Health and Social Care Bill

I put my name to these amendments, which are incredibly important. I hope that the Government’s response will be that they are listening and prepared to change this. It is worth noting that the Government’s response to Professor Sir Ian Kennedy’s report said: "““In the past, the NHS was not always set up to put the needs of patients and the public first. Too often patients were expected to fit around services rather than services around patients. Nowhere was this more the case than for children, young people and their families … If we are to meet the needs of children, young people, families and carers, it is vital that we listen to them in designing services, gather information on their experiences and priorities, provide them with the accessible information that they need to make choices about their care, and involve them in decision making””." That is the Government’s own response to the report. I also draw attention to the report from the ombudsman in Wales. I know we are going to debate ombudsmen later but I will make this one point. The ombudsman upheld a complaint that Health Inspection Wales, "““failed to seek the child’s perspective on her care””." The Royal College of Paediatrics and Child Health is very concerned that ““no decision about me without me”” must extend to children and should involve both children and young people. Without that we will have poorer service planning and, as a result of that, poorer health outcomes. A voice for children and young people needs to be incorporated in the decision-making process of the NHS Commissioning Board, health and well-being boards and clinical commissioning groups, and a safe conduit for this involvement may be HealthWatch and local healthwatch. I want to briefly draw the House’s attention to the fact that we have many young carers so it is not only children as patients that we need to consider. In the 2001 census it was found that there were 175,000 young carers and no one is disputing that those numbers have gone up significantly since then. A third of those are caring for somebody with mental health problems and the average age of young carers is 12 years old. Reading their comments, society clearly does not understand the pressures that they are under. There is evidence that when they get to school late, the school does not understand. When they try to accompany their parent to out-patient or even in-patient appointments, they are not listened to even though they have been providing all the care. The facilities where their relative is looked after are not appropriate for them to stay overnight. I remind the Committee that when a young parent is dying, the children will want to stay at the bedside. They may want to sleep in the same room. They do not want to be taken away. They may want to have a break; they may want to go out; they may want to watch a video. If we are really going to invest in quality of care and health outcomes for the next generation, and meet the Marmot review’s requirement for health inequalities not to be widened but narrowed, we must address the needs of this group in our population who provide a lot of care, who are incredibly important and who will be the citizens of the future, but to whom the system does not currently give a voice. To expect adults to be a voice for them is completely unrealistic, because, when they are a young carer, there is no other adult there apart from the person whom they are caring for. I hope that these amendments will not be dismissed with a whole lot of reasons as to why they cannot be put into practice. If we are really committed to changing healthcare services for the population, we should listen to the voice of children and young people.