Hospices (Children and Young People)

Luciana Berger Excerpts

Wednesday 18th December 2013 Westminster Hall

[Luciana Berger (Liverpool, Wavertree) (Lab/Co-op)]

I begin by congratulating the hon. Member for Pudsey (Stuart Andrew) on securing this debate on a topic about which he is clearly passionate. I pay tribute to him and to all the members of the all-party parliamentary group on hospice and palliative care for the work that they have done to bring this important issue to the fore.

As we have heard, there are 49 children’s hospices across the UK, which all do fantastic work for young people and their loved ones. As my right hon. Friend the Member for Rother Valley (Mr Barron) said, much of the hospice movement is supported by volunteers and millions of pounds of charitable donations. Many hon. Members from both sides of the House made passionate representations on behalf of their local hospices and the holistic care that they provide. Hon. Members have raised many powerful points, and I hope to touch on several of them. I want to focus on three points covered in the debate. First, I will set out the full scale of the care crisis facing young people with complex health and care needs; secondly, I will explain why that is an issue not simply for individual families but for society at large; and thirdly, I will touch on some of the areas that need attention to make life better for those young people, particularly those receiving palliative care.

As we have heard, more than 40,000 children and young people in England have palliative care needs. That includes children suffering from curable and chronic conditions, children with severe disabilities, and children and young people nearing the end of their life. That represents a 30% jump over the past 10 years. There has been a particularly marked increase in the number of 16 to 19-year-olds requiring palliative care, as we have heard from several hon. Members, to around 4,000 young people, which accounts for roughly 10% of young people under the age of 19 with complex care needs. That is in many ways a positive sign, because it demonstrates the great advances made in science and medical technology, and the fact that they have resulted in people living longer.

Cancer accounts for around 14% of young people diagnosed. Cancer Research UK figures show that five-year survival rates for teenagers and young adults have risen significantly across all cancers across the past 25 years. In the late 1980s, less than three quarters of young men lived longer than five years after having cancer, but the rate is now better than eight in 10. For girls and young women, the five-year survival rate now stands at 84%. There has been a particular improvement in leukaemia; the survival rate has jumped from less than 50% to more than 60%.

We are moving in the right direction, but as we have heard from hon. Members today, that presents a particular challenge, because more young people live beyond the reach of children’s care and transition into social care. Too many young people who receive care from children’s services turn 16, 17 or 18 and then fall off a cliff during the transition to adult social and health care. The right hon. Member for Chelmsford (Mr Burns) and the hon. Member for Pudsey highlighted the specific challenges facing young adults, and we heard an emotive quote from Lucy Watts, who summed up the situation well. Much more needs to be done to make the transition work better. Some of my constituents who have accessed wonderful services at the Alder Hey children’s hospital struggle when the health professionals and familiar surroundings that they have been accustomed to for so long change—a point that my hon. Friend the Member for Rotherham (Sarah Champion) articulated. Many families are shocked by the reduced support that they receive in many aspects of adult social care after they have made that switch.

Transition is a hugely stressful process, and in most cases families are moving from dealing with a single, comprehensive agency to managing several different agencies with up to four points of contact. It is easy for gaps to emerge in that fragmented process. Many conditions reach crisis point in late adolescence, so it is all the more important that young people and their families receive responses from care and health agencies in an appropriate, sensitive and timely fashion. There are too many instances of people having to endure the agony of being put on hold, or waiting for a reply to an e-mail, when their loved one has an urgent care need.

That is all in the context of a crisis in adult social care. Since 2010, £1.8 billion has been cut from council budgets for adult social care, and we await the impact of the local authority settlements which have been released today. That means that fewer people receive help with paying for their care and more people face increased charges for vital services that help them to get up and get washed, dressed, fed and helped to bed at the end of the day.

Let me make a brief comment on the wider costs to society. Demand for care is growing at a time when resources are being reduced. The costs to society of a bad care transition—whether those costs take the form of greater illness, negative social and educational outcomes, or possible early death—are far greater than the cost of putting in place adequate resources to ensure a good transition. I welcome some of the modest measures that the Government—[Interruption.]

[Sandra Osborne (in the Chair)]

Order. The sitting is suspended for a Division for a minimum of 10 minutes.

--- Later in debate ---

On resuming—

[Luciana Berger]

Before the Division, I was sharing with the House my welcome for some of the modest measures the Government put forward in the Care Bill, which the House debated on Monday. It represents a small step towards a better social care system, and builds on the Labour Government’s work to provide stronger rights for carers and improved access to information and advice.

Let me conclude by looking at some areas that still require attention, and with a few questions for the Minister. I praise the many charities working in the sector, particularly Marie Curie Cancer Care, which has a hospice not too far from my constituency, and Together for Short Lives, the leading UK charity for children with life-threatening and life-limiting conditions. Their joint “Don’t let me down” report, published last year, set out sensible and important proposals, a number of which the Government adopted, but four areas of concern remain.

First, we need a much more joined-up approach to commissioning health and social care services for children with palliative care needs. Currently, we have a split: NHS England commissions specialist care, and local authorities manage social care. That fragmentation means that the very high variation in access to and quality of services, depending on where people live, will continue. I would be grateful if the Minister told us the Government’s assessment of that postcode lottery, and what they are doing to address the disparity.

Secondly, children and young people need to be consulted, so that their care caters for them and their needs. There is a particular role for health and wellbeing boards in that. More than half the health and wellbeing boards have explicitly examined care for terminally ill adults, according to the National Council for Palliative Care. The likelihood, however, is that far fewer will have engaged with children and young people on the same scale. I would welcome a response from the Minister on that specific point. Thirdly, the different agencies that provide hospice and palliative care to children and young people need to talk to one another much more. Local authorities are unable to share data. What solutions are Government considering to address that problem? Fourthly, a solution needs to be found to enable all the information and records about a young person’s needs to travel with them. Too many young people have to tell their story all over again when they need to access a new service, or when they are transitioning.

The debate this afternoon has been positive and constructive. On this side of the House, we are ready to work with the Government to improve outcomes for young people and children who need hospice and palliative care. We hope to deliver an integrated, whole-person approach to health and social care. Whole-person care is about meeting the needs, whether physical, mental or social, of people of all ages, so that they are able to live an independent and dignified life. That is ultimately what the future of health and social care needs to look like, with world-class hospice and palliative care front and centre. That is what we are committed to delivering, so that we can help those who need it most.