Feb. 19 2008
Source Page: Better care, better lives. Improving outcomes and experiences for children, young people and their families living with life-limiting and life-threatening conditions. 54 p.Found: Better care, better lives.
Asked by: Baroness Hodgson of Abinger (Conservative - Life peer)
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.
Asked by: Fleur Anderson (Labour - Putney)
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.
Asked by: George Howarth (Labour - Knowsley)
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 implications for her policies of the report by Together for Short Lives entitled The deep disparity in NHS funding for children who need hospice care, published on 13 December 2023.
Answered by Helen Whately - Minister of State (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. The commissioning of children and young people’s palliative and end of life care services is the statutory duty of integrated care boards (ICBs). ICBs must commission palliative and end of life care services in response to the needs of their population, provided by a range of local organisations with the experience and skills to meet those needs.
Whilst the majority of palliative and end of life care is provided by National Health Service staff and services, we recognise the vital part that voluntary sector organisations, including hospices, also play in providing support to people at end of life and their families. Most hospices are charitable, independent organisations which receive some statutory funding for providing NHS services. The amount of funding hospices receive is dependent on many factors, including what other statutory services are available within the ICB footprint. Charitable hospices are autonomous organisations that provide a range of services which go beyond that which statutory services are legally required to provide. Consequently, the funding arrangements reflect this.
Due to the way the hospice movement organically grew, hospice locations were largely not planned with geographic or demographic purposes as a driving force. Therefore, there are inequalities with access to hospice services, especially for those living in rural or socio-economically deprived areas. It is therefore vital that hospices and statutory services work together to provide ensure their populations have access to palliative and end of life care when they need it.
At a national level, in line with the NHS Long Term Plan commitment, NHS England (NHSE) has provided circa £12 million match-funding to participating ICBs (and formerly clinical commissioning groups) between 2020/21 and 2023/24 which committed to invest in children and young people’s palliative and end of life care, including children and young people’s hospices, giving a total investment of £24 million. In addition, NHSE supports palliative and end of life care for children and young people through the Children and Young People’s Hospice Grant. NHSE 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. This prevalence-based approach ensures funding matches local need.
NHSE’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.
Palliative and end of life care has been added to the agenda for Regional Quality and Performance meetings. Additionally, NHSE has commissioned the development of 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 those their local population, including the ability to filter the available information, such as by deprivation or ethnicity, thereby, enabling ICBs to put plans in place to address and track the improvement of health inequalities.
Asked by: Rachael Maskell (Labour (Co-op) - York Central)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps her Department is taking to help ensure that people receive a good standard of hospice care if they reside in an area covered by an integrated care board that provides less than the national average level of funding for hospices.
Answered by Helen Whately - Minister of State (Department of Health and Social Care)
Whilst the majority of palliative and end of life care is provided by National Health Service staff and services, we recognise the vital part that voluntary sector organisations, including hospices, also play in providing support to people, and their families, at end of life. Most hospices are charitable, independent organisations who receive some statutory funding for providing NHS services. Charitable hospices are autonomous organisations that provide a range of services which go beyond that which statutory services are legally required to provide. Consequently, the funding arrangements reflect this.
In July 2022, NHS England published statutory guidance for commissioners on palliative and end of life care, setting out the considerations required for integrated care boards (ICBs), in order to meet their legal duties. This can be found at the following link:
NHS England has also published service specifications, for both adults and children and young people, which provide guidance on undertaking assessments to enable high-quality commissioning of services that meet both the population need and preferences. These can be found at the following link:
The Department is in ongoing discussions with NHS England about the oversight and accountability of NHS palliative and end of life care commissioning. We remain committed to improving patient access to, and quality of, palliative and end of life care, and are working with NHS England to reduce disparities in the standard of palliative and end of life care across the country.
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. These national meetings will provide an additional mechanism for supporting ICBs in continuing to improve palliative and end of life care for their local population. Additionally, NHS England has commissioned the development of a palliative and end of life care dashboard, which brings together relevant local data in one place. The dashboard helps commissioners understand the palliative and end of life care needs of those in their local population, enabling ICBs to put plans in place to address and track the improvement of health inequalities.
Asked by: Bell Ribeiro-Addy (Labour - Streatham)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps she is taking to ensure that seriously ill children and their families can access information on how to access emotional and psychological support.
Answered by Maria Caulfield - Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women)
The clinical team responsible for a seriously ill child’s physical healthcare should discuss and review their emotional and psychological status regularly with them, or their family, and support them with access to information and services for their mental health if needed. Commissioners are encouraged to ensure local pathways include assessment and ongoing support of patients’ mental and psychological wellbeing and cognitive status.
The Health and Care Act 2022 placed a legal duty on integrated care boards (ICBs) to commission palliative and end of life care services, which meet the needs of their whole population. To support ICBs in this, NHS England has published statutory guidance, along with service specifications for children and young people, which make reference to including a holistic approach to care. This includes links to social prescribing, assessing, and addressing the needs of children, young people and families, and clear referral pathways to other services such as children and young people’s mental health services. The statutory guidance and the service specifications for children and young people are available respectively at the following links:
Patients’ family members who feel they need emotional and psychological support should speak to their general practice, or can self-refer to NHS Talking Therapies online. Details are available on the NHS website.
Dec. 18 2007
Source Page: Operating framework 2007/08: PCT baseline review of services for end of life care. 16 p.Found: Operating framework 2007/08: PCT baseline review of services for end of life care. 16 p.
Mentions:
1: Sally-Ann Hart (Con - Hastings and Rye) Hastings and Rye, and Demelza House, which offers palliative care for children—largely through outreach - Speech Link
2: Barry Gardiner (Lab - Brent North) I wish to highlight the importance of palliative care for children and the amazing support that some - Speech Link
3: Steve Double (Con - St Austell and Newquay) It supports children and young people up to the age of 21, including the youngest babies who need its - Speech Link
4: Patrick Grady (SNP - Glasgow North) That means an ever-greater need for palliative care. - Speech Link
5: Andrew Gwynne (Lab - Denton and Reddish) Care Act 2022 to commission palliative care services in keeping with local need, and we need to ensure - Speech Link
Oral Evidence Apr. 23 2024
Committee: Health and Social Care Committee (Department: Department of Health and Social Care)Found: It has also managed to increase the number of people who are registered for palliative care on the