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Childrens Palliative Care (1718049)

1. Do you commission palliative care for children and young people with life-limiting and life-threatening conditions between the ages of 0 and 25? If yes, how much did you spend on children’s palliative care in 2016/17?

Yes. The CCG’s commissioning activity in this area is as follows:

  • Contract with Martin House Hospice. In 2016/17 the cost of this contract was £68,400.
  • Services for children are commissioned as part of the CCG’s contract with Calderdale and Huddersfield Foundation Trust. The CCG does not routinely hold detailed information relating to specific service areas.
  • Individual packages of care for children at home are commissioned by the CCG’s continuing Health Care Team. The cost is 2016/17 was £42,819.

2. Do you have a published strategy or care pathway for children with life-limiting and life-threatening conditions? If so, please provide a link or an attachment.

No.

3. Did you ask for your local sustainability and transformation plan to include palliative care for children with life-limiting and life-threatening conditions?

Palliative care for children is not included specifically; however, the local transformation plan spans across all services for children and young people in the Calderdale area.

4. Do you assess numbers and needs of children and young people with life-limiting and life-threatening conditions between the ages of 0 and 25 among the population you serve (yes/no)?

No.

5. Do you jointly commission palliative care for children and young people with life-limiting and life-threatening conditions between the ages of 0 and 25 with your local authorities in a way which is consistent with the Children and Families Act 2014?

No.

6. Do you commission palliative care which enables a child or young person to receive end of life care at home if they wish to do so?

Yes. This is delivered through the block contract with Calderdale and Huddersfield Foundation Trust Children’s Team.

7. Do you commission a rapid transfer process for children and young people with life-limiting conditions to allow urgent transfer to the preferred place (for example from the intensive care unit to their home or to a children’s hospice)?

No, but we would review this on case-by-case basis as required (to date no requests received).

8. Do you take steps to integrate assessments, plans and services for children and young people with life-limiting and life-threatening conditions between the ages of 0 and 25, including those without a special educational need and disability (yes/no)? If yes, please tell us how (For example, using education, health and care plans).

Yes. Where children and young people with significant or complex special educational needs and disabilities have a life-limiting or life-threatening condition Education, Health and Care (EHC) Plans will include health and education provision. EHC Needs Assessments include health assessment information including that provided by specialist units. Identified provision includes health provision both around agreed outcomes and generic health provision. Where appropriate, provision through school is made available to children not able to come into school but well enough to be at home . A personalised approach is adopted wherever possible

9. Do you offer personal budgets to children and young people with life-limiting and life-threatening conditions? If yes, how many children and young people with life-limiting and life-threatening conditions in your area have a personal budget?

Yes. Nine young people have received personal budgets at a cost to date of £393,695.

10. Do you take steps to make sure that young people with life-limiting and life-threatening conditions can access palliative care services which are appropriate to their age and developmental stage (yes/no)? If yes, please tell us how.

Yes. This is part of the block contract with the Calderdale and Huddersfield Foundation Trust and its Children’s Team.

11. Do you take steps to make sure that young people with life-limiting and life-threatening conditions experience smooth transitions from children’s to adults’ palliative care services

Yes. Work is progressing on a Children &Young People(C&YP) transition plan in Calderdale. This plan focuses on seamless and smooth transitions for all C&YP.

12. Do you commission any of the following services for children with life-limiting or life-threatening conditions? If yes, please state which outcomes you ask service providers to achieve and how much you spent on them in 2016/17:

  • A level 4 paediatric palliative care consultant (yes/no)?

NHS Calderdale CCG commissions children’s services from Calderdale and Huddersfield Foundation Trust. Details of specific posts would need to be sourced from the provider. Freedom of information requests can be submitted to the Trust at foi@cht.nhs.uk.

  • Consistent with the NICE clinical guideline ‘End of Life Care for Infants, Children and Young people’, a multidisciplinary team that includes the following as a minimum –. Further information will be available from them

All our providers are expected to comply with NICE Guidance

  • a paediatric palliative care consultant
  • a nurse with expertise in paediatric palliative care
  • a pharmacist with expertise in specialist paediatric palliative care
  • experts in child and family support who have experience in end of life care (for example in providing social, practical, emotional, psychological and spiritual support)
  • Acute children’s palliative care nurses which provide children’s palliative care

See response above regarding level 4 paediatric palliative care consultant.

  • Community children’s nurses which provide children’s palliative care

See response above regarding level 4 paediatric palliative care consultant.

  • Voluntary sector children’s palliative care services (including children’s hospice services) (yes/no)? If yes, which voluntary sector services do you commission and how much did you spend on them in 2016/17?

Yes. See response to Q1.

  • Community paediatricians which provide children’s palliative care

See response above regarding level 4 paediatric palliative care consultant.

  • Emotional and psychological support for children and their families

No.

  • Bereavement care – to families before a child under the age of 1 has died

No.

  • Bereavement care – to families after a child under the age of 1 has died

No.

  • Bereavement care – to families before a child or young person aged 1 – 25 has died

No.

  • Bereavement care – to families after a child or young person aged 1 – 25 has died

No.

  • Equipment – including services which provide wheelchairs and services to maintain and repair equipment

Yes.

Wheelchair Services – £408,456 (please note the cost is for all ages, the CCG does not hold data broken down by age in this instance).

Specialist respiratory equipment. This is funded when required through the CCG’s continuing healthcare team. The CCG does not hold specific costs data as it is embedded in the overall cost of care.

13.Do you commission any of the following services to provide care out of hours and at weekends for children with life-limiting or life-threatening conditions? We define ‘out of hours and at weekends’ as 6:30pm – 8am on weekdays and all day on Saturdays, Sundays and Bank Holidays.

  • A level 4 paediatric palliative care consultant

No.

  • Consistent with the NICE clinical guideline ‘End of Life Care for Infants, Children and Young people’, a multidisciplinary team that includes as a minimum:
  • a paediatric palliative care consultant
  • a nurse with expertise in paediatric palliative care
  • a pharmacist with expertise in specialist paediatric palliative care
  • experts in child and family support who have experience in end of life care (for example in providing social, practical, emotional, psychological and spiritual support)

No.

  • Acute children’s palliative care nurses which provide children’s palliative care

No.

  • Community children’s nurses which provide children’s palliative care

No.

  • Voluntary sector children’s palliative care services (including children’s hospice services) (yes/no)? If yes, which voluntary sector services do you commission and how much did you spend on them in 2016/17?

Yes. Martin House Hospice is a 24/7 service. See response to question 1.

  • Community paediatricians which provide children’s palliative care

No.

  • Emotional and psychological support for children and their families

No.

  • Bereavement care – to families before a child under the age of 1 has died

No.

  • Bereavement care – to families after a child under the age of 1 has died

No.

  • Bereavement care – to families before a child or young person aged 1 – 25 has died – No

No.

  • Bereavement care – to families after a child or young person aged 1 – 25 has died

No.

  • Equipment – including services which provide wheelchairs and services to maintain and repair equipment

No.

14.Do you commission the following services to children and young people with life-limiting and life-threatening conditions between the ages of 0 and 25 (yes/no)? If yes, please state how much you spent on them in 2016/17:

  • short breaks (respite)

No.

  • step-down care

No.

  • end of life care

No.

15.Are you implementing the NICE clinical guideline ‘End of Life Care for Infants, Children and Young People: Planning and Management’

All our providers are expected to comply with NICE Guidance.

16.Are you implementing ‘Our Commitment to you for end of life care: The Government Response to the Review of Choice’ for children and young people with life-limiting and life-threatening condition? (yes/no). If yes, please tell us about the steps you are taking.

The CCG does not hold this information.

 

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