Care Bill [Lords]

Stuart Andrew Excerpts

Monday 16th December 2013 Commons Chamber

[Stuart Andrew (Pudsey) (Con)]

It is a pleasure to follow the hon. Member for Blaenau Gwent (Nick Smith), who raised a number of serious issues.

Some wide-ranging speeches have been made today, but I shall make a short speech, which will primarily concern the clauses in the Bill that relate to young people and their transition to adult social services. I have spoken on a number of occasions about my experience of working in the hospice movement, particularly the children’s hospice movement, over the last 20 years or so. During that time, I saw some incredible work done by the staff at the hospices, but, more important, I observed the tremendous dedication of the parents and families of the children who worked day and night to ensure that they were given the very best care.

When I joined the last hospice where I worked—Martin House, which at that time served most of Yorkshire—the construction of its new building, Whitby Lodge, had just been completed. The trustees of the charity had identified a real need, the need to look after those who could be described as the “older younger people”. As time has passed, many young people in hospices have been living longer. That is a good thing, but the theme in the children’s hospice became a little bit childish for those who were entering their teens.

In England, more than 40,000 children and young people aged between 0 and 19 currently have long-term health conditions that will eventually end most of their lives, and for which they may require palliative care. Owing to medical advances, more young people with a range of conditions are living into adulthood than ever before. The number has increased by some 30% over 10 years, and the highest rate of increase is among those aged between 16 and 19, who now account for some 4,000—or one in 10—of those aged between 0 and 19 who need palliative care.

When I worked at Hope House children’s hospice in Oswestry, some of the young boys who suffered from Duchenne muscular dystrophy would be lucky to live beyond the age of 18. When I left Martin House, many were living into their late twenties. That is a great thing, of course, but it does mean that we must think about how we can help such young people. The majority of those who may require palliative care have a range of severe disabilities and complex health needs. Contrary to popular belief, cancer represents just under 14% of diagnoses; most of those young people have cognitive impairments, which means that that they lack capacity, and many are cared for over long periods by their parent carers.

Many young people with life-limiting or life-threatening conditions who are more cognitively able struggle to achieve independence and enter education or employment, because plans are not made for them. Those who are unlikely to be cured by treatment are offered palliative care. Palliative care for young people is not simply end-of-life care, but focuses on enhancing the quality of their lives. In their early to mid-teens, young people receive palliative care and other support from children’s services. In their later teens, they start to receive services from adult agencies which assume responsibility at different points after their 16th birthdays. The transition is often complex, and traumatic for families who are already coping with extremely difficult circumstances.

A successful transition needs to address both the transfer of responsibility for young people from children’s to existing adults’ social care, health and education services, and the development of new adult services that are tailored to young people’s additional needs. The transition needs to be planned for years in advance, but, at present, planning is often disjointed and poor. The reduced services and support routinely offered by adult agencies, which are often focused on older people and end-of-life care, come as a distressing shock to many young people and their families. Parents have described the transition as like “standing on the edge of a cliff, about to fall into a black hole”. Poor transitions lead to increased illness, adverse social and educational outcomes, and sometimes even premature death.

Let me ask the Minister some specific questions. Will the statutory guidance on the Bill’s transition clauses which the Department of Health is producing for local authorities ensure that when a child who needs services reaches the age of 14—and is likely to continue to need services as an adult—the local authority initiates advance planning of the care needs that that child will have as an adult? Will it ensure that, from the age of 14 and by the age of 16, every young person who needs services has a five-year rolling transition plan in place, which specifies when his or her needs assessment is likely to take place? Will it ensure that when a child who needs social care reaches the age of 14, the local authority initiates advance planning of the carer’s needs when the child reaches the age of 18? Finally, will it ensure that the full range of services that young people with life-threatening and life-limiting conditions will require as adults—including local authority housing services to help them to live independently—are involved in the transition planning process?

As I have said, it has been my privilege for many years to work with so many inspiring young people and their families. In the hospices where I have worked, I have seen the staff do incredibly hard and great work. They do a tremendous job in trying to help families through the minefield of the care system. I think that the Bill offers us a real opportunity to make things just a little easier for families who are looking after children and young people with life-limiting conditions.