Every child has a right to education and every child has a right to medical care. Yet, Diabetes UK Northern Ireland have been made aware that some children and families across Northern Ireland can face great difficulties as they try to access a normal education and simultaneously manage their diabetes safely.
These difficulties include lunchtime insulin provision, discrimination in relation to school trips and extra curricular activities and a range of general care issues such as teachers being made aware, a private room being available, treatment during a hypo and children not being permitted to eat in class.
The 4Ts Campaign
Diabetes UK Northern Ireland is delighted to support the work of the Southern Trust as they used the 4Ts campaign to help raise awareness of Type 1 diabetes in the Trust area. We are looking forward to working with other Trusts in helping to promote 4Ts awareness. Here is the press release whic was featured in a number of the local papers covering the Southern Trust:
Integrated Care Partnerships (ICPs) in the Southern area are working in partnership with Diabetes UK and the Southern Education and Library Board (SELB) to highlight the symptoms of Type 1 diabetes.
Research by Diabetes UK has shown that up to nine out of 10 parents do not know the four main symptoms of Type 1 diabetes. To address this lack of awareness, the charity created a campaign to highlight the ‘4 Ts’ of Type 1 diabetes symptoms.
The 4 T’s stand for Toilet, Thirsty, Tired and Thinner:
- ToiletToilet - going to the loo a lot, bed wetting by a usually dry child or heavier nappies in babies;
- ThirstyThirsty - being really thirsty and not being able to quench the thirst;
- Tired Tired - feeling more tired than usual;
- ThinnerThinner - losing weight or looking thinner than normal.
Southern ICPs are raising awareness by distributing 4 Ts campaign posters and briefing materials to all primary schools throughout the SELB area. ICPs are networks of GPs, pharmacists, health and social care staff, voluntary and community groups and service users and carers, all of whom are working together to improve joined up and person centred care.
Michele Bekmez, Business Manager for ICPs in the Southern area said: “ICPs are now working in local areas to improve care for long term conditions such as Diabetes and promoting early diagnosis and early treatment is an important part of that work. We are supporting this important campaign to help ensure that parents, carers and those working with children know the symptoms and understand that a child urgently needs to visit a doctor and be tested for Type 1 diabetes if they have any of these symptoms. By simply remembering the 4 Ts could stop a child from getting dangerously ill.”
The campaign will also raise awareness among healthcare professionals. Posters and briefing materials will be distributed to Emergency Departments, pharmacies and GP practices across the Southern Local Commissioning Group (LCG) area in the coming weeks. This will be followed up with an education programme targeted at GPs, Practice Nurses and Pharmacists which will be delivered by the Southern ICPs in early Autumn.
Shakheera Ross, Media and Communications Officer at Diabetes UK NI said: "There are now 1,070 children and young people living with Type 1 diabetes in Northern Ireland. A lack of awareness is one of the reasons that a quarter of children with Type 1 diabetes are only diagnosed once they are already seriously ill with diabetic ketoacidosis (DKA), a life threatening condition which needs immediate specialist treatment in hospital. We believe that everyone who knows a child should be aware of the 4Ts of Type 1 diabetes, remember them and know what to do if they spot them. This is because onset can be so quick that a delay of a matter of hours can be the difference between being diagnosed early and being diagnosed too late.”
Policy in Northern Ireland
In 2008 the Department of Education and the Department of Health, Social Services and Public Safety published guidance entitled "Supporting Pupils with Medication Needs".
In the publication it is clearly stated "The administration of medication to children remains the responsibility of the parent or those with parental responsibility."
Following the publication the Department of Education also provided funding (248k) to the Education and Library Boards to provide training to all school principals on how to meet the needs of all pupils with medication needs, including those with diabetes.
Statement of Special Education Needs
Some children with disabilities can apply for a statement of special education needs. This details the special help that your child requires and it is provided by the Education and Library Board when it is decided that your childs needs cannot reasonably be provided within the resources normally available to the school. These resources include money, staff time and special equipment.
Obtaining a Statement of Special Education Needs can be a long process and it involves many partners.
The vast majority of children with diabetes do not require a statement and would not be successful if they applied for one. Children with diabetes only require a little more assistance and understanding and this should be covered by the Special Education Needs and Disability Order (SENDO).
Special Education Needs and Disability Order
The Special Education Needs and Disability (NI) Order 2005 (SENDO) brings all schools fully within the scope of the Disability Discrimination Act 1995. Schools now have a duty placed upon them to integrate children with disabilities, such as diabetes, within the life of the school and to make reasonable adjustments so that they are not at a substantial disadvantage compared to other non-disabled pupils in the provision of education and associated services.
The Equality Commission issued Guidance in 2006 on disability discrimination in schools which gives an example of reasonable steps that may be taken by a school for children with diabetes. These include: training all staff on diabetes awareness, providing a quiet room for the child to inject or where parents can adminster insulin and developing guidance for all staff on actions to be taken in an emergency situation.
Disputes and disagreements
If you are unhappy with the treatment of your child you should raise this in a calm manner with the school and, if that is unsuccessful, with the Special Education Department of your appropriate Education and Library Board.
If you still feel unhappy you can contact the Dispute Avoidance and Resolution Service (DARS). DARS was established in 2005 and aims;
- to resolve disagreements between Education and Library Boards or Boards of Governors of schools and parents about the way in which they carry out their responsibilities towards children with Special Education Needs (SEN)
- to resolve disagreements between parents and schools about the provision being made for children with Special Education Needs.
The DARS is an independent, confidential, voluntary and informal service designed to provide an opportunity for identifying points of disagreement and finding ways forward that all parties are willing to accept.
There is a DARS contact in each Education and Library Board area, who is independent of its Special Education section.
If this is still unsuccessful you can still take your case to a Disability Discrimination Tribunal or, if your child has a Statement of Special Education Needs, you can appeal to the Special Education Needs Tribunal. Organisations such as the Children's Law Centre and NICCY will be able to provide you with detailed information as to how this process works and provide any support should you need it. It is worth noting that as the case would involve a child legal aid would be available.
Activity taken so far
Diabetes UK Northern Ireland fully accepts that teachers have a voluntary role in administering medication. However, there is an onus on schools to fully appreciate the duty of care they have in relation to a child and their access to education and to endeavour to find a solution.
A child whose diabetes is not effectively managed is at a disadvantage as their cognitive ability is adversely affected by too high or too low blood glucose levels.
To start Diabetes Week a launch event was held at Stormont to communicate the difficulties to education officials, health officials and MLAs. Moving forward, Diabetes UK Northern Ireland will be working with those affected to put the issues in front of MLAs and the Department of Education and to encourage everyone involved to find a solution.
Officials from the Department of Education have already raised the administration of insulin and out of school activities with the Education and Library Boards and have offered to work with all stakeholders in resolving these issues. Diabetes UK Northern Ireland continues to communicate with the relevant partners to seek a solution.
If you have been affected and would like to get involved or you would like to be kept up to date with developments please email to join the Children's Campaign Group which is then emailed updates, information and requests as appropriate.