The invisible battle of children with medical conditions and their families

On Wednesday 1 March, the All-Party Parliamentary Group for Diabetes and the All-Party Parliamentary Group for Epilepsy had a joint meeting to hear from parents, researchers, campaigners and healthcare professionals on the Safety and Inclusion of Children with Medical Conditions at School.

The meeting was co-chaired by Keith Vaz MP and Caroline Ansell MP, with the illustrious presence of Liz McInnes MP, George Howarth MP, Victoria Atkins MP, Andy Slaughter MP, Andrew Selous MP, Kevin Hollinrake MP and Baroness Bakewell of Hardington Mandeville.

Powerful testimonies were heard from the speakers and the audience on the challenges facing children with medical conditions at school. The Children and Families Act 2014 included a statutory duty requiring all schools in England to make the right arrangements to support children with medical conditions. However, as the evidence heard showed, the duty is not being implemented effectively, leaving over a million children with medical conditions at risk. The evidence collected will be part of a report.

Read the full minutes here: Minutes for the meeting on the Safety and Inclusion of Children with Medical Conditions at School

1.  Louise Taylor, parent

Louise, parent of a child with Type 1 diabetes, spoke of an unfortunate incident her daughter experienced. Her daughter suffered a dangerous hypoglycaemic attack during a cycling proficiency test. The school’s staff had not checked to make sure her daughter had her ‘hypo kit’ with her, and instead made her walk back to the school. When she finally arrived back to school, she was in a poor state and the school did not know how to help her.

“It is a parent’s worst nightmare to get a call from a school saying their child is seriously ill and they do not know how to help her”, shared Louise. Gladly, Louise was able to go to school to her daughter’s aid. It took a long time to get her daughter’s blood sugars back to a safe level. Not only it was an awful physical experience for her daughter, it was also embarrassing and traumatic. Her daughter is now scared of doing things she enjoys, like sports and extra-curricular activities.

The schools did not have a medical conditions policy in place, and did not know it needed one, by law. When the right procedures are in place, school staff can understand their responsibility in keeping children safe and how to do it. Situations like the one experienced by Louise’s daughter can then be avoided. Without it, children with medical conditions are put in unnecessary danger.

Louise also researched her local area to see how many schools had a medical conditions policy. She found that no school was even aware the duty existed. Because of it, Louise started a petition online to call on government to raise awareness and compliance to the law. She met her MP Andy Slaughter at the meeting and together they plan to raise awareness to the duty in their local area.

2.  Sue James, parent

Sue’ son suffers from chronic migraines, Postural Tachycardia Syndrome, Chronic Fatigue Syndrome and Vitamin D Deficiency. This makes her son’s autonomic nervous system malfunction, giving him dizziness, constant migraines and potentially fainting.

“Schools did not understand his conditions”, said Sue. Her son was not allowed to work in the school’s quiet room because he was told it was not suitable for him. When ill, her son is made to walk four blocks until the first aid room, which puts him at risk of accidents. Once, he was made to walk back home without her knowledge. When she asked for a wheelchair her son could use, the schools’ Headteacher advised her son not to use one, saying it “would not look cool”. When raising a complaint, the school deputy disregarded her son’s condition by stating that when she has a headache she takes over the counter medication and is fine the next day. Sue’s son has had a constant headache for 51 months.

Sue was told her son should only come to school when he is fit for work, and if he could not function in a normal classroom without support he could not attend school.

Despite being rated ‘good’ by OFSTED, the school did not have a medical conditions policy nor an individual healthcare plan in place, to the knowledge of the local authority. It was only implemented after Sue pushed for one. But still, the school refused to hear Sue and the healthcare professional’s suggestions for the plan. “There is a lack of understanding and communication”, said Sue.

Eventually, Sue had to take her son out from school per advisement of the Chronic Fatigue Syndrome team at hospital, as functioning without support in a mainstream school was too much for his health.

3.  Sara Milocco, parent

Sara’s daughter has coeliac disease and needs to follow a gluten free diet to avoid pain, vomiting, lethargy, emotional distress and, in the long term, cancer and osteoporosis. She had been trying to get the school to provide her daughter with gluten free food for years, but never received a response. When the duty came to force, she used it as a leverage to start a conversation, but still faced overwhelming resistance.

“The school still did not see coeliac disease as a medical condition and did not feel they had the obligation and responsibility to support my daughter at school”, said Sara. Even when she tried to compromise and offered to contribute with meals for her daughter, her help was denied as it would isolate the other students who might also want homed cooked meals. Sara’s concerns about the understanding of the catering staff and the risks of contamination were continuously dismissed.

In 2016, her daughter was given a full plate of pasta by the school and assured it was gluten free. It was not, and her daughter vomited it two hours later and had to be sent home in pain. Later, for simplicity, the school subjected her daughter to eat jacket potatoes and beans every day, which is far from a healthy balanced meal. As a result, her daughter’s well-being, concentration and growth was impacted. Sara was advised by her daughter’s doctor to withdraw her daughter from school meals, as her daughter had not grown in height or weight for six months.

“There is a lack of appropriate training, willingness to listen and care”, said Sara. She had to step up her complaints in order to be heard, but it still became her responsibility to raise awareness among school staff on gluten and the risks of contamination. It took Sara’s time, understanding and commitment to make any change happen. “What about parents who do not have the ability or time to bring a similar campaign forward?” she asks, wondering if their children do not deserve the same support. To this date, her daughter’s school still does not have a medical conditions policy in place, despite being rated as ‘outstanding’ by OFSTED.

After the parents spoke, Caroline Ansell MP stated there is a clear lack of compassion and understanding for the needs of children with medical conditions and thanked the parents for sharing their ongoing battles to get their children the support they need in school. She raised the issue of responsibility and asked if any of the parents had contacted their respective Governors. All parents had, none received a positive response. Caroline Ansell MP also empathized with the speakers and raised the issue of how parents can appear “too demanding” when all they want is their right.

George Howarth MP shared his concern about the psychological impact poor care and discrimination can have on children with medical conditions, saying there is a need to address the issue of bullying.

4.  Professor Helen Cross, Great Ormond Street Hospital

Helen started by explaining epilepsy is a condition which is characterised by recurrent seizures. Approximately two thirds of people with epilepsy have their seizures controlled by medication. She said in childhood, epilepsy is more common than diabetes, and there is still an element of stigma attached to epilepsy as many people are unaware of how the condition can affect young people.

“Parents may be aware of difficulties their children are experiencing at school, but many teachers are unaware what they are going through”, said Helen. As a solution, Helen said there is a need to raise awareness in schools and every school should have a medical conditions policy in place.

She explained how children with medical conditions may not want to be labelled at school, such as having photo charts on the wall or needing to go to a specific place if they have a seizure, so it is important to communicate with the parent and the child when building an Individual Healthcare Plan. Helen explained how this may not seem a priority if a young person’s seizures are under control, but Epilepsy may still be affecting their learning. “Every child needs an Individual Healthcare Plan”, said Helen.

Helen also spoke about the need for paediatric specialist nurses and their importance in providing a link for the young person by going into schools. She mentioned how the school nursing provision has unfortunately been reduced. She also called for the need for psychological support, as this is affects many young people with epilepsy, as well as other medical conditions.

Finally, Helen brought up the need to maintain support for children in secondary school. Many secondary schools find that issues affecting young people with medical conditions have not previously been recognised at primary school. She explained how this has a knock-on impact on young people, with some of them being recommended for fewer GCSEs or none. “Children with medical conditions need support at whatever time the condition is recognised”, she said.

5.  Simon Dyson, Professor of Applied Sociology at De Montfort University

Simon Dyson is part of a team of researchers at De Montfort University who report on the experiences of young people with sickle cell disorders (SCD) in the education system. SCD is a complex condition with major symptoms including strokes, silent strokes, chronic pain and acute painful crises. His team surveyed local authorities in England, pupils living with SCD and schools attended by young people with SCD.

He started by sharing some of the experiences he collected showing how children with SCD are not being cared for adequately at school. “In an academy school in England, a young girl with SCD was having a severe painful crisis and was rolling around on the floor in agony while other children film her on their mobile phones. The teacher did not intervene”, said Simon. A majority of children with SCD are prevented from going to the toilet when needed, about half reported not being permitted to drink water, and about a third are made to take unsuitable exercise. Simon explained all of these could trigger a severe sickle cell painful crisis, and all could have been avoided.

To make matters worse, a third of children said they have been called lazy when in fact they are tired from their anaemia. Moreover, parents are being threatened with fines for missed schooling when it is schools who are failing in their duty to include young children with medical conditions and help them catch up on missed work. “Lack of knowledge leads schools to misunderstand children’s accounts and make simple, but dangerous mistakes”, said Simon.

Simon explained how there is a need to raise awareness of the full implications of a condition, not just acknowledging its existence, as awareness without understanding allows children with SCD to became targets of bullying and discrimination. Even so, Simon shared there is evidence that raising teacher awareness is important, it was insufficient to make the difference in school experience. “Teachers are often overloaded and stressed and they need to be supported”, said Simon. It was only a background policy that was able change the social environment of the school and promote school inclusion, detailing procedures in a way that does not require teachers to be specialists of every condition.

However, results from Simon’s research has found that less than 10% of schools had such a policy in place. Furthermore, Simon shed light to the issue of accountability. In his research, only about 13% of local authorities contacted could state how many children under their jurisdiction had an individual healthcare plan or knew how many children with SCD they had in their schools. “At this level, SCD as a potential issue affecting pupils is relatively invisible in education policy terms”, said Simon. He declared OFSTED must be instructed to assess quality of inclusion of pupils with medical conditions as part of school inspections.

Liz McInnes MP agreed with speakers on the importance of supporting children with medical conditions at school, and raised the issue of school nurses. She questioned if this could be the solution to the problem. Simon Dyson responded that, at the moment, there is only about one school nurse for five schools. While it would be helpful to have more nurses, he said “a whole school change is needed”. Schools must change culture to fully include children with medical conditions, must change procedures to prevent them from becoming ill, and every staff should be prepared to help in case of an emergency.

6.  Thalie Martini, Diabetes UK Make the Grade Delivery Manager

Thalie is the chair of the Health Conditions in School Alliance, a group of over 30 organisations working together for the rights of children with medical conditions at school. She talked about how good care and inclusion in school ensures these children are safe and can achieve their academic potential. “Good care can be achieved when clear overarching procedures and policies are in place in schools”, said Thalie. She explained how the new duty in England has the potential to make a significant difference to the lives of over a million children with medical conditions. The problem is that the duty is not being implemented correctly.

She summarized the evidence from the meeting and how it resonates with the evidence collected by the Alliance. Parents from across health conditions are concerned for their child’s safety due to their necessary day to day management, fear their child will be excluded or put at a disadvantage because of their condition, and worry about school staff not being properly informed to know what to do to prevent their child becoming ill or excluded, or help in case of an emergency.

Thalie shared the results of two Freedom of Information (FOI) investigations conducted by the Alliance. In 2015 and in 2017 less than 12% of schools demonstrated statutory arrangements were in place to support children with medical conditions. As the causes for the poor implementation, the Alliance found that ‘lack of confidence’ and ‘fear of not knowing what to do’ were the main issues declared by schools. While most might be aware of the legislation, they do not understand it and know what is required of them. “There is limited support for schools”, said Thalie, “and it is unclear how the Department of Education is supporting them”. She shared how, through her experience with Diabetes UK Make the Grade Campaign, when schools have the tools to implement the duty correctly good care happens. “Schools need to be informed and supported to implement the duty”, said Thalie.

The issue of accountability was again brought up, with Thalie saying there is also a “limited monitoring of implementation”. Thalie shared the results surveys and investigations conducted by the Alliance, showing that less than 1% of Local Authorities check that schools have implemented the duty and only 27% of schools say OFSTED checked for their medical conditions policies in the last inspection. At this point, the struggles of children with medical conditions and their families remain invisible. “Implementation of the duty must be routinely monitored”, said Thalie. While the statutory guidance states that “inspectors must consider how well a school meets the needs of the full range of pupils, including those with medical conditions”, the OFSTED’s inspection handbook does not reference the statutory guidance.

As a solution, Thalie stated the Department of Education must take action to raise awareness of what is required in schools, and OFSTED must ensure inspectors are trained and equipped to routinely check schools’ medical conditions policies at inspections.

Caroline Ansell MP commented how it is positive to remember good care in school exists, and the importance of sharing good practice between schools. She said to be glad to hear there is a “blueprint” for solving the problems parents had shared. Kevin Hollinrake MP and Andrew Selous MP talked about the importance of raising awareness with schools of good practice and their statutory duty, suggesting a MP toolkit could be helpful to make sure that schools understand their obligations.

7.  Group Discussion

After each of the panel speakers spoke, Keith Vaz MP opened the floor for questions and many guests shared their personal experiences with the group.

One example was Emma Williams, parent of a child with both Type 1 diabetes and coeliac disease. She faced an uphill battle to convince her school the duty was statutory, but even after adopting it her school refuses to follow the agreed healthcare plan. As a result, the school failed to call an ambulance when her son suffered a dangerous hypoglycaemic attack. Moreover, her son is excluded from attending after school clubs and is continuously discriminated against. Her councillor arranged for someone from the Local Authority to go into school, but Emma could not input into the report or respond to the school’s allegations. The report goes as far as stating that drinking water can prevent a hypoglycaemic attack, when it cannot. The school’s governors’ suggested she moved her son to another school and claimed, in writing, his presence is “detrimental to all other 209 pupils”. Emma contacted the Department of Education, who advised the school was in the wrong, but said Emma would need to resolve the matter for herself with the school. She contacted Ofsted, who advised her they do not deal with individual child’s issues.

Emma’s despair in trying to guarantee her son’s safety and inclusion, something he is entitled to by right, is exemplar of why action must be taken to make sure the duty is adequately implemented in schools.

Next meeting

Keith Vaz MP thanked all speakers for their evidence. He reiterated the need to raise accountability and ensured both APPGs would continue to take this matter forward.

The next APPG for Diabetes meeting will take place on Wednesday, 19 April 2017 and will focus on the Improving Inpatient Care: Challenges and Best Practices. Please email if you would like to attend.



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