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Freedom of Information requests to CCGs in England 2020/21

The APPG for Children Who Need Palliative Care and Together for Short Lives have issued freedom of information requests to NHS clinical commissioning groups (CCGs) in England.

These requests aim to understand the extent to which key elements of children’s palliative care are being commissioned by CCGs.

The requests ask CCGs:

1. Do you have a children’s palliative care service specification?

2. Do you have a children’s palliative care service specification which states that infants, children and young people with a life-limiting condition and their parents or carers should have opportunities to be involved in developing an advance care plan?

3. Do you have a children’s palliative care service specification which states that infants, children and young people with a life-limiting condition should have a named medical specialist who leads and coordinates their care?

4. Do you have a children’s palliative care service specification which states that infants, children and young people with a life-limiting condition and their parents or carers should be given information about emotional and psychological support, including how to access it?

5. Do you have a children’s palliative care service specification which states that infants, children and young people with a life-limiting condition should be cared for by a multidisciplinary team that includes members of the specialist paediatric palliative care team?

6. Do you have a children’s palliative care service specification which states that parents or carers of infants, children and young people approaching the end of life should be offered support for grief and loss when their child is nearing the end of their life and after their death?

7. Do you have a children’s palliative care service specification which states that infants, children and young people approaching the end of life and being cared for at home should have 24-hour access to both children’s nursing care and advice from a consultant in paediatric palliative care?

8. Do you have a children’s palliative care service specification which states that infants, children and young people with a life-limiting condition and their families should have access regular short breaks for respite?

We will publish the CCG responses here once the results are published.

Policy and influencing