Contribution
It is a pleasure to serve under your chairmanship, Mr Twigg. I thank my hon. Friend the Member for Liverpool West Derby (Ian Byrne) for securing this vital debate. I know that this sector—this community—is very close to his heart. I thank him for all his work to support it and raise awareness of the issue generally, and in particular for the heroic work he has been doing for Zoe’s Place. I know Zoe’s Place faces an uncertain future, but I also know that my hon. Friend is spearheading its fundraising campaign and has been part of the discussions with its trustees and builders about securing a new site for the hospice to ensure it has a long-term future. I am very much aware of the work that the Liverpool-based Home Bargains is doing, particularly in pledging an incredible £2.5 million towards the campaign. I wish my hon. Friend and the hospice every success in those vital endeavours, and I pay tribute to Home Bargains for its outstanding community spirit.
I thank the many hon. Members who have attended this important debate and contributed so powerfully to it. We have heard some really excellent contributions. Hon. Members have shown how important this issue is to the House. I thank all the people who work in children’s palliative and end of life care, including in hospices throughout the country, which provide vital care and support to those who need it.
We all recognise the importance of palliative and end of life care services, including hospices, which provide personalised care and support at the most difficult times for children and young people with complex needs, and their families and carers. It is estimated that there are more than 86,000 children and young people with life-limiting conditions in the UK, but it is predicted that, as we continue to make medical advances, that number will increase.
Palliative and end of life care for children with life-limiting conditions is provided by a broad range of organisations and professionals across multiple settings, including primary care, community care, hospitals, hospices, educational settings and children’s own homes. This system-wide approach to providing palliative and end of life care should be sufficient to ensure that the local offer to patients is personalised, of high quality and sustainable. The majority of palliative and end of life care is provided by NHS staff and services, but we recognise the essential part that voluntary sector organisations, including hospices, play in providing support to people at the end of life and their loved ones.
Children’s hospices are a vital part of that system-wide approach, because they provide a wide range of health and care support to meet the physical, emotional, social and, indeed, spiritual needs of children, young people and their loved ones. Care is often provided by a multi-disciplinary team, and often in collaboration with statutory services, to ensure that the entire family is supported.
The support provided by hospices can include practical advice and information; short breaks or respite; specialist therapies such as physiotherapy, art therapy or play therapy; 24/7 end of life care; and bereavement support. Short breaks are a key part of a range of provisions that support disabled children and their families. They can include the provision of day, overnight and weekend activities for children and young people, and can take place in the child or young person’s own home, the home of an approved carer, or a residential or community setting.
Local authorities have a statutory duty to assess the social care needs of disabled children and young people, and to provide respite care where necessary. Where it is appropriate, local authorities can fund respite care provided by hospices, either as a short-term stay or as a service that the hospice team provide to the child or young person in the family home. Local authorities and ICBs regularly liaise to plan and commission the most appropriate package of respite care for children and young people with life-limiting or life-threatening conditions in their area.
The Government do not monitor the use of social care for children with palliative and end of life care needs, but local authorities are required to publish a local short breaks duty statement, which shows what services are available, how they respond to the needs of local carers and how they can be accessed, including any eligibility criteria. Local authorities must consider the needs of local parents and carers when preparing their statements, and they must review them regularly.
Palliative care services are included in the list of services that an integrated care board must commission. That promotes a more consistent national approach and supports commissioners to prioritise palliative and end of life care locally. To support ICBs in that duty, NHS England has published statutory guidance and service specifications, which include specific reference to ensuring that there is sufficient provision of specialist palliative care services and hospice beds, as well as future financial sustainability.
Most hospices are independent charitable organisations that receive some statutory funding from the NHS.