Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, if she will ask the Care Quality Commission to undertake an assessment of the quality of the commissioning of children's palliative care services by integrated care boards.

Answered by Helen Whately - Minister of State (Department of Health and Social Care)

The Care Quality Commission (CQC) recently completed the integrated care system (ICS) assessment pilots, which included an assessment of how health and social care provision is planned, coordinated, and delivered in a cohesive way.

For the pilots, the CQC assessed data and local intelligence relating to the safety and effectiveness of different types of services across primary care, secondary care, and adult social care. This included hospices and other palliative and end of life care services. ICS assessments do not inspect individual services or focus on specific sectors. The CQC seeks information from local and regional CQC operations teams, NHS England, and professional regulators such as the General Medical Council and the Nursing and Midwifery Council, to identify areas of good practice and high-performing services, as well as risks and concerns relating to specific providers or sectors. The CQC looks at aggregate ratings of different types of services within a geographical area to identify areas of risk that might require a particular focus during assessments.

The CQC’s ICS assessment methodology incorporates interviews and focus groups with commissioners, providers, patient representative groups, and voluntary and community sector organisations to understand how people experience care. Work continues to define the final methodology and approach, in line with the existing Departmental priorities.

The Department is in ongoing discussions with NHS England about oversight and accountability of National Health Service palliative and end of life care commissioning, and I have met with NHS England officials personally on this matter on a number of occasions. We remain committed to improving patient access to, and quality of, palliative and end of life care, and are working with NHS England to achieve this.

NHS England has developed a palliative and end of life care dashboard, which brings together all relevant local data in one place. The dashboard helps commissioners understand the palliative and end of life care needs of their local population, enabling integrated care boards (ICBs) to put plans in place to address and track the improvement of health inequalities, and ensure that funding is distributed fairly, based on prevalence.

Additionally, as of April 2024, NHS England will include palliative and end of life care in the list of topics for regular performance discussions between national and regional leads. These meetings will provide an additional mechanism for supporting ICBs to continue improving palliative and end of life care for their local population.

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what discussions she has had with integrated care boards on estimates they have made of how many children are accessing palliative care in their areas.

Answered by Helen Whately - Minister of State (Department of Health and Social Care)

While there is no explicit requirement for integrated care boards (ICBs) to identify how many children and young people specifically access palliative and end of life care services, the commissioning of palliative care services is the statutory duty of ICBs, which must commission these services in response to the needs of their population.

In July 2022, NHS England published statutory guidance for commissioners on palliative and end of life care, setting out the considerations for ICBs to meet their legal duties, and making clear reference to the importance of access to services.

NHS England has also published a service specification for children and young people, which provides guidance on undertaking assessments to enable high-quality commissioning of services, that meet both population need and preferences.

The Department is in ongoing discussions with NHS England about oversight and accountability of National Health Service palliative and end of life care commissioning, including for children and young people.

From April, NHS England will include palliative and end of life care in the list of topics for its regular performance discussions between national and regional leads. These national meetings will provide an additional mechanism for supporting ICBs to continue to improve palliative and end of life care for their local population.

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, if she will make an assessment of the potential merits of publishing a long-term strategy for supporting the palliative care needs of children and young people.

Answered by Helen Whately - Minister of State (Department of Health and Social Care)

While the National Health Service has always been required to commission appropriate palliative and end of life care services to meet the reasonable needs of the population, palliative care services were added to the list of services an integrated care board (ICB) must commission, promoting a more consistent national approach and supporting commissioners in prioritising palliative and end of life care. To support ICBs in this statutory duty, NHS England has published statutory guidance on palliative and end of life care, and a service specification for children and young people.

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, whether she has had discussions with NHS England on the adequacy of (a) regional planning and (b) accountability for children’s palliative care.

Answered by Helen Whately - Minister of State (Department of Health and Social Care)

The Department is in ongoing discussions with NHS England about the oversight and accountability of National Health Service palliative and end of life care commissioning.

From April 2024, NHS England will include palliative and end of life care in the list of topics for its regular performance discussions between national and regional leads.

NHS England has commissioned the development of a palliative and end of life care dashboard, which brings together relevant, all-age local data in one place. The dashboard helps commissioners understand the palliative and end of life care needs of those in their local population, including children, enabling integrated care boards to put plans in place to address and track the improvement of health inequalities.

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what recent steps her Department has taken to improve (a) services for children who require end of life care, (b) services for children with life threatening conditions and (c) services for children with life limiting conditions.

Answered by Helen Whately - Minister of State (Department of Health and Social Care)

Integrated care boards (ICBs) are responsible for determining the level of National Health Service funded palliative and end of life care for children locally, and they are responsible for ensuring that the services they commission meet the needs of their local population.

At a national level, in line with the NHS Long Term Plan, NHS England has provided approximately £12 million of match-funding to participating ICBs, and formerly CCGs, between 2020/21 and 2023/24. This was committed to invest in children and young people’s palliative and end of life care, giving a total investment of £24 million. In addition, NHS England supports palliative and end of life care for children and young people through the Children and Young People’s Hospice Grant. NHS England has confirmed that it will be renewing the funding for 2024/25, once again allocating £25 million of funding for children’s hospices using the same prevalence-based allocation approach as in 2022/23 and 2023/24. This prevalence-based approach ensures funding matches local need.

The Department is in ongoing discussions with NHS England to explore improving oversight and accountability of all-age NHS palliative and end of life care commissioning. Additionally, The Department, through the National Institute for Health and Care Research, is investing £3 million in a new Palliative and End of Life Care Policy Research Unit. This will help build the evidence base on all-age palliative and end of life care to inform policy making in this vital area.

NHS England’s palliative and end of life care team has recently engaged with 24 ICBs to understand how to better support commissioners, and has also reviewed all 42 ICB Joint Forward Plans for their inclusion of palliative and end of life care.

From April 2024, NHS England will include palliative and end of life care in the list of topics for regular performance discussions between national and regional leads. Additionally, NHS England has commissioned the development of a palliative and end of life care dashboard, which brings together all relevant data in one place. The dashboard helps commissioners understand the palliative and end of life care needs of their local population, including children, enabling ICBs to put plans in place to address and track the improvement of health inequalities.

Question to the Department of Health and Social Care:

To ask His Majesty's Government what assessment they have made of the prospects of equitable access to hospice care for all children and young people who need palliative and end of life care in 2024.

Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)

The Government recognises that access to high-quality, palliative and end of life care can make all the difference to individuals and their loved ones. Funding for children’s and young people’s palliative and end of life care is made available locally through integrated care boards (ICBs), which are responsible for commissioning services in response to the needs of their local population.

In addition, NHS England has confirmed that it will be renewing the Children and Young People’s hospice grant for 2024/25, once again allocating £25 million grant funding for children’s hospices. NHS England is reprioritising budgets for 2024/25, in light of the revised assessment of financial position and, whilst it is holding funding aside for the children and young people’s hospice sector, it cannot confirm further details, including the distribution mechanism, until 2024/25 financial planning is concluded.

Children and young people’s palliative and end of life care is provided by a range of services and providers from across the statutory and voluntary, community and social enterprise sectors. The majority of palliative and end of life care is provided by National Health Service staff and services, but we recognise that the voluntary sector organisations, including hospices, also play a very vital part in providing support to people at end of life and their loved ones.

The Government has not made a direct assessment of the prospects of equitable access to hospice care for all children and young people who need palliative and end of life care in 2024. However, NHS England’s palliative and end of life care team has recently engaged with 24 ICBs to understand how to better support commissioners and has also reviewed all 42 ICB Joint Forward Plans for their inclusion of palliative and end of life care, with 69% making a specific mention. Further analysis is ongoing, but the intention is to use this to help shape and focus support to ICBs.

Question to the Department of Health and Social Care:

To ask His Majesty's Government how much money was spent per case on palliative and end of life care for children and young people in (1) 2022, and (2) 2023; and how much they anticipate spending in 2024.

Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)

The Government does not hold information on how much money was spent per case on palliative and end of life care for children and young people in 2022 and 2023. Patient-level spend is not collated at a national level, with spend based on need determined during the integrated care board (ICB) commissioning process.

At a national level, NHS England supports palliative and end of life care for children and young people through the Children and Young People’s hospice grant. The grant provided approximately £17 million in 2021/22, £21 million in 2022/23 and £25 million in 2023/24 directly to children and young people’s hospices. NHS England has confirmed that it will be renewing the grant for 2024/25, once again allocating £25 million grant funding for children’s hospices using the same prevalence-based allocation approach as in 2022/23 and 2023/24. NHS England is reprioritising budgets for 2024/25, in light of the revised assessment of financial position and, whilst it is holding funding aside for the children and young people’s hospice sector, it cannot confirm further details, including the distribution mechanism, until 2024/25 financial planning is concluded.

Additionally, in line with the NHS Long Term Plan commitment, NHS England has provided approximately £8.5 million match-funding to participating ICBs and formerly clinical commissioning groups between 2022/23 and 2023/24 that committed to invest in children and young people’s palliative and end of life care, including hospices, giving a total investment of £17 million for that period.

Question to the Department of Health and Social Care:

To ask His Majesty's Government what directions and guidance the Department of Health and Social Care will provide to integrated care boards on commissioning palliative and end of life care for children and young people.

Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)

Children and young people’s palliative and end of life care is provided by a range of services and providers from across the statutory and voluntary, community and social enterprise sectors. Commissioning of these services is the statutory duty of integrated care boards (ICBs), which must commission palliative and end of life care services in response to the needs of their local population and ensure that they are provided by a range of local organisations with the experience and skills to meet those needs.

In July 2022, NHS England published statutory guidance for commissioners on palliative and end of life care, setting out the considerations for ICBs to meet their legal duties. A copy of this guidance is attached.

NHS England has also published a service specification for children and young people, which provides guidance on undertaking assessments to enable high-quality commissioning of services that meet both population need and preferences. A copy of this specification is attached.

NHS England’s palliative and end of life care team has recently engaged with 24 ICBs to understand how to better support commissioners, and has also reviewed all 42 ICB Joint Forward Plans for their inclusion of palliative and end of life care, with 69% of those plans making a specific mention. Further analysis is ongoing, but the intention is to use this information to help shape and focus support to ICBs.

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, which integrated care boards were granted match funding for children and young people’s palliative and end-of-life care from NHS England in the 2022-23 financial year; and how much did each integrated care board receive in that year.

Answered by Helen Whately - Minister of State (Department of Health and Social Care)

Match funding was provided by NHS England to the following integrated care boards (ICBs) via the Core scheme and the Expression of Interest Scheme. The following table shows the ICBs that received match funding and the value of that funding.

Question to the Department for Business, Energy and Industrial Strategy:

To ask the Secretary of State for Business, Energy and Industrial Strategy, if he will make it his policy to prioritise children’s hospice and palliative care providers for targeted financial support when the non-domestic Energy Bill Relief Scheme ends in March 2023.

Answered by Graham Stuart

HM Treasury is currently conducting a review of the EBRS and evidence from care providers is included. However, the Government cannot confirm which sectors will receive further support after 31st March 2023 until the end of the review, which will be reported by the end of the year 2022.

Question to the Department of Health and Social Care:

To ask His Majesty's Government, further to the Written Answer by Lord Markham on 22 November (HL3405), what plans they have, if any, to give an indication of (1) a timetable for the commencement of the independent review into the causes of disputes between those with parental responsibility and those responsible for the care or medical treatment of critically ill children, (2) details of the membership of the review, and (3) terms of reference for the review, which is due to report by 1 October 2023.

Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)

We expect the commissioning process to be completed in the coming weeks. While the review will not have a fixed membership, it will engage with a range of interested or affected people and organisations. This will include health professionals and the families of critically ill children, to ensure it develops a balanced evidence base for identifying solutions. The organisation undertaking the review will be asked to publish its terms of reference shortly after it has been commissioned.

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what his plans are for the (a) arrangement and (b) independence of a review into disputes relating to treatment of critically ill children as set out in the Health and Care Act 2022.

Answered by Maria Caulfield - Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women)

The Department has commissioned the Nuffield Council on Bioethics to undertake a review into disputes relating to treatment of critically ill children, which will commence on 12 December 2022. The Nuffield Council on Bioethics is an independent charitable body which will be responsible for the design, project management, activities and methods used in the review and its recommendations.

Question to the Department of Health and Social Care:

To ask His Majesty's Government, further to the answer by Lord Kamall on 8 September (HL Deb, col 272), whether they will provide an update on the progress of commissioning an independent review into the causes of disputes between those with parental responsibility and those responsible for the care or medical treatment of critically ill children.

Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)

The Department is currently examining the commissioning process for the review and further information will be available in due course.

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what specific support his Department provides to charities providing end of life care for children.

Answered by Gillian Keegan - Secretary of State for Education

No recent assessment has been made as the majority of hospices are independent charities which receive some statutory funding from integrated care boards (ICBs). ICBs are responsible for commissioning appropriate palliative and end of life care (PEoLC) services for children based on the needs of the local population.

NHS England has committed to increase its investment in local children’s PEoLC services, including hospices. NHS England has matched the investment made by clinical commissioning groups for children’s PEoLC, providing more than £7 million since 2020/21. This is in addition to £21 million being invested through the Children’s Hospice Grant by March 2023, to provide care closer to home. NHS England is also reviewing current models of care, commissioning pathways and financial formulas to ensure the sector supports children, young people, their families and loved ones. We will continue to engage with the sector to understand the issues it faces.

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what recent assessment his Department has made of the adequacy of the level of funding support for hospices and end of life care for children.

Answered by Gillian Keegan - Secretary of State for Education

No recent assessment has been made as the majority of hospices are independent charities which receive some statutory funding from integrated care boards (ICBs). ICBs are responsible for commissioning appropriate palliative and end of life care (PEoLC) services for children based on the needs of the local population.

NHS England has committed to increase its investment in local children’s PEoLC services, including hospices. NHS England has matched the investment made by clinical commissioning groups for children’s PEoLC, providing more than £7 million since 2020/21. This is in addition to £21 million being invested through the Children’s Hospice Grant by March 2023, to provide care closer to home. NHS England is also reviewing current models of care, commissioning pathways and financial formulas to ensure the sector supports children, young people, their families and loved ones. We will continue to engage with the sector to understand the issues it faces.

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, whether support is available for clinical commissioning groups to help ensure that decisions on funding end of life care for children meet local needs.

Answered by Gillian Keegan - Secretary of State for Education

NHS England has established seven palliative and end of life care (PEoLC) strategic clinical networks to improve access to and the quality and sustainability of services. These networks support commissioners to deliver clinical and personalised care for people with PEoLC needs, including for children and young people.

NHS England works with national and regional partners to review current models of care, commissioning pathways and financial formulas to support commissioners on funding decisions. NHS England has also committed to increasing its contribution to children’s PEoLC by matching the funding of clinical commissioning groups which commit to increase their investment in local children’s PEoLC services, including children’s hospices. This aims to increase National Health Service funding from £11 million to a combined £25 million a year by 2023/24.

Found: Anticipated Care Planning (ACP) or Future Care Planning; Workforce Education and Training; Public Health Palliative