Children and Families Bill

Baroness Grey-Thompson Excerpts

Wednesday 23rd October 2013 Grand Committee

There is one issue that no one has raised so far: children with medical conditions who have some learning need during their condition. It may not be enough to warrant a full statement or education and healthcare plan, although, certainly in the case I am about to use as an example, it would have been helpful. The case is that of the young lady I met through CLIC Sargent. It would have been extremely helpful for her to have had co-ordinated educational support, but there was no recognition of the effect that drugs, such as those used in chemotherapy, have on patients. Often there is short-term memory loss and brain fog, and with a brain tumour there can be a serious cognitive impact that may never improve. Those effects are omitted from Amendment 241A. That may be because they are not specifically included, but many parents are concerned that their children with medical conditions have learning issues that are completely left out in the cold. I hope that the boundaries that the noble Lord, Lord Low, and my noble friend Lord Storey talked about can be merged so that we can ensure that the child and the child’s needs are at the heart of what we are doing.

[Baroness Grey-Thompson (CB)]

My Lords, I rise to speak in support of my noble friend Lord Low. I have looked to my experience in school—admittedly a few years ago—and thought about how the Bill might have affected me. I do not have special educational needs, and nor does my noble friend Lady Campbell of Surbiton, who is not in her place, but we both have access needs. My noble friend was considered to have considerable needs, and I was considered to have lesser needs. I was sent to a school miles away from where I lived. At the time it was the only school in South Glamorgan that was allowed to take wheelchair users. One might imagine that it was an accessible school. However, access was appalling and nothing in particular was done to improve it. There was an occasional ramp in the wrong place, and six people were employed to carry wheelchair users up and down the stairs. I hope that it is better today. I guess it was a product of its time.

Physical access would be better, but we have to take into account other interruptions for things such as physiotherapy in my noble friend Lady Campbell’s case or missing school. I missed a period of school to have metal rods inserted in my spine to stop it collapsing. I had to wear a plaster cast jacket from my chin to my hips for six months, which left me with very restricted movement, but nothing was done to make sure that I could stay in school. I just had to make do. I then missed a year of university because I snapped my metal rods—admittedly I was training to be a Paralympian, but that is an aside. However, it was such a major procedure that the only option for me was to write 12 essays and sit my exams within two weeks of university or to drop out of the whole year. There was nothing in place to think about how my impairment affected my ability to study. My noble friend Lady Campbell told me that because of physiotherapy and missing classes she was considered and classified as a “slow learner”. Accessibility and these other issues have a massive impact on the ability to learn and the opportunities that might arise out it.

I also wish to speak at the request of the noble Baroness, Lady Wilkins, who cannot be here today because she is at a family funeral. She strongly supports Amendments 87 and 105. She says the government Green Paper, Support and Aspiration, outlined a vision of support for disabled children and young people and those with special educational needs. It provided a vision of a more coherent and joined-up approach to meeting the needs of these children and young people. However, the Children and Families Bill concentrates on children with special educational needs only, to the detriment of disabled children. Despite calls from the Education Select Committee following pre-legislative scrutiny, and Members of the House of Commons during debates on the Bill, the Government have refused to include disabled children and young people without SEN within the scope of the reforms.

Research has estimated that around 25% of disabled children may not have SEN. Yet it is just as vital that these children and young people have access to the improved services and better co-ordinated provision that should be the outcome of the draft provisions. By making the changes proposed in Amendments 87 and 105, the Government would ensure that they keep their promise to make the new system better for all disabled children and young people and their families. In addition, the Government will also ensure that all local authorities work in the most streamlined and efficient way to provide services to disabled children and young people, and those with SEN.

[Baroness Benjamin (LD)]

My Lords, I, too, thank the Minister for his amendment because it is a great way of starting the debate. I have put my name to Amendments 220 to 222 because, as we have already heard, too many children with health conditions are not getting the support they need in schools and this problem needs to be addressed. They include, as we have heard, children with diabetes, epilepsy and incontinence and many others who all need greater consideration. However, I want to concentrate on children who suffer from sickle cell disorder, an invisible illness.

There is a strong feeling among doctors, medical practitioners and those working with children who suffer from sickle cell that provision of community nurses who deal with sickle cell sufferers should be expanded and more resources made available in schools. According to a British Educational Research Journal article, many young people who suffer from sickle cell disorder report extensive negative experiences at school. Around half have been prevented drinking water in class and going to the toilet. These are simple, basic needs of sickle cell sufferers. More than one-third were made to do unsuitable exercises and were called lazy when they got tired because of their sickle cell condition. Awareness needs to be raised by nurses visiting schools whenever and wherever necessary to support and educate staff, particularly sports teachers, about simple practices such as children getting dried off quickly after swimming, cooling down after vigorous exercise and being allowed to drink freely in class. Staff also need to be aware of the brain problems, such as silent stroke, that can occur at any time to those suffering from sickle cell.

Young people were reluctant to disclose that they had sickle cell, as they found many teachers were not knowledgeable about the disorder and felt it might be seen as a disadvantage. In some cases it can be, because if they have an attack or a crisis they have to miss lessons at school and therefore do not reach their full potential. It is all about equality, about educating schools and about training. The provision of specialist nurses in the community is also patchy and not well resourced. This needs to change.

The Sickle Cell Society believes that there needs to be a specific guide for schools on sickle cell disorder, rather than relying on generic guidance. Managing Medicines in Schools is limited because it refers only to medication and what to do in an emergency. It misses out the whole area of prevention and preventive measures, which is vital to keep those with sickle cell disorder safe and well. Also, it is no good having advice on managing medicines if school staff can simply refuse to administer them. Research shows that only a quarter of schools would agree to give children with sickle cell disorder mild painkillers, which is a problem for those suffering sickle cell, who need such medication if they have a crisis or an attack. We need to rewrite the guidance Managing Medicines in Schools to include sickle cell, which is the most common single genetic condition in England, affecting one in 1,850 of all births in England.

I know that the Government’s view is that the local school is best placed to know the needs of its children, but research has shown that schools are clearly not well placed to do this with sickle cell disorder and need considerable help and guidance to respond adequately. All children with medical conditions are supposed to have an individual healthcare plan, but research shows that only 43% of schools with children with sickle cell disorder even claimed to have such a plan. Checking that all schools have such plans in place for children with sickle cell disorder is essential. If such a policy is implemented it will reduce admissions of sufferers to hospital, which is an added, unnecessary strain on the NHS. Unfortunately, children suffering from sickle cell disorder do not have any provision under special educational needs; therefore I believe that a statement of special educational needs is necessary to help protect these children’s well-being at school and I look forward to hearing the Minister’s views. I hope that these children will be brought into the fold and given greater consideration.