Diabetes (Care in Schools)

Tuesday 11th September 2012 Westminster Hall

12:59

[Pauline Latham (Mid Derbyshire) (Con)]

It is a pleasure to serve under your chairmanship, Mr Leigh. I thank Mr Speaker for selecting this important debate on type 1 diabetes in schools. I congratulate the Minister on his promotion in the reshuffle.

I was inspired to request this debate after being contacted by a family with two boys who both suffer from type 1 diabetes and require multiple finger-prick blood tests and insulin injections daily, just as Rufus the bear, who also has type 1 diabetes, needs help. They have experienced many problems in organising the management of their children’s care in school, particularly for the youngest who is still in primary school, a cheerful child who was diagnosed early at the age of two, but is not yet completely stable, even though he is now 10. He loves sports and wants, as anybody would, to be treated just the same as any other child of the same age. Type 1 is not his lifestyle choice; it is a problem with his immune system, causing it to turn on itself and destroy the cells in his pancreas that produce the insulin that we all need to live. If his blood sugar is not kept at a stable level, this increases the risk of long-term complications, such as kidney disease, blindness, stroke and nerve damage.

There are an estimated 29,000 children with type 1 diabetes, who are usually diagnosed between 10 and 14, but the incidence of type 1 in children under five is increasing by 5% year on year. The UK has the highest number of children with diagnosed diabetes in Europe, but the lowest number of children attaining good diabetes control.

Living with type 1 diabetes has a profound impact on children and their families: there are no days off and even a few hours of trying to forget can be dangerous. Living with this complex, chronic condition is at times unbearable for many parents. Many children with type 1 diabetes will struggle to keep their condition under control. It is important to manage food, insulin and the amount of physical activity that a child does. We encourage children to do at least 60 minutes’ physical activity a day, but this can cause complications in children with type 1 diabetes. The way that these factors are managed directly affects a child’s attendance and performance at school.

A survey by Diabetes UK showed that three in five schools do not have a policy on advising staff how to give medication.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Lady on securing the debate.

This week in Northern Ireland, a group of parents felt unable to send their type 1 diabetic children to school, as they were not convinced that staff were fully trained in how to deal with a crisis. Does the hon. Lady feel that better co-ordination is needed between schools, those dealing with health and parents, so that everyone understands what is needed at school?

[Pauline Latham]

The hon. Gentleman raises an important point that I intend to deal with later.

I should like to raise a number of concerns relating to one young boy that also relate to the thousands of families in the UK who have children with type 1 diabetes and are struggling with inconsistent care provided at schools. Every parent of a child with diabetes has the right to know when leaving children at school that the appropriate care systems will be in place to allow that child to have the same access as others to high-quality education, care and support, without exclusion from activities.

[Caroline Nokes (Romsey and Southampton North) (Con)]

I congratulate my hon. Friend on securing this important debate. I am glad that she has moved on to the support of young people suffering from diabetes, because it is not just about the practical elements of care and management of the condition. Too many young people feel a stigma attached to their suffering from a condition that they have no say over and cannot control. Does she agree that emotional support is almost as critical as the practical and physical medical support?

[Pauline Latham]

Yes. I thank my hon. Friend for her intervention. Young children and those in their teens hate to be different and need such support to ensure that they do not feel that they are different. Parents also need support, because it is difficult if they are not completely confident, when leaving a vulnerable child at school, that the school is in full control of care and what is going on with the child.

It is important that all school staff have a good awareness of type 1 diabetes and know what to do in an emergency, for example, a hypoglycaemic episode. Sadly, this is not so and there are huge discrepancies across England in the quality of care provided to children at school. It is a postcode lottery.

While working alongside my constituent to ensure that the required care is put in place for the boy in question, the Essex protocol was brought to my attention. The Essex protocol is a set of guidelines produced with parents and partners by Essex county council to ensure that school staff are supported and given the right equipment to support pupils with diabetes. These guidelines are invaluable when it comes to protecting the safety of a child and, of course, parents’ peace of mind.

If a school in Essex is insured through the council and has followed the protocol guidelines, they are fully covered by the school’s insurers. Leeds, Birmingham and Exeter also have appropriate guidelines. The guidelines should be of the same standard and applied throughout the UK, because at the moment there is huge variation in the quality of care that a child receives in their school. The very existence of this variation raises serious questions about the confidence that can be placed in those who have the duty of care for the child throughout the school day.

[Jeremy Lefroy (Stafford) (Con)]

I congratulate my hon. Friend on securing the debate. My constituent, Darcy Evans, who suffers from type 1 diabetes is fortunate to have an excellent school nurse in her school, but is concerned that other children should have the same access. What does my hon. Friend think could be done to even out, to a higher standard, the quality of care across schools and to ensure that it is not only teachers who are informed, but even pupils, because the reaction of fellow pupils is also important?

[Pauline Latham]

I will mention care that can help children, and creating a level playing field throughout the country, because it is important that all children are treated equally.

The parent of a child in Derby is concerned that he is not being taken seriously by the head teacher of the school. That is inexcusable. Three parties must each take responsibility of the care of a child with diabetes: the parents, the school and the medical specialists at the hospital. It is also clear that the needs of each child will vary, and therefore their care must be viewed individually for it to be planned effectively. With this in mind, the individual health care plans suggested by the Essex protocol are a proactive and sensible method of ensuring that the care of a child is taken into account when they are at home and at school.

Sensible planning will save lives. Such planning will give the parent the opportunity to say, for example, that under no circumstances should their child be allowed to walk alone when feeling unwell or to go up and down stairs, because if a hypoglycaemic attack occurs and a child becomes unconscious, falling down stone steps in some older schools can be a matter of life or death.

I would like all pupils with type 1 diabetes to have individual health care plans. It is important for all parties involved with care of a child to keep a copy of the plan and understand what it means. No policy like this should simply be read once, then put on a shelf and ignored. The Essex protocol suggests that the head teacher nominate at least two members of staff who are willing and able to undertake further training to enable the school to meet the health care needs of a child. I agree with that, but would like to go further.

Even if members of staff at a school are nominated and given full training, it is unlikely that either of these members of staff will be with the child at all times, which means that, should a child become unwell, another child may need to leave the classroom to fetch the specially trained staff member, using up valuable minutes. Should one of the trained members of staff be on annual leave and the other absent due to sickness, once again, the pupil could be left in a vulnerable position. Therefore, in addition to the two staff being trained, as suggested by the Essex protocol, I want them to come back and train all the other members of staff in each primary school, whether teachers, teaching assistants or admin staff. Pupils, too, should be educated about what diabetes can mean and that it is not something that the children have chosen to do if they go hypo from time to time. In a secondary school, each department should have one trained member of staff. A nurse in every school would be ideal, but I recognise that that has a huge cost implication. It would be useful, however, if nurses could come in and retrain the staff periodically, so that they are always up to date.

In all schools it is important that all teachers, including temporary and supply teachers, understand the basic needs of children with diabetes, so that there is no chance of children being denied access to a snack or medication. That does happen, when they might be told, “No, you can’t eat, because you’re not allowed to eat in the classroom.” The Essex protocol recommends that for a diabetic emergency all school staff should have an awareness of diabetes and be able to offer practical assistance to the child during such an emergency. I completely agree with that idea, and parents up and down the country do, too. I ask the Minister to look into enforcing the requirement in schools all over the country, possibly using the skills of charities such as JDRF which provides free education packs for all schools to support pupils, parents and staff throughout the UK, and into providing bears, so that the young children are not frightened of testing because the bear has to do it as well. It is important for the Government to set out the exact responsibility for the provision and funding for such training, so that all schools know exactly where they are.

I have become concerned because the parents in the case to which I referred have had to go to great lengths to argue for trained adult support for their child in school. That is simply not right. Sadly, my research into the topic has revealed that, while the Government recommend that schools and their employees should have policies in place for the management of pupils’ medicines and their medical needs, the school staff have no actual legal duty to provide medical support, administer medication or supervise a pupil taking it. As far as I can see, that means ultimately that schools do not have to take responsibility for children with diabetes, in spite of having such children in their care each and every day.

Naturally, if a school is not receptive to the needs of the child, as in the case I referred to, parents will be worried continuously when sending their children to school. With that in mind, I refer to the Equality Act 2010, which places a duty on schools to make reasonable adjustments. Unfortunately, it is all too common that children who suffer from diabetes and other health conditions are excluded from school trips, physical education lessons and social events because of care concerns. They must be given equal access to the enrichment programmes that schools can provide, and those children should be able to enjoy school life to the full, with the necessary support provided, in particular because we do not want to stigmatise children with type 1 or type 2 diabetes.

Parents must of course take responsibility for their children, and review and update their individual health care plan as appropriate, but it is equally important that schools also take responsibility when they have children with health conditions such as type 1 diabetes in their care. I want the Government to be absolutely clear when it comes to clarity of responsibility, and to set out the duties of schools and of local authorities so that we can ensure a continuous quality of care for all children with diabetes and stamp out the current postcode lottery. The Government need to address an issue that applies to thousands and thousands of families with young children throughout the UK. I urge the new Minister to take that on board and to talk with his counterparts in government to ensure that we have a coherent policy for all children with type 1 diabetes or any other chronic illness.

13:14

[The Parliamentary Under-Secretary of State for Education (Mr Edward Timpson)]

It is a pleasure to serve under your chairmanship, Mr Leigh. I congratulate my hon. Friend the Member for Mid Derbyshire (Pauline Latham) on securing this extremely important debate. I welcome her constructive and well informed speech, as well as the not insignificant contribution of Rufus the bear, which unfortunately might not otherwise have gone down in the Hansard history.

I, too, have spoken in the past on children’s health conditions, and I understand and am very much aware of the challenges that affected children might have to face in school and outside it if they have a chronic condition such as diabetes, which affects one in 550 school-age children. We are not talking about an insignificant number of children. My hon. Friend also alluded to my being reasonably new to the great machinations of the Department for Education, but I shall endeavour to do my best to address all the points that she made. On anything I am not able to address today, I shall make every effort to fulfil my duty by engaging in correspondence with her, to ensure that she has all the answers for which she has posed questions.

I am acutely aware and conscious of the often draining impact on parents of a child with type 1 or type 2 diabetes. Day to day, they have to manage the condition, which is lifelong. It is important to recognise the huge contribution of parents to ensuring that their children have as happy and as normal a childhood as possible.

Without doubt, it is vital that children with diabetes are able lead the same full and active life as children without diabetes—there should be no discrimination, and the Equality Act 2010 makes it absolutely clear that that applies within schools. With proper support, children with diabetes should be able to participate fully in school life and to enjoy their time there along with their friends, not feeling left out in the way that my hon. Friend has described in some cases. For that reason, it is right to encourage schools to do all that they can to support pupils with medical needs, including diabetes.

Teachers have to consider many conditions when looking at the provision and support for children in school. Fortunately, there are many examples of schools excelling in doing precisely that. We expect schools, employers, staff, parents and local health services to work together in the interests of such children—very much as hon. Members have been encouraging them to do in today’s debate—to ensure that they are not disadvantaged at school. The 26,500 children affected by type 1 diabetes in the UK is a significant number, so the issue is of real importance to the families and teachers directly involved with those children’s lives.

As my hon. Friend pointed out, by necessity children diagnosed with type 1 diabetes must learn quickly how to manage their condition themselves: how to monitor their blood sugar; how to choose meals in the school dining room with an appropriate carbohydrate content; what precautions to take when they exercise and play sports; and how to manage their insulin infusions or to do their own injections, which they might have to do as many as four times a day. I have certainly seen that in my constituency, when visiting schools and learning about some of the conditions that children have to live with day to day and how responsibly many children are in facing up to the challenge.

Such a task is challenging for children or young people, and we cannot expect them to do it on their own, without the proper support. They need that support, and without it in place, it is all too easy for the children to be distracted from their learning and from feeling safe and happy at school—quite apart from the stigma that can be associated with the condition, as mentioned by hon. Members. It is also important that children with diabetes are not excluded from school trips or PE lessons due to a lack of understanding of the condition by their school. If that happens, the word must go out that that is not only unacceptable but ultimately discriminatory.

The first priority for any family with a diabetic child is to ensure that school staff and fellow pupils understand the condition and, in particular, what to look for should the child suffer low blood sugar or even a hypo. Safety must be the No. 1 priority. That is particularly important for the newly diagnosed and for very young children, who may find it more difficult to help themselves. The key to success is common sense.

Parents, staff and health professionals should work together, sharing information and agreeing responsibilities that reflect the personal requirements of the individual child. It is important that staff work together to ensure that, in every situation and at all times, someone at the school has the training and understanding of what is required if an episode occurs or an injection is required. They should ensure that protocols are agreed and followed and that the specific needs of individual pupils are fully addressed and accommodated. Access to medicine and appropriate snacks should always be allowed.

It is crucial for children with diabetes to control their condition well, because the long-term complications may be life-threatening, as my hon. Friend said—not to mention the massive cost to the health service of complications. Adequate support at school can affect a young person’s confidence in taking control of their condition at that vital early stage. It is also important that teachers are sensitive to the bullying that may result when a child lacks confidence or feels different because of their condition. I have come across that in my constituency.

Long-term medical conditions can impact negatively on academic attainment and pupils’ psychological well-being. That should provide a strong incentive for teachers when considering how to support pupils with diabetes. If they want to do what they are there to do—to get pupils to learn and to fulfil their academic potential—supporting them and helping them to control their diabetes is an important step in achieving that.

The good news is that there are many examples of effective practice throughout the education system. The vast majority of schools adequately manage pupils’ medical needs, and it is right that we trust them to do that and to make relationships work at local level. However, I am aware—this has been articulated further today—that some parents believe that schools do not do enough to help them and their children. Some employers—schools and local authorities—feel that they bear a significant risk if something goes wrong. Some staff, particularly support staff, feel that they are left to deal with children with inadequate or insufficient training, or are asked to carry out procedures they are not comfortable with. That remains a problem even today, but such feelings should be unnecessary and may lead to distress for the child concerned, their family and the school.

We want relevant school staff to be competent in managing pupils’ health needs and to feel confident in doing so. Schools should ensure that staff understand the school’s responsibilities, have appropriate training and can access continuing support, which includes receiving advice from juvenile diabetes specialist nurses in local health services when they are present.

It is clear that the effective management of long-term conditions helps children to improve their academic attainment and enables children with additional health needs to be included in the wider life of the school. That is extremely important. Teachers have a responsibility to ensure that pupils with diabetes can fulfil their educational potential, and it is in everyone’s interest to learn about diabetes, how to manage emergencies and how to support pupils with diabetes. In many ways, that goes beyond the education system, and there is a much wider debate to be had about pupils’ understanding of what diabetes is and how it manifests itself not just in adults, but in children. If people are more aware of that, there may be greater potential for local collaboration to be more effective.

The Government have made it clear that they want to give schools maximum freedom to use their own professional judgment and to decide their own priorities. As my hon. Friend said, there is no legal duty on teaching staff to provide medical support, to administer medication or to supervise a pupil taking medication. There are no plans at this stage to change that. It is for individual schools to make decisions about the managing medicine policies and protocols, but they are funded to provide continuing professional development and training for staff, and it is their responsibility to ensure that such needs are met for children with diabetes.

It is right that schools should take responsibility for managing their own approach to medicines, and guidance is available to support them. We encourage local authorities and schools to adopt the guidance in the booklet, “Managing Medicines in Schools and Early Years Settings”, which was produced in 2005. Appropriately, it provides joint guidance from the Department for Education and Department of Health, and it explains the roles and responsibilities for administering medicines on school premises. The guidance aims to ensure that children with medical needs are effectively supported, and work is ongoing as we speak to review and update the guidance to make it fit and proper for the future. It also contains a template for a health care plan, which my hon. Friend discussed. There is no excuse for schools not putting such plans in place.

Schools can also make use of the excellent resources created by the Medical Conditions at School Partnership, of which Diabetes UK is an active and important member. I am sure that my hon. Friend is aware that its website holds specialist advice about pupils with type 1 diabetes to help schools and school health care professionals to support such pupils. There are also resources for holding diabetes awareness sessions that can be used by schools to inform and train staff in a format that is accurate, reliable, easy to use and well presented. Similarly, it is right to say that Diabetes UK has excellent online resources for schools to use.

My hon. Friend alluded to the Juvenile Diabetes Research Foundation, which launched a resource pack in September 2008. During the last school year, 2011-12, it sent packs to more than 2,000 primary schools. I believe that it is in the process this month of sending out similar packs to secondary schools. There is plenty of information, advice and guidance out there for schools to take on board.

[Pauline Latham]

On that specific point, I have spoken to JDRF and I intend to send packs to every primary and secondary school in my constituency, so that they will have no excuse for not knowing about the situation.

[Mr Timpson]

I suspect that that is music to the ears, and I commend my hon. Friend for taking that course of action. Perhaps other hon. Members should consider following suit, because there is clearly not only a need, but an appetite for that to be followed through across the education sector. I commend my hon. Friend for leading by example.

I do not believe that it is the task of central Government to provide specialist medical advice for schools. It is for the excellent third sector organisations, such as Diabetes UK and JDRF, which employ highly skilled medical practitioners and work closely with their members, to support and advise them on specific issues.

My hon. Friend mentioned the Essex protocol, which provides an excellent template for all local authorities and schools to use, or to adapt, to meet local circumstances. She cited inconsistent services and a postcode lottery of care in schools, and it goes without saying that that is totally unacceptable. I highly commend the protocol to those schools and local authorities that may be reviewing their own practices and are seeking a tried and tested model as a basis for improving their care of pupils with type 1 diabetes. I trust that many more schools will take it on.

I am pleased to report that from April 2012 paediatric diabetes services will attract a best-practice tariff payment of £3,189 per patient per year for every child or young person under 19 who attends a paediatric diabetes clinic, provided certain strict criteria are met. The best-practice tariff includes a requirement for 24-hour support and advice to be available to patients and their families. To ensure that the child receives the best care that they can offer, that will include additional contacts by the diabetes specialist team for check-ups, telephone contacts, school visits, e-mails, troubleshooting, advice, support and so on. Eight contacts per year are recommended as a minimum. I hope that my hon. Friend agrees that that is a new and significant incentive for local health services to provide additional support for young diabetic children.

The coalition Government place a sharp focus on robust standards across the education system and the highest quality of teaching, and rightly so. But if children are to enjoy and progress at school, it is vital that schools provide a secure and happy environment where they can focus on learning, and for children with diabetes that includes oversight of their well-being and safety. Parents also need, and should always have, the assurance that their child’s school provides a secure environment.

We all agree that we need to help pupils with diabetes to grow in confidence, independence and well-being. I do not support further Government intervention or legislation, which would be heavy-handed and unnecessary, but I believe that every child or young person with diabetes should have an individualised, evidence-based care plan with agreed review dates. All schools should aim to have those in place, and the Essex protocol is a good starting point.

I am grateful to my hon. Friend for raising this important issue. If I have not covered any matters in this short debate, I will endeavour to write to her, so that she has answers to all her questions.