Education: Children with Diabetes
(13 years, 10 months ago)
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Lord Kennedy of Southwark
First, I declare that I have type 2 diabetes, having been diagnosed with the condition nearly two years ago. I am a member of the charity Diabetes UK and actively support its work.
I thank the Minister, the noble Lord, Lord Hill, for being here to respond to this debate. I am sure he has a busy diary and his attendance is very much appreciated. I am delighted that my noble friend Lady Young of Old Scone is also taking part. She is the chief executive of Diabetes UK, and I think it is fair to say that we are all looking forward to her informed contribution to this debate. I also look forward to the maiden speech of the noble Lord, Lord Lexden.
Too many children with type 1 diabetes get a raw deal at school. Many of our children are excluded from school trips or social events; they are excluded from PE lessons; they are prevented from eating the snacks they need when they need them; they are denied access to their medicines when they need them because they are “safely locked away”; and they experience bullying. Many young children are also left to inject insulin themselves, leading to increased fear and anxiety for their parents. It is therefore not just the children with diabetes who get a raw deal; their parents do too.
As well as the worry that parents feel for their children, many are forced to give up work because schools refuse support if a child is unaccompanied by a parent. Diabetes UK continually hears from parents who are unable to work because they have to go into school to administer medicine. Diabetes UK also continually hears from parents who have to fight for basic support from a school and they do not always get it. Some children have even been forced to move schools. They have heart-breaking stories, and there is an emotional and financial strain on families.
At this point, I congratulate Diabetes UK, which has established an advocacy service offering vital help for families struggling with these issues. Diabetes UK deals with around 100 enquiries a month. I also commend the charity for its long-running efforts to improve the lives of all children with diabetes at school.
Noble Lords may ask: why does this issue matter when only a small number of children live with type l diabetes? However, it is not a small number. More than half of our schools have children with diabetes. In recent times, childhood obesity and poor food choices leading to type 2 diabetes have been the focus of attention. While these issues should not be ignored, only 1,400 children in the UK have that form of diabetes. However, 20,000 children under the age of 15 have type 1 diabetes. Its incidence is increasing, particularly in the under-fives, where the number affected has increased fivefold over the past two decades. Two thousand children are diagnosed with type 1 diabetes every year.
Children with diabetes have as much right as any other children to a decent quality of education and school experience, yet their school experience varies greatly from no school support and very patchy support to good, child-centred provision. Many of our schools are failing to help children with diabetes to participate fully in learning and school life. Worse still, a lack of education among pupils, parents and teachers leads to bullying and children struggling to fit in. That increases their anxiety about being “different”—a feeling which could affect their confidence level in school and throughout life.
David, a boy from a school in Northamptonshire who was diagnosed with type 1 diabetes when he was three, got upset when a girl told him that she was not allowed to play with him in case she caught his diabetes. Another boy used to call him “Diabetes Boy”. He remembers how he was not invited to play at his friends' houses, as their parents were scared that they could not deal properly with his diabetes if they needed to.
Children with type 1 diabetes are at risk of heart disease, blindness, amputations and kidney failure, so proper control of their condition is imperative. It is vital to keep their blood sugar regulated, avoiding fluctuations. Regular blood-sugar tests and injections, sometimes up to four or five times a day, are necessary to avoid life-threatening complications. These tests and injections have to take place during school. It is not a choice; it is a necessity. Insulin, via injection or pump, sometimes several times a day, is vital for life. At a school in Warwickshire, Jane, a young girl, was diagnosed with type 1 diabetes at the age of 11. She was told not to inject herself in public as it was “disgusting”, but these injections have to take place during the school day.
Too many schools are uncomfortable about dealing with children with diabetes. Another school was not treating a six year-old’s “hypos” when they occurred, nor telling the child’s parents. It also refused to do the blood glucose monitoring test because staff felt too squeamish.
Many schools lack knowledge and have a fear of liability. In one school, although it had a nurse to assist children with diabetes, children were excluded when the nurse was on leave or absent, and pupils were made to wait outside the school gates until the nurse arrived each morning. There are some reports of schools expecting parents to ignore clinical advice and change a child’s testing and injection regime to suit the schools’ scheduling. Surely this should be the other way round.
Five year-olds banned from school sports days; schools refusing to hold supplies of insulin or blood-testing kits; worse still, schools refusing to have children with diabetes in their classes; a nurse refusing treatment to a toddler—the list of shocking accounts goes on. Some schools believe that administering medicine is not their responsibility. A Diabetes UK survey showed that, although more than half of schools were aware that they had pupils with diabetes, 70 per cent required either that such children injected themselves or that their parents came in to do it. Only 16 per cent allowed staff to test and give medicines to pupils.
That is why more than 80 per cent of five to 11 year-old children with diabetes are failing to achieve good control of their condition. This is the worst level in Europe. It means increased health problems for our children and worsening health as they enter adulthood. It is a preventable strain on the resources of the NHS and a preventable level of suffering.
We should have policies and procedures that protect our children, not put their health at risk. Too many children struggle to keep their diabetes under control. Schools need to be part of the solution, not the cause of the problem. They have a vital part to play in supporting the daily management of diabetes in children.
There are some great schools which support children with diabetes very well. The right attitude and leadership at a school can make a huge difference. Their good practice needs to become standard practice in all schools. All children with diabetes should be known to the school, with individual care plans prepared with the child, parent, doctor and teacher. Good practice involves a positive school attitude, a child-centred approach and a high level of training for the staff. The aim in every school, or at least every school with a child with diabetes, should be to train all teachers and support staff. Government need to be proactive and strengthen existing legislation so that children with diabetes or any health condition are recognised as a vulnerable group and their well-being is properly supported.
The plight faced by children with diabetes at school exemplifies fundamental failings in public policy, bringing health and education together at a national and local level. Effective partnerships need to be built, and schools need to be required to provide staff training so that teachers have the confidence to support children with diabetes properly and ensure that the guidance is followed. Inspection is the key to ensuring the proper implementation of policies and procedures. We need to establish standards in schools for the support of children with specific health conditions and place a duty on Ofsted to monitor whether that is provided.
Do the Government know the number of children in our schools with long-term conditions and the numbers for each condition? It is only with accurate information that the Government can know the amount and type of support needed to plan accordingly. As Ed Balls, Labour’s former Secretary of State for Children, Schools and Families, said, we want this to be the best place for children to grow up. That is why Every Child Matters. Every child needs the chance to fulfil their full potential.
In conclusion, I ask the Minister to agree to meet the delegation from Diabetes UK and myself to explore what can be done to improve the situation. I do not believe that this involves huge costs; rather, it involves a willingness and a desire to see the situation improved. As Daniel at age five said: “I like school, but school doesn’t like me”.
Baroness Walmsley
My Lords, the recent report from Diabetes UK published last November claims that inequalities in support for children with diabetes in England's primary schools could be putting the health of up to 84 per cent of five to 11 year-olds with the condition at risk. It found that only 16 per cent of schools that have such children on the roll have a medication policy and administer vital insulin. This issue is not confined to diabetes; it is broader than that. There are other serious but manageable conditions which children have for which this is an issue.
I was surprised to read that this is not really a minority issue, since 52 per cent of primary schools have at least one child with this condition and, of course, other schools have epileptic children and those with serious nut allergies and so on. All require special attention to the needs of the child. I was horrified to read in the report that, when the school cannot administer insulin during school hours, often the parents have to come in to do so, jeopardising their opportunities to hold down a paid job.
When considering matters such as this I always turn to my bible, the UN Convention on the Rights of the Child, to which this country has been a signatory for 20 years. There are five articles in the convention which are relevant to this issue and, taken together, enshrine the rights of diabetic children as well as all others. Article 4 on the protection of rights says:
“Governments have a responsibility to take all available measures to make sure children’s rights are respected, protected and fulfilled”.
Article 6 on survival and development says:
“Children have the right to live. Governments should ensure that children survive and develop healthily”.
Article 23, on children with disabilities, says:
“Children who have any kind of disability have the right to special care and support, as well as all the rights in the Convention, so that they can live full and independent lives”.
We do not normally consider diabetes as a disability but, for these purposes, these rights are relevant. Then there is Article 24 on health and health services, which says:
“Children have the right to good quality health care”,
the best possible in that country. Finally, Article 28, on the right to education, says:
“All children have the right to a primary education, which should be free”.
It also says that any form of school discipline should take into account the child’s human dignity. Excluding the child from school just because a nurse is not on the premises flouts their rate to an education. Certainly asking a child to inject their insulin in the school toilets flouts their right to dignity.
In this country, as with all other state signatories, every child has the same rights as every other. I therefore support Diabetes UK in some of its demands on the Government. It wants diabetic children to be viewed as vulnerable children. It wants the forthcoming child health strategy to spell out how the Government will ensure implementation of relevant policy in schools. This becomes particularly difficult when we have so many state-maintained independent academies, some of which will be primary schools. Being autonomous makes them a little more difficult for the state to control. That is the whole point of academies; they are not controlled by the state. How will we ensure that they take adequate care of these vulnerable children? Perhaps the Minister will tell us.
Diabetes UK is calling for Ofsted to routinely inspect whether schools have clear medication policies, but how can they do that when their remit is to be slimmed down to four planks? Which part of the Ofsted inspection will cover the health of children with long-term life-threatening diseases? The charity also asks for partnership working between schools, local authorities and PCTs. However, PCTs are being abolished, and academies will not have such close relationships with local authorities as those of community schools. How will diabetic children fare under these new regimes? I will be interested in hearing from the Minister on this.
It is a national disgrace that we have the highest number of children with diabetes in Europe and the lowest number attaining good control of blood sugar. As we have heard, only some 20 per cent do. Questions have to be asked about why we have such a large number of children with diabetes, and I assume that for some of those children the answer lies in obesity and lack of exercise. What are the Government doing to address childhood obesity and ensure that all children have the opportunity for enjoyable sport and other forms of exercise, such as dance and cheerleading, which do not always have a competitive element? If we do not address these issues, we will store up health problems and cost for the future, as the noble Lord, Lord Kennedy of Southwark, said in his excellent opening speech. Children with diabetes should not be excluded from lessons such as PE—they actually need exercise to help them to control their blood sugar—to extracurricular activities and school trips. Their human dignity requires that they have proper opportunities for injecting insulin, where necessary, in hygienic conditions.
I am pleased that the Education Bill published last week retains the duty on schools to promote the well-being of their pupils. In some cases, such as those of children with disabilities and conditions such as diabetes, that requires special measures because these are special children. Is that duty enough, or does the Minister think that other measures are required to ensure that schools take that duty seriously?
Lord Lexden
My Lords, Tories above all love traditions. A new Member of this House, deeply conscious of the privilege of entering it, immediately encounters one of its most agreeable traditions. I refer of course to the immense warmth of the welcome given to the new arrival by noble Lords on all sides and by the ever-helpful officials who provide a kindly answer to every question. I am deeply grateful.
Sir Lewis Namier, the great historian of the pre-1832 unreformed Parliament, once declared with playful and light-hearted exaggeration that,
“In the eighteenth century peers made their tutors under-secretaries; in the twentieth under-secretaries make their tutors peers”.
I wish that Namier was still around to make a merry quip about the fact that in the 21st century a Prime Minister has elevated someone who acted as his political tutor, if only in a minor respect. I stress the word “minor” because my right honourable friend the Prime Minister, with his instinctive grasp of politics, needed little guidance as he passed through the Conservative Research Department, which I helped to run in the 1980s and 1990s.
The Conservative Research Department, now as then, is refreshingly free from ideological fervour, as every true Tory institution should be. That has enabled it to supply recruits for the Labour, as well as the Tory, Benches in this House. It nurtured the late Lord Longford, and 30 years ago the Conservative Research Department was adorned by the noble Lord, Lord Howarth of Newport. Two former members who did not defect, my kind and noble friends Lord Cope of Berkeley and Lord Black of Brentwood, have guided my prentice steps in this House as my sponsors.
I have lived my life thus far as Alistair Cooke. Long shadows have fallen on me, cast first by the world-famous writer and broadcaster and now by a fine England batsman. Re-emerging as Lord Lexden, I am liberated from what could have been a lifetime's sense of inferiority.
Lexden, on the outskirts of Colchester in Essex, was where I was born and brought up. My father, a much loved GP for some 40 years, took a deep interest in the welfare of all children, but particularly of those with diabetes.
Lexden was the scene of a notable engagement between the Roman invaders and the ancient Britons. Every day on my way to school, I passed the earthen defences that the Romans had overwhelmed before making Colchester one of the principal centres of their power. This was the genesis of the historical interests that have always mattered to me more than anything else.
One other place is never far from my thoughts: Northern Ireland. I taught for some years at Queen’s University in Belfast before becoming political adviser to Airey Neave in 1977. At that time, Britain often gave the impression of wanting to wash its hands of Ulster altogether. Today there is a lesser, but still grave, danger: indifference. The Province has a devolved Government. Why not leave it entirely to its own devices? I believe strongly that progress in Ulster will be greatly assisted if its affairs feature in a wider British context rather than being relegated entirely to a purely local one. I hope to play a part in achieving this.
The subject of today’s debate illustrates the point. The recent formation of an all-party diabetes group in the Northern Ireland Assembly creates a new focus on the issue there, while the highly regarded national organisation, Diabetes UK, embraces Northern Ireland within its work. One complements the other.
There are today some 20,000 children of school age in the United Kingdom with diabetes, of whom around 1,000 live in Northern Ireland. During my time as general secretary of the Independent Schools Council, in the course of which I visited many excellent Ulster schools, such as the Royal Belfast Academical Institution and St Malachy's College in Belfast, I had numerous opportunities to admire the resilience and determination with which such children strive to reach high standards and so lay the basis for success in their subsequent careers. I have always been greatly struck by the indomitable spirit shown by children with diabetes as they make their way through the various rounds of the Northern Ireland Schools Debating Competition, of which I have the honour to be president.
Children with diabetes and their families have in Diabetes UK a formidable champion of their interests. Naturally, its overall aim is to encourage all schools to follow the practice of the best, where, every day, children with diabetes enjoy a full school life because they receive the support they need. But in some schools there are undoubtedly problems to be overcome, as the detailed surveys and inquiries conducted by Diabetes UK show—the noble Lord, Lord Kennedy of Southwark, referred graphically to them. Staff are sometimes reluctant to help with insulin injections, a point to which the noble Baroness, Lady Walmsley, referred. That undoubtedly adds to the great burden on families. In a Diabetes UK survey in 2009, 35 per cent of the young people who responded said their parents either had to give up work or reduce their hours of work to support them with their diabetes in school. This is a matter of particular concern to the Northern Ireland representatives of Diabetes UK.
The problems could often be swiftly alleviated if schools followed the advice that Diabetes UK has provided in its excellent publications. Perhaps the most important is the admirably succinct Children with Diabetes at School: What All Staff Need to Know. It lives up to its title. To ensure that staff indeed know, governors and heads need to establish and enforce arrangements that are appropriate for their individual schools. In this, they face a particularly urgent challenge that emerges in so many areas of school life today: to reverse the intense pressure that teachers have felt for far too long to keep their distance from their pupils in case a close association is misunderstood. That simple, yet profound, factor has impeded progress in our school system. The Government have recently made clear their support for change to overturn this harmful trend. That would do an immense service to children with diabetes who, along with others suffering from serious health problems, need a close association with dedicated and sympathetic teachers.
I hope that this important debate in the House will assist the start of that urgently needed process. I am very grateful to the noble Lord, Lord Kennedy of Southwark, who initiated this debate, for giving me this opportunity to address the House for the first time.
Baroness Young of Old Scone
My Lords, I congratulate the noble Lord, Lord Lexden, on his dextrous maiden speech, which I suppose is an appropriate term for someone who bears the name of a batsman. He is of course steeped in the history and politics of the Conservative variety. Before he came to your Lordships’ House, he was instrumental in writing a history of 175 years of the Carlton Club and 80 years of the Conservative Research Department. I am sure that his historical perspective on politics will come in useful in these days of new experiments in government. As the noble Lord said, the Conservative Research Department was the cradle in which many illustrious Conservative Members of your Lordships’ House and the other place cut their teeth. I thank the noble Lord on behalf of your Lordships and on your behalf, if I may, wish him a fulfilling time in this House.
I also thank the noble Lord for cutting his maiden teeth on an important issue regarding diabetes. I of course declare an interest, which has already been revealed by other noble Lords, in that I am the chief executive of Diabetes UK. I thank the noble Lord, Lord Kennedy, for initiating this important debate and for his kind words about Diabetes UK, and I thank other noble Lords who have spoken and who will contribute on this heart-rending issue; 20,000 children under 15 have type 1 diabetes, another 1,400 have type 2 diabetes and an increasing number have both types. Noble Lords have given us many statistics and told heart-rending stories, and although many children every day enjoy a full school life, others struggle with control of their condition, without having to deal with the other disadvantages that other noble Lords have mentioned.
Every child with diabetes should be entitled to the full opportunities of education and not be dependent on parents, many of whom, in these straitened times, simply cannot afford to give up work. I want briefly to add my voice to calls for what is needed to allow that to happen. There should, in particular, be an end to inadequate and variable levels of funding for support in schools. If statementing is inappropriate for these children, what mechanism is? There needs to be more access to diabetic teaching assistants and to proper education for teachers, and fellow pupils, to gain an understanding of diabetes and other support that pupils need from time to time.
Can the Minister assure us that the Government will put clear and specific duties on schools and local authorities to ensure continuity of care, in order that children with diabetes can benefit from a proper education? We need an end to the postcode lottery. I hope that there is no increased use of the phrase which struck terror into my heart when I was in conversation about the postcode lottery in healthcare—that this was “no longer a postcode lottery but postcode democracy”. I hope that the excuse of decisions being made on a local basis is not used to support very uneven standards of care and support for these children in schools. I ask the Minister to ensure that all schools be required to have a medical policy to define how they support the health needs of children with long-term conditions; there are more than 1 million children with long-term conditions in schools. There needs to be clarity of responsibility for funding support for children with diabetes in school and an end to the ping-pong between health and education authorities, which are both anxious to pass responsibility for support for these children backwards and forwards. There needs to be clarity on who is responsible and who can be held responsible.
Ideally, we would like to see a full-time qualified nurse for each secondary school and for each cluster of primary schools to help support children with diabetes. Also, as the noble Lord, Lord Kennedy, said, we need an individual healthcare plan for each child that is prepared jointly between the child, the parents, the doctors and the teachers, and regularly updated. I hope the Minister can tell us how appropriate healthcare can be assured in educational settings, because it is not just about supporting these very vulnerable and often heavily challenged children in their school lives. It is also about reducing the long-term financial costs of the condition to the NHS, reducing the adverse economic costs and emotional impacts on families, and ensuring that these children have a less tough time than they currently do, as well as achieving physical and economic well-being later in life.
Lord Harrison
My Lords, I, too, congratulate the noble Lord, Lord Kennedy, on being our cheerleader today in this debate. I congratulate the noble Lord, Lord Lexden, on his excellent maiden speech. Is he sure he is not a batsman with that maiden over? There are moves to bring together the parliamentarians of the four nations of the United Kingdom; in fact, I think we propose to travel to Belfast to meet our colleagues there and perhaps learn more about what happens in Northern Ireland.
I congratulate the noble Baroness, Lady Young of Old Scone, who is clearly now well into the job of being executive director of Diabetes UK, and I declare an interest as vice-chair of the all-party group.
I contracted type 1 diabetes at the age of 21, and a few months later my nephew, then aged seven, contracted type 1 diabetes. His mother is my sister. When that happens in a family it affects the child and the parent or guardian, but also the wider family and the community. For the child in those days, when you had to do an insulin injection with all the equipment that existed then, it was a terrible business. These days we have wonderful insulin pens which you can get in many colours, and which at least look interesting when the child is with other school children.
The parent of a diabetic child is particularly affected, because they have to work even harder. Parents are always zealous to ensure that the education of their children is secured, but it means that they have to work out a balance within the family. There may be other children, a partner and so forth, and the wider family is also affected. I felt guilty that my nephew, a seven year-old, had contracted diabetes, when I had contracted it at the age of 21 just a few months earlier. I somehow felt that it was a responsibility of mine. Of course, it affects the wider community, which is why the noble Lord, Lord Kennedy, pointed out the effect on schools receiving children who are diabetic.
I want to talk about something positive. Some two or three years ago, the noble Baroness, Lady Young, might like to know, Diabetes UK put on an absolutely wonderful event in the House of Commons which brought together about 100 children with 100 carers to meet us as parliamentarians. I was exhilarated that day, and I felt absolutely humbled, not only to meet these youngsters of seven, eight or nine but also to meet the parents. One of the things that I observed was that, for a change, the children were meeting other children who were in the same boat, and the mothers—and they were principally mothers—were meeting other mothers and carers. That is my great worry. That occasion was thrilling, but so often within the school context the child, the carer or parent is isolated. We must redouble our efforts to remember that and to give further and greater help.
I refer to another event which the noble Lord, Lord Hill, might like to find out a little more about. Two or three years ago, a school from the West Country came up to address parliamentarians in the House of Commons. What was unique about the visitors was that they brought all the children from a particular class who had grown up with children who developed diabetes during their school years. These children had a better understanding of diabetes because the school had made an effort to teach them about it. Their rallying round was thrilling and clearly provided a wonderful support service for those with diabetes. I do not know whether that school still exists and whether we can find out more about it but their experience should be replicated. For the children who were not diabetic it was not a burden; it contributed to their better understanding of treating people who are afflicted by this disease.
Although I think that the noble Lord, Lord Hill, has already been asked this question, I want to ask him about the clarity of responsibility in placing specific duties on schools and local authorities through upcoming legislation to ensure that there is support and continuity of care at schools for diabetic children, as that is crucial. There needs to be a thread running through the legislation to provide that protection. We need to end the current patchwork quilt of varied support up and down the country, and we also need sufficient and accessible funding to help all those who are involved in looking after diabetic children. Again, schools, local authorities and health authorities need to work together. We need to ensure that all schoolchildren with diabetes can take part in all aspects of schooling. Never again must kids be excluded because of the misunderstandings that exist. Would the Minister care to say something about the possibility of having a full-time nurse in all secondary schools, or at least a full-time nurse in a cluster of primary schools? She—it normally is a “she”—can be crucial in spreading the news to teachers about looking out for the child who is diabetic and who perhaps is suffering a hypoglycaemic reaction, or “hypo”. That needs to be better understood.
We need better healthcare planning within schools. We need to ensure that each school has a medical policy for children with long-term medical conditions, who I believe number something like 1 million in the community. Each diabetic child should have an individual and regularly updated healthcare plan with the involvement of the child, the parent and the doctor. Diabetes UK is rightly worried about the education and children’s Bill, which is coming up, in that it removes duties on schools to co-operate with local planning arrangements, which are so vital. The growth of academies, where there is no direct link to local authorities, fractures that important complementary approach. It is unclear from the Health and Social Care Bill how schools fit in with the new framework. Perhaps the Minister could say more about that.
In the final minute or so available to me, I should like to refer to something that the noble Baroness, Lady Young, may be able to take up in her role, supported by the Government. I may be wrong but I am not aware that any of the school dramas on our TV screens show diabetic children. More importantly, if they do, I am not sure whether they show them as a positive image, rather like my example of the schoolchildren supporting the members of their class who had diabetes. I wonder whether the noble Baroness could explore that through her agency. It was done recently with regard to someone with Parkinson’s disease. I recall a film which had a positive image, where the heroine had acquired Parkinson’s at a very young age. There are interesting and inspiring stories to tell about this and we should take every opportunity to do so.
Baroness Crawley
My Lords, it is a delight to follow my noble friend Lord Harrison, who is such a great ambassador for people living with diabetes. May I add my thanks to my noble friend Lord Kennedy for bringing this complex and important issue before the House with such clarity and commitment? I also welcome the informative and humorous maiden speech of the noble Lord, Lord Lexden. We look forward to hearing many more of them in the House.
In preparing for this afternoon’s debate, I looked at the 2008 report of the UK Children with Diabetes Advocacy Group. I found several case studies of children who have type 1 diabetes but who, beyond that, should be leading happy, fulfilling and productive lives at school. It is to our shame that that is not the experience for a large and significant group of children with diabetes across the country.
In the case studies, Matty’s mum said:
“Matty decided that he wanted school dinners this week. At the end of last term I went in and saw the cook and the dinner lady and explained that he would need to go to the front of the queue. This morning he told me that he didn’t want school dinner because the dinner lady had told him off for walking to the front of the queue and made him wait until last.”
Charlie’s mum said:
“When Charlie started reception we had a major fight on our hands with the headmaster who expected Charlie to do all his own blood testing, choose an appropriate snack and go and get it from the store cupboard – all at the age of 4 and only having been diagnosed 4 months previously!”
In case we form the impression that the fault always lies with the school or with the local authorities, the next case study will put us right. I quote the case of Anthony:
“Unfortunately, when we had a meeting with the school and our DSN, (who we thought was there to support us) made matters worse. The DSN seemed to do her utmost to discourage the school from taking on procedures such as testing, her attitude being that schools should not have to take on such levels of care. We were quite surprised and hurt at her attitude. It made us feel very much on our own in the pursuit of a good standard of care for a young child starting school”.
The obstacles were not just raised for families through PCTs in these case studies. In another study, the health and safety officer told a teenage boy with diabetes at a secondary school that he could not carry his insulin and self-monitoring equipment with him at school. This meant that if he felt unwell he would have to go a considerable distance to the school’s reception area to carry out tests, which would have put him at risk.
Obviously, as my noble friend has said, there are children with diabetes who enjoy a full school life because of the support their school gives them. But the sad little stories from desperate parents that I have quoted tell us that by no means all children have that opportunity in 21st-century Britain. Why does the Minister think that such inconsistency of policy and practice across local authorities exists, despite guidance being offered by the last Government, and what are his Government’s plans for dealing with this inconsistency? I am certainly not making a political point here, because things could not have become so much worse for this group of children during the eight months of the coalition Government. We all have questions to answer as far as these children are concerned. However, I am concerned by the scale of future local authority spending cuts, as well as by the demise of PCTs and the reorganisation of the NHS. Both these coalition Government policy commitments will throw an already complex picture for children with diabetes into sharper relief.
How does the Minister respond to Diabetes UK’s concerns, shared by this side of the House, and mentioned by the noble Baroness, Lady Walmsley, that the changes proposed in the education and children’s Bill, which will remove the duty of schools to co-operate with local planning arrangements, together with the growth of academies with no direct link to a local authority, risk further fragmentation of services for this group of children? It would be helpful to learn from the Minister how schools are expected to fit into the new framework envisaged in the Health and Social Care Bill.
I know that the Minister, who I have a great deal of respect for, will agree with me that it is intolerable for parents and children who have this condition to be treated so differently in so many different schools, different LAs and different PCTs, under different head teachers, by different nurses and different staff. These children and young people do not deserve such a cruel lottery of treatment in their schooling. We know that all schools have a common-law duty of care. They also have a duty to promote pupils’ well-being. What does the Minister feel is the current legal framework for ensuring school support? I know that under the previous Government’s Every Child Matters policy, of which I am immensely proud, all schools were required to have a disability equality scheme. Does the Minister believe that further guidance is required?
What is the Government’s response to Diabetes UK’s recommendations? They are ably set out by the noble Baroness, Lady Young: that there should be multi-agency working across schools; that there should be proper training for staff in schools, to feel confident when dealing with children with diabetes; that there should be an individual healthcare plan for every pupil; and that there should be one full-time qualified school nurse for each secondary school and cluster of primary schools, as noble Lords have said.
I would be happy for the Minister to write to me on some of these points. As I have said, our own record in this area is not so burnished that I demand answers from him. I know that all noble Lords who have taken part in this important debate will want to see an end to the confusion, alienation and misery that too many children with diabetes and their carers are currently experiencing.
The Parliamentary Under-Secretary of State for Schools (Lord Hill of Oareford)
My Lords, like other noble Lords, I congratulate the noble Lord, Lord Kennedy of Southwark, on securing a debate on this important issue. We have already heard a significant number of points that the Government will need to reflect on. I pay tribute to the work that he has done, both here in Parliament and as a member of Diabetes UK, to raise awareness of the problems that diabetes sufferers endure. I was glad to have the chance in the small hours of the morning last week to discuss some of the issues that he has raised; it was one of the few benefits that I could see of the Parliamentary Voting System and Constituencies Bill, but we must be grateful for small mercies.
I join other noble Lords in congratulating my noble friend Lord Lexden on his excellent and entertaining maiden speech. I could not work out where I sit on his Lewis Namier scale—probably somewhere near the bottom. It was my noble friend who offered me a job at the Conservative Research Department after I had been turned down by a number of no doubt wiser people in the CRD. So it was he, perhaps inadvertently, who set me on my way, and whom indirectly I should thank—or blame, I sometimes think—for my being here today. I think that I speak for all noble Lords in saying that we look forward to his contributions to debates in the future.
I shall briefly recap on some of the figures that we have already heard and, in doing that, I welcome very much the comments made by the noble Baroness, Lady Crawley, and the tone and way in which she approached this issue. This is not a political issue, and the approach and the legislative framework taken by the Government follows the one taken by the previous Government.
We have heard some of the figures showing the scale of the problem. There was an audit in 2009 which showed that there are an estimated 23,000 children with diabetes, the vast majority with type 1. The peak age for diagnosis is between 10 and 14 years, but type 1 can affect children in their preschool years. No one would want a child with a long-term medical condition such as diabetes to miss out on school life or be treated less favourably because of it. We have heard a number of powerful examples and personal testimony that make that point.
It is also true—and this lay behind some of the remarks made by the noble Lord, Lord Harrison—that there are many examples where schools provide very good support to pupils, especially in primary schools, where they are working closely with parents and the local NHS. There is one example in Nottinghamshire, which other noble Lords may also know, where the county and city councils and the local NHS trusts run training for school staff. They allow heads to apply for reimbursement towards funding staff, and run a network of diabetes specialist nurses to cover primaries and secondaries. So there is good practice, and one issue that we need to reflect on is how we can make that good practice more universal. I accept the point made by a number of noble Lords that provision is currently patchy. We know that there are cases in which parents do not feel—and not only do they not feel it but it is obviously true—that they get the support that they need. We heard today of children with diabetes having to miss classes or be excluded from school trips or being left to inject themselves unsupervised, with parents feeling that they are forced to reduce hours or give up work or move schools because they do not trust staff to carry out blood tests or carry out insulin injections.
I acknowledge the picture that has been painted by Diabetes UK in its report, State of Diabetes Care in the UK 2009. While there is excellent practice out there, in other areas it is patchy. I also understand the strength of feeling behind its Children’s Charter report. It is a view that has been expressed by noble Lords today and by my noble friend Lady Walmsley, in looking at it from an international perspective. There should be equal access to treatment, high-quality medical care and support in schools for children and young people.
I shall briefly summarise the legal framework and then move on to talk about some of the other issues raised and address directly the request put to me by the noble Lord, Lord Kennedy of Southwark, about meeting and how we might take things forward.
Schools are responsible for drawing up their own policies in the light of their statutory responsibilities—for example, health and safety legislation or the Equality Act 2010—and local needs. The department recommends that schools and their employers should have policies in place on the management of pupils’ medicines and on supporting pupils with medical needs. There is no legal duty on school staff to provide medical support, to administer medication or to supervise a pupil taking it. Like the last Government, we do not have plans to change that. However, as has been pointed out, there is a common-law duty on all staff to act in loco parentis when children are at school.
To encourage schools to provide support for children with medical needs, the DCSF, as it then was, jointly with the Department of Health, published guidance on managing medicines in schools and early years settings back in March 2005. The DFE, together with the Department of Health, is currently reviewing that guidance. Perhaps that provides us with an opportunity to reflect on some of the points that have been raised. I invite Diabetes UK, perhaps through the noble Lord or through the noble Baroness, Lady Young—I am spoilt for choice—to speak to my officials about that. We also hope that we can use the review as an opportunity to draw attention to good practice. Again, I hope that Diabetes UK can help us to champion that good practice.
It is sensible for schools to have clear general policies in place to support pupils with medical needs. For pupils with serious medical needs, it is sensible for schools to draw up individual healthcare plans setting out in black and white the level of support that is needed, and clarifying for staff, parents and pupils the help that will be provided. Our guidance makes it clear that any volunteers, usually school support staff, who carry out such duties on a daily basis should be properly supported in doing so.
Staff who volunteer to assist with any form of medical procedure should be given reassurance that they will not be sued for any action they take in providing the vital support that pupils with medical needs may require. We know, once they understand the reasons for the injections and blood tests, and have been adequately trained in practical skills and provided with reassurance that they are acting within the scope of their employment they are generally keen to help individual children.
As has already been discussed, the Government are reforming the way in which the NHS deals with public health—in particular, how it works with local children’s services. The White Paper, Healthy Lives, Healthy People, published last November, has a clear principle at its heart: that prevention is better than cure. It sets out a clear plan to reduce health inequalities and causes of premature death and illness.
That means making sure that there is a major role for the NHS, particularly for school nurses and community healthcare teams as well as paediatric diabetes specialist nurses. School nurses will continue to have a vital role in providing training and support to schools, in developing health reviews at school entry and in managing pupils’ well-being and medical and long-term conditions.
I reassure noble Lords that we are listening to the concerns that have been raised and are working closely with the Department of Health to ensure that no child misses out because of their long-term medical condition. We are also working closely with the department to enable schools to draw on additional expertise from local health professionals and children’s services to meet the needs of their pupils. We seek in particular to develop a new vision for school nurses that reflects their broad public health role in the school community. I would again invite Diabetes UK to talk to the Department of Health about this work.
Perhaps I may respond to some of the specific issues that were raised. I will write to the noble Baroness, Lady Crawley, if I have failed to respond to all her points. I was asked about academies. It is the case that academies have to meet independent schools standards regulations. They require them to have regard to the Department for Education guidance, Health and Safety: Responsibilities and Powers, which sets out the key elements of a health and safety policy, one of which is supporting pupils with medical needs. Having visited a lot of academies, I do not think that there is any intrinsic reason to believe that they will carry this out less well than any other school. Heads of academies who I have met care about their children just as much as the heads of any other school. Academies are free to buy back services from a local authority.
I was asked by my noble friend Lady Walmsley about competitive sport. PE remains compulsory from the age of five to 16. The Government are keen to encourage competitive sport. I agree with her that it can play an important part in dealing with the issues. I am very happy to discuss with her further the slimmed-down Ofsted regime. Of the four categories that we have outlined, one is to do with behaviour and safety.
In response to questions about funding and as noble Lords might expect, there is little specific that I can say, but I was struck by the point made by the noble Lord, Lord Kennedy of Southwark, who said that this not a matter primarily of money and that it is much more to do with finding ways of working sensibly together.
Like, I think, all noble Lords, the Government are committed to ensuring that all children and young people with long-term medical conditions get the help and support that they need while at school. We will work closely with the Department of Health to ensure that. I would be delighted to meet the noble Lord, Lord Kennedy, to discuss this further or perhaps to point him towards my honourable friend Sarah Teather, who has departmental responsibility for these matters. I am grateful to him, as are all other noble Lords, for giving us the opportunity to debate these important issues.