My Lords, I am most grateful to my noble friend Lord Patel for the way in which he has introduced our amendments. I greatly welcome the Government’s amendments in this area of transition. The reason that our amendments are written as they are is because this group of children are different to adults who are terminally ill. They have life-limiting conditions, but their prognosis may be years. However, during that time they know that they will deteriorate, as do their parents. We are therefore looking at completely different timeframes, and with completely unpredictable prognoses, except for the likelihood that they will live through into adulthood. Some of them, of course, live surprisingly long periods of time and may live several decades into adulthood. They tend to have the inherited disorders of metabolism. They are a different cohort from those who have terminal illnesses such as cancer. There are also those children who, for example, have had very severe sudden injuries, such as a severe head injury, and then develop epilepsy, which can then become so severe that it is life threatening. Many of the children also have learning difficulties and educational needs.
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Our amendments, I hope, will create the triangulation that is required between health, education, and social care in the context of this Bill so that many of the young people can carry on having their educational needs provided for. This group of young people often describes leaving paediatric care and entering adult care as “falling off a cliff”. They feel that they are going into an enormous chasm. They have been under the care of one service in paediatrics, but there is not a neat fit for adult services with the different specialities. That creates a major difficulty for them. That is why we feel that the assessments have to happen early. It is important for the young person to develop confidence in the assessment process in order to disclose what their needs are and to develop confidence in those doing the assessment.
The other reason that it is important to do it early is for the sake of the parents. These parents are getting older. They know that their lives may not carry on. They may well be outlived by their child. That is an enormous worry to many of them. Often the families have already split apart; many marriages break up with the strain that caring for some of these young people has imposed. The remaining parent really needs to know that the plans are in place and will be maintained. The reason for continuing to 25 is precisely that. Most educational services for these children stop at 21. It is very unusual for them to have anywhere to go after that. They have housing needs and care needs. However much one hopes that they may live independently, not all of them achieve that.
Placing them for care can be very complex. A young person with all the needs of a young person and all the emotional needs and sexual-development needs does not want to be placed in an institution which is full of people over 85, some of whom have got dementia,
where the staff are not comfortable even discussing with them some of their more intimate needs and desires. These young people want to discuss contraception; they want to discuss sexual experience; they may want to drink alcohol. In an older person’s environment, that is not always the atmosphere. As the parents get older, they know that the physical strain of providing care is becoming too great, and they will not be able to do it anymore. That is why we feel strongly that the government amendments are fantastic, as far as they go, but having an extension with clear timelines to make sure that this is a gentle process is particularly important. I hope that the Minister might have some words of comfort for us, if it is not to accept the amendment but certainly within regulational guidance later, that this period of transition will be looked at because it is so difficult for both the young people and for their parents or carers.