Children and Families Bill

Lord Patel Excerpts

Wednesday 23rd October 2013 Grand Committee

[Baroness Howarth of Breckland]

My Lords, I will be brief—I am sure that the Minister will be grateful for that—but I want to say two things at the beginning. First, the Minister needs to know that many organisations think that a great deal in the Bill is extremely welcome. The tone of the debate seems critical. I think that we have the number of amendments that we have simply because people care about the issue and have discussed it at length. I have met several organisations which have said how valuable a great deal of what is in the Bill is taking forward work with disabled children. I thought that we needed to have that on record while we are all complaining bitterly about the things that the Government have not done.

I shall speak to Amendment 220. Most of the points have been made, and I will not make a long, heartfelt tirade about the group that I care about. I just say that I work closely with children with congenital heart disease, children born with half a heart, many of them with hypoplastic left heart syndrome. They usually look like perfectly ordinary children but they are in serious difficulty when they get to school. I am therefore immensely grateful to see the Minister’s amendment but I ask that we see the regulations, because the devil will be in the detail as to whether it really meets the requirements. If we can see the regulations early, it might relieve the pain on Report, when people will otherwise want to speak at length again.

My other question is: once we have the regulation and the detail, how will families be able to complain without taking themselves through massive tribunal cases, as we know has happened? It might be worth the Government looking at how parents raise issues under the regulations when they feel that their needs have not been met, because that would save everybody pain. It is no use saying to ourselves that Ofsted will deal with that, because we know that it visits only every four years. Some children have been right through school and never seen an Ofsted inspection. If we could have some clarity on that, it would certainly speed things up.

[Lord Patel (CB)]

My Lords, I speak in support of Amendment 223, to which my name is attached. I will be brief, because most of what I would have said has already been said well by the noble Lord, Lord Kennedy of Southwark.

I particularly support the emphasis that he put on the need for teachers to have the right training to deal with children with medical conditions. Without that training, it is likely that any guidance issued will be completely defunct. The NHS, local authorities and schools need to work co-operatively to ensure that training is provided and accessible to teachers.

I welcome the government amendment most sincerely. I am glad that the Minister has tabled it at this stage. My only problem is that, without seeing the draft guidance, we have no way to comment on whether its breadth and depth will be adequate to meet the needs of children with medical conditions. I therefore hope that the Minister can make a commitment to bring forward the draft guidance before Report, so that we can improve it—not criticise it, but help to improve it.

I also want to ensure the inclusion of medical conditions not already mentioned—the list is exhaustive— such as diabetes, epilepsy, asthma and allergies, but also cancers. It is often thought that children with cancers have short lives. Some, unfortunately, do, but most childhood cancers are now long-term conditions and should be treated more as chronic diseases, not short-term ones. I hope that the Minister will include dealing with cancers in the guidance.

The guidance must recognise both the social and emotional needs of young people with long-term medical conditions, and the fact that a health condition can impact on a child or young person’s ability to learn. Another important point made by the noble Lord, Lord Kennedy of Southwark, was the need to involve the parents and children to ensure that the school understands their condition and its emergency needs. A child having a hypoglycaemic attack requires immediate treatment. A child having an allergic attack requires immediate treatment. A child with a migraine needs to be treated with compassion, because they may lose their vision and hearing. Putting them in a corner or a quiet room does not solve the problem. Those are some of the things that children with a medical condition suffer on a daily basis in schools. If we cannot get things right for children in the Bill, we fail them.

[Baroness Brinton (LD)]

My Lords, with the permission of the Grand Committee, I would like to speak sitting down. I have added my name to Amendments 67 and 68, and I will not repeat the points that my noble friend Lord Storey has already covered, although I completely agree with them.

I, too, want to focus on children with medical conditions. We have had a lot of information, but I have met three or four children with differing conditions. The problem is when schools do not recognise a medical condition. A young man aged 18 with ME had a statement, but it was for his behaviour, not for his medical condition. Even after the consultant wrote to the school, the school refused to believe that the condition existed. A girl with a congenital heart condition was taking an exam. The invigilator had not been informed about the technical equipment she had to wear, and she was pulled out of the exam. Cancer has already been mentioned. There have certainly been some serious educational support issues. I met one young lady who, in the year she had off from formal schooling, had one supportive teacher who kept in touch academically and socially. None of the others did. Home tuition via the local authority was extremely patchy and had not linked up with the school, and nor had the hospital school. As a result, the year was, in her phrase, “entirely haphazard”.

Children and Families Bill

Lord Patel Excerpts

Tuesday 2nd July 2013 Lords Chamber

[Lord Patel]

My Lords, I wish to speak about Part 3, which is mainly concerned with the reform of special educational needs and disability.

I commend the Government for recognising that the system with which families have to contend to secure the right services for their children is adversarial and in need of improvement. The many, many charities and organisations—such as Together for Short Lives; CLIC Sargent, a charity that deals with children with cancer; Scope; the National Deaf Children’s Society; charities related to children with autism; and many others—have highlighted through the evidence that they have gathered that the disjointed system of care presents many challenges for the families of children with life-limiting conditions.

There are nearly 39,000 children and young people with life-limiting and life-threatening conditions. Up to 1,600 children aged up to 15 and 2,000 aged between 16 and 24 are diagnosed with cancer each year. Nine out of 10 of these children feel that their diagnosis and treatment make a difference to their school lives. Many others have other serious and life-threatening conditions. Children who have different needs and require complex, individualised health interventions also need additional social care and educational support. The families of these children routinely deal with more than 30 professionals, from education, social care, health and other services. Communication between agencies is generally inadequate, adding further stress to families and children. While this is stressful for families of children with disabilities and long-term conditions, for families whose children’s lives are likely to be short it is particularly distressing. One parent said:

“It’s a minefield and you get frightened going through it. Services don’t join up and people don’t explain things to you. They don’t tell you what all the services actually do. By the time I had made it all fit together my child had passed away—that makes me sad that he could have had so much more out of life”.

Evidence shows that for these children the best outcome is achieved when there is an effective partnership between parents and services and care is co-ordinated around the needs of the child. I felt the Government had got it right when they proposed integrated health, education and social care assessment plans, improving joint commissioning between local agencies. Alas, the Bill was changed and I concur with the comments of the noble Baroness, Lady Hughes of Stretford. The Government have withdrawn to a position in the Bill whereby only children who have special educational needs will be able to benefit from these reforms. Why did the Government change their mind?

Many children with complex health conditions, including cancer, cystic fibrosis and many other diseases mentioned by other noble Lords would benefit from a single education, health and care plan—the so-called EHC plan—but would not meet the requirements for a SEN statement. It cannot have been the Government’s intention to exclude these children. It also flies against the recommendation made by the Education Select Committee in the other place and the Government’s stated aim to remove the graduated approach to SEN. Up to a quarter of disabled children do not have a SEN statement. What plans do the Government have to integrate assessment and services for this group of children?

Clause 30 requires a local authority to produce information on education, health and care services “it expects” to be available locally, known as the “local offer”. This has the potential to speed up access to services and to increase confidence in the system. The added provision to assist children transitioning from childhood to adulthood is to be welcomed. However, Clause 30, which deals with this, is not strong enough to ensure that the benefits of the new local offer will be realised, as other noble Lords have commented. First, a local authority will have to set out only the provision “it expects” to be available in the local offer. That wording is not strong enough to provide redress for parents or young people if those services are not available. Secondly, there is too much scope for variation between local areas in services that will be specified. Clause 30 would be strengthened by a legal duty to provide what is set out in the local offer, which would enable parents and young people to challenge local authorities. I hope the Minister is sympathetic to that, as the feeling is quite strong that such a duty should be in the Bill.

Also required in the Bill is a common framework to inform the development of each local offer. I am concerned, too, that the Bill’s focus on education means that a once-in-a-generation opportunity to join up services for all disabled children and young people, particularly around the transition from children’s to adult services, is being lost. Young people between the ages of 18 and 25 who may move in and out of education or leave education altogether will not have access to a single EHC plan and will lose access to support. This will include many young people who need palliative care who, owing to the complexity of their conditions, do not continue in education. This Bill, in addition to the Care Bill, which we continue to debate in Committee, will bring about two different systems for young disabled people who transit from children’s to adult services in England, depending on their educational status.

The Bill provides an opportunity to ensure that young people with complex conditions, or diseases such as cancer, up to the age of 25 continue to have access to an EHC plan, regardless of their educational circumstances. I hope that the Government feel sympathetic to this and that they take this opportunity to ensure that it happens. I look forward to the Minister’s response.