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The Bill also highlights the importance of local authorities and local primary care trusts working with schools to provide children living with long-term conditions such as autism, asthma, diabetes, epilepsy and anaphylaxis with the support they need. The Under-Secretary of State for Children, Schools and Families, the hon. Member for Portsmouth, North (Sarah McCarthy-Fry), and I recently spent a great deal of time on the Apprenticeships, Skills, Children and Learning Bill talking about how important such co-operative working is. She will doubtless draw the House’s attention to the new conditions within that Bill that will further help to enable co-operative working.
There are already significant obligations on PCTs, schools and local authorities to support children with long-term conditions. Indeed, since September 2007 schools have had a duty to promote the well-being of all pupils, including those with long-term conditions, under Every Child Matters. Children’s trust boards and young people’s plans are designed to provide the co-ordination between local authorities and PCTs that the hon. Member for Coventry, South rightly identified is too often lacking. Indeed, there are already measures in place in the Disability Discrimination Act 1995 to underline the importance of supporting children with long-term conditions.
Mr. Stewart Jackson: Does my hon. Friend agree that one of the most vital aspects in the provision of care for children and young people that certainly should not be overlooked is respite care, particularly for autistic children, and especially when there is more than one such child in the family? Indeed, I have had constituency casework in that respect. Does my hon. Friend agree that the focus should continue to be on respite care, which is a Cinderella service for many local authorities?
Mrs. Miller: I thank my hon. Friend for reminding us of that important service, which can be a lifeline for many families and can often help to ensure that they can continue to cope when they have particularly difficult and stressful situations to deal with. He is right to say that it is a Cinderella service, and that we should ensure that it continues to get the support it deserves. The Bill deals with the question of how difficult it is to get such services to work together, and without the support that my hon. Friend mentioned other things can easily start to fall to pieces.
It is important to remember that schools have a legal duty under the Disability Discrimination Act to children with long-term conditions. The Act’s definition of “disabled” is drawn very broadly and covers everybody with
“a physical or mental impairment which has a substantial and long-term adverse effect on his”
“ability to carry out normal day-to-day activities.”
It would seem there is no apparent shortage of legislation, so why are parents and children still struggling to cope in the way the hon. Member for Coventry, South has already outlined, which has left him feeling that it is absolutely imperative that he introduce this Bill today?
There is an abundance of fine words in existing legislation, but a sharp contrast becomes apparent when one looks at the availability of medical and specialist
support in some areas, which leaves too many children—especially those with diabetes—finding it difficult to manage their conditions effectively. Two years ago, the Government produced a report highlighting the fact that our system of support for children coping with diabetes lagged behind European systems. Children with diabetes faced a postcode lottery, with many having good access to support, but many not. Indeed, according to the Government’s report, one in 10 young people with diabetes did not have a consultant with specialist expertise in diabetes, and nurses providing the type of specialist support that such children need, such as advice on diet and other matters, were stretched thin, with case loads well in excess of the Royal College of Nursing’s recommended levels. That left 84 per cent. of diabetics aged under 16 with poor or very poor control of their condition.
My hon. Friend the Member for East Worthing and Shoreham (Tim Loughton) has already done a great deal of work on these matters, and I commend him for the commitment he has shown to children’s health issues during his years in Parliament. He has highlighted the critical role played by school nurses in providing a vital connection between health, education and children’s well-being, linking school and home. They can identify precisely the types of vulnerable young people we are talking about today and help them to cope by providing support in school. However, a written answer from the Under-Secretary of State for Health, the hon. Member for Brentford and Isleworth (Ann Keen), published on 22 April, graphically shows that the Government are well behind schedule in delivering on their promise to have at least one full-time, year-round, qualified school nurse working with each cluster of primary and secondary schools. The shortfall of more than 1,000 school nurses nationwide is significant because it is specifically cited by head teachers as one of the key barriers to enabling schools to support children with long-term health conditions.
Children are finding it difficult to cope and there is a shortage of school nurses: it is little wonder that teachers and schools feel ill equipped to provide for children who need support either to get through the day or to medicate themselves during the day. The inconsistency in the availability of professional support on the ground and in our schools, the lack of training for school staff, and the growing fear among teachers about the threat of litigation if they administer treatment and things go wrong, perhaps through no fault of their own, are all factors that must be considered alongside the Bill’s provisions. Conservative Members certainly support the intention behind the Bill of enabling children to get the education and the opportunities they need at school, but we recognise the importance of ensuring that we have on the ground professional support for teachers. Only in that way can the school outcomes that we want for all children be achieved. All the issues have to be debated in more detail than today’s debate allows.
Children do get the support we want them to have in areas where local authorities and primary care trusts work together to support schools and to put in place the practical measures that are needed. Areas such as Birmingham already have successful plans to support children with long-term conditions. In Birmingham, when a child is diagnosed with diabetes or any other condition, the PCT promptly goes into schools to provide the relevant training to class teachers and other key
staff, and written guidance and training materials are provided to the school. The city council provides insurance cover for all staff, which is dependent on their receiving training from a health care professional. That helps to overcome some of the fears of litigation that I think hon. Members will have come across in their constituencies, which can put a barrier in the way of teachers helping in the way that they want to. There are other examples of that type of practice up and down the country. I hope that in Committee Members will look further at how the good practice of authorities such as Birmingham can be made more widespread across the country.
Again, I commend the hon. Member for Coventry, South for introducing the Bill. I wish the Bill well, and offer it support from the Conservative Front Bench, with the caveats that I mentioned. I hope that in Committee the issues can be dealt with in more detail, and that further provisions can be put in place, so that children who have some of the most difficult conditions to deal with are encouraged to excel and achieve their potential in school.
1.5 pm
Mr. Neil Gerrard (Walthamstow) (Lab): First, may I congratulate my hon. Friend the Member for Coventry, South (Mr. Cunningham) on the Bill? It is well worth while, and he is getting support from across the House. He put the case for the Bill, and pointed out the problems faced by some children in some schools, but the hon. Member for Basingstoke (Mrs. Miller) has just mentioned some examples of good practice. Not every school is failing, but some children in some schools have problems.
My hon. Friend the Member for Coventry, South, mentioned the evidence brought to us by Diabetes UK and a range of other organisations. One thing struck me when I looked at the evidence. Of course there are medical needs, and there are cases where it would be very helpful if people, including teachers in school, were aware of those needs and could perhaps make sure that a child got treatment and took their medication and so on. However, it is not just medical needs that matter. Examples were pointed out of children being excluded from lessons or extra-curricular activities, sometimes because of a misunderstanding about their conditions and the long-term problems that they had to deal with. There were examples of children having to eat alone if they had specific food requirements. It struck me, when looking at that evidence, that one could over-emphasise the medical aspects. There are social and other aspects, too. In some cases, what is needed is understanding of, and training about, social needs as well as medical needs.
The Bill extends the general duty already on schools to support pupil well-being, and makes specific requirements relating to health. I understand the concerns that have been expressed by one or two Opposition Members about not wanting to place on schools too-onerous requirements that would have major resource implications, whether financial or in terms of human resources. I think that we are all conscious of that; we have to be reasonable about what we expect a school to do, given its resources.
My hon. Friend the Member for Coventry, South, who opened the debate, and the hon. Member for Basingstoke pointed to what can be done if not only
schools but primary care trusts and local authorities are involved, and if we get the right levels of co-operation. It is not just a case of saying to a school, “Here, get on with this”, when it does not have the help and support that it needs from other organisations, particularly PCTs.
In some cases, understanding is missing; I will refer in a bit of detail to one specific condition. I have spent a lot of time in my years in the House dealing with issues to do with HIV. Schools may have to deal with that long-term condition if a pupil has an HIV infection. The situation is quite complex. It raises issues not so much about treatment as about confidentiality, for instance. The Bill would require a school’s governing body to have a policy about how a condition should be dealt with, and appropriate training would go a long way towards dealing with some of the problems that children currently have to face.
Mrs. Maria Miller: Does the hon. Gentleman share my concern about the growing number of children being turned away from primary and secondary schools because they have HIV? That shows a lack of understanding not only of the children’s condition, but of the law.
Mr. Gerrard: Absolutely. I shall give one or two examples of that. There is indeed ignorance of the law. As the hon. Lady pointed out, the Disability Discrimination Act 2005, which applies to schools, specifically refers to HIV. Under the terms of the Act, someone should be regarded as disabled from the point at which infection occurs. By ignoring that, a school might well be breaking the law. The difficulty for many parents would be how to get the law enforced. They may not even be aware of the provisions of the Disability Discrimination Act.
A further problem in relation to HIV is that of confidentiality and disclosure. HIV is not a notifiable condition. It is up to the person living with HIV whether they choose to disclose the fact that they have HIV. There is no requirement to disclose the condition. Parents of children with HIV are unsure what they should or should not do. HIV is a condition that, we know, attracts stigma and discrimination, so a parent may wonder whether to disclose their child’s condition and what the consequences might be for the child.
There are examples where that has gone badly wrong, so there is a clear case for much better guidance to be given to schools on how they should deal with children with HIV. If my hon. Friend’s Bill went through, a school would be required to have an appropriate policy.
Mr. Stewart Jackson: I pay tribute to all the work that the hon. Gentleman has done through the years campaigning on HIV/AIDS. We have national clinical frameworks, within which there is leeway for local authorities and various agencies to respond appropriately to the needs of their area. One of the possible criticisms of the Bill is that it takes an overly generalised approach. In some respects it may be said that it undermines the existing general duty on local education authorities and the NHS to provide the services that they are already providing to children with long-term conditions.
Mr. Gerrard:
I am not entirely sure I understand the point that the hon. Gentleman is making. I can see that there may well be differences in the incidence of a particular condition. HIV is an obvious example. In London particularly, there is a relatively high incidence,
but there are rural areas where the incidence is extremely low, so it is much more likely that a school in London might have to deal with a child who has HIV than a school in, say, rural Devon. That does not mean that that could not happen in rural Devon. It is not rocket science to draw up some fairly simple, clear guidelines about how a school ought to approach the issue.
Let me give some examples of what can happen to children. A child attending a nursery school attached to a primary school in Middlesex was due to start in the reception class in September, and the child’s mother asked the head teacher if the school had any policy on informing parents in the event of, say, an outbreak of chickenpox. The head teacher asked why, and the mother explained that her daughter had an auto-immune problem, HIV. That information was then spread around the school and the head teacher told the mother that all the teachers had concerns about teaching her child, and that the dinner ladies would have to be told in case the child had an accident. The mother tried to explain that no one was at risk simply by being in the same room as her child, and eventually the head teacher said, “Look, you really ought to take the child to another school, and don’t tell them that your daughter has HIV. Just enrol her without telling them.” That is a perfect example of a complete lack of understanding. We are not asking the school to be able to treat someone with HIV; we are asking it to have some understanding about what it means.
Another case concerned a child transferring from a primary to a secondary school just last year. The primary school knew about the child’s HIV status and passed that information on to the secondary schools without asking for the parents’ consent, and the secondary schools then said that they wanted to inform all sorts of people in the school about the child’s status.
Those are the sorts of things that can happen when people within a school are not aware of how they should deal with a child with HIV. That is one specific condition, but I could quote a range of examples. I do not suggest that such problems arise in every school, but they do arise, and too frequently. If there was training, if there was some understanding, if there was a policy within schools of just how a child with such a condition should be dealt with, we would avoid these problems. That is where I see the value in the Bill. Yes, I understand the resource implications and that we might have to think through carefully how we bring in some of the provisions, what conditions are covered, and whether the condition would require a school nurse to be available before the school could be expected to deal with the problem.
Mrs. Maria Miller: The hon. Gentleman is being very generous in giving way. He makes a powerful commentary on the importance of understanding long-term illnesses and conditions such as HIV in schools. Does he therefore share my concern that that understanding is in no way helped when we have such a massive shortfall in the number of school nurses throughout the country who would be providing the professional advice, support and training that he so eloquently advocates?
Mr. Gerrard:
There is a problem. We do need more school nurses, and I do not think that any hon. Member would disagree that we should be trying to fill that gap
and provide more school nurses. That is why we need to think through how the Bill will be implemented and what conditions may be included, perhaps initially and then later. But that should not blind us to the notion that better training and information could help, and that where there are examples of good practice, as the hon. Lady mentioned in her speech with regard to the PCT and what is being done in Birmingham, they could be built on in other parts of the country. That would certainly help.
My hon. Friend the Member for Coventry, South has done an excellent job in bringing the Bill to the House, I hope that it will be allowed to make progress, and I look forward to hearing the Minister’s comments in reply to the debate.
1.19 pm
Mr. Stewart Jackson (Peterborough) (Con): I shall give a cautious welcome to the Bill. The hon. Member for Coventry, South (Mr. Cunningham) is to be commended on his work, on his collaboration with the charity and voluntary sectors and on his generous cross-party tributes to my hon. Friends on the Front Bench and to other Members.
In the Bill, there is much that any sensible, caring and community-minded Member would support. Schools would be required to produce and implement medical conditions policies and upgrade their current guidance, and every child would have an individual health care plan. We consider those proposals to be sensible, but I have a concern about the Bill, although I add the caveat that we support its intent. The Bill involves the head and the heart, and our heart is with it, because there is a demonstrable need for such policies. The hon. Gentleman kindly provided the national figure of about 1 million for those children and families who are affected by a serious medical condition, so something needs to be done. Indeed, there is an argument—a slightly tangential argument—that the Government should have introduced their own Bill, rather than rely on one of their Back Benchers.
My concern is with the element of compulsion, and perhaps I did not make that clear to the hon. Member for Walthamstow (Mr. Gerrard). We must not disregard best practice locally between local NHS trusts and local education authorities in carrying forward national clinical framework policies on, for example, diabetes. My constituency has a high prevalence of several long-term conditions—diabetes being one, chronic, obstructive pulmonary disease and asthma being others. We do not know why, but asthma affects a large number of young people. In my constituency, in particular, it affects the 12 per cent. of people who have a south Asian background.
We must not lose sight of the wider context, particularly when the issue comes back, as it often does, to funding and resources. Respite care, as I said to my hon. Friend the Member for Basingstoke (Mrs. Miller) is a big issue, and it is difficult to provide adequate daily and weekly respite care for parents and guardians of children with long-term conditions. No local education authority will ever say that it has sufficient provision and resources to carry out that work.
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