Diabetes UK Annual Professional Conference 2008

Working With Parents As Partners

Jackie Jacombs UK CWD

Taking Diabetes to School

Taking Diabetes to School - an injection of common sense

• It is hard to imagine the idea of a child being denied a lifesaving medication and support because adults will not take on the responsibility of helping them, yet it happens every day to children across the UK.

Taking Diabetes to School• The plight of children with Type 1 diabetes is being overlooked

due to the focus on the ever-increasing number of adults with Type 2 diabetes. 80 – 90% of children with diabetes have type 1 diabetes.

• Type 1 diabetes is not preventable and medical and scientific experts know of nothing a child, or their parents, could have done to prevent type 1 diabetes from developing.

• We believe that there should be clear legislation ensuring that children with chronic conditions, which include diabetes, are provided with proper care at school.

• In “Choosing health” the government stated “Children spend on average a quarter of their waking lives in school.The school environment, attitudes of staff and other pupils, as well as what children learn in the class room, have a major influence on the development of their knowledge and understanding of health.” (2004 p55)

•Approximately 1 in 550 school age children have type 1 diabetes

 •There is a steep rise in the number of under fives diagnosed with diabetes

•Type 1 Diabetes is a common condition effecting around 20,000 children in the UK under the age of 15.

"Managing Medicines in Schools“- failing to meet the needs of

children with type 1 diabetes

Common issues facing children with

diabetes at school Failure to have trained staff

to assist children with diabetes.

 Lack of understanding about diabetes and its management.

  Failure of LEAs to provide

schools with support and funding.

Refusal to help with blood glucose tests.

Refusal to help with administration of insulin.

Refusal to help with the administration of Glucagon.

Lack of coverage during school field trips and extracurricular activities.

Refusal to allow children to go on school trips.

Refusal to allow a student to attend school at all

“I forgot to make a back-up copy of my brain, so everything I learnt last

term has been lost”

• Some parents are unable to work outside the home in order to be able to go into school to help with the diabetes care and administer insulin.

• Some parents have lost their jobs due to taking time off from work to go into school

Mrs Julie Edwards, four year old Ellis and two year old Natalia

L needed to start having a lunchtime injection after other attempts to control the blood sugar with different insulin regimens didn’t work. Her parents were told that the teachers could not possibly inject “because of insurance” and that there was nobody else who could. We went to the Education Department; Social Services weren’t of any help. Mother

9-year-old Sam was left to wander the corridors in search of the school's first aider when he went low, as the staff felt that diabetes related issues were his responsibility.

After weeks of saying that they would be happy to check my child’s blood glucose they suddenly decided that they would not check him at all. Due to “health and safety reasons” This was two days before the end of the summer term before Oliver was due to start in September. There was no way that we could send him to this school and in our opinion he would not have been safe.

When I came to collect our child from pre-school the staff said that she was tired and was lying on a cushion in the "book corner" alone. She didn't normally fall asleep at school. When I tested her blood glucose level, it was 2.1 mmols. The staff's said that they hadn't tested her because she hadn't said that she felt low. Parent

A further meeting, with a large number of representatives from various agencies attending, had still failed to reach any decisions about suitable arrangements for a child to have his insulin injection. One suggestion was that the child be driven by car across town every lunchtime to go to his own GP to receive his injection….

HENRY MOORE PRIMARY SCHOOL

• The "Aims" stated on the school's web site .

• To provide a secure and caring environment in which the emotional, cultural, educational, physical, spiritual and social needs of each child can be met.

School Trips• Many children are

excluded from school trips because of staff anxieties about emergencies, routine diabetes management and injections.

• Some schools have rejected offers of parents support at these events.

 Currently there is no consistency with help available in schools

Excuses Excuses

A letter from the Essex County Council said

• “The LA’s Health and Safety team for schools does actively encourage schools to adopt this approach but as government has not compelled them to do so, neither can we as the local authority”.

• At the present time, 85% of children and young people with diabetes are failing to maintain adequate glycaemic control and are not achieving the recommended HbA1c target of under 7.5%. (The Healthcare Commission, 2006).

By the time some of the youngest children are 25 they will have

had type 1 diabetes for over 20 years.

What is a disability?

• When someone is disabled, people expect them to be in a wheelchair, or have a guide dog, or hearing aids. People just don't understand that a child can be “disabled” without looking disabled. Here lies part of the problem.

Hidden disabilities• Which of these girls

requires more support at school?

• Children and young people with type 1 diabetes are caught between not being fully accepted as having a disability and not being recognised as having a “real” disability

Children need more support with diabetes management now than in

the past

• Intensive insulin therapy

• Home blood glucose monitors

• Newer insulin preparations

• Insulin pumps

Obtaining funding for extra support

After carefully listening to Mrs Brown explaining why a 3 year old with an insulin pump would need support at school, the man from the local authority came up with the brilliant suggestion that little Tom could leave his pump at home during the day.

 

• These newer, flexible insulin regimens require more education and a higher level of carer/parent/patient involvement

• This often means that the children and teachers need more support in the classroom.

• Why are schools not getting funding for this?

Finding funding for support in school

A care package.A new version of pass the parcel

It goes like this…..• Schools say that they

do not have the funding.

• The LAs say medical needs should be dealt with by the PCT.

• PCT say that it’s not their problem.

Glucagon

• Glucagon was developed to be administered by people who are not health care professionals.

• Parents, siblings, babysitters, and other non-health care personnel.

Liability

• School staff get anxious about diabetes management.

• They worry about the possibility of coming into contact with blood, reading the blood glucose meter, giving or supervising injections and whether the correct insulin dose has been calculated.

 

Is diabetes management being dictated by schools?

 By the restricting the activity and carb intake, the controversial “Duct Tape” therapy proved an effective alternative to

traditional diabetes management.

Looking Ahead

Diabetes is one of the UK’s most prevalent, debilitating, deadly and costly diseases.

Complications cost the NHS a vast amount of money; anything done now to improve control will save money later

Discrimination and Goals

• We must find a way of ensuring that schools receive adequate training, support and funding from their LEAs in order for them to help children with diabetes. The government have a duty to ensure that the funding is available.

• Diabetes must be managed 24 hours a day seven days a week. We cannot ignore it during school hours just because it is

inconvient

Further sources of information/links and Acknowledgements

UK CWD Advocacy Group and mailing support list: Details here

http://www.childrenwithdiabetes.com/uk/

Report by UK CWD Advocacy Group into discrimination at school. Every Child Matters (or do they) http://www.childrenwithdiabetes.com/uk/Final6207EveryChildMattersCombined.pdf

Jackie Jacombs and Debbie Beskine

Report : Accessing Support in Schools for Children with Diabetes

http://www.childrenwithdiabetes.com/uk/AccessingSupportForChildrenWithDiabetesInSchool-UK.pdf Jackie Jacombs

INPUT http://www.input.me.uk/

Children with Diabetes website

http://www.childrenwithdiabetes.com/index_cwd.htm

Diabetes UK

http://www.diabetes.org.uk/

UK JDRF

http://www.jdrf.org.uk/

Apologies to R Gasbergen and Diabetes Humour

Many thanks to Barb Marche and Andre Picard for their support and ideas