Campaign for every family to get 24/7 end of life care at home for seriously ill children

Together for Short lives publishes children’s palliative care maps and launches the #EveryDayEveryNight Campaign in England.

On the 19^th May Together for Short Lives published a report of the findings of their 2021 work to map children’s palliative care services across England (Click here to download). They also launched their #EveryDayEveryNight Campaign in England.

New Online Maps

In addition to the report, Together for Short lives have also made a series of eight online maps available on their website which show, using a series of layers which can be switched on and off, the following:

• where the different NICE quality standards on children’s palliative care are being met across England, by local authority footprint; these are based on information provided to us by the children’s palliative care networks across England in 2021. Each network’s response form is also linked to in the report.

• the 42 integrated care system (ICS) areas in England, colour coded according to the number of children and children and young people aged 0-24 with life-limiting conditions per ICS area

• NHS clinical commissioning groups (CCGs), colour coded according to whether they commission services to meet that standard (only available on maps 1, 4, 8 and 8)

• where inpatient children’s palliative care services (including specialist NHS centres and children’s hospices) are located

• where Westminster parliamentary constituencies are located; we hope that this will help us to show individual MPs whether or not standards are being met – and help us to motivate them to lobby the UK Government.

Key message: only a small minority can access 24/7 end of life care at home supported by both community nursing with access to specialist consultant advice

Our key messages focus on the patchy and inconsistent access that infants, children and young people approaching the end of life and being cared for at home have to 24-hour children’s nursing care and advice from GRID-trained specialist paediatric palliative medicine consultants.

This key map shows that just a third (33%) of NHS clinical commissioning groups (CCGs) in England have a service specification which states that this standard should be met. This means that CCGs in just under a fifth (19%) of ICS areas have a specification which says that children approaching the end of life should have access to 24-hour palliative support at home which meets the standard. The standard is partially commissioned by CCGs in just over a fifth (21%) of ICS areas – and not at all in nearly half (45%) of ICS areas.

In the report, Together for Short lives highlight how, where it is available, children’s end of life care at home is provided by children’s nurses as part of NHS community children’s nursing (CCN) teams, hospice at home teams, hospital outreach teams or a combination. Nurse consultants, clinical nurse specialists and/or children and young people’s oncology outreach and symptom care nurse specialists (CYPOONS) have the skills and experience to manage a range of symptoms, including prescribing where needed. In many cases, the medical support provided by consultant paediatricians, including those who have completed special interest (SPIN) training in paediatric palliative care, is sufficient to manage these symptoms.

However, it is important that nurses and paediatricians providing children’s end of life care in family homes in every part of England have access to advice from GRID-trained specialist paediatric palliative medicine consultants. This should be organised using a hub and spoke network model in each region. They have the skills and experience to meet the most complex palliative care needs, either directly or remotely through advice provided to other paediatricians. This is the level of care is set out in guidance and quality standards published by NICE.

Therefore, Together for Short Lives are concerned that the extent to which terminally ill children and their families can access services which fully meet the NICE quality standard is very patchy and depends on where they live. While the 24/7 end of life care standard is met in just over half (54%) of local authority areas in England during normal working hours, it is not being met in four fifths (81%) of local authority areas 24/7. This means that the 24/7 standard is not being met in nearly four fifths (79%) of integrated care system (ICS) areas. It is only being met fully in three ICS areas (7%). It is being partially met in six (14%) ICS areas.

The mapping has identified that, in particular, children and families living in parts of the North West, West Yorkshire, The Black Country and West Birmingham are facing difficulty in obtaining 24/7 palliative support at home that fully meets the NICE standard.

The 24/7 #EveryDayEveryNight campaign

The Together for Short Lives campaign is based around an open letter to the Prime Minister by bereaved mother Claire Young, which they want as many people to sign as possible. Claire received superb 24/7 end of life care at home for her son George, provided by the NHS South Warwickshire community children’s palliative care team, and is calling on the UK Government to act to make sure that this level of care is available to all children who need palliative care across England.

They are seeking to influence the UK Government to end this inequality and ensure that every family of a seriously ill child in England can choose for them to die at home if that is what is right for them. This includes calling on ministers to take the following urgent action:

• make sure the £2.26million annual gap in funding for training for specialist paediatric palliative care consultants is filled – and increase the number of other professionals, including children’s nurses who can provide palliative care at home.

• make sure an additional £301million per year to fund children’s palliative care services in hospitals, children’s hospices and in the community
• commit to maintaining the NHS England children’s palliative care match funding and the Children’s Hospice Grant beyond 2023/24.

If you are from the UK, you can help by:

• Supporting Together for Short Lives campaign on your social media channels; Follow T: @Tog4ShortLives I: @togetherforshortlives F: @togetherforshortlives

• Share Claire’s open letter with all your networks, and families accessing your service and sign the letter.
• You can read Claire and Georges’ story here.

• Contact your local MPs to ask for their support for the #EveryDayEveryNight campaign in parliament.

• Encourage the families you work with, your friends and your colleagues to sign the open letter.
• If you are from other parts of the world, please do also share the campaign on your social media channels as appropriate.

Andy Fletcher, CEO for Together for Short Lives added:

“Having access to specialist children’s palliative care, when and where they need it, must be afforded to every family caring for a seriously ill child. If ministers do not act now more and more seriously ill children and their families will be denied choice and control over their palliative care, especially at end of life.”