Ahead of his Westminster Hall debate on support for children with life-limiting and life-threatening conditions and their families on Tuesday 29 January, Jim Shannon MP explains why it is vital that the government takes action now.
Children with life-limiting and life-threatening conditions are among the most vulnerable in our society. Their families strive to meet their complex health needs 24 hours a day, seven days a week, supported by a network of palliative care services in hospital, children’s hospices and the community. The government recognises this, and the new NHS Long Term Plan is clear that children’s palliative care is a priority. But a recent cross-party inquiry has found that the palliative care children and families can access is patchy and depends on where they live. Ministers must now increase money available for these services, boost the workforce and hold the NHS and local councils to account for the way they plan and fund this lifeline care.
Like many MPs, I have met people facing the tragedy that their child is likely to die before they reach adulthood. Children with life-limiting and life-threatening conditions are few in number. But their needs are often incredibly complex. As a society, there is much we can do to help them make the most of the short time they have – and to help their families both before and after their child has died.
Seriously ill children do not have time to wait, and I urge ministers to implement the APPG’s recommendations now.Jim Shannon MP
Palliative care for children is usually provided by their parents, at home, supported by hospital, children’s hospice and community services. Parents usually get little sleep as they provide care throughout the day and night, administering medicines and feeds, juggling appointments, caring for their other children and holding down jobs. This can put their physical and mental health – and their relationships – at risk. Families need regular breaks provided by services like Northern Ireland Children’s Hospice, which serves my constituents, to enable them to switch off, safe in the knowledge that their child is receiving the specialist care they need. When the end of a child’s life comes, families need round the clock care, including bereavement support, to help them come to terms with their tragic loss. The long-term impact on siblings can be significant.
Encouragingly, the four UK governments have all recognised the impact that life-limiting conditions have on children and families. In 2016, the Department of Health in Northern Ireland published ‘Providing High Quality Palliative Care for Our Children: A Strategy for Children’s Palliative and end-of-life care 2016-26’. In England, there is a clear commitment from the Department of Health and Social Care to give children and families access to the palliative care they need – and to provide choice about how and where they receive it.
However, a recent inquiry by the All-Party Parliamentary Group (APPG) for Children Who Need Palliative Care, of which I am Vice-Chair, has highlighted limited access in England to:
- children’s palliative care out of hours and at weekends
- short breaks (respite)
- age-appropriate palliative care and smooth transitions to adult services
- specialist children’s palliative care teams led by senior (Level 4) consultants
- advance care planning, as part which children and families can express their choices about how and where they receive their care.
Government policy has a pivotal role in overcoming these issues, and the APPG has identified five areas where there are opportunities for ministers and officials to take action now. First, it is hugely disappointing that almost half (46%) of NHS clinical commissioning groups (CCGs) in England are failing to implement the government’s end of life care choice commitment and have no plans to do so. It is vital that the government lead and hold local areas to account for the way in which they are planning and funding (commissioning) children’s palliative care in a way which is consistent with their commitment.
Second, ministers should write jointly to local NHS organisations and local authorities to clarify which parts of the health and care system in England are responsible for commissioning palliative care for children. This is particularly vital to make clear who should be planning and funding short breaks and specialist children’s palliative care.
Third, it is very worrying that the overall amount of statutory funding that charities providing children’s palliative care in England, including children’s hospices, has fallen to 22% in 2016/17 compared to 27% in 2013/14. Adult hospices receive 33%. I was very pleased to welcome NHS England’s recent announcement on children’s palliative care funding in the Long Term Plan. However, I am disappointed that there is no guarantee on children’s hospice funding within the announcement, and I urge minsters to commit to protecting and increasing NHS England funding for these vital services. Children’s social care funding must also be prioritised in the Spending Review.
The fourth area is workforce: there are too few professionals with the skills, knowledge and experience needed to provide children’s palliative care in hospitals, children’s hospices and in the community. Ministers must set out the steps they are taking to address this important issue in the forthcoming NHS workforce implementation plan. The fifth and final area is integration: to make sure that care is as joined up as possible, I urge the government to make sure that all 40,000 children in England with life-limiting or life-threatening conditions have the right to an integrated assessment, plan and personal budget.
I am greatly encouraged by the policy progress being made across the UK for children with life-limiting conditions. But there is much more that we need to do, and quickly. Seriously ill children do not have time to wait, and I urge ministers to implement the APPG’s recommendations now.
Jim Shannon is MP for Strangford and the DUP’s Health Spokesperson. He is also Vice-Chair of the APPG for Children Who Need Palliative Care.