9.2 Denied support and help to catch up with lessons they have missed because of ill health.

9.3 Sent home unnecessarily after a brief health event (for example a seizure, faint, blackout or fall).

9.4 Made to eat alone if their food needs are different.

9.5 Denied access to their medicines when they may need them because the drugs are ‘safely locked away’.

9.6 Experience bullying as a direct result of their health condition.

10. Diabetes:

There are 29,000 children with diabetes in the UK [1] . A Diabetes UK survey found [2] :

· In only 29 per cent of cases do school staff help with insulin injections, with 66 per cent of help coming from parents and a further 3 per cent from relatives.

· In 47 per cent of cases, someone other than a member of school staff helped young people with blood glucose testing, including parents in 42 per cent of these cases.

· 35 per cent of young people responding said their parents either had to give up work or reduce their hours to support them with their diabetes.

· 46 per cent of young people do not have a healthcare plan for managing diabetes at school. Of those with a healthcare plan, 17 per cent did not feel confident that it was implemented.

11. Asthma

1.1 million children are currently receiving treatment for Asthma [3] . Asthma UK has found that [4] :

· Only 24% of teachers would be completely confident they knew what to do if a child in their class experienced an asthma attack.

· 87% of children and young people with asthma had missed at least one day of school because of their asthma.

· 49% had problems joining in with general lessons.

· 48% had problems going on school trips.

12. Epilepsy

Epilepsy affects an estimated 63,400 children and young people aged under 18 in the UK [5] .  On average, there will be one child with epilepsy in every primary school and five in every secondary school.

12.1 A survey, by Epilepsy Action (May 2012) revealed [6] :

· Less than 40 per cent of schools have a written epilepsy policy.

· A quarter of teachers had not had epilepsy training in the last three years.

· Almost a third of teachers were not aware that pupils with epilepsy may be entitled to receive extra time in exams.


12.2 A survey of 214 parents of children with epilepsy revealed [7] :

· Two thirds don’t think their child’s school is doing everything it can to understand epilepsy and support their child.

13. Migraine

Children with migraine take on average between 32 days and three months off school in a school year due to their migraine, in comparison with the general population who take between 3 and 13 days.  The difficulties children with migraine face include:

· Lack of support to catch up on work missed due to migraine.

· Being denied access to medication by school staff at the onset of a migraine.

· Exclusion from trips and activities due to poor attendance.

14. Heart Conditions

Congenital heart disease affects about one in every 145 babies born in the UK. In 2011 there was between 4000 and 5000 babies born with heart conditions. [8] Through advancements in medical science 85 per cent of those born with congenital heart disease now survive long into adulthood [9] and as a result will move through the school and education system.

Children and young people with heart disease have varying needs depending on the type and seriousness of their specific heart defect. Many will have learning difficulties and delays and those who do not may often have varying levels of ongoing health needs related to their condition.

15. Providing the necessary support to children with health conditions in education settings will have both immediate and long term benefits. These include:

15.1 Improved health and education outcomes for the million children with health conditions.

15.2 Reduction in the financial burden on the NHS through improved health.

15.3 Children who are able to participate fully in learning.

15.4 Children who are helped to achieve the best possible physical, mental and economic well-being later in life and realise their full potential.

15.5 Removal or reduction of the socio-economic burden on the state, and on parents who have to give up their jobs or reduce their working hours in order to care for children at school.

16. To ensure all children with health conditions get the right support at school, the Children and Families Bill should make provision for this and prevent them from falling again through the gaps in legislation. This would include the following requirements:

16.1 Schools should produce and implement medical conditions policies. Such policies should specify aims, objectives, actions and outcomes.

16.2 Appropriate school staff should receive training to enable them to support children with health conditions.

16.3 The school health workforce should be supported so that they can effectively and safely support children and schools.

16.4 NHS bodies and local authorities should have a statutory requirement to help schools fulfil their responsibilities.

16.5 School inspections should look at how a school supports children with health conditions and what outcomes those children have, as part of well-being indicators.

17. The Health Conditions in Schools Alliance are calling for the following new clause to be added to the Children and Families Bill to ensure children with health conditions are not forgotten:

Standards for support of children and young people with specified health conditions, not classified as having special educational needs or disability:

The governing body must produce and implement a medical conditions policy that defines how it plans to support the needs of children with specified health conditions.

The medical conditions policy must include provision about:

a. The means by which records of the specified health conditions of children at the school are to be recorded and maintained; and

b. The preparation of an individual healthcare plan for each child with a specified health condition which sets out the needs of that child arising from that condition

The medical conditions policy must include requirements relating to the provision of appropriate training for school staff to support the implementation of individual healthcare plans.

In preparing an individual healthcare plan the governing body must –

Consult the parents of the child concerned and, where appropriate, the child about the contents of the plan; and there shall be a duty on NHS bodies to co-operate with the governing body in its preparation and implementation of individual healthcare plans.

Local authorities and clinical commissioning groups must co-operate with governing bodies in fulfilling their functions under this Act.

The Secretary of State may by regulations define ‘specified health conditions’ for the purposes of this section.

For the purposes of this section ‘NHS bodies’ has the same meaning as in the Health and Social Care Act 2012

The Children and Families Bill provides an opportunity to give children with health conditions essential support in school. The Bill should be strengthened by the addition of this clause to give parents the certainty that their children will receive at school the support and protection they need.

For further information, please contact Diabetes UK’s Public Affairs Team by emailing or or calling 020 7424 1151 or 020 7424 1858.

The Health Conditions in Schools Alliance is a rapidly growing alliance of over 30 organisations working on behalf of these children.

Members of the Health Conditions in Schools Alliance supporting this briefing

Anaphylaxis Campaign

Migraine Trust

Association of Young People with ME

MS Society

Asthma UK

National Blind Children's Society

British Heart Foundation

National Centre for Young People with Epilepsy

British Pain Society

National Society for Epilespy

Cardiac Risk in the Young

National Voices

CF Trust


National Children's Bureau

Family Lives

Children's Heart Federation


Coeliac UK


Epilepsy Action

Sickle Cell and Young Stroke Survivors


The Dystonia Society


The Stroke Association


UK Children with Diabetes Advocacy Group

Little Hearts Matter

Vision 2020 UK


Young Minds

Migraine Action

Tourettes Action

The Neuro Foundation

March 2013


[1] Diabetes UK, Diabetes in the UK 2012

[2] Diabetes UK, survey of the views and experiences of children and young people – Diabetes UK members (2009)

[3] Asthma UK, Missing Out p1, (2009)

[4] Asthma UK, Missing Out p4 (2009)

[5] Epilepsy Action, Survey, , (2012)

[6] Ibid

[7] ibid

[8] British Heart Foundation, 50 Years at the Heart of Health, pg124-125

[9] NHS figures,

Prepared 15th March 2013