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HAVE YOUR SAY - NICE Quality Standard - End of life care for infants, children and young people

26 April 2017 - 12:39pm

File 205455Terminally ill children should have access to around-the-clock homecare, says NICE

Research says 68% of families would prefer to spend their final days together at home, and that this desire increases to 80% when the child is thought to be in their last month of life

NICE has published a draft standard aiming to improve end of life care for children in England.

It says families who are caring for terminally ill children at home should have 24-hour access to specialist medical support and advice.

Estimates suggest there are close to 40,000 terminally ill children and young people in England.

Research says 68% of families would prefer to spend their final days together at home, and that this desire increases to 80% when the child is thought to be in their last month of life.

However, the 2012 British Social Attitudes Survey found nearly two thirds of people (adults and children) would change their minds about dying at home if sufficient support from family, friends and healthcare staff were not available.

And research from Dying Matters found half of expected deaths currently happen in hospital, despite almost one in three of us saying we would prefer to die at home.

NICE says families caring for a terminally ill child should be supported so that the child can receive the right care, in the environment of their choice. This will mean they can enjoy the highest quality of life possible.

Professor Gillian Leng, deputy chief executive at NICE, said: “A hospital is not always the best place for a dying child. Sometimes being cared for at home, in familiar surroundings with the people they love beside them can be much more beneficial.

“We need to make sure families have the support they need. Children should be able to access the right care in the right place for them.

“The final moments we spend we loved ones can form some of the strongest memories. We have to get it right.”

Have your say

The draft Quality Standard on End of Life Care for Babies, Children and Young People is now out for consultation. 

APCP is a stakeholder in this consultation and as such we will be submitting comments.  This is a valuable opportunity to ensure that the Quality Standard considers issues important to our members.

TO HAVE YOUR COMMENTS INCLUDED IN THE APCP RESPONSE please read the draft quality standard.

NICE are particularly interested in the following questions:

Question 1: Does this draft quality standard accurately reflect the key areas for quality improvement?

Question 2: Are local systems and structures in place to collect data for the proposed quality measures? If not, how feasible would it be for these to be put in place?

Question 3: Do you think each of the statements in this draft quality standard would be achievable by local services given the net resources needed to deliver them? Please describe any resource requirements that you think would be necessary for any statement. Please describe any potential cost savings or opportunities for disinvestment.

Questions about the individual quality statements:

Question 4: For draft quality statement 2: Can stakeholders suggest who the medical specialist should be?

Question 5: For draft quality statement 4: Can stakeholders suggest how performance would be measured in practice? Are there specific symptoms or timescales that would be more suitable as the focus of quality improvement?

Local practice case studies:

Question 6: Do you have an example from practice of implementing the NICE guideline(s) that underpins this quality standard? If so, please submit your example to NICE local practice case studies on the NICE website. Examples of using NICE quality standards can also be submitted. 

If you have any comments, please use the comments box below so that we can include your comments in the APCP rsponse.  We need your comments no later than Friday, 12th May 2017.

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