FOI 2025/1409

The questions below which we would like you to answer are designed to help us understand how NHS Greater Manchester ICB commissions palliative care for children and young people with life-limiting and life-threatening conditions in its ICB footprint. In order to help you meet our request, I provide definitions to the terms used in my questions below:

Children’s palliative care

“An active and total approach to care, from the point of diagnosis or recognition, throughout the child’s life, death and beyond. It embraces physical, emotional, social and spiritual elements and focuses on the enhancement of quality of life for the child or young person and support for the family. It includes the management of symptoms, provision of short breaks and care through death and bereavement.”

Life-limiting and life-threatening conditions

“Life-limiting conditions are those for which there is no reasonable hope of cure and from which children will die. Some of these conditions cause slow deterioration over time rendering the child increasingly dependent on parents and carers.

Life-threatening conditions are those for which curative treatment may be feasible but can fail, such as cancer.”

End of life care

“Care that helps all those with advanced, progressive, incurable illness, to live as well as possible until they die. It focuses on preparing for an anticipated death and managing the end stage of a terminal medical condition. This includes care during and around the time of death, and immediately afterwards. It enables the supportive and palliative care needs of both child/young person and the family to be identified and met throughout the last phase of life and into bereavement. It includes management of pain and other symptoms and provision of psychological, social, spiritual and practical support and support for the family into bereavement.”

Please note that NHS England has created a draft Children’s and Young People’s Palliative and End of Life Care Service Specification. This is available for ICBs to access here from the NHS England website.

We have also launched a new resource to help ICBs commission children’s palliative care. This resource can be accessed here.

The following national standards and guidance apply to palliative and end of life care for children and young people in England:

Ambitions for Palliative and End of Life Care. Available to download from: https://www.england.nhs.uk/publication/ambitions-for-palliative-and-end-of-life-care-a-national-framework-for-local-action-2021-2026/

Palliative and end of life care: statutory guidance for integrated care boards (ICBs): https://www.england.nhs.uk/publication/palliative-and-end-of-life-care-statutory-guidance-for-integrated-care-boards-icbs/

NICE Guidance NG 61: End of life care for infants, children and young people with life-limiting conditions: planning and management

https://www.nice.org.uk/guidance/ng61

NICE Quality Standard QS 160: 2017. End of life care for infants, children and young people – NICE quality standard [QS160].

https://www.nice.org.uk/guidance/qs160

NICE guideline NG43: 2016. Transition from children to adults’ services for young people using health or social care services

https://www.nice.org.uk/guidance/ng43

NICE Quality standard QS140: 2016. Transition from children to adults’ services https://www.nice.org.uk/guidance/qs140

My questions

1. Does your ICB have a children’s palliative care service specification? (Yes/No). If yes, please attach a copy to your response to this request.
2. Has your ICB completed an Ambitions for Palliative and End of Life Care self-assessment? (Yes/No). If yes, please attach your completed self-assessment to your response to this request.
3. In your local area, does your ICB commission services which ensure infants, children and young people with a life-limiting or life-threatening condition and their parents or carers have opportunities to be involved in developing an advance care plan? (Yes/No/Partially). If yes or partially, please provide supporting evidence such as a relevant service specification.
4. In your local area, does your ICB commission services which ensure infants, children and young people with a life-limiting or life-threatening condition have a named medical specialist who leads and coordinates their care? (Yes/No/Partially). If yes or partially, please provide supporting evidence such as a relevant service specification.
5. In your local area, does your ICB commission services which ensure infants, children and young people with a life-limiting or life-threatening condition, their parents or carers and their siblings are given information about emotional and psychological support, including how to access it? (Yes/No/Partially). If yes or partially, please provide supporting evidence such as a relevant service specification.
6. In your local area, does your ICB commission services which ensure infants, children and young people with a life-limiting or life-threatening condition are cared for by a multidisciplinary team that includes members of the specialist paediatric palliative care team? (Yes/No/Partially). If yes or partially, please provide supporting evidence such as a relevant service specification.
7. In your local area, does your ICB commission services which ensure siblings and parents or carers of infants, children and young people approaching the end of life are offered support for grief and loss when their child is nearing the end of their life and after their death? (Yes/No/Partially). If yes or partially, please provide supporting evidence such as a relevant service specification.
8. In your local area, does your ICB commission services which ensure infants, children and young people approaching the end of life and being cared for at home have 24-hour access to both children’s nursing care and advice from a consultant in paediatric palliative care? (Yes/No/Partially). If yes or partially, please provide supporting evidence such as a relevant service specification.

1. 1. Note: We would like to capture those areas where registered nurses can provide both core and specialist children’s palliative care to children with a range of medical complexity. We acknowledge that, where this is provided, it is done so by nurses with different roles, employed by the NHS and/or the voluntary sector. This will include specialist children’s palliative care nurses providing care directly or providing advice to other nurses providing direct care.
   2. Note: NHS England state that specialist children’s palliative care teams should be led by specialist medical consultants. These specialist consultants are vital because they:
2.  i. Have specialist expertise in managing life-threatening illness and life-limiting conditions across the paediatric spectrum.
3. ii. The ability to manage the full range of symptoms experienced as disease and illness progresses.
4. iii. Lead and develop services within their region.
5. iv. Enable, support, teach and train other health care professionals.

9. In your local area, does your ICB commission services which ensure infants, children and young people with a life-limiting or life-threatening condition and their families have access to regular short breaks for respite? (Yes/No/Partially). If yes or partially, please provide supporting evidence such as a relevant service specification.

1. No. There is a national service specification for Children and Young People (CYP) Palliative and end of life care which Greater Manchester work towards.

NHS England » Service specifications for palliative and end of life care: Children and young people (CYP).

2. Self assessments are completed by localities. Each locality has carried out a self-assessment. However, it will be necessary for you to contact the provider organisations for the information you seek. To assist you please find below links to the Trust’s websites and information about how to make a Freedom of information request.

3. – 9. No, it will be necessary for you to contact the provider organisations for the information you seek. To assist you, please find below links to their websites with information about how to make a Freedom of Information request.

Bolton NHS Foundation Trust – Freedom of information – Bolton NHS FT (boltonft.nhs.uk)

Northern Care Alliance NHS Foundation Trust – Freedom of Information Requests :: Northern Care Alliance

Manchester University NHS Foundation Trust – Freedom of Information – Manchester University NHS Foundation Trust (mft.nhs.uk)

Stockport NHS Foundation Trust – Freedom of Information – Stockport NHS Foundation Trust

Tameside and Glossop Integrated Care NHS Foundation Trust – Freedom of Information Requests :: Tameside and Glossop Integrated Care (tamesideandglossopicft.nhs.uk)

Wrightington, Wigan and Leigh Teaching Hospitals NHS Foundation Trust – WWL Teaching Hospitals NHS Foundation Trust | FOI Disclosure Log