Transforming the lives of children
with life-shortening conditions:
policy priorities for the next
Scottish Government
March 2016
Transforming the lives of children with life-shortening conditions: policy priorities for
the next Scottish Government
Contents
1.
2.
3.
4.
5.
Introduction
Six manifesto asks
A parent’s view
About Together for Short Lives
About children and young people with life-shortening conditions
Introduction
The next Scottish Government has a vital opportunity to transform the lives of the 15,000
children and young people in Scotland with serious, life-shortening conditions who are
unlikely to reach adulthood.
Although their number is small, the needs of these children are highly complex. Some will
have conditions, such as cancer and muscular dystrophy, which are relatively well known to
us. Some will have conditions which are so rare that they do not yet have a name. All will
need ongoing children’s palliative care from the point at which their condition is recognised
until the end of their lives. They and their families need regular short breaks to help them get
through the often gruelling routine of appointments, assessments and, in many cases, round
the clock care, day and night. Young people with life-shortening conditions should receive
services which are appropriate to their age and developmental stage - and experience
smooth and a well-planned transition to adulthood. Ultimately, these children and young
people will need care at the end of their lives. Their families will need ongoing bereavement
support before, during and after their child’s death.
A number of individuals and organisations provide this care in Scotland: acute hospitals;
community nursing teams; children’s hospices; specialist services and social care teams to
name but a few. All need to be available to support families when and where they need it,
including at evenings and weekends. All need fair and sustainable state funding. And all
need to provide joined-up care which centres on the child and their family.
We recognise that we are not starting from square one in trying to improve the lives of
these children, young people and families; we welcome and support the Scottish
Government’s new Strategic Framework for Action on Palliative and End of Life Care.1
The commitments we ask parties to make in this document are consistent with the
framework’s recommendations and would help realise them in the coming
Parliamentary term.
We also recognise the significant fiscal challenge facing the next Scottish Government. We
strongly believe that the commitments we ask for here will not only transform the lives of
children, young people and families - but will also help ministers to prevent more unplanned
and unnecessary emergency admissions to hospital which result from poorly planned and
co-ordinated services for seriously ill children.
Time is short for these children and young people. Many will not be alive when people of
Scotland next go to the polls to elect their Parliament. It is vital that all the parties contesting
1
Scottish Government (2015). Strategic Framework for Action on Palliative and End of Life Care
2016-2021. Available to download from: http://bit.ly/1QtJXa6
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these elections make the commitments we ask for here - and work with us to make better
outcomes a reality for children and young people with life-shortening conditions.
Barbara Gelb OBE
Chief Executive
Together for Short Lives
This document has been developed in discussion with members of the children’s palliative
care sector in Scotland, including:

Children’s Hospice Association Scotland (CHAS)

Elizabeth Gillespie (Team Leader, Community Children's Nursing Team, Southbank
Child Development Centre, Glasgow)

Dr Ros Scott (Voluntary Sector Consultant, Honorary Research Fellow, University of
Dundee and Co-Chair EAPC Task Force for Volunteering in Hospice and Palliative
Care)

Audrey Toshney (Paediatric Complex Needs/Palliative Care Nurse Specialist,
Armitstead Child Development Centre, Kingscross Hospital, Dundee).

Charlie House
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Our six manifesto asks
We are asking the political parties contesting the Scottish Parliamentary elections to make
the following commitments in their manifestos for the May 2016 election:
1. “We will make sure that NHS boards and local authorities fund all children’s
palliative providers care fairly and sustainably - including funding 50% of the
costs incurred by Children’s Hospice Association Scotland (CHAS).”
2. “We will support Health and Social Care Partnerships to test and implement better
ways of identifying those who can benefit from palliative and end of life care - and
of co-ordinating their care.”
3. “We will support the workforce by commissioning NHS Education for Scotland
and the Scottish Social Services Council to develop a new palliative and end of life
care Educational Framework. This will address the needs of the health and social
care workforce and will be focused on fostering an integrated and collaborative
approach to educational provision.”
4. “We will make sure that all health boards appoint a lead children’s palliative care
clinician so that children in all areas of Scotland can access specialist palliative
care.”
5. “We will make sure that health boards and local authorities provide training to
adult services providers about the needs of young adults and we will support
young adults to have a smooth transition between children’s and adult services.”
6. “We will place a legal duty on local authorities to provide and fund short breaks to
families caring for disabled children.”
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Our six manifesto asks
Funding
1. Responsibly meeting the cost of children’s palliative care
The issue:
Every child with a life-shortening condition, and their family, should have access to palliative
care services, including children’s hospices, which receive fair and sustainable statutory
funding.
Currently, NHS boards and local authorities contribute just 12% of the care costs incurred by
Children’s Hospice Association Scotland - lower than the 25% recommended by the Scottish
Government in a directive to NHS Boards in 2012 (CEL 12) and far below the 50%
recommended for adult hospices.2
The next Scottish Government should make the following commitment:
“We will make sure that NHS boards and local authorities fund children’s palliative
care fairly and sustainably - including funding 50% of the costs incurred by Children’s
Hospice Association Scotland (CHAS).”
Care
2. Meeting the growing demand
The issue:
The ChiSP study3 (launched on 4 November 2015) found that there may be as many as
15,404 babies, children and young people in Scotland who could benefit from palliative care.
The Strategic Framework for Action on Palliative and End of Life Care recognises that
‘improvements are urgently needed in the reliable identification of people who might benefit
from palliative care’.4
The next Scottish Government should make the following commitment:
“We will support Healthcare Improvement Scotland in providing Health and Social
Care Partnerships with expertise in testing and implementing improvements to
identify those who can benefit from palliative and end of life care and in the coordination of their care.” [Framework for Action commitment 1]
2
Scottish Government Health and Social Care Directorate (2012). CEL12: a partnership for better
palliative and end of life care. Available to download from: http://bit.ly/1RT6jmd
3 Fraser et al. (2015). Children in Scotland requiring Palliative Care: identifying needs and numbers.
Available to download from: http://bit.ly/1Krn2EU
4 Scottish Government (2015). Strategic Framework for Action on Palliative and End of Life Care
2016-2021. Available to download from: http://bit.ly/1QtJXa6 . p.11.
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3. The nursing workforce
The issue:
Children’s palliative care requires a well-trained, highly-skilled workforce. However, the lack
of community children’s nursing (CCN) teams across Scotland inhibits the extent to which
palliative care can be provided at or closer to home and there is no active training program
for CCNs in Scotland. While the Royal College of Nursing recommend that a minimum of 20
whole-time-equivalent CCNs are required for an average-sized district with a child population
of 50,000, only 17 CCNs were due to qualify in 2014/15 across the UK.5
Together for Short Lives’ Nursing Vacancy Survey 2015 has found that, on average, 10% of
nursing posts within voluntary children’s palliative care organisations remain vacant- the
same as the first Nursing Vacancy Survey in 2014.6 This is higher than the NHS average
nurse vacancy rate (7%). 60% of the vacancies in the survey are defined as hard to fill,
which means that they were vacant for over three months.
The next Scottish Government should make the following commitment:
“We will support the workforce by commissioning NHS Education for Scotland and
the Scottish Social Services Council to develop a new palliative and end of life care
Educational Framework. This will address the needs of the health and social care
workforce and will be focused on fostering an integrated and collaborative approach
to educational provision.” [Framework for Action commitment 3]
4. The medical workforce
The issue:
Every child who needs one should have access to a children’s palliative care specialist. We
support the approach taken by Arran and Ayrshire Health Board to enable an Associate
Paediatrician to complete the post graduate medical Diploma in Palliative Medicine in order
to medically lead children’s palliative medicine within this area.
The next Scottish Government should make the following commitment:
“We will make sure that all health boards appoint a lead children’s palliative care
clinician so that children in all areas of Scotland can access specialist palliative care”
5. Smoother transitions - from children’s to adult palliative care services and more services
which meet the specific needs of young people with life-shortening conditions
The issue:
Advances in medicine and care mean that many children and young people with
life-shortening conditions are living longer and many now survive into adulthood. The
number of 16 to 19 year olds with life-shortening conditions has nearly doubled across the
UK in the last decade. Too many young people who need palliative care reach a ‘cliff edge’
when the time comes for them to transition from children’s to adult services. Research has
shown that individual key workers, frequent assessments and increased understanding of
The Royal College of Nursing (2014). The future for community children’s nursing: challenges and
opportunities. Available to download from: http://bit.ly/10YNzcT
6 Together for Short Lives (2016). Nursing Vacancy Survey 2015. Available to download from:
http://bit.ly/1p88UMo
5
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the needs of young people can improve transitional arrangements.
In the ‘We need to talk about palliative care’ report7, the Health and Sport Committee
expressed its disappointment ‘to hear of the issues that patients and their families have
experienced when transitioning between services and appreciates how frustrating and
stressful this must be for them’.
The next Scottish Government should make the following commitment:
“We will make sure that health boards and local authorities provide training to adult
services providers about the needs of young adults and we will support young adults
to have a smooth transition between children’s and adult services.”
6. Giving families a break - making sure that local authorities provide short breaks for
children with life-shortening conditions and their families
The issue:
Children’s palliative care is an active and total approach to care for the whole family. Short
breaks outside of the home are provided by a range of organisations, including children’s
hospices and they allow children and young people to be independent and take part in
activities that they may not otherwise be able to. For parents, this gives them the opportunity
to spend time together, with their other children, or simply have a rest. Emergency short
breaks outside the home also provide vital cover for families if the primary carer is for any
reason unable to care for their child.
Short breaks inside the home, such as ‘hospice at home’ services, provide a few hours of
respite care to families by visiting the home to care for the child or young person. This form
of short break is vital in sustaining families who care for their children often over many years
as it allows parents to take a break from caring around-the-clock, while their child’s needs
are being met. This allows them time to do what other parents might do – the family
shopping, going to appointments, or having time to themselves.
The Carers Bill requires local authorities to consider the best way to support carers and to
publish information detailing the provision of local short breaks, but does not oblige local
authorities to provide short breaks for the families of disabled children.8
The next Scottish Government should make the following commitment:
“We will place a legal duty on local authorities to provide short breaks to families
caring for disabled children”
7
Scottish Parliament Health and Sport Committee (2015). We need to talk about palliative care, 15 th
Report, 2015 (Session 4). Available to download from: http://bit.ly/1RTdoDd p.48.
8 Scottish Parliament. Carers (Scotland) Bill [as introduced]. Session 4 (2015).
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A parent’s view
Tracy Johnstone, mother of Louis
Having a child with a condition that means
he will be unlikely to reach adulthood is a
huge strain on the whole family. Our
youngest son has severely complex and
multiple needs, who is reliant on technology
and although can be stable for long periods
of time, he can deteriorate quickly and
require hospitalisation. We also have to
manage the emotional and practical needs
of our other older child and our own needs
too, which very often get overlooked as we
are so busy concentrating on the needs of
our children. We have difficulty in going on
holiday or even having a short break.
Accessing a children’s hospice service has been a life-line for us, particularly in the early
days; it provides us with an opportunity to have a short break in facilities that enable you to
really relax for a short while and recharge our batteries. We are able to share our
experiences with others in the same situation and have the opportunity to discuss and plan
for the future with empathetic and well trained clinicians. Unfortunately for us the hospice is
not local and means travelling on a 200 mile round trip.
Accessing adequate and appropriate care and support locally for us is limited and there are
no appropriate facilities available. Organising care staff to help us at home is a huge
challenge and ensuring that our needs and our children’s educational, emotional and
healthcare needs are all met is like juggling multiple balls on a rollercoaster. It is not easy
and can be frustrating, emotionally draining and exhausting. For us, knowing that we have
support from the children’s hospice team, at the end of the phone at any time, if we need it is
a great comfort and all families like ours should have that comfort. I know many that don’t.
We know of many other families who have children similar to our own but do not access
hospice services for many different reasons: they believe they are ineligible for support; that
it is too far to travel; or that they haven’t had appropriate discussions with their clinicians
regarding their child’s prognosis, with their needs therefore hidden and impossible to plan
for.
What do I wish for as a parent of a child requiring long term palliative care? That my child
lives well; is supported appropriately, preferably locally; and to make sure that he can access
what he needs so that he can reach his full potential. But also that we have the appropriate
local, well trained support in place to enable choice for him at the end of his life, whenever
that time comes.
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About Together for Short Lives
Our manifesto has been developed in discussion with Together for Short Lives’ members
from the children’s palliative care sector in Scotland – families, professionals and services.
Together for Short Lives is the UK charity for all children with life-shortening conditions
and all those who support, love and care for them.
What are life-shortening conditions in children and young people?
Life-shortening conditions are those for which there is no reasonable hope of cure and from
which children are expected to die. Life-shortening conditions or episodes are those for
which curative treatment may be feasible but can fail. Children with life-shortening conditions
need continuing palliative care throughout the trajectory of their illness.
How many children and young people have life-shortening conditions in Scotland?
There may be as many as 15,404 babies, children and young people in Scotland with lifeshortening conditions.9 This prevalence is growing, with the highest prevalence in the under
one year olds, followed by the 1-5 year olds, so there is a significant need for palliative care
for both very young babies and pre-school children. The highest rate of increase among
those aged 16-19 years, which may be associated with increasing life expectancy and
quality of life resulting from advances in treatment and support.
What do children and young people with life-shortening conditions need? What is
children’s palliative care?
Children and young people with life-shortening conditions need palliative care from the point
at which their condition is diagnosed or recognised - often at birth - until the end of their
lives. Families also need care and support throughout the trajectory of their child’s illness,
including after they have died. Palliative care for children and young people should: 10

meet their physical, emotional, social and spiritual needs

aim to enhance their quality of life and support their family in coming to terms with
their condition and the care they will need

help families understand how the young person’s condition and their needs may
change over time

include managing distressing symptoms, providing short breaks and care through
death and bereavement

be provided in ways which are appropriate to their age and stage of development;
this means care provided in age and developmentally appropriate settings by
professionals who are skilled in working with them.
9
Fraser et al. (2015). Children in Scotland requiring Palliative Care: identifying needs and numbers.
Available to download from: http://bit.ly/1Krn2EU . p.10.
10 Together for Short Lives (2013). Definitions. Available to download from: bit.ly/Z34i5s.
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One size does not fit all - what is the difference between children’s and adult’s
palliative care?
Children’s palliative care is different to palliative care for adults. Whereas the majority of
adults only need palliative care at the end of their lives, children with life-shortening
conditions require palliative care over a much longer period, often from birth as they live with
the instability of their condition. It is common for their conditions to fluctuate and, as such, it
is often much more difficult to identify when a child is moving into their end of life phase.
Children with life-shortening conditions often have complex disabilities, while the range of
health conditions which results in children requiring children’s palliative care is more diverse.
Children’s palliative care is an approach to care in conjunction with curative treatments.
A comprehensive local children’s palliative care service spans health, social care and
education. It is a whole-family approach and has the following characteristics:

It is flexible and focused on children, their parents, their carers and their siblings.

It is accessible 24 hours a day, seven days a week, 365 days a year - from diagnosis
or recognition that a condition will shorten a child’s life, to bereavement.

It supports and enables children and families to choose the type, location and the
provider of the care they receive and allows them to change their mind.

It is not age, time or diagnosis specific - many children who need children’s palliative
care have no definitive underlying diagnosis.

It is multi-disciplinary and multi-agency.

It is accessible to people of different faiths, culture, ethnicity and locations.

It includes pre and post-bereavement support for families.

It is able to manage symptoms.

It supports parents in caring for their children according to their needs and wishes.

It supports and enables smooth transitions for young people with life-shortening
conditions who move from children’s to adults’ services.
Palliative care should be provided in ways which are appropriate to a child or young person’s
age and development; this means care provided in age and developmentally appropriate
settings by professionals who are skilled in working with them.
At all times, locally available and community-led children’s palliative care should be at the
heart of care provided to children with life-shortening conditions. This should be supported
by:

Specialist medical input (for example, medical consultants with expertise in the
child’s condition).

Community children’s nursing teams.

Children’s hospice services.
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
Specialised children’s palliative care providers.

Access to secondary and tertiary care.

Emotional and psychological support.

Local authority children's services - practical care and support, including services
providing equipment to disabled children, education, housing and leisure.

Community paediatricians.

Primary care.
Recent policy developments in children’s palliative care
The Strategic Framework for Action on Palliative and End of Life Care was published by the
Scottish Government in 2015 and committed to:
“Support and promote the further development of holistic palliative care for the 0-25
years’ age group”11
The Health and Sport Committee ‘We need to talk about palliative care’ report published in
2015 acknowledged that:
“access to palliative care for children differs from that for adults in that there are
different types of need and conditions and that often the trajectory of illness varies
significantly from that of adults.12
11
Scottish Government (2015). Strategic Framework for Action on Palliative and End of Life Care
2016-2021. Available to download from: http://bit.ly/1QtJXa6 . p.4.
12 Scottish Parliament Health and Sport Committee (2015). We need to talk about palliative care, 15 th
Report, 2015 (Session 4). Available to download from: http://bit.ly/1RTdoDd p.34.
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