Children with Life-limiting Conditions

Catherine McKinnell Excerpts

Tuesday 29th January 2019 Westminster Hall

[Catherine McKinnell (Newcastle upon Tyne North) (Lab)]

I am delighted that the hon. Member for Strangford (Jim Shannon) secured this debate on an issue that is so important for so many children and families across the country. It goes to the very heart of the work done by the APPG for children who need palliative care, of which I am vice-chair, alongside the chair, the hon. Member for Sleaford and North Hykeham (Dr Johnson).

Babies, children and young people with life-limiting and life-threatening conditions rely on a range of social care services provided by a variety of statutory and voluntary organisations such as short breaks, practical assistance at home, home adaptations and support to access travel and leisure activities. A good example of one such provider, which celebrated its 15th birthday this year, is St Oswald’s Hospice in Newcastle. It provides residential short breaks and care to babies, children and young adults. Up to six children and young adults can stay at St Oswald’s at any one time, in a beautiful, relaxed, home-from-home environment. Indeed, one mother said about the hospice:

“Having respite at St Oswald’s for a couple of nights a month helped to give me a break. While I was doing all the medical care for my son, I couldn’t be a mum. Being at St Oswald’s gave me time to step back and just enjoy playing with him and having fun.”

Seriously ill children and their families across the country need short breaks and the respite provided by skilled, highly trusted people who can meet the child’s often complex health needs. It might only be for a few hours, or overnight for a few days at a time, but those short breaks are vital to help parents and siblings manage the immense stress and 24/7 pressure that a child with a life-limiting condition can bring. The evidence suggests that such respite care helps to support children and their family’s physical and mental health, and mitigates the risk of parental relationships breaking down.

Local authorities of course have a legal duty to provide short breaks for disabled children and their families, to be planned and funded jointly by local councils and the NHS. A Government-commissioned review of funding arrangements for palliative care made it clear in 2011 that that duty must include respite care for the carers and families of children requiring palliative care. Despite that, however, the charity Together for Short Lives found that too many CCGs and local authorities in England fail to plan and fund short breaks. More than one in five local authorities do not commission short breaks for children with life-limiting and life-threatening conditions, despite having a legal duty to do so, although 84% of CCGs reported that they commission short breaks for children who need palliative care.

Furthermore, the Disabled Children’s Partnership, of which Together for Short Lives is a member, has gathered increasing evidence of cuts to services for disabled children. Is it any wonder that that is taking place? The Local Government Association estimated that children’s services face a £3.1 billion funding gap by 2025, just to maintain existing levels of service. Given such findings, I shall be grateful if the Minister confirms in her response how she holds sustainability and transformation partnerships, integrated care systems, CCGs and local authorities to account for the way in which they plan and fund short breaks.

I am also keen to highlight the importance of the provision of short breaks to all families who receive them, not only those families with children who need palliative care, but those with disabled children whose conditions can be life-limiting as well. I was able to witness that on Friday, when I visited the excellent Alan Shearer Centre in Lemington in my constituency. It provides specialist respite services in a specially adapted environment. One of the key concerns expressed to me at the centre was about how the level of respite care support that disabled children and their families receive can be halved when a person’s condition has not changed at all—the only thing that has changed is their age. Many families described that as feeling as if the rug has been pulled from under their feet.

I also want to highlight the work of the Rainbow Trust, which provides vital support at home for so many families, including in Newcastle. Will it be possible for the recently announced funding of £25 million for palliative and end-of-life care to be used to provide that emotional and life-affirming support for such families? Children with life-limiting and life-threatening conditions face enough challenges without the added stress of not having the support they need.

--- Later in debate ---

[Caroline Dinenage]

Absolutely. The meeting probably would not be with me, because the issue does not fall under my portfolio, but it is really important that the hon. Lady meets the relevant Minister.

The debate has been very broad, and a lot of questions were asked. I will attempt to answer as many as I can, but I commit to writing to hon. Members with all the answers they asked for if I miss any out. Whenever we discuss this issue, we must keep at the back of our minds the powerful point made by the hon. Member for East Kilbride, Strathaven and Lesmahagow (Dr Cameron), despite her throat issues, that at a time of their lives when they are dealing with unimaginable stress and grief, parents should not have to fight for what they need to best care for their children.

The hon. Member for Swansea East (Carolyn Harris) painted a picture of how the world ends when you lose a child. I cannot even begin to imagine that, but it must feel the same to be told that your child may die at a young age. That must, quite simply, be devastating. As the hon. Member for Strangford said, almost 40,000 children and young people aged 19 or under in England live with a life-limiting condition and may need palliative care. Of those, around 1,000 die every year.

As outlined in the NHS long-term plan, we know that children’s palliative and end of life care have not kept pace with the growth in clinical care costs or with inflation. NHS England’s hospice grant programme provides £11 million a year for children’s hospices, which are incredibly valuable. I have spoken before—probably in this room—about my great passion for children’s hospices. That comes from my mum who helped raise money to build Naomi House children’s hospice just outside Winchester, and throughout my twenties she made the whole family partake in a range of humiliating fundraising exercises to raise money for that. I went to visit Naomi House again last year, many years later, and I saw at first hand the incredible, valuable services that it offers, not just for end of life care, but because of its respite and outreach work, which is a lifeline for so many families.

Hon. Members will know the invaluable services offered by children’s hospices, and I was pleased that in the long-term plan additional funding has been made available each year for children’s palliative and end of life care services. I understand the confusion about the different amounts that have been mentioned and issues around that, and Department officials are currently working with NHS England to clarify those numbers and what they mean. I am clear that funding for children’s hospices is vital. We must ensure they get the money they need, and that money must increase from its current levels.

As the hon. Member for Strangford pointed out, there is regional variation in how palliative care is delivered. I know that such care is exceptional in some parts of the country, and many staff up and down the country go above and beyond to ensure that experiences for children with life-limiting conditions, and those at the end of their life, are as good as they can be. We know, however, that there are areas where we need to do considerably more, and NHS England is firmly focused on providing support and challenge to achieve that. Choice at the end of life is a centrepiece of the Government’s drive to improve end of life care, and for choice to be meaningful it needs to be personalised and matched by healthcare services that respond in an effective way that places patients, families and carers at the heart of decision making. We know when we achieve that that we have got it right, but also that we have a long way to go. I pay tribute to the all-party group for children who need palliative care, and charities such as Together for Short Lives, and the work they are doing to take that crusade forward.

[Catherine McKinnell]

I appreciate the commitment made by the Minister that her officials will clarify those figures. Will she also commit to ensuring that children’s hospices do not receive less money as a result of the long-term plan? Can she make that reassuring commitment to everybody watching the debate today?

[Caroline Dinenage]

I know that we are planning to meet next month to discuss this issue in more detail, but my understanding from the announcement in the long-term plan is that there will be an increase in funding for children’s hospices. I would not support a move towards anything other than that, so we are certainly in agreement about the value that children’s hospices offer up and down our country.

In July 2016, “Our commitment to you for end of life care” set out what everyone should expect from care at the end of life, and the actions being taken to make high-quality personalised care a reality for all. NHS England is responsible for delivering that commitment in partnership with key stakeholders through its national end of life care programme board. The hon. Member for Strangford mentioned ensuring that sustainability and transformation partnerships and integrated care systems deliver care in a way that supports their local population. NHS England is already working with Public Health England and the Care Quality Commission to provide bespoke end of life care data and support packs to STP and ICS areas, to help plan for and improve end of life services.

NHS England is developing a new indicator for clinical commissioning groups to measure deaths in hospital after three or more emergency admissions in the final 90 days of life. That sounds like a technical piece of data to collect, but such vital information will help us to understand exactly what care is being delivered, and ensure that we spread best practice and identify areas for improvement.

The hon. Gentleman rightly highlighted the crucial role that leadership and accountability play in commissioning those vital services, and NHS England has and is seeking to improve support for commissioners when funding and delivering children’s end of life care. In April 2017 it made available a new specialist palliative care currency—one for adults and one for children—to support local areas in planning and delivering services, including hospice services. The currency can help local services better understand complexity of care and the investment needed to deliver it. It can be difficult for some commissioners to develop suitable models to meet children’s needs, given that in some geographical areas relatively small numbers are involved. That is why NHS England has established an expert group, which includes Together for Short Lives, to bring together knowledge and expertise in children’s end of life care, consider developing models that are suitable for that incredibly vulnerable group of patients, and set up pilot models of care that will be implemented later this year.

A number of hon. Members mentioned short break services, and access to respite and short breaks is fundamental for many families and carers. Local authorities have a legal duty to commission short breaks, and although the NHS’s role is not statutory but a matter for local commissioners, it may also provide clinical support. Having the reassurance of clinical oversight can often mean the difference between carers taking those much-needed breaks and feeling unable to do so, and it is important that such work is collaborative. A recent report from Together for Short Lives found that 84% of clinical commissioning groups said that they commission short breaks for children who need palliative care—an increase from 77% in 2018. We want to ensure that 100% of clinical commissioning groups make such a contribution so that carers have access to the breaks they need. NHS England provides bespoke data and commissioning support to STP and ICS areas to enable them to plan and deliver effective services, such as short breaks, for children and young people.

Access to and quality of palliative and end of life care goes beyond funding for hospices, and through the long-term plan we are accelerating the roll-out of personal health budgets to give people greater control and choice. We want 200,000 people to benefit from a personal health budget by 2023-24, and that will include things such as provision of bespoke wheelchairs and community-based packages for personal and domestic support. NHS England is expanding the offer of mental health services to people receiving social care support and those receiving specialist or end of life care.